The Invisible Boy

The first time I saw Max was on a sunny fall day in DC. His mom Maya was a friend from book club and I was warning her that her husband, a Realtor, would be spending the afternoon showing us houses. Max was pulling on her hand, dragging her toward something. A store? A flower pot? A bicycle? I don’t know. He was a toddler then and chasing shiny objects is what toddlers do best.

I’ve seen Max many times since then. He came over for a playdate a few days before his official autism diagnosis. He was quieter than my son and more engaged in independent play, a fine motor child where my son was all gross motor. He seemed dreamy to me but he was verbal and ahead of my son on potty training. They were 2 then. Maya was concerned about speech delays but didn’t think an autism spectrum diagnosis was likely. I don’t think anyone would have. But then, what does autism even look like? They call it a spectrum for a reason.

After the diagnosis, Maya and Greg launched into a full frontal attack. Therapies, support groups, picking schools within the DC Public School system that were supposed to be best suited to bringing out the best of kids on the spectrum. They are his advocates, strong and unflinching.  You can see Max and some of the myriad therapies he gets here. His mom, a talented writer and photographer, detailed much of it in a way that makes clear so many things outsiders don’t understand about a family with a child on the spectrum.

Or you can watch this video, complied from clips of Max’s life that show something more ominous: Max is vanishing. Since that day when he was 2 and not yet called “autistic”, he has been walking a path deeper into his own mind, away from the people who love him. Maya talks about light leaving his eyes, words leaving his vocabulary. He is harder to reach, a slave to impulses he can’t control, unable to break away from his stims, unable to explain why he needs them. Maya and Greg fight for him. They fight and they fight and they fight.

They are fighting alone.

The DC Public school system promises a free and appropriate education to students. In theory, they have been providing Max with that kind of education within the public school system. He was in a classroom at a school that combined special needs with typical students for a year. It is a well-respected school but from early in his placement there, his teacher was telling the special education coordinator for the district and his IEP team that he needed more than she could provide. She recommended placement elsewhere for him – somewhere where he could get one-on-one teaching. His parents were not informed of this.  Meanwhile, their son was not progressing because the school failed to meet his needs. The school in fact, lost him. LOST HIM. They left him on the playground, asleep, and he wandered out a broken gate into a field adjacent to the school. They only found him because his father showed up and realized he was missing.

The next year he moved into an autism classroom taught by a woman with no special education training who was absent for medical reasons nearly 25% of the school year. A substitute later testified that the classroom was being “babysat” by paraeducators who once returned Max to Maya in soiled pants. Another time Greg arrived to find Max mindlessly humping a bean bag while the paraeducator read a book in the corner.

Maya and Greg hired a lawyer and made a case that the DC schools could not provide an appropriate education for Max and asked for tuition for him to attend a private school that could provide the education he needs. Max’s therapists and outside evaluators confirmed his needs. Teachers from his previous schools testified to the inappropriateness of the education he’s getting. It made no difference. DC refused. He has to stay in the system or Maya and Greg need to find a way to pay for private school, which they can’t afford.

The last time I saw Max was over the summer. He sat suspended above the floor in a rope climbing structure Maya and Greg installed in their living room for him. Something about sitting there with his arms and legs resting on the rope relaxes him and quells the constant stimulus seeking activity that keeps his parents on their toes lest he break something or hurt himself or steal food off a stranger’s plate in a restaurant. He didn’t speak while I was there. He had a faraway look in his eyes and I could feel the stress coming off Greg and Maya as they talked about him.

Apparently, the Mayor of DC is trying to reduce the number of special education students being placed in private school. It’s probably for budget reasons, not for reasons of leaps and bounds DC has made in improving special education services. Greg and Maya think that’s the reason Max was denied a private school placement despite the utter failure of the DCPS to help him even meet one of his IEP goals in his entire time in their system.  Not one goal. Not one.

Maya and Greg are seeking publicity now. They are trying to tear down the curtain so every can see the DCPS special education system and how it’s failing their boy and how they are denying him the kind of remedy they promise. They are trying to get meetings with DCPS leadership, they are contacting the press, they are enlisting the help of their neighborhood listserv, their Facebook networks, their friends and family to raise their voices in Max’s defense.  If you are so inclined, you can use this webform to send a letter to the DCPS is support of Max. You can also follow their story on the Facebook page they’ve created for him.

This story isn’t finished. I don’t know how it will end. I know how I want it to end. I want DC to relent and place Max in a school that can help him.I want my friends to get their boy back from the depths of his mind. I want Max to speak again.  I want him to stop being invisible.





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