A Brennan Update

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

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

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?

"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!!

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

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

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!

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

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

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

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

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.......

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

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!!!!

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

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

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!

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

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

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.