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.

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.

Brennan at 16 months

At 16 months old, Brennan:

-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

Summer Fun

The Big Weight Check

As you may or may not recall, Brennan's pediatrician was concerned with Brennan's slow weight gain at his 12 month well visit. During the time between his 9 and 12 month visits, he gained only 5 ounces. His thyroid was tested at that time and the results were within the expected range, so we knew that wasn't a factor. His pediatrician recommended we see a nutritionist, set up bi-weekly weight checks and start adding butter to his food. After some thought, I declined all three. Brennan has a healthy and well balanced diet - so I continued with his current feeding program, adding healthy fats (such as avocados with olive oil) when possible, and decided to only be concerned if he started to lose weight. I am happy to report that at Brennan's 15 month well visit he gained 2 pounds, 5 ounces. He's now tipping the scales at 17 pounds, 5 ounces and is measuring 29 3/4 inches. This puts him in the 25th percentile for weight and the 75th percentile for height on the Down syndrome chart. Although pediatricians can offer good advice, we moms know our kids best and need to follow our own instinct - and I'm glad that I did.

Got Teeth?

Brennan has spent the better part of the last couple of months looking like this:

or this:

or this:
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.

Brennan's Evaluation and Crawling Revisited

In a comment about Brennan's evaluation, Jessica from Ten Squares Three Squiggles said that her son's evaluation also included age equivalents, which would give a correlating age for each of the areas tested. Prior to Brennan's evaluation, I told his EI coordinator that I would prefer to not have age equivalents listed. I agree with Jessica's comment that an evaluation for someone (especially someone who automatically qualifies for services due to a diagnosis) should state what the child is currently able to do and their goals for the coming year should be. An approach that focuses on the positive, what our kids can do and what they should be working on next. Those are the important and relevant pieces of information.

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.