Brennan's Beginnings

A Brennan Update

2011-12-01T09:32:00.000-08:00

I realize an update on Brennan is long overdue. Brennan is 3 1/2 years old now and has started his first full year of preschool. Here he is on his first (rainy) day of preschool:

He is happy going to school, happy coming home and is learning new things all of the time. He's walking independently which is wonderful, but also tiring (for me - apparently not for him!). He can say so many words now and only signs when I can't understand what he's saying. He puts together three and four word sentences and is constantly adding new words to his vocabulary. He talks, and talks, and talks, and talks.....from the moment he wakes until he goes to bed. We recently converted his crib into a toddler bed and he's doing great with it. We've also started potty training though haven't made the full commitment to it yet. But, he definitely "gets it" which is encouraging. He continues to amaze me in so many ways.

A Couple of Things

2011-09-30T11:42:00.000-07:00

With the change of seasons here and winter just around the corner, I wanted to share two products that were great for those fall and winter colds during Brennan's first couple of years. The first is a "NoseFrida." When I heard about it, I thought to myself that I would NEVER buy or use something like that. Read the description and you'll see why. But, after several moms of kids with Down syndrome raved about it, I figured I'd give it a try. And I was SO happy that I did. It helped clear out his tiny little nose in a way that nothing else could.

The second is an Exergen Temporal Scanner. I wish I would have had this when my older kids were little. It is by far the easiest way to take a child's temperature. I use it for all four of my kids, but its especially great for little ones who may not like the under the arm method. You can even check their temperature when they're sleeping if you need to.

New Down Syndrome Studies

2011-09-27T10:51:00.000-07:00

Yesterday, my sister forwarded an article to me about finding from recent studies that were conducted regarding Down syndrome. After reading the article, I responded to my sister by saying that I wish the pediatrician that told us about Brennan's diagnosis would have been able to tell us the finding from this report instead of the doom and gloom he presented to us. The studies found that "the vast majority of parents said they have a more positive outlook on life because of their child with Down syndrome. And, nearly 90 percent of siblings indicated that they feel like they are better people because of their brother or sister with the developmental disability." Additionally, "nearly all of the survey respondents with Down syndrome said they were happy with their lives, themselves and their appearance. Only 4 percent said they felt sad about their life." And I would say, from my experience so far, that this is truly the case. When I've attended the National Down Syndrome Congress conventions, the thousands of attendees are not getting together to boo-hoo about their lives, but rather to celebrate.

The studies are being printed in the American Journal of Medical Genetics. My hope is that geneticists, pediatricians and obstetricians will include the findings from these studies to parents who are just learning that their child has Down syndrome, offering a real-life and not just medical view of the diagnosis.

How's Your News?

2011-09-23T11:27:00.000-07:00

"How's Your News" was a show that aired on MTV a couple of years ago. It was a documentary style news show hosted by people with disabilities which showed them interviewing various celebrities and politicians. If you haven't seen it before, you can find some of the episodes here. I honestly smiled my way though each episode. One of my favorite reporters was Jeremy Vest. Jeremy seemed like the most genuine person I had ever seen who was always both honest and sincere. Recently, the How's Your News team posted an article about him on facebook and I quickly followed the link to read it. The article was written by Jeremy's father who described Jeremy exactly as I had seen him on the show. One line that stood out to me was when he was describing his sons diagnosis - he said, " Jeremy has Williams Syndrome which causes some cognitive difficulties, but at the same time imbues him with some splendid qualities and enormous talent." I just loved that description and think it applies to so many with special needs.
Happy Weekend!

Starting School & Turning Three!!

2011-05-19T11:00:00.000-07:00

Brennan turned 3 almost two months ago. We had my sister and her family over for pancakes to celebrate.

And the day after he turned 3, he had his first day of preschool. He walked happily into school, saying "hello" to everyone he saw.

The a few weeks later, when my Mom got home from her time in Florida, we had another celebration for Brennan's birthday with the most adorable sailboat cake that my Mom and Tanner made.

The hardest part about Brennan turning 3 was saying goodbye to his wonderful therapists. They have all been such a huge source of help and encouragement over the past 3 years. Luckily, his preschool teachers and aide are also wonderful. He is always excited to go to school and asks for his backpack and walker as soon as his brothers and sisters start getting ready for school. He seems to be adding new words to his vocabulary almost daily. He has even started learning the names of his classmates and greets them by name as we walk into and out of the school. He is also taking steps independently, increasing the number of steps he can take little by little. It is exciting to see the progress he's making and also to see how proud he is of himself!

Getting Ready for School

2011-03-22T11:19:00.000-07:00

We are nearing a time I had both dreaded and looked forward to since Brennan was born......his third birthday. Along with his third birthday comes saying goodbye to the wonderful therapists that have helped guide us through the past three years, and hello to school and not having Brennan as my constant companion. During the last couple of months, Brennan has had evaluations by each of the therapists at our public school so they can assess his needs coming into school, evaluations by his early intervention center in order to write their final report, a visit to the Down Syndrome Clinic at Children's Hospital, and an assessment by the Augmentative Communication Department at Children's Hospital. All the while, I've been reading and talking to other parents to ready myself for his Individualized Education Program (IEP) meeting.

Evaluations:

Brennan's evaluations from his early intervention center and the public school had very similar results. He has not had formal evaluations since he was about a year old since I didn't see any real benefit to them. I remember when Brennan was first born and I'd read on other blogs about kids and the assignment of developmental age to their abilities and thinking how hard it must be to see that as a parent. However, that ended up not being the case for me at all. I realize exactly where Brennan is developmentally and am so incredibly proud of him. He has learned so much and come so far in the past three years.

So, here's the breakdown:

Fine Motor: 23 months

Cognition: 18 months

Receptive Language: 20 months

Expressive Language: 16 months

Gross Motor: 11 months

Social Emotional: 29 months

Self-Care: 23 months

Down Syndrome Clinic:

At Brennan's annual visit to the Down Syndrome Clinic, he saw a pediatrician, physical therapist, dentist, nutritionist and audiologist. I like going to the clinic to get a second opinion on what we're doing with Brennan. Basically, they all agreed that he's doing great and had a few suggestions going forward. The pediatrician suggested he see an opthamologist this year, get another celiac test, use a total communication approach in school (verbal, sign and pictures) and that I send a book of Brennan's signs in to school with him. The physical therapist suggested scheduling an appointment with an orthopedist and also had a couple of suggestions of what to include in his IEP. The dentist said his teeth looked healthy and suggested wiping his mouth with a cloth after brushing (since he's not spitting after brushing yet). The nutritionist suggested adding a multi-vitamin and said otherwise his diet sounded well balanced. And lastly, he got a clean report from the audiologist.

Augmentative Communication Evaluation:

I took Brennan to see and augmentative communication specialist so they could suggest the best method of communication for Brennan. He currently uses sign language as his primary means of communication. As his family, we understand all of his signs. However, many of them are approximations or slightly different than the actual sign - so my concern is that even though his teachers will know sign language, they may not understand his signs. So, at this evaluation Brennan was able to try various communication devices. He took to them very quickly and was able to navigate them to ask for what he wanted. The device that was recommended for him is the Vantage Lite. And while it is totally cool, the $7,495 price tag was not. So, we're putting that on hold and the school will have their own augmentative communication specialist work with him and possibly find devices we could borrow. In the meantime, Brennan's verbal communication seems to be taking off......so we'll see!

IEP

We had Brennan's IEP meeting at the beginning of March. I had read From Emotions to Advocacy and many IEP related articles and had spoken to other parents and attended a few workshops. I felt somewhat educated about what Brennan's rights are and what to expect from the meeting, but also felt like special education laws are complex and that it would take a great amount of time and research for me to feel really comfortable with them. So, I hired an advocate who will be my go-to expert as questions arise over the years to come. Going into the meeting, I had written down what my ideal education plan for Brennan would be (number of days, frequency of therapies, etc.). Luckily, the schools proposal match my ideal plan exactly. So, starting on Monday, Brennan will go to our local public integrated preschool (with a mix of kids on IEP and not on IEP's) four morning a week for 2 hours and 15 minutes per morning. He'll see the speech therapist and occupational therapist each twice a week for 30 minutes and the occupational therapist once a week for 30 minutes. The therapies will provided both in and outside of the classroom. He'll also have an aide to help him get from place to place since he is not yet walking independently.

And, as thanks for sticking with me through this very long post, here's a picture of Brennan showing how excited he is to be starting school:

Baby Steps

2011-03-21T13:49:00.000-07:00

Helping Brennan learn how to walk has taken a combination of different methods, each a baby step toward the end goal. He started army crawling when he was 1 1/2 years old. It was over a year later when he first crawled on hands and knees. He's been getting physical therapy one hour per week since he was a month old. In addition to that, he did swim therapy for a couple of months. Swim therapy was great for him and really helped him learn to bear weight on his feet. Then he did a few sessions on a treadmill which helped him learn how to move his feet in a walking pattern.

Once he understood how to move his feet, he was ready for a walker (which his early intervention center graciously loaned us so he could practice at home).

He has loved this new sense of independence. He also loves how quickly he can get from one place to another!

A friend suggested taking Brennan to the mall to walk which has been so great for him. He loves the social aspect of saying "hi" and "bye" and waving to everyone he sees. And he'll walk, and walk, and walk until his hands hurt from holding the handles on his walker.

About two weeks ago, Brennan took a few step independently for the first time. It may still be a while until he's really walking on his own, but he's making great progress and we're SO proud of him.

Wow!

2011-03-21T10:24:00.000-07:00

I can't bleieve it has been 5 months since I last posted! Here's a quick photo recap.

Brennan is turning into such a big boy. Doesn't he look older sitting here with his brothers and sisters?
And eating at the table with his cousin....

He's spent alot of time playing....

He loved helping decorate the Christmas tree...

And opening presents with his Grandma...

And was a perfect companion to his sister as she recovered from having her tonsils and adenoids removed.....

Then he spent more time playing....

Life is good and it has been so much fun watching Brennan grown and learn. More to come....

IEP's

2010-10-21T10:22:00.000-07:00

Brennan will turn three at the end of March. So, in just five short months, I will be sending him off to school. I feel both excited and nervous about this transition.....but mostly nervous. I have been trying to educate myself on the process in an effort to both calm my nerves and make sure I am as prepared as possible. I recently found The IEP Toolkit which was written specifically for families of children with Down syndrome. It seems like a great starting point for preparing for an IEP. For more in-depth information, I have heard that "Wrightslaw: From Emotion to Advocacy" is THE book to have. And, of course, talking to other parents who have been through the process has been hugely helpful. I hope to share any valuable information I learn along the way and would love to hear any advice or suggestions you have relating to IEP's and transitioning to preschool.

A Few Pictures From Summer

2010-10-20T08:18:00.000-07:00

I can honestly say that this was the best summer we've ever had as a family. The weather was perfect and we all had so much fun together. Brennan loved being outside, playing in the kiddie pool in our backyard, swinging on the swingset, scooting around our driveway in his cozy coupe, being pushed on his tricycle, going to the beach, swimming at the pool, and playing with his siblings and cousins. He was even happy on our 15 hour car trip....

Orthotics

2010-08-27T06:08:00.000-07:00

Once we got Brennan up on his feet, we realized that he would roll his ankles (as picture below) and would also hyper-extend his knees. This seemed like it must be uncomfortable for Brennan, could be part of the reason he is reluctant to bear weight on hi feet and could also cause alot of pain and problems for him in the future if not corrected. I consulted with many people (pediatrician, physical therapist, Down syndrome clinic, orthotists) who were able to provide me with little to no useful information. All agreed that he would benefit from some type of brace or ankle foot orthosis (AFO), but none could tell me which type of AFO.
Finally, Brennan's swim therapist in collaboration with an orthotist were able to determine what type of support Brennan needed.....a hinged AFO. The hinges on the AFO can be tightened or loosened to restrict or allow for more movement. To start, Brennan are tightened to restrict motion and also to keep him from hyper-extending his knees. The AFO also provides the support he needs to keep his ankles from rolling. As his strength increases, the hinges will be gradually loosened to allow him to do more of the work. And at some point he will move from his current brace that goes up his calf, to one the goes just above the ankle.
It certainly took some time to figure out what type of orthosis Brennan would be most beneficial for Brennan, but I feel confident that the right decision was made and am excited to see the progress he will make now that his feet, ankles and legs are properly supported.

Swim Therapy

2010-07-22T12:08:00.000-07:00

Physical therapy is by far the most difficult of Brennan's therapies. He has always had really, really low muscle tone which makes meeting gross motor milestones that much more difficult. For a long time, he has been resistant to bearing weight on his feet which makes working on standing nearly impossible. So we struggled with figuring out how to get him weight bearing in order to move him closer to his next gross motor milestone of walking. I had heard from a couple of friends that swim therapy had proven very beneficial for their kids. Unfortunately, our local intervention center does not offer swim therapy and I worried that doing it on our own would be very costly. Luckily, our insurance company automatically authorized 15 visit (without even a phone call from me - yahoo!). The therapist said it often takes kids a couple of sessions to get used to the therapist and the water, but Brennan loved it immediately.The benefit to Brennan of swim therapy was that the buoyancy in the water enabled him to practice standing without actually having to hold all of his weight. This, in turn, increased his confidence in his ability to bear weight on his feet and legs and after only a few swim therapy sessions, he was bearing weight on his feet and legs on land, too.
Unfortunately, the swim therapist is currently taking medical leave, but I think the sessions he had were extremely beneficial and look forward to resuming his swim therapy soon. In the meantime, we've been spending lots of time at the pool "practicing" on our own!

So.......

2010-07-21T06:28:00.000-07:00

I'm definitely not the best blogger. I have many thoughts in my head, but just haven't made the time to sit down and type them. As a quick summary, Brennan turned 2 in March and in the last few weeks has really started acting like a 2 year old. He now tells us quite clearly when he is not happy, when he wants something, when he doesn't want something, when he wants to do something or doesn't want to do something (read: lots of yelling!). We're working on teaching him more signs that will hopefully help him communicate in a less headache-inducing way. Other than that, he loves reading books,puzzles, swimming, swinging, being pushed in his tricycle, waving to everyone he sees,
any game that involves putting things in and taking things out. He also loves wearing hats,wrestling with his brothers, playing with light sabers, listening to music and giving hugs.

I'll be back with some things I want to share about swim therapy, orthotics, and some great workshops I attended at the National Down Syndrome Congress Convention.

Two of Brennan's Favorite Books

2010-07-20T17:13:00.000-07:00

These are two of Brennan's favorite books: "Kids Like Me...Learn Colors" and "Kids Like Me...Learn ABC's"

Each page of both books has a picture of a child with Down syndrome. Brennan laughs and smiles every time we read these books. And when there is a page with a group of children on it - he automatically points to the child with Down syndrome....it's like he knows he has something in common with them. There are a few other children's board books that contain pictures of kids with Down syndrome, but these two are Brennan's favorites by far - and they're educational, too!

Happy 2!!!!

2010-05-12T10:55:00.000-07:00

Brennan turned 2 on March 27th. I feel so fortunate to be the Mom of this amazing little boy. He is a happy, content, go-with-the-flow kind of kid. He laughs easily and loves to cuddle. A hug is always accompanied by the sweetest pat, pat, pat on your back and he's just recently learned to give wet kisses on our cheeks. He is a proficient army crawler, getting himself quickly to and from wherever he wants to go. He communicates his wants and needs through sign language and is steadily adding new signs to his repertoire. He loves to eat, listen to music, dance, swing and read books (his most requested activities). He waves to every person he sees and loves attention. He has a great sense of humor and likes to find new ways to make us laugh. It has been so much fun watching his personality form and grow. He's just a great kid and a wonderful addition to our family! Happy 2nd (belated) Birthday, Brennan!

Praying with Lior

2010-04-19T09:39:00.000-07:00

Praying With Lior is a documentary about a 13 year old boy, Lior, who has Down syndrome. The documentary follows him in the months leading to his Bar Mitzvah. Lior's mother was instrumental in providing Lior with amazing faith and spirituality. There is a clip shown of Lior with his mother when he was just a few years old and his mother was asking him what song he wanted to sing. He shook his head "no" to all of the typical toddler songs, and gave a huge smile and began to sing along enthusiastically to a prayer. Sadly, his mother died when he was just 6 years old - but her influence on him gave way to a very strong religious faith and a passion for prayer.

As a talkative boy with a good sense of humor, Lior was often the center of attention within his family. He and his older brother had an extraordinarily close relationship. They show him watching Lior during his Bar Mitzvah with tears streaming down his face - a combination of pride, love and admiration. It is the type of relationship I hope my children will have. Then there is Lior's little sister who seems simply irritated by Lior's presence. You can sense that she resents having lived in his shadow. She also says that he embarrasses her. It was so sad, but also understandable.

Within his religious community, Lior was widely accepted - especially by the adults who enjoyed praying with him and had a sense that Lior was somehow closer to God than most. Within his school community, his acceptance was mixed. Some of his classmates were interviewed, most of whom mentioned that they respected Lior and that he was just as God meant for him to be. There was also a clip shown of Lior on the playground during recess where he asks a group of boys if he can play football with them. There is a discussion among the boys, some saying yes, others saying no. The ones arguing that he couldn't play because "he wasn't good at football" won. It broke my heart, but is a scenario I can imagine happening on playgrounds everywhere. At the end of the film, they show Lior going to a new school (high school, I presume). His parents are discussing their apprehension about sending him to a new school. Then they show Lior walking into a classroom with only kids with Down syndrome. I know inclusion is supposed to be the best learning environment, but I let out a sigh of relief when I saw his classmates. Something about it felt so comfortable and so safe. I was surprised at my reaction, but could not deny feeling better about Lior being with his peers with Down syndrome rather than typical peers. Food for thought, I guess.

Another thing that I've thought about many times since I saw the film was when Lior's father was describing Lior and said "he maybe retarded, but he's not stupid." I was shocked when he said this, mainly because I am so used to taking offense to the word retarded. But, the more I thought about it, the more sense it made to me. Some degree of mental retardation comes with the Down syndrome diagnosis. I can see that areas of Brennan's learning are slowed, but I also see that he is not stupid. He is a great imitator and a good problem solver and is always learning. I can't even count how many times I've told him how smart he is.

The movie evoked every emotion possible in me. Happiness at his relationship with his older brother, sadness at the relationship between him and his younger sister. Pride at the amazing job he did at his Bar Mitzvah after months of preparation. Excitement at the acceptance shown by his classmates, disappointment at the exclusion shown by his classmates. Overall, it was a fantastic documentary - one I highly recommend.

Brennan and Tanner

2010-04-18T11:45:00.000-07:00

Tanner, our second child, will be 6 years old in August. We have talked to him about Brennan having Down syndrome, but he has never shown that he really understands what Down syndrome means. He did recently ask "if Brennan is 2 years old, why is he still a baby?" He has also asked me if Brennan is the most special baby. So, he's definitely trying to figure things out in his own way. Jenna and Parker are more hands-on with Brennan, which often leaves Tanner with less opportunity to play with him. Yet they still have a special kind of relationship. Brennan will often hold his arms out to Tanner and Tanner will stop whatever he's doing and go to Brennan and they give each other the biggest, longest hugs. They are some of the sweetest brotherly moments.
Recently, Tanner had a friend over to play. All the kids were playing while I fixed lunch. When I looked over, I saw Tanner with a very serious look on his face. Then he looked at his friend and said "if you ever say that about my baby brother, I won't be your friend anymore." I hadn't heard what the friend had said but was so incredibly proud of him. As I see Tanner's character and personality develop, I see that he's a boy who is quick with a compliment, says "I love you" without being solicited, cares about other peoples feelings, and sticks up for his baby brother. I'm so incredibly proud!

Love it!

2010-03-31T11:04:00.000-07:00

This article is fantastic! Today's youth play a huge part in the future acceptance of children and adults with disabilities. I love what this group of students is doing and believe their efforts will have a positive impact on the lives of many. Bravo to this outstanding group of teenagers.

Spread the Word to End the Word

2010-03-03T06:36:00.000-08:00

Help eliminate the use of the R-word.....visit r-word.org for more information and to make the pledge.

Visit to the Down Syndrome Clinic

2010-02-25T09:33:00.000-08:00

A couple of weeks ago, Brennan had his second appointment at The Down Syndrome Clinic at Boston Children's Hospital. The visit to the Clinic consists of consecutive appointments with a pediatrician, nutritionist, physical therapist, speech therapist, dentist and audiologist. I think of it as a double check of the services and care he is already receiving. Our first appointment was at 8:30 and we finished around 1:30 - so it was a full, but informational day.

It was the first time we had met with this pediatrician and I was really impressed with her. She did a thorough history of Brennan's life thus far and took the time to answer all of my questions. She made me feel like my questions were important and took the time to answer them all completely without me ever feeling rushed. We talked about GI scopes, sleep studies, ENT appointments, orthotics, constipation, breastfeeding, dry skin, IEP's, sign language.....we really covered a wide range of topics. Based on Brennan's history, she would not recommend a GI scope, sleep study or additional ENT appointments at this time. She did think it would be beneficial for Brennan to be evaluated by an orthopedist to see if he would benefit from orthotics - so that's on my list. She also gave suggestions for foods that might help with Brennan's occasional constipation (blueberries, grapes, ground flax seed). She also voiced her frustration at the medical community telling new mothers that their babies with Down syndrome would most likely not be able to breastfeed (as was the case when Brennan was born) since it seems that, more often than not, mothers are able to successfully breastfeed their babies with Down syndrome. She said this is one of the many myths within the medical community that she hopes to correct. She also recommend ceraVe cream for Brennan's dry, winter skin - which we haven't tried yet, but will. And then talked at length about signing, sequencing, and IEP's. She told me about a cool website called signingsavvy.com and encouraged us to use signing as well as picture books and sequencing at home. Then she gave tips for our IEP, such as making sure he has the support he needs, making sure sign language is supported in the classroom and emphasized that is it important to be as specific as possible with the terms of the IEP. She ended the appointment with a thorough physical exam.

Next, we met with the nutritionist. I gave her examples of Brennan's daily meals, snacks, foods he likes and foods he doesn't like. She thought he had a well balance diet, but that he should be drinking more fluids during the day (he needs 33 ounces a day and usually has about 24). Also, Brennan currently drinks soy milk instead of cows milk, so she said to make sure the soy milk is calcium and vitamin D fortified so that it is providing the necessary nutrients. She also suggested fruit-eze to help with his constipation and possibly miralax if the fruit-eze, fruits and increased fluids didn't help.

Our next appointment was with the physical therapist. Brennan was true to himself and totally resisted putting pressure on his feet. Therefor, she wasn't able to assess his need for orthotics but agreed that we should see an orthopedist and thought that he probably would benefit from having them. She gave me suggestions for getting him to work on being on hands and knees (since he has perfected the army crawl and sees no need for doing it any other way!). Most of the suggestions she gave were things Brennan's PT had already suggested, but I was happy to have affirmation that we were on the right track and that she would be doing things largely the same way that Brennan's PT is.

Next, we met with the speech therapist. I was so looking forward to this appointment and ended up being totally disappointed with it. The appointment consisted of her asking me "yes" or "no" questions from a pre-printed questionnaire. She didn't even interact with Brennan. Basically, she could have sent the questionnaire to me at home and saved us both alot of time.

Then we went to see the dentist. This would seem like the least interesting of the appointments, but it was actually quite interesting. The dentist had last seen Brennan when he was about 8 months old. At that time, she told us then that he had an under bite and that he would most likely need a palate expander at some point to correct it. She encouraged us to continue letting Brennan use his pacifier as this might help correct his under bite. Well - at this visit, she said he no longer has an under bite. I was so surprised and really pleased since the palate expander sounds painful. At his last appointment, she also said that he had a high arched palate and this time said that he doesn't. I contribute this to using the straw cup to help him learn tongue retraction - which in turn helps to shape the palate correctly (as noted in Sara Rosenfeld-Johnson's article "The Oral Motor Myths of Down Syndrome"). Then she told us that we could switch to "real" toothpaste (instead of the baby/training toothpaste) when he's 24 months old and also said we should have him face the mirror while we brush his teeth so he can see what we're doing which will help him as he starts learning to brush his teeth by himself.

Whew! Lastly, we went to see the audiologist who said Brennan's hearing was totally clear in his right ear but she was not able to get a clear reading on his left ear, most likely due to a recent cold. So, we'll go back in 6-8 months to have his left ear re-checked. Brennan actually fell asleep while we were waiting for the audiologist to set up and I honestly could have done the same. It was a long day but totally worth the time spent.

The World of Possibility

2010-02-24T16:56:00.000-08:00

I found the following story over at Bridget's Light over a year ago and have thought of it many times since then. I often think of this story when I'm talking to others about Brennan as this story shows the power the words we choose can have.

A Story about My Two Daughters : How to Live in the World of Possibility

By Candee Basford

My first daughter was diagnosed with Down syndrome soon after she was born. Her language is delayed. Her abstract thinking abilities impaired. She is easily distracted and sometimes refuses to follow or listen to directions. She has some autistic-like tendencies. She has a bilateral hearing loss. Hearing aides have been recommended but she refuses to wear them. She has an uncorrected vision of 20/200 and a corrected vision of 20/60 at a distance. She is highly farsighted with nystagmus. She can be extremely stubborn and sometimes makes inappropriate comments. She can perform some functional tasks but has trouble with basic tasks like counting money and making change. She can follow simple cooking instructions. She can make her bed.

My second daughter is a sophomore in college. She is majoring in science. She loves anatomy and physiology, biology and anything connected to science. She loves to read but because of a vision loss she needs to take frequent breaks. She has a hearing loss so it helps if she can see the speaker and keep background noise to a minimum. Recently, she has become very interested in sketching portraits. Because of this new interest she is taking a course in advanced drawing. She is popular – the life of the party. She loves to flirt – in fact, her senior class in high school voted her most flirtatious. She has many friends. She has the ability to make other people feel welcome and loved. She is persistent, loves having fun and has a great personality. She loves to dance, travel and write to and receive letters from friends. She dreams of starting her own rock band.

The story of my two daughters illustrates the power of our words and our perspectives. It illustrates the power of the scientific processes and the labels we continue to use to diagnose, predict and sort people.

How? Both stories are about the same person, my daughter. The stories “differ in the way they are constructed – in their purpose – in their consequences – and in the assumptions they shape.” (O’Brien & Mount)

The story about my "first daughter” was constructed from exact words and phrases found on my daughter's school and employment related documents, written in the language of professionals, educators, psychologists and job specialists. It tells what she can’t do, won’t do and why. In this story, she is in need of repair, and thus in need of lots of professionals to fix her. The purpose of this story, in part, is compliance with federal and state regulations. The first consequence is that we (and the rest of society) accept the story as true and begin to adopt the language and beliefs and practices. Once that happens, the sad consequence is segregation, a client’s life, a planned life surrounded by professionals. The assumption in the story about my first daughter is that she is needy, broken, difficult and – most important – that her life should be safe and predictable surrounded by the service system.

The story about my “second” daughter was constructed from love, experience and by paying attention to gifts. It is told from the perspective that my daughter has immeasurable capacity once she has a valued and connected life in her community. The story about my second daughter is shaped (and lived) from a capacity perspective. This story is told in “context” of a life connected to others, a life that unfolds in exciting and unexpected ways precisely because of the many relationships she has. The consequences of this story are community and risk taking and surprises. The consequence is citizenship. The assumption in the story about my second daughter is that she is a person who has capacity, interests, gifts, and contributions especially when her life unfolds in the presence of and participation in community.

The story of my two daughters represents two different worlds – the world of measurement and the world of possibility. Often, as my daughter grew up, I felt the overwhelming gravity of the world of measurement, pulling her toward specialized services and segregation with the promise of safety, and simplicity, and repair. In the world of measurement you get to know others by measuring and comparing. But it is the world of possibility that I find most powerful and promising.

The story about my second daughter is the story of possibility. It is the NEW story that we must learn to tell. It is the story told (and lived) from a capacity perspective, from a community perspective. We can learn to tell this NEW story by first examining our own perceptions and advocacy efforts. We can learn to tell the NEW story by listening, seeing, asking, discovering and taking action in the direction of gifts and capacities. We can learn to LIVE the NEW story by supporting rich relationships and taking actions that lead to more inclusive opportunities in our schools and in our communities, for it is these rich inclusive and ordinary experiences that will yield the context necessary to live in the world of possibility.

Copywrite 2006, Candee Basford

I want others who meet Brennan to recognize his strengths and learn about his interests - to see him as a person rather than as a diagnosis.... to see his potential.......to see the possibilities.

Pizza and Movie Night

2010-01-28T20:05:00.000-08:00

A few weeks ago, the kids had pizza and movie night. Since we had been busy with the holidays, I hadn't used Brennan's stander in a while (he's supposed to use it for a short period of time every day to help strengthen his legs). So, I figured I'd let dinner time be his stander time. The second I put Brennan in the stander, Jenna, Tanner and Parker grabbed their plates and came over to eat with him.

Then it was time for the movie. Obviously, Brennan would much rather talk to his siblings than watch a movie.

So cute!

Bones???

2010-01-14T10:28:00.000-08:00

Jenna, Brennan and I were sitting together recently when Jenna looked at Brennan and then asked me "where's Brennan's extra bone?" With a confused look on my face I said "he doesn't have an extra bone!" to which she replied, "yes he does, mom - you said people with Down syndrome have an extra bone." At which point I realized that she had confused "bone" with "chromosome." I remember my friend and fellow-mom, Jennifer, writing about a good way to explain Down syndrome to kids called the "chromosome cake." So, I used this method and explained to Jenna how cakes are made with eggs, flour, oil, sugar and vanilla and that having Down syndrome is like adding more of any one ingredient. I told her the extra ingredient may make the cake fluffier or richer, but that the cake would still be delicious. This explanation seemed to make sense to her as she responded, "then I hope Brennan's extra ingredient is sugar so he'll always be sweet."

Let it Snow, Let it Snow, Let it Snow!

2010-01-04T11:25:00.000-08:00

Winter has definitely arrived here in New England! Luckily, our littlest man doesn't mind the cold. In fact, we recently discovered that Brennan LOVES sledding. The faster he goes, the happier he is.And could he be any cuter in his snow bibs?

Brennan's First Visit with Santa

2009-12-16T05:54:00.000-08:00

We went to a Christmas party at Brennan's Early Intervention Center yesterday and Brennan had his first visit with Santa. His reaction was classic.......

At first he was a little scared of the man in the red suit

Then he took a minute to check him out (someone handed him bells, too - which helped to distract him)

And decided that Santa's not so scary after allPriceless.

Lil' Dipper, Anyone??

2009-12-14T05:56:00.000-08:00

I recently asked an Occupational Therapist at Brennan's Early Intervention Center for recommendations on how to help Brennan learn to feed himself with a spoon. She said that Gerber Lil' Dippers were a good beginner utensil. They have a large rubber handle which is easy to hold and a flat end so it doesn't matter which direction the utensil is facing, thus giving the child the most opportunities for success. We've only used them a couple of times, so I can't give a personal report on their success - but they seem like a good little tool. I found them on e-bay for a really good price, so I have 4 packages (with 2 Dippers per package) that I would like to send to anyone who would like to give them a try. Just send me and e-mail at brennansbeginnings@yahoo.com.

Awesome Trike

2009-12-11T11:31:00.000-08:00

My friend Julia sent me the link to this trike and I just LOVE it! With the harness and seat frame, I think it will be perfect for Brennan as it will give him the extra support he needs. As an added bonus, pieces of the bike can be taken off as he grows and no longer needs them. Brennan's siblings spend alot of time riding their bikes in the spring, summer and fall and I'm excited for Brennan to be able to join them.

Magazines

2009-11-24T12:14:00.000-08:00

There are two magazines I have found that are for parents of children with special needs. The first is Parenting Special Needs Magazine, which is a free online magazine. After a quick browse, it seems like a good source of accurate information as well as inspiration. The second is Exceptional Parent Magazine which is available in print and online by paid subscription. I have subscribed to this magazine for about a year and have found useful information in each issue. Please let me know if there are any other magazines for parents of children with special needs that you know of and would like to share.

The Mustn'ts

2009-11-16T08:05:00.000-08:00

Listen to the Mustn'ts
by Shel Silverstein

Listen to the mustn'ts, child,
Listen to the don'ts
Listen to the shouldn'ts
The impossibles, the won'ts
Listen to the never haves
Then listen close to me -
Anything can happen, child
Anything can be.

I was reading "Where the Sidewalk Ends" with my daughter last night and just loved this poem. It is short and simple, but emphasizes an important point. I think parents are too often told of their children's limitations....that they won't be able to do something because they're too big, too small, too short, too tall, not smart enough, not strong enough, too this or too that. This poem reminds me to ignore the naysayers and to encourage and support my children in achieving whatever it is they want to achieve. As Shel says, "Anything can happen, child. Anything can be." I came across an article this morning that proves this point, yet again.

Brennan and Jenna

2009-11-15T11:17:00.000-08:00

Monica from Monkey Musings tagged me in the Name Tag game, where I am supposed to explain how we chose each of our children's names. We did not have any family names that seemed fitting, so we headed to the book store and bought a couple of baby name books. Eric liked unique names and I liked traditional names....so, in naming Jenna, Tanner and Parker, we compromised with names that aren't totally common, but aren't totally uncommon either. Jenna has my middle name (Noel), Tanner has Eric's middle name (Christian), Parker has Eric's dad, brother and nephews first name as his middle name (James) and Brennan has Eric's first name as his middle name. But, no big stories or significant background for each of the kids first names. Except Brennan. Jenna actually named Brennan. I'm not sure how she came up with the name (although one of her best friends from preschools last name is Brennan - but Jenna says she didn't know that when she picked it). But for quite some time before he was born, she said she thought his name should be Brennan. When he was born, we decided she was right. And, you could say, the rest is history - as the two have had an incredibly close bond ever since.
All of our kids adore and have great relationships with Brennan - but I think Jenna may be his biggest cheerleader. She is incredibly observant and notices and brings to our attention each new skill Brennan learns. You'd have thought it was Christmas morning the way Jenna was jumping up and down and cheering the first time Brennan got into a sitting position by himself. When friends of mine are inquiring about Brennan and how he's doing - Jenna jumps in and starts telling them all of the things he can do. She's just so proud. She holds him, hugs him and plays with him countless times throughout the day and always tells him that she loves him and that he's the best baby in the world. And I know that she means it.

A Quote

2009-11-03T05:59:00.000-08:00

"Enjoy the little things in life, for one day you'll look back and realize they were the big things"

I saw this quote in a store a while ago and have thought of it many times since. I find myself enjoying the little things even more than usual lately....the sweet interactions between my kids, the funny things they say, their contagious laughter, their heart warming hugs. These seemingly little things really are the big things in life.

Our Fall Schedule and One Cute Cow

2009-11-02T10:03:00.000-08:00

With our kids at ages 1, 3, 5 and 6, they are going in four separate directions during the week. Jenna is in 1st grade and is at school 7 hours a day 5 days a week, Tanner goes to Pre-K for 3 hours a day 5 days a week, and Parker goes to preschool 3 hours a day 3 days a week. Jenna, Tanner and Parker all take swimming lessons once a week, Jenna has gymnastics once a week, Jenna and Tanner both play soccer once a week and Jenna goes to an art class once a week and Daisy's once a month. Brennan currently has therapy 4 times a week. One hour each with a physical therapist, speech therapist and developmental specialist (who all come to our house), then one and a half hours at our local early intervention center where he attends a playgroup run by a physical therapist and two occupational therapists. One half hour is spent in their therapy room working on gross motor skills and the remaining hour is like preschool where they have a snack, circle time and play time. The amount of therapy he has seems right for him and for our family. Brennan's service coordinator recently asked if we'd like to add any services and I felt confident saying that we wouldn't. Three of Brennan's four therapies are scheduled while his siblings are at school, which I really like. It lets me focus on his therapies while also not taking time away from my other kids. So, there you have it - our fall schedule. And, just for fun, a picture of one cute cow on Halloween night with his Grandma.

Hallelujah!

2009-10-26T05:54:00.000-07:00

Brennan is (finally) drinking from a straw and I couldn't be happier! We had been working on it daily for months and I was starting to feel pretty discouraged. So, we took a short break from the straw ( I think I needed the break more than him!). Then, I gave him some soy milk in the honey bear on Friday and he drank from it all by himself. I wasn't that excited when it first happened because I thought it may be a fluke and the next day we'd be back to me squeezing the liquid into his mouth. But, he has been drinking from it by himself several times a day since then - even signing "drink" or pointing to the honey bear wanting to drink quite often. He gets pretty cranky now if someone else is having a drink and he's not. Quite a change from even a few days ago! He'll even hold the honey bear by himself, which is great! I'm so proud, happy, relieved.....hallelujah!

Brennan and Parker

2009-10-20T06:47:00.000-07:00

Parker, our third child, turned three years old in June. As the child closest in age to Brennan, I have wondered how their relationship would evolve. When we found out our fourth child was going to be a boy, I assumed he and Parker would be good buddies - and I believe they are. Parker calls Brennan "babe", "baby" or "baby Brennan" and can frequently be found talking to him, giving him a toy, or teaching him how to do something. One of the first things he asks me after he wakes up in the morning is "Can we go wake up Baby Brennan?" I have heard him countless times tell Brennan that he loves him and that he's the best baby. He always tries to get the seat closest to Brennan at the kitchen counter and pulls his seat as close to Brennan's as possible so they can talk while they're eating. It's about the cutest thing in the world.
On a recent trip to the playground with Brennan and Parker, I had a moment where I felt sad for Parker. I was picturing what it would be like if Brennan didn't have the bonus chromosome. They would be running around, Brennan following Parker up the stairs and going down the slide together. Instead, I was holding Brennan as Parker ran around the playground. Then Parker yelled from the top of the slide "Mom, put Brennan at the bottom of the slide, he wants to watch me!" So, I did - and Brennan and Parker laughed and laughed....Parker going down the slide and Brennan watching, clapping, and both of them laughing over and over and over again. Parker, even at his very young age, is making sure that Brennan doesn't miss out on a thing.

Holland?

2009-10-19T10:25:00.000-07:00

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This poem was written by the mother of a child with Down syndrome. I read it for the first time when Brennan was a couple of weeks old and felt that it put into words exactly what I was feeling. Suddenly, I was in a place that I wasn't expecting to go and quite honestly didn't want to be. I held out hope that, with time, I would find and enjoy the very special and lovely things about Holland. But now, I don't actually feel like I'm in Holland. I feel like I'm still in Italy - but instead of going to Rome and Venice - the cities where most tourists go, I get to go to Portofina and Vercelli - which are just as beautiful, but with fewer visitors. I'm a mother of four fantastic kids and happy to be exactly where I am.

The Buddy Walk

2009-10-12T13:32:00.000-07:00

Yesterday was a beautiful, sunny fall day for the Massachusetts Down Syndrome Congress' Annual Buddy Walk. The MDSC members registered 2,000 plus walker and raised over $230,000. It was wonderful to see so many people gathered together to promote acceptance and inclusion of people with Down syndrome. Pictured below are Dr. Brian Skotko, who tirelessly advocates for people with Down syndrome, and Karen Gaffney, who is an accomplished swimmer and inspirational public speaker and self advocate.

And, of course, our inspiration....

Brennan in Action

2009-10-06T12:03:00.000-07:00

Here's a video of Brennan in action. He's not interested in crawling yet, but who can blame him when he obviously has so much fun rolling? He also loves to tell funny stories while using hand gestures to get his point across. Enjoy!

Me With My Happy Boy

2009-10-03T06:06:00.000-07:00

As is the case with many Moms, I am usually the photographer and therefor, rarely photographed. So, a big thanks to Eric's cousin, Lori (my cousin-in-law?), who took this picture while visiting us this summer. I absolutely love it. Brennan's big smile, while excitedly clapping his hands....it's so him and perfectly captures the daily interaction between us. This little boy is pure joy.

"My Great Story"

2009-10-02T05:54:00.000-07:00

The National Down Syndrome Society has compiled an online book called "My Great Story." It is full of inspiring stories that celebrate the lives, interests and achievements of people who have Down syndrome. When you have some free time, stop by and read some truly great stories!

Dr. Allen Crocker

2009-09-21T08:28:00.000-07:00

"As one grows with the child and as the trip of life is unfolded, the special features become part of a collection of goodness and personalness that are your new child. When you reflect you can identify that that 47th chromosome has indeed made a difference but in the sum this difference has made an extraordinary human and someone for whom you could not have realized or anticipated the happiness and strengths that will be seen and felt. Parents tell me again and again how they have been unexpectedly rewarded and blessed by seeing with new vision. These babies have an unparalleled set of personal features that take us with them, open our eyes and fill our hearts. Perhaps one of the most profound experiences of a special parenthood is coming to realize that your old perceptions were too limited and that there is much waiting to be embraced. That extra chromosome becomes a ticket to some new warmth and features that change lives and change them well."

This quote from Dr. Allen C. Crocker was posted by fellow mom, Heather, on an online Down syndrome board that I frequent. It was taken from the DVD "Down Syndrome: The First 18 Months" where Dr. Crocker was discussing his thoughts about raising a child with Down syndrome. I have read and re-read this quote countless times. It is so beautiful, so warm, so heartfelt and I believe each word completely.

Dr. Crocker graduated from medical school in 1948 and has worked with children with developmental disabilities for his entire career. He has advocated tirelessly with the goal of bettering the lives of ALL children. He was instrumental in setting up the Down Syndrome Clinic at Children's Hospital in Boston and has been very active with the Massachusetts Down Syndrome Congress, among numerous other outstanding achievements. Eric and I were fortunate to be able to take Brennan to meet Dr. Crocker when Brennan was just a few weeks old. He was the most caring and optimistic doctor I have ever met. He spoke to us as if we had just won the lottery by having Brennan in our lives. Not a negative word was spoken - which was in great contrast to our experience with other doctors up to that point. Although I was still in a new baby/new diagnosis fog, I remember leaving that meeting feeling encouraged and thinking that maybe Dr. Crocker knew something that I didn't. He helped me start to see our future in a brighter light. As we saying our goodbyes, he leaned down and kissed Brennan on the forehead. It was the most touching moment. What a dear man who has done so much for so many children and their families.

Serious Cuteness

2009-09-18T10:15:00.000-07:00

The Day After

2009-09-17T07:30:00.000-07:00

The morning after my pity party, I was still feeling down. At 9:00 that morning, Brennan's developmental specialist arrived unexpectedly. Between her vacations and our vacations we hadn't seen eachother in a few weeks and hadn't scheduled that day's appointment. I was not exactly in the mood for one of Brennan's therapy sessions that morning, but figured we should go ahead with the visit since she was already at our house. And I was SO glad we did. Since she hadn't seen Brennan in a few weeks, she was constantly pointing out all the things he had learned, all the things he was able to do now that he wasn't doing just a few weeks ago. Brennan loves his developmental specialist and was full of smiles and laughs while he showed off his new skills. It was exactly what I needed to get myself back on the right track and focusing on the many positives instead of getting stuck on the negatives. Soon after Brennan's therapist left, I received these from my very thoughtful husband, which also really helped to brighten my day!
We're definitely back on the right track, working on the straw (among many other things) and knowing that he will get it....it just takes time and patience.

A Bad Day

2009-09-15T10:17:00.000-07:00

Last week I took Jenna to meet her 1st grade teacher in anticipation of the start of school. I found myself holding back tears while we were at the school. But, the tears weren't for Jenna - they were for Brennan. I feel confident that Jenna will like 1st grade, that she will learn and make new friends. I feel the same about Tanner and Parker. But Brennan? I'm not so sure. I honestly can't imagine sending him off to school. Will he like being at school? Will he be able to tell me if he doesn't? Will he be accepted by his peers and their parents? It feels so safe having him home with me where I can care for him, protect him, make sure his needs are met and that he is happy. To send him to school where someone else will be responsible for him seems unimaginable.

After we visited Jenna's school, we were out with a group of kids. Brennan was enthralled with the amount of activity and watching intently with his mouth hanging open, as he sometimes does. One of the kids looked at him and started laughing saying "look at the baby's mouth." He went on and on, laughing and laughing, saying "look at him, look at the baby, look at his mouth." I said something about Brennan being so in awe of all the excitement, that I thought he was probably trying to say "wow" or something like that. I didn't want to make a big deal out of it as I don't think the child was being mean spirited. I think he just noticed something that seemed different about the wat Brennan looked at that moment, found humor in it and wanted to point it out to his friends. It may not sound like a big deal, but it broke my heart. It was the first time that a child has made fun of Brennan for something that Brennan has absolutely no control of and it made me feel terrible. Really terrible.

When we came home that night, I was feeding Brennan and working on helping him drink from the straw cup and just started crying. We've been working on the straw every day for weeks and occasionally for weeks before that and he still doesn't get it. I put the straw in his mouth, wait for him to close his lips, then squirt some liquid into his mouth. The theory is that at some point he will learn that he needs to suck in order for the liquid to come out of the straw. But that hasn't happened. He just hasn't gotten the hang of it and I'm feeling so frustrated. I want so badly to be done breastfeeding, but obviously can't until he can get enough liquids from another source. I feel like I need a break - a few days away without the kids - and I just don't know when that will happen if I can't wean him. There are many other skills that we've been working on for much longer than the straw, but the straw is the only one that causes me frustration because it directly affects me and my ability (or inability) to have a much needed weekend for myself.

Basically, I had a big 'ol pity party for myself that night. I cried and cried and cried. I haven't had a night like that since Brennan was a couple of months old. So, maybe I was due.

A Sports Article?

2009-09-04T11:25:00.000-07:00

I'm admittedly not a big sports fan, but while doing my daily facebook check, I came across this article that my friend Patty had posted. It's about a father and son and their recent trip to a St. Louis Cardinals game. It is an incredibly touching story and one worth sharing.

Look at Those Teeth!

2009-09-04T11:07:00.001-07:00

Here's Brennan showing off his pearly whites!He got his first tooth when he was 11 months old. The next tooth came a couple of months later and he's been teething ever since....with tooth number 9 currently getting ready to make its appearance. They've all come in rather slowly and look like they'd be really painful, but luckily haven't seemed to bother him much.

Dave Hingsburger

2009-09-04T05:40:00.000-07:00

Most of the blogs I read are blogs of fellow moms of kids with Down syndrome.....with one exception. Almost a year ago, I came across the blog of Dave Hingsburger. He has worked in the field of disabilities for over 30 years and recently became disabled. He has an interesting perspective having been an advocate for others, now being an advocate for himself as well. His posts are;

heartwarming:
http://davehingsburger.blogspot.com/2009/08/shoes.html

heart wrenching:
http://davehingsburger.blogspot.com/2009/08/blog-post.html

thought-provoking:
http://davehingsburger.blogspot.com/2009/08/change-is-due.html

http://davehingsburger.blogspot.com/2009/05/pity.html

inspiring:
http://davehingsburger.blogspot.com/2009/05/kelly.html

He is an amazing advocate for people with disabilities and has a gift for putting his thoughts into words. Stop by his blog once in a while, you'll be glad you did.

i did it

2009-08-28T06:21:00.000-07:00

The lovely and amazing Jennifer (Mom to Diego, Mateo and Joaquin) started a hugely successful "i did it" campaign. Through this campaign, parents of children with Down syndrome across the country have purchased the t-shirts above to celebrate their children's achievements. In return, Jennifer is using the proceeds from the sale of t-shirts to purchase copies of Gifts 2 which she is distributing to local hospitals, genetic counselor's offices and pediatrician's offices. What a fantastic idea - combining the celebration of our children with helping new and expectant parents. Thank you, Jennifer.

I think Brennan knew this t-shirt was coming and wanted to do something really big for the occasion....so, after months of being totally resistant to putting pressure on his feet - he started pulling himself up to stand this week. We are so proud!

Learning to Ride

2009-08-21T10:39:00.000-07:00

I read an article in the Boston Globe recently about a camp that teaches kids with special needs to ride bikes. Soon after having Brennan, I read that this is a skill that many kids with Down syndrome are unable to learn. Riding bikes seems like such an integral part of childhood and I was sad to think that it may not be a part of Brennan's. I even read recently that as few as 10% of kids with Down syndrome can ride bikes. However, the camp that is discussed in the Boston Globe article says that after attending a week long camp, approximately 85% of the campers learn to ride. It makes me wonder how many other things that were believed to be impossible for our kids are, in fact, possible - it's just a matter of finding the right method of teaching.

Oral Motor Therapy

2009-08-13T19:28:00.000-07:00

My Mom and I attended oral motor therapy workshops at the NDSC convention a couple of weeks ago presented by Sara Rosenfeld-Johnson, a speech therapist/feeding specialist of 35+ years from Arizona. I can honestly say that they were the most interesting and beneficial workshops I have ever attended. Her therapy focuses on strengthening the jaw, lips and tongue. Sarah's approach utilizes straws, horns and whistles, among other things, to build muscle strength around the mouth and jaw which will, over time, improve a child's feeding mechanics (e.g., chewing and swallowing) and speech clarity.

Brennan has been seeing a speech therapist who specializes in feeding since he was about 10 months old. He progressed from infant cereal to baby food to table food and by the time he was 13 months old, we stopped working on feeding and started focusing more on speech and then on getting Brennan to drink from a sippy cup. Sara is strongly opposed to the use of sippy cups, as it encourages tongue protrusion. She supports the use of straws instead which encourage tongue retraction. To illustrate her point (and the proper positioning of the toungue when speaking), she asked us to put our mouths in the position used to draw liquid from a sippy cup, then to put it in the position used to draw liquid from a straw. Then she asked us to count from 1 to 20, noting the position of our toungue in our mouths. Saying almost every number required the tongue to be toward the back of the mouth as it is when you drink from a straw. None of the numbers (or really any speech for that matter) require the tongue to be over the front bottom teeth as it is when you drink from a sippy cup. These simple exercises, along with many other statistics and examples from the conference and personal experience with Brennan was more than enough to convince me that we need to get rid of our sippy cups and move to straws.

Continuing her theme about the effect of low muscle tone on mouth muscles, she observed that it is fairly common for kids with Down syndrome not to chew their food (or chew it incorrectly or ineffectively). I considered this for a moment but felt somewhat encouraged that since Brennan had been eating solid foods so well for the last several months, that he must have good jaw strength and be chewing his food well. I was wrong.

On the last day of the convention, we saw Sara in the exhibit hall and my Mom asked if she would watch Brennan eat and let us know if he was actually chewing. My Mom gave Brennan a bite of a banana, his mouth moved and then it was gone. I was watching proudly and then noticed Sara shaking her head back and forth as she said "No, he's not chewing. He's moving the food back and forth with his tongue and then swallowing it." She said he may be chewing solid foods, but was definitely not chewing the banana. We didn't have any solid/crunchy foods with us, but as soon as we got back to the hotel I gave him a piece of a veggie stick. Sure enough, he moved it with his tongue from one side of his mouth to the other, then swallowed it without ever chewing. Unfortunately, very few therapists work on strengthening this area of the body. Now I knew we had to start working on oral motor therapy.

When I got home, I looked on Sara's Talk Tools website under the "find therapist" link and saw that there were no therapists in Massachusetts. Then I looked at the "travel clinics" link and saw that Sara was going to be doing evaluations for two days in Rhode Island the following week. I called immediately and set up a time to meet with her. In the meantime, I took Brennan to his weekly appointment with his speech therapist/feeding specialist. I took various foods with me so she could watch him eat and voiced my concern about him not chewing. She agreed that he is not, in fact, chewing his food and said "but, he's eating, getting his food down safely, and getting the nutrition he needs." I was shocked. How could a feeding specialist not view chewing as important? I also asked about the sippy cup versus the straw (since she had been working on helping me transition Brennan to a sippy cup). She said either would be fine. I walked out of the appointment feeling discouraged and immediately called Brennan's EI coordinator to request a new therapist.

A few days later, we drove to Rhode Island to meet with Sara. As I was telling her about the experience with Brennan's current speech therapist/feeding specialist, she didn't seem surprised. Brennan babbles quite a bit which Sara noticed immediately and asked what his current speech therapist says about his babble. I said that she is always really impressed and encouraged by his many consonants, vowels and combinations. Sara said "but did she ever voice concern over the fact that he makes these sounds abnormally - with his tongue between his lips?" Uh, no. Then she said "It's all about expectations. It sounds like his therapist expects that he will have unclear speech and expects that he may not eat properly." In that moment, I realized that she was right. If a typical child had gone into the therapist and wasn't chewing, or was pronouncing all consonants with his tongue out of his mouth, I think she would have been concerned. But, since my child has Down syndrome she expects less of him. As we progressed through the evaluation, I was able to see how very weak Brennan's jaw is and how much work it was for him to actually chew.

On the way home, I felt so deflated. I felt like I had been failing my son. Taking him weekly to a therapist who does not see his full potential and who does not have high expectations for him. Following her advice and doing what she has suggested has quite possibly done more harm than good. However, I believe we are now on the right path. We have much work to do, but I feel strongly that this is the approach we need to be taking to teach Brennan to eat safely and correctly and to give him the best chance at clear speech.

The 3rd (and last) day of the Convention

2009-08-13T06:24:00.000-07:00

My mom attended a grandparents sharing session on the first day of the convention and met a father whose daughter is pregnant and just found out that her baby has Down syndrome. We had seen him a couple of times during the weekend, but had never met his daughter. Just before we were getting ready to leave for the airport, a few of us got our kids together to take some pictures. As I was taking the picture below, the grandfather-to-be and his daughter walked up to talk to my mom. I didn't see them walk up since I was taking pictures, but I heard the mom say "this gives me so much hope." Here she was watching four adorable kids smiling, sitting, crawling and being totally adored by their parents and others passing by. What comfort this must have given her as she could now picture her baby as unbelievably cute and full of personality instead of just as a diagnosis. To make this moment even better - she is from the same area as the other three kids in this picture - so she was able to make connections at that moment that will last a lifetime. What a gift.

Day 2 the Convention

2009-08-11T10:54:00.000-07:00

Better late than never, a continuation of my time at the NDSC Convention........There were three highlights to the 2nd day of the Convention. The first was being able to meet in person many moms that I have gotten to know through their blogs over the past year. They include: Jennifer from Three's a Charm, Monica from Monkey Musings, Danielle from Forever Better, Catherine from Hang on Little Tomato, Cori from Our Bundle of Joy, Lisa from Genetically Enhanced, Carol from Little Miss Magic, Chrystal from One More, More than One and Carin from Learning as I Go. It was wonderful to meet and get to spend time with this amazing group of moms. I also loved meeting their adorable children who really are even cuter in person!

The second highlight was a speech given by Christi Hockel, a lovely young woman who has Down syndrome. She was hilarious. She definitely has a gift for public speaking and had the crowd laughing out loud time and time again. She spoke of her many accomplishments which include having a drivers license, living in her own apartment, taking college courses and being on the NDSC board. But, more importantly, she talked about the many things in her life that make her happy......her big family (I think she said she has 35 nieces and nephews), her fiance who she will marry this fall, her job, exercising and volunteering in her community. You can tell without a doubt that she is happy, genuinely happy - and isn't that what we all want for our kids??

The third highlight was the dinner/dance. During the dinner, numerous awards were presented. All of the recipients have played a part in bettering the lives of people with Down syndrome. Two really stood out to me. First was Ryan Rotundo who has lead the NDSC's Brothers and Sister Conference for several years. He has put alot of time and energy into ensuring that the Brothers and Sister's Conference at the NDSC Convention is a success. He thanked his mom and dad for all of their help and encouragement, then thanked his sister, who has Down syndrome, for being "the best teacher of all." I watched him and envisioned the impact Brennan will have on Jenna, Tanner and Parker. I hope they will feel the way Ryan does about his sister. Then there was Mike Machado, a football coach who was inspired by his team manager who has Down syndrome to establish a football camp specifically for athletes with Down syndrome. They showed a clip of the kids at camp and the excitement they felt came right through the screen. I am so grateful for Mike and other like him who do not have a familial connection to someone with Down syndrome, but are making a positive difference in the lives of people with Down syndrome. The night ended with music and lots of dancing - I've never seen a dance floor fill up so quickly. It was the perfect ending to a very memorable day.

Day 1 of the Convention

2009-08-03T09:44:00.000-07:00

Brennan, my Mom and just returned from Sacramento where we attended the National Down Syndrome Congress' annual convention. It was amazing! I learned so much useful information from the workshops, was inspired by the self-advocate and other general session speakers and was able to meet so many wonderful families. I can't begin to express the joy I felt at seeing so many beautiful faces in one place. To walk into our hotels restaurant for breakfast and see a person with Down syndrome at every table was like walking into a dream. So far from our every day reality, but so wonderful.

On Friday, I attended a workshop on Oral Motor Therapy presented by Sara Rosenfeld-Johnson and can say without a doubt that this was the most interesting workshop I have ever attended. Everything she said made so much sense and seems incredibly beneficial for kids with Down syndrome. I can't wait to start the therapy with Brennan (I'll share more on this in a separate post). Then, I attended a Mom's Sharing Session for parents of kids from newborns through two years old. The session was hosted by Kathryn Lynard Soper, the editor of the book Gifts and the soon to be released Gifts 2. To have a place where 40 or so moms could get together in person and share their feelings about their children with Down syndrome was truly a gift. I learned strategies for managing time, heard views on the role and importance (or lack thereof) of therapies, and cried many tears hearing the emotions and concerns of other moms - being able to clearly recall experiencing the same very intense feelings and concerns when Brennan was born. The session was an hour and a half long, but we all had so much to share and wish we could have stayed there for hours and hours.

After the sharing session, we headed to the opening session where we were inspired by three self-advocates who spoke about their lives and their achievements. The opening session was followed by a reception with cocktail and hors d'oeuvres, but Brennan and I were both pretty worn out after a long day of travel the day before (which included a flight delay, a missed connection and an unexpected stay overnight in Texas), so we stayed at the reception for only a short while, then headed back to our hotel for the night.

Brennan at 16 months

2009-07-30T08:24:00.000-07:00

At 16 months old, Brennan:

-loves to wave "hi" and "bye"
-signs "eat", "more", and "all done"
-has a great appetite
-gets mad if someone near him is eating and doesn't share with him
-likes putting things into and takings things out of containers
-is so happy being able to sit that he still has no interest in crawling
-thinks playing in the water in his bath or at the beach is the most fun ever
-likes making music with his piano and maracas
-puts his hands up in the air when we say "so big"
-loves to clap for himself and others
-gives the best hugs
-likes stacking his stacking rings
-adores and is adored by his siblings
-sways back and forth when we sing to him
-throws toys when he's done playing with them
-has his 3rd, 4th, 5th & 6th teeth all coming in at the same time
-has the cutest little laugh
-is the perfect addition to our family

Summer Fun

2009-07-29T05:26:00.000-07:00

The Big Weight Check

2009-07-27T20:02:00.000-07:00

As you may or may not recall, Brennan's pediatrician was concerned with Brennan's slow weight gain at his 12 month well visit. During the time between his 9 and 12 month visits, he gained only 5 ounces. His thyroid was tested at that time and the results were within the expected range, so we knew that wasn't a factor. His pediatrician recommended we see a nutritionist, set up bi-weekly weight checks and start adding butter to his food. After some thought, I declined all three. Brennan has a healthy and well balanced diet - so I continued with his current feeding program, adding healthy fats (such as avocados with olive oil) when possible, and decided to only be concerned if he started to lose weight. I am happy to report that at Brennan's 15 month well visit he gained 2 pounds, 5 ounces. He's now tipping the scales at 17 pounds, 5 ounces and is measuring 29 3/4 inches. This puts him in the 25th percentile for weight and the 75th percentile for height on the Down syndrome chart. Although pediatricians can offer good advice, we moms know our kids best and need to follow our own instinct - and I'm glad that I did.

Got Teeth?

2009-07-14T06:51:00.000-07:00

Brennan has spent the better part of the last couple of months looking like this:

or this:

or this:
Yep, this boy is teething! I had read that the teeth of kids with Down syndrome often come in late and/or in an unusual order. I am here to confirm that both are the case for Brennan. His first two teeth came in at 11 months. They were his bottom middle teeth, which seemed like the usual order. Then at 15 months, his third and fourth teeth broke through and are his top premolars! I thought this would make for an interesting look since his top middle teeth hadn't made any sign of appearing. Then, this week, his top middle teeth started to break through. So, Brennan has alot going on in that little mouth of his. Somehow he hasn't let it bother him....he does lots of finger chewing, but little to no complaining. All of his teeth seem to be coming in veeeerrryy sloooowwllly - but I will hopefully update with pictures of his toothy grin soon.

Brennan's Evaluation and Crawling Revisited

2009-07-10T06:37:00.000-07:00

In a comment about Brennan's evaluation, Jessica from Ten Squares Three Squiggles said that her son's evaluation also included age equivalents, which would give a correlating age for each of the areas tested. Prior to Brennan's evaluation, I told his EI coordinator that I would prefer to not have age equivalents listed. I agree with Jessica's comment that an evaluation for someone (especially someone who automatically qualifies for services due to a diagnosis) should state what the child is currently able to do and their goals for the coming year should be. An approach that focuses on the positive, what our kids can do and what they should be working on next. Those are the important and relevant pieces of information.

And about getting ready to learn to crawl, Karen from The Bryant Family News said "watch what you wish for" because "once they go, there is no stopping them." I admit to having a little bit of mommy-guilt about this because I'm actually not that anxious for him to be mobile. I know what comes with a mobile 1 year old.....baby-proofing the house (again!), worrying if the older kids left a door open, having to keep an eye on the little one ALL OF THE TIME. Ugh, it makes me tired just thinking about it. Of course I work with him, I do what his physical therapists suggests, do all that I can to help him because I know it's important. But secretly (or not so secretly anymore) I'm a little bit happy that he's taking his time. Everyone involved believes he WILL learn to crawl and that he WILL learn to walk and I'll be thrilled to pieces for him when he actually does. But for now, I'm enjoying having one child that will happily stay in one place. One less person to keep an eye on at parties, at the playground, at the beach. I'm pretty sure that this will be the last summer that he'll sit so contently - so I'm going to enjoy every minute.

Our First Trip to the Special Olympics

2009-06-23T17:59:00.000-07:00

After attending a Special Olympics fundraiser at a friend's house a couple of months ago, we were invited to attend the summer games and be part of the "Be a Fan" tour. So, Saturday morning, Eric, the kids and I headed up to Harvard University for the Special Olympics Massachusetts Summer Games. It was an awesome experience.

We were with about 15 other people on the the tour. I had assumed the other "fans" would also be families of children with special needs, but they weren't. They were all people who just want to be a part of this very special organization. Maybe some had seen an ad like this one:

Or maybe they had a personal connection. One of the men on the tour said he was there because he wanted to encourage his kids (ages, 10, 10 and 13) to volunteer and thought it would be a great thing to do as a family. He told me he chose Special Olympics because he had a friend 20 some years ago with a sister with Down syndrome. He said the friend and his sister had an incredibly close relationship and had both left a lasting impression on him.

During the tour, we were able to watch athletes participate in swimming, gymnastics, track and field, tennis and volleyball. There were glowing smiles, enthusiastic thumbs up and high fives everywhere. We were also given a bit of history about the Special Olympics and also specifics about Special Olympics Massachusetts. There were 2,129 athletes participating in Saturday's games. I didn't hear the exact number of volunteers, but was impressed that a single Boston-based company had sent 400 volunteers. Wow!

For those of you interested, there was a great article in Sports Illustrated a few months ago that told the history of the Special Olympics, which was started by Eunice Shriver in 1968. What an amazing organization she had the vision to create. I can barely begin to fully comprehend the positive impact that the Special Olympics has had on millions of lives...not only of those that compete in the games, but also spectators and volunteers. I felt honored to be able to spend a day cheering for the Special Olympics athletes and look forward to many more such days...especially when I can be there cheering for Brennan.

And just for fun, here's my favorite commercial from the 2008 Summer Olympics in Beijing:

Brennan's 12 Month Evaluation

2009-06-18T09:45:00.000-07:00

A couple of months ago, Brennan had his 12 month evaluation from our Early Intervention provider. They are required to evaluate him every 12 months even though he automatically qualifies for services due to his diagnosis. During the evaluation they "test" him in various areas to see what he can and can not do. Truthfully, the assessment was somewhat uncomfortable for me. I've never had one of my kids asked over and over to do things they aren't yet able to do. And to do that to a baby seemed just wrong. At one point, they put a ball on his tray, put one cup upside down over the ball, then put another cup upside down on the tray. They moved the cups around and wanted Brennan to guess which cup had the ball under it. At 12 months, I knew this was way beyond his comprehension. It felt a bit like asking my 6 year old to do calculus. The thought that he will be tested in this manner on a regular basis is somewhat unsettling to me. But, it seems there's no way around it. Having done it from such a young age, maybe Brennan won't think much of it (a girl can hope, right?).

Anyway, back to the results. If a child scores 77 or below on any of the areas, they will be eligible for services. Brennan's scores were as follow:
Adaptive - 75
Personal/Social - 90
Communication - 69
Motor - 66
Cognitive - 106

While Brennan's EI coordinator was discussing the results with me, she would give me this sad look when discussing the areas where he scored below 77 and would give me a quick smile with the ones where he scored above 77. Honestly, I didn't have feelings of happiness or sadness with his results. He's happy and he's making progress....at his own pace. Whether he scores a 15 or 115, I know he's doing his best and I am so proud of him.

The "Stander"

2009-06-16T13:21:00.000-07:00

As I've mentioned, Brennan really doesn't like bearing weight on his legs. He will either lift his legs up or push his bottom toward the ground whenever we try to put him in a standing position. And putting him on hands and knees is impossible - he uses every Houdini move possible to get himself and keep himself out of this position. So, last week his physical therapist brought this lovely wooden contraption (which she calls "the stander") for Brennan to use.

He'll stand in it happily for about 3.2 seconds...then the squirming begins. We're definitely going to have to come up with other ways to convince Brennan that crawling and standing really are worth learning to do.

Brennan's First Boating Trip

2009-06-10T07:18:00.000-07:00

Last weekend, we took Brennan out on the boat for the first time and went over to one of the Harbor Islands (pictured above). He wasn't sure about it at first - mainly due to the really uncomfortable life vest he has to wear - but he got used to it and ended up really enjoying the trip. I picture many boating, lobstering and fishing trips in his future!

Delivering the Diagnosis

2009-06-05T06:09:00.000-07:00

When the doctors were explaining Down syndrome to us in the days after Brennan's birth, every bit of information they gave us was negative. Really, every bit of it. No wonder I was feeling such doom and gloom. Then I met and read stories from parents of children with Down syndrome and the stories from them were overwhelmingly positive. I try to imagine how differently and more optimistic I would have felt from the beginning if I had been given both "medical" and "real world" information in those first days. If a doctor and a parent could deliver a diagnosis - what a difference that would make!

Down Syndrome and Divorce

2009-06-01T18:03:00.000-07:00

One of the many "fun facts" that the doctors shared with us upon telling us that Brennan had Down syndrome was that parents of kids with special needs have a higher divorce rate than the general public. I didn't put much faith or thought into this statement - but Eric was really bothered by it. So, he did his own research and found that parents of kids with Down syndrome actually have a lower divorce rate than the general public. Interesting, isn't it?

Brothers

2009-05-28T10:39:00.000-07:00

I don't often get pictures of Parker with Brennan. Parker gives Brennan a surprising amount of attention for an almost 3 year old, but I rarely catch these moments on film. Parker spends most of the day running around like a tornado, pretending to be batman or saving people from the "hot lava" - but he makes quick stops throughout the day to talk to Brennan, give him a toy or give him a quick hug and a kiss. I finally captured a couple of sweet moments between the two of them. True brotherly love.

Brennan at 14 Months

2009-05-27T06:54:00.000-07:00

Our little man is 14 months old so, I figure it's time for an update.

He has been sitting independently for a while now and LOVES it. In fact, he loves it so much that he has absolutely no interest in putting weight on his hands or legs (which is going to make learning to crawl and stand pretty tricky!). Each week his physical therapist comes up with new things for us to try in order to increase his leg and arm strength despite his ability to quickly squirm out of almost any position other than sitting. The last couple of weeks, he has actually enjoyed being in his jumper-thingy and is getting better and better at using his legs to bounce himself.

His physical therapist also suggested we have him sit on a step stool which will force him to put pressure on his legs. I think sitting like this makes him look so much older.
He's a great little eater. He eats lots of fruits and veggies (either baby food, hand mashed or in small pieces) as well as chicken, veggie burgers, turkey meatballs, grilled cheese sandwiches, pasta, beans, cheerios....a good variety. I feed him mostly by spoon, but also let him feed himself. He's good at using his little fingers to pick up food and feed himself, but I can only put a couple of pieces of food on his tray at a time, wait a minute for him to actually chew and swallow, then put a couple more pieces on his tray. If I do it any other way, he ends up with a mouthful and I start get nervous about him choking. It honestly feels like he spend the majority his waking hours eating. As for liquids, he still relying solely on me. Yep, fourteen months old and still not interested in a cup or straw. I'm trying to be patient and keep the faith that eventually he WILL learn to drink from a cup! His speech therapist/feeding specialist is working on this with him and has suggested a couple of new cups to try (the honey bear and sip-tip cups for those of you "in the know"). So, wish us luck!

In the sleeping department, he's still doing great. He takes a 1 1/2 to 2 hour nap in the morning, a 2 hour nap in the afternoon and sleeps for about 11 hours at night. He goes to sleep easily and always wakes up happy. He often wakes up so quietly that the only way I know he's awake is if I hear him knocking his pacifier against his crib through the monitor. Sometimes I go to wake him and he's already wide awake, happily looking around his room.

In general, he's a really content baby. He rarely cries and if he does, he stops as soon as I hold him. He isn't thrilled by people he doesn't know well and will watch them intently with a very serious look on his face while being held, and then starts protesting and reaching for me. He definitely loves his family and especially his mom! He is such a sweet baby who makes me smile and fills my heart. I feel so fortunate to be his mom.

I'm not a saint, just a parent.

2009-05-15T07:42:00.000-07:00

My post yesterday made me think of one of my favorite articles. My friend, Gretchen, sent it to me soon after Brennan was born. It's titled "I'm not a saint, just a parent" and was written by Simon Barnes, a sport writer in the UK who also has a son with Down syndrome. And while you're welcome to consider me a saint - I really am just a parent.

A Good Life

2009-05-14T09:09:00.000-07:00

The other day someone asked how Tanner was feeling after having been sick recently with a fairly unusual virus. They said something to the effect of "God must really have alot of faith in you because he just keeps giving you more and more to deal with." Over the past year, a couple of other people have made similar observations such as "after all you've been through...." that seem to be subtle references to "hardships" of having Brennan. Granted, these comments are not from close friends or family, but it is clear that some people assume that having a child with Down syndrome is somehow extremely difficult or something to be pitied. This, of course, could not be farther from the truth. We may have worries or challenges that parents of "typical" kids don't, but as most families similar to ours already know, the joy of having Brennan in our lives is so much greater than the perceived challenges. The smiles, love and laughter that he adds to our home brings us so much happiness. Seeing the close relationship between him and his siblings, and meeting older kids and adults with Down syndrome and envisioning what Brennan's future holds brings us so much joy.

I recently read the saying "There's more than one way to have a good life." This is so true for me, for our family and especially for Brennan. The definition of a good life means different things to different people, but I can assure you that we have a good life....a very good life. And I believe wholeheartedly that Brennan does and will continue to, also.

Belated Birthday Cuteness

2009-05-05T10:20:00.000-07:00

Here are a few pictures from Brennan's 1st Birthday..........

He loved his first cupcake

(as evidenced by him grabbing all of the icing and stuffing it into his mouth)!

Jenna and Tanner helped Brennan open his presents.

Yes, he is in different clothes since we didn't open his presents until a month after his actual birthday....that's just the way things work around here sometimes.

Jenna showed Brennan how his new toy worked.

And I think he liked it! Happy, Happy Birthday to our Happy, Happy Boy!

Health Stuff

2009-05-01T06:16:00.000-07:00

When Brennan was born, the pediatricians spent a great deal of time telling us about the "maybe's" related to his health. Our doctors and most of the medical information I've read say "increased" risk of this, "increased" risk of that. But, percentage increases are rarely given. And, if they are, they are often so broad that they are not useful. Fortunately, most health concerns are correctable or can be managed.....taking medication for controlling thyroid levels, getting glasses to correct vision, getting ear tubes or hearing aids to restore hearing loss.

One of the scariest health concerns is a heart defect. And, although having to worry about your child's heart and preparing them for surgery would be terrifying, it is almost always correctable...often with less than a weeks stay in the hospital. The other scary health concern is cancer. Yes, an increased incident of childhood cancer. To me, this was the scariest health risk by far....since it was the one that could potentially take Brennan from us. But, the doctors and literature never told me what the percentage increase of was.

Over the past year, I have attended a couple of workshops about health concerns related to Down syndrome. The first was on ENT concerns and was presented by Dr. Sally Shott. She provided a ton of useful information, but one part of her presentation really struck me. The reported incidence of hearing loss in people with Ds is 38-78%. However, during Dr. Shott's research, she found that what is defined as hearing loss in this statistic is not what is used to define hearing loss in typical kids. I was shocked. Shouldn't the definition of hearing loss be consistent regardless of a diagnosis? She went on to say that, with proper medical care and placement of ear tubes when necessary, hearing loss in kids with Ds is actually 5-10%.

Additionally, after an entire year, I finally heard the actual percentage of kids with Ds that get cancer. My initial assumption was 20%, maybe even 30%.....I figured it must be a pretty high percentage since it was always one of the first things mentioned by both doctors and literature. At the workshop I attended last month, I learned that the percentage is actually 1-1.5%. And, although when it comes to cancer any percentage is too high, 1-1/5% is still a really low percentage. I think if this percentage were presented to new parents, instead of the totally vague "increased" risk - it would prevent a great deal of worry that I know I had when I heard and read this in Brennan's first days of life.

Susan Boyle

2009-04-29T05:58:00.000-07:00

I'm sure you've all heard of Susan Boyle by now. Her performance on the show Britain's Got Talent shocked and inspired. She has a beautiful voice and she is getting much deserved recognition. Her story reinforces the saying "you can't judge a book by its cover." This saying has been magnified in my life by Brennan. I know that with Down syndrome come many stereotypes - both good and bad. I know that throughout his life, people will pass judgement or think they know something about him simply by looking at him. One of my biggest hopes for Brennan is that people will take the time to get to know him. And through getting to know him, will see that he is so much more than his diagnosis. That he is a person with his own unique personality, interests and talents. So, thank you Susan Boyle for helping to open peoples eyes and hearts.

Jenna and Down Syn-Drum

2009-04-27T05:55:00.000-07:00

Last week, I took the kids to the Y for swimming lessons. On the way into the lesson, we saw a gentleman with Ds who works there. We stopped to say "hello" and the gentleman said "hi" then leaned down to say "hi" to Brennan in his stroller. He asked how old Brennan was, asked his name, and commented on how cute he was. We had to cut our conversation short since Jenna and Tanner's class was about to start. As we were walking away, Jenna said "Does he have the same thing Brennan has?" I was surprised that she made this connection since she hadn't met any adults with Ds before. She said she knew because people with Down syndrome (which she pronounces "down syn-drum") sometimes look similar. We had been to a playgroup for kids with Down syndrome the weekend before, so I asked Jenna if she had been able to tell which kids had Ds when we were there. She said that sometimes she could...except for Brennan, because according to Jenna, "Brennan doesn't look like he has Down syn-drum." He actually does - but to Jenna, he just looks like her little brother (who she likes to say looks just like she did when she was a baby!).

Quite a Month

2009-04-17T06:18:00.000-07:00

In the past month, Brennan has:

moved from his infant carrier into a big boy car seat,

gotten his first tooth,

gotten his first haircut

(compliments of my mom, who agreed that his comb-over was in serious need of a trim)

and perfected his pirate imitation.

He has also been to the cardiologist, otolaryngologist, opthamologist and pediatrician and has gotten the "all-clear" from each of them. Quite a month for our little guy, don't you think?

Boston Globe Magazine

2009-04-15T17:31:00.000-07:00

A couple of months ago, there was an article about Down syndrome in the Sunday edition of the Boston Globe Magazine. The article was primarily about the choices families are faced with as a result of prenatal testing. Two families in the article received prenatal Down syndrome diagnoses - one family had their baby and the other aborted. Since reading this article, I haven't been able to get this one sentence out of my mind: "Women and their partners use (prenatal) testing so that they can prepare to raise a child who will have profound medical, cognitive, and behavioral challenges, or so that they can end the pregnancy." I re-read that sentence several times and became more upset each time I read it. Profound medical, cognitive and behavioral challenges???? There are so many things wrong with this statement. The only part that is accurate is that of cognitive challenges.....yes, all children with Down syndrome will have some degree of intellectual impairment. Otherwise, there is nothing that ALL people with Down syndrome will have. Some will have health challenges, some will not. Some will have behavioral challenges, some will not.

While I was reading this article, I thought about the thousands of people without any personal knowledge of Down syndrome who, after reading this article, would define people with Down syndrome as having "profound medical, cognitive and behavioral challenges." What is also disturbing is that the Doctor who wrote this article is an Obstetrician....an Obstetrician who works specifically with "complex pregnancies including those with Down syndrome." He says he tries "to be informative, supportive, and non-directive" with his patients as they make their decision whether to continue or terminate their pregnancies. Based on this article, I find that impossible to believe. Indeed, there is much work to be done to educate people, especially those in the medical profession, on the facts about Down syndrome.

Beverly Beckham, grandmother extraordinaire, describes her reaction to the article here and echoes my thoughts and feelings completely.

A Great Big WOO HOO!

2009-04-03T12:47:00.000-07:00

In Brennan's first few days of life, an EKG and echocardiogram were performed as part of the protocol for babies with Down syndrome. I remember the doctors telling us that they saw a couple of defects, but nothing that needed immediate attention. They said these defects may correct on their own, but should be watched over time. So, when he was about 2 months old, we went for a follow-up EKG and echocardiogram and found that the two defects were still present. I admit to being a bad mom and not taking notes or even remembering the terminology or details of the nice little picture the cardiologist drew of Brennan's heart to explain the defects. I heard the words "nothing to worry about right now - come back when he's a year old" and that was it.

So, yesterday was the one year follow-up appointment. This appointment has been in the back (and sometimes the front) of my mind for the past 10 months. I often wondered if these defects were getting worse instead of better. I wondered if he would end up needing surgery. I wondered if these heart issues were contributing to his slow weight gain.

With a healthy dose of anxiety, we arrive at Boston Children's Hospital for an EKG and sedated echocardiogram. The doctor came in and explained (again - since I hadn't paid attention the first time) what defects were initially detected....a VSD and a PDA. She then took a good long listen to Brennan's heart, looked at me with a bit of surprise and said that she didn't hear ANY murmurs (or whatever else she was listening for). From this, she concluded that the echocardiogram would probably not be necessary. She called in the chief of pediatric cardiology who also had a good long listen to Brennan's heart and said "It sounds PERFECT." Could more beautiful words have ever been spoken??? It was the best news possible. Brennan was pretty happy with the news, too and smiled at every doctor, nurse and assistant that came into his room. What a perfect day!

Happy Birthday, Brennan!!!

2009-03-27T09:00:00.000-07:00

Today is Brennan's 1st Birthday!!! I honestly can't believe he's a year old already. This has been the fastest year of my life. And while the year has been a quick one, I feel like I have learned more than is possible in just one year. To think that one year ago, I knew absolutely nothing (really absolutely nothing!) about Down syndrome and now I know so much about all aspects of it....as if Down syndrome has always been a part of my life. I have spent countless hours reading books, articles and blogs, have attended conferences, workshops, classes and have been honored to meet many families who are travelling the same path. But, alas, today is supposed to be about Brennan and not about me.

From the day Brennan was born, he has looked directly into my eyes, like he could see straight into my soul. He reassured me that I was the right Mom for him, even when I wasn't sure that I was. I will never forget the first time he smiled at me and the tears I cried as I felt like he was telling me that everything really would be okay. He has such a calming effect on me and on others. My friend, Brooke, once said "if you're ever having a stressful day, all you need to do is hold Brennan and you will immediately feel a sense of calm." Even Eric, who is admittedly not a "baby person" loves getting one on one time with our little man.

Brennan smiles like he means it. He gets the biggest smile when he sees me - as if I'm a long lost friend he is so happily surprised to see. He is adored by his siblings and loves them in return. He can be somewhat shy and reserved around people outside of our family, but at home he just glows. He's the perfect addition to our family and I love him more than I ever thought possible. Happy Birthday to our sweet little ray of sunshine!

Cousins

2009-03-25T10:07:00.001-07:00

Eric's sister, Lisa, and her baby, Cameron, came to visit this weekend from California. We had a great visit and were happy to finally meet Cameron. Cameron is just 4 months younger (and 10 pounds heavier!) than Brennan. He's a really happy baby with the best belly laugh.
It was the first time I've seen Brennan really playing with another baby. I caught part of their interaction with both of these teething babies really wanting the teething ring. At first, they were both holding it......

Then, Cameron pulled it toward him - but Brennan wasn't giving up quite so easily (can you see Cameron's displeasure at his cousins actions??)Then Brennan pulled the ring away and Cameron put his hand on Brennan's shoulder as if to say "hey, give that back to me."
It was so cute watching them play. I hope we'll be able to get them together again soon.

World Down Syndrome Day

2009-03-21T07:08:00.000-07:00

Who knew? This time last year, I had no idea. But, today is actually World Down Syndrome Day (on 3/21 - since there are 3 copies of the 21st chromosome....cute, huh?). In honor of this day, I wanted to share a couple of videos that I think are important to watch, to think about, and to hopefully share with others. Both have to do with the word "retard/retarded" - otherwise known to me and many other parents of children with special needs as the "R" word. This is a word that I know I have used in the past. I didn't mean any harm by saying it - but I said it. Looking back, I wonder who I may have hurt without even realizing it. I imagine that many of you who use this word and other similar language don't mean any harm, but it is hurtful - so incredibly hurtful. Hurtful to the many people who have intellectual disabilities...and to the people that love them.

In my journey thus far and when envisioning my future with Brennan - the hardest part is the prejudice and ignorance of others that we will encounter. It hurts to my core....a feeling so intense, I've never experienced anything like it. So, please think before you speak. Realize how hurtful words can be. Talk to your kids about it, too. Because the more we know, the better we are. Hopefully each generation will be more caring, more compassionate, more understanding and more accepting than the generation before. We can all do our part in eliminating hurtful and demeaning language and making this world a better place for ALL people.

Hello Spring!!

2009-03-20T06:25:00.000-07:00

A few pictures as we say a fond farewell to winter.......

To Tell or Not to Tell

2009-03-18T08:57:00.000-07:00

When Brennan was born and we learned of his diagnosis, I wanted to share this news with his siblings right away. It was weighing so heavily on my mind that I couldn't imagine not telling them. Eric felt that we should let the kids get to know and love their new baby brother before discussing Down syndrome with them. After much discussion, I agreed with Eric. At the same time, we also agreed we would be open with our discussions about Brennan around the house and in front of the kids. If they asked, great - we would take that as a sign they were ready to know the details. Jenna is an especially inquisitive little girl who is FULL of questions ("why is the sky blue" is the tip of the iceberg with her). If Jenna hears a word she doesn't understand, she will almost always ask its meaning to put it in context of a conversation (even if the conversation is not with her!). The kids must have heard the words Down syndrome 10 times a day in those first few months....but they never asked what it meant. I thought that involving them with the initial EI evaluation and the physical therapist visits at our house would certainly illicit some questions....but it did not.

When Brennan was 6 months old, I was dicussing the lack of the lack of inquiries from the kids with my dear friend Amy. She gently suggested that it was probably time for me to discuss it with them. Although we discuss Down syndrome openly at our house, she thought the kids may feel like they can't ask us about it and it might be better to be more direct. At about the same time, Eric and I both felt that Jenna knew there might be something unique about her brother. It showed in her daily interactions with Brennan and the love she showered on him. When another child remarked to her at the playground that her "brother is small," she instinctively responded "well...I like him small." What a great big sister.

My friend Amy also suggested that I make sure they know that they can always talk to us about Brennan and that we will answer any questions they have with complete honesty. Soon after, I talked to them about Brennan and Down syndrome. I talked to Jenna first. I explained that it would take longer for Brennan to learn things, that he would need extra help - like that from the physical therapist - but also that he would learn to crawl, walk, talk. She nodded, then went on to the next question "so, what are we going to do today?" I asked if she understood what I had just told her and she said that she did. Since I "opened the door", she has taken the initiative and asked more specific question about Brennan and Down syndrome. I am happy to answer them as she learns in her own way what Down syndrome means for Brennan, our family and her role as a big sister. I later had the same conversation with Tanner, to which he responded simply "I know" - like he had always known, which I think he may have. I'll have the same conversation with Parker soon, but I don't think he's old enough to understand quite yet.

In the end, I am glad that we let the kids get to know and love their brother before discussing his diagnosis with them. It may not be the right approach for everyone, but it was the right approach for us.

This weekend I am attending a workshop presented by Dr. Brian Skotko called "What the Other Children Without Down Syndrome are Thinking: Lessons from Brothers and Sisters." I hope this workshop will provide information that will help me understand what my other kids may be feeling and provide suggestions on the best way to help them with these feelings.

As a side note, there are two children's books that we received as baby gifts that I think are great. The first one is Ruby in Her Own Time. It is not about Down syndrome specifically, but discusses in a very sweet way how we all learn to do things in our own time. The other book, My Friend Isabelle, is about two friends, one of whom has Down syndrome. It describes the many things they do - some they do the same and some they do differently and makes the point that "differences are what make the world so great." I would highly recommend both of these books - for kids with and without siblings with special needs.

Welcome Baby Graham!

2009-03-16T18:15:00.000-07:00

A belated congratulations to my sister, Shauna, her husband, Jay and their daughter, Camille on the newest addition to their family. Graham Hudson was born on February 9th and is so delicious.

Brennan and I went to New York recently to meet Graham. He is one cute baby and I hope that he and Brennan will be great friends.

THE Example of Down Syndrome

2009-03-09T07:00:00.000-07:00

When Brennan was about 4 months old, my Mom and I took him and his big brother Parker for a walk. Parker had just turned 2 years old. We were walking along a path near the harbor and the only thing Parker wanted to do was to play by the water. He absolutely would not walk on the path. After many unsuccessful attempts to keep him away from the water - I finally put Brennan in the sling and put Parker into Brennan's stroller. Needless to say, Parker was not pleased with this arrangement and proceeded to scream all the way back to the car. People passing by would look at him, then look at me with that knowing smile - understanding how 2 year olds can be. My Mom and I wondered, in a couple of years, if the same situation played out with Brennan as the screaming child in the stroller, would people look at us differently? As if to say "so, that's what it's like to have a child with Down syndrome." My assumption is that they would. It seems that people will always attribute his behavior, good or bad, to him having Down syndrome rather than to his own unique personality. Given that he may be the only person with Down syndrome that many of our friends and acquaintances ever know - Brennan actually will be THE example of Down syndrome for them. Seems like alot of pressure for one little guy - don't you think?

Does Sitting-Up = Spitting-Up?

2009-02-25T17:50:00.000-08:00

Ever since Brennan starting sitting up last week - he's been spitting up.......alot. Is he using different stomach muscles that are causing his food to come up and out of his stomach? Or does he suddenly have really bad reflux? Honestly, he spits up almost every time he sits (which makes me feel really bad about even having him sit as I'd imagine the spitting up is pretty uncomfortable). His physical therapist will be here tomorrow morning, so I'll start by asking her if she's seen this happen with new sitters. Brennan also has his 12 month well-visit soon, so I'll talk to his pediatrician about it then (if not before). And, of course, if any of you have any input - it would be greatly appreciated!

E-L-M-O

2009-02-19T08:22:00.000-08:00

After having just written about Brennan working on sitting, Brennan decided he was ready to start sitting all by himself! All it took was a singing and dancing Elmo to give him the motivation he needed. We've had the Elmo since Jenna was a baby. He sings "E-L-M-O" and does the corresponding arm motions/letters to the music from the Village People's "Y-M-C-A." What baby would not be entranced by that?! With Elmo singing and dancing in front of him - Brennan sat for at least five minutes, where before that he hadn't sat for longer than a few seconds. I was SO impressed! We're leaving for New Hampshire today and I think Elmo might just be coming with us. As annoying as that little red monster can be, if it helps keep Brennan motivated, I'll listen to his high pitched voice all day.

Milestones

2009-02-17T10:07:00.000-08:00

At almost 11 months old, Brennan is working on learning to sit independently. Typical kids learn to sit between 5 and 9 months and kids with Down syndrome learn to sit between 6 and 18 months. When Brennan was first born, I thought seeing his delays would be really hard - especially seeing kids his age doing things that he isn't doing. Much to my surprise, it isn't. I obviously notice the differences, but Brennan is on his own schedule and always will be. So, I will do my best to help him reach his next milestone, while focusing solely on him and not what others his age, even other kids his age with Down syndrome, are doing. I also try to keep things in perspective.....I mean, 10 years from now, will it really matter if he learned to sit when he was 6 months or 18 months? If he learned to walk at 12 months or 30 months? Nope. I don't think so. One thing I've learned as a parent is that time passes entirely too quickly - so, I'm going to savor every minute of Brennan being a baby.
There may be times in the future where his delays will make me sad, especially if Brennan seems frustrated or upset by not being able to do things he wants to do. But, he hasn't shown signs of frustration yet and continues to be very tolerant of his physical therapy exercises. So, when will he sit, crawl, walk? Only time will tell and we will be so proud of and happy for him when he does.

My Mom's Birthday

2009-02-13T08:00:00.000-08:00

Today is my Mom's Birthday. Six months before Brennan was born, my Mom moved from Ohio to Boston to be near me and my family. She lived in the same town in Ohio for 32 years. It seemed as if she knew everyone in town. In Ohio, she had many friends and a very busy social life. She gave that all up to be near us. At the time she moved here, we had no idea that Brennan would be coming into this world with "a little something extra." I believe that my Mom was meant to be here specifically for his arrival. She was with me every day of the first months after his birth. She sat with me in the hospital when I was recovering from my c-section, accompanying me to see Brennan in the NICU. She drove me to and from the hospital to see him after I was released, and spent countless hours at my house with us after he came home. I honestly don't know how I would have made it through that time without her. My Mom was always happy about Brennan's arrival into our family. She welcomed him with a heart full of love, just as she had her other six grandchildren. Brennan seemed to sense this from the beginning. He gave his first smiles to my Mom and smiled at her consistently for at least two weeks before I got my first smile from him. He still lights up when he hears her voice or sees her coming into the room. I am so grateful to have my Mom living near me. She is such an important part of my family's daily life and is an amazing mother, grandmother and friend. Happy Birthday, Mom!

Spring Fever

2009-02-12T22:05:00.000-08:00

Yesterday it was almost 60 degrees in Boston. It felt like Spring....almost. Even a 60 degree day couldn't melt the feet of snow we've had this winter. The kids were happy to be able to play outside without the many layers that are usually required. Tanner asked if he could put on his short and go to the beach, but settled for playing in our backyard.

As has been the case this winter, Brennan played it safe and stayed inside. He's only been sick once this winter and I'm hoping to keep it that way.

Mr. Everything

2009-02-10T10:47:00.000-08:00

That's my husband.....Mr. Everything. He honestly knows how to do, is interested in and/or knows something about everything. During the spring, summer and fall, he takes the kids lobstering, fishing, camping, frog-catching, kite-flying, bike riding, rollerblading, out on the boat, to the beach, and to the playground...most often doing two or more of these things with them each day. In the winter, he takes them skiing, skating and sledding. He loves sports and teaches the kids the ins and outs of baseball, football, hockey, etc. This year, he coached Jenna's t-ball team in the spring and soccer team in the fall. He also just love, love, loves to be with our kids. He honestly doesn't go anywhere on the weekends without at least one of them, even if he's just running errands.
Very soon after Brennan was born - I told Eric how lucky Brennan was to have him as a Dad. I know that Eric will love taking Brennan along on his various adventures, as he does now with Jenna, Tanner and Parker. I think it will be especially important for Brennan to have hobbies and interests that he can share with his family and friends. And, with Mr. Everything as his Dad, he will have endless opportunities to learn sports and find hobbies that he enjoys.

Occupational Therapy

2009-02-06T05:56:00.000-08:00

As I had mentioned before, Brennan currently sees a Physical Therapist once a week. The Early Intervention program that Brennan is part of has fairly rigid guidelines they follow regarding at what age various services or therapies are added. For the first few months, I felt comfortable with the fact that he was only getting physical therapy. Considering his very, very low tone - it made sense that he should focus on being able to hold his little head upright before starting to work on anything else. When he was about six months old and had good head and neck control, I started requesting additional services. In my opinion, the more help he can get through therapy, the better. Each time I requested a new service, Brennan's coordinator would very politely explain that he was simply too young. After much persistence, I was able to get Brennan to see a speech therapist - the catch being that I would have to take him to her office (instead of her coming to our house as most therapists do) since she is a contractor and not a Early Intervention employee. So, when he was 7 months old - he started seeing a speech therapist. I now feel that he may be ready to add another therapy, with Occupational Therapy being the logical next step. So, today Brennan had an evaluation with an Occupational Therapist. She played with Brennan for a while, gave me a few suggestions of things to work on with him, and said she was very encouraged by her observations of his abilities. However, in the end, she concurred with the coordinator that he isn't ready to have an OT assigned to him. She said an OT really can't work with him until he has good trunk control and is able to sit independently. It left me feeling frustrated and confused. Should I trust what they say and wait a couple (or more) months to start OT, or should I start pursuing therapies outside of our early intervention program? Will he be adversely affected by not having additional therapies? It's so hard to know the "right" thing to do. I want to give him every opportunity to learn new skills, but also want him to be able to be a baby and not totally overwhelmed with therapies....especially if they may not really benefit him at this point. Ugh! What's a Mom to do?

Winter in New England

2009-02-02T12:02:00.000-08:00

We're spending most weekends this winter up in New Hampshire. At 37 years old, I am just learning to ski and have taken my first few lessons. Jenna and Tanner ski with Eric almost every weekend and, at 6 and 4 years old, are probably already better skiers than I'll ever be. But, that's beside the point. What I keep wondering is - will Brennan be able to join in this family activity?

On Saturday, I took Jenna skiing by myself for the first time. As we entered the lodge in the morning, there were differently-abled people EVERYWHERE! People with one leg, with one arm, in wheelchairs, without sight. Jenna quickly noticed. I've been trying to teach her about differences. I've emphasized that people shouldn't be judged or limited based on what is perceived as different about them. This moment in the lodge was a great example of that. We were surrounded by a group of people who were probably told they wouldn't be able to do alot of things due to their differences. But, here they were on a snowy winter morning getting ready for a day of skiing. I felt so proud it brought tears to my eyes. I wonder if I would have felt the same way before I had Brennan? Part of me thinks I would have felt sad or sorry for this group of people and their differences. Or maybe I wouldn't have paid much attention at all.

As Jenna and I were getting ready to go, I did spot a girl with Down syndrome putting on her winter gear and ski boots. If Jenna hadn't been with me, I definitely would have stayed and followed her outside to watch her ski - but an anxious 6 year old tugging at my jacket made that impossible.

So, will Brennan be able to ski? Only time will tell - but we will give him every opportunity to learn if he's willing.

My Little Guy

2009-01-27T11:35:00.001-08:00

There is one other pretty obvious difference between Brennan and his siblings. When I say he's my little guy, I mean he's my little guy.

Brennan's sibling were skinny babies for about a month, after which time the rolls appeared in mass quantities. At 10 months, Brennan is still sans-rolls and has room to spare in his size 2 diaper! Here are the kids weights from their 9 month well-visits:

Jenna: 20 lbs. 4 oz

Tanner: 21 lbs. 4 oz.

Parker: 21 lbs. 9 oz.
Brennan: 14 lbs. 10 oz.

Without fail, when someone we haven't met before approaches and asks how old he is - their response to my answer is always "he's so small for his age." I'm never quite sure who I should tell that he has Down syndrome and therefor is predisposed to being smaller. I mean, does the person behind us in the grocery store check-out line really want to talk about Brennan's genetics? Either way, I actually love having a little baby for once. The others grew, and are continuing to grow, entirely too quickly.

Croup with a side of RSV

2009-01-23T12:24:00.000-08:00

A couple of days ago, I was going to post about how healthy Brennan has been. At almost a year old, he has had nothing more than an occasional runny nose. And with three older siblings who have had fevers, runny noses, coughs and stomach bugs this winter, I thought it was nothing short of a miracle that our little guy had managed to stay healthy through it all. Well, yesterday morning, Brennan woke up with a fever of 101. The fever went down with some tylenol, so I thought we were in the clear. Then he woke up last night wheezing and with a barking cough. He also had a fever of 103. I gave him some tylenol and took him into the bathroom for a good hot steam, but neither helped. His fever didn't go down and he was still wheezing and coughing. So, we headed to our local emergency room at about 2:30. Ends up my little guy has RSV and Croup. So, they gave him some oxygen and a steroid shot to help relieve his inflamed airways. Luckily, this worked very quickly....however, after the steroid shot, we had to stay at the hospital for 3 hours so the doctors could monitor him. We finally made it home at about 6:30 this morning....just in time for the other kids to wake-up! Eric went into work a little late so that I could get an hour of sleep. Needless to say, I am one tired mom today. But, most importantly, Brennan is feeling better and hasn't had a fever, coughed or wheezed all day....I'm keeping my fingers crossed that it stays that way! And even when he's not feeling well, he's still REALLY cute!

The Convention

2009-01-20T10:53:00.001-08:00

The National Down Syndrome Congress annual convention was held in Boston last summer. It was the first time in more than 20 years that it had been in Boston. Since we are only a 30 minute drive from Boston, and since it would probably be a long time until the convention was here again, I decided to go. By this time, my tears were gone and had been replaced with a complete and overwhelming love for my new baby. I was ready to learn as much as I could about how to best help Brennan meet his potential and knew that attending the convention was a great opportunity for both of us. At three months old, Brennan was one of the youngest babies there. So many parents ooo-ed and aahh-ed at him and many even asked to hold him. I'm sure he reminded so many of the parents of their kids when they were babies. It was so sweet. The convention was three days long and filled with workshops conducted by experts in various areas related to Down syndrome. The people who wrote all of the books I had been reading the past three months were there. I learned more than I had even hoped to learn that weekend. There were kids of all ages - babies, toddlers, up through teenagers and adults. There was a wide range of abilities among the people that I met, but I felt so proud of each and every one of them. I knew the amount of work and dedication it took for them to be where they were and I was full of pride and admiration. The only tears I shed that weekend were on my drive home after the last day of the convention. I had felt so at home, so full of love, so full of joy during the past three day.....surrounded by an amazing group of people who all share an extra chromosome. I feel so fortunate that the convention just happened to be held here last summer - otherwise, I don't know if I ever would have travelled to another part of the country to attend. But, after having attended once, I plan to make it an annual trip for me and my little man.

Early Intervention

2009-01-17T10:05:00.000-08:00

The main difference between Brennan and his siblings at this point is his low muscle tone. The best word I can think of to describe the effects of low tone is to say that he was "floppy." Where most babies lay with their hands clenched and near their face or chest, Brennan would lay with his arms laying flat out next to his side with his hands open. Through our state Early Intervention program, we have a physical therapist who has been coming to our house to work with him since he was about six weeks old. She comes over for one hour each week and works on strengthening exercises with him. She also gives me suggestions of exercises to do with him. I have been amazed at the progress he has made and I attribute so much of it to the help his physical therapist has provided. I do have books that I read that also offer suggestions, but having someone come to my house each week has been invaluable. And Brennan has always been such a trooper.....enduring countless hours of tummy time, working on the therapy ball....all without a complaint. He is truly amazing.

This is B at 2 months working on being able to lift up his head.

This is B at 4 months, propping up on his elbows.

This is B at 6 months, pushing himself up with straight arms.

Right now, we're working on getting the trunk of his body stronger so that he'll be able to sit independently...then on to crawling, walking, jumping, running. He'll definitely be on his own schedule as far as when he learns to do these things since his low muscle tone makes learning these things really hard work. I am, and will continue to be, immensely proud of each new skill he learns.

More Alike Than Different

2009-01-17T09:49:00.001-08:00

Many people have asked in what ways Brennan is different from his brothers and sister. The National Down Syndrome Congress currently has a campaign whose theme is "We're More Alike Than Different." Through this campiagn, they are trying to raise awareness of Down syndrome and to let the general public know that people with Down syndrome really are more like other people than they are different. I have certainly found this to be true of Brennan. The only difference so far has been his low muscle tone (which I will discuss in a separate post). Other than that - he really is just like his siblings were as babies. In fact, he may just be the easiest, most content baby of them all. He rarely cries, sleeps well, eats well and is just a happy little guy. He has one extra chromosome, but he also has the same 46 as everyone else!

The First Months

2009-01-15T22:00:00.000-08:00

After the initial joy of having Brennan home and being together as a family of six for the first time, I started on the biggest emotional rollercoaster of my life. I cried more during those first two months than I had in my entire life. I was consumed with worry for Brennan and his future. I really thought I would feel sad every day of my life for the struggles that he may endure. I cried in bed at night, I cried driving the kids home from school, I cried when Eric called during the day to see how I was doing, I cried sitting on the couch with my mom holding my sweet baby. During this time, I spent countless hours on the internet.....looking for hope, I guess. I found this hope through the blogs of other families that have children with Down syndrome. The common theme was that they loved their kids unconditionally, that they were so proud of every accomplishment, that most of the mothers had felt the way I did at the beginning, but the sadness had turned into abundent happiness and joy. And their family lives seemed so normal.....kids playing sports, families going on vacations...all normal family things. So, one day, the tears stopped. I realized that Brennan was going to be fine....he would actually be better than fine, he would be happy and have a great life - with friends, interests, hobbies, and a family that loves him unconditionally.

Going Home

2009-01-15T10:37:00.000-08:00

I went home five days after Brennan was born. Went home without my baby. Although I was looking forward to being back home with my husband and three older kids, I was so sad to be going home without my baby. Eric was still home on paternity leave at this time, so I was able to spend most of the next couple of days at the hospital with Brennan. My Mom would pick me up early in the morning and we would make the drive in to Boston to see my sweet Brennan. We would spend most of the day with him - then return home at night, at which time Eric would head in to see our little man. At this point, the diagnosis really didn't even matter - I just wanted him to be healthy and be able to come home with us. Two days after I was released from the hospital, Brennan was able to come home. Eric, Jenna and Tanner came to the hospital to join me in bringing Brennan home. It was a wonderful day. When we arrived home, my Mom and Parker were waiting for us and the sign that my sister had helped the kids make still hung from the mantle saying "welcome home mommy and brennan." The kids were thrilled to have their baby brother home and hugged, kissed and held him as much as they could. Smiles and happiness filled our home.

The First Days

2009-01-15T10:11:00.000-08:00

Honestly, the first few days after Brennan's birth were somewhat of a blur. When we were wheeled out to a recovery room, the pediatrician came to talk to us to explain what led him to believe our son may have Down syndrome. He had told Eric in the operating room that there was a 50% chance he did have Ds. Upon further questioning, he said that he would personally say there was closer to a 98% chance based on the physical traits that were present (single crease across the palm of his hand, small, low set ears, a large gap between the big toe and other toes, upward slanted eyes, flat bridge of nose, and low muscle tone). Brennan had come into the room with us for only a couple of minutes, then was taken down to the NICU. It was so hard to hear these things about a son that I couldn't even hold in my arms. I wish he could have been with me, that I could have started to get to know him while we were processing this information. I asked Eric to go with our baby and then keep me updated. So, alone I sat, worrying about my newborn son and hoping that the pediatrician would be proven wrong in his suspicions. During this time, Eric called my Mom (who was at our house with our other three kids) to tell her the baby had arrived and also of his suspected diagnosis. I believe he called his family at this time, too. A couple of hours later, I was wheeled up to my room. It would be a while more until I could get out of bed and be wheeled down to see my baby in the NICU.

Eric came back to the room and said they had taken Brennan to run some tests. Then Eric got his computer out and started searching online to find out what exactly Down syndrome was. Our hearts were aching as we prepared ourselves for what the doctor's were pretty sure the blood test would confirm. Eric was truly amazing. He was sad at the very beginning, but the sadness was so quickly replaced with the love every new parent has for their child. Within hours, after learning the basics about Down syndrome and what it would mean for our son, he felt the same love for Brennan that he had for our other kids and reassured me that we would find the same joy in him that we do with the older three. He talked about what we love about our kids....their unique personalities, the hugs, smiles and laughter, their excitement when they learn to do new things - and he knew that we would love all of the same things about Brennan. Although my heart was still heavy with worry - I knew that he was right.

After going to check on Brennan again, Eric came back to our room and said that Brennan was having trouble keeping his temperature up and also having trouble keeping his oxygen saturation levels where they should be. So, he would be in the NICU until he was able to maintain his body temperature and oxygen levels on his own. They were also sending him for an EKG and echocardiogram to check his heart as approximately 30-45% of babies with Down syndrome are born with a heart defect which requires surgery to repair during the first year of life.

I didn't call anyone from the hospital. I didn't quite know what to say and knew for sure I wouldn't be able to say it without tears. My Mom came early the next morning to see me and meet Brennan. She cried a few tears with me, but they were for my pain and not at all for Brennan. She has always embraced and celebrated him and continues to have the most special relationship with him. It was her words, a couple of weeks after Brennan was born, that helped to ease my worry and sadness. She said "I think we all need to focus on all of the things he will be able to do, instead of thinking or worrying about the things he may or may not be able to do."

My sister, Shauna, was planning on coming to meet Brennan a couple of weeks after he was born. But, upon hearing of his possible diagnosis, she, her husband and their daughter packed up their car and headed to Boston to see us. Having them come up to see us in the hospital meant the world to me and I will be forever grateful to them for coming to see me when I needed them the most. When she walked my room, we hugged for what seemed like hours, tears flowing freely. She came bearing gifts for my new son....toys, clothes, and the most amazing book for me called "Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives." It had the sweetest picture of a baby with Down syndrome on the cover and my tears continued to flow, knowing this was my baby.

Brennan's Birth Story

2008-10-17T09:59:00.000-07:00

We arrived at the hospital early on the morning of March 27, 2008 for a scheduled c-section. We were pretty relaxed as this was my fourth c-section - so we knew what to expect. We went through the pre-op paper work, signed consents, got my IV, etc. We even saw a friend of mine coming out of the operating room with her new baby boy as we were being wheeled into the operating room. As before, it was only a few minutes until I felt pressure on my stomach and was told he'd be out soon.....a bit more pressure and there he was! They held him up for me to see....he looked so cute and little. The only thing I clearly remember noticing upon seeing him was that his little tongue was sticking out and thought, "the little guy must be hungry already!" They then took him over to get weighed and be given an initial exam by the pediatrician. I told Eric to go over and see our new baby boy while they were finishing my surgery. I remember the OB talking to the nurses in a very hushed voice. Then, I heard the pediatrician talking to Eric and thought I heard him say "chromosome" and wondered why he would be talking to Eric about chromosomes while doing my son's exam. Then, Eric came over to me and I asked him if something was wrong. He told me we'd talk about it after they were done with my surgery. I told him that I wanted to know now. He very calmly told me that the pediatrician suspected that our new baby boy had Down syndrome. They would be taking him to the NICU for further observation and to have a blood test done to determine if, in fact, he did have Down syndrome. And this is where our journey began.....

Here we go.....

2008-10-17T05:06:00.000-07:00

So, here I go with my first blog entry. The purpose of this blog is two-fold. First, to let friends and family have a means for stopping in to see what's going on with our family of six. Second, and actually more importantly, is to be a resource for people receiving a pre or post natal diagnosis of Down syndrome. After Brennan was born, I spent many hours scouring the internet to find information about Down syndrome. My greatest source of comfort and inspiration came through reading blogs of families who have children with Down syndrome. Through these blogs I was able to see that their lives were just so normal - which is not what I thought our life would be when I was first told that the doctors suspected our son had Down syndrome. My hope is that someday, someone will come across my blog and find comfort in seeing just how normal our life is.