School, Redux.

So when things started to go south a few years ago with Coleman in school, when he became hyper-rigid, when his behaviors began to escalate, and when he was ‘suspended’ from his k-2 program for several days until they could figure out how to handle him , we started to consider if it was time for a change for Coleman.  We assembled an outside team, consulted with doctors, and had Coleman’s neuro psyche evaluation done, the first and only re-evaluation we had done since he was diagnosed with Autism almost five years prior.

Aside from learning over again about Coleman’s significant deficits, we learned more about the type of program that we were told Coleman would benefit from.  They strongly suggested a strong ABA-based program with a low staff/student ratio, with discreet trial teaching.  The program should be flexible to enable opportunities to generalize skills he learns at the desk into a broader environment.  But in addition to explaining the type of program that was ‘right’ for Coleman, we also sensed a strong level of disappointment from our team of doctors and advisors about the lack of services Coleman had received.  The theme penetrated our feedback session, with several discussions and commentary about what SHOULD have happened.  I couldn’t help but feel partly responsible.  I should have pushed for more services.  I should have pushed for different services.  I should have worked harder with him.  Oh the list could go on and on.  But as you all know, Coleman’s battle with Leukemia in the years prior left me protective and really, all that stuff seemed so unnecessary at the time.  I just wanted my little guy to have a break. But after the doctor's comments, I found myself wondering What Might Have Been.

So as we began to figure out a suitable education setting for Coleman, I tried hard to not think about the past, and instead focus on the future.    We sought out programs that fit the doctors’ recommendations.   And when we found the right place, I knew it.  Soon enough, I found myself getting hopeful.  I started to think again about Coleman’s future.  I started to think about what he was capable of achieving.  And I started to get excited.  With the right program, I told myself, things will be different. 

I remember telling my mother “This isn’t forever.  This will be for a year or two.  Then he’ll catch up and we can bring him back to the middle school.”  She just smiled.  “That would be nice” she said.   I could sense her doubt.  “One day at a time” she said.  But she was too late with her warning.  I had already skipped straight past doubt, and landed head-on in Unrealistic Optimism.  My mind started to hyper-focus on catching up, and somewhere between “the kind of program he should have had” and “the kind of program he will have”, I managed to arrive at full recovery.  With all that ‘right’ programming that he would now be getting all day, well, surely my brilliant little man will snap right out of autism and land squarely in the land of typical ten year olds.  I could almost see him playing baseball.  I could feel it.  It was close. 

And so we began at the new school.  They offer clinics monthly to come in and view your child’s progress.  Our first few clinics were initially reviewing videos of Coleman during his day at school - he was not yet at a place where he would have cooperated with me in the room.  But soon, he was ready and I would spend a couple of hours watching him go through his programs.  It was heavenly to see him so happy, so adjusted – it was a satisfying redemption after the first awful few months of school.  He quickly answered some of the questions his teacher asked, but stumbled over others.  And as I watched him struggle with some of the same things he’d struggled with in the past, ‘more time’ is what I thought.  He needs more time.   

Until one day, a year and a half into his new program, I found myself walking into another clinic meeting.  At this point, he’s doing really well in school – all reports are perfect.  He’s happy and adjusted.  No behavior problems.  I observed him for almost two hours.   His teacher starts with some safety information.  She asks him his name.  He answers correctly.  She asks him his Dad’s name.  “Coleman” he responds.  She asks again.  “Bill” he answers correctly and earns his token.  “Where do you live?” she asks.  “Nashoba” he answers.  “Where do you live?” she asks again.  But Coleman is staring away, not listening.  She removes a token.  “Where do you live?”  Coleman scripts a few lines from one of his favorite shows and then looks at me.  He smiles.  He has a beautiful smile.  “Coleman, where do you live?” she asks him again.  “Hingham” he answers, still smiling at me.  And he earns his token back again.  They go through several different programs he’s working on.  She lays out a group of six small pictures.  “Coleman, can you give me the three pictures of food?”  He looks at them all, but doesn’t respond.  She asks again.   He looks over the pictures and eventually picks up three pictures.  “Great job!” she tells him and then asks him what the foods are.  He stares for a minute or two, and then says “food.”  She pushes him for the names of the food, but he can’t come up with oranges, cereal, or goldfish crackers.  They go through some sight words too.  I know he can read most of these but he is staring off again.  “Coleman, give me the word ‘my’.”  He picks up the flash card with the word “my” on it and hands it to her.  She asks for another but now he is back to scripting.  He has hand in front of his face like he’s talking into a walkie talkie and recites a full three minutes of The Backyardigans.   For his breaks, he takes me to the library and then the gym.  He laughs as he pushes the scooter from one end to the other.  We head back to the desk for more work.  His performance is, at best, inconsistent.  

I thank his teacher and team leader for the meeting and walk to my car.  I drive the entire way home in silence thinking.  And thinking.   Later that night, I sit with Coleman at the small table in the playroom.  “Coleman, where do you live buddy?  I ask.  “Coleman” he says.  “No, where do you LIVE?” I ask again, emphasizing ‘live’.  He smiles his beautiful smile at me.   I ask him again, “Where do you live?” “Fennelly” he answers.  I stare at him for a few seconds.  I start the answer for him.  “I live in…” and I wait.  He smiles at me again.  “Hingham” he finishes.  

  

In bed that night, I think over and over about Coleman.  And I have myself a nice little cry.  It's the same one I’ve had many times before when I realize things are not going to work out for Coleman quite the way I had hoped.  But it’s all ok because living with autism means constantly reassessing and re-setting priorities.  It means learning how to cope with the sadness and figuring out how to turn it into something meaningful.  So these little cry sessions of mine are not in vain.   

I realized that day that not all programs work for all kids.  And everything that those doctors had said about what Coleman missed by not being on the ‘right’ program was maybe only part of the story.  Sure, maybe a different program might have helped some.  But Coleman is who he is, and there is no program – not even ‘the right one’ - that will make Coleman ‘not autistic’.  The ‘right’ program I know now will capitalize on your child’s strengths, and find ways to work in spite of his weaknesses because not all weaknesses will be overcome.  The ‘right’ program will focus not just on gaining skills, but having fun too, because even the least functioning of kids needs to find joy in his day.  The ‘right’ program will keep your child safe, and will love him too, because it’s about more than just a day at school.  For kids like Coleman, it’s about learning to live with Autism, not without it. 

Coleman’s in the right program.  It was me that needed some adjusting.  

When You Know

When You Know

A friend confided in me recently about her concerns over her brother’s son.  She was trying to not be intrusive, but every time she saw him she felt like something was just off.  My friend has kids of her own, so she has seen typical development and felt like her nephew wasn’t hitting milestones as he should.  He wasn’t responding to his name, wasn’t playing like most babies do, wasn’t interested in crawling.  She was concerned, and wanted to say something to her brother.  “What should I say?” she asked.  I wasn’t sure, but the entire conversation brought a flood of my own memories. 

Billy and I had taken the girls to Florida and Coleman had stayed with my family.  When we returned less than a week later, the things I had been noticing slowly over the prior months now seemed blatant.  For quite some time, I had noticed that he didn’t seem to respond when I called his name.  He’s just very focused on what he’s doing, I reasoned.   And then I observed his lack of interest in other kids.  He’s independent, I silently cheered.  And then I noticed that he wanted to watch just a tiny section of a single show, over and over again.  And then, that he seemed unmotivated to crawl around and explore.  Even amid a pile of toys.  He’s a thinker, I told myself.  He’s going to be brilliant someday.    And then I noticed how much he perseverated on that one toy.  Every child has a favorite toy, I told myself.  But then I quietly noticed that even with his favorite toy, he was fascinated only with spinning the wheels.  And that, in fact, he liked to watch a lot of things spin.  And that he liked to line things up.  Lots of things. 

It takes a lot, really, to get you to say it out loud the first time:  “Do you think this is normal?”   And then you are defiant and defensive when whomever you have asked says it is not.   “What do you mean?  You just don’t see him enough” you practically yell back.  You spit back to them every rationale, every stretch of a reason you’ve been telling yourself over the past year to explain his behavior.  Your face is red and hot and you are irrationally angry.  Your friend politely tries to back off, but it’s too late, it’s already out there.  The brief conversation ends.   But later that night, when you are alone with your boy, you watch him more closely, willing him to do something that looks ‘normal’.  You lean over to him, and whisper  “Say Mommy, buddy. Say mama.”  But he just stares at you.  “Hey, pal, look at this ball!  It’s so fun to roll like this!!” and you roll it toward him but he just watches it roll and looks away.  And you pick up his favorite toy train and run it along the floor, saying “Chooo chooo!!!   See the train racing by!” and you hand him the train saying “You try it!” and he takes the train but turns it over and spins the wheels with his thumb.  And you know. 

Be gentle with your family and friends when you suspect their child is delayed or having trouble.  Because even when you know, it’s really hard to hear.    And having it confirmed by a formal diagnosis is no picnic either.  Worse still are the days and weeks that follow a diagnosis, because there is so little support medically, that once the news settles in, you are struck by a desperate feeling of having no idea what the hell to do.  And here, I think, is where traditional medicine begins to fail us.       

There is no standard treatment path in place that guides you along this vast, complicated land of Autism.  There is no annual appointment, no at-home follow-up, no clinic follow-up, not even a phone-call follow up.  At your feedback session after the initial testing, you are told gently that your child has Autism.  You are urged to seek an educational program for your child based on ABA (Applied Behavior Analysis) with a substantially separate class.  And that is all.  It is a rather brief meeting.  Basically a pat on the back, tough luck Chuck, and you are on your way.  Autism is a life-long, debilitating illness with multiple biological and neurological comorbidities.  And you are given a 15 minute conversation about it and that is it.  It’s no wonder parents are nearly suffocating under the weight of trying to raise an autistic child.  No one knows what the hell to do.  The parting words “get in an ABA program” are their only hope.  So that’s where most people start.  It’s also where most people end.  It would have been the end for us too, I think, if I hadn’t read this one simple book.  But I did, and that one simple book started a pretty big revolution over here.