Nathan will be starting the extended school year program in just a few weeks. He will go back to the same site he went to last year (but not the same school he goes to during the school year) and that got me thinking. How will these teachers and therapists, who likely worked with him last summer, view his progress? I mean, I have a hard time gauging it myself, but I see him every day. These people have gone almost a full year since they last saw him. What will they think?
And then I smiled. This year, for the first time, I would like to go in and see the looks on their faces. This year, for the first time, I know that they will be looking at a child that has made progress- and it will be my son! Is he still stimmy? Ummm, yeah he is!! Is he distracted? Oh yes. Does he notice the other kids? Rarely.
Did you notice I just said rarely? Last year that answer would have been NO. I have caught him looking at Jack lately- especially when they are swinging together. He will watch Jack’s face while he swings. And he smiles. OK, that makes me teary. This is one of their first positive interactions. John and I noticed it the other day, and we were both like “look, look!!!” HUGE for him.
And the words, oh the words!!! He can say anything he wants to. He can repeat any word that I tell him to. He can say mama, hi, bye, go, open, all done, eat, drink, no, I want, bath, I don’t want, “Lawrence”, “gwen”, night night, gra (for grammy), chicken, chip, cookie, pi (for pizza), meat, dog, fish, watch- and many more. And he gives the most incredible hugs and kisses. They will be stunned by all of this. I am stunned by all of this.
There is a much needed next step for Mr. Nate. And that is USING these amazing words that he can now say. At this point, if he wants something, he will still say “more”. And we have to go through a list of possibilities. If we say “eat” and that is what he wants, he will respond with “eat”. But when we get to the cabinet, he just says more again. If I say “cookie” and he wants cookie he will say it- if not, he literally pushes it away. Same with any other food. Now we have to get him to use these words spontaneously. It’s a big transition and can use his pecs as a tool- so he can hand us the picture of what he wants, or even point. Sometimes that works.
And like all autism parents there is that paranoid part of me. Is this going to go away? If I stop feeding him the words, will he lose them? He has lost so much so many times before. I can’t take watching it happen again. So it takes a lot of strength to withhold a word from him. His speech pathologist at Cisco Center, Miss Carla, will stand at the door with me and I want to say “open door” and make him repeat it. She wants me to just stand there and wait, or state “open door” and not do what I do, which is say “say open door Nate”- which then makes him do it. It is a very small difference and those of you with regular old verbal kiddos may be reading this and saying why the heck does it matter? I say to you- I totally get it! If someone had talked about this when Jack was my only child I wouldn’t have gotten it either because Jack would have stood at the door shrieking “open door” like 5000 times and interrupting our conversation. It is a totally different world. Carla is 100% in the right. She can view it from an objective angle. I on the other hand cannot. I view it from a fearful, anxious, maternal angle. I want him to make this leap so badly. But it took him sooooo long to get to where he is, and a bigger part of me wants to just continue to hear these words even more. I prayed for these words, I begged for these words. I sat in front of him saying them over and over and cried so many days because I didn’t hear these words. And now- because I am a good mommy and I love him- I need to stop trying to get him to just repeat what I am saying- I need to work on functional speech. Deep breath…ok, I can do this. It will have to be in small steps. I do not want to take away his current, relatively new, ability to communicate, even if it involves my assistance. We can start with areas where he is super motivated- food (he is our kid, ha). And we can take the next step.