Category Archives: Autism

The Journey: Our Neurological Perfect Storm

On average:

These are not good odds. But in neurobehavioral research, it’s the perfect storm.


At the age of eight I discovered my father’s Encyclopaedia Britannica, a 30-volume set, and read each one. I learned about anatomy and geography and developed a love of history. I also became fascinated by autism. I read about epilepsy. Various mental illnesses intrigued me, especially schizophrenia and bipolar (then called manic depression). I started writing a story about an autistic girl who communicated via echolalia. I wrote another story about a pregnant girl who had schizophrenia. As I got older I began reading other books about autism (that I could find – not too many back then).

It was as if I somehow knew that I would find myself the captain of a boat in a perfect storm, trying to get over the next monumental swell. My son’s autism. His development of epilepsy. My diagnosis of bipolar. Then his. One neurobehavioral wave after another.

When I stop and think about it, I really wonder how he gets through his day, how he does as well as he does. As I know from experience, bipolar on its own can be horrible enough. Add a healthy dose of autism and some grand mals and you have the makings of I-think-I’ll-just-stay-in-bed-the-rest-of-my-life.

It isn’t pretty; it isn’t poetic. There isn’t some beautiful, poignant way I can write about it. Did I know? Was my eight-year-old self subconsciously trying to prepare me for my future? Was God, or fate? (“Oh, so you’re interested in this stuff? Really want to know what it’s like? That could be arranged.”)

The sea has calmed a bit since we finally found the perfect pharmaceutical storm. I don’t even want to think about where we would be without anticonvulsants and mood stabilizers. Back in the days when autism and bipolar didn’t even have names, we would be in asylums. We would be those people you see in old black and white photographs, chained to beds or – God forbid – cement cells. We would be wailing, rocking, wishing for death. How could I know that? Because before medication, that’s what I was doing. Just not in an asylum.


There are worse things than that trio of statistics. There are those even now who don’t have access to the medication that would alleviate their pain, and those who have tried many medications and still have not found relief. There are many storms besides our own, many boats at the mercy of nature. It is for them that I share my journey, and with it the hope that in some small way, it helps.

*image courtesy of Discover Magazine

The Journey: ABA and How I Feel about It Now

[This post is the first in a series about looking back on aspects of my journey as an autism parent and how I feel about it now that my son is 20 years old.]

One thing you’ll find with most parents of children who have autism is that they always remember D-Day. The day of their child’s diagnosis. The day everything changed.

Some parents are devastated; they grieve for the future they envisioned for their child, for the parenting experience they expected to have. How could this happen to me? To us? This is so wrong!

Some parents are filled with shock and fear – what does this mean? What are they supposed to do? What’s the next step? What does this mean for their child’s future? They feel a sense of dread and despair for the journey ahead of them.

Some are angry. Who does this doctor think she is? She doesn’t know my child. My child shows affection! He laughs! How dare this doctor say he has autism? I know my child better than any professional could.

Some, surprisingly, feel relief. They knew something was different about their child. They knew their child should have been talking by now. They knew he wasn’t just a “late bloomer.” They knew their child wouldn’t be shrieking at any outing in the community unless there was something going on with him.

And, of course, many parents feel a combination of these reactions and emotions. Me? I felt strangely relieved, but also shocked and fearful of the future. In 1997, the year of our D-Day, autism was still considered by some in the medical field to be the death sentence of developmental disabilities. There wasn’t much information out there. No internet, few books. Somehow I found out about ABA and learned that there was a local center that offered ABA-based therapy, without the use of aversives. At that time there were only four children in the program, and my son became one of them.

From the age of 3 to 6 years, he received approximately 25 hours a week of therapy, including two home visits every week. He was taught to communicate using PECS – Picture Exchange Communication System – with cue cards and schedules. He also received speech and occupational therapy. When he responded to the behavior therapy by following instructions and interacting with the therapist, he received a gummy bear or some other type of treat. And after over two years of this intensive therapy, he began stringing together three words of spontaneous speech. He was five and a half, and I had some hope.

Over the course of many years, he progressed more than I had ever dared to dream. I felt certain it was because of the early intervention therapy he had received. I recommended ABA-based therapy to other parents I met. I believed that it saved my son. He wasn’t cured, and I never expected that, or even hoped for it. But I had wanted him to be able to interact with us and navigate this world as comfortably as he could.

At some point, probably when I participated in the Partners in Policymaking program last year, I became aware of the concept that maybe he would have been okay on his own, without therapy. Maybe he hadn’t needed to lose 25 hours a week of his childhood and been made to feel like there was something wrong with him. Maybe he would have learned to speak on his own timeline, might have naturally developed a way to filter all the sensory input that agonized him. Maybe with time he would have been fine on his own, and he could have just been allowed to be a little kid, unfettered by sitting in a chair across from a therapist five days a week. Maybe he could have had a “normal” childhood.

And I started to feel bad about the therapy I had so exuberantly lauded. I started to think that my son, with all the gummy bears and goldfish crackers he was rewarded with, had been trained like a seal. Or a lab rat. How could I have thought that was how to teach him? How could I have thought that was beneficial for him?

Either way, there’s no way of knowing if it was the therapy or if it was just the passing of time. And instead of beating myself up over something I will never know, I have come to accept the belief that it was both. It was the therapy and it was the passing of time. But it was also my son’s determination, my belief and hope, our connection, and our love. It was not one thing; it was everything.

[Image courtesy of Keep Calm Studio]

Transition Check-In: Something Between Us


There’s a ride at Disneyland that most of us have probably been on – The Haunted Mansion. I loved it from beginning to end, even though the first few times I went on it I was scared (but, you know, in a fun way). I always loved the end of the ride when the projector ghost would show up in your carriage. “Beware of hitch-hiking ghosts!” the narrator would say. My siblings and friends (and later, my sons) and I would sit as far apart as we could to make room for the ghost. We’d lean into him or pat his head.

So, metaphorically, I like to think that we should always leave room for something between us (besides ghosts). Like fun memories. Shared dreams. Phone calls and texts. A strong connection. And love.


I was 19 years old when I decided to move into my own apartment. I had a roommate, one of my coworkers at the restaurant where I waited tables, and we split the bills. I was also taking a full load of college classes. My parents did not exhibit much confidence in me when I moved out, and I’m sure they breathed a sigh of relief when a few months went by and I hadn’t asked them for any money, when it became apparent that I was swimming and not sinking.

Now, 24 years later, it has been six weeks since Nigel moved into a supported living apartment, and I am just beginning to exhale. Last year at this same time, he moved into a supported living home, a euphemism for group home, and within the first two weeks it was obvious that the move had been a huge mistake, that it was entirely the wrong placement for him for a multitude of reasons. He was back home within two months.

So when plans were being made for Nigel to move into the apartment, there was certainly some amount of concern on everyone’s part. His ever-expanding vocabulary belies him, as his emotional age has plateaued at around age 11 or 12, and he requires assistance.  He receives daily support from a local organization called Living Opportunities. They pick him up and take him grocery shopping with his food stamps, they take him to doctor appointments, help him do laundry, and remind him about hygiene and taking his meds. I pay all of his bills out of his Social Security money, for which I am the representative payee. He receives “walking around” money in cash every week, and in a couple of months, we may progress to a debit card. He rides his bike to and from his GED class at Goodwill a few times a week and is doing well with that. Once a week I go to his place to make dinner with him or take him to a restaurant, and on Saturdays he comes to the house to spend the night with his family.

Two weeks ago I discovered that he had used up a month’s worth of food stamps in two weeks. His support staff only take him to the grocery store and help him through the process, but they do not tell him what or how much to buy. It pained me to see the bottles of an 8-pack of red Gatorade strewn around the living room, along with the empty red Jell-O cups, Chips Ahoy! bags, popsicle wrappers, and yes, a box of Twinkies. God only knows what he bought and consumed that I didn’t see.

So after some by-no-means-gentle admonishments, I was relieved when I discovered that he still had some of the decent food that he had bought with me on his first grocery trip. He had plenty of bread and butter for toast. He had cereal and milk, eggs, carrots and apples. So I told him that he had to use his weekly cash amount to buy healthy food for dinner instead of craft supplies, Lego, parts of his Halloween costume that he has been planning for four months, and Slurpees.

He seemed to understand. The situation was not dire, and I was not going to bail him out. We are now six days away from his next food stamp payment, and he’s going to make it. Last week when I went to his place for our weekly visit, I asked him how he felt things were going being in his own place, and in his wonderful, inflection-less voice he said, “Well…I’m learning a lot.”


Nigel and I don’t talk every day (per his request), but we do text. And I find that when I go to see him, there is this unspoken understanding between us. He is calmer, content with his autonomy. I am calmer, reclaiming mine for the first time in almost twenty years. There is of course the parent-child connection that will always be there. But there is something else between us. There’s a sense of joint validation that we have come through something together. And while we have a great deal more on this road ahead of us, and at the same time are obviously taking steps in our own directions, that shared experience keeps us connected as we move forward.

I’m sure there will be more debacles similar to the food stamp crisis, more stumbles as he forges his own path. More learning to do. But he will be all right, Twinkies and all.


Transition Check-In: The Keys to Supported Independence

If I had written this post just one week ago, it would have been titled “Transition Check-In: The Waiting Game,” because that’s where we were, where we have been, where we thought we would be for at least year two years, waiting for Nigel’s HUD to go into effect. I thought we would have to wait for that to happen before we could set him up in his own apartment with support from Living Opportunities, a local nonprofit organization that helps adults with developmental disabilities to live their lives as independently as possible, while offering assistance in any form that is needed. They have already begun to provide services for Nigel while he is still living in my home, taking him to appointments, helping him to organize his living space and his time. They are very professional and specially trained to handle various needs, personalities, and preferences. They focus on presuming competence and facilitating independence. In fact, they even provide services for a few people who do not communicate with speech, but with supports in place are able to be in their own apartments. Without this support they would undoubtedly be placed in group homes, sharing a small room with another adult. It’s amazing and wonderful what Living Opportunities does. We are so blessed to have this organization in our area.

Last summer, when I moved Nigel back from the group home, I was advised to apply and get him on the waiting list for HUD, which I did. I didn’t realize that in doing so, he would also be on the waiting list for several apartment complexes in our area that offer certain units for low-income tenants who are waiting for their HUD approval. A couple of weeks ago, I received a letter in the mail that one of these units was available.

I called the Housing Authority office to let them know that we were interested, and they said that they had sent that letter out to about 20 people. With Nigel, I drove by the place anyway, just to see what the complex looked like. It was new, quiet, and definitely not Crackville. Nigel agreed that it looked like a nice place to live. Unfortunately I had a very busy week and was only able to call about the apartment the day before the end date for applications, so I figured the apartment would go to someone else, and we would wait for another one of these apartments to become available.

But a week later, the Housing Authority office called me. They said that Nigel was next in line. I asked if that meant there was one person ahead of him and they said, No, he’s it. He’s the next one eligible to apply if he still wants to. And the very next day we went down to that office and filled out the application with me as the co-signer.

Four days later, they called and said the apartment was his! We are going in next Monday to sign the lease and get the keys, the keys to Nigel’s autonomy that he needs and so rightly deserves. The keys to the space for his massive Lego collection, the privacy to act out (in costume) scenes from his favorite movies, and the satisfaction of not having his mother telling him when to shower or take his meds (the support providers will do that when they check in on him every day). (!!!!) And these same keys are also the keys to my relief, to being able to focus on Aidan’s last year of high school next year, and to regaining my sense of self that has been shelved for so long I don’t even know what that self was. These are the keys to rediscovering her.

It’s another big step, probably the biggest, in Nigel’s journey to and through adulthood, a journey to which I have devoted much time and energy. He will have all the support he needs through Living Opportunities, he will spend time with family members at least twice a week, and I am always a text or call away.

Moving Day is in three weeks, when the rubber really does meet the road. It’s the start of something that I would have thought impossible just a few short years ago. But if I look at his trajectory, the journey we’ve been on to get here, every challenge he’s faced or taken on, I shouldn’t be surprised. This is the boy who, at the age of five, could not say his name when a doctor asked. This is the boy who could not go into stores, movie theaters, and restaurants because his sensory issues overwhelmed him. This is the teen who needed a modified diploma because, although he understood the material, he could not handle the volume of work.

But he made it through high school, and he walked across the stage to receive that diploma while his classmates cheered. He was voted “Most Likely to Survive a Zombie Apocalypse” by his senior class. He spent time getting to know a girl and he asked her to prom and she said yes.

When he said, two weeks ago, I don’t think I’m ready for this, I told him, “You can do this, Nigel.” And with the supports in place, I know he will.


Image courtesy of Wikipedia

Hope: Is It in You?

In the past week, I have met with a Vocational Rehab counselor, written a visual support social story about going to doctor appointments, created multiple visual support schedules, and contacted an agency that provides long-term in-home support for people who need assistance meeting their needs. Last week, I left work and picked up my 19-year-old son and took him to sign paperwork for his case manager – twice, because the first agency that was supposed to provide the in-home support fell through, so my son had to come in and sign another release authorization so that his Functional Assessment could be sent to the new agency. His previous case manager asked if we could go to her office to sign some other freaking paperwork. She offered to mail it and I said Yes, please. Next week, I go to our state capital for a six-month course I’m taking called Partners in Policymaking (more about that here). It’s a four-hour drive one way, and I do this every month, so that I can learn how to help my son have the most fulfilling adulthood possible.

This is some of what you do when you have a child with a disability and he or she is transitioning to adulthood. Other parents have to change their adult child’s briefs, or feed them by hand, brush their teeth, help them bathe, or carry them up the stairs. Others look at residential homes for their child, as I did last year. And when they’ve been there for two months and the caregiver calls you and says, “He’s not functioning here,” you have to move him again, back home, and then the process starts all over as you try to find something else.

I go out in the community and see my son’s previous classmates. They are also 19 years old and working their way through college. Some of them live at home still. But they register for classes themselves and take themselves to dental appointments and don’t have Functional Assessments and their parents don’t have to constantly leave work and pick them up and drive them to various agencies to sign release forms. If they have to sign anything they go and do it themselves.

I have been doing this – parenting a child who has had years of therapy appointments, IEP meetings, behavioral challenges, and other issues too numerous to list – by myself for 15 years. And it’s not over yet. It may never be over. I don’t think there is a word to describe how I feel. Exhausted doesn’t begin to cover it. Drained is part of it, but there’s more to it than that. And I have another child, so I know that when there’s no disability involved, you still have to do all the regular things that parents do for their kids, but it’s so much easier. Believe me, it is.

I’m guessing there are other parents out there who feel as I do. And I don’t like to write about it because the last thing I would want is for my son to feel that he’s been a burden to me. He has taught me many things, and I am a better person for it. It may not sound like it, but I’m very grateful. In fact, it’s not so much him and helping him to meet his needs as it is doing it by myself. If being a parent is “the toughest job you’ll ever love,” what is being a single parent? What do you call it when you’re still doing it and your child is an adult?

I realize that I’m not sounding very gracious, like I’m feeling sorry for myself. Maybe I’m venting. But something’s got to give. When you don’t see a light at the end of the tunnel because the tunnel never ends, how do you keep going? I meditate (when I can fit it in), I pray, I have a mantra that I say to myself throughout the day, I go to support group meetings, but I feel like I have nothing left, like this rodeo has kicked my sorry ass, and I have to keep getting up and getting back on that horse, over and over again.

And somehow I do. I push through it and keep going, with a little venting, a lot of patience, and the hope that I’ve got it in me to continue.


Image courtesy of www.

Transition Check-In: Limited Means

IMG_0031“I don’t like it when you say ‘special needs’ or ‘developmental disabilities’ about me.”

“I’m sorry, I didn’t realize that.”

“It makes me feel like I’m incapable of doing things.”

“I’ll do my best not to use that terminology with you. What do you prefer that I say instead?”

After a moment of thought: “Say that I’m a person of limited means.”


As I write this, I am on day two of a pretty bad migraine. The boys and I have just finished getting over illnesses and dry throats due to two and a half weeks of the central heating system in our new apartment not working properly. The fan blew recycled air out of every vent in every room 24/7 for two and a half weeks. The technician had to make three trips here before it finally shut off, which was yesterday. My computer was not connecting to the internet for almost a week, which is bad because I do a lot of work online from home, and after spending an hour and a half on the phone with Dell’s tech support in India, it crashed completely and I couldn’t even work offline. Over three more hours and two more calls-to-India later, it was fixed. Apparently this occurred during the peak of Mercury in retrograde.

So yes, the next step in Nigel’s transition to adulthood: we have moved into a 3-bedroom apartment, and everyone is pretty excited to have more space. I am happy that all of Nigel’s stuff is confined to his new bedroom. Aidan is happy not to have Nigel’s captain’s bed sitting in the middle of his room. And I’m sure Nigel is particularly happy that no one is constantly tripping over him or his things. (As an aside, I’m also glad that the light never goes out in the middle of my shower anymore.)

Incidentally, three days ago Nigel turned 19. He received a couple of checks for his birthday, and yesterday we went to the bank to deposit them. I have taken him to the bank several times before in the past three years to do this very thing. We walked over to the counter where all the deposit and withdrawal slips are, and I said, “Okay, pretend I’m not here. Just do all the things we’ve practiced before, and ask me if you have any questions.” He stood there, blank look on his face. In a defensive tone he said, “How am I supposed to remember what to do?!” I calmly reminded him that we’d done all of this many times before. “I bet you didn’t have to do this when you were 19!”

I refrained from telling him that when I was 19, I had my own apartment, a car, a checking account, a credit card, paid my own bills, and college tuition. I simply said yes, I did, and walked him through the steps for perhaps the ninth time. And so it goes.

What’s next for Nigel? As soon as I get rid of this migraine, I will be signing him up for Goodwill’s GED program, and he will focus on that for however long it takes. He’s been getting out into the community by riding his bike on an almost daily basis and remembering to text me when he leaves the house and when he returns. We’re at about a 30% rate of him remembering on his own to take his medication twice a day, despite various methods of helping him to do it on his own. But, as in most situations with a person of limited means, one thing at a time.


I told him, gently, that the term “limited means” usually refers to a low financial status (and other things that I know he didn’t have in mind). “Oh,” he said. I assured him that I wanted to be respectful of his preference and suggested “differently abled,” which he vetoed. Finally, in frustration he asked, “Why is it so important to you?” I didn’t have an answer for him, other than what I had already said about being respectful. And, just like that, he had made his preference known.

Transition Check-In: Back to the Diving Board

“Many things in life, at most times, are filled with both uncertainties and possibilities.” – Nigel, age 18

“Life is a holding pattern.” – Tanya, age 98


The phrase “back to the drawing board” supposedly originated from a cartoon featured in the New Yorker in 1941. The cartoon showed various military men and ground crew racing toward a crashed plane, and a designer, with a roll of plans under his arm, walking away saying, “Well, back to the old drawing board.” And as I found myself moving Nigel back to my apartment, with his big captain’s bed and many boxes of belongings (he would be a hoarder if left to his own devices), just two months after his much-prepared-for move-out, I couldn’t help but think of it.

With the situation I described in my last post about Nigel’s transition, things rapidly deteriorated. He had started pulling out his hair and eating it again, and refused to eat meals with the rest of the household, becoming extremely reactive whenever the other client walked into the room and thereby disturbing the entire household, although every effort was made to accommodate him (Nigel). This would occur even when the other client hadn’t said anything or even looked at him. Finally the house manager called me at work one day (he’s not even in school anymore and I still dread, and receive, those calls) and succinctly stated, “Nigel’s not functioning here. He needs to be moved.”

And the curse word that I reserve for situations such as this almost escaped my lips, but in an effort to maintain diplomacy, I said that I would contact his case manager right away. She then proceeded to describe Nigel’s reactive behavior, stating, “It’s obvious he hates the other client.” And diplomacy all but flew out the window as I said, “Whoa! Has Nigel actually used the word ‘hate’?” “Well, no.” “Then let’s not make assumptions about how a person who has difficulty expressing himself thinks or feels!!”

And it dawned on me that no matter how old he is or where he lives, I will always have to fight for him.

His very new (to him) case manager, who has more experience with older adults but is happy and willing to learn as she goes with Nigel, emailed me that she contacted four different agencies, and we had a meeting set up with one of them within days. However, it turns out that these agencies provide services other than housing. They do daily check-ins with those who have apartments, and they provide transportation and job coaching, etc., which will be great in a little while. But until his HUD goes into effect (we are on month two of a four-year waiting list), the only other housing option for him (besides being on a pad on my living room floor, since my younger son moved into the second bedroom two months ago), would be placement in another supported living home.

Why that won’t work:

a)      Several of those homes in our area have babies in them (he can’t handle the crying)

b)      What happened at this last house could easily happen in another home, including his reactive behaviors

c)       If there are no openings in our area, he will be sent anywhere within the state that they have an opening, as far as 300 miles away

d)      He wants to remain in this area, near family and friends, so he can have support while he works on his GED

And something else dawned on me, equally as significant: It’s not about the other client.

I think Nigel realized (and eventually I did too) that he doesn’t belong there. Not just that particular home, but any of them.  He’s not ready for his own apartment yet, but someday – with daily check-ins, transportation, and other services that these disability-related agencies provide – he will be. And until then, I can’t stand by, able-bodied, and let him be miserable. Yes, I’m exhausted after 15 years of single parenting. Yes, I wanted more than anything to spend some one-on-one time, finally, with Aidan before he graduates from high school. Yes, I wanted Nigel to feel like he could be semi-independent.

But the supported living home didn’t work. And I know there might be others that might work for him. Unfortunately with the limited resources in our area, we can’t be choosy. Often there’s only one choice, one opening. If there’s something about it that won’t work for him, the only alternative is to stay in my living room. And of course no one here is enjoying that.

Instead of “back to the drawing board,” for me it’s more like “back to the diving board.” As I fill out applications for 3-bedroom apartments and get the money together for the deposit, bracing myself for another move, I feel like I’m diving into cold water, and I’m dreading it. Things were supposed to go much differently than this. But they didn’t, and now I’m right back in the situation I was trying to change. And as I dive off that board, back into it, I’ll try to keep in mind Nigel’s positive words from over three years ago, when we experienced a similar life-changing decision that didn’t work out in our favor: “Maybe some good will come of it.”

I’m sure it will. We just have to get there.

Transition Check-In: On Chickens and the Counting of Them

Sometimes waiting to count your chickens after they hatch isn’t going to help. Because if they aren’t doing well after they hatch, what do you do then?


The good news is that after seven weeks of Nigel living in a supported living home, I am still confident that he is receiving the best professional care possible, that he is well taken care of. The bad news is that he has a housemate, another client, who drives him insane. This guy, who is not on the autism spectrum, is very talkative and constantly tries to engage Nigel. Explaining that “Nigel needs a lot of time to himself” works for about five minutes until the other guy forgets and comes over to talk to Nigel again. The house managers have tried to help by giving the guy incentives and reminders, and they’ve also incorporated coping strategies for Nigel such as having him wear over-the-ear hearing protection as a signal that he does not want to be disturbed. But it has only resulted in engendering animosity, and things are escalating.

It’s gotten to a point where Nigel is constantly on edge, reminded of when he was in middle school and being bullied, even though this time there is no malicious intent. It doesn’t really matter. He feels badgered, even though the other guy, who is angry and feels rejected, can’t help it. The fact that Nigel can’t make the badgering stop throws him right back to the agitated state he experienced in his early teens. And he’s regressing behaviorally and socially. I have seen him overnight at least every other weekend since he moved, and I can see the difference. He’s rapidly losing ground.

Part of me wants to hold off from swooping in and rescuing him. This was something he wanted to do (“I can’t wait to be out from under your rule” was a common refrain last year), and it’s important for him to learn what he can from the experience. We’ve all had to learn to coexist with people who irritate us – coworkers, roommates, even family members – it’s a fact of life, and a social skill. If he were being bullied, I would instantly make changes. But he’s not. He’s uncomfortable, but he’s okay.

And so I’ve come up with what I hope will be a positive (and swift) solution. We’re looking into alternatives where we can move him. I’m certainly not excited about the process of this, having already gone through it for most of the past ten months. Lots of phone calls, emails, and appointments. Lots of driving over 50 miles to pick up Nigel, drive to where the agency offices are (he’s in a rural area), and then either have him spend the night and/or drive him back to his place, another 50+ mile round trip. It wasn’t supposed to be like this.

I’m sure Nigel is thinking the same thing.


When it comes to chickens, I’ve learned to just not count them at all. Not at any point. Life is eternally wait-and-see, demanding patience and detachment, but, fortunately, buoyed by hope.

Why My Son Moved to a Supported Living Home

IMG_0909It’s not something you hear a parent say every day. It’s not “my daughter has a dental appointment today” or “my son had a meltdown today” or even “I had an IEP meeting this afternoon.” But the words ran over and over through my mind as I drove home: I moved my autistic son to a supported living home today.

Nigel’s 18 now, diagnosed over fifteen years ago, started talking at age five and a half. He has an emotional delay of about five years and the executive function skills of a typical seven-year-old. He has received various therapies since before the age of three and received a modified diploma last month. He likes to read Jules Verne novels and National Geographic magazines. He loves listening to Creedence Clearwater Revival and Bob Marley. He loves watching action/adventure/disaster movies and wants to go to film school and work for Disney.

Yes, he is all of those things and more, the good as well as the challenging. He has epilepsy (the kind with grand mal seizures) and all of the doctor appointments, lifestyle changes, and medication issues that go with it. He also has bipolar and all of the tribulations that go with that. I won’t go into detail about his history of aggressiveness and other behavioral issues. After years of careful observation, intervention, and lengthy, exasperating medication changes, we have successfully resolved most of these issues. Why then, I have been asked, have I still pursued placing him in a supported living home?

In a word, need. After over thirteen years of single parenting a special needs child, I need this. After a lifetime of subsisting on the scraps of my attention and having to watch out for his older brother, my younger son needs this. And after coming to terms with one disorder after another and grasping at whatever semblance of semi-independence there is for him, Nigel needs this. And he wants it. For months we researched supported living homes in our region and found a highly regarded one that he liked that happened to have an opening right when he was ready to move. Right place at the right time.

Still, as I drive back from my son’s new home, forty minutes away, the guilt creeps in. The feeling that I’m not doing what I’m supposed to do as a special needs parent, that he’s supposed to live with me until I die and I’m not honoring that unspoken code. But why should we think that way? Is it pride? Is it duty? Is it love? Is it just…playing the hand we were given?

Yes, it’s probably all of that. But I say if we can trade in one of our cards so that we have another option, we shouldn’t feel regret at doing so. We still have the same hand – we can just do a little more with it now. Fulfill some needs. Maybe things will turn out even better than we’d hoped. And if they don’t, we can make changes. After all, we want the same basic things for all of our children, with or without disability. We want them to be safe and we want them to be happy. And if those things can be achieved outside of our home, there should be no chagrin, no second-guessing ourselves. There should be a sense of accomplishment, as with any other milestone.

This is my child, whom I’ve nurtured and shepherded into adulthood, like any good parent. We’ve experienced some different circumstances along the way. But just because I may no longer be his primary caregiver does not mean that I’m not going to be involved, that I don’t wonder every few minutes how he’s doing, if my trust was well-placed, if he’s safe and happy. No matter how confident I feel about my judgment, there are no guarantees. Some of us are not satisfied with that, but I cannot live in fear, and neither can Nigel. If there’s one thing he’s taught me, it’s to never give up. And I won’t. Whether he’s living at home with me or living in a supported living home without me, I’m still his mom. Nothing changes that. Nothing changes the love. Nothing ever will.

When a Thank You Note Means More

You know what I don’t understand? Apart from Advanced Calculus, I mean. And word problems. It was always hit or miss with those. But in the grand scheme of things what I really don’t understand is why children have cancer. It’s horrible enough for adults, but even before my dad’s bout with it, I wondered why kids had to go through that level of suffering. Why any level of suffering? I could not wrap my mind around it. Sometimes I would pace my hallway or lie in bed at night, cursing because it didn’t make sense, because it shouldn’t be this way. I just couldn’t understand why.


Nigel is enjoying the afterglow of being a graduate. He sleeps in every day, except for the early morning dental appointment he had last week. Sure, he’s had summer vacations for many years, but this is different, and he feels it. He’s earned this; he’s had to work above and beyond the call of duty to achieve it. And through the generous graduation gifts of family and friends, he’s been able to purchase a new laptop for himself, which he has graciously lived without for over four months since his refurbished one crashed. He never complained, not once. I was shocked and grateful.

And after over 18 years of either writing thank you notes for him or helping him to write them, I knew that I would need to facilitate the thank you notes for the new computer. I also knew that my efforts would be met with monumental resistance. First of all, although I’m not sure if it’s been formally diagnosed, Nigel displays characteristics of dysgraphia. He refused to hold any writing utensil until age 7. At the age of 13, he was finally able to indicate to me that writing caused pain to his hand. He supposedly had access to an AlphaSmart at school, although I’m dubious as to the extent of that. As it stands now, his printing looks like that of a seven-year-old (at best). I do not say that to embarrass him – on the contrary, to highlight how challenging it is for him.

Therefore, the eleven thank you notes were typewritten. I helped him to compose the messages, and then I showed him how to format the page so that he could cut them out and glue them to the inside of the cards. The only things he had to write manually were the names and addresses on the envelopes, on which I drew guidelines with a pencil. I also wrote the addresses out on a separate sheet of paper so that he could see them better to transcribe them. It was quite a production, and one I undertook only because I knew that, with assistance, he could do it. If he couldn’t do it, I would have written them on his behalf as I’d done previously. Our family and friends understand.

But it wasn’t his dysgraphia and help with formatting and content that was the hardest hurdle to overcome. It was the fact that he couldn’t understand why thank you notes were necessary. The social understanding that is compromised by autism causes this. Yes, it affects one-on-one social interaction, as we all know. But even someone who’s had years of social skills therapy may still have trouble with the “big picture” application of social understanding – why we are expected to do certain social things that people without autism take for granted. The why is inherent in our social understanding, an area in which Nigel is still significantly “from another planet,” as he said years ago to describe himself.

Even though I had given him ample warning (days) that we were going to do the thank you notes, when the time came, he flipped. For a full ten minutes he paced and tiraded, he yelled and cursed about how he couldn’t understand why he had to do this. It didn’t matter that I was helping him; he just could not comprehend the purpose of thanking someone for a gift. He couldn’t wrap his mind around it because the part of his mind that would understand it works differently. Finally, much to my relief, he calmed down and began typing, and although the whole thank you note process took at least an hour, he never complained again.


I’ve come to my own conclusion regarding childhood cancer: It just is. I will never understand it. It will never make sense. I just have to accept that that’s the way it is. And I suppose that after Nigel got his frustration out of his system, he realized that he would just have to accept the fact that properly acknowledging a gift is just the way it is. He may never be able to know why; it may never make sense to him. It just is. Apparently he’s now okay with that, and so am I.