I took this photo in the parking lot of the Lurie Center in Lexington, Massachusetts, a branch of Massachusetts General Hospital that serves children and adults on the Autism Spectrum. These are iconic fries, a not-so-secret symbol of what it often takes to get an ASD kid to and through a doctor’s appointment; I can only imagine the tears spilled when they hit the pavement. The clinicians at the Lurie Center are among the best in the world and yet even the skilled and gentle support they offer can’t always extend out into the parking lot where worried parents and anxious kids struggle – sometimes mightily – to fit yet another specialist appointment into their lives.
But with this photo I see and offer up hope that persistence pays off. Not always, not when we want it to, but it is hard for me to adequately convey my joy at seeing these fries and knowing that they were not going to cause me the meltdown we once might have had just seeing them ice cold on the ground. My boy looked at them and remarked, “Someone’s been to McDonald’s!” and then danced – literally, with iPod – toward the entrance. Next to the door there is a wisely placed trash can, which he glanced into and noted, a little somber now, “There’s the box.” Some part of him knew and felt the pain of the child whose fries had met the wrong fate.
It was a lively day in the waiting room, with several families with antsy children waiting to be greeted by doctors and therapists. We recognized one clinician as she came out to greet a child. We knew her from work we did as part of a research group a few years ago, and she delighted at seeing our boy. He spoke politely with her and then began to tease me about what he wanted from me in exchange for being brave about having his blood drawn (more research – that’s another post – and the covet du jour was yet another Scooby Doo movie) that day. I saw her look at him, and at me and as she listened to us negotiate I saw on her face a measure of disbelief that this could be the same boy she knew in 2009. She looked at me and lowered her voice and said, “Do you know how lucky you are?” And even though I said yes, later I had to stop and take stock of how far we have come from our french fries in the parking lot days. Our challenging times are by no means gone but they are different, and it is best not to dwell on what they are like now – they will return soon enough.
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.
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.
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.
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.
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.
I really don’t mean to be flip, but at least military veterans suffering from Post Traumatic Stress Disorder (PTSD) don’t have to worry that they will open their front door and find themselves back in Iraq or Afghanistan. I don’t doubt that sometimes they imagine this is true, but it blessedly is not. Studies have shown that parents of children with autism sometimes suffer from PTSD and part of that, I am certain, is that we do indeed find ourselves right back in battles we thought we fought and won years ago. When I open a door – bathroom, bedroom, car, store, or school – I can tell you for sure I don’t know what I will encounter. About 90% of the time all that greets me is sweetness and light, but that other 10% is a real killer. The the invasion is invisible until the collateral damage is done, my boy the innocent victim of a war inside his body and brain.
And it isn’t just a child’s distress that triggers the trauma. Doctors, teachers, social workers – they can suddenly bail on us and make us think that we are crazy. They only half listen to the data, so convinced are they that none of a child’s previous experience is valid as we relive these moments and seek help to solve the problem yet again. Condescension has no expiration date.
So without going into graphic detail, my boy has digestive issues that defy simple explanation but his inexplicably weak immune system leaves him vulnerable to invaders of all kinds. He easily avoids the common cold but his gut manages to attract all sorts of problems. The process of obtaining the necessary samples was what triggered the PTSD for me (but not for him, thankfully) – suffice to say that I had multi-sensory proof that there was something in my son that did not belong there.
We have learned over the years that he does not feel or react to pain in the same way the rest of us do – in 2007, he did not feel the pain of appendicitis until it was nearly too late. So when he came to me a few weeks ago and said his stomach was killing him, we knew it was trouble. He was already on more than one medication to ease digestive discomfort that was diagnosed through tests him telling us he was in pain. Photos showed his stomach muscles tied up in knots, even when it was empty. Feeling we could not wait to track down his specialist, we went to the pediatrician, who ordered tests.
When the pediatrician’s office returned my call about test results I was told – by an MD who was not our regular pediatrician – that there was indeed something amiss and that it was treatable but that she was “reluctant to treat it because it is asymptomatic in most people.” Even though the other tests came back fine (whew) and my son who does not feel pain was walking bent over from pain, she determined that it was “risky” to treat it. I said that given his immunodeficiency it was my view that it should be treated, but that I would consult the specialist and she agreed that when I got clearance from him she would write the prescription. I looked up the offender found in his sample on WebMD and even this cursory set of clicks told me that 80% of the people who encounter it suffer from abdominal pain. Asymptomatic in most people … or maybe not.
Lucky for us, the following day that we had a routine neurology appointment at the Lurie Center, a Massachusetts General Hospital-affiliated practice which specializes in serving families with developmental disabilities, and autism in particular. Our gastroenterologist is based there also, so I knew I would at least be able to speak with his nurse. I asked the pediatrician’s office to send our test results there ahead of us. During the drive to the Center my cell phone rang. It was our regular pediatrician calling to confirm that I had heard the test results and to say that they had faxed them to the Lurie Center. I preface this exchange with the fact that we really do love our pediatrician, who, in the past, has been collaborative with us as we navigated our son’s health maze.
He told me, “We really would prefer that you have the Lurie Center write this prescription because, well, it’s very controversial.”
“I think it is a good idea to consult them but I don’t understand why it is controversial to treat the only thing that the tests found wrong with him, especially knowing that he is vulnerable to such things,” I noted.
“Well, we would really prefer that they handle it.”
“I’ll let you know what they say. Thank you for sending the test results.” I hung up, confused and angry. I spent the rest of the drive wondering what I would have done if I didn’t have a team of specialists 30 minutes from our house.
In the context of the neurology appointment, I explained our dilemma and we went over the test results. This wonderful doctor typed up the whole story as we talked, took the test results, and said she would track down our gastroenterologist, who, it should be noted, is so in demand that he is nearly impossible to find on short notice. The man – so delightful in every way, a joy to work with – is a whirling dervish. But the intrepid neurologist returned a mere ten minutes later with marching orders.
“How did you find him so fast?” I asked.
She smiled at me over her half glasses, “It took three hospitals. I never give up. It’s a good thing I did find him. He says to treat immediately because this is known to trigger colitis and once it does it can’t really be reversed.” She called in the prescription for the same medication the pediatrician’s office had demurred on.
Within 48 hours, the pain was gone. Still, based on what I see now I can’t be sure we avoided the colitis, but we’ll have to wait until the treatment is complete.
I have many stories like this one, and I have been reluctant to tell them because they involve arguments with doctors, whom people want to trust, and my winning the argument, which sounds smug and self congratulatory. Also, most of them happened years ago and I didn’t really want to relive those chapters in our lives. I shared our story with Dr. Martha Herbert for her book, The Autism Revolution and told myself that I was done. But here it is, 2012, and we’re living it again. We are still fighting the same battles inside and outside my son’s body. I had begun to think that mainstream medicine was catching up with us, taking the journey with us and developing an understanding of how complicated autism can be. But here we had symptoms, conducted tests and an identified a pathogen and treating it was still considered controversial because my child is autistic. This isn’t even the full story but suffice to say that I shudder to think what might have happened if we had not had a team of specialists (that took me ten years to build, one doctor at a time) to back us up and get to the problem and treat it quickly.
And when the dust settles we will need to rethink the future and life plans in light of the reality that he may never truly be healthy enough to be as independent and high functioning as we know he can be when he feels good.
The Bill Cosby Breakfast
Meanwhile, the rest of my family had not lost their appetite the way I did and were, understandably, interested in eating. By that Friday we were pretty much out of food for breakfast – no bread, no cereal, no time for eggs. My younger boy usually eats whole wheat bread toast with Nutella on it. A quick read of the Nutella label reveals that aside from containing nominal protein it is mostly sugar. I remembered the Bill Cosby routine from the 1980s where he gave his kids chocolate cake for breakfast because it has milk and eggs in it and decided to roll with his logic. I served French Vanilla ice cream for breakfast. Given all of the detailed explaining he had to witness as we helped his brother, it seemed like the least, and most, I could do.
So. It’s a picture perfect autumn day and we are listening to Terry Gross on Fresh Air talk with Michael Feinstein describing his new book/cd about Ira Gershwin. Great program. They play a clip of a radio show in 1933 with Rudy Vallee and George Gershwin chatting with a little piano playing, followed a little later by a second clip of Ethel Merman singing “I Got Rhythm.” Our boy has been next to me in the car the entire time, tapping away on his iPod and soaking up the October sun; it’s been a long day of doctor’s appointments. The Merman recording, Feinstein explains, is from a tribute to George Gershwin that took place just after his death from a brain rumor at age 38. As Merman approaches the bridge in the song – “Who could ask for anything more?” – the boy turns to me and asks,
“Was this right before the Wizard of Oz?”
“I think so!” I reply, but when I get home I look it up because I wasn’t listening that closely. He was right. It was 1937. Oz was released in 1939. The Fresh Air broadcast made no reference to that film or its music but only (and ever so tangentially) to the composers who wrote some of the songs for it – Harold Arlen and Yip Harburg. The only other clues to the era might have been the melodies themselves and the accents – the Brooklyn/Boston/vaudeville kind of patter – both Gershwin and Vallee have voices that sound very much like Ray Bolger, who played the Scarecrow in Oz.
How is it – how is it – that some one who is not supposed to be adept at inferring anything can infer himself right back to 1937 at the sound of a radio broadcast and a familiar accent? Auditory processing deficit? Not today. Fear of music? Not today. Trouble making connections? Not today – at least not at this moment.
During the course of this busy day I jotted down at least a half-dozen moments that are worth writing about, but this is the stunner because it reminds me for the umpteenth time that , in our lives, autism creates so many more opportunities than we give it credit for. They are random, yes, and we don’t always know what to do with them, but they’re there, waiting to be noticed, valued and put into context. It’s kind of like a treasure hunt, every day.
Who could ask for anything more?
The lesson learned every day? That we don’t take the blame for what goes wrong and we can’t take credit for what goes right. We tried to accept a long time ago that most of what happens in life is out of our hands – and yet…years of data collection and analysis have forced us to look at evidence and then try to predict outcomes. We are compelled to try and control whatever is within our grasp, no matter how slippery.
So now we have this explosion of language and introspection and creativity and we cannot resist the urge to ask, “Did we do something to make this happen?” Maybe. Somewhere out of the many new situations that life gave our boy, a window opened, a breeze blew through and the seeds of success landed and took root. We created some of the circumstances (camp) and others decidedly not (the loss of JM) but at this moment we see a sense of strengthening purpose and engagement and the hope it brings leaves us blinking in the sunlight.
We know it might not last in its current state – I don’t think we will ever be free from regression. And we all regress sometimes, learning from those same mistakes again and again (Why did I eat that? Why did I say that? Why did I drink so much of that?). But when fundamental skills – like speaking in paragraphs instead of phrases – ebb and flow we find we will do anything to keep that window open and the breezes flowing knowing full well we could wake up one morning to find it closed. The prospect of losing something so hard won triggers every possible human response: hope, fear, optimism, cynicism, love, faith, superstition, luck, magic, and faith – all tempered by what can only be called PTSD. The shock and awe of those early years can return in an instant when he looks at me and his eyes are blank and he is seeing only what is inside his head.
But thinking about it now won’t make it happen – and it won’t fix it when it does – so I will be thankful for the gifts we have today and have faith that they will still be there when we wake up tomorrow.
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.
Damn the communication disorder. We agreed on early morning phone calls because we wanted the call to be as far away from bedtime as possible to avoid homesickness, which is more likely to strike at the end of the day. But now he comes to the telephone sleepy and hungry, ready for breakfast instead of conversation. Sweet and groggy, he gives maddeningly short answers.
What’s your favorite thing? “Evening swim.”
How’s the food? “Good!”
Are you having fun? “Yeah.”
What do you think of camp? “Awesome!”
I know these are good and encouraging answers, but I want details. Reassurances. Stories. Questions about how things are at home. I remind myself that I, too, am monosyllabic at 8am. More importantly, this isn’t any different from the conversations we have over the phone when he is here. I know that he is looking at his counselor as he speaks, waiting for prompts, and that the short answers mean that he is not getting prompts because they know I will hear it if they model answers for him. I also know that if he really wanted something, he would tell me. All of that is good, but at the halfway point of a 7 week separation I can’t help but want more. I am being unreasonable.
So the voice, with a trace of sleep in it and a smile behind it that I can detect, will have to suffice. And I blog about because as I write it down it gets more encouraging in the retelling.
What are doing today? “Having breakfast.”
What’s for breakfast? “I have no idea.”
What do you want for breakfast? “Pancakes.”
What do you think of camp? “I’ve been here a lot of weeks!”
Is that okay? “Yeah!”
We are coming to see you on family day! “Good!”
We will all give lots of hugs. “Yeah.” <heavy sigh>
We love you and are so proud of you. “I love you, too!”
We can’t really ask for more than that.
But a letter would be nice…
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.