Friday, August 28, 2009

i did it

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, 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!

Friday, August 21, 2009

Learning to Ride

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.

Thursday, August 13, 2009

Oral Motor Therapy

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

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.

Tuesday, August 11, 2009

Day 2 the Convention

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.

Monday, August 3, 2009

Day 1 of the Convention

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.