When I was a senior in high school I started working at my church one day a week, teaching kids with special needs. I was assigned to teach a 10-year old girl with Down syndrome.
Flash forward a few years to 1989 and the show Life Goes On started airing on TV. I enjoyed the show and was a faithful viewer.
In 1991 when I gave birth to my second son, Jared, and he was diagnosed with Down syndrome I knew that we would be okay. Life truly does go on...
Jared, 1991
Now 19, Jared has two best buddies that we get together with on a regular basis. Michael John, Kristen and Jared have been hanging out for the past five or six years. In addition to our weekly bowling gathering, we make a point of hosting the families for dinner on a regular basis. When having these dinner gatherings we have learned to accommodate the dietary needs of Michael John's mom, as she has Celiac disease.
Kristen, Jared, Michael John
Summer, 2010
Jared has always been our 'bread boy'. He thrives on routine and one of the comforts for him is to have the same foods for his breakfast, lunch and snacks each day - he'd have the same thing for dinner every night if everyone else in the house were willing to oblige. His breakfast regularly includes a bagel. His favorite lunch includes a sandwich, made out of a bagel. His afternoon snack includes a big, hot pretzel (he refers to it as his big PR). His preference for dinner has always been pasta and he requires a roll with his meal each night. Bread has been one of the main staples of Jared's diet. He has earned his nickname!
Several years ago Jared started to throw up, regularly. He would eat something and 10 minutes later he'd be in the bathroom throwing it up. For a time it became an almost daily occurrence. I was extremely concerned and we addressed this issue with several doctors. The decision was that Jared was throwing up simply because he was eating too fast.
Several months back, Jeff and I started to make some dramatic dietary changes for ourselves. We began to remove the vast majority of breads and refined sugars from our diet. We determined that Jared could also benefit from a reduction in bread. We started off slowly for him by removing his daily big, hot pretzel. We switched from eating pasta four or five nights a week to eating chicken. We managed to remove the roll with dinner too. At this point, he is now eating a small bagel for breakfast every morning and a regular bagel with his sandwich for lunch. That is about the extent of the bread in his daily diet now.
Last week he headed to the doctor's office for his annual physical. Annually he has his thyroid levels checked as he's been on thyroid medication since he was 6-months old. Having attended the National Down Syndrome Convention in Orlando in July, Jeff and I were a little better armed with knowledge this year. We asked the doctor to check his Vitamin D, Iron and run a Celiac screen on him. A few days later the phone rang and the doctor's office was requesting to meet with us to discuss Jared's blood test results. Turns out Jared's numbers for Celiac are through the roof and he is anemic as well!
I'm grateful for Jared's friendship with Michael John (and as a result, Michael John's mom) as we already know a great deal about what to anticipate. I'm grateful that we'd already started to make dietary changes therefore changing the remainder of Jared's bread habits will not be as challenging as it might have otherwise been. I'm grateful that we attended the NDSC convention this summer and learned about what annual blood tests should be run. I'm grateful that both Celiac and anemia are going to be easily resolved (and very likely the throwing up issue will disappear as a result).
As has happened so often in my life, my theory that there is a reason for everything is again proven true!
Hi Joan, I am an old co-worker from St Pats that knows your Dad. His FB led me to your blog. I just wanted to let you know that we have lots of Celiac in our family and I am also on the diet now. It is hard to accommodate but so much easier than 40 years ago when I was dealing with my niece then an infant. There is so much out there and online it is unreal. If you have any questions about this or ideas that we use, give me a call at 406-626-5288. I live in Frenchtown. Good luck with Jared. Elaine
ReplyDelete