Life in a Special Family

Yesterday morning, as Steve was putting his coat on to leave for work, he carefully explained to Ian that a woman's breasts should not be called "bongo drums." Instead, they should be very respectfully referred to as "head lights" or "hooters." 

Scan0001Our family life is very different from other families, because we have a kid who is very different from other kids. We adore our kid and love, love, love his differences. His artwork blows my mind. (This is his concept for the best video arcade in the whole world.) Even the parts of him that are considered disabilities, such as his unusual use of language, cracks us up. If there was an operation that would make him average, I probably wouldn't do it. I like him the way that he is. 

However, there's a whole lot that goes along with having "a different kid." That stuff I could do without. 

On Tuesday, I mixed up sandwiches in the lunch boxes. Jonah got Ian's plain ham sandwich. Ian got Jonah's sandwich with the lettuce and the mustard. At 9 am, I received a call from school informing me about my mistake. The school doesn't have a cafeteria, and Ian couldn't go hungry. I drove to McDonald's, got a happy meal, dropped it off at the school, then drove home. (2 hours) I threw in a load of laundry and bought food for dinner. (40 minutes.) Then I drove back to Ian's school, waited in the cold, texted Jonah to make sure that he got home alright, drove Ian to speech therapy, observed the new therapist (terrible), drove home (4 hours). That's a full time job. 

On Wednesday, I traded phone calls with Ian's case worker. After lots of thought, I decided to dump the new therapist. After school, he had special swim classes at the Y. Jonah worked as a volunteer. I networked with other moms and scored a playdate for Ian. On Thursday, I dodged out of a photography class to talk with Ian's case worker for 20 minutes. I requested that the school district provide in-home speech therapy and a social skills class, so my kid wouldn't call a woman's breasts "bongo drums" in public. Then she told me that we had to assemble a file to present to the Board of Ed in order to get these services. The first thing she needed from me was a three page written justification. It will take months to get approval. In the meantime, I need to find a better therapist and one that isn't 1-1/2 hours away from the house. 

I really want to be one those "free-range" moms. One that lets her kids out the backdoor of the house and then ignores them until sunset. I would even not mind being a "tiger mom" who berates her kid until she gets straight As and then basks in the glory of producing the perfect child. Instead, I have to be a warrior mom, who has to combat bureaucracy with nerves of steel and drive like a trucker (a trucker who listens to NPR) all over creation for services. 

The trouble is that all this warrior mom stuff is exhausting. I hit a wall a few weeks ago and I realized that I needed to do a better job taking care of myself. More photography classes for me in the future! 

12 thoughts on “Life in a Special Family

  1. I had so presumed the bongo drum story was about J. and not I.
    Good thing that you’re good at 3 page essays🙂. And I am looking forward to seeing the results of the photo workshops.

  2. “Jonah worked as a volunteer.”
    Awww.
    “Then she told me that we had to assemble a file to present to the Board of Ed in order to get these services. The first thing she needed from me was a three page written justification.”
    Good thing you’re a native English speaker with graduate degrees, eh? What an ingenious service prevention method.
    I was talking to a friend of mine this past week. Her preschooler has a bunch of physical issues and speech issues and other issues. Anyway, when she took him to the public school to see if he could get some services there, they told her that he reads much too well to qualify. After I heard that story, the wheels in my head started turning, and I finally remembered the magic word: “hyperlexia.”
    http://en.wikipedia.org/wiki/Hyperlexia
    (I learned about hyperlexia here. Thanks, Laura!)
    Perversely, the very symptom that is being used as an excuse not to provide public services to this child is a huge red flag that (to a more competent or disinterested evaluator) would signal the need for intervention.

  3. Laura: Then she told me that we had to assemble a file to present to the Board of Ed in order to get these services. The first thing she needed from me was a three page written justification.
    Amy: Good thing you’re a native English speaker with graduate degrees, eh? What an ingenious service prevention method.
    Me: I am thankful every day that not only am I me (obsessive and determined and educated) but also that we had come into an inheritance just at the point E was having trouble and so we could afford all the crap we needed to get him the services he needed. I don’t even want to think about what other parents without the education or funds have to go through because as it was, I had a nervous breakdown during the process.
    So my question is this: how can we either change the system or provide more support to the parents without my advantages? Any specific advice? I’m on the Special Ed Parent Advisory Council, but as far as I can tell so far, it’s for parents with kids already in the system. How does one reach out to parents who just don’t know yet? Their only hope involves people with a strong financial incentive *not* to give them services.

  4. AmyP – yes, it’s soooo good to have such strong gatekeepers because, you know, there’s such a run on special needs services by people who don’t need them.
    Wendy – and even if you do have the funds, navigating the system to find the best therapist with the best strategy suited for you child’s particular needs and personality is a huge challenge.
    Finally, like Laura noted, you need time too to ferry the kids about to various programs plus organize your home life in a way that you can support what is being learned weekly on a daily basis.
    This is probably a crazy idea because the needs might be too varied but is it possible with your special needs mom networking to hire someone yourselves to teach a social skills to a group of your kids at someone’s home once a week?

  5. Can you use logic on Ian, noting that, while you can and should bang on bongo drums, if you band on a woman’s breasts, you usually get in trouble. Therefore, breasts are not bongo drums.
    The arcade looks good. I’m glad there are games there I remember, and air-hockey. I think it needs a tron game, though. Are there still video arcades? Maybe at places w/ terrible pizza, I guess, but are there stand-alone ones? I didn’t think so. I loved them as a kid, though.

  6. “how can we either change the system or provide more support to the parents without my advantages? Any specific advice?”
    My first questions would be, what do other countries do? what results do they achieve? what do we learn from their efforts? (Note that countries that are very different from the U.S., like Denmark, might not be the most informative.)

  7. “My first questions would be, what do other countries do? what results do they achieve? what do we learn from their efforts? (Note that countries that are very different from the U.S., like Denmark, might not be the most informative.)”
    It may well be that the US is above average among developed countries and that we are more a model than otherwise. I googled France autism and immediately got this:
    “Recently I was invited to Paris to present at a prestigious international colloquium on autism and education, which was organized by the INS HEA, the French Ministry of Education’s training institute for special education teachers. Seventeen years earlier, I had left France because in those days, children with autism did not have the right to an education, and my son, Jeremy, was severely impacted by autism.
    “It was an emotional moment for me, standing there, addressing 500 attendees in a lecture hall of the Universite Paris Descatres in Bolulogne – Billancourt, explaining my son’s educational experience in the United States, where all children have the right to a free and appropriate education under IDEA.
    “In 1993, my family left France, where we had been living since 1981. Both Jeremy and his sister, Rebecca (who is neurotypical), were born in Paris at the time when children with autism were considered mentally ill, not developmentally disabled. They had no right to an education. Instead, they were enrolled in day programs on hospital sites, where they were treated with psychoanalysis. Parents had no right to visit the day program, nor did they receive any communication about what went on during the hours their child spent there.
    “When Jeremy showed autistic tendencies, I was told by the powers that be to take him to see a psychoanalyst. The psychoanalyst concluded that Jeremy was autistic because he suffered separation issues from breast-feeding. This the analyst gleaned from watching him spin round objects (which reminded him of his mother’s breasts) and chase after one that he had “lost” when it fell and rolled under a piece of furniture.”
    http://www.huffingtonpost.com/chantal-sicile-kira/autism-parenting-autism-a_b_607917.html
    The French situation has improved since Sicile-Kira’s experiences, but wow!
    I guess what it’s easy to forget is that there’s been tremendous progress in psychological science in the past few decades and that progress has not happened at the same speed across the world.

  8. Watching my kid’s hyperlexia was one of the coolest experiences of my life. When he was 2 his brain started decoding written language, so he was able to read at 3 — way before he could speak well. When he was upset, his ability to understand verbal directions went down to zero. So his teacher and I would have to write him notes. He couldn’t concentrate if there was a poster or a bookcase next to him. His eyes constantly dart over to the book or the poster trying to code the words. He would read everything. The ingredients in a can of soda. Anything. And the smaller the better. By the time he was five, he was in the 99.9% for language decoding. Unlike most hyperlexics, he was in the 99% for comprehension, too, but that was when the language was simpler. He has enormous trouble with abstract language, so his reading comprehension has dropped way down. But he is still decoding. He will work at a video game for hours and hours figuring out every little alley way and trick. Just amazing.
    re: social skills. Yeah, social skills can be taught. We do some of it at home whenever we can. Lesson from last week – you can’t flip out when a 3 year old baby kicks over your train. The bongo drums comment was less about social skills and more that he couldn’t remember the word for breasts. He said it with a smile on his face, so he knew that wasn’t the right word. He’s like a stroke victim sometimes when it comes to locating the right words.
    Yeah, maybe I’ll make a social skills class at my house. It’s just more work.
    The system is so, so, so, so stacked against people w/out a certain skill set and resources. It’s absolutely not fair.

  9. I think the only solution to access for the dispossessed is abundance. As long as there is strict gatekeeping, those least able to navigate the system will get the least resources.
    It might help, though, if the gatekeeping was done by entities other than the individual school districts. Of course, that solution should come with funding, though, federal gatekeeping with federal funding. SSDI (Social Security Disability Insurance) is a problematic system, but it doesn’t seem like it could be worse than the current system for awarding special needs resources. A problem with that model, though, is the continuing need for reassessment in education.

  10. I’ve said many times before that it’s a full-time job equivalent getting your special needs child the services that they are supposed to have under law and with the full funding of the government.
    I drop interviews and responses similar to your three-page written justification into the black hole of a bureaucracy where no one will ever respond if I don’t push and prod and demand it from them. They will push my pile of paper into a file folder and move on. Then someone else will grant me an interview to get them “up to speed” on her case file that is literally inches thick.
    Then they’ll send me some asinine survey about how they’re doing at providing care and if the people who work with my child help me feel like a better parent? And I will do my best not to snarl at someone the next time they lose track of our request to have our child reassessed as per the law to ensure her ongoing access to services now that she’s over 15. . . .
    Bitter, bitter, bitter, I know.

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