Teen Autism

Remember that big IEP meeting that I mentioned we had this week? Yeah, that one. I’m at Hopeful Parents today, writing about how it went.

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We all have dreams for our children. Autism doesn’t take away our dreams - it only changes them according to our child’s abilities. And so, we still dream.

My dreams for Nigel have certainly changed over the years, but I still have them. And so does he. Some of those dreams have come to include the possibility of a post-secondary education, which seems out of reach given his academic challenges and the lack of local resources to address those challenges. So, we found a resource - a special school - that can teach him the skills he needs to be able to work independently, and I foolishly believed that all I needed to do was fill out a bunch of paperwork and enroll him.

I had no idea that the administration at his current school might not agree that this is something that he needs. I had no idea that they would be reluctant to change his IEP to reflect that his academic needs would be better met in a non-public school setting. I had no idea that the minor hoops I envisioned jumping through would turn into major hurdles.

The special school we would like Nigel to attend costs more per year than my entire college education did. Even when I sell my house I will not be able to pay the tuition out of pocket. However, we can receive funding if the change is made to his IEP, if it designates that his needs would be better met in a non-public school. I approached the special education coordinator at Nigel’s current school, and she discussed it with the district sped coordinator. They declined our request, stating that Nigel has made progress and “is capable with supports to maintain grades.” We have an IEP meeting scheduled next week to discuss this further. Nigel’s father, who lives 700 miles away, will attend via conference call.

Yes, Nigel has grown. He has come so far. But the fact is that the progress he has made has been behavioral and social. And while this is indeed wonderful, his academic needs are not being addressed. The grades that he “maintains” are heavily modified. The teachers do not even assign him homework! He can barely complete the class assignments, even with constant assistance. I know that they like him and care about him, but it appears that they are just pushing him through. If he cannot work independently, he will not be able to attend college. It’s wonderful that he receives so much academic support; the special education coordinator helps him every day to do his work. But he needs to learn the necessary executive function skills to be able to do it on his own, and I don’t expect him to learn that in a public school setting.

I know that some of the professionals who have worked with my son have read this blog before and might be reading this post. I really hope that they do. Because I want to say this to them:  Please. Please think of Nigel’s academic needs. Please think of the dreams that he has. Please give him the opportunity to utilize the best academic resource that is available. He needs more specialized instruction than what you are able to provide. I do not fault you for this, especially since he is only the fourth ASD student to attend your school. I truly appreciate all that you have done for my son. Please just do this one last thing for him. Please.

A quick look at my Amazon Wish List conveys what’s been on my mind lately: my son’s future. I mean, it’s obvious when you look at the titles -

• Becoming Remarkably Able: Walking the Path to Talents, Interests, and Personal Growth, For Individuals with Autism Spectrum Disorders and Related Disabilities
• Autism & the Transition to Adulthood: Success Beyond the Classroom
• Developing Talents: Careers For Individuals With Asperger Syndrome And High-functioning Autism
• Life and Love: Positive Strategies for Autistic Adults
• Adults on the Autism Spectrum Leave the Nest: Achieving Supported Independence
• The Autism Transition Guide: Planning the Journey from School to Adult Life

Now that Nigel is fifteen (and a half), we really need to get going on his transitioning plan. But how? How do you do plan for adulthood when your high schooler has the emotional maturity of a ten-year-old? He talks about wanting to go to college, which is great. But how can I realistically plan for that when he can’t handle the modified workload of his freshman year of high school?

Yes, Nigel can progress. He has proven that over the years. He is handling things now that I would have never thought possible, even three years ago. So it is within the realm of possibility that three years from now, he could be going through the admissions process for college. But as much as I believe in my son, that’s a big maybe.

You see, Nigel lacks executive function. And I don’t just mean that it’s challenging for him. I mean that it’s pretty much nonexistent. This is why he requires one-on-one assistance in his classes and two study period pull-outs every day to do his regular classwork (with constant assistance). Every advancement he’s made in Boy Scouts is because an adult (usually me) has walked him through it, outlined the work for him, and kept him on track. He is unable to do it himself.

And so, I worry if college is a realistic goal for Nigel. He is certainly intelligent - he’s just not able to do the work, nor is he motivated to. And college is a lot of work. There are no IEPs in college, no educational assistants hovering over him to keep him focused. There’s no modified curriculum. I know that there are programs to help people on the autism spectrum navigate college as far as housing and living independently. But they don’t write the students’ papers. They don’t do the work for them. That’s what executive function is for. Either you have it or you don’t.

I suppose that it’s something he could be taught, but that’s one of the things I tried to do when I homeschooled him for a year and a half. I taught him how to do math problems step-by-step, how to write essays, organize his thoughts, and outline. And it didn’t take. I don’t think his brain functions that way. Perhaps he wasn’t ready for it at the time, but it wasn’t that long ago, and at this point, time is of the essence.

All I’ve ever wanted for my children was for them to feel loved and to lead happy, fulfilling lives. I know that doesn’t have to involve college, but Nigel’s dream of being an astronaut does. And there are times when I wonder if all the years of therapy got him to a really good point, but it’s not good enough. We got him to the point where he can communicate verbally and go to restaurants and grocery stores and interact with people and make a grilled cheese sandwich and ride his bike to school and back independently, but he can’t work independently. And while I am so happy and proud and grateful that he is able to do all those things that were impossible for years, that glaring difficulty remains. Once more with feeling: he can’t work independently. And I don’t know what that means for his future.

Dear Nigel’s Teacher,  

At the Scout meeting on Saturday, I know that you were laughing good-naturedly when Nigel worded something in an awkward way, and that you didn’t mean any harm, but I wanted to clarify for you what I said in response, because, as his teacher, it’s important for you to know. Nigel did not start talking until he was five years old, and the process from that point on was very difficult for him. I described this in the information sheets that I gave to all of his teachers at the IEP meeting in September in the hopes that his teachers would be patient and understanding when he has difficulty expressing himself verbally. This is one of the many ways that his autism affects him.  

When I said, “He does the best he can,” in response to your laughter, I meant that sometimes he is unable to formulate his word choice in a typical way, but he tries. He has always had difficulty using pronouns correctly. Sometimes he states something that’s obvious. Sometimes what he says can sound odd or off-the-wall to others, but he cannot help it, just as [another student] cannot help it when he stutters. When [the other student] stuttered at the meeting, no one laughed. And I really hope that when Nigel says something in the classroom that is obvious or might not make sense that you do not laugh in response. This sets a negative example for his peers, many of whom have bullied him in the past. This is why I had homeschooled him previously. It would be very upsetting if the bullying started again, as it would affect Nigel’s academics negatively along with his well-being.  

As I said, I know you did not mean any harm by laughing. I just wanted to make sure you realize that he cannot help it if he says something awkward. He has always tried so hard to communicate, and when he says something that doesn’t sound right, he shouldn’t be laughed at. Thank you for the work that you do as a teacher, and for your patience with my son. I know that a student with autism can be more difficult to teach, and I do appreciate all of your efforts.  

Sincerely,  

Tanya Savko

I’m sure we’ve all done it at some point. We look through the photo albums, gaze at the images of our little ones and sit there, transfixed, in memory. We wonder - that thing he’s doing with clenching his fists - did that somehow point to autism? How he used to put his head back and say ‘aaahhh’ repetitively? The way he did the ‘5-point crawl,’ with his forehead on the floor? We just thought it was cute at the time, endearing. But he laughed! He smiled!

Of course he did, I remind myself. He still does. He was a happy kid then and he’s still, for the most part, a happy kid. School, high school, so far seems to be going well. Well in the sense that he’s getting where he’s supposed to be safely and on time, he’s not causing behavioral disturbances (to my knowledge), he’s not being bullied, and his new case manager is already working to meet his individual needs. Alas, his needs - that’s where the issues have come up.  

When we had our meeting in the spring, and Nigel made that comment about H.G. Wells and Jules Verne books, the special education coordinator had asked if weekly check-in meetings with him “would be fine.” She seemed to believe that because he is intelligent enough to read those books, he has fewer needs. I diplomatically explained that Nigel would need daily check-in meetings, that one of his areas of deficit is executive function. Last week, at the end of the first two weeks of school, his case manager emailed to gently suggest that she sensed that Nigel might need two daily check-in meetings, as well as aides in all classes. Oh, blessed email! Blessed case manager! I wanted to hug her through the Internet ether, even though it pained me to admit, readily, that she was right. He needs even more assistance than I had thought he would.

At his IEP meeting the next day, which Nigel attended, things went perfectly. I think it was one of the best IEP meetings ever. Nigel presented himself exactly how he needed to - instinctively, it would seem. There are times when he lets his best efforts propel him through a situation, but this was not necessarily one of those times. He answered questions, but he allowed himself to be himself - he spoke in his low, halting voice, with a lot of pauses and ‘eh’ and ‘hmm’ between words. He took extra time before answering, and he did not make eye contact. I know that at this point in his life, Nigel has the ability to communicate ‘better’ than this when he is motivated to. But the way that he communicated at that meeting was exactly how he needed to in order to communicate his needs. To show them that even though he is now ‘high-functioning,’ he has needs that must be met in order for him to function as well as he can.

And this school, which is in the same district as the terrible middle school that did not meet his needs, this school is going to meet his needs. They have already rearranged his schedule so that he can have two study periods a day with his case manager (love her). Not only that, they still allowed him to keep his electives and the same teachers for his academic classes, minimizing how much change he has to assimilate. In addition to this impressive scheduling feat, they have also assigned him full-time aides in all of his academic classes and a student aide in his electives. The really amazing thing is that I didn’t even have to ask for the aides.

It is somehow hard for me to go from not having any of Nigel’s educational needs met and fighting  - to having most of his needs met and not having to fight. I just can’t believe it. I’m stunned. I mean, of course I’m relieved and happy, but I don’t feel secure in it yet, which is sad. After being on the defensive for so long, it’s hard to let it go.

And it’s equally hard to let go of the questioning that goes along with the old family photo albums. The searching for signs, the wondering why, and how. The pain of seeing the birthdays without words. It’s all part of the experience of parenting a child with autism. But after a while, as I leafed through the albums, I noted that many of the pages were tattered, little rips here and there, some smudges. At first I was disappointed, but then I realized that those perceived defects were signs of enjoyment and appreciation. Our photo albums have been looked through a lot, and not just by me. My sons look at the photos and see the smiles, the good times, the birthday presents, the people who love them. They don’t dwell on their development or anyone’s diagnosis. They just enjoy the pictures, and, I hope, their memories.

I need to learn how to do that. And I also need to let go of the defensive parenting and not be skeptical of the long-awaited and hard-won positive educational setting. Oh, blessed school! My son has greater needs than we thought, but those needs are being acknowledged and met, and I don’t have to fight! Halleluiah!