Today, I was going to write about something like some of the other disabilities that can come with autism, or explain what an ARD meeting is, or something like that, but to be perfectly honest, faithful readers, I am way. Too. Tired.
I can hear (one) of my father-in-law's voices in my head right now: You have to take care of yourself. If you don't take care of yourself you can't take care of your kiddos. If you were in a plane and it was going down and the oxygen masks deployed, who would you put it on first? You would put it on you first, so that you would be awake and alert enough to be there for your kids.
I can't count the number of times he said this to me. When you're a mom, and you get busy, you think, yeah, yeah...I don't have time to eat, or take a nap, or whatever...and sometimes you don't. You get wrapped up in so many things and you forget about some stuff you always meant to do, and you decide that the leftover mac and cheese looks absolutely divine when you're running short on time for dinner. Pretty soon you feel really crummy, tired, and then the crankiness sets in. Or worse.
It's hard for people to understand what a family can go through when you have a special needs child. Normal parenting requires a lot of time and patience. It requires a lot of sacrifice and you learn how to deal with frustration and anger and disappointment. There are also moments when you realize the person receiving that award, or spiking that ball, or acing that test...hey, they are here because of you, and that person running around with your DNA is going to grow up to be somebody someday. Having a special needs child-autistic or otherwise...requires a little more. You give up a lot. You lose expectations of how your life was going to be. You gain a different perspective.
I won't go into all the boring details of the two days of testing we endured with Logan. Basically he was in a room with a diagnostician. We were disappointed to learn an intern would be testing our son and not the actual doctor we had spoken with. The room had different things in it...toys, books, blocks, etc. And she would ask Logan to do different things. Perform certain tasks. She would observe him playing. And here is what was concluded:
Severe autism, speech disorder, and mental retardation.
And here is where I sincerely and honestly believe we are still in the dark ages when it comes to autism. We don't know what causes it or why it happens. There are all kinds of theories. But there is one solid fact about autistic children that is true across the board: they thrive in structured environments. They are most secure when they know what to expect and when. They need thousands of times more reassurance than a normal, well-adjusted child. So you are going to take this child, who is prone to anxiety, aggression, temper tantrums, defiance, who cannot tell you if he is mad or sad or uncomfortable...and you are going to put him in an unfamiliar environment with an unfamiliar person that he has never met before and have him stay there half the day, and ask him to perform a variety of tasks that he does not normally perform on a day to day basis.
Lots of people think Einstein had some form of autism and it doesn't take an Einstein to figure out that the above scenario is a flaming bunch of B.S. I contend that if you want to really know what makes a child like this tick, then you need to observe the child, at home, in their normal routine; get to know the child, and spend more than eight to ten hours trying to reason out responses from a kid who probably doesn't want to be there in the first place.
Am I touchy because someone said my son was mentally retarded? Perhaps. Yes. No one ever wants to hear THAT about their own kid. I really like the way our diagnostician at the school put it: That their test showed that he was academically deficient, but that they did not believe that was true. Their belief was that there was a lot locked in that head of his, but that they had to go by what he chose to present to them. The GOOD thing about going to that particular doctor was that finally, finally we had an answer to the question: is our son autistic? And the answer was: Yes. So we knew what we were dealing with and we could go to the school and definitively say, this is what the deal is. Help us. And they have. Except for one unfortunate year when he had a teacher that was very ill-suited to working with him, he has had an exceptional time in our ISD. And it has always been because the classroom was super-organized, the schedule was planned...sometimes down to the minute, literally, and his teachers were unfailingly patient. If they dreaded dealing with him one day, if they just didn't feel like handling my rambunctious boy one morning when they came into work, I never knew about it. They have and always have greeted him with a smile on their faces and a willingness to do whatever it took to make things happen for him.
So, do I think my son is "mentally retarded"? Well, I have to say, first of all, that I really don't like that phrase, applied to anyone. What do you picture when you say the word "retarded"? Something slow and stupid and dumb, something not worth your time, something that is silly and needs to be made fun of. Isn't it a common practice to say, "This is so retarded" or "You're retarded". It's become a mild, playful insult or a semi-polite jab at our friends. So, no, I don't think Logan is "retarded". Do I think that he has a lot of information locked in his brain that he can't get out due to his deficiency in communication? Yes. Do I think that he finds creative ways to cope with things that may seem strange to other people? Yes. Do I think he avoids work at school and home because he does not see the value or reason behind learning how to write letters and numbers? Yes. Logan has always done everything on his own terms. Do I believe that one day, he will walk into the room and sit down and say, "Hello mother, how are you this fine afternoon?" Hell, no. But if he did, I would be cool with that.
No comments:
Post a Comment