Thursday, February 25, 2010

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 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.

Wednesday, February 24, 2010

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 see the possibilities.