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Good Advice Helped to Get Us Here

It's been a little over two months for Ethan in high school. All in all, the transition has been pretty good. He had a few bumps the first few weeks getting used to the new routine - not unexpected. He's had some issues with the e-systmes (a lot of assignments are turned in electronically), but that seems to be getting better. Unfortunately, there is a shortage of speech therapists in our area (especially for lower income districts), and the district is not in compliance with his IEP services. They say they are working on it and have said they will make up missed sessions for speech and social skills... we shall see.

Still overall, he's transitioned and is happy and doing well in his classes. We are very encouraged. It's got me to thinking about the long road that brought us to this point, and I can't help thinking of all the good advice that I've received over the years. There's been many therapists, clinicians, educators, and parents of special needs children that I've come in contact with over the years, who now in hindsight, had significant contributions to Ethan's development and success. I'd like to talk about a few of them, and perhaps pass along some of their good advice to consider.

The first few years after the diagnosis were a whirlwind and steep learning curve. We really didn't know what to expect from IEPs and the school district. We also had an "n of 1", meaning we knew Ethan, but had no idea where he fell on the spectrum and how he was progressing compared with other kids. There was a contract behavior case manager those first two years and I think she recognized that Ethan was mastering skills quickly and progressing at the special day class (autism). She strongly suggested that we ask to have Ethan partially mainstreamed part time in the state preschool (socioeconomic/at risk preschool kids) that was on the same campus. I think this early success at partial mainstream with a 1:1 aide those first two years benefitted him greatly and prepared him for full inclusion starting in kindergarten. I don't know that we realized how quickly he could progress.

Sadly, about a year later, this behavior case manager was let go amidst a massive unilateral canceling of all autism and special educations services by a brand new superintendent. Of course all the parents were in uproar and threatened legal action. The new superintendent had no clue about IEPs and the IDEA law and didn't understand what he was doing was illegal. So he had to quickly bring in consultants and re-hire therapists. It was a huge nightmare but out of it we received in independent evaluation of Ethan's ABA therapy program. She was very experienced in the field and gave some good insight into how Ethan worked. She was the first person that we heard say that Ethan was 'sensory seeking'. This made a lot of sense and would impact how therapists would interact with him. She also suggested to move even faster in his therapy and move mastered skills to maintenance. At that point there was no one overseeing the therapists (many younger and with minimal experience) and it helped to give them direction to move as fast as Ethan would allow.

While Ethan is high functioning, I've met many parents of lowering functioning kids over the years. It's been a good influence to hear about how they cope and educate their kids. There was one woman that I saw for many years over the summers at our neighborhood pool. Her son was about 5 years older than Ethan and was very low functioning. He was non-verbal and would vocalize much like a dolphin when he was in the water. The first time I met her she was watching her son swim in the deep end. A lot of kids stayed away from her son, but Ethan was curious and would swim up next to him. They both loved being in the water. She saw me watching and said, "He's autistic, but very sweet." I told her that Ethan was on the spectrum as well and that's probably why he wasn't bothered by her son's odd behavior and vocalizations. Ethan (even to this day), doesn't really observe other's behavior as normal or not normal. It's a special way to go through life.

Over the next few years, I would hear about how her son was doing and her support system. But most of all I was struck by her expectations of him. He had to obey the pool rules or else he had to get out. So sometimes he would hang on the diving board or the deep end ropes (not allowed) or other infractions of pool rules and she would warn him once then get him out of the pool if he did it again. She talked about how even with the lowest functioning kids, that behavior is learned and that she enforced strict rules. She used visual schedules and reward charts to help with his behavior, and she didn't let him get away with things because he was autistic. She had a firm belief that even as a teenager, he was still learning. She talked about how there was such a strong focus on early intervention, but that it wasn't the end of the line when they reached 8 years old. Even as teens and young adults, they could still learn. She still worked with her son on language, and despite the fact that he only had a few scattered words, she pushed him to use them. She would say that just because he was non-verbal at 15 didn't mean that he still couldn't develop some language use.

Her advice had a profound influence on my thinking. I began to not think that the goal line was outgrowing the diagnosis. Ethan will always be autistic, but he will continue to learn and develop even as an adult. It also allowed me to expect more from him as a child.

Another parent that I encountered a few years back had a son that was higher functioning similar to Ethan. She had a great outlook regarding education of special needs kids. She believed that,'every thing you teach them as a child is one less thing you will have to pay someone to do for them as an adult.' It applied to all levels. If higher functioning kids can be educated to work full time or part time, then it lessened the burden on society to support them. But for even the lowest functioning kids, if they could tie their own shoes, make themselves a bowl of cereal, etc., - whether it's riding a bus or simply getting dressed themselves, those are all things that you won't have to pay someone to do for them as adults. It's solid thinking and I wish administrators in public education could begin to think that way.

I'm long winded today, but the last bit of advice that I got, I've shared before but must share again. Consider speaking with a clinician regarding medications. We waited until Ethan got a little older because we were cautious about medicating children, but the facts out there are that a lot of kids and adults on the spectrum benefit greatly from various medications. They don't treat autism, but a variety of medical issues that are prevalent among those on the spectrum. One leading psychiatrist in the field of autism research had an interesting off the cuff remark to me when I reported how well Ethan was doing on prozac (the 2nd SSRI we tried). He said, "I wish everyone on the spectrum could try an SSRI... or two." I don't think he meant it literally, but that he'd witnessed many on the spectrum benefit from finding the right SSRI and that it was worth trying.

There's been countless advice and food for thought that we received over the years. It's hard to pinpoint all the one's that have influenced our parenting, but I just wanted to pick out a few that quickly come to mind.

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