Another Tough Blow For the Baldo Bunch-LONG POST

Today I had a meeting with Ryan's teacher. I asked for the meeting because I wanted his therapists to give me some ideas for home so that we could do a better job of scheduling therapy at home. Particularly his deep pressure therapy and physical therapy. The meeting went really well because we were able to talk one on one about Ryan specifically without all the "committee" people involved. I expressed to her our concern about Ryan's many needs and how so far, no one has given us a diagnosis for him or placed his needs in a category. We've always understood why, because Ryan's needs are very complex and all over the place and until now we thought impossible to categorize. However, for the first time EVER someone listened to me and agrees with me that there is much more to Ryan's condition than just hearing loss and delays caused by the hearing loss. I know that it's a fact that he is hearing impaired, but it just has never seemed to me, like that's where it all was coming from. I thought that maybe that was denial on my part, but moreso, it was just me wanting to know more so we could help him the RIGHT way. We have been told in the past that we should seek the services of a geneticist but never understood why. This is why I LOVE the team he has right now. They shoot from the hip but still with compassion and they have HUGE hearts for these kids. They don't waste a lot of time beating around the bush though which is a refreshing change from what we're used to. We talked extensively about the progress Ryan has made and how proud we all are. She then proceeded to tell me that his Tri-Annual review is next school year. This is when all tests are re-run for children like Ryan that enter the system at an early age. Basically not knowing what is going on with them except they are delayed enough to receive Special Education services. She hesitated and then placed her hand on my knee and said "Allison, I need you to be prepared for what will probably come of the testing. It won't change his care or his education plan but we will probably-almost 100% surely be able to pin down diagnosis by then. I almost think we could do it now but since he is so young, the testing might not be as clear as it might be next year. We are more than likely looking at Intellectual Disability-formerly known as Mental Retardation." Whew!! Honestly, it makes a lot of sense when I look at the formal definitions of it. It's just that I'm so ignorant on the subject that I didn't know anyone could have ID or MR without having Down Syndrome. ID and MR are characteristics that tend to exist in children with Down Syndrome but one can certainly have ID without being born with Down Syndrome. Initally this was a big shock, just hearing the words, but once I thought about it, I'm not so surprised. It doesn't change our Ryan one bit and he is still the crazy kid he's always been. It will just mean we all know how to better focus our efforts for him. It makes him easier to understand honestly. In my little bit of Univeristy of Google research the past 2 hours, I've learned that there is still a lot we need to learn about Ryan's specifics and that will probably happen next year when they do his review and when he's seen by a geneticist. In the meantime, we, meaning, all friends and family, need to educate ourselves and others on ID and accept Ryan for what he is, has always been, and will always be. . .our precious, WILD, brave, incredible little boy!! God is good! We could spend a lot of time wondering "why". But the honest to goodness truth of the matter is, we feel overwhelmingly honored for God to choose us to handle this situation with our child.