Journey of a Mom of two amazing children on the spectrum
Sunday, 11 November 2012
Nathan and I have an amazing bond. Of course Jack and I do too, but with Nate it's different. I feel this tremendous need to protect my little boy, to help him speak and express himself, since he isn't yet capable of doing it for himself. Think of those first few months of your child's life, when they couldn't speak and you had to rely on expressions, crying, gestures, etc to know what they wanted. No, we're not in that place anymore, but we certainly lived there for a very long time. And the language Nate has now remains limited, and his use of it does as well. So I have found myself in the unique position of continuing the "baby" phase for a very long time- or at least this aspect of it. There is no one on earth who can read this little boys wants and needs the way I can. There is no one on earth who can fulfil them as well or as quickly as I can. And Nate is well aware of that. He comes to me whenever possible, and then to daddy. It is apparent that he feels no need to communicate with anyone else, except his sitter and teachers when we are not there, and sometimes his grandparents. What a huge responsibility this is. On top of interpreting all of this, it is also my job to help him learn how to communicate more effectively. This is true of all parents, but when you put it in the context of classic autism, it becomes a whole new ball game. I was working at this very hard before, but now that we are participating in this "more than words" seminar, it's become a third full-time job. And it is the most difficult of the three by far.
As parents of infants, we take so much of their development for granted, we read the books, we celebrate the milestones, but we never really think that they might not come. Until it happens. For instance, last Friday my neighbor and I were walking back from taking the kids to the bus stop, and she said something like, "it's amazing how fast the language starts coming around 9 months" (she has a little guy). Then she clapped her hand over her mouth. I just smiled and said that's completely true. Hey, I watched it with Jack, and Nate. I know what she's talking about. I just never thought we would lose all of that progress and now be struggling with this same milestone over and over again. I was talking to Nate's speech pathologist about his words, and I mentioned that it feels like every time he picks up something new, something else drops off. She said this is extremely common in children with autism. For instance, the first new word he picked up when we started with the infants and toddlers program last year was ready, set, "go!". Guess what I spent this weekend working on with him? And it's harder this time- I could use a car rolling last year, this year I have to lie on my back and do it by lifting him up over my head with my legs on "go". He needs that incentive. Every single word we gain needs a similar motivator. And the consistency has to be well, consistent.
I am learning many new techniques in the seminar. And working my tail off on applying them in daily life. Really it feels like creative cruelty, or professional withholding. Poor Nate. But some of it is working. Every time he wants something, every single time he says more (which he knows used to thrill us by the way- I am sure he's pissed that it doesn't work anymore), it becomes a 5 to 10 minute process of "more what?" If it's cup or pops, we're golden. Anything else, we're screwed. The closest we get to a name is "and that, and that, and that". Which is a huge improvement, but helpful? Not really. If it's pretzels, I hold them out of his reach and wait, and wait. Then after a few minutes of nothing, I approximate the "p" sound, sometimes this gets some repetition, which is great. If not, then I say the full word. The point to the bag and say more.......if still nothing then I pick up his hand, physically point his finger to the bag, say pretzel like 50 times, and basically jump up and down like this is the best news ever. I have no problem with doing this in theory, it's just the whole 10 minutes to get a pretzel to the kid thing that is driving me crazy. Another technique is working on "choices". He usually can't verbalize which he wants, the actual goal for him is to see him scanning each item visually and eventually somehow indicating which one he wants. The scanning thing is huge, kids on the spectrum are in their own world, so observing what is around them is a big step. He is doing pretty well with this. Granted, his choices are pretty obvious- I hold up pops, and then maybe a sock. It's not like he's torn.
I'm applying these same concepts with books at bedtime, with songs at lullaby time, with parts of toys during playtime, etc. One other technique is to basically "put words in his mouth" while literally sitting at the same level on the floor as him with our eyes at the same height. So if I say "time to go night night" and he screams, I say "no night night mommy!" Help him express himself with words, and also let him know that I understand. I know these seem like really simple things, but when your child has little desire to communicate, little desire to use words, these interventions are a big step.
Tomorrow is Nate's first "big boy" IEP meeting. Blah. We already have the evaluation, they send it home with the child ahead of time so the parents aren't shocked. Good thing. Of course, as always, reading this crap was really comforting- yeah right. They put my boy's receptive language in the first percentile and his expressive language in the second percentile. They literally stated that if measured by what age level his understanding is, there has been no progress in his receptive language. At all. They put him at 11 months last September, and that is what the Child Find evaluator put him at last month. I call BULL _ _ _ _!!!!!! Either he had a bad day when they observed him in class, or they "over" evaluated him the first time. Because if I had told him "go bye bye" last fall he would have stared at me or more likely at the floor. Now he either throws himself on the ground in protest or if I say "go bye bye with mommy" he stands up and takes my hand. And this is true in every aspect of daily life. He knows and understands SO MUCH MORE than he did at this time last year. So for the first time, John and I, while still saddened by the numbers, were able to shrug off some of this evaluation. Because we know our son better than they do. And they are going to put the worst case scenario in writing in order to get him the best services available. And that's what I want for him. So I guess I just have to take it. And keep working, and working and working.