Monday, April 7, 2008
Many of the blogs that inspired me to start my own are those of parents of babies with DS. I feel compelled to share some thoughts I have on Early Intervention as I read about others’ experiences with it. I don’t want this to sound preachy and with Leo still in preschool I am hardly a veteran, but I do want to share some general feelings about my own experience with E.I. There’s a lot I wish I’d known. And to be honest, I think people said something similar to this when I was in the thick of E.I. But like most things in life, sometimes you have to experience it yourself before you truly believe it and understand it all.
At 3.8, Leo has been out of E.I for almost a year. E.I. is an amazing, important program and I think our generation of kids will have very different experiences, in part because of the accessibility and access to E.I. for most kids. When Leo was first diagnosed it was a beacon for me in those dark, early months. I designed my days, my weeks around those visits with the cheerful young therapists. I sat cross-legged on the rug of our little Brooklyn apartment, gulping up their information. What should Leo be doing? What is he not doing? What can we help him do? I would do anything to help my baby. Not all the therapists were helpful and sometimes they were not all that tactful. I pressed them for details. How far behind was Leo? Would Leo be considered high or low functioning? When would we be able to tell? I stewed when the OT assured me he would be crawling any day and months went by with no progress. I seethed when the PT informed me that Leo “had to crawl” or else he would have a difficult time acquiring all the other tasks, including handwriting. Handwriting?
At 3.8, Leo is walking. And running. And jumping. And climbing (see above entry relating to his net ladder climbing abilities which are definitely more advanced than my own). I wish the new mom that I once was, in the early days of parenting could see Leo now. I think E.I. is a wonderful gift, but I also think it can be so dangerous to the sometimes fragile parents who are just a little bit terrified as they begin to navigate these unfamiliar waters of “special needs.” If I had a dollar for every therapist who told me Leo would do x and y when Leo was ready, I would be, well, I don’t have to finish that sentence. But guess what? It’s true. I just think E.I. is hard. It’s great when things are going well, it’s wonderful to have that extra set of eyes when your baby does something that he or she is “supposed” to be doing. But what about when she doesn’t perform? And when the plateau hits and sticks for what feels like months. Or a year (seriously, Leo was going to walk “any day now” for a year. And guess what? Shortly after he turned two he pretty much just walked across the room one day). I felt like I was constantly holding Leo up to some measuring stick. What should he be doing? Is he doing the right thing now? How about now? And does this mean he’s going to be, gulp, sort of “normal?”
In the end, I will always be grateful for the wonderful E.I. services that were available to us. When Leo was evaluated for preschool the therapists all agreed it was obvious he had received excellent early therapy. I’ll admit—I beamed. I blushed. I was proud of my boy. But I wish I hadn’t been so hard on Leo throughout all those services. And I wish I hadn’t been so hard on myself. I wish I’d known the outcome after the three years would be a delightful little boy with a boundless amount of energy who at 3 1/2 was beginning to write his own name, read his own name and count to 20! Who can climb up and down stairs (slowly, but still!) and climb into his own car seat. And did I mention Leo’s ability to say “Dora” with the most perfect diction you have ever heard?
Pictured above, my little Leo at about 11 months, demonstrating his excellent sitting skills. Go Leo!