August 3, 2007 by Marj Hatzell
Not to be controversial and get on my soapbox and be snarky with my ole self, but I have discovered there is a such thing as too much therapy.
In the world of Autism there are many, many camps. I could spend days explaining the different philosophies, trainings, schools, methodologies, etc,etc. Since you’d all die of boredom and grow cobwebs on your legs and eyeballs from sitting in front of the computer too long to read this, I’ll make it brief. Let’s just say that sometimes people have to agree to disagree. No two children respond the same way to the same therapy. No two children with the same diagnoses have the same features. Occasionally things are similar, which makes it somewhat less frustrating for teachers, doctors and parents. The truth is that Autism is a big mystery. No one really knows what causes it, no one really knows for certain what works and no one really knows if there is a blanket cure/treatment/method that works for every child.
That being said, there are those out there (early intervention, doctors, soapbox parents) that think that “X” is the best way for autistic children and “Y” is the way you have to feed them and oh, by the way, make sure you give them “Z” supplement, because they view some of us as being uneducated. Because we don’t know how to Google that stuff and find it ourselves, after all. Listen to me, peeps: I’ve read just about everything. I’ve read books from all sides of the autism political world (yes, it is political). I’ve been on various websites from various points of view. I’ve seen doctors from all sides. I’ve been to nutritionists. I’ve been friends (and am friends) with parents from various sides of the autism world. I don’t just sit here all day thinking, “Lalala! The teachers are making Bugaboo ALL BETTER! I don’t have anything to do but sit here and eat bon bons and watch soaps and be lazy, while my husband works twelve hour days! Yay!” Let’s just say that EVERY waking moment is spent researching, calling specialists, filling out paperwork, visiting schools, calling teachers, finding resources and THEN I have a few minutes to myself, which is usually spent showering and catching up on housework.
We went through three grievance processes to get wraparound for Bugaboo. We asked for a TSS at home in the beginning, when he was in a 1/2 day program and went to a part time playgroup. He needed more. We needed more. But now he is in a full time classroom. This is Bugaboo’s schedule:
7:00 awake, dress
7:45 School Bus
3:15 school is finished
4:00 arrives home
6:00 eat dinner
7:00 bath, play with Daddy
Same morning routine, school is 9-12
12:30 home, eat lunch
1:00 falls asleep
5:00 play until dinner
Now, during the main school year Bugaboo is also doing soccer on Monday nights and Sunday afternoons. We are also adding Private speech and OT on Fridays. When he has school breaks his school TSS comes here for 1/2 the hours to keep skills shiny.
Bugaboo is FOUR YEARS OLD.
I don’t want to schedule him 60 hours a week. He is FOUR! How many four-year-olds spend there entire day scheduled to the max, doing intense school work, coming home and doing intense work at home and having barely a few minutes to play? How many of them Fall asleep from mental exhaustion because he just cannot do any more? My kid does. And I am sick of it.
We’ve decided to scale back on some of the TSS hours. It isn’t as though he is “cured” and doesn’t need them. Au contraire! He needs them more than ever. We are going to readjust them, however, to fit our needs better. Bugaboo needs to be a little boy. He is finally learning to play. He is finally learning to go off on his own and do something. I still have to supervise him when he goes to his room to play (or he might paint the room with the contents of his diaper) but he is learning to be with himself. He is learning when he has had enough and needs to be alone. He is learning to watch his brother play and then try it himself. He falls asleep at night now. He sits at the table to eat dinner. He can go on a family outing without us worrying if it is the last time we will see him due to his lack of danger awareness.
Plenty of people think we are crazy, including the behavior team. They don’t understand that we just want to give him time to be a kid, within reason. Let’s face it folks, it isn’t as though I let him run wild from the time he comes home until the time he goes to bed. I am with him the entire time. HE NEVER LEAVES MY SIDE. And when he does it is because he is making a bee-line for the playground and I my pants are down at my ankles because I dared to go to the bathroom. Yes, we still have plenty to work on but we feel we are beating a dead horse, so to speak (sorry for that, I cannot stand that expression). We feel that he is TOO tired and TOO cranky and quite frankly, he is just at his limit for the day. Pushing him through two more hours of therapy when he is exhausted, mentally drained and resistant is not going to gain him anything. Now, if he is just complaining and being manipulative, I know it. This is not manipulation. This is his way of saying, “Look folks! You taught me to play, now LET ME PLAY!!!” We are going to. So there.
He is four. He will have time later to add more stuff to his routine, should we feel he needs it. Right now he has plenty on his plate. Literally. He is eating some real food. He sits at the dinner table! HE. SITS. AND. EATS. We know we’ve done the right thing to this point. Now we are going to do it again. We are going to let him be a little boy for a while (remember, we are still doing other therapies and special sports and such). He is already a happier child. Bugaboo may not ever be like anyone else I meet, but that is ok. I can live with it. But dangnabbit, he will be happy.