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.

The World of Possibility

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

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???

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!

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?