I guess sometimes I feel like we are going no where fast. And all it takes is one reference point to let me know how wrong I am. We had Zach's 6 month appointment at the local developmental pediatrician this week. We brought along a therapist to discuss Zach and to meet our doctor.
Zach was a little antsy, but all in all, exhibited good behavior. One thing plagued Zach though. Although his appointment was at 9:30 in the morning, he had already had a 1/2 hour of OT and an hour of speech therapy that day. Due to our hectic morning, the boy had only a quick breakfast, and now he was HUNGRY. So he went rifling through the tote bag I bring along whenever I have the kids, looking for good eats while the nurses asked their routine questions. At some point, he ate every pretzel in the bag plus a brownie. The little one with the big appetite was still hungry. And then the doctor came in. I knew that Zach's concentration was on food and he was going to be fussy unless I managed to get something else to occupy his mouth. I pilfered my purse to find an organic lollipop. I did this all while attempting to answer the good doctor's questions.
We were talking about Zach and his program change from a preschool to a home program. At our last visit with Dr P, we had discussed looking into options where Zach would have preschool 1/2 day and itinerant services or somehow finding him a one-on-one aide for his program. As most of you know I just didn't seem to be able to make either of those options happen. As I discussed how we were doing pretty well with his home program, Zach continued to hound me, and I continued to unwrap the lollipop.
As I held the lollipop just out of reach, Zach made eye contact with me; he realized I was going to make him request it, and not just give it to him, even in the midst of being busy talking to the doctor. He said "lollipop" which I didn't accept, and then I continued to hold it and he finally said: "I want lollipop." and then I quickly gave it to him. I brought my attention back to the doctor who had a look of surprise.
I had no idea why he looked surprised. And he said to me "Did Zach just say a complete sentence?" and I said "yes". He then replied: "Well, I would say that it is quite a change from our last visit!" I hadn't thought about it, but it certainly is. Now mind you, this is something we work really hard on with him, and I guess knowing how much work went into this, I sort of don't find the enthusiasm that others might in hearing him utter this. I also know that he does not freely speak and that he only has a few sentences at this point in his repetoirse, all that have been discretely taught to him. He has surprised us with a few spontaneous sentences, but they are rare and not consistent.
Sometimes I let my expectations get in the way of the joys of the progress we have accomplished. This tends to diminish my hope, when it really should be a catalyst to it. I am so glad the doctor made me aware of this.
Tonight, I "caught" Zach with a book in his lap - a Thomas the Train book of course (what else would he choose for himself???) and he sat there saying "Thomas" "Percy" while pointing to them and spelling out some of the words aloud on the page. A myriad of thoughts went through my head, two images struck me the most: I thought about the expression on the doctor's face and recalled the fear we felt 2 years ago. I realized there is joy to be had in what he has accomplished and the potential that may one day be.
I think about what I want for Sophia. It is certainly different than what I would have wanted for her before we went through all this special needs stuff. I truly want Sophia to be happy. I also define achieving this happiness a lot differently. I am much less practical about it, yet more down to the basics. Practical worries? College tuition, career choices, number of friends, romantic interests. The things I strive for now? People to love and who will love in return, satisfaction and acceptance of who you are, gratefulness for being alive, a work ethic, food on the plate, a house over the head, clothes on the back and having things you enjoy in your life.
Sometimes I wonder if I have reached this place called acceptance I hear about. I am still hoping for everything, but I also know that my son's smile and his love of life have brought to me a peace that I never thought I would have. Is that acceptance of Zach's disability? Well, I think he will always have autism. But I will always try and treat it too. I will never do nothing about it, that just isn't part of my personality. But I think I do understand that those basic things that I referenced before really are what are important in this life. Maybe that is what acceptance really is; realizing what is important in this life.