Category Archives: Future

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.

*

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.

*

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.

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.

Questions

The Scene:  Interior of suburban family home. A mother, exhausted from just another regular day, collapses on the couch in her living room. She has just completed her responsibilities for the evening, taken a shower, and dried her hair. Alone, looking forward to some time to herself, she takes a deep breath and picks up a book that she hadn’t been able to get back to for several days. A minute later, one of her teenage sons opens the door of his room and walks down the hallway. He stands at the entrance of the living room, waiting for his mother’s attention. She turns her head to look at him, thinking that he’s going to announce some historical or scientific fact that he has just discovered. Or that he’s going to remind her once again about the Goonies 25th Anniversary Event that he wants to attend the following month, in a city four hundred miles away. Or that he’s going to announce that he has to go to the bathroom.  His tone is serious as he begins talking.

Teen son:  My path is not out here [gestures to indicate the area in front of him], but in here [lays his fist over his chest and pauses before continuing.] Even if I find answers at that school in L.A., I will still have questions.

Nothing I Wouldn’t Do

When Nigel was diagnosed with autism in 1997, his father and I immediately enrolled him in an ABA-based program that we were fortunate enough to have access to all those years ago. We hadn’t even heard of ABA. But we were steered in that direction by the therapists, teachers, and autism consultants who had identified him, and we went with it. We were surprised to learn of the intensive nature of the program – thirty hours a week with two weekly home visits. At that time we were living at poverty level, so the state paid the staggering costs of the therapy our nonverbal son so desperately needed, and we were grateful.

But had we been faced with footing the bill ourselves, we would have moved heaven and earth to do so. As it was, I went back to work shortly after the diagnosis. My then-husband worked evenings and weekends while I worked weekdays. Even with our nearly opposite work schedules, we still had some crossover time when we both needed to be at work. Nigel could not be put in daycare due to the severity of his autism at the time. We tried a few places and were turned down. There was also Aidan, who was eighteen months old then. My father had recently retired and offered to babysit a few afternoons a week to fill in the gaps, and I am forever grateful for that. My boss allowed me to leave work early when needed, and I am equally grateful to her. We made a lot of sacrifices and relied on the assistance and understanding of those close to us to get through those early years.

At some point, we noticed with dread that Aidan had strong sensory issues and a delay in language development and enrolled him in a therapy program similar to Nigel’s, minus the ABA component. Having two special-needs children with all of their therapies, doctor appointments, teacher and specialist meetings, and juggling work and, ultimately, single parenting was painful, especially when their father moved 700 miles away. But I did what I had to.  And I would do it all again. There is nothing I wouldn’t do for my boys.

And I still do. When Nigel was terribly bullied at his middle school two years ago and the administration would not, as I requested, talk to the student body about developmental disabilities, I pulled him out and made sacrifices to be able to homeschool him. When Aidan developed an unknown health issue last year, we racked up innumerable hours scheduling and attending all of the various medical tests he endured and then the surgery, once his condition was identified. But that’s what you do. You do whatever your kids need. And it has become painfully obvious that my boys, now teens, need two things: more time with their father and specialized instruction for Nigel.

Nothing I wouldn’t do.

So I take a deep breath as I write this, as I commit the concept to print: We are moving to Los Angeles. Not next week or next month, but soon. In mid-June, for the past eight years, the boys have gone to visit their father for several weeks. This June, they’ll move. I’m putting my house on the market in about three weeks, and I will join them in L.A. as soon as it sells.

It’s a huge change for all of us, but one that I believe will yield many positive results. Nigel will attend a specialized school for autistic students that will target his lack of executive function. And with his recent announcement of wanting to go to film school for college, we’ll be in the right area for that to happen down the road. Aidan, who has had the hardest time living far from his father, will be near him year-round. And I plan to finally find a job that fits a little better with my English degree, as well as spend time with other family members whom I have missed for many years (I was born in L.A. and moved to Oregon for college).

But I can’t begin to describe how much I’ll miss beautiful Oregon and our family members and friends who live here. I have no doubts that this move is the right thing to do, and that this is the right time, but I have spent half of my life in Oregon, and there is much to be missed. It’s not called “God’s Country” for nothing! Then again, the other half of my life has been spent in the “City of Angels,” and, truth be told, my feelings aren’t too mixed about returning to it. But for now, I’ve got a yard to spruce up and lots of paperwork to fill out.

It’s time.

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.

A Normal Man

Sometimes, as a mom blogger, I get the feeling that my kids somehow tap into the wavelength of a post I’ve written – before I even post it. And then they come to me and totally disprove whatever I’ve written about them.

For instance, the night that I wrote “Polite Conversation,” about Nigel using lengthy delayed echolalia at the dinner table one evening, he came into my office – minutes before I posted it – and began what was undoubtedly the most incredible conversation I’ve ever had with him.  I honestly didn’t realize that he was capable of a serious back-and-forth discussion regarding intangible ideas for over half an hour. And he revealed so much more about himself during the course of it.

He started off by running into my office, eyes wide. “Mom! Have you heard of something called ‘home births’? Because I think I want to have my children that way and I wanted to see what you thought of it.”

Definitely didn’t see that coming. “Yes, I’ve heard of them. But I think that you should talk to your wife about it first. And I don’t think you need to worry about that for a long time.”

“You mean when I’m 18?”

(!) “No, I think that’s a bit early. You need to have a good job and a home for your family before you start thinking about having children.”

“20?”

“I think that’s a bit early also.”

“Well, I need to be prepared.” That’s six years of Scouting talking.

Then he sat down on a chair that’s across from my desk, and the topic changed to dating. He mentioned, quite wisely, that he needed to have a girlfriend before he could have a wife, and that there didn’t seem to be any girls at the high school who really understood him. He said that some of them were nice to him, but he was worried that they might not be sincere. “What if they ask me out on a date, but they’re just trying to trick me? How will I know the difference?”

My heart ached to hear him say it. He already knows that he is vulnerable to this. I told him that one thing that will help is to be friends with a girl before dating. And then, I pulled out my new copy of The Unwritten Rules of Social Relationships: Decoding Social Mysteries Through the Unique Perspectives of Autism by Temple Grandin and Sean Barron. It had just arrived from Amazon mere days before, and I had been waiting for the perfect opportunity to tell Nigel about it. I couldn’t have planned this better if I tried.

He seemed interested. I asked him if he wanted to read it himself or if he wanted us to read it together, and he opted to read it on his own. I was thrilled by his positive response! Somehow I had tapped into what he needed – before he even asked. But of course, we autism parents do that all the time, especially when our kids can’t ask.  

We talked some more. We conversed. He made eye contact, he posed ideas and waited for my response, and then he responded to my ideas. Sometimes he added even more to his response. His voice inflection was perfectly appropriate, he tried new words and asked me if he used them correctly, he was fully engaged. My heart was bursting with joy, because for many years I didn’t know if such conversations could ever take place.

Then at one point he leaned forward in his chair and said, “I think I’m different from other autistics because I want to be a normal man and have a wife and family.”

I tried not to let my face show too much emotion, but lately my son has been causing me to tear up a lot. “Oh, honey. Yes, your autism makes you different and makes some things more difficult to achieve, but don’t ever think that you can’t be a normal man if you don’t have a wife and family. Whatever you do with your life, you will always be a normal man. In fact, better than normal.” I got up, walked over to him, and gave him a hug, which he stiffly accepted (the usual for him).  

He left then, book in hand, and I couldn’t help but cry. I always think about my son’s future and how different things will be for him. But what I hadn’t thought about is the now unmistakable fact that he is also thinking about his future, his adulthood. And then I remembered something that I had forgotten to tell him. Something I wanted to make sure he knew. I dried my eyes and walked to his room.

“Nigel, I just wanted to tell you that when you’re an adult, I’ll still be here to help you, to talk with you. I’ll always be there for you.”

He paused a moment, taking that in. Then he said, “Good, because I don’t know how to get grants for college.”

Oh, honey. I got you covered.                                                                                

The Talk

     *

Usually when parents think of “the talk,” we think of how to approach that first time that we tell our kids about sex – and all the other ensuing (hopefully much later) talks on the subject. Or the talk about drugs and alcohol. The talk about the importance of not stealing even if something “only” costs 25 cents. So many talks we parents have with our kids.

Add to that all the other difficult talks we have to have with our special needs kids. The talk about what autism is, and that he has it, or telling his brother about it. The talk about how sometimes kids are not really your friends if they try to get you to do something. Or if they say that you’re “entertaining.”  And then, when the child with whom I’d wondered if I’d ever have a conversation more involved than “Would you like a sandwich or eggs for dinner?” progresses to the point that he tells me when he’s turning 15 that he would like to get his driver’s permit, I realize that I have to have yet another difficult “talk.” Because as far as he’s come, as glad as I am that when he was six or seven he could actually respond that he wanted eggs for dinner, he’s not ready to drive. No way. And it’s not because I’m not ready to let him drive. It’s because he’s still far too distractible, impatient about traffic (in a scary way), and lacking judgment. Sure, many teens are that way. But with him it’s exponential. And letting him drive now would not be good judgment on my part. In fact, it would be insanely irresponsible.

But he really wants to drive and actually started talking about it when he was twelve. So this talk has been looming in the back of my mind for three years. And I’ve got to let him down gently. I’ve got to figure out a way to tell him that there’s yet another thing that his autism is going to affect, right when he’s gotten to a point where he’s started to accept it.

So I decide to do it during a time when he’s relaxed but somewhat engaged in an activity that he enjoys. And when it’s just the two of us carving pumpkins on a Saturday afternoon (since Aidan can’t handle the smell and doesn’t participate), I take a deep breath and dive in. I dance around the subject by casually mentioning some of the positive ways in which autism affects him  (learning to read early, being good with maps and remembering facts), and then I mention some of the difficult aspects (delay with learning to talk, his sensitive hearing, regulating behavior, etc.). I forge ahead and say that some people with autism need to wait a few years before they’re ready to start driving (as well as some who don’t have autism).

“But I don’t think I need to wait,” he says, his voice calm but purposeful as he carefully saws off the top of his pumpkin. “I think I’m ready for my permit.”

I gently remind him of how impatient he gets with traffic and that his response indicates that he needs to work on that before he can start learning to drive. I tell him that being good with machines and having the ability to operate the vehicle (his argument of readiness) is not the most important element of driving. That he needs responsibility, awareness, and judgment to safely drive a car.

He is still eerily calm. Is he actually understanding? I wonder, I hope. He quietly scoops out pumpkin seeds, seeming to take all of this in, although I can feel his disappointment. Then he stops briefly and asks, “When?”

Gulp. I should have expected that question to be part of the equation. No stranger to being put on the spot, I remember Mama Edge’s comment and quickly come up with a plan. I tell him that he needs to demonstrate three things to me whenever we’re in the car – patience with traffic, focus on (my) driving and not being distracted, and awareness of other vehicles, drivers, and pedestrians. I tell him that if he does all of those things in the next year, then when he’s sixteen we’ll discuss enrolling him in a driving class. I’m not convinced that he’ll be ready in a year. But I can’t dash his hopes.

“Does that sound good to you?” I ask. “Are you okay with that?”

“Yes. I’m okay with that,” he says in his usual flat voice. He won’t make eye contact, but he is calm, accepting. I praise him for his maturity, tell him that this is the first step in demonstrating patience and responsibility. For years now, he’s been aware of the limitations due to his autism, but he’s learned to accept it and work with it. He may not be ready to drive in a year, but someday, he will. Autism will often delay him, as it did with talking and so many other things, but it won’t stop him. This I know.

* Nigel’s is the happy one on the left

The Funk

Silver Falls State Park, OR

When I was in college, my roommates and I hosted a P-Funk party that people still talk about. We dressed up and wore wigs. We played records (yes, records) and really got down. But that’s not the kind of funk I’m into now. A few months ago, my two teen boys invited some friends over (more teen boys) for a sleepover, and the next morning, as they slept and I walked into the game room to survey the damage (almost as wild as my P-Funk party), I was hit with a wall of funk. Teenage-boy funk. Sweat, dirty socks, and (um, how to put this delicately?) expelled-air kind of funk.

But that’s not the kind of funk I’m in now. You know the kind, I’m sure – things are going mostly okay, you’re working, taking care of the kids and the household, but something doesn’t feel right. And in spite of all that’s good in your life, in spite of counting your blessings, it’s still hard. Right – nobody said life was supposed to be easy. But is it supposed to be hard?

No, I tell myself. I’m just in a funk. I’m at a crossroads with my finished-but-still-unpublished book, unfulfilled with my day job, feeling like I’m between treading water and sometimes barely keeping my head above it. So when Nigel, who turns 15 next week, told me last night that his case manager at school said to ask me if he’s going to be getting his driver’s permit (what?!), I felt like I’d been hit by a wall of water.

I didn’t know this was coming, although really, I did. I just didn’t know it would be this week. But what shocks me more is that I was just talking about this with my good friend Carrie less than a week ago. (Got Carrie? If not, head on over there immediately. You’ll be glad you did.) I was telling her how I didn’t know how to tell my son that he’s not ready to drive yet, in spite of how much he wants to. I told her how I’ve been putting it off, not sure how to approach it, foolishly thinking I still had some time. And then, something amazing happened, as it usually does when we’re with someone who listens and understands. Out of my mouth tumbled, “Maybe he just needs to hear it from me” or something along those lines. And I knew that I had to have the talk with him soon. I just didn’t get it together quick enough. So, I copped out. Last night, as I had three different dinners cooking at once while he stood there expectantly, I said, “Maybe in a few months.” I just couldn’t do it right then.

Because last night my other son needed me more. Last night Aidan was still recuperating from a vaccine reaction. Yes, I said it. I’m going there. He had his 13-year physical two days ago (a couple months late, but oh well), and the nurse spouted off at least four different vaccinations or boosters that he “needed.” We decided to go with one – the meningitis. It was the one that I felt strongest about, so we took it. Then I dropped him back off at school and I went back to work. In less than an hour, Aidan told me later, his arm was numb, and he had a headache and abdominal pains. My poor sweet boy didn’t want to disturb me at work, so he suffered through it at school and told me when he got home. He slept badly that night, still experiencing the same problems. He stayed home from school the next day, and by that evening (last night), he was feeling better (although his arm still felt strange).

I went in Aidan’s room to talk to him before he went to sleep, as I do every night. I’d had an epiphany, and I wanted to share it with him. My younger son has sensory processing disorder – gustatory, olfactory, tactile, proprioceptive, and vestibular (worse than Nigel in all of these areas). And when Aidan was a baby, he cried almost constantly – but it didn’t start until he was two months old. That was when he received his first round of what turned out to be no less than 16 vaccinations by the age of 18 months. (By comparison, I’d received 6 vaccinations by the time I was 18 months. I guess I should consider myself lucky to be alive, as undervaccinated as I was.)  Aidan knows that he was a crier. He’s heard the war stories. But, as I told him last night, now we know why. I think that it took months for his little body to assimilate the vaccines, and by the time he got through one round, it was time for another, and then another. His body was flooded, overwhelmed. And I believe that experience contributed to his sensory processing disorder.

Maybe I’m reaching. Maybe it’s my funk. I don’t think vaccines are bad. But once I made that connection with Aidan’s babyhood, I felt like I’d solved a 13-year mystery. And Aidan agreed with me; both of us achieved some closure. As I left his room, I blew him kisses from the doorway, as I do every night. Often he blows them back to me. Last night, I shut the door and stood in the hallway a moment. I heard him continue to blow kisses to me even after the door was shut.

I can only hope that when I approach Nigel about the driving issue that I can word it in such a way that he can understand.  I don’t want him to see it as a punishment, as a wall of water crashing down on him. I hope that what I discussed with Carrie turns out to be right – that he just needs me to tell him. Maybe once I talk with him and get it all out on the table, I’ll feel better. Free, even. Free of the funk.  

It’s Time

This is the week for me. The mad-dash week before school starts. All parents know how it is with registration, getting school supplies, checking schedules, that kind of thing. And all special needs parents know how it is with the added emails, calls, meetings, walk-throughs, etc. that are necessary in getting our children set up with the support systems they need to be successful. In a transition year – either starting at a new school or at a new level of school – those efforts are doubled.

This year Nigel starts high school, so he’s at a new level and a new school.  With all the stress I’ve been experiencing lately, I feel like sitting in a corner and rocking, stimming my stress away. So far it’s gone smoothly getting things set up for him, but there is so much time, effort, and energy (mental, emotional, and physical) involved that I feel like I am nearing a breakdown. I so want this to work for him. I want him to be comfortable and confident. I want his needs to be met. I want him to be accepted and appreciated. I want him to focus and learn and also have fun. I don’t want to worry about getting calls at work about behavioral issues because someone has purposefully pushed his buttons. I don’t want to worry about what our options are if this doesn’t work. Please, please, please God, let this work. Let him be happy.

We went to registration today, and then met Nigel’s new case manager. How must this woman feel? I’m sure she’s aware of the fact that we special needs parents place so much hope in her. I know she’s aware of that. In fact, she must have picked up on my desperate vibe, because at one point she said to Nigel, “I’m your school mom.” No one has ever said that before. And I wanted to cry and hug her and thank her because she obviously gets it. She knows how important her role is. I sometimes wonder if these professionals who work so tirelessly with our children, who are devoted to their success and well-being, feel the strain that we parents feel at the beginning of the school year. This combination of hope and anxiety. I should come up with a name for it. After all, it’s not just at the beginning of the school year that I feel it.

Anyway, when she said, “I’m your school mom,” Nigel gave a small, cute smile, like he thought the idea of a “school mom” was silly. But I sensed that it comforted him, and he understood her meaning. In that brief meeting, she really listened to him. I could tell that he felt respected, and comfortable. The regional autism consultant, who has known him since his nonverbal days, was also at the meeting, talking about his strengths and making recommendations. His speech therapist from the past three years was there, and we found out that she would continue to work with him and facilitate the social skills class that he will take. I feel very optimistic, even though the anxiety is hovering in the back of my mind.

However, the bottom line, the “take-away,” is that Nigel didn’t just attend this meeting. He participated. He was slow to answer at times, rarely made eye contact, and was frequently off-topic with his requests and comments, but he was an integral person. And he even remembered to cover his mouth when he yawned, which shocked me after all these years of telling him it’s the polite thing to do. I swear I think it was the first time he ever did it on his own.

But at this meeting he accomplished things that were so much more important than being polite. He spoke up and discussed his needs. He told us which subjects he needed to take at the lower level, and which he didn’t. He mentioned his experience with bullying. He advocated for himself. And I am sitting here in tears as I write this, because the boy who, at the age of five, could not tell a doctor his own name is now advocating for himself. He really is. And I sense that this is only the beginning. It’s like he’s trying to tell me, Mom, I got this. I know it’s not time for me to step back yet. No, there is still much more work for me to do.  But it’s time for me to let him step up. He’s part of the team. Yes, he is.