Being a parent of a child with an autistism spectrum disorder can be challenging on many levels. As a mother, we wear so many hats -- referee, cook, driver, housekeeper, referee, homework inspector, playdate organizer, referee. If you have a child on the spectrum there are a whole new set of hats to wear -- researcher, therapy coordinator, case manager, advocate, OT obstacle course designer, playdate social skills supervisor, the list goes on and on.
The positions and job requirements are endless and the first major assignment begins with getting your child diagnosed. I had to convince Evan's pediatrician there was something amiss and to recommend a pediatric neurologist. Some people start with behaviorists, teachers, therapists or psychologists. From the very beginning we are all charting our own course. After receiving a diagnosis we felt major relief that our concerns were validated and we now had a direction. The problem is there is more than one set of directions and no map to be found.
What type of evaluations should we get -- OT, PT, speech? Where should we go -- private, hospitals, school? Should we see a behaviorist? Who provides early intervention services? What type of school should my child go to? Social skills? Floortime? ABA? What does our insurance cover? You mean we have to pay for all of this?!? It is completely overwhelming and there is no one person guiding you. You have to do the research, gather recommendations, interpret insurance plans and figure out what is the best path for your child. And this decision isn't as simple as, "What color should I paint the bedroom?" This decision will be what determines your child's progress and success. No pressure, right?
This is what our plan looked like: private preschool with a one-on-one aide, one hour of speech and one hour of OT a week, a two-hour social skills group once a week, behaviorist observations as needed and an annual visit to the pediatric neurologist. After two years, it was time to make a change. Evan was going to be entering into his kindergarten year and we had a feeling we needed to make some revisions to the plan. Evan enjoyed his school, which was academically challenging, full of creative programs and staffed with the most caring and nurturing teachers. But nobody was directly addressing the areas where he needed the most attention -- social skills, behavior modification and independence.
We decided to have Evan evaluated through our public school system. There were evaluations in OT, PT, and speech; psychological and academic testing, behaviorist observations, a social worker-parent interview and numerous other meetings. As the testing went on, Evan's level of motivation and compliance waned. We had to attend meetings in a building with an elevator just inside the entrance. This was at the height of Evan's elevator phobia. He could read the sign, "In case of fire do not use elevator. Use stairs." This had him convinced there was a raging fire just out of view in the depths of the elevator shaft. The entire special needs staff were able to witness his severe adverse reactions to elevators and the resulting meltdowns every time we had to walk past one. In February, they recommended the full day ABA program. After another school observation in May, they suggested he attend half day ABA and half day mainstream class with an aide (we later found out it would be a three-on-one aide...very different if you ask me). They were pleased to see how well Evan was doing. Of course he was doing well in May. He had a whole school year of acclimating to his teachers, schedule, classmates and aide. And let's not forget that spectrum disorders are very situational. If they came to observe Evan at a different time or on a different day they may have seen a different child.
We decided to enroll Evan in the summer ABA program. It was a whole new world for him -- a new school, teachers and classmates, and a completely different program. On the first day of the second week his teacher approached me at pick up and said, "Evan is supposed to attend half day ABA and half day mainstream?" I said, "Yes, are you concerned that's not the right program for him?" She was very direct and said, "I don't think that's going to work. He can't do anything by himself. He is not independent at all. He has issues with crowds and noise and that class is going to have 25 kids and a one-on-three aide isn't going to help him." It took me a few seconds to get over feeling like I got punched in the gut. I was having reservations myself and didn't actually disagree with anything she was saying. "So what are our options?" I asked "A one-on-one aide?" "Well, the purpose of an aide is to help transition into mainstream and Evan is not there yet. If he had a one-on-one aide they would be giving him step by step instructions the entire day. He wouldn't be gaining independence and he wouldn't be engaging with the class." OK, I knew where this was going. "So you recommend the full day ABA program?" She said that was her recommendation and she'd have the behaviorist and psychologist observe Evan and we'd reconvene before the summer was over.
I'm not the type of mom who hides the fact that Evan has Asperger's. I'm not the type of mom who wants him in a mainstream classroom, just so I can say he's mainstream -- like that word makes his Asperger's less severe or makes Evan sound more "normal." He is who he is and he needs what he needs. We were prepared to sign off on the new plan. We were not prepared for how that plan would change everything...
