Posts Tagged ‘residential educational placement’

“Jonah lives at a residential educational facility for kids with autism” is how I say it.

Innocent conversation-starter questions at networking events or out in this bad, bad world*So Jonah is 9?  Is he in 3rd or4th grade?

I almost always tell the truth, and it sounds like a carefully phrased script constructed to confuse with alliterative, technical-sounding words that hopefully distract the listener while I try to usher the conversation elsewhere. 

Jonah’s at a residential educational facility for kids with autism. 

I’m not trying to be politically correct here, though of course it must seem it.  It’s just that any alternative phrasing feels awful. “Jonah lives an hour and a half away from me, cared for by strangers I have no choice but to trust because his kind of autism comes with behaviors so severe it was unsafe for everybody to keep him at home.”

What else could I say?  “My son’s at a school for kids with autism,” I guess would be okay, but it lacks that alliterative technical-sounding distraction technique and, instead, seems to always invite more questions.

Luckily most folks then let me take us on to “so you went to school for marketing?”

And then, later, I allow myself to wonder what Jonah would be like if he were in 3rd or 4th grade, just a regular kid at a regular school.  Would he still love the water, and celery, and tight hugs and car rides?  Would he be good at different things?  Would we go places and do things together?  Bake and hike and play games?  I get the feeling I’m over-romanticizing regular kids.  You get what you get.  And everybody gets their share of shit.  It’s just sometimes I feel like mine’s smeared all over me.

There are times I don’t talk about because I’m ashamed of them, the times when I forget.  It used to be for a minute, then an hour, then a day.  What I forget is how bad it was, how scared I was all the time, what despair and dread we lived with day after day after God-awful day.   I forget, and then I feel relief, and I tell myself that Jonah is well taken care of and in the best possible place, with his father just 5 minutes away.

I forget, and I am relieved, and I am ashamed.

If I were a born-to-be-a-mother-mother, one of those special people some folks say I am, I’d have found a way to keep him home with me, protected and loved.  No matter what I had to do, no matter how expensive.  No matter if I had to get a second job to pay for a 24-hour personal aide, an autism service dog, a kick-ass nutritionist.  A behavior analyst – Harvard valedictorian, class of 1988.  Some Superdoc who will fix all his violent behavior.

Not everyone should have kids.  It shouldn’t be an expected order of things:  High school.  Then college.  Job.  Engagement.  Marriage.  Buy house.  Have 2.5 kids.  Work until you retire.  Wish you had something to do, wish you still felt important to the world.  I may not understand it fully but I feel it coming, all this being pushed off the planet by the next generation and the generation after that and the generation after that.  Everything starts to confuse you and technology feels exponentially rapid now.

So maybe I shouldn’t have had kids.  The truth is I just really, really wanted some unborn child to have Andy for his/her father.  Unfortunately I was also selfish enough not to realize it probably shouldn’t have been with someone like me.

I don’t mean to sound whiny or crazy.  UGH.  Should I post this mess?

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Yesterday Jonah required a “two-person takedown” at school. 

Whenever there is a “two-person takedown,” they are required to call a parent to explain what happened.  When my cell phone rings at work and I see their area code, my heart always jumps and then sinks, diving down into a numb place before I answer.  I don’t want to hear it.  I don’t want to know it.  I want to be ostrich-mom and I can’t, and I want to believe he doesn’t hurt anyone anymore, but he does.  Not nearly as often as before, they tell me, but I hate it just the same.  For me it is the worst aspect of his autism, by far. 

He was in music class, which I would imagine he’d love.  I don’t know what upset him but he became frenziedly violent.  He was removed from the music class and they attempted to bring him back to his regular classroom, but to no avail.  Hence “the two-person takedown.”

He breaks glasses and hits, scratches and tries to bite.  He fights dirty, no holds barred.  Then they calm him and he gets his proverbial shit together, but it is impossible to say for how long. 

The time bomb ticks.

People ask me how Jonah is doing.  A lot of people.  I appreciate it and their concern means so much to me, but more often than not I ask them to please read my blog.  I know that might sound insulting, or even mean, and I try to explain:  I can’t live this every hour of my life. 

If I tell the same story over and over again, I become depressed and anxious.  If I worry and perseverate on the craziness of it all, I can’t function.  So I set aside blocks of time to tell the tale through writing, which is easier, and better, and usually much more articulate anyway.  I apologize to the people who want to know about Jonah when I just don’t have it in me to talk about it, but I get the feeling they are hurt and insulted anyway.

I hate that I can’t hold my boo in my arms and rock him back and forth, singing to him and calming him.  But he is 9, not 2, and the whole point of the school is to increase independence and learning, so kids are not treated like babies just because their cognitive ability may be low.  I have to admit I would have continued to baby him had he not gone off to school.  I love him more than most people in my life know or understand.  But hearing about his anxiety, his meltdowns, his aggressions – it’s too much sometimes.  I don’t know what he understands and I don’t know what to do most times. 

I trust his teachers and caregivers to nurture and love him, but is that too much of an expectation?

The effect it has had on my mother, and on my relationship with my mother, is significant, to say the least.  Jonah is the only child of an only child, and to my mother he is the sun, moon, and sky.  He is her everything.  It makes me feel like I must compete with her to prove he is my world as well, but it’s so different for me.  For me, there is also deliverance from a life I couldn’t live anymore. 

I believe with my heart this is the best thing for my son. His best opportunity at independence – at freedom from whatever it is inside him causing him distress. At competency in life skills…at learning.  At life.  I assert this a lot in my blog posts, I know.  I have to.  I need it to be true.

But what if I’m wrong?

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For those of you who don’t read the Capital District Parent Pages, in which I write an article every month (even though it’s undoubtedly the “bummer” of the monthly magazine, surrounded by articles about harvest and hay rides and Halloween fun), here’s my October article.  I wrote it in early September; the deadline is the 10th of the month for the next month’s issue (which means I’m working on November’s article right now):

Normal is a Dryer Setting – October 2011

As I write this, Jonah’s been living at an educational residential facility for children with autism (what they used to call a “home”) for almost a month.  The day we dropped him off and drove away was perhaps more agonizing for us than it was for him.  At least that’s what everyone kept telling me.  At least that’s what I needed to believe.  The last glimpse of my boy’s shirt was the most difficult thing to see; the impulse to run after him was the most difficult thing to fight.

Of course we called that first night to ask how he was.  I wonder if the staff hides the worst of the news when they tell parents what happens after they drop off their child.  “He cried for a little while, but then he was fine,” they say, probably perceiving we don’t really want to know the details anyway.  We’ve played out the details in dozens of different scenarios since the day we found out he’d been admitted.

Honestly, the anticipation of Jonah’s leaving was by far the worst part for me.  The countdown.  Once he was there, I hoped he’d get more comfortable and acclimated every day.  He even talked to me on the phone the day after he’d been admitted; “I love you mommy,” he said. “I miss you.”  I could hear a care worker in the background prompting him, but it was so good to hear his sweet little voice that I just relished the words.  Jonah’s never been a phone kid and, at best, tolerates whatever you’re singing or telling him for maybe six seconds before handing off the receiver.  It’s not like he will hold a conversation anyway.  We’re just now celebrating the fact that he’s starting to say “yes” when he wants to answer in the affirmative instead of merely parroting back what you’re offering him. 

I miss him.  I remember his hugs and kisses, his scent.  I remember how his eyes lit up when he saw a train go by.  I remember chasing him down a path in the woods and letting him throw woodchips and tiny pebbles into the air. Gleeful Jonah.  Unable to bother anyone, and away from all the rules.

I have to remind myself of the bad things.  We couldn’t help him on our own.  He was going to hurt someone, or himself.  Bad.  He’d already kicked his leg through a glass window during a tantrum.  Scratched and bitten and bruised Andy and me, over and over.  Screamed in our ears.  Broke our glasses repeatedly.  Threw plates and spit soda, escaped from his car harness to attack us when either of us was driving alone with him.  Shoved my mom’s TV over, smashing it to pieces.   I have to remember.

Andy or I call every night to see how his day went, and for the first few days Jonah was unsettled, but now he seems to be getting on board with the routine of the place.  His caregivers seem like genuinely caring, invested individuals.  They say he eats very well, works puzzles, smashes clay around, and is fitting in at the house, where his room is blue and he has two windows overlooking the pretty grounds. 

 He likes to take long walks around the entire campus, they tell me, and he adores the playground.  They e-mailed me two pictures of him with big smiles.

He’s been swimming, of course, and has had only a few aggressions (and one dinner-throwing incident). 

So far I’ve been to visit him twice, and as heartbreaking as it is to leave him behind, it is wonderful to look forward to seeing him again the next time.  I trust we’ve done the best thing.  Not for us; for Jonah.  To give him the best chance for independence, growth, wellness, and learning. 

 And, most importantly, for happiness.

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When I was in the hospital, there was a man whose 15-year old son came to visit him.  The boy had down syndrome and I was introduced to him and the man’s wife and other family members as they all sat in the TV room.  The boy said hello to me when prompted, then sat quietly between his dad and mom, content to just visit calmly, his dad’s arm around him, his eyes taking in the different things in the room.  I made a small bit of conversation and then left them to be by themselves.

The next day Andy brought Jonah up to visit me.  I hadn’t seen my boy in a week and I missed him terribly.  Part of me knew the visit would likely be stressful for Jonah, but another part of me longed for the same kind of visit I’d seen with the boy the day before.  When they arrived, I smiled brightly and said “hi, boo!”  but Jonah just looked confused, turning back to his dad.  “Home?”  he asked.  I lured Jonah into another recreation/group room (where most of the unit was gathered) by offering him a soda I had in there.  He went right for the soda, took a sip, put it back down, and walked back out of the room before anyone could really even talk to him or say hello.  I know the experience was overwhelming for him and I knew intellectually not to take it personally, but then Jonah cried for “car ride” and “home” increasingly, until even though he’d only been there for 5 minutes or so, Andy said it was time to go.  I wanted to hug and kiss Jonah goodbye but he started to attack Andy.  Andy quickly handed me his visitor’s pass and pushed the door open.  I watched from the window in the door as Andy struggled with Jonah.  They swung around in the cold on the path to the parking lot and I broke down, sobbing at the door, watching them until they disappeared from sight.

The next day I was talking to the father of the boy with down syndrome, and I guiltily admitted to him that I was jealous – that I wish Jonah was like his boy.  “Why?” he asked me.  “Two reasons,” I answered.  “Down syndrome is an immediately identifiable disability, (whereas Jonah looks ‘normal’) so people are more likely to be compassionate when encountering him, and also because he is so sweet and good-natured, attending a regular school and doing well, learning as best he can, operating in a world that’s got down syndrome pretty much figured out, that knows what it is and what to do about it.”  The man nodded and smiled.  “He’s my buddy,” he said.

I miss that man, and everyone else in my unit at the hospital, terribly.  We were a group of people for whom it was unnecessary to explain anything but the details.  The underlying suffering was universal – we all felt it and we all shared it and it was the foundation of everything for us.  It was easy to connect, to feel close to one another.  One of the rules on the unit was that we were not allowed to touch one another, but we snuck hugs and cuddled into one another whenever we could get away with it, like a very functional family in a very dysfunctional world.

I thought the hospital would “fix” me – that on new meds and armed with new coping skills, I would do lots better – but I find myself wishing I could crawl back to the hospital with all those same people where we all understood one another.  The outside world doesn’t have the same dynamic – people don’t understand the tracks of my tears or why I can barely breathe – and I have no right to expect them to.

Jonah was so good for a few days over vacation that I was once again tricked into thinking maybe we don’t have to place him – that maybe we can manage him okay.  By we I mean Andy, mostly, for I am not at home anymore and though I try my best to see him and assist as best I can, I usually end up cleaning up the messes left behind from his attacks.  I visited for about 4 hours both Saturday and Sunday.  Saturday was good; I played with Jonah while Andy took a nap and got some much-needed rest.  But when I left Jonah attacked our sweet little aging cat, Sugarpuss, who didn’t even fight back, and Andy had to stop Jonah from choking her with her collar.

Sunday was worse.  Jonah picked up Sugarpuss by her skin and brought her into Andy’s room in the morning, and we quickly realized we needed to find another home for our poor cat.  Then I came over again to help out for a while.  Andy was making coffee while I was in the computer room paying bills online, when I heard Jonah say “hey daddy?” and then there was a ruckus, followed by Andy leading Jonah into this room and onto the bed, struggling to calm Jonah during yet another attack.  I went into the kitchen, where Jonah had yanked the half-filled coffeepot into the sink, yanking the cord out, spilling coffee and grounds all over the kitchen cabinets and scattering a huge mess across the floor.  Andy kept Jonah in his room for nearly an hour and it took almost that entire time for me to clean the disaster of the kitchen.  Andy was bitten and scratched and I was shaking, my heart pounding, my panic rising.  How much longer can we do this?

We tried to prepare Jonah for the return to school the next day.  He had a horrible day at school, seemed disoriented and confused, and while he was in the “safe room” he pooped and smeared it all over himself and the walls, something he’s never done before.  (Actually, he has been doing very well with pooping on the potty at home).  The note home from school tried to euphemize the day somewhat, but Andy and I both know the deal.  Yesterday he attacked the bus aide and Andy several times, and Andy’s nerves are shot. Andy brought Sugarpuss to my mom’s house, where we hope she will be safe and do okay with my mom’s other, male, much-younger cat.

My nerves are shot too.  The nurse at school called yesterday because Jonah’s left eye (the bad one) was all red and puffy.  Andy gave him Benadryl and is waiting to hear back from one of the doctor’s he’d called, the developmental pediatrician or the eye specialist.  I guess Jonah’s eye is a little better this morning but neither of us have illusions of hope anymore when it comes to anything at all.

It’s like a giant wrecking ball has come down upon us to usher in 2011.  I don’t want to get out of bed and I don’t want to go to work and I don’t want to tour the residential schools and I don’t want to talk to anyone and once again I am barely functioning.  I have no idea how Andy is doing what he is doing and I thank God he has the strength.

I survive on medication and deep breathing and very little food (I’m not hungry at all).   I cling to other people’s prayers because I can’t pray anymore.  I sleep as much as I can and when I get home from work I do suduko puzzles, and I make necklaces with beads, and I curl into myself and rock like a child, self-soothing, trying to empty my mind, trying to stop my ridiculously useless tears, wishing I were anywhere but now.

Wishing the wrecking ball would just crush me already and put an end to all this fucking pain.

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The word itself sounds crisp and almost pretty, a deliberate and careful motion to put something in a certain spot.  I love words but I don’t like this one, despite its euphemistic connotation in the context of educating Jonah in a residential setting somewhere.  Somewhere else.  Somewhere Andy and I won’t be.  And today is the dreaded meeting to decide about it.

He was doing so much better on the new dosage of meds, and then yesterday at school he fell apart again.  Five attacks, lots of time on the scooter platform with his weighted blanket.  It’s the worst timing there could be, for the teachers in his class will weigh in heavily on what to do here, and if he is getting such a low quality of education now that they’re simply managing his behaviors, I can understand a move toward residential education.  Understand, but only intellectually.  In my heart this is all unthinkable.  An unimaginable move.

I harbor resentment for all the normalcy other children get to have, what with arguments over homework and setting the dinner table and who pushed who, all the while excitedly counting down the days til’ Christmas…and then I squelch the resentment by reminding myself that there really is no such thing as normalcy:  normal is a dryer setting, I declare here after all, and pain and joy and suffering and hope and anguish are everywhere.  

I feel guilt too, for what could I have done differently to change what has happened?  What should and could I be doing now to effect a difference, in our lives, at Wildwood School like the parent volunteers, in the community, to advocate for better care and treatment of individuals with autism and other disabilities?

There are so many things I don’t know.  So much over which I have no control.   So much helplessness.  What is going on in our boy’s heart?  In his body, his brain?  What does he wish he could tell us?

Are you in pain, sweet little boo?  Are you frustrated because you want to speak volumes you cannot express?

Can I love the pain out of you?  Hug the frustration away?

 He lies on the table with his markers lined up next to him.  He is looking out of the window with his little butt in the air, dressed in comfortable sweats, asking for grandma.  His dependence and innocence are complete.

Fifty years ago he may have been hidden away in a back room somewhere.  A few hundred years ago he may have been labeled “possessed” and burned at the stake.

Today he will be the focus of people who love him, who will work together to get him the best care and education possible. 

But I’m really scared anyway.

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