A Mac and a grizzly

This was the winter wonderland yesterday, but now everything’s melted.

I have two stories for you today. Last Thursday I brought Ben for his weekly physio session. Ben complains bitterly but he is always in a chipper mood afterwards. As we walked down the hall to the 2nd floor rehab gym, there lying on the floor was a two-inch grizzly bear character. Ben was delighted with this find, but I told him we would put it on the bench in case someone lost it and was coming back to look for it.

Imagine my surprise when I got on the elevator on the 5th floor this morning and the same Grizzly was now sitting on the handrail inside. Ben loves to send his characters out into the world in different ways, and it seemed this Grizzly had had a bit of an adventure since last week.

Remember my post about my urge to buy the new iMac computer so that we could put the Proloquo2Go communication software on our iPad? We couldn’t modify it with our old Mac computer.

Well, we got the computer on Saturday. “You know why I have to do this, right?” I said to D’Arcy. “Yes, I know why you have to do it, even though I think you’re pulling at straws,” he said.

The keyboard is so tiny on the iPod that it’s challenging to use and I’m hoping the larger keyboard on the iPad will be easier. I think the picture symbols will be easier to see and with the latest technology, I should have a leg up in trying to customize it with our own photos. Ben's psychologist also recommended the iPad.

So we walked through the Eaton’s Centre carrying our big Mac box and then yesterday D’Arcy spent four hours on a support line with Apple because for some reason we couldn’t download the Proloquo app without losing the existing apps on our iPad. In fact, what I wanted to do was transfer the most recent backup from the iPod to the iPad but it at first proved impossible. You know how everything about a Mac is supposed to be intuitive and simple? Not so much for us!

In order to get Proloquo2Go on the iPad, we had to wipe our other apps, including the great Sign 4 Me app. After hours of instructions and comments like “That’s odd” from the support person, D’Arcy was rendered incapable of speaking -- about iPods or iPads or iMacs.

“I simply don’t know,” was the only way he answered questions last night.

I was later able to restore a backup from the iPod onto the iPad – minus the photo libraries. While restoring it, it said it could transfer some items and not all.

So now I have a ton of work to do to simplify the vocab and get real photos in there.

And Emma from Greece was correct that there is a way to 'turn off' the ability to delete the Proloquo2Go app, but we haven’t figured it out yet.

I have to thank Pam, a support person from AssistiveWare, who is trying to help us. Pam is the parent of a young adult with disabilities and I'm hoping will write us a guest blog.

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Education and intellectual disability

It's interesting to see how divergent approaches are to teaching students with intellectual disability.

Here in Toronto, we've found the emphasis is on life skills -- even if the child is perfectly capable of doing academic work at their own level.

I'm told that most high school students with intellectual disabilities don't get high-school diplomas. I'm not sure if that's because they're directed into non-credit life-skills programs in Grade 9, before they're given a chance.

One of the students who did beat the odds is Ashif Jaffer. But the Toronto student with Down syndrome is now in danger of losing his first semester at York University. The university won't allow a teaching assistant to attend exams with him -- an accommodation he had at high school. See School denies access: student.

Meanwhile, U.S. dollars are being invested in college programs specifically for students with intellectual disabilities: College uses federal grant to encourage students with intellectual disabilities to attend college.

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The transition learning curve

I mentioned a New York Times essay by Susan Senator (photo left) in this blog about youth who won't live conventional adult lives. Susan is the author of Making Peace with Autism and The Autism Mom's Survival Guide. Susan left a comment on my blog yesterday and I asked if she could share a bit about her son Nat's move into adulthood (photo right before his prom). As the parent of a child who won't have the conventional job or college schooling, I was struck by a comment Susan made on a Linkedin group at Hopeful Parents: "I'm Susan Senator, parent to Nat, 21, dx severe autism. He has a bright future ahead of him and I am going to make darned sure that continues!" A bright future?! This was something I had to investigate. Susan suggested I post a recent piece of hers about searching for a Day Program. Thanks Susan!

The transition learning curve
By Susan Senator

I’ve begun Part II of Nat’s Transition to Adulthood: the Day Program. November 15 is right around the corner, so that is my goal date for having his entire Transition setting set up. He will leave school that day and move out of his school residence soon after. This is a lot to contend with emotionally and pragmatically, for Nat and for my family. That’s why I’m writing these blog posts: to tell all of you out there to get going as early as possible in your research and in your emotional process. You look at your little guy now and think, “Oh, God, I can’t imagine him grown up. What will that be like? What will his peers be like? Will they be like a bunch of lost souls shuffling around from van to mall everyday?”

I will get to that. The only lost souls are those who are not feeling happy and purposeful in their lives. That includes you. I hope you are not a lost soul. But more about that later. I suggest you approach this the way your autistic child approaches learning any new skill: break it down into baby steps. Think about your modus operandi, how you operate, how you achieve things, and go with your own model. Maybe you like to do things methodically, one appointment after another. Maybe you do things in bursts, like me: one appointment or maybe ten, and then none for months. Whatever works.

First you have to learn about who you are dealing with. I would try to understand the key players, the names of the departments and organizations involved. How do you learn this? You go to a workshop. Pick one workshop for this year, one Transition to Adulthood workshop. Write down your questions. Ask a few of them, but not all. Keep in mind that as you dip back into this stuff, it will clear up, concept-by-concept. There are Federal Programs and there are State Programs. Federal are for everyone, State differ. Who is your State point person? Cultivate a relationship with a friendly introduction via email or phone.

Next you learn about the programs themselves, what they offer. SSI, SSDI, Section 8, Developmental Services, DayHab, Residential Supports. Don’t worry yet about how to get into them. Just learn their function. I tried to figure out all of Section 8 in one fell swoop: forget that. These days I’ve been touring centers in the Greater Boston area that offer a program M-F, 9-3. These are typically Medicaid-funded (Federal $) therapeutic programs, i.e., no employment/earning component. These are called “DayHabs.” The centers vary in quality and goals; some do highly individualized curricula and others have more of a general schedule with a choice or two. They go out into the community (it should be much more than malls, and if it is malls, then be sure your guy is learning money skills and dealing-with-the-public skills). Visit the program. Tour it and get a good feel for it and the clients it serves. Are they engaged? Happy? Watching TV? Can you imagine your guy there?

Imagine your guy there: he is part you, part the child he is now. So you think about how you would feel there, but not using your deep and complex social knowledge. Think about what he likes to do, and if you can’t name a concrete activity, (mostly Nat likes to be active, with people but not talking to them), figure out when he is happiest. Does this place match that?

(Be prepared for developmentally disabled adults. They are not as good-looking as kids with DDs. Think about it this way: no adult is as beautiful as a child. We age and uglify. Sorry. But don’t look at these people as lost souls, broken, pitiful, sad. An unusual face is just that: an arrangement of features that you don’t see everyday. It means nothing. A voice that speaks in grunts or not at all is still fully human, FULLY human, with an inner life, even if that inner life is pictures swirling around his mind, or beautiful sounds. I don’t freakin’ know! I’m just saying, get past what they look like. It’s just a body. We can’t all be magazine people.)

Many of these centers (also known as Vendors, or Service Providers) also have Day Programs, which are not DayHab, or therapeutic only. Day Programs often have a volunteer or employment option, but you need to find a way to pay for it.

Next you find out how to pay for it. You need to find out if a program is an entitlement, or Medicaid/Federal money, or if it is something you have to push for with your Developmental Services point person (see above). You need to find out how to set up your savings so that they can help your adult child someday but not get in the way of his funding. I still don’t really understand this one, but I have a lawyer who does. You are looking to set up a Special Needs Trust.

About guilt: try not to go there. Even if you have resources to support your child, you don’t want to get into a situation of depending solely on that, especially when you are gone. You have to think of your adult child as an independent adult — that is his right, it is about his dignity. These programs help him become an independent adult, as much as possible. We are so lucky that our society attempts to support those who cannot do it all on their own. We are a society that spends tons on building roads and highways and bridges. We are a society that subsidizes farmers and to some degree, big corporations with tax breaks. Everyone gets help and benefits from our government to some degree. Why shouldn’t your guy? Why is one considered a handout and having our roads built for us considered a given? Think about it. I wish we could all chip in and get along.

I have listed for you the big steps. You break them down. Do one thing at a time. Start a notebook. Save business cards and telephone numbers. Build your network.

Above all, give yourself a break, take your time, but still: do it.

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The game of Scrabble

Something miraculous happened last night.

My son Ben, 16, played a game of Scrabble with me. This was miraculous because Ben has a terrible time focusing, which makes game-playing challenging.

But this time Ben was interested. He even enjoyed moving his letter tiles around to look at word possibilities.

He came up with “ARM.” Then he came up with “ALY” – the name of his cousin, though she uses an “I.” I was ecstatic. Later he produced “ICON.” I don’t know if that was just a lucky guess because he couldn’t speak to explain it.

I had to keep score because Ben can’t add.

We had a lovely time, but I couldn’t help thinking that he would never be able to play at one of our family gatherings, with his cousins.

Just the day before, we celebrated my birthday at my mom’s house. Scrabble is a competitive game in my sister-in-law’s family. Ben’s cousins are brilliant students – one in second-year university already holds a prestigious research grant. My SIL rarely lays Scrabble tiles down without forming double words and knows all the obscure ones most people have to look up in the Scrabble dictionary. My other children joined in the game and it moved swiftly around the table, with words like ‘FEDORAS” and “FOLLOWED” filling the board.

Ben sat off on his own in a chair, reading an old picture book that had something to do with acorns and adventures and making the odd sounds he produces because he can’t speak. He couldn’t participate because of the fast pace and complex language.

And somehow I couldn’t help thinking that this Scrabble game represented the value our family had always placed on education and academic learning. And it made me think how I, too, in the past had revered intelligence and somehow felt it was an ability a person earned through hard work. To me it seemed to be a higher or more refined quality, let’s say, than physical beauty or athleticism. In fact, I once had an argument with a university friend who said if she had to choose between beauty and brains, given our culture, she’d choose beauty. To me that showed a certain superficiality and materialism that I didn’t associate with intellect.

But since my son Ben was born I’ve had to acknowledge that my intelligence had little to do with anything I ‘did’ or ‘‘worked hard at’ but was, instead, simply a gift bestowed upon me at birth. I was lucky.

My son was unlucky and will always struggle mightily to learn and to retain information and ideas in his head.

He can’t join in the family games of Scrabble and he won’t enjoy the intellectual growth, social life and freedom of university.

And while I was sitting there watching our family play Scrabble and Ben was babbling to himself and reading or playing with his Star Wars characters – no doubt with intricate storylines playing themselves out in his silent imagination – I couldn’t help remembering that when I was pregnant with him, my SIL had said: “We have to be careful not to compare our children.”

Sometimes I envy my brother’s life. His child-rearing is coming to an end and he’s able to take great satisfaction and comfort in his children’s burgeoning independence.

But rather than wishing that Ben could be more like his cousins, I think my real wish is that my family better knew the inner world of Ben. They don’t know his sign language and they don’t know how to interact with him. I don’t know if they’re able to see past his odd and anxious ways.

I wish I could tell them about how Ben came up with “ARM” and “ALY” for Scrabble and they’d be as excited as I was. I wish I could tell them that when I was prodding Ben to send an e-mail to his dad yesterday, he chose the correct “too” in “I miss you too” and my heart leapt. But we don’t have a common frame of reference anymore. We’re still playing Junior Scrabble and they’ve moved on to post-graduate work.

I assume they feel sorry for us. I think that’s how I would have felt about our situation, before it happened.

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A life of being, having and doing enough

I read about this book and my heart softened for a moment, and I took a deep breath in and out.

Doesn't it sound grand? A life of being, having and doing enough.

Wouldn't it be sweet if we felt we were 'enough' as parents of children with disabilities and that our children were 'enough' as well? Not 'enough' in the sense of 'good enough' -- but really, we wish we and they could be 'better' -- but 'enough' in the sense of 'full,' complete' or 'whole.' 'Enough' so that you could look at your child and only feel gratitude swell in your heart?

Instead, this morning I found myself feeling frantic about moving Ben's development forward.

I haven't had time to revise the communication app Proloquo2Go on his iPod and to actively get him using it. I gave the iPod to Ben on the weekend and he deleted Proloquo (a mistake, he said). My husband then spent ages trying to put the app back on unsuccessfully. He then attempted to put it onto the iPad I bought at Christmas, even though we couldn't afford it, because I thought it was a piece of technology Ben had to have. In doing so, he realized our Mac computer at home was incompatible with the iPad because it's so old.

So by the time I got to work I was feeling desperate that I HAD to buy a new Mac computer. In fact, I found myself in a place I've been so many times over the years with Ben. Where I latch onto some treatment or technology or experience that I believe will be life-changing for him. And I tell myself that if I can only get my hands on it, he'll be able to break through a disability barrier and realize himself more fully as a person. And I launch into all kinds of mental arguments as to why this is the only viable course of action.

Yet when I look back, I see I've sometimes made choices that weren't wise and didn't make sense -- or focused on the wrong things at the expense of others.

And it makes me wonder about finding a balance between forever questioning what 'more' can be done to help my child (in my case almost an adult) and starting from a place of loving and appreciating who he is, right now, and what we already have.

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Quick update

I was fascinated by this blog by Gina Gort who took a 10-day 'retreat' away from her family, which includes three children, two of whom have disabilities: Return to myself. It sounds wonderfully restorative.

We are holding a planning day for Ben on April 9 with the help of facilitators from Community Living. This is a two-hour session where we bring together some key people in Ben's life to look at his strengths and dreams and how we can support him in leading a rich adult life. If you've done this kind of planning, do you have any tips on preparing?

This is an interesting interview about the ethics of prenatal testing for Down syndrome. It's between Dr. Brian Skotko, a clinical fellow in genetics in the Down syndrome program at Children's Hospital Boston (who has a sister with Down syndrome), and Dr. Lachlan Forrow, director of ethics at Beth Israel Deaconess Medical Center.

Happy weekend! Louise

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An open letter to parents

I'm delighted to share a letter written by Caroline McGraw (left) to her parents, William (back left) and Donna Fischer (right), in which Caroline recalls how her parents have cared for her younger brother Willie (back right), who has autism. Caroline writes about “how to see disability as opportunity” at A wish come clear.

An open letter to parents:
On what your children remember

Dear Mom and Dad,


As your 28th wedding anniversary approaches, I’d like to tell you what I remember about how you’ve raised Willie, and what I’ve learned by watching you.


My first memory is of a diagnostic center, the playroom where I waited as Mom and Willie met with the doctors. When you came out, Mom, you knelt down to hold me, and you were crying. I didn’t know what was happening, but I knew that something was wrong. I realized for the first time in my life that you were vulnerable, and that you needed to hold me. Yet what strikes me now is not the sadness of that day, but the beauty of your spirit. Mom, you reached out for me. You drew me in at a time when you must have wanted to push everyone away.


Likewise, you reach continually out on Willie’s behalf, seeking therapies and doctors and medications and activities and services for him. You encourage him in his interests, yet you also allow him the space he needs for himself, to be himself. You have taught me how to count his small victories, to see the steps of progress he makes as miracles.


Dad, I remember how many times you took Willie with you on work trips, on errands to Costco, to Edie’s for haircuts. You’ve made sure to include him in all aspects of your life. And I have never seen you act self-conscious or embarrassed by his behaviors, strange and frightening though they have been. You model a relaxed, take-it-as-it comes attitude for me and for others, and your corny humor dissipates many awkward moments.


In the times when Willie struggled with violent outbursts and self-injurious behavior, you took on bruises and cuts. You made sure to protect Willie from himself when necessary, and you’ve protected us as well. Rarely did you let the pain of keeping our family together show through. I can’t imagine what that’s cost you. You continue to keep the faith as Willie’s condition improves, and that patient trust is bearing fruit.


Of course, these things do not always come easily for either of you. I have seen you struggle. I have seen you doubt your decisions. I have walked with you into the places where there are no ‘right’ choices, only choices less terrible than others. I have sat with you on the floor of our upstairs hallway, none of us knowing what to do or how to carry on.


We have been totally at a loss, and yet we have never been 'lost,' because we have been together.


I love you, and I am amazed by you every day.


Caroline

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