Apt. 11D

Three Books About Unusual Families

I just ordered three books from Amazaon about unusual families. 

Priscilla Gilman's The Anti-Romantic Child: A Memoir of Unexpected Joy. 

 

Andrew Solmon's Far From the Tree: Parents, Children and the Search for Identity

Bruce Feiler's The Secrets of Happy Families: Improve Your Mornings, Rethink Family Dinner, Fight Smarter, Go Out and Play, and Much More

The Cost of Raising a Special Needs Kid

Jeff Howe at CNN.com talks frankly about the expenses of raising a kid with severe autism. It's a hard article to read, because the dude is still firmly stuck in the grief phase.

Howe's five-year old son has huge needs. He isn't potty trained. He has major behavior problems. He has major cognitive impairments. That part of his story is straight forward and indisputable. 

He discusses the financial obligations for raising a son with such huge needs. The child needs 24 hour care, so they employ a nanny who costs $24,000  per year. They spend $1,800 on diapers. $5,400 goes towards medical costs for their son. He says that they don't have the energy to do after-school activities and therapy for him. If they did, their expenses would be even higher. They are worried about the cost down the road, when his schooling is done. Full-time care facilities for people with extreme disabilities could be $100,000 per year. 

Those numbers are straight forward and indisputable. The government has some programs to help out with respite care and therapy, but as Howe says, it's a major pain in the ass to find those programs. Sometimes the reimbursement for services is so minimal that it's barely worth the time to fill out all the paperwork. 

What makes Howe's story so messy is that he is still firmly in the grief phase of special needs parenting. He is still very upset that his son is struggling with basic life skills. That's an understandable grief. But he's also grieving the life that his family won't have, because his son is different. This is selfish grief and, really, needs to end fast. 

Howe defines a "normal" life as one where "both partners pursue their dreams, attend social events with our friends, and our daughter receives the sort of two-on-one attention that would be her lot if we hadn't had Finn." It means a hefty college savings for his older daughter, so she can attend the college of her choice. 

This is the "normal" life that all us smart, dues-paying, elite college attending people believe that they are owed. There are two dominant "normal" upper-middle class lifestyles. One is dual working family with pristine daycares, or the single earning family with SAHM who is the pillar of the community. It involves a nice house in a nice community and one vacation per year to a hotel on an island with a swim-up bar and water slides of the kids. People like us feel entitled to this lifestyle, because we're smart, worked hard, and made lots of sacrifices in our 20's. Everybody else has that, so we should, too.

If you have a special needs kid, you might not get that. One person may have to end the perfect career to manage the schooling, health care, and paperwork that goes along with the kid. Your kid may not be able to travel to the fancy hotel on an island. You can't be a pillar of the community, if your child doesn't attend a local school and can't go to church. 

That part of his story has to be very grating to people who live outside the upper-middle class bubble. Nobody is entitled to the college of their choice, a house, a fulfilling career, and a nanny. Honestly, he needs to get over those disappointments pronto.

But let's get back to the part of his story that needs remedy. A family with a severely impaired child does have major needs. They need help from behaviorists who will teach the child to control tantrums, to not self-injure, to not destroy family property, and to stay within the home. There are basic safety issues. I know kids who have to be locked in their bedrooms at night, because they'll run out of the house at 3am and get lost. It's very hard to get the state or the school system to provide this help outside of school hours. 

Parents of severely affected, special needs kids do need sanity breaks. Howe's family paid $24,000 per year for a nanny. That seems like a lot for a kid who is in school from 9 to 3 every day. I didn't quite understand if his wife worked a paying gig or not. Some states provide something called "respite care" for those needed sanity breaks, but I've heard that the paperwork was monumental, the waiting lists are long, and the actual respite is too short. 

Uncovered medical expenses are a large problem with raising special needs kids. Insurance companies are experts at avoiding paying for therapy. There are very strict rules in New Jersey, but they still don't pay. At this point, our outside school therapy needs are pretty minimal, but others aren't so lucky. 

I wish that Howe had written this article without the grief and the entitlement. Those sentiments muddy the story. The real story is that parents do need more financial support from the government to help meet the monumental expenses of raising a special needs kid. 

Related: My guest-blog post at the Atlantic. 

Six Years Ago...

I stumbled across an old video of Ian when he was four. He had just learned to say a few words, and I was testing him. Waaaaaaahhhhh!!!! My baby is eleven now!!!! 

 

Eleven

Accomodating Disabilities

When Ian was five, his food sensitivites were pretty bad. He only ate certain foods. His gag reflex was so sensitive that I had to mop up vomit off the kitchen table a couple times a week. Lunchtime was particularly difficult, because he would only eat peanut butter sandwiches. However, I wasn't allowed to pack any nut products, even Nutella, for school lunch. There were too many kids in the cafeteria with severe peanut allergies. 

I can't remember how we resolved this problem though I do remember lots of phone calls with the school. I think he ate his lunch by himself in the hallway for a few months, until I figured out another food that he could tolerate. 

This was my only issue with the Peanut Police. In fact, I am very sympathetic to their needs, because my BFF has a daughter with extreme celiac disease. I know what one stray gluten can do her. My BFF has to educate teachers and other parents, because people are constantly handing her kid questionable snacks and treats. She has to pack alternative foods, whenever her daughter goes to a birthday party. She had to track ingredients in everything from medicine to condiments. It's a lot of work, which is very similar to the work that I've had to do with Ian. 

So, I am very sympathetic to the article in Slate about a parent who pleads with other parents not to bring snacks to the playground and to clean their kids' hands with wipes. But the commenters on the peice were not so sympathetic. 

Drugging the Boys

When Jonah was in preschool, he had trouble sitting still. He had a lot of energy and sitting quietly in a circle was not his strong suit. He was hard-wired to run. He started walking at nine months and then never stopped. I remember pushing his empty stroller behind him, as he ran the whole mile back home from pre-school. He had zero interest in passively observing life. 

He still is that way. During Saturday's trip into NYC, he leapt up on park benches. He tried to climb a wall into Central Park. He ran up the front stairs of the museum backwards. He moves. Constantly. 

If I wanted to drug him up, so he moved less and remembered to turn in his homework more consistently, I could get those drugs for him without breaking a sweat. But I won't, because he doesn't need them. He's a high-energy kid and that's how he is wired.

Nobody has ever urged us to medicate Jonah, because he does well in school and he never gets into trouble, but other parents have told me stories about teachers pushing them to medicate their boys. 

The number of boys who are diagnosed with ADHD has skyrocketed. According to the New York Times,

Nearly one in five high school age boys in the United States and 11 percent of school-age children over all have received a medical diagnosis of attention deficit hyperactivity disorder, according to new data from the federal Centers for Disease Control and Prevention.

One in five boys? Maybe high-energy isn't a bug of boys. It's a feature. And maybe schools and the world isn't set up to deal with high-energy boys. And maybe we should stop pouring chemicals down the throats of our kids and learn how to deal with boys who need to walk up the stairs backwards and leap on park benches and climb walls. Maybe. 

Activites For Special Needs Kids

Ian's disabilities became obvious when he was about 2-1/2. He'll be 11 next month, so a little math here... I've been trying to find the right place for Ian both academically and socially for nearly nine years. And I'm a little burned out. 

His perky new teacher who is straight out of college tells me that I should be reviewing Ian's homework with him every evening, instead of letting him work independently. (Can I tell you how much fun it is to get a parenting lecture from a 21-year old?) Uh, yeah, no. Instead, I'm researching appropriate summer camps and after school activities. 

It's not easy to find the right programs for Ian. It's hard to find any activities that are geared to special ed kids. Often it involves a lot of driving and networking and phone calls. The fact that Ian is cognitively strong, but has a language disability, makes it even trickier. 

It's hard to find the right activities that are geared to his specific type of disability. Some programs are aimed at kids who are extremely disabled and are much older. A few years ago, I enrolled Ian in an excercise program, and those huge kids - babies with the bodies of adults - were a little scary for Ian. One kid pinched him and he cried. Ian doesn't want to deal with kids who aren't cognitively at his level. Other programs are aimed at kids who have ADHD, who fly around the room, and the adults don't know how to talk to someone with a language disorder. Even among disabled kids, Ian is very unusual. 

My desk is covered with applications and brochures right now. Time to make the donuts. 

Steroids For Studies

Sunday's article about the kid who hanged himself after getting hooked on Adderall was a big topic of conversation around here. Ian is on a low dosage of a different ADHD drug right now. He gets a patch on his butt every morning. After he eats his Cheerios, he drops his pants. I stick it on and press it into his flesh for a count of 30 in French. It comes off at 3:30 every day leaving a big square welt on his butt. 

As the article pointed out, it is extremely easy to get these drugs. His school practically insisted on it, because they think it helps him sit properly in his mainstream classes. His neurologist is just a prescription writing machine and really doesn't do anything for him except take his blood pressure and hand out the drugs. 

He doesn't take it on the weekends or holidays, because he doesn't need it then. He needs it to concentrate on boring stuff at school. That's it. He's able to pass for normal at all parts of life. So, really the drug is just about making the kid conform to school. That makes me a little sad, because the drug isn't without its side effects. 

Ian is on a super low dosage. It's really for a kid half his weight, but still there are side effects. If it doesn't come off promptly at 3:30, he can't sleep at night. It makes him pick at his t-shirts. I have to toss out his t-shirts after six months, because he pulls about the lining of the shirts or he bites holes in them. It increases anxiety, depresses appetite, and slows growth. But we keep him on the drugs to be good citizen-parents. Schools just aren't set up for kids like Ian. 

Does My Child Have Autism? What Is Autism? Why Won't My Kid Talk?

What is autism? 

Autism is three separate problems rolled into one. 

1. Autism is a Speech and Language Disorder. Autistic people do not understand language in the same way that other people do. (I will refer to nonautistic people as neurologically typical or NT's.) They do not learn to talk or comprehend speech in the natural, organic manner that NTs do. These problems manifest themselves in different ways. 

Some autistic people will learn to talk at an unusually early age. Their deficits come out later in life, when they have trouble comprehending other people's words. Conversations with a verbal autistic child may be one-sided. They have trouble answering questions about a reading assignment. They can't explain why a character in a book did something or how a character knew something. 

Some autistic people learn to talk eventually, but it is a very arduous process. They learn to talk, in the same way as NTs learn a foreign language. They have to translate the pictures in their head and turn them into words. Like NTs in a foreign language class, they need rules, verb conjugations, and lots and lots of practice. They memorize all the words to a movie, because their brains are desperately trying to figure out all the gibberish around them. 

Others never learn to talk at all. These kids are so cut off from our world of words that they stop bothering to interact at all. They go into their own worlds and are said to be not "related." 

Because autistic people have trouble understanding words and language, they compensate by being especially attentive to visual information. They are human GPS systems. They are glued to computers and videos. Autistic people who have good hand control may become wonderful artists. Others who are able to make the visual pictures in their head move may become engineers. 

In the past, scientists thought that verbal autistic kids had a better chance at leading a normal life than children who lead to speak gradually. They don't think that anymore. 

2. Autism is a Sensory Integration Disorder (SID). Autistic people are extremely sensitive to sound, touch, sight, smell, and taste. Not all autistic people are sensitive to the same things and in the same way. 

Some autistic people are so picky that they only eat three foods. Others can't tolerate the sound of a parade or a loud train. Others gag at the smell of a church. Others pick at the tags on their shirts. They don't like the feel of sand on their feet. 

These sensitivities fluctuate. Sometimes a child will be more sensitive than other times. Stress may be a factor. 

My son hates the feeling of tags on a shirt and long denim jeans. These sensitivities distracts him in school. He hates when people touch him lightly on the shoulder. He hates the smell of incense in a church. Sudden loud noises make him flee in terror. He stuffs his fingers in his ears during particularly loud movie previews. 

Other kids are almost dead to these stimuli. They are less sensitive than NTs. They don't feel pain when they fall and may love dirt and slime. They don't have enough control over their limbs to properly hold a pencil or run in a straight line. They try to have some sensation of feeling by flapping their hands or twirling in circles. The brain needs sensation to work properly. 

Some kids will be sensitive about one thing and not another. 

Eye contact is a sixth sense. Eye contact is visual touch. Autistic people may have trouble with eye contract; it makes them extremely uncomfortable. Avoidance of eye contact exasperates the language problem, because we take in millions of conversation cues by reading people's faces. 

These sensitivities create distractions, stress, and anxiety. 

SID problems can decrease overtime. Autistic people need gentle nudges, baby steps, to overcome these problems. However, they probably never go away. Some adult autistic people find relief with anti-anxiety medication. 

3. Autistic people are Extreme Systemizers. They like to put things in order and find patterns. They are a human Dewey Decimal System. 

Some autistic people, who have lesser deficits in other areas, can use this characteristic to their advantage. They find careers that prize systemizers -- computer programmers or librarians. 

Others become so distracted by systemizing things that they close themselves off. They may systemize strange things that have no value and really should not be systemized. 

My son was an early systemizers of words. He was able to decode letters and written words at an unusually early age without any instruction. However, he was so consumed with systemizing and decoding words that it would distract him from the world around him. In nursery school, they learned to not seat him next to a bookshelf because the words were too distracting; he wouldn't listen to the teacher. 

Systemizers may have an extreme need to systemize the world around them. Like OCD, they like to have their bedrooms organized in particular ways or wear certain colored shirts on certain days. They like fixed schedules.

Because the world is not an organized place, this lack of organization will cause some autistic people great anxiety. They find peace in an ordered world. Anxiety then leads to a further shut down. 

 

What Now? Should I Panic?

No panicking allowed. If your child is like this, don't panic. There is a lot that can be done, and lots of kids grow out of the worst problems. You'll find good people to support you. This post has gone on long enough, so I have to cut it short. But if you have a question, leave it in the comment section. 

Google Searchers

From time to time, I check out the google search terms and phrases that lead people to my blog. It's a glimpse into the soul. What questions do people plug into the modern oracle of Dephi? Some of their questions are repulsive. Others are painful. 

I feel most for those who plug in questions about autism. "Why Won't My Kid Talk" "What Should I Do When My Kid Screams?" Seven years ago, I was one of those people. I didn't know what was going on with Ian and neither did the doctors or his teachers. So, I turned to the Internet for help. But even the Internet wasn't that helpful. The current medicial defintions of autism were useless. The chatrooms were full of hysteria and misinformation. 

My next post is going to be for the random google searchers. I usually ignore them. I don't SEO my webpages. I would rather have a small community of regular, informed readers, than a larger audience of One Time Charlies. But I have a soft spot for confused parents. I'll SEO the crap out of the page and hopefully, it will help someone.