When my son was diagnosed with ASD at 2 1/2 yo they told me things, like he is really high functioning, if I do the treatments they tell me by the time he is in kindergarten the average person isn't going to realize he's autistic. I thought how can that be? He didn't talk. His meltdowns were a terrible and common thing. He couldn't stand loud noises. He didn't do well in crowds. I couldn't touch him. I couldn't caress or tickle him. Nobody pinched my child's cheek or cucked him under the chin. But secretly I was relieved, unlike I had feared he wasn't bi-polar like my dad, or had ADHD like some of my siblings and many of my cousins. I grew up with that and I could not bare the thought of going through that with my own child.
So I did as I was told by the therapists. I brushed my child from the top of his head, to the tips of his fingers down to his toes twice a day. I remember the screaming and the crying, the meltdowns! But today I can rub my son's back, caress his cheek, tickle his tummy and he likes it. Even better he also will now wear clothes all day! May complain about how they feel on his skin, but the clothes stay on. They suggested ear mufflers, we still use them, I have learned to anticipate when they will be needed. We can now move about in crowds without so much worrry he will be over stimulated or the noise will overwhelm him and as my son gets older he can tolerate more. I look forward to eventually not needing those ear protectors every day. As for the meltdowns well he's a kid they still happen especially when tired. But as he learns to communicate they are less frequent and less distructive. On the advice of OT when he starts I wrap him in a blanket and just hold him. They are over quickly. When they suggested 123 Magic by Phalen as a discipline method I was skeptical but tried it. Three months of absolute HELL. But today I count 1 and he's paying attention, if I get to 2 it's rare and he doesn't conform gracefully but it is even more rare that I get to 3. I can't remember the last time it happened.
As for the communication, when he first started his Special Ed pre-k program he stopped communicating all together, not even the sign language he was using, and the potty training completely quit. I was in despair. Too many new things, he was overwhelmed. So in year two they moved him into a smaller group with more attentive aids and he blossomed. He talks now. Not as well as a 5 yo should but he can make his wants understood. He learned counting, colors, turn taking, became potty trained and some of his odd behaviors (stimming) started to disappear. Because of his progress they suggested a normal kindergarten class with an aid, then an afternoon of followup therapy. So a full day program with a regular class not just special services. I was again excited. Then I moved to a new district and started to worry again.
They too had a full day program planned. But with an aid in a full-day kindergarten class with pull out services. I went between excited and worried. I was concerned about the new routine, especially the class bells. But apparently the ear protectors are serving their purpose and he even made it through the tornado and fire alarm drills with only a little drama and trauma. First parent teacher confrence I waited anxiously to hear what behaviors and skills we needed to work on. Imagine my glee to find that my son is academically ahead of his classmates. He is doing first grade math. Reading at the high end of his grade level. Fine motor is still on the poor end but hey up in the average range. Behavior, wow no meltdowns at school, but he has turned to name calling, and deliberately getting into trouble to get into time out when he doesn't want to do something. He is apparently the first child his teacher couldn't get to come out of quiet time. He only needed the special ed quiet room twice and went there on his own and came out on his own. The big thing we apparently need to work on is problem solving. Apparently if there isn't an already established routine or a picture chart of steps he gets lost and does nothing until told what to do. But after hearing from some of the other mom's in the autism mom group I meet with. I couldn't share my joy. Things went so badly for so many of them it felt so wrong to gush about my good fortune.
Then the new IEP where this new district tells me what services they will provide. I know my son is a comletely different child from where he was assessed three years ago. But here they are giving tests and evaluating him. We went through and compared where he was 3 years ago with where he scored today. I could see the value of three years of OT, behavior therapy and skills training. 3 years ago they were right, if I did what they said by the time he was in kindergarten the average person meeting him for the first time would not be able to guess he is autistic. And now I get more. By the time he is Junior High it is unlikely that he will need any aids or pull out services. Hurrah! Plan is to work on skills for self direction this year. Next year have him fully intergrated into a first grade classroom sharing an aid with another student and by second grade maybe dispensing with the aid and another IEP in third grade. I am thrilled, filled with joy and depressed that I can't share this with the moms in my autism group because their children aren't doing so well. My son's best friend who is in 2nd grade doesn't even spend more than a whole two hours a day in a regular classroom. He spends most of his day in a special ed class and only attends mainstream class for special events and only two academic subjects.
While I am sad for the other moms I am doing a happy dance:) I can see the light at the end of my tunnel. It will be more work for me and my child than the average kid but we are going to get there.