Today I attended a summit of the Health and Human Services Agencies with the Massachusetts Governor, Deval Patrick. Held at UMass Boston, the summit gathered together about 300 people who work in or advocate for some sector of the population affected by the EOHHS (Executive Office of Health and Human Services) for example, people who work for Healthcare for All, for example, or the Massachusetts Society for the Prevention of Cruelty to Children). And me. There were one or two Simply Parents there, but mostly it was the agencies and vendors.
The first half of the summit consisted in speeches, from the Governor and a few others who wanted to make it clear that they need help making their government, EOHHS in particular, more responsive to the consumers (families like yours and mine). Randall Rucker, Executive Director of Family Service of Greater Boston gave a moving speech about his travels to Zimbabwe and the utter chaos and horror of life there (in 2005), and yet the small areas of human dignity and innovation he found that were evident everywhere. He used this as an example of how we in that room could build great new systems even in the bleakest of economic times. Then the Governor gave us a directive, which was to find barriers to innovation in the Health and Human Services arena; to discover ways to remove those barriers; and to name what is the next frontier of social services innovation.
One young man spoke up to talk about how he is a success story for DMH (Dept. of Mental Health). He used to be homeless and “out of his mind,” as he put it. He found his way to a program called Vinfen (which Nat has participated in for social outings) and he is completely on his feet, working, and apparently happy. He got the biggest applause, and deserved it.
A panel of people spoke about how to get money steered towards non-profit groups, particularly those that are innovative. A representative of SEIU was there, a union that has partnered with Personal Care Attendants in Massachusetts, to deliver better services in that area. My friend and neighbor Vanessa Kirsch was also one of these panelists, there to talk about her organization, New Profit Inc., which is all about non-profit philanthropy. Vanessa also happens to be married to US Senate Candidate Alan Khazei, which made me doubly attentive to what she had to say (Disclosure: I am a big Khazei supporter, though honestly I believe two of the other candidates, Martha Coakley and Mike Capuano would do excellent work as Senator Kennedy’s replacement. Alan, however, is the most dynamic, has the freshest ideas, is the most grass-rooted, and is extremely progressive in terms of the issues.).
I had the chance to meet the Governor and to give him my book, and to talk for a few moments with him about autism education — it turns out that just last week he had toured a big autism school in the Greater Boston area and he was very impressed with what he had seen there. He said he was glad to see a parent (me) here at this event. I don’t know exactly what he learned from visiting the school but I do know that for a governor at least to tour an autism organization is a step in the right direction for our state. Autism education being on the map in that respect can only be a good thing.
The meat of the program occurred after a brown bag lunch, where we broke into four groups, all of which were to address the Governor’s 3-point directive pertaining to the removal of barriers to innovation. This part of the summit enabled the smaller groups to go around the room listing what they thought were the biggest issues and then to brainstorm over possible solutions.
Several people stood up to talk about the issue of “silos,” whereby one agency does not communicate with the other and so there is confusion and duplication of effort. Others stood up to discuss the need to end the strict territorialism within the departments, to put the emphasis back on the consumers rather than on the budget. Others talked about the disincentives for serving individuals within their own homes and communities — that there is still an emphasis on workshops, dayhabs, and institutional living. I have nothing against those — Nat may have to use a dayhab program if he does not have fulltime employment, for example (and what are the chances he will?), but I definitely see the need for those who can to be given the support to live independently and on their own terms.
I stood up to talk about the parent perspective, namely that we parents often don’t even know where to begin. We don’t know who to ask what. We find that three years down the road we missed out on some major source of support or some important milestone. We have enough to wring our hands about in terms of not doing enough for our kids; but we need help at least knowing what to ask for and when. I suggested a parents’ “Cheat Sheet,” which would map out one step after another as a child transitions out of the school system and into the state system.
Afterwards we all reconvened to summarize what each group had come up with — some items were interesting to me, such as how the human service workers do not feel valued; how even the term “non-profit,” is defined by what it is not, rather than by all the things it does. There was an emphasis on focusing on real, relevant, and measurable results. On involving staff in decisions. On incorporating peers and families at all levels of the decision-making. And of course, of bringing those most affected to the table.
The Governor ended the session with an inspiring quote from Abraham Lincoln: The dogmas of our quiet past are inadequate to our stormy present.” But most inspiring of all was when he said, “Taxes are the price of civilization, but you need to make the case that the money will not be going towards the same old thing.”
Ned’s often telling Ben (and me) not to judge our insides by everyone else’s outsides. He means that people may look a certain way, like they have it all together, etc., but that it’s more complex than that. I, on the other hand, am approaching others from my insides, as screwy and twisted and small-intestined as they are. The upshot is, I see everyone as smoothly as they show, and then I think I’m so different because I feel differently inside than how they seem to be. And Ben, who is in the throes of sixth grade social angst, does just what I do. He is so much like me that I often have trouble knowing how to help him.
Last night I was drifting off in bed, taking inventory of the day. But something was not right. So I had to poke around until I found it; and it was Nat. I was thinking about how much more he does in his House than here, and how that bothers me. I was remembering how much I had to prompt him: “Nat, want to listen to some music?” or “Nat, want to watch something?” And this made me feel bad because I was imagining Post-22 Nat, living some place where they don’t prompt you to do something with your down time because the ratios are more like 2 to 8, rather than 1:1 or even 2:5 as it is here in our home.
Then I got this picture in my head of Nat smiling and rocking and talking to himself in his Adult Home and nobody intervening and that’s that. As I thought of this, Ned was walking around, getting ready for bed and had no idea that I was swimming in such murky stuff so late at night. This realization took me away from Nat’s world for a minute and into Ned’s. I watched him putting stuff away and taking off his glasses, beginning to anticipate soft, welcoming bed, and I suddenly did not want to yank all that away from him.
But — too late. He saw my face and he knew that something more than “Mmm, covers,” was on my mind. “What is it, Sweetie?” he asked.
I could see Nat in his quiet, small grown-man world and it gripped my heart and wouldn’t let go. Such a small life. I couldn’t bear it just then. But how to answer Ned’s question, without plunging too deeply and shrinking delightful bedtime for Ned? “Nat,” I answered. “He’s so — well, he can hardly do anything without prompts, and when he’s on his own, they’re not going to prompt him so much.” I didn’t want to stop there, because if I did I would be handing it all to Ned in one heavy lump.
I waited a moment, and so did he, and then I had a new thought. That’s the disability, right there. I said that to Ned. “This is what it means that he is severely disabled.” It’s not about mobility, or talking, or behavior management; it is about his own inner ability to advocate for himself. To be active, rather than passive.
Yes,” Ned said softly, “He is very disabled.”
We lay there in silence; I, trying to hold up this new but also very old revelation and keep it from smothering me. And Ned, with the covers newly torn off of his momentary peace of mind about Nat, and also probably hoping that this would not lead to an hour’s worth of miserable conversation where he could be reading his Kindle and drifting off to my rhythmic snores.
Nat, Nat. How did this happen, how come this is your life? I saw him with that smile, maybe not even knowing how narrow his world was, and that hurt my heart even more.
You’re judging your insides by his outsides. No one had said it, but I felt it. Just because I would not want that life, doesn’t mean it is bad to him. As the weight of sadness started to lift, I sighed, and also reminded myself that I just do not know how it is for him. That I’ve done everything I can — maybe not everything someone else could, but everything I can. That I’ve loved him deeply and worked for him all his life and now, he is who he is. I have no idea how that feels to him, and I never will. Why assume it is bad for him, just because it would be for me?
Looking at the image of Nat, I see that he is smiling, after all. So maybe I should, too.
Being Jewish is a way that I get to understand what it’s like to be different from the majority. This is the time of year when Christians begin their holiday rituals and it is so interesting to observe apart from it all!
There are all sorts of feelings I experience this time of year: excitement, anticipation, the loosening break from routine, along with a sprinkling of wistfulness, envy, and feeling left out. And I wonder: is this what it’s like to feel autistic in a neurotypical world? Black in a white world? Gay in a straight world?
My students — who are freshmen — are getting so excited about going home for their first holiday (Thanksgiving). One young woman simply sighs and smiles and whispers, “I just love Thanksgiving. Right afterwards, my family gets out the Christmas decorations and we put up the tree!” She is so adorable in her warm happiness, so perfectly on the brink of life, and so excited to be who she is and where she is.
Another student, equally delightful but in a completely different, horn-rimmed glasses and piercings and cynical way, sits next to her and of course feels very differently. “My family is so lame,” she says, frowing . “We don’t put up the decorations until just a few days before. So lame.”
However different their own family traditions may be, there is still this common knowledge that they share, however, that I am not a part of: the how and when you start your Christmas. The only part I experience is buying presents for people, and having time off. And, since I’ve been with Ned, I have been going to his family for Christmas, where they do a very traditional, almost Dickens-like Christmas dinner (roast beef, Yorkshire pudding, mince pie with hard sauce, gorgeous china and old heirloom silver, plus we dress up!). It is lovely. And it has become mine. But it is not something I grew up with, so it is not, shall we say, in my bones.
There was a time when, in my thirties, I tried to decorate for Chanukah, by making these blue and white garlands of ribbons and lights and silk flowers. But having lights on my house made me feel like a pretender, like a Wanna Be. I felt like I was covering something up, or flattening something out about myself: this was not what Chanukah looked like to me.
Chanukah, to me, is not lush and gorgeous, velvet and crystal, evergreen and merlot. It is not proud spruce forests and knee-deep freshly-fallen snow. Chanukah is more of a desert holiday, an oil lamp shining from the dark ruins of a hard-fought war; yellow light on brown stone. Songs in odd minor keys, that give you an uncertain feeling, rather than a deep affirmation of joy. Oily, salty, barely-sweet potato pancakes (potato?! WTF?!), rather than thin golden sweet butter cookies.
Both are beautiful and desirable in their own way. But trying to cross over into the other is definitely a move outside of the comfort zone. For some, perhaps, it is utterly impossible.
This plea came in from the ARC of Massachusetts. The Legislature is bailing on its responsibilities again. They have ended the year’s session without resolving the budget!!!
Ask Legislators to reconvene — unfinished business can’t wait.
People with Disabilities need help now!
The state House of Representatives adjourned formal sessions for the year last night, having failed to address important business. Those matters that it didn’t address could have helped stave off further damage to the lives of thousands of people with disabilities and their families.
As a Boston Globe editorial today points out, the House “rejected or hacked away at many of Governor Patrick’s proposed cuts [outside Human Services]… and rejected the governor’s request for authority to make emergency cuts to agencies outside the executive branch.” See the Globe editorial here.
This is all bad news for disability services, as it limits the Governor’s ability to spread cuts across a broad variety of agencies beyond the Exec. Office of Health and Human Services. Or as the Globe puts it, the Legislature’s failure to grant the Governor expanded 9C authority “only concentrates the pain — especially for human services agencies” and will have “grim consequences.”
Some of these consequences can be averted if the Legislature goes back into formal session to give the Governor the authority he needs to limit cuts to disability services. We recognize that this is only a short-term solution. Our leaders need to go further by adopting a new state revenue strategy. However, without this step, people with disabilities and their families will be at much greater risk.
Please use the Action Alert to email your legislators as well as Speaker DeLeo and President Murray to request that they:
Reconvene a Formal Session
Vote to give the Governor Expanded 9C Authority
Vote to give the Governor authority to transfer funds between line-items.
Edit this message with a personal story and call your legislators to follow up.
Sometimes I wonder if Nat feels freedom the way I am feeling it today. It is my day off, and I drove downtown and looked for a book to read. Found nothing, bought a hot chocolate and just sipped it, allowing the creamy sweetness surround my tongue and shoot into my brain, and continue on wherever it goes. I felt free.
I was light, not burdened as I often am by a day off. So often I see the day off as this expanse of time, a road with a vanishing point almost invisible, it is so distant. I have to walk on that road, in the hot sun, just walk. Today there was warm sun, steamy air, and a false light that kept blaring through confused clouds and into walkers’ eyes — strange light for late November. Not at all spring light, but the same, thin brightness that shatters your eyes, makes you reach for sunglasses, but just as quickly throw them up on your forehead because it is just not sunny, only bright.
I did not feel like my usual self, heavy with tasks and rules. Does Nat feel the rules as much as I do? His are different; mine are things like: buy only skim lattes, not hot chocolate. Make sure you have a dinner plan and the food to work with. Get your grading out of the way. Make sure all laundry baskets are empty for the weekend.
What are Nat’s rules? Does he know that he is not supposed to stim loudly in public? How does that feel to him? Is it a mild nuisance, like my skim latte over hot chocolate; or is it a gross impingement on his needs?
Is he happier in the freedom of his home, unstructured and unpoliced? Or is he happier in The House, with his lists and rules? He was so eager to return there last weekend; I wonder if sometimes his empty days here stretch before him like a long, boring road, like they do with me?
It’s fascinating and frustrating to me that people on both ends of the spectrum — from “High Functioning”/Aspergers to “Low Functioning”/their caregivers — sometimes cannot get along. Both tend to be dissatisfied with the kind or degree of attention they get. I want the infighting to stop.
From what I can tell, it appears that the HF autistics, those who can fairly readily communicate, whether by keyboard or verbally, feel that they ought to be given a seat at the table — or in fact, the head of the table — of mega advocacy organizations like Autism Speaks. This group feels that organizations like AS focus mostly on the downside of autism, particularly visible in the “lower-functioning” members of the spectrum (you can include Nat among this latter group), because it is easy to elicit attention and funding with the problems of the LF autistics. The HF-Asperger’s believe that this presents a skewed and negative view of autism, and causes people merely to aim at curing and stamping out autism, rather than learning about what it is like to actually be autistic, the uniqueness of this neurological makeup, and most of all the necessity for society to accommodate and include. The HF-Aspergers group often want to emphasize that autism is a part of them, it is an aspect of who they are, and to hate autism is to hate part of themselves, which is devastating, debilitating, and a dead end.
Many parents and caregivers of LF autistics, (like me) by the way, also feel that AS emphasizes the negative of autism, as they did in this latest video, and make our wonderful kids seem like horrors, and turn our lives into a pity party rather than looking within at the complex, layered, family lives we lead. Nor does AS try, in videos like I Am Autism or Autism Everyday, to interview autistics themselves to get an idea of what their (multiple, infinite, human) perspectives are.
Often parents and caregivers of LF autistics, however, also believe that they require the attention of groups like AS because that is how they are going to get help in the end — through this kind of private-sector fundraising. (I am far more a believer in public programs, which should be better funded, so that they can do what they are meant to do). This group of LF-autistics’ caregivers believe that the HF-Asperger’s group do not really understand their concerns, their lives, which are largely given to taking care of, educating, managing, financing therapies of, their autistic loved ones. The LF-concerned group sometimes believe that autism has devastated their lives and their children’s, and mostly because there are very few paths that lead to helping them. The behaviors that occur can be terrifying, violent, and destructive. They can also be exhausting, mind-numbing, and depressing, as in the case of children who are not potty trained, who can only eat one kind of food, who run away. People need to understand this. Difficult behavior is not the only aspect of autism, or co-morbid aspect of autism to be more accurate, but it is a huge problem, for autistics and their families and if Autism Speaks can help with this, then that is a good thing.
But — what is the nature of the help they give? Is raising awareness enough? Yes, if it actually leads to strong lobbying for insurance coverage of autism therapies. Yes, if it leads to more money to support families, job supports, group home care. Yes, if it leads to giving the more socially able autistics an opportunity to guide policies affecting autistics.
If AS is only making the public terrified of autism and flu vaccines, then they will only be adding to our problems as a society. We will see a resurgence of terrible diseases, far worse than H1N1.
The high-functioning autistics do deserve to lead the conversations at Autism Speaks’ table, right alongside the LF-autistics’ caregivers. Autism Speaks must listen to the full spectrum and not just the terror of some caregivers. (Or else they should rename themselves Autism Speaks For Some.) But the HF-Aspergers group must be responsible representatives and be sure they are truly representing the interests and problems of those on the spectrum who are less able — or if they work hand-in-hand with the caregivers who understand firsthand the issues for their loved ones.
If we could all work together, a round table where there are no closed minds, and stop all the exclusion — imagine what we could do.
I must remind you that after all this is my blog and if you came here today for autism, you will be disappointed. Or maybe, take it as a reminder that regardless of your struggles, life is still here, to be grabbed up and embraced.
But no one knows
They only see that love is fresh
When skin still glows.
They tell their children
The t.v.s say
that all of that mellows
even goes away
Yet we keep the secret
Wrapped in blankets tight
It smoulders, not smothers
In darkest night
I think I know now
Why some things come when old
Why we’re warmed by their power
and rarely feel cold
For maybe the real love
and the explosive desire
bursts and pops only after years and years of
the lick and hot kiss of time’s fire
I used to be so sad on Nat’s birthday. In fact, the way I began the first (2005) edition of Making Peace With Autism was, “The saddest day of the year for me is November 15, Nat’s birthday.” It was true then. Back then, and all the years leading up to then, I would feel as if I’d been hit by a train. I had to act happy, but I was not.
I was still living in the world of young motherhood, where you are surrounded by the noise and need of children, the early days of everything, the busy, the breathless, the feeling of eternal family life. Living within the unconscious, sweet narcissism of young parents, who believe they own these beings they’ve given birth to.
By the time the 2006 edition came out, I had asked my publisher to change the first line but they couldn’t. Not sure why. But I knew that it was no longer true, and it wasn’t fair to Nat to have those lines in there. So I am sorry they are in there.
I was much more careful writing this second book (Autism Mom’s Survival Guide (for Dads, too!). I wrote it thinking that I didn’t know what Nat would think of it, and therefore I wanted to be careful. I was honest — I’m always that — but respectful.
No, the dark magic of Nat’s birthday no longer has any power here. I don’t need my young man to be eager for presents, or care about cards. I don’t need him even to like the cake (he didn’t this time, not sure why, probably because he is still a little sick). I did need him to hug me tight when he left to go back to The House, but he did not want to. That made me cry, but only a little bit.
In true maudlin style, I determined to have a good cry, so I broke out the Allman’s Sweet Melissa, which I think of as Nat’s song, and I played it, holding a wad of paper towel in my hand for the tears. But I only cried a little, before I felt silly. Nat is not a Melissa. Back then when I was pregnant, I thought I was going to have a girl, and that I would call her Melissa. That was just the beginning of life not giving me what I had planned for.
When Nat was around 5, I remember telling Grandma that his birthday always made me sad. “Why?” she asked.
“Oh, because — you know — ” I stammered. “It makes me think of how he’s — you know…”
“Why would you be sad on his birthday?” Grandma just did not get it; she would not hear of it.
This pissed me off back then.
Not now. I get it now. She knew so much that I didn’t know.
Nat is not Sweet Melissa, and Nat is not a sweet baby and Nat does not care about his birthday and he requested to go back to The House and he does not really want to hug me, but — okay. I’ll live. That’s who he is. It’s not who I am, it is who he is. He has a right to be that, and not to be changed. He’s 20. He’s an adult. I’ve got to stand back, and let him live his life the way he wants to. Happy Birthday, Nat.
I got Nat’s virus, so I’m miserable today. Ben seems to have it too. Ned is getting there. Max is so far unscathed and off at Hannah’s, where presumably they are illness-free. I’m in sweats and eating straight honey to soothe my throat. My coughing is explosive, just like Natty’s was.
So the thing is, tomorrow is Nat’s 20th birthday, and I usually make a very big deal of it. I wrack my brains for just the right thing to give him, some way to hold him here, to get his attention, to make him happy. But he’s probably happier not giving his attention, not being held here! So on his birthday, I have to take it easy.
Since I’m sick, that’s no problem. I’m just trying to hold my head on while I cough, so Ned is making the cake — chocolate and chocolate. Nat helped, and got to lick the bowl. To me it is so paltry a birthday celebration, but what do I know? I’m dumb with DayQuil.
Want to know how pathetic I am? I have been enjoying having Nat home sick. He doesn’t have the flu, thank God, but I guess some other much lesser thing that gave him a tiny fever yesterday and a huge cough. The nurse called me, and I got down there as soon as I could (I was downtown, finishing work). I had just emailed the school telling them that I wanted to know the moment he was sick so I could decide what to do. Of course he could have stayed at The House, and in fact he was there when I came in at 11 ish. They do round-the-clock care, and they mean it. A lovely young teacher was staying with him.
But in comes La Mother who scoops him up and takes him home. I’m just a girl who cain’t let go. First thing I did was feel his face: hot, but not scary hot. I sat him down and I made him hot cocoa, from scratch. I was totally in my element. He slurped it carefully while I made him a bagel, but I noticed he just picked at the bagel. His self talk (formerly known as “silly talk”) was a tiny croak.
“Nat, you don’t have to eat the bagel,” I said, knowing that he would need to be told that, and would not necessarily stop eating it on his own. (That, right there, is the disability: the apparent passiveness, the lack of self-awareness, despite the name for it: aut-ism, being unto oneself.)
“You don’t have to eat it, yes.” He said, and then I really knew he was sick. He went upstairs and lay down for a bit. When he came down again I had an idea: make him some tea that my yoga instructor friend brought me. She knows tea, for God’s sake. But Nat has never had tea. So I basically just dunked the chamomile-infused limp thing into the hot cup and then squirted in like three teaspoons of honey. Hot honey tea-like water! He sipped it carefully, self-talking with every gulp. I heard, at the end of one of the whispered self-talk phrases, “…coffee,” and I wanted to laugh. It was so good being able to take care of him, and to have him let me. I felt so close to him, closer than I have in a long time. It seems that my relationship to him is very much based on our physical proximity. I need the feedback to relate to someone; he does not. He’s lucky.
Anyway, Yay, he likes tea! I will now give him all the tea in China.
You’re with me now
And as long as you stay
Loving you’s the right thing to do.
First, Nat left and I was so unsure if it was the right thing to do. Everyone told me it was the right thing to do. Eventually I accepted that it was the right thing to do. Most of the time.
Now, Max is going to leave and I know it is the right thing to do. Everyone tells me it is the right thing to do.
But I am f’ing freaking out. Today he and I had had a discussion where he told me that NYU was his top choice. His top choice? When did this happen? How could we help make it happen? I got into a frenzy of organization and strategy. Interviews? Visit again? Early Decision? WTF? College? Leaving?
So while I was loading my car with groceries, I nearly burst into tears. They’re with me right now. Max is leaving soon. And I find myself thinking, “I didn’t have enough of him. I didn’t, I didn’t, I don’t know — something.”
Nat flashes into my head. Something familiar about that. Not enough. I had felt the same thing about him. I didn’t have enough of him. I never got to — what? What is it I wanted to do, what more did I need? Connection? I got it, in bits. Growth? Maturity into a lovely young man?
And Max? Connection? I had it in spades when he was little. I get it now, but it is — dignified, rationed. And oh, how he has grown, and matured into such a wonder. A young man with such a good heart, such good judgment.
So what more do I want? It is not something I can articulate. The tears talk.
Is this what it is with our children? We live in a blur of activity, of planning, or worrying. We play with them, smile at them, laugh, cry, wring our hands. But we don’t have enough. All we have is our love, and that is everything, but it is not what we think.
A dear friend of mine had an interesting “assignment” from her daughter’s high school English teacher. It was to make her own Polonius speech, and she gave me permission to share it with you, because I think it is a blissful piece, and a healthy way to view life no matter who you are.
As you continue to grow and find your own footing as an adult I would like to try and put into words the things I’ve found to be most important in life. As you know, I am very unorthodox about pretty much everything, which I know has often been a challenge for you. But all of us are always doing the best we can. We can’t do MORE than the best we can. We can just do the best we can. Which I guess is one of the important things I’ve learned. EVERYONE is ALWAYS doing the best they can, and if we can really see this and accept it we save ourselves a lot of heartache, especially when we look at our own behavior. When we look at things in retrospect or are projecting ourselves into the future, it’s very easy to think we could have done something better or we should be able to do things a certain way in the future, but all that is just thinking. The reality is we did and will always do only the best we can and no more, and that is ENOUGH.
I’m so happy that you are who you are. You surprise me a lot with your wisdom and insight and knowledge, (which is different from wisdom) and I don’t worry about you anymore. I used to worry when I saw you trying to be some one that you’re not, because I know how painful that is and because I see how beautiful you are as you are. You are kind, tolerant, smart, fair, curious, talented, introspective, funny, discerning, creative, beautiful and honest. Sometimes honesty stings, but in the end it is always “the best policy”.
I feel like I want to write more to you in another letter, but for the purposes of the assignment I write the following, much of which you already do without any problem:
Give other people the benefit of the doubt.
Take care of your body.
Be discerning about who you spend your time with.
Speak up for yourself.
Ask for and accept help when you need it.
Say “yes” when you mean “yes” and “no” when you mean “no”.
Keep your word.
Avoid becoming entangled in other people’s dramas.
Try not to take things personally.
Do what brings you joy.
Realize that everyone is doing the best they can, including you.
Avoid doing things that might compromise your judgment.
Listen to the voice within you that KNOWS what you should do
and follow that, even if others don’t understand or approve.
Trust that you are loved and lovable.
Look for the beauty in every person and situation.
Be open minded and open hearted and find a way to give back to the world.
Trust yourself. Trust yourself. Trust yourself.
Yesterday when Nat came home from school, I made him stand in the entryway so I could hug him. His face had a lot of stubble, and his skin was rough and smelled like food. I said, “Donnes-moi une baisse!” He looked at me, and kept walking. Then I said it again, pointing at my cheek. He pointed at his cheek. I said it once more, pointing at my cheek, and he did come over and kiss me. I exuded my usual joy with him and he went on his way, always the same, remove the jacket, remove the shoes, throw down the backpack, take out the pill bag and put it on the counter, run upstairs and unpack, leaving the dufflebag in the middle of Mom’s bed.
He was smiling faintly as he ran around, and that made me feel good, like maybe it had something to do with me. The tiny seed of hope explodes open, a shoot poking its way through old crusty winter soil. Ah, well. I was glad to see him, in any case.
Later that evening, when I said goodnight to him, I did what I always do, check that his PJs are adequate, ask him if he needs another blanket. Then he offers his face to me and says, “Kiss you goodnight.” I kissed him. I said, “Okay, how about kissing me?” And he does. He always will — if you ask.
Last night, I slept with a lot of consciousness, so I was happy to wake up because it hadn’t been much good. Yet with that kind of sleep, you can easily remember your bits of your dreams. The dream piece that stays with me is this: I was in Nat’s room, the same bedtime routine of straightening his covers or something, before he got into bed. He entered the room, passing me in the doorway and stopped to give me a kiss, which he had anticipated. (This was only a tiny leap, because he is so attached to his routines and anticipating everything.)
But then — the sweet cruelty of dreams — as he walked by me into his room, he rubbed my back, with that faint Nat smile. He rubbed my back, a few seconds of giving, of knowing what I needed and giving it to me. A lifetime of missed neural connections, corrected literally overnight.
Except that it was a dream.
Here’s why I hate competitive sports. In the end, it is all about winning. Winning by definition means somebody loses. Oh, right, so that next time they’ll try harder to be the one who doesn’t lose.
Except when you’ve got a person who only just recently figured out how to play a game, and why it’s a good thing to throw a ball away, so that it lands in one particular place as opposed to another. It turns out you have to do something with that ball if you catch it. Push it out of your hands, and everyone around you cheers. Get it to go into the basket, and they cheer even more. Plus, if you do that, you get to stay where you can run with your friends, rather than sitting still on the bench.
No problem, thinks Nat, or some facsimile thereof. For once in his life outside of classroom schedules and routines, he has figured out the gigantic puzzle of what people do together. (We think we are dealing with a puzzle, but let me tell you, the puzzle Nat has to put together of how things work makes our autism puzzle look like a four-piecer.)
But things must move forward, taking shape in one way and then, when that shape no longer fits its surrounding circumstances, breaking up and reforming. And so the Boston College Bobcats will no longer exist; now the entire team is being moved closer to Nat’s House because everyone on that team is actually from the House and not from around here. The rest of the Boston College team, the Cougars, which are Nat’s social group friends, will stay at BC, because they are from right here, Nat’s hometown.
But it is more convenient for the Bobcats to be a team close the where they live, near the House. The first problem with this is that we would have to bring Nat back to the House one day early for his practice; he usually stays with us until Sunday after lunch. Now he’d have to go back Saturday late morning.
The second problem is the real problem. In terms of skill, Nat belongs more with the Bobcats. Yet, Nat could conceivably stay and be a Cougar at Boston College with his social group friends. But wait: those guys are “higher functioning.” Would he be bringing the team down? And while functioning levels don’t matter when you’re going out together on a Friday night to mini golf and pizza, when it comes to Sports — well, let’s just say that the guy who only just learned, after three years, what to do with the ball — he maybe should be on a team of guys of “similar functioning levels” to him.
Knowing Nat, he will just go and play wherever he is sent. One more thing he has no control over, and yet one more thing he will most likely transition to with grace and smiles. I think it is exactly that which makes me feel that pierce of pain, which goes in through my throat and spreads into my belly. That right there is the disability: this passiveness, this inability to master your own fate, and the mute acceptance of what is done to you.
Maybe it bothers me more than it bothers him. This is also where I don’t know where I begin and where Nat begins. His disability binds him to me way beyond teenage rebellion years. I am told to let him go, but the fact is, he must always be somewhat attached to me, a thin, invisible umbilical cord that stretches across city borders and basketball courts.
The disability is also manifested by all the doors that close, heavily or quietly, in your face or over time. That preschool has no one-on one; time to find a special classroom. That classroom is academic, not vocational, but he can’t do academics anymore. Time is running out. He needs to learn pragmatics. No more history or science. Well, who needs that anyway…
Or — that team is inconveniently located, and besides, the kids are at a different level. Slam, move to the next doorway. Pick up the ball and run with it, run to where they will cheer. It’s not whether you win or lose, it’s how — or where — you play the game.
I now have the first two events scheduled for my Autism Mom’s Survival Guide book tour: Sat., April 3, 2pm, Gibson’s Book Store, Concord NH; and Sat. April 17, 2pm., Borders in Chestnut Hill, Mass. If you have a special needs/autism group that wants to sponsor an event with a bookstore near you, let me know and I’ll put you in touch with my publicist. This is usually how I do these things; an autism conference brings me out to wherever and partners with the local bookstore. (For Making Peace With Autism, I’ve been to Minnesota, Wisconsin, Wyoming, Toronto, Ohio, Pennsylvania, NJ, NYC, CT…) You can see the kinds of events I’ve had right here in my site.
At the Gibson’s event in New Hampshire, I will also have a special guest; here is his press info: “Matthew McNown, the author of the young adult fantasy book, DANAR, which came out in August. Matt is a unique 21 year old boy with autism living in Durham, NH. What is extraordinary about him is that, as someone on the autism spectrum, he has not only worked to conquer his grasp on this realm but has created a whole new one with the characters in his book.”
Also, if you have contributed to the book, I would be especially interested in having you stand with me during the book talk and participate in the discussion.