Wednesday, December 16, 2009
Monday, December 14, 2009
Friday, December 11, 2009
Tuesday, November 24, 2009
Monday, November 16, 2009
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.
Sunday, November 15, 2009
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.
Tuesday, November 3, 2009
Monday, November 2, 2009
Monday, October 26, 2009
Tuesday, October 20, 2009
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.
Monday, October 19, 2009
WELCOME TO HOLLAND
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.
Monday, October 12, 2009
Tuesday, October 6, 2009
Saturday, October 3, 2009
Friday, October 2, 2009
Monday, September 21, 2009
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.
Thursday, September 17, 2009
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.
Tuesday, September 15, 2009
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.
Friday, September 4, 2009
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.
Friday, August 28, 2009
Friday, August 21, 2009
Thursday, August 13, 2009
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.
Tuesday, August 11, 2009
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
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.
Thursday, July 30, 2009
-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
Monday, July 27, 2009
Tuesday, July 14, 2009
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.
Friday, July 10, 2009
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.
Tuesday, June 23, 2009
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:
Thursday, June 18, 2009
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.
Tuesday, June 16, 2009
Wednesday, June 10, 2009
Friday, June 5, 2009
Monday, June 1, 2009
Thursday, May 28, 2009
Wednesday, May 27, 2009
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!
Friday, May 15, 2009
Thursday, May 14, 2009
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.
Tuesday, May 5, 2009
Friday, May 1, 2009
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.