The Journey: My Deepest Regret

aidan portland zoo

“I always felt like I was the older brother.”

“I knew I couldn’t count on you.”

“You met my physical needs but that was it.”

These are things I’ve heard over the past few months from my younger son, the one who doesn’t have a developmental disability. He turned twenty this month, and we’ve had some difficult discussions about him growing up with a special needs sibling and a full-time single parent. Prior to hearing these words, I hoped I hadn’t done as badly as I feared. I had hoped he would be okay, that he wouldn’t resent me for the areas where I had failed him.

I was wrong. I honestly did the best I could with the limited support I had. But I should have tried harder.


I’ve heard from different sources (including a seminar I recently attended) that kids who have special needs siblings either overachieve to compensate or underachieve as perhaps a subconscious way to get their own needs met. And for those in the latter group, the worst time is supposed to be after age 18, as they’re entering adulthood. Their development seems to be in a holding pattern; they are stymied, directionless, depressed. Many of their needs weren’t met while growing up, and it affects them, more than most people realize. More than I realized.

Yes, many children have far worse childhoods, some full of abuse and trauma.  So, no, having a special needs sibling isn’t the worst that could have happened to my son. But he has a right to feel the way he does, to view the whole experience the way he did, and the need to be validated for it.

The special needs sibling? His needs were met twofold, as evidenced by how well he’s doing in adulthood (with daily support). But what about the sibling without the disability? Weren’t his needs just as special? Just as crucial to be met?


He’s twenty, and I’m just now teaching him to drive. For whatever reason he said he didn’t want to when he was younger. But the sad truth is this: I was then, as always, preoccupied with meeting his brother’s needs. So he’s ready to learn to drive now. He needs to. And this is a need of his I can fulfill.

So help me, every day I will look for more.

[Image: Aidan, age three, at the Portland zoo] 

Things I Learned from Divorce


Seventeen years ago this month, my divorce was finalized. I think more than anything else that’s happened in my life, all these years later, being divorced makes me feel like a failure. (The only thing that comes close is losing my house, which happened four years ago. But that’s another story.)

Typically in the western world it takes two people to want to get married, but it takes only one person to want to get divorced. And although I’m sure it’s hard enough on the person who wanted to do it, to the person on the receiving end it can be devastating. I could wax poetic about the feelings of betrayal when infidelity is involved. And when your parents are going through a divorce at the same time you are, it’s a whole different kind of miserable. You certainly can’t lean on them for support.

Even so, I thought I did everything right – I didn’t bad-mouth my ex in front of my kids. I thought we didn’t need to have child support court-ordered because my ex would send it every month and not “forget.” I tried to be friends with him after it was a done deal. I tried to be magnanimous about it, and I ended up feeling like a fool.

But you can’t get everything right. It’s divorce, after all. If everything were right, you wouldn’t be doing it in the first place. Here, then, are the Top 10 Things I Learned from Divorce:

10. Don’t think if you’re nice and civil in front of the kids they won’t know something’s wrong. They will, even if they’re little.

9. Don’t take for granted that your spouse will always be your spouse if you don’t make it a point to frequently tell him or her how much you appreciate them. They deserve the best from you.

8. Don’t assume because you look pretty good no one would ever cheat on you. Let me tell you, it’s a rude awakening.

7. Don’t beat yourself up when you realize your role in why things went downhill. It might not justify the other person’s role in the demise of your marriage, but that factor is not worth your focus. Learn from it and move on.

6. Don’t be a martyr. Ask for help, especially if you have special needs kids.

5. Do prepare your kids. If they have special needs or they’re not able to understand when you explain things verbally, tell them visually. Neither of my kids could talk at the time, one was/is autistic, and auditory processing was very difficult for both of them. I bought a book called Mom’s House, Dad’s House that had a cover with two separate (but whole) houses on it and a tree in the middle. It helped the boys visually make sense of what was happening. There was still a lot of anxiety, of course, but at least they had something to go on.

4. Do take the high road, but don’t be a doormat. Protect yourself emotionally. Value yourself.

3. Do communicate. Just because you’re not “fighting” doesn’t mean everything’s great. Be proactive.

2. Do see your spouse as the most important person in your life. Yes, even more than your kids. It’s impossible to have a great marriage without that. This is not a justification to neglect your kids and not nurture your relationship with them. Parenting is a gift and a sacred calling, and our children deserve our full presence in their lives. But you have to put your spouse first. I didn’t, and I should have. This is one of the most important things I learned from divorce.

1. Love is not all you need. It takes so much more than love to create, nurture, and sustain a good, fulfilling marriage. Love is why you do it, but it’s not always how.

The Call You Can No Longer Make

call dad

I was six years old. A long-time friend of my father’s was visiting from the East coast, and we were returning from taking him out to dinner. It was late, and I had been dozing in the car on the way home. I woke up when we pulled into the garage, but I wanted my dad to carry me, so I continued to sit curled up on the back seat and hoped I appeared to be sleeping. At some point my father reached in the car and pulled me to him to carry me to my bed. I wanted to seem convincingly asleep, so I let my arm drop backwards over his shoulder and stick out to the side, as if I couldn’t control it. My dad’s friend, a photographer, commented on the position of my arm and said that he wanted to take a picture. Afraid of potential repercussions (slide shows with the extended family viewing the photo projected onto the living room wall), I let my arm fall back into place as my dad carried me upstairs. He rarely carried me, but I loved when he did. 


I read an article recently that was written by a man whose father had died five years before, and I was very interested in it because as of last month my dad has been gone five years. I was searching online for opinions about how long it takes to get over the death of a loved one since I still grieve for my dad, sometimes as much as I did in the beginning of the process.

Many sources say it takes ten years, some say five. But this article, written by the man whose father had been dead for five years, says that you never “get over” the death of a loved one. Furthermore, the man (who was not a counselor or therapist, just a guy missing his dad) said, Why would we want to? Why should we want to “get over” someone who had been a huge part of our lives, who loved us unconditionally, and whose love we still feel?

“Getting over” means different things to different people. To some it means when their life will get back to some sort of normal. Others just want to know when they will stop crying every day. But I think for many of us it means when we finally make peace with the fact that they’re really gone, that we won’t wake up after having dreamt of them and think, I need to call Dad; I haven’t talked to him in a while, and then with great sadness and disappointment remember that you can’t.

And that’s what I think that guy meant by “getting over” – that those things will never stop happening. Those things are normal, and we should embrace them. Those things mean we haven’t forgotten, and that our loved ones will always be with us.

[Image credit: DaftPoster]

What We Can’t Say About Autism

different diff-but-not-less

It used to be, eight years ago, parent bloggers could write – without experiencing any backlash – about the challenges of raising an autistic child. Soon, though, we were chastised for saying “autistic” – we were told to say “with autism.” We had to use person-first language, even if we could clearly see that autism affected every area of our child’s development, every facet of his identity, not just how he communicated and interacted socially (or tried to), but the way he thought.

There are others who posited that the difference between “autistic vs. with autism” was mere semantics. The issue turned into a feud that I don’t think has ever been laid to rest. Many haven’t agreed to disagree. Some, myself included, believe that parents should refer to their own child in their chosen way without being criticized. We’ve all heard “you know your child best,” and I wholeheartedly agree.

And now in some circles we are being rebuked for even writing about the parental challenges we have faced. Our children are the ones who experience the challenges – no parent would deny that. But parents of non-autistic kids write about parental challenges they face. Why is it frowned upon for parents of autistic kids to write about their struggles with providing the best life possible for their children, and the trials along the way?

I’m not talking about complainers, blamers, or haters. I’m talking about loving parents who want to connect with other parents who walk the same path. Who hope, through their writing, to continue to debunk the myths and eradicate ignorance.

They do talk about the struggles, the monumental challenges their children have faced. They talk about their children’s determination to learn to communicate or to filter the sensory input that prevented them from doing things they – the children – wanted to do. They say things like, “He’s come a long way.” And that’s the latest criticism – that they had to “come a long way” to therapy-out their different-ness. (Part of me understands where the nay-sayers are coming from – I really do, and I’ve written about that topic before.)

She’s come a long way.

I say that about my happily-introverted self after I spent a year and a half training to teach two-day workshops for my job. It was agony, and I cried a lot during the process. I am now certified to teach the workshops at all levels and I no longer have panic attacks. I’ve always been happy being an introvert – and still am – but I’ve come a long way so I can do the job I love.

I say that about my non-autistic son when he overcomes something that was particularly challenging. His own sensory issues prevented him from riding a bike until his teens, which he now does avidly. He became a voracious reader after having experienced a good amount of difficulty in learning to do so, and he kept trying.

He’s come a long way.

And I say that about my extroverted autistic son when he began communicating by using wooden letter blocks to spell out words and, years later, can have a spoken conversation. I said that when he tried to be social at the playground – because he wanted to – and sadly alienated all the kids. And so many other things he worked hard to achieve – because he wanted to do them, and he didn’t want his different-ness to prevent him from doing so.

Now, I proudly tell people that he’s in a supported living program in his own apartment. I honestly can’t find anything questionable about saying that my son has come a long way. In the validating words of Temple Grandin, my son is “different, but not less” and has proven it over and over again.

Taking Bipolar to Work


I become aware of a familiar hollowness in my chest, like something has been removed and I don’t know what it is. I feel shaky. I suggest to the participants in the 2-day workshop I am co-training that we take a break, even though it is not time for one. I go outside and begin pacing. I go up and down the sidewalk, turning around in the driveway of the building where the training is being held. I go back down the sidewalk and return to the driveway, pacing in an arc pattern. I do not feel right. I do not know yet what is going on, but it’s obvious that something is wrong. My co-trainer notices and I say I’m not feeling well. She suggests I go home, that we’re halfway through the second day and she can finish it from here. I apologize and thank her, go back inside to get my things, and get in my car and drive off. I cannot sit still in my seat; I feel an overwhelming urge to continue pacing. I feel like sobbing as I’m driving so I keep gasping, trying to stave off the deluge that I know is coming. I should probably pull over but I just want to get home, feeling guilty that I have left my colleague and that, for the first time at this job, I have “allowed” my disorder to affect my work. After what feels like an eternity I pull in my driveway, run into the house, and sob as I pace rapidly around the dining room table, unable to stop myself. I now realize that I am in the middle of a mixed episode of bipolar, and the relentless churning pain in my head makes me want to die.


Any employer, co-worker, or client can Google my name and it won’t take them long to discover that I have bipolar. Online, I don’t hide it. In my writing, I try to bring about more awareness of what it means to have bipolar and how it affects people individually. I try to fight the stigma. But the unfortunate truth is that how I present myself online and in my personal life is very different from how I present myself in my professional life. And it’s hard for me to reconcile that.

If I didn’t have bipolar, I wouldn’t have to worry about my colleagues or clients questioning my ability to do my job (read here for details about what I do as a behavior consultant). And despite the fact that on rare occasions it has affected me on the job, I believe that my bipolar enables me to identify with my clients and understand that part of why they feel the way they do and how it affects their behavior. This enhances my ability to provide better ideas for how to support them.

I am one of the lucky ones. In addition to some lifestyle modifications (mostly dietary), I only have to take one medication and it does its job well. I rarely experience debilitating episodes (although I would within a few days of stopping my meds). So why don’t I talk about my diagnosis in my place of employment? Why the “don’t ask/don’t tell” stance?

I don’t really have an answer that makes sense, even to myself. Maybe it’s the fear of seeming incompetent. Or being stereotyped by whatever that person’s exposure has been to bipolar, and having to prove that I’m not like that. But I hope at some point I’ll be brave enough to risk being labeled with the stereotype, to start the process of ending the stigma by starting the conversation about it.


Maybe my co-trainer had gone online at some point and knew that I had bipolar. I don’t know. Maybe she could just tell that something was wrong, regardless of the cause, and I needed to leave. Since that episode happened, I’ve often wondered (with dread) what I would have done if I had been training the workshop by myself (which is usually the case). I berate myself about it. But emergencies happen. Would I have felt ashamed if, in the middle of the class, I suddenly began to experience severe abdominal pains and could not continue teaching that day? I would have felt bad about needing to stop, but not ashamed. A sudden bipolar episode warrants the same viewpoint. It’s not shameful. It’s not a character flaw. It’s a health issue just like any other requiring medical attention. That afternoon I called my doctor, who prescribed an emergency medication, and I was back to work the next day. Life goes on, and hopefully we are the wiser for it. All of us.

[Image credit:]

The Middle Ground of Middle Age


It was my birthday. After class, I changed my clothes and drove to the large chain drugstore where I worked. I went to the back area where the employee lockers were and stowed my purse and jacket and walked back to the time clock to clock in. In the hallway I was greeted by my boss, a middle-aged woman with short curly brown hair and oval glasses, dressed in the same gray smock uniform as me. She stood there, her shoulders hunched as always, and stated, “It’s your birthday! How old are you?” Twenty-two, I said. “Aw, you’re still a baby!” I felt deflated. Every day after that I wondered how old you have to be to garner some respect. I’m still wondering.


All my life I’ve never minded getting older. In fact, at certain points in time I actually looked forward to it, and not just when waiting to be able to drive a car or buy a bottle of wine. After 21, what age is there to look forward to? At age 25 you can rent a car (which, being a traveler, was important to me). And at some unspecified advanced age you “get” to retire (of course in recent years I became painfully aware that this does not happen automatically).

There was that saying – “Don’t trust anyone over 30” – coined by activist Jack Weinberg in 1964. Someone posed that “over the hill” referred to age 40. When I was 5 my grandmother was 58 – and I thought she was really old. Now we hear “50 is the new 30!” and such. I think we Gen-Xers are staring into the face of middle age and wondering what the hell happened. Some of us in our 40s are starting our second of the two careers we’re predicted to have in our lives. We need glasses. We get hot flashes. We have to be careful of our backs.

I’ve never been bothered by birthdays, but in turning 45 this month, I realize that in the last couple of years my body is not what it used to be. And that bothers me. Not the numbers of the years, but how they make me feel physically. I could “grow old gracefully.” I could “not go gentle into that good night.” But what I want to do, what might take me a while to figure out how to do, is to find the middle ground. To be devil-may-care but graceful, too. To embrace but not resign. To finally garner some respect, and to live life in such a way that I can.


It’s my birthday. I have a busy day at work and then go cook dinner for my 21-year-old autistic son, who lives in a supported living apartment. I have dinner with him every Wednesday. The only years he has ever observed my birthday were when someone else facilitated it. But tonight when I arrive, he opens the door and wishes me a Happy Birthday. Then in his deep monotone voice he says, “I got a surprise for after dinner.” He opens up his freezer and shows me a half gallon of ice cream. It’s Tillamook, an Oregon coast brand from a town famous for its creamery. And the flavor Nigel chose was Birthday Cake. Ignoring the lump in my throat, I thank him and tell him how thoughtful it is of him. A part of me wonders if someone reminded him, but if so, no matter. He went to the grocery store, he bought the special ice cream with his own money, and the fact that he did it is better than any birthday gift I could ever hope for.

[Image credit:]

The Writing on the Web


An electrical cord has somehow twisted around his neck. He lies on his back, his arms pinned behind him underneath his convulsing body. His head is smashed at a right angle against the wall and there is so much froth in his throat he is choking on it. This is how I find my son.


A quick online search yields a list of over 20 anticonvulsant/antiepileptic drugs on the market, and the long-term use of many of them can compromise the health of the liver. Take into account that some people need to take more than one of them (either because one seizure med is not enough or because they have both epilepsy and bipolar, and one anticonvulsant is not enough to keep mania in check), and it’s definitely cause for concern.

My son Nigel fits into the latter category. Some people with bipolar find that an anticonvulsant works to stabilize them, and others don’t. He needs an anticonvulsant to treat his epilepsy and lithium to control his mania. Both are hard on the liver, and not a day goes by that I don’t hope for another option, something that manages his disorders without compromising his physical health.

I have been considering the use of Charlotte’s Web for treatment of his seizures (for those unfamiliar, Charlotte’s Web is a high cannabidiol (CBD), low tetrahydrocannabinol (THC) Cannabis extract. It does not induce the high of recreational marijuana strains that are high In THC). In the past week I have talked with the parents of two different clients of mine about the success they’ve seen with their adult children taking this medication. There are many other parents who’ve experienced remarkable results with their children who have epilepsy. However, even with plenty of success stories, a position statement by the American Epilepsy Society maintains:

“The recent anecdotal reports of positive effects of the marijuana derivative cannabidiol for some individuals with treatment-resistant epilepsy give reason for hope. However, we must remember that these are only anecdotal reports, and robust scientific evidence for the use of marijuana is lacking… at present, the epilepsy community does not know if marijuana is a safe and effective treatment, nor do they know the long-term effects that marijuana will have on learning, memory and behavior, especially in infants and young children.”

The italics in that quote are my own; I find it ironic that AES would say this. Long-term seizure activity already negatively affects cognitive function, including learning, memory, and behavior, hence the urgency to prevent seizures from happening. And if pharmaceuticals aren’t effective, resulting in more seizures, wouldn’t we want to do something different? Yes, it’s true we don’t know the long-term effects of Charlotte’s Web. But when weighing the consequences of using an undeniably effective non-pharmaceutical treatment that we don’t know the long-term effects of versus the consequences of continued seizure activity – which we do know the long-term effects of – I’ll take the former.


I don’t know how long this massive grand mal seizure had lasted. And I don’t want to think about what would have been the outcome if he hadn’t been at my house when it happened, or if at that moment I hadn’t gone upstairs to ask him something. He was unconscious and choking on his own bodily fluids. He would have died. He hadn’t had a seizure in over three years and I assumed that he would continue to be seizure-free. But the fact is that the effectiveness of a medication can diminish over time. And Nigel is living proof of that. Living.

Answering “So What Do You Do?”

cocktail party2

She tells me that her 11-year-old son, who is on the autism spectrum, hits her and laughs. When he watches a DVD he will put his Mario Brothers backpack next to him on the couch and talk to the backpack. He carries it around and hugs it. He dumps all the shampoo down the drain. She tells me that he holds knives to his throat and threatens to kill himself.


As a Behavior Consultant I go into people’s homes and talk with them about some of the most difficult aspects of their lives. I am part confidant, part counselor, part troubleshooter, part scapegoat. I work with families, foster providers, and agencies. I create and implement behavior supports for people with developmental disabilities, ranging in age from 3 to 62. I use visual supports to provide structure and consistency for those who have great difficulty functioning without it, often resulting in challenging behavior to try to meet their needs, especially if they are not able to communicate through speech.

Here’s a sample of what was on my calendar this past month:

  • Write a Functional Assessment for a nonverbal 5-year-old whose grandmother is his primary caregiver
  • Via a sign language interpreter, teach sex education to a 23-year-old deaf woman who has Fetal Alcohol Spectrum Disorder
  • Drive an hour and a half to a different county to work with a 4-year-old girl with Down Syndrome who hits her head on the floor
  • Create social stories and checklists for two different teenagers and three preteens, all having significant challenges with emotional self-regulation
  • Develop strategies of positive reinforcement for a ten-year-old boy with FASD who exhibits physical and verbal aggression, property destruction, and other difficult behaviors
  • Teach a 2-day workshop on positive behavior supports and protective physical intervention
  • Attend a 3-day conference on dual diagnosis – people who have both a developmental disorder and a mental disorder, like my son (who has both autism and bipolar)

It is equally an honor and a challenge. [Troubleshooter.] But sometimes it’s a huge challenge. Some people expect me to have a magic wand. I make a suggestion and they try it once or for a week and get frustrated when it “doesn’t work.” [Scapegoat.] Others want to spend the entire hour talking about personal things that have nothing to do with their child. [Confidant.]  Some people cry when they’re describing what they go through and how isolated they feel, and that’s when I look in their eyes and tell them I’ve been there. [Counselor.]

I didn’t set out to work in this field, in this position. I didn’t want to be this when I grew up. But at different points in my life I wanted to write, I wanted to teach, and I wanted to be a counselor. And because my 21-year-old son has multiple disorders, and because I wanted to support other parents so things could be easier for them than they were for me, after years of writing and volunteering and connecting, this position was offered to me. I am now all those things I wanted to be when I grew up. And I have a really cool response to that cocktail party question.


She speaks Spanish, and we communicate through an interpreter. I tell her I understand, that my son went through a period of time when he would bang his head on the floor and wanted to “rip the autism out” of his head. That I found him one night threatening to hang himself. I ask if she would like my son to come and talk to her son, tell him that he felt the same way but came to terms with it, with being different. She says Yes, tears forming in her eyes. I explain to her that her son views Mario as his friend; my son felt that way about Winnie the Pooh. A squeeze bottle with water and a little dish soap inside solved the shampoo problem. If only they were all that easy.

What Becomes of Six and a Half Pounds

N 2121 years ago I held this guy in my arms for the first time and was paralyzed by the thought of how much my life would change, having no idea that it would change even more than I had thought it could. This guy, who was 6 ½ pounds, would set my life on an uncharted course and lead me to a place completely different from where I thought I would go, from where I had planned to go. (Where was that? Oh, yeah. An editing job in New York.) My career evolved into something I would have never considered, and I couldn’t feel more fulfilled.

Today marks 21 years of this guy leaving his mark on the world, on me, on our family. 21 years of trying to figure him out, wondering what would happen next, what I needed to do. 21 years of keeping up with him – and trying to keep my sanity. 21 years of wanting to “give him back to the circus” (as my grandmother would say). And 21 years of loving him.

Last year he turned 20 (I know that probably didn’t need to be pointed out, but stay with me), and the whole two-decade milestone was cool, but something’s different about 21. For many parents of kids with special needs, it’s when their kids no longer attend a public school transition program. (Nigel refused to attend high school longer than his peers, but when you’re voted by your senior class as Most Likely to Survive a Zombie Apocalypse, high school’s not really on your radar.) Anyway (thanks for staying with me), turning 21 is not always about drinking (because when you have autism, epilepsy, and bipolar – and take meds to treat them – any amount of drinking is ill-advised, with emphasis on ill).

But turning 21 is about adulthood. For the last five years I’ve written on my websites about Nigel’s “transition to adulthood.” And – my God – we’re here. This is what adulthood looks like for my son. Yes, he will continue to grow and evolve as everyone, regardless of abilities or disorders, does. But for right now, I look at this young man who has come into his own, I look at the hurdles he has faced, the mountains, and what he still contends with every day to navigate this world, and I marvel at him. I marvel at his tenacity, evident in infancy, his adventurous spirit, his creativity, his insightful musings and comments, his wit (have you read the Nigelisms?), and his steadfastness as he envisions his dream of having a career in filmmaking.

Twenty-one. I went out to dinner at Red Lobster with my dad and my grandma. I moved to a different state (for the third time). I changed my college major (also, I believe, for the third time). That was 21 for me. For Nigel: dinner at a gourmet burger joint with his family. Later in the year, maybe getting his GED. Maybe working at Home Depot and starting to save for film school. Adulthood on his own terms. Making his way in a world from which he constantly needed relief, but in which he always desperately wanted to be.

Happy 21st Birthday, Nigel. It’s all you.

A Suicide of One’s Own

There are different ways to say it:

Took his own life.
Self-inflicted death.
Died at her own hands.
Offed himself.
Committed suicide.
Killed herself.

Multiple ways to wonder the same thing: Why?


Though her body of written work is extensive and laudable, Virginia Woolf is best known for her extended essay “A Room of One’s Own” and her self-described “mental disease” – what is now termed bipolar disorder – which led to drowning herself. Statistics say as many as 15% of people with bipolar disorder will commit suicide, half will attempt to, and nearly 80% will contemplate doing so (

Recently a good friend of the family became one of the 15% (perhaps that is yet another way to say it). He had three prior attempts that we know of. He had severe bipolar. And he had no success with medication.

There are those who would say it should “come as no surprise, considering his history” – as if grief were unwarranted for those who wanted to die. There are those who would say he “gave up on life” – as if the physical pain caused by malfunctioning neurotransmitters in his head had not played a significant role.

And then there is this:


We may never really know what goes through one’s mind, what demons lurk there, what insufferable agony. There could be many reasons. But does knowing the reason make up in any way for our loss? Our grief? Is it because we want testimony that, no, there was nothing we could have done? Or do we want to berate ourselves till our own dying day that we should have done something? That berating ourselves absolves us of the fact that we didn’t?

But it’s human nature to wonder why – probably because we want to understand. We want to make sense of the seemingly senseless. Most of all we want closure, and to many people knowing why seems to be one way to get it. Why isn’t it enough that a person was in pain? There must be more to it, some think, more reason to have done something so horrible, so irrevocable, so final. So selfish, some think. They don’t ask why; they only judge.

Whether we seek closure or make judgments, we somehow must come to terms with the untimely death that is suicide. We can grieve, we can postulate; we can put someone on a pedestal or we can condemn them. We may try to understand. And sometimes we must accept that trying may be the only thing we’re able to do.

[Image: The Suicide by Édouard Manet]