Category Archives: Education

Commencement

When I started this blog almost three years ago, I had this vision of the post I would write when Nigel 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 Nigel, focusing on his beautiful, serious face, self-aware of his accomplishments and determined about his future.

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All his life Nigel 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 Nigel 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 Nigel. 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.

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For every bit of Nigel’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 Nigel’s beautiful, serious face will still reflect the awareness of his accomplishments, and his determination for the future.

Mainstream

Nigel (in the car on the way to the video store):  What does ‘mainstream’ mean?

I should have known it was coming at some point. But I didn’t. And I felt like a deer in the headlights.

It’s a simple enough word, perplexingly defined by Webster as “the predominant current or tendency of a movement, discipline, etc.” But it’s the secondary definition that we special-needs parents know all too well: “v.t. put (handicapped students) in regular classes.” Yes, that’s exactly what’s printed in my desk dictionary, complete with the parenthesis. And I cringed when I checked it later, wondering if Nigel had heard or read something similar, causing him to ask. Wanting to hear it from me. Wanting to see what it meant to me, perhaps. Wanting to know what it meant for him. It’s something that we special-needs parents mention at IEP meetings and in blog posts and annual Christmas letters (well I do, anyway): Our hopes of mainstreaming. Our relief and pride when it happens successfully. Our sadness and frustration when it does not. I am unfortunately too familiar with the highs and lows of mainstreaming. Sometimes I think we give that word too much power.

Back to the car. Back to me wondering what to say in the second after he posed his question. I figured I’d keep it general, didn’t want to get too heavy. After all, we were going to the video store. The possibility hit me that perhaps he had read the word in the context of movies. So I tentatively forged ahead and said, “Um…mostly it means ‘typical.’ Like with movies and books – what most people are watching and reading. It’s the usual stuff.”

“Okay,” he said, his way of indicating that he understands something. A few minutes later we arrived at the store, and the conversation didn’t continue.

But the box had been opened, and I couldn’t just close it back up. We needed to discuss what was inside. He’s a sophomore in high school (!), he has started attending his own IEP meetings, and he should know. He should hear it from me. So a few days later (processing time for both of us), I went to talk to him in his room one evening, when I knew he would be relaxed, and I broached the subject. I asked him if he remembered asking me what ‘mainstream’ meant, and where he had heard or read it mentioned before. He confirmed that his question was in regard to movies, and then I told him that there was another meaning of the word that I wanted him to be aware of because he might hear it at his IEP meetings or read about it somewhere. I told him that when students have autism or other differences that affect their learning, “mainsteaming” them means that they are taught in the same classroom with other students, but that they often have aides for assistance. I briefly told him of his own mainstreaming history. I told him that some students have difficulty being mainstreamed and are taught in smaller classrooms or homeschooled, and that they are just as important, just as intelligent. They just have different educational needs. I told him that mainstreaming isn’t best for everyone. That sometimes it wasn’t working for him either, and that was okay. We just had to find something that worked for him. And we did, whether it was full-time homeschooling or part-time mainstreaming. It was all okay.

And gradually, over the years, that powerful word lost its influential quality.

Mainstreaming is not about the right way or the wrong way, superior if you are or inferior if you aren’t. It’s not the Holy Grail of education, as I mistakenly believed in years past. I remember the Christmas letter I wrote ten years ago, how I unwittingly glorified mainstreaming by crowing about how Nigel, age five, was finally starting to talk, and I wrote, “We hope to have Nigel mainstreamed for Kindergarten next year.” In fact, he wasn’t mainstreamed until second grade, and that was difficult at best, even with a full-time one-on-one aide. He wasn’t mainstreamed for most of middle school either. And here’s the thing – he’s a better person for it. He has not had a typical education, but he has had a well-rounded one. He has learned just as much, if not more, and he is happy. And I am just as proud of that.

On Our Mark

Okay. I think we’re ready now. The supplies have been purchased, the backpacks have been packed, the fees have been paid, the papers filled out. The anxiety has set in.

Yes, there’s nothing like the start of a new school year to ramp up my stress level. I know – everybody’s busy running around, getting the ducks in a row, the usual for those of us with kids in school. For me, it’s not really about that. It’s that year after year my PTSD kicks in every time the phone rings. And I’m referring, of course, to the years and years of teachers and school administrators calling me at work to tell me that my son is having behavioral issues and I must leave work and come to get him. The phone rings and I instantly tense up. In recent years, with caller ID, the tensing doubles when I see “school district” on the screen. God help me, it’s a horrible feeling. It’s an alarm, a pre-panic, a dread. And it used to happen on a regular basis, but especially at the beginning of the school year.

Today, the first day of tenth grade (!), there were no calls. That doesn’t mean that there won’t be any later, I know better than that. But it’s a good start, and I’m grateful for it. Here’s what else I’m grateful for: a very positive IEP meeting last week. Some of you might recall how the last IEP meeting went, and how much I had prepared for it. I prepared for this one just as much because it was just as important. In fact, in some ways, this one was more important. The meeting in May was about getting the school district to agree that Nigel’s academic needs, since he could not work independently, would be better met in a specialized setting. They didn’t agree, but they didn’t offer any alternatives.

So I came up with an alternative on my own. Over the summer, I researched various programs in public high schools with good special education departments. I thought, what are they doing that we could emulate? I printed out course descriptions from some of those schools that included specialized classes designed for students with autism to teach them the executive function skills they need to be able to work independently, which is exactly what Nigel needs. I also researched various books written for educators on how to teach executive function skills to students like Nigel, and I printed out descriptions of the books off of Amazon. I went to the IEP meeting, print-outs in hand, and proposed that the school create a weekly class on executive function skills for Nigel and any other students who would benefit from it (and of course there are other students who would, even if they do not have an ASD).

And they said yes. They said yes not only to meeting my son’s needs, but to setting the precedent for future ASD kids at that school (and, as we know, there will be more). They said yes to being an even better school.  They said yes to the other kids who really need some extra help with learning how to be a good student, autistic or not, but whose parents may not lobby as hard as I do. They said yes.

And this mom is feeling a lot less anxiety, a lot less dread. In fact, I’m feeling pretty excited about this school year. I’ll even try not to cringe when the phone rings.

Some Good

Like most people, when I was in school (mostly college), I dreaded exams. I much preferred those classes in which the final exam was a paper or a project. Because as much as I could prepare for exams – researching, studying, memorizing – it gave me such anxiety knowing that I would have to retrieve all of that information in a limited amount of time and use it to prove that I knew what I was talking about. So much was riding on it, and I usually doubted how well I would do.

Yesterday, we had a very important IEP meeting for my son who has autism and is now in high school. He requires constant assistance to start, work on, and complete assignments at the public school where he is mainstreamed with extensive support. While we are very fortunate to have that support, I do not want his potential limited by a modified diploma. He needs to be taught to work independently, and I don’t see how that could happen in his current placement. We found a school that specializes in teaching ASD students, and he has attended summer camp programs there. I asked his current school to change his IEP to reflect that his academic needs would be better met in the special program.   

I prepared for this meeting for two weeks. I researched online, I consulted other special-needs parents, and I printed out e-mails from my son’s special education teacher that I had saved over the course of the school year, mentioning various times that she’d had trouble getting him to do the work, and in which she was asking me for advice. I built a case showing that although I appreciate the support that my son receives, his academic needs were clearly not being met. I practiced my main arguments in my head for days. I threw all of my energy – mental, emotional, and physical – into my preparation. I meditated. I prayed. I tried not to lose sleep. I did everything I could.

But this was one exam that I could not pass. From the moment I sat down at that huge, intimidating table, the district special education coordinator controlled the meeting. She knew how it was going to go. She was diplomatic and acted sincere, but she did her job for the school district. No matter how convincing my arguments, no matter how irrefutable my evidence, no matter how much I stuck to the facts and did not let my emotions surface, she did not waver. It didn’t matter what I’d said or how many e-mails I produced. I felt railroaded. We never had a chance.

I left the building and the tears immediately streamed down my face. I couldn’t even make it out to my car first. I was not completely surprised at the outcome of the meeting, but still, I had hoped. And it was quite a blow. I know that I could hire a special education attorney and take the district to court. I know that we have a good case. But I also know that there’s only so much I can take. I’m supposedly so “strong;” I’ve been told that many times over the years. But I’m not. I’m tired. I’m vulnerable. And I’m not going to fight that fight.

But I will continue to work for what’s best for my son, even if it turns out to be something different than what I’d thought would be best. When I tell Nigel, after I’d come home, that the district would not approve transferring him to the special school that he wanted to attend, at first he’s angry. “We need to call the authorities!” he proclaims. But after a few minutes, after he feels my calmness and acceptance, and after we talk about our alternatives, he sighs and goes back to the cartoon he had been watching. I walk out to the kitchen to begin making dinner.

I think about the huge changes that my son – that all of us – will be facing very soon as we move seven hundred miles away to be near the special school in Los Angeles. His father lives there, and my two sons have spent the past eight summers there. They’ll go to the local public school, and we’ll just keep working to get Nigel in the one we want him to attend. But I’m open to the possibility that maybe something else will come up in L.A., some other opportunity that will turn out to be even better for him. Something we hadn’t even thought of. After the meeting, walking out to the car, I felt so disappointed in myself because I knew that I wasn’t going to fight the school district. I felt like I was surrendering, giving up. But now I see it differently. It’s not surrender; it’s hope. Hope for something better.

A few minutes later, as if he picked up on my thoughts, Nigel walks through the doorway of the kitchen, stands there for a moment, and says, “Maybe some good will come of it.” It was most likely a line from a movie. But it couldn’t have been better said. I put my arm around his waist and pat his back and tell him Yes, honey. I’m sure of it.

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 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.

Looking Not-So-Far Ahead

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 –

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.

An Open Letter to My Son’s Teacher

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

Needs

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!