Category Archives: Autism & Epilepsy

Why We Must Presume Competence

disability

My son Nigel has long referred to his autism as his “difference.” If someone he knows is nice to him, he’ll say, “She understands my difference.”

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Earlier this year I accompanied Nigel to his annual Individual Service Plan meeting with his service coordinator. We’ve been to this building several times before for other meetings, so he was quite familiar with it. The agency’s mission statement is posted on the wall inside: “…to assist adult persons with Intellectual and Developmental Disabilities and their families to create and direct their own services in an atmosphere of dignity and respect.” I love their philosophy – very person centered and supportive.

But as we sat there in the lobby waiting for the service coordinator, Nigel said, “Why can’t it say ‘Developmental Difficulties’ instead of ‘Developmental Disabilities’? It makes it sound like I can’t do anything.”

I told him he was absolutely right. It should be Developmental Difficulties.

There would be, unfortunately, the notion that if it’s just a “difficulty” fewer supports and services would need to be in place, and less funds would need to be spent. It’s so easy to lose sight of the fact that the person is doing well because of the supports and services, and if you take those away the ability to function successfully, to experience some autonomy and have a higher quality of life, is considerably decreased.

But with the supports and services in place, it’s amazing how much a person with Developmental Difficulties can achieve. Right now Nigel is starting a program called Job Discovery. It’s managed by Living Opportunities, the organization that also enables Nigel to successfully live in his own apartment due to support staff who check in with him daily (read here for more about his experience with this program).

His Job Discovery coach takes him to different businesses in the community who employ individuals with Developmental Difficulties (and anyone else, for that matter), and he meets with managers there to determine if the job would be a good fit for him and if he would enjoy it. So far he has checked out a pet store and a TV station (yes – perfect for someone interested in a film career!) and will look at a restaurant. He gets a few days to shadow someone and “test drive” the job before being hired, and will make the same wage as anyone else would in that position.

It used to be that programs like these (Job Discovery and Supported Living) did not exist for people with developmental disabilities because we assumed it would be a waste of time and funding – they could work in sheltered workshops (at much lower wages) and live in group homes (if they couldn’t live with their parents). This was a huge improvement over institutions, but it still did not presume competence.

So what do we mean by that? We believe that a person can do more than what we might otherwise assume, and we put supports in place to facilitate their success.

A person with Developmental Difficulties can, with support, have a job like anyone else in the community. He may, with varying levels of support, even live in his own apartment.  He or she can – and will – experience a fuller, more satisfying life, the kind we all strive for and deserve.

[Image credit: Vantage Mobility International]

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.

The Writing on the Web

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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.

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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.

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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.

Transition Check-In: The Three

It hit me today that I have reached the point where I don’t always know where Nigel is – and I’m okay with that. He is in a supported living program. He’s not in college or driving. But he turns 21 in two months, and he is a walking, talking special needs success story.

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It was fourteen months ago, with no small amount of trepidation on my part and his, that Nigel was given the key to his own apartment. In his words, he has “learned a lot” since then and wisely remarks that he is still learning. He is semi-independent, receiving daily support from Living Opportunities, a local organization that provides support for adults with developmental disabilities. They check in to make sure he is taking his meds, take him grocery shopping, help with doing laundry, keep track of medical appointments and provide transportation to them, among other things. I pay his bills out of his Social Security income and obtain and fill out all paperwork associated with his various benefits. I probably do a lot more I’m not even thinking of at the present moment.

It should be noted that no success of his came via luck. It involved tenacity, determination, and years of all kinds of therapy for a five-year-old who, when asked by a doctor, could not say his own name. Whose severe sensory issues precluded going to the grocery store and any other public place because this was a time when no one thought to suggest wearing noise-cancelling headphones. Instead, he shrieked and bolted. The list of his challenges, past and present, is long.

But now the guy safely rides his bike everywhere, up to twenty miles away and back. He handles its maintenance himself. He pushed his bike with its bike trailer attached all the way up a 3600-foot mountain because he was training to climb a 9500-foot one. (And with the accompaniment of my amazing, wildland firefighter sister, he succeeded.)

He takes good care of his cat. He likes to vacuum (read here why this is huge). He refers to his autism as his “difference,” and he has begun to ask me for dating advice and ways to meet “young ladies” who would understand and accept him.

Most importantly, he comes and goes as he pleases. Yes, you read that correctly. He comes and goes as he pleases, and I feel okay about that. I’m no longer frantic at the thought of him out alone in the community. Yes, sometimes I worry – he is vulnerable socially (being taken advantage of) and physically (bike riding in a city – or on a mountain). But from his own apartment he comes and goes as he pleases and I’m not wringing my hands all day long.

I don’t know which is more significant.

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He calls them “The Three” – his wallet, keys, and phone. He got tired of hearing me list all three items individually, having to say Yes, yes, yes to each separate inquiry, and he came up with a collective term. So now when I pick him up to come and spend the night at the house or to leave for some other activity, as we head for the door I ask, “Do you have The Three?” And he says Yes, only once, and then we go about the rest of our day, truly blessed, well aware of what The Three symbolize for both of us.

The Unwelcome Presence of Epilepsy

I started to hear a repetitive banging noise coming from the living room, and I yelled out, “Stop the banging!” When it did not stop, I marched out to the living room. “I said to stop the banging! What are you doing?!” I yelled again, looking at Nigel, whose body was half-off the couch with his legs stuck under the heavy coffee table, banging it. I thought perhaps he was acting out a scene from the movie or laughing in an exaggerated way, but that was before I saw his face. I pulled back the blanket that had been covering him, and then all at once it hit me. The violent convulsing, the profuse frothing at the mouth, the eyes rolling back in his head: He was having a seizure.

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My mind likes to torture me by replaying the events of Nigel’s first seizure five years ago. The above quote comes from the post I had written about it, and I still remember everything about that night. Mostly I remember the terror.

His subsequent seizures were the same. Always the violent convulsing, the eyes rolling back, the frothing at the mouth, the rigid limbs. Often the unmistakable thud of a body hitting the floor. I still hear it. Every time I hear a thud, even when Nigel is not in the house, I freeze, my heart races, and my PTSD kicks in. The force of his seizures is still with me, probably always will be.

The first medication we tried for him was not very effective. He continued to have seizures on a regular basis, like clockwork. Finally I convinced his aging doctor to try a different anticonvulsant, and we got it right just the second time out. It worked. I still lived in fear of the seizures, but they appeared to be controlled, and I felt so fortunate.

Last summer marked two whole years that Nigel, to the best of our knowledge, had not had a seizure. His neurologist ordered a 24-hour ambulatory EEG to see what the seizure activity in his brain now looked like. If it had decreased, we could begin the slow process of reducing the daily medication that, although a blessing, compromises his liver.

Nigel was excited about the prospect of eventually not having to take pills every day, of people not having to remind him. And he is also concerned about liver damage since his grandfather died of liver cancer. We were optimistic about the EEG.

But the results indicated that the amount of seizure activity had not decreased. At all. In his frontal lobe he still experiences the frequent, random spiking that, according to his doctor, could cause him to have a seizure at any time. We were disappointed that the medication could not be reduced, but immensely grateful that it was doing its job, and doing it well.

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This month marks three years that Nigel has been seizure-free. Three years! We are so blessed that not only do we live during a time in history in which we are able, in many cases, to control seizures through medication, but also because we found one that works for Nigel. I quickly remind myself of that whenever I lament that the epilepsy is still with us, still maintaining its unwelcome presence in his frontal lobe, continuing to compromise his executive function ability and his cognitive processing. It may always be this way. But at least we have the upper hand.

[image credit: Science Life]

The Journey: Our Neurological Perfect Storm

On average:

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

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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.

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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

5 Questions for a Parent of a Child with a Rare Seizure Disorder

Hope for a Sea Change cover art

Sometimes Life in the Different Lane pushes you further than you ever thought you could go. I’m honored to interview my friend Elizabeth Aquino, author of the memoir Hope for a Sea Change and A Moon, Worn As If It Had Been a Shell, her blog. The exquisitely written Hope for a Sea Change chronicles the first year of her experience with her daughter’s life-long struggle with epilepsy. I am indebted to Elizabeth for her candor, openness, and generosity in doing this interview.

1. You had mentioned that you came to like people you “wouldn’t otherwise have dreamed of knowing or even liked.”  What other aspects of having a child with a disability have you experienced that you wouldn’t have if Sophie weren’t in your life?  

I honestly look on my life before I had Sophie as another one entirely, so everything that’s happened since seems marked by her presence. I know that I would never have made my home in California and discovered the part of the world where I am happiest despite however many hardships I face. I love the Pacific ocean and the temperate air and the easy access to desert, mountain and sea. I also love the accessibility of progressive ideas about health and natural medicine and acupuncture — alternative medicine in general — that I never would have learned about nor embraced had I not had Sophie and sought alternatives for her.

2.  What was it that caused you to feel “a strange sense of relief despite having handed my baby to a stranger,” especially since it sounds like you hadn’t gone into the room with her?

It’s difficult to articulate how powerful and life-changing Dr. Frymann was and became in our lives. She was old and very stooped and small, even then nearly twenty years ago, yet she exuded peace. I’ve very much learned to trust my instincts since meeting and entrusting Sophie to Dr. Frymann. I think she embodied all that was inarticulate inside of me, my dread at how Sophie was being treated, my intuition that she was being harmed and not helped, etc. When she took Sophie from me, I felt relieved somehow of the burden, that someone was finally going to help us.

3.  You had written if someone told you that you would eventually make California your home, and that you would have two more children there, you would have “shaken my head and laughed.” At what point did you decide to make the move?

I made three trips out to southern California for six weeks at a time over about two years when I was still living in New York City. The osteopath’s treatments were really helping Sophie, and I found going back to dark and cold New York harder and harder, even though I did love living there. Sophie seemed to thrive during her times in California, so my husband and I thought it might be good to just move out temporarily to give it a go and commit to treatments twice a week for as long as it took. When he got a transfer and promotion with his job, and his company actually paid for our move, it seemed destined. Still, we didn’t expect to stay forever, but one year turned into two and then three — and now we’re working on the seventeenth!

4.  Did Sophie’s disability affect your decision to have more children?

Yes, it did. I’ve written quite a bit about that, but deciding to have another child was both terrifying and entirely impulsive. I knew that I had to have more children. I wanted more children. When Henry was born and developed normally, I began to think that I should have at least another so that we weren’t always defined as the family with one disabled and one not — that sounds terrible to me now, but at the time I wanted Sophie to not only be a part of a larger family (more people to love her!) but also to give Henry support as we aged. That kind of thinking came much later, though, when it became more and more apparent that Sophie would be dependent on us for the rest of our and her life.

5.  If you could go back and tell your younger self anything to prepare her for the parenting experience ahead of her, what would you say?

Hell, I don’t know. Run away now to Bora Bora and don’t look back? In all seriousness, I’d probably advise my younger self to get marriage therapy and individual therapy sooner. I’d accept help — any kind — and I’d exercise more.

Thank you, Elizabeth!

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

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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.

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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.”

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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