Tag Archives: dreams

Commencement

When I started this blog in 2008, I had this vision of the post I would write when Neil graduated from high school. Obviously, I would write about how incredibly proud I was of him, how much he had taught me through the years, how consuming my love was for him, and how hopeful I was for his future. And I would post a short video of him receiving his diploma. I imagined that one of my relatives would be filming so that I could watch my son, who had always tried so hard, harder than anyone I know, and struggled so fiercely. I envisioned that the person filming would film me for a few seconds standing there, crying as I watched him, and when I noticed that they were filming me I would hide my face and wave them away, saying, “Film him, not me!” And the person would zoom in and film Neil, focusing on his beautiful, serious face, self-aware of his accomplishments and determined about his future.

*

All his life Neil has told me, whether through behavior or words and often both, what he needed. And I have learned to listen (and be attentive). He would tell me, by screaming and bolting, that a sound or an environment was too loud, too overwhelming, and he had to get out of there. He would tell me by rubbing his lips until all the skin around his mouth was red and cracked that his anxiety level was too high. And later, when he had the words to do so, he would beg me to homeschool him because mainstreaming was too torturous with the bullying he endured. After a year and a half of homeschooling, he would tell me that he wanted to try some medication that would help him to regulate his behavior so that he could go back to regular school, because he never stopped trying. A year later, he would tell me that he felt he had learned to regulate his behavior himself and that he no longer needed the medication. And he was right.

Two weeks ago, after a discussion about the dismal state of his grades and the fact that he is not aware of any executive function skills class that he is supposed to be in, he told me that he thinks he needs to get a modified diploma. His anxiety level has been so high that he has been pulling out his hair incessantly for weeks. He feels completely overwhelmed. And he is becoming aware of his emotional delay. Just a few weeks ago, at the grocery store, out of the blue he said, “I think the reason that I still like stuffed animals and Lego is because in my heart I’m like someone younger than myself.” I tried not to cry at his brave, self-aware statement and told him that I think he’s right, that his teachers and therapists have documented it over the years. I gently explained to him that at first they assessed him to have a six-year emotional delay, but somewhere along the way he gained a year, and so at age sixteen, he is like an eleven-year-old. “Yeah,” he said. I could see the wheels turning as he processed this.

Here’s Neil at age eleven. How could I possibly expect this little boy to function as a high school sophomore? How could I think that the workload wouldn’t overwhelm him? That even though he was intelligent enough to understand it, he couldn’t handle the amount of it? Along with all of the social challenges and sensory issues he still battles on a constant basis? How could I think that the extensive support and assistance he receives both in and out of school would be enough? It’s not just about his lack of executive functioning. It’s about emotional maturity. How could I expect him to receive a regular diploma? That he would somehow figure it all out and navigate everything when he’s emotionally an eleven-year-old? How?

I’ll tell you how: Dreams. My son taught himself to read at age 3 ½, before he could even talk, and so I dared to dream. But don’t worry – I’m not throwing my dreams out the proverbial window just because he’ll be getting a modified diploma, because I now accept that that’s what he needs. I’ll still have dreams for my son, but those dreams are now realistically calibrated. What’s the problem with getting a modified diploma? It limits post-secondary educational opportunities, but with time and support perhaps in a few years we will be looking up online college degrees. And while I know that extended high school is a possibility for some students in similar situations, it’s not a good option for Neil. He’s comfortable at his high school, but he doesn’t want to be there any longer than necessary. He knows that option won’t work for him, and I agree.

No sooner had I indicated my support for his need to get on the modified diploma plan than he stopped pulling out his hair. I told him that it wouldn’t go into effect until everything had been written into his IEP at the upcoming meeting, and he understood. His relief, and his appreciation, was palpable. I had given him the autonomy to make a decision about his life and the respect and esteem that goes along with doing so. He knows himself. He knows what he needs. He always has.

*

For every bit of Neil’s progress over the years, I am truly grateful, and I am so proud of my son. But in all honesty it was painful for me to write this post. To know that after everything we’ve been through and all he’s accomplished, this is the best we can do. Mostly, it was painful for me to let go of a dream. Oh, I can say that I’ve “calibrated” my dream, but in reality, I had to let it go. And that’s okay. Because I’ve learned that my dreams for him are not necessarily his dreams for himself. And the fact is, when I look ahead to his graduation two and a half years from now, the particulars of his diploma will be different, but nothing else will. Someone will still be videoing it, I’ll still be crying, and I’ll still feel all the things that I would have felt had he received a regular diploma. I’m certain of that. And I’m certain that Neil’s beautiful, serious face will still reflect the awareness of his accomplishments, and his determination for the future.

Please

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 Neil 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 Neil’s current school, and she discussed it with the district sped coordinator. They declined our request, stating that Neil has made progress and “is capable with supports to maintain grades.” We have an IEP meeting scheduled next week to discuss this further. Neil’s father, who lives 700 miles away, will attend via conference call.

Yes, Neil 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 Neil’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 Little Boy’s Dream, Part 2

When Neil started wrestling two months ago at his high school, I was elated and optimistic. This, as I wrote previously, was something that he’d wanted for a very long time, and he made it happen. Surely that meant that this was the beginning of great things in his life, that this would be his niche, that by junior or senior year I’d be attending state championships and even nationals with him, filming him as he won matches, cheering, crying with joy that he achieved success on his own terms.  I could see it happening. I could almost feel it. I wanted it for my son. But I knew that his first season would be a time of learning, since he hadn’t wrestled before, and I had talked with him about not feeling bad if he lost a lot of matches his first season. I told him that I had heard from other parents that their sons lost a lot of matches their first season, but they just kept practicing, and by their second season, they were winning matches.

The season is now two-thirds of the way over, and he has not lost any matches. But that’s because he hasn’t been in any matches. He hasn’t been in any tournaments. The only time he gets to actually wrestle is during practice. At least, that’s what I thought.

I picked him up from practice last week, as I usually do. He got in the car, I asked him how his day had been, and he said, “Fine,” as he usually does. I pulled out of the parking lot and began driving home. And then he said something that made me want to sob.

“I think there must be an odd number of people on the team, because whenever it’s time to pair up for practice, I always end up without a partner.”

He had said it with trust and diplomacy, without blame, and without self-pity. But I could hear his underlying disappointment. I could hear the frustration he’d learned to suppress from years – a lifetime – of being left out. Of not being understood. Not being accepted.

A few weeks ago, it was proposed by his case manager and the coach that we reduce his time at daily practice because he was complaining of being too tired to do his school work, and I had agreed. But I didn’t know that he was being excluded during practice, and I wondered how long it had been going on. I took a deep breath.

“Have you talked to the coach about it?” I asked. As much as I want to jump in and be mama bear, I am trying to hold back and give him the support to advocate for himself.

“Yes. But I don’t remember what he said.”

“Well, maybe you could talk to him about it again, and suggest to him that if there is an odd-numbered amount of people, that perhaps a few could rotate. Since you leave early, you could work with someone first, and then when you leave, the other person would get their turn.”

“Hey, that’s a good idea,” he said with interest. “I think that would work.”

 *

Five days later, I ask Neil if he’d talked to the coach again, and if he’d been getting a partner at practice.

“Yes, for a little while,” he says. “But I’m starting to think that this being thrown around all the time is too hard on my body. Wrestling’s not how I thought it would be.”

This is new information, and part of me suspects that he’s trying to talk himself out of wrestling because he hasn’t been in any matches or tournaments. I remind him that the first season is a learning season for everyone, and ask him if he would like me to talk to the coach about making sure that he gets to do at least one match before the season is over. He declines my offer. I remind him that he’d been wanting to do this since he was a little kid.

“Yeah,” he says. “And I did it. I wanted to be on the high school wrestling team, and I am. That’s all I really wanted to do, besides inventing a time machine and being the first human on Mars.”

And it hits me – he just wanted to be on the team. That was his dream. Not finding his niche, or going to state championships or nationals – those were my dreams. And as long as he’s happy that he followed his dream, that’s all I really care about. I put my arm around him and tell him how proud I am of him. I ask him if he’d like to continue practicing the remaining four weeks of the season.

“No. I just don’t think wrestling’s my sport. It’s too painful. But I’m glad I tried it, despite the fact that it wasn’t what I thought it would be.”

I tell him that I’m glad that he tried it too, and then we go over what he should say when he calls the coach to tell him that he’s not going to do wrestling anymore. I remind Neil that he should tell the coach thank you for the opportunity to be on the team, and that it meant a lot to him.

It meant a lot to me, too.

Right on Schedule

The future will arrive when it’s ready. Whether it seems so or not, your life is right on schedule.                                       –clipped from an old horoscope, author unknown

I have spent most of today thinking about the future, specifically, thinking about the subjects of yesterday’s post. I sat at my desk for an hour last night writing it, carefully wording what I meant to convey, not sure if I was doing it right. What I neglected to say was this: Even if Nigel doesn’t progress any further, even if he hadn’t progressed to the point where he is now, I would be fine with that. I hope for his progress, but not because I want him to change. I am so happy with him the way that he is, the way that he’s always been. I hope for his continued progress because it would open more doors for him. It would enable him to experience more of life, and that is what he wants, and I want that for him. We all dream for our children. Autism doesn’t put an end to that.

And so this morning, having been up late thinking about what I had written, obsessing about the future, I came and sat down at my desk, my big L-shaped desk with all my projects spread out all over it, and my framed family photos of my loved ones smiling at me, and my soothing candles and bamboo, and my eyes fell on that little quote I had taped to the bottom of my monitor. The future will arrive when it’s ready. I needed that reminder today more than I usually do.

Whether it seems so or not, your life is right on schedule. And so is Nigel’s.