Schoolcamp (First day, evening)

Alex needs this move. Living more on his own, learning beyond just 3 in the afternoon. College. “Alex, want to go to college, want to go to school camp?”

I remove his iPad headphones. “Alex, do you want to go to college?”

“College.”

“Hold that thought, Alex.”

Telling Ned over the phone was a mistake. He sends me a text. “Tell my coach I won’t be at football practice this afternoon.” Ned would never miss football practice. I call him. “How are you, Ned?”

“Kind of sad and kind of happy,” he says.

The school emails. “Please see attached (includes packing list!) We will need the CRP approval and an amended IEP before the admission can occur. I will send out the SD letter but following up on the CRP is most important!” The CRP, near as I can tell, is the document that turns on the tap of state money for Alex’s new education.

Jill emails. “I emailed her … to let her know about our email from the school and they say that we don't have to do anything else at the moment (though I'll certanily [sic] let you know within a day or so if we don't hear back in which case we might well ask for your help - and thanks)” I wonder who Jill was writing to?

Just before dinner, Ned sits on our bed and hangs his head. “It’s quiet around here when Alex is gone,” he says, unable to even start his normal night’s two hours of homework.

Yes, yes it is quiet. In a few nights, Alex won’t be in his bed at 10. He’ll live somewhere else for the first time in almost 16 years in my life and for the first time in Ned’s. How’s a family supposed to handle this?

“Maybe with the school it’ll be the same way when people show up for jury duty,” I say to Ned. “There’s people there to help jurors settle in to the process. To the jurors, it’s just once or twice in their life. But the people there see thousands of jurors every month. It’s nothing they haven’t seen before.” Ned nods. I hope it’s like that.

Sad and happy. Alex needs this. “School-camp?” Alex says. “College?”   

What about food? What happens up there when he runs out of Utz Extra-Dark Specials or Hebrew Nationals? In some ways what Alex faces is a thousand times harder than Ned’s new high school, which is one of the toughest in New York.

Speaking of toughest, in the mail comes a recall notice for our car. Something about the engine catching fire. It’s a week for stuff that has never happened to me before; I respond with predictable language.

“This is the last week Alex will be with us for a while,” says Jill. “Let’s all talk nice.”

Okay okay. Just before sleep I tell Jill I’ll come up with our punch list in the morning.

 

Schoolcamp (First Day)

(For two years we've tried to get my autistic teenage son Alex into a residential school. He has always lived at home with us. The school we wanted was very selective and its waiting time long. We always knew the message could come at any day -- and we suspected that when it did we'd have little time to make it happen.)

I'm on jury duty – just a frigging once-every-72-months event – and all set up with my stack of old Fine-Scale Modelers and the first judge of the day is minutes from needing 100 of us to begin selection on a case when I get the text from Jill:

“School just emailed w anticipated opening for alex for next Monday. Things could change obviously.”

Obviously. We’ve spent almost two years shooting for this residential school, which has a great reputation. Like most things with a great rep in the New York City area, it’s also selective. We have seven days to get Alex ready.

Before we prepare Alex, I must prepare the justice system of New York City. Already registered for my duty along with some 150 others in this big-box room in the NYC Supreme Court building, I approach the lady behind the desk.

I usually don’t do things like this. Often I’ve put my family behind other obligations. Not now. It’s been almost two frigging years. The lady looks at me with sleepy eyes. “I’ve had an emergency family obligation come up this morning that will likely mean I can’t serve jury duty right now. Should I go right now to the County Clerk’s office?” Want to hear the entire story, starting with the neonatal ICU 16 years ago?

“I’ll have to pull you out of the system,” she says.

I soon phone Jill. “Meet in an hour outside your office for lunch,” I tell her with Kirk-like decision. An hour allows me time to wander the sidewalks (still a little lost in the Kirk fantasy) and try to sort out the suddenly bubbling questions.

Will he have a roommate? Can he take the iPad? He breaks headphones weekly. We’ll have to send him headphones. Who will help him open boxes mailed from us? What about his battalions of plastic animals? How many pairs of pants does Alex even have?

What do we tell Alex to, let’s be honest, trick him into even getting in the car to drive up there?

“Let’s tell him it’s a week at school,” Jill says over lunch.

“Let’s call it ‘school-camp,’” I say. She nods.

“The next 48 hours should see quite a few developments,” Jill says.

What about his after-school program and weekend winter camp that I scurried so to set up with faxes, emails and calls? Who’s going to teach him to shave? He needs his own electric razor. How much are they? How much shampoo do we send? I don’t go to the office that afternoon. The day that started in a jury waiting room peters out around 4 with me almost staggering in the hourless dusk of a day off the track. All I want by then is my family all together.

Then there’s Ned. Ned got himself into one of the academically toughest high schools in New York. By the time he gets home from football practice every night, Ned must shoehorn homework into the hour or two before bed. We thought Alex might be a school before Ned’s semester began. Now we wonder how long he’ll hold up his grades studying right next to a big brother who’s whooping it up over Elmo.

“Ned,” I say to him on the phone that afternoon, “remember last night when I said that great school for Alex probably won’t happen?”

“Yeah.”

“Well don’t ever listen to your father unless I tell you to. They’ve accepted Alex to go there.”

Silence. “Ned?”

“Forever?” he says.

 

 

The Waiver

The story of money and funding in my adulthood began on an early March afternoon in 1982, in the living room of my second-story apartment in Ithaca, N.Y. My roommate Jon and I were wordlessly enjoying our intelligence and listening to the cold wind outside when, above our heads, something screamed.

We looked at each other and Jon said something that social media now abbreviates to WTF, then we heard tiny paws scrabbling and another shrill scream. Squirrels. “Guess those nuts for winter are running out,” Jon said.

Those long-gone squirrels (some gone longer than others) come to mind every June when the notice arrives in my mailbox from the NYC Human Resources Administration: “Dear Consumer, it is time to review your Medicaid/Managed Long Term Care/Medicare Savings Program (QMB) coverage. Please carefully read the printed information that appears below…”

I didn’t always but I sure do now, year after year, my stomach making little sounds that are probably spelled something like QMB. Never have the words said plainly what I, through the years, learned that the letter really means: Carefully obey and adhere to a set of shifting and unwritten rules or we will shut off the tap! When people want your attention, they talk about love and sex. When they want you on your knees, they cut off the money.

Parents of special needs kids say “Medicaid Waiver” the way German troops probably once whispered “Patton’s coming.” According to the waiver page of Medicaid.gov (“Keeping America Healthy”), “People with Developmental Disabilities who are not covered by Medicaid can receive similar services by applying for a Medicaid waiver.”

Services run from case management and service coordination to habilitation and respite – all stuff a compassionate society has degreed sensible and needed after the move some 30 years ago away “from institutional care for the elderly and persons with disabilities in favor of providing home and community-based services.” 

There seem to be several types of waivers designated by “section”: 1115, 1115(b), 1915(b) and 1915(c). I try to find out what these numbers mean by reading their web pages that are filled with words such as “home,” “community settings,” “continuum of services.” I still come away confused, left with just my familiar feeling that when my 16-year-old giggles over “The Teletubbies” any money that keeps a respites worker coming or a Saturday program open, that lubricates the wheels of help, is a godsend.

That money is invisible to me; agencies seem to get it directly. It’s also easy to interrupt. Once when I ignored the notice and the deadline passed, our home-respite worker soon called me. “My supervisor called me and told me not to come to you guys anymore,” she said.

I’ve tried many ways to mess this up, starting with ignoring the notice altogether (…my supervisor called me … ) to answering the questions honestly, clearly and on time. One June, preening with efficiency, I instantly handed the notice off to Alex’s excellent service coordinator to fill out and deliver to the Medicaid office weeks before the deadline. Our coordinator was on my phone three days later. “They said we can’t submit it yet,” she said. “They said we’re trying to submit too early.”

As I carefully read the printed information June after June, I also realize that keeping the money flowing is getting harder. Alex’s agency, for example, now has a full-time staffer to help parents wrestle with the waiver form: a full-time salary not going to a service coordinator, a camp director or someone to mop the floor of a residence home.

Not to mention how the bureaucracy annually tries to trick parents like me with not only the wrong form but the complete absence of an appropriate form (what I once heard the director of an autism school term, “The annual torture they put my parents through…”). The waiver form asks for various income information, proof of assets, other insurance coverage and similar matters. What it requires from parents like me, I learned the hard way, is a simple declaration across the top that my son Alex has no income and that his family’s income has no bearing on his receiving the waiver benefit. Nowhere does the form instruct me to write this down. In other words, the form asks for information that has no place on the form.

“Why yes,” I feel like telling Medicaid, “my son does still have autism.”

One year I handed the completed form to a Medicaid staffer and watched her amble behind the counter for a full minute, unsure of where or how to file it. God bless them for the money; god damn them for the cruelty.

“Medicaid waiver disabilities complaints” turns up nothing on Google. Is New York City special? I don’t think so: I once talked to a parent from Arkansas who said the only office in his state to take waiver paperwork, which must be filed in person, was an eight-hour drive away in Little Rock. What makes Medicaid act this way? Obviously we’re dealing with a fragment of government compassion that’s been dumped on an agency that, unsupervised, has no intention of gladly fulfilling a mission of compassion.

Yes, I know, better than the days of the Willowbrook, when there weren’t so many services and a good deal many more manacles. Now there are services, fueled by the government and because a few generations ago parents got together and demanded – by threat of vote – that there be programs to help those born like my son. Better than the days of Willowbrook, in the days, a high school friend observed once, “before the world became all about money.”

The Oakland County (Michigan) Community Mental Health Authority tightens its belt in the wake of a $21 million deficit caused by the cuts in Medicaid and rising costs and demands for services. The NYC Department of Education slashes $250,000 from a proven socialization program for middle schoolers with Asperger’s. In Limerick, Ireland, special-needs school kids endure oversized classes while their one-to-one teaching time has been cut by almost a fifth.

This is the way people with their hands on the money act when that money dries up, when the pile of nuts starts to seriously dwindle a long long time before the winter ends.

Eating at Me

Packing Alex for his 10 days of summer sleepaway camp goes pretty smooth until we get to the food: small bags of Cheetos, three bags of pretzels, a rack of Hebrew Nationals.

Family Packing Expert Jill tosses a bag of Cheetos and one of the sacks of Utz Extra Dark Specials in my direction. I bought this stuff for him to take to camp. “We’re not doing him any favors sending these things with him,” Jill says. She finds a second bag of Chee-tos and flings them at my feet.

“I wanted to send the things he likes,” I say.

“Maybe it’s time he learns to eat something else,” she replies. I’m just saying we’re doing Alex no favors.”

Well you’re certainly not.

“He’s got to get used to eating something besides this stuff-”

“Okay Jill, thank you!”

She mentions something about where I can go to eat Alex’s Cheetos. I know his diet’s limited, aside from hot dogs and chicken fingers (his coffee shop staple these days), little more than a parade of salt and big crunch that has seemed for too many years what Alex’s brain tells him is real food. It buys the peace, though it doesn’t secure what one recent academic study calls (at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2936505/) calls “nutrient adequacy.” Nutrient adequacy is whatever I find at The Vitamin Shoppe that dissolves in water in one of Alex’s little metal cups.

He’s never eaten many different foods. Baby food laced with heavy cream and maple syrup when he was still in a high chair. Jill herself started him on bacon in a Queens coffee shop, gave Alex his first brownie on a sidewalk outside a museum. For a while he ate the cheese off pizza. Ice cream and maybe yogurt. Once he mashed blueberries against his teeth. Once we gave Alex sliced watermelon but he just tried to piece the whole thing back together again. Nothing seems to have packed on the pounds like Risperdal.

Lately, though, Alex has lined up bowls of pretzels, Chips Ahoy and Goldfish as if making sure they’re there but at the same time expecting more and different events. He doesn’t seem to realize they’re food so much as just another something around him. Maybe he’s just bored. Variety for him is six months on chicken nuggets and then six months on hot dogs.

Yes, we’ve sort of just given up getting Alex to eat. He was bony before the Risperdal – and anything but sickly – and in the flurry of schooling him and finding education for the end of his childhood and the beginning of the rest of his life, we cherry-picked our fights. Being the parent of an autistic kid is bitch enough without feeling I failed in some other way, feeling I need to kick myself silently as I try to send him off for 10 days of hoping the camp nurse doesn’t have to call about my perpetual 3-year-old.

One does not push Alex easily. When we have spaghetti for dinner, he actually surprises me by coming around to fork some into his mouth, giggling until he chokes. He seems back on pizza, firing its name (“Peet-ZA! Peet-ZA!”), holding a slice up to his tightly closed mouth. Alex likes to eat in front of a mirror.

Bite of steak, Alex? Alex, how about a slice of tomato?

“Noooooo! No more! No more!” Up comes the arm to hold back unwanted food. Noooooooo ... Feeding Alex makes me realize why we shake our heads to indicate No: We’re making it harder for someone to put the unknown and unwanted in our mouths.

“Parents of children with autism spectrum disorders (ASDs) live with an ongoing challenge of ensuring their child with special needs is getting the nutrition he or she requires. And for many families, that’s easier said than done,” says the Today’s Dietitian article which should be titled, “How in Hell Is Alex Stimpson Going to Eat Enough to Stay Alive?”

Judy Converse, nutrition specialist and author of Special Needs Kids Eat Right, derides the “misinformation and misconceptions surrounding autism” and nutrition and calls for standards to screen for malnutrition in those with autism. We had such screens years ago, in a way: the spatters of food under Alex’s high chair.

“They’re left untreated. This leaves these kids with nutrition deficits that interfere with learning, cognitive ability, behavior, sleep, mood, and well-being – precisely the areas in which they can be most challenged.

“There is a shortage of professionals who really know child nutrition and know the issues of autism – the physiological as well as the developmental ones,” Converse says.

We once had a feeding therapist. Back then (and now too, for all I know, having given up), such specialists came few and far between. She listened to Jill describe the troubled eating of almost-toddler Alex and, deciding he might be a “challenge” soon afterward bounded into our apartment with such tools of eating therapy as pictures of bacon.

He didn’t eat much bacon for her, as I recall, nor even a picture of bacon. Later Jill got him to eat bacon in a diner. Shortage of professionals who know the issues of autism and anything else, from what I can tell.

(Read the article in Today’s Dietitian  here: http://www.todaysdietitian.com/news/enews_0411_01.shtml .)

Objectives

To define food selectivity and compare indices of food selectivity among children with autism spectrum disorders (ASDs) and typically developing children, and to assess the impact of food selectivity on nutrient adequacy.

Study design

Food selectivity was operationalized to include food refusal, limited food repertoire, and high frequency single food intake using a modified food frequency questionnaire and 3-day food record. Food selectivity was compared between 53 children with ASDs and 58 typically developing children ages 3–11 years. Nutrient adequacy was assessed relative to the Dietary Reference Intakes.

Results

Children with ASDs exhibited more food refusal than typically developing children (41.7% vs. 18.9% of foods offered, p < 0.0001). A more limited food repertoire was reported for children with ASDs than typically developing children (19.0 vs. 22.5 foods, p < 0.001). Only four children with ASDs and one typically developing child were reported to demonstrate high frequency single food intake. Children with a more limited food repertoire had inadequate intakes of a greater number of nutrients.

Conclusions

Our findings suggest that food selectivity is more common in children with ASDs than in typically developing children, and that limited food repertoire may be associated with nutrient inadequacies.

 

Morning of Plastic

 

Alex was to head for his school bus at 7:15. At 7:05, I heard those soft, dreaded syllables.

“Leopard?”

“Alex-”

“Leopard? Aw, lep – pard…”

“That’s okay, Alex. Let’s go get the bus. Alex, let’s go get the bus. Alex, c’mon.”

“Leopard?”

In the next 600 seconds, nothing else fills the universe but that 5-inch-long plastic leopard. And it’s missing. Nothing matters: Not the bus waiting downstairs, not going to school, not mom and dad yelling and not even Alex’s own realization that he’s doing something wrong.

I read once about what might go through the mind of Alex and people like him in such moments: Please don’t think less of me because I need to line things up in rows on all the furniture and need one of them with me sometimes. This is how I process knowledge. (Jill calls it “autism decorates.”)

Well that’s great, Alex, but you have a bus to catch now. Just grab some other animal. Here’s that raccoon you drove us crazy about two nights ago when you couldn’t find it. Remember? Why so goddamned picky this morning?

Just am. He knows he has the power to stop life. I despise him a little for whipping it on us so so often until we almost panic at again being caught between what Alex wants and what the world expects of him. Even if we find it, we accomplish nothing.

I start to yell – often my first parental impulse – but I’ve been here before. Nobody really beats autism. My tone is firm, stern. “Alex get yourself together and let’s go. The bus is waiting.” My tone is wise, deep, clear of panic.

A few minutes later, returning upstairs from telling the school bus to drive on, I hear Jill from as far away as the elevator. “You have to go to school,” Jill says to him. “I’m very angry with you, Alex. Very angry.”

She isn’t exactly yelling; nobody, not even Alex, could mistake her tone but she isn’t exactly yelling. “I’m sorry,” Alex says, patting her arm. “I’m sorry. Go to school.”

“No, Alex,” she says. “The bus is gone.”

Commonly some children with Autism Spectrum Disorders (ASD) autism “show an intense interest or preoccupation with an object, toy, video (or) task,” writes Dr. Judy Reaven, clinical psychologist and associate professor of The Children’s Hospital and the University of Colorado School of Medicine, on Autism Speaks. “It is sometimes difficult for parents to distinguish if the preoccupation is a characteristic of autism or a behavior associated with Obsessive Compulsive Disorder (OCD).”

Sure is, especially when Alex’s school bus just (LEFT).

“A number of psychological disorders frequently co-occur with autism. But it’s also true that some symptoms of autism overlap with those of other disorders such as OCD. So it can be difficult to distinguish those that are related to an individual’s autism from those that are part of another condition.”

Oh good, another condition. Alex’s many many animals stare at us from their rows on the edges of our furniture. As I’ve said before, they’re detailed down to the ruffles in the fur and the shine of the eyes, and somewhere in their rows is Alex’s idea of order. Sometimes he wants the “potomus” and sometimes the regular tiger. Whatever letters apply to what he does on these mornings, Alex’s condition seems to make him do something I really want to sit down and talk to him about.

I surrender immediately. “I’m sorry, I’m sorry,” Alex says to us, patting and patting our arms. “I’m sorry. Go to school?”

“No, Alex,” says Jill, “the bus is gone.”

“Go to school?”

“The bus is gone.” She hits gone with a deliberate pitch, parent-to-parent intonation for what I the experience dad see as pretend anger and concealed intent. “Go to school? Go to school?”

(Later I tell her about hearing her from the elevator. “If people don’t like it,” she says, “let them get their own child with autism.”) Surrendering makes me feel comfortable but I don’t want it to become habit. I catch Jill’s eye and shoot a half-hidden thumbs-up as she works him over with her voice, never yelling but stern, mixing needle and caress.

“I’m sorry. Go to school?”

“Alex, when you have somewhere to go you just have to go and then try to find what you want later.”

“Wantyouwant a-later,” he says to me. “I’m sorry, I’m sorry.” Pat pat pat. “Thank you, daddy.” Is he starting to realize, finally, that some action he lets himself take eventually hurts him? Isn’t realizing that how most people just get through a normal life?

We have a clean and quick subway ride to school. Alex even gets a seat. I stand over him and he offers a barrage of “I’m sorry…” before he says again, “Thank you, daddy.”

When we get off the train we’re about a block away from Alex’s school when he hoists his arm and says, “Puzzle?”

“We’re not stopping to buy you anything, Alex.”

“Puzzle? Puzzle.”

“C’mon.” We enter Alex’s school and start toward the stairwell leading up to his floor. On the way he swerves into a therapy room, dashing past the therapist (“Good morning, Alex!”) and to the cubbies of puzzles.

“OCD is often confused with the special interests or preoccupations characteristic of autism,” Reaven writes. “We have a wealth of research showing that cognitive-behavior therapies can help individuals with autism manage OCD symptoms. These include helping the person become aware of obsessive thoughts and compulsive behaviors and label them as such.”

Sounds like such therapy might work for Alex as soon as he learns to conduct a conversation beyond “’potomus” and “puzzle.” Overlapping layers sure bury stuff deep. Still, we do need something around here besides surrender.

When I get home on the leopard evening, Jill works on her laptop at the dining room table. On the other end of the table, flanked by the raccoon and the moose, sits the leopard. I point it out to her.

“Where’d we find it?” she asks. “I have no idea,” I say.

(Read Dr. Reaven’s full article here: http://www.autismspeaks.org/blog/2014/05/16/mental-health-awareness-month-it-ocd-or-%E2%80%98just-autism%E2%80%99)