Developmental Dilemma: What To Keep

Part of me thinks that no one should ever have to outgrow Toy Story.

Part of me thinks that no one should ever have to outgrow Toy Story.

Ever since the 18th birthday earlier this spring, I’ve been in a state of emotional turmoil. It’s only a slight exaggeration. Now I try to make some sense of a teenager’s room that runs the gamut from Winnie-the-Pooh to Scooby Doo with everything in between. It’s a collector’s dream and a parent’s nightmare. I’ve learned the hard way that throwing the wrong thing out means I will be hounded eventually to replace it – it could be five weeks or 5 years from now, just long enough to make what cost me $1.99 in 2003 now cost $67.99 on Ebay today. I know parents who have purged their house of everything Thomas and Pixar to help their kids become adults but my problem is that I really am loath to replace Toy Story with the Man of Steel. To me, that’s just another kind of arrested development. More importantly, he’s not interested in that stuff – he sleeps soundly through superhero movies on a regular basis. He loves what he loves.

IMG_4800And the books. Which ones will he ever read? How can we know what will prove useful or interesting, just by waiting patiently for him to notice the ones placed where he sees them every day? To get rid of the easy readers seems mean, to get rid of the more advanced books seems pessimistic.

IMG_4804

Will he look beyond the action figures to the books behind them? Maybe.

Downstairs are the bins of paperwork that requires filing or tossing – one for school, one for insurance, one for general ASD stuff, one for transition, one for keepsakes and artwork that show developmental progress, or the lack thereof. But I only end up weeding things out I know are redundant – I just don’t know when a school or a court will need to see what we have and I’m afraid to get rid of something that could be a key piece of evidence of … I don’t know. And every bin or toys or papers brings a flood of memories and emotions that don’t want to stay on the shelf where I keep them. I am trying so hard to focus on the future that sifting through the past seems like a bad idea just now.

So I guess I’ll stick with The Wizard of Oz and The Sound of Music – at least they are live action – and wait a bit longer for the moment when we can at least move some stuff up to the attic. And we will know soon enough what schools, doctors, agencies and lawyers require and then, maybe then, we can let go of at least some of the past.

Remember Cats versus Dogs? They’re all in here.

The April 15 Post That Wasn’t

IMG_4098I was almost ready to publish a post on April 15. I just needed to load the fox photo. But I had an appointment, and on the way home the news on the radio changed everything. Bombs going off in my adopted city on a street I used to traverse every day. I’m still processing  the bombing and all that happened in the days after – me and millions of others. So, after today’s moment of silence I returned to the post I wrote on that day, a day that was already profound for me, even before 2:50pm.

A Different Kind of Marathon.

April 15. Boston Marathon Day. Tax Day. Halfway Point in Autism Acceptance Month.

SONY DSCI bailed on posting every day this month, obviously. Priorities change, and with so many people saying so many things about autism, if I am going to add to the noise it had better be worth it. But on this marathon day there is something to be said about the value of pacing yourself when facing the long haul of parenting. I’ve been following a thread online in which parents share their strategies for separating from their kids for personal time, shoring up their marriages, and finding ways to talk about things that aren’t autism (it’s harder than you think). That conversation follows a number of pieces I’ve read lately in the mainstream media where people without children feel the need to weigh in on the foibles of those who do have children. Too much time on your childless hands, Mr. Bruni? If people without kids are irked by people who talk about their kids a lot, imagine the pique in those who find themselves surrounded by the misplaced angst of parents struggling with sports team playing time or ivy league SAT requirements. And it’s not so much pique really as it is having absolutely nothing to add to such conversations. It makes a better listener and people watcher out of me, for sure, but as the years go by whatever skill I had for small talk sort of waxes and wanes with wherever we are with our boy. Sometimes it seems to have atrophied and I almost don’t trust myself at parent functions for my typical children anymore because the urge to say something truly inappropriate (but funny, I assure you) is almost overwhelming. It’s like the vegan invited to an event at a steakhouse – just because the parameters of your life are different you don’t get to ruin it for everyone else. If it bothers you that much, stay home, right? Wrong. Choose events wisely, but go, and bring your empathy with you.

***

So, I left writing this post to do work things and then I checked back on the parenting thread I was talking about, and was validated and educated by what I read there. People have made some hard choices to keep balance in their lives and create independence for their children. It made me think, and so I went and sat in the rare spring sun to contemplate the long-term plan. Out of nowhere (kind of) appeared the boy. He wrapped his arms around my head, kissed it and said, “Are you worried about something?” He wedged himself into the chair with me, leaned his head on my shoulder, and twirled the hair at the nape of my neck with his fingers the same way he did as a toddler. I couldn’t answer him. We heard a door open – saved by the Dad, taking a break from work. We scrambled upstairs and while I crossed the room to talk to Dad, the boy looked past us out the window and pointed (now he points!):

“Baby foxes!” He spotted them – four in all – scampering about, camouflaged almost perfectly against the oak and maple leaves. We would have been too preoccupied to notice, but we found ourselves checking in on them all day as they wrestled and napped, waiting for Mom to come back to the den that sits just up the hill from our house.

He feels ahead of me, he sees beyond us. We have a lot of thinking to do.

When they were handing out Christmas Spirit, he got in line twice

We volunteered to throw the class Christmas lunch at our house and found ourselves in major prep mode. The light snow that had been falling all day put us in just the right spirit. When walked into the supermarket they were playing a snappy version of Jingle Bells. Our boy started to bop a little as he walked in time to the music; I did, too. We bumped shoulders a little and headed toward the bakery, bopping together. I was lost in the moment, having fun.

“Hey there!” Busted, dancing in the store, by the mother of a classmate of my daughter – someone I know well enough to be a Facebook friend but not so well that I didn’t feel sheepish. I threw up my hands.

“Okay, you caught us dancing the supermarket! We are modeling good holiday behavior!” He was bopping off without me so I had to move on, but we left her smiling. When I caught up with him he was very busy at a table piled high with Christmas cookies.

“We have to move these cookies to allow the train to go through!” Among the piles of cookie boxes there was indeed a buried train setup. The cookies were encroaching on the tracks and had dislodged the train from its proper spot. He worked quickly and efficiently, keeping the cookies in neat piles but reorganizing them so they would not interfere with the train setup. He was the spitting image of his father in every wonderful way, so I took a picture to e-mail his traveling Dad and tell him how we’d been caught dancing.

IMG_2924

When I finished sending the mail on my phone I looked up and the teenager who works in the bakery was standing a few feet away, watching us in bewilderment. She had come out from behind the counter to watch us warily and I saw it dawn on her that he was doing a good job, and was improving on what I assumed to be her cookie arrangement.

IMG_2925

He finished up and surveyed his work with folded arms, pleased as punch.

“There! That’s better!” I looked at the girl.

“Is this okay?” I asked.

She nodded slowly, “Oh, yeah.”

And then he was off.

“C’mon Mom, we have to track down that sneaky pizza crust!”

If there is a future in holiday cookie displays, we are in great shape.

Taking Umbrage

I’ve had some brutal conversations recently, and one in particular yesterday left me speechless with indignation. Hard to believe, I know.

But I’m not speechless anymore.

I have been speaking with parents for many years, and in recent months the talk has turned, not surprisingly, to adult transitions for people with disabilities. It’s complicated. The kids are complicated and the system beyond the School District is complicated. There are multiple agencies that providing multiple, sometimes overlapping services. The eligibility criteria – now under revision by the Commonwealth – is maddening, placing undue weight on IQ scores. Kids with scores over 70 get far fewer supports (if any) after age 22 than kids with scores 70 and under. Just like getting typically developing kids into college, parents compare scores and experiences. That score, and how you access the social service system – through the Department of Developmental Services, the Department of Mental Health, Massachusetts Rehabilitation Commission and probably some agencies I don’t even know about yet – affects how we move through the system. We have learned that we can get conflicting answers on what to do and what is available from people working at the same agency. We knew it wouldn’t be easy.

What I did not expect is the juxtaposition of complacence and entitlement that emerged during these conversations. People tell me matter-of-factly that it is futile to negotiate and collaborate with the School District to better target support for a child but they follow it up with the expectation that, come age 22, the Commonwealth should be poised to provide full-time employment opportunities for the student emerging from the system. They are shocked to discover that this is not the case. While, in my experience, the Commonwealth makes no promises, they give the realistic expectation that students may have a chance for part-time work.  People with an IQ under 70 may be eligible for additional support though day programs and group homes, but those with an IQ over 70 will likely get nothing at all, regardless of their ability to access the potential indicated by the score. The difference in what the state provides is determined to some degree by how families access the system and advocate for their disabled young adult. I am only just starting to sift through this information, so don’t quote me on my facts just yet.

The barriers to employment for adults with autism is all over the news, partly because there are so many high functioning autistic people out there that people can see the untapped potential they could bring to the marketplace.  And yet I find myself yet again pushing back against the perception that an autism diagnosis presents some kind of unfair advantage in the school and social service system just because there happen to be so many people with autism coming of age at this point in history. And let’s be clear: they aren’t talking about people with IQs near 70. I find myself apologizing for the fact that my disabled child is the one slated to fall through the safety net because he is autistic – this is the conversation that sent me into orbit. The conversation in which the person whose child will get more support than mine feels cheated because my child is viewed as higher functioning when he is only differently disabled than hers. Is there such a thing as disability envy? Sometimes I think so. Contrary to popular belief, the autism label isn’t opening any doors for us; I’m pretty sure I can hear them closing.

There is no glory in needing or asking for help. There is no greater helplessness than knowing there are limits to what you can do for your disabled child, and knowing that you are going to have to go outside of your family to assure that they get what they need so that they will need you as little as possible as they – and you – get older. We do not want to let them go; sometimes just letting them go to school is tough enough. But one way of making this excruciating process bearable is trying to do things that help more children than just your own. I have said this part many times before: We have tried to advocate for our child with an eye toward building programs that help others like him but also toward building a school system that serves all children well.

But to hear from parents that the teachers are great but that nothing has ever really changed, that a child is not getting this or that even though it’s in the IEP but that’s just the way it is, that the high school is bad at this or the middle school isn’t addressing that, that the Commonwealth is a self-sustaining bureaucracy and nothing more and there’s nothing we can do about it – that just doesn’t match up with my reality.

Our School District has changed and is changing every day. My indignance comes from the sense that people are complaining about things that have been fixed, that our high school is better suited to serve our kids than it was 2 years ago and infinitely better than it was 5 years ago, that education is a partnership that requires communications and work inside and outside of school by all parties involved and that, most importantly, complaining is not the same as advocacy. Things are changing because parents are speaking up in ways that foster change – which doesn’t mean bitching over the phone or in the parking lot. It means calling a meeting when the District is not meeting the terms of the IEP, making sure the IEP addresses the needs of the child, and that the teachers and staff have the time and means to serve the child.

Here's something else we accomplished: we created and funded an Education Resource library for parents and teachers to research specific disabilities.

Here’s something else we accomplished: we created and funded an Education Resource library for parents and teachers to research specific disabilities.

I am driven to distraction by the perception that we can neither penetrate nor change the system and that the progress we have made in recent years in our own schools is invisible. People say to me with a straight face that it is a waste of time for them to try to change things in a school “because it won’t ever happen.” I know that  the improvements to the program that their child is in were not an accident that happened while I was advocating for my own child – I asked for change, lobbied for it, called meetings about it, talked to the School Committee about it, got funding for it. And when other issues were brought to my attention, I did the same thing for programs that my child was not in. There are a lot of us doing a lot of work out here and we can’t take sole credit for that progress but it galls me to discover that some people think that parents and citizens have not fueled and contributed to substantive change at our high and middle schools in the last five years. There is always more work to be done but this is a moment where I feel the need to stand back and appreciate what we have accomplished so far. Within the last few years we have increased all of these supports:

  • therapeutic classrooms
  • school adjustment counselors
  • assistive technology
  • transportation for community inclusion
  • after school opportunities
  • community-school employment partnerships
  • small-group instruction
  • language-based instruction
  • behavioral training and support

And we accomplished it not because my child is has a certain diagnosis but because I – and many parents like me – put in the time and energy to advocate for changes that would make our schools better not just for our kids but the kids who come after ours.

So many parents face bigger hurdles than I do – and some of their hurdles are in my future. They work harder and better to accomplish things I haven’t even dreamed of yet. Whatever work I have done pales in comparison to theirs. I know that we will benefit from their dedication, wisdom, persistence and tenacity and I don’t ever want to them to think I take their work for granted; I am finding out just how many people do.

Can Somebody Screen My Mail, Please?

I admit to having moments in which I am thin-skinned. This is one of them. Count it as one thing I am all too happy to miss, for any number of reasons. I know that there is continuing education in our future (where and for what and for how long is anyone’s guess at this point) and that  the college admissions process for typically developing kids is a nightmare. But still. Spare me.

post script

Just as I hit publish, the TV goes on and I hear the familiar strains of “If I Only Had a Brain.” Sense of humor, blessedly intact.

So, How Was Camp?

I wish there was a simple answer to this question.  Was it the right thing to do? Yes. Are we glad we did it? Yes. Did it result in miraculous, instantly recognizable changes? In some of us, yes, but how if affected our boy and how it influences our next moves to plan for his transition to adulthood I am still not prepared to say. We still need to assess his physical health with regard to his diet and digestive system not to mention the dislocated knee (which appears to be fine). We also need to benchmark his academic skills and assess   his social development.  The latter shows greater depth and fluidity, but I can see the potential for him to fall into old patterns with old friends. He seems generally more communicative and more cooperative, though we are still in the glad-to-be-back-home honeymoon period.

Those miraculous, instantly recognizable changes allude to those of us left to fend for ourselves, boyless, at home. My own angst has been clearly documented here, but it must also be said that for all of our hand-wringing the most surprising change was that things here did not change nearly as much as we expected. Special diets, elaborate toy tableaus and the occasional Gerald Mc Boing Boing sounds are not as disruptive to our lives as we may have thought. In our case, the burdens of autism are not nearly as heavy as we were lead to expect – when he was gone we felt more far more emptiness than relief. In earlier years we may have felt it more than we did at this point but I feel the need to point out that the camp experience was more about him being away from us for his benefit, not our need to be without him. Some people really do not understand that. And we do recognize necessity that our other children need to know that his independence as an adult is just as important to us as theirs, which is a point that absolutely must be made with both actions and words. In reality, the hardest part of the camp experiment is that it is so lovely to have him home that we are loathe to think about ever letting him go away again (for the record, he is also perfectly fine with that).

And there’s the rub. The urge to become complacent is, at this early moment, almost irresistible. But we must keep our eye the prize of independence, or whatever measure of it we can hope to achieve. He is vulnerable – we know now that he can endure a lot but we also know that he may be just removed enough cognitively that he might be forced to endure things that he should not. He was in an environment that we knew would not exploit his good nature – where else can we possibly find that outside of home?

So camp, in the end, did not give us as many answers as we might have hoped, but it is making us rethink our questions.

Day 21: Forbidden Fruit Out on the Table

And so begins another week, boyless.We are holding his place for him even as we try to take advantage of being able to do things that it doesn’t make sense to do when he’s home. You never know what you are going to miss, that’s for sure, and you never know what small temporary joys will pop up – like being able to leave a bowl of apples and peaches on the table. Other items are scattered around the kitchen that aren’t typically in plain sight – bananas, french rolls, hot dog buns, home made chocolate chip cookies. He loves them but should not eat them – they cause physically mild but emotionally distressing reactions – but if they are within reach he cannot consistently resist the temptation (kind of like me and chocolate). It almost seems disrespectful to have them laying around; like an open bar to an alcoholic. It’s not that big a deal but it is nice to have the food where I can see it – how many rotten apples, black bananas and moldy breads have I found in drawers, closets and cabinets over the years? I hide the food better from myself than from him much of the time. Often I just don’t buy what he shouldn’t eat but when others in the family request it I think it is important to respect their preferences, too.

The place holding is literal as well as figurative – his seat at the table is marked by two ceramic hearts he made last spring, professing his love of art and of us. I can’t predict how much he will have changed when he gets home, but I am certain that I will be different having gone so long without him. The hearts will prevail, though, that I know.