The Judge Called…

And asked me if I would like to withdraw the hearing.

I didn´t know it was up to me. I didn´t ask for a hearing! I just wrote a letter..

So apparently, when the insurance company went ahead and honored the prescription, they didn’t have much of a case anymore. Covering the prescription means they admit my son needs his medicine.

I lost some sleep, an hour and a half of work, and not too much else.

It could have been far worse.

I am saving all the letters his doctors wrote for me. For next year.

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I Was Wrong, Dead Wrong About Insurance

So I got a letter in the mail today. Two weeks from tomorrow I have to present my evidence at a hearing over my son´s medication. I don´t know what I have to argue. I have to argue that my son needs his meds? I have to argue that I am compliant in how the claims are submitted to insurance? I have to prove he really has a prescription?

I don´t understand what the fuss is. Two years ago a doctor prescribed this medicine for my son, and it put him on a cycle of sleepiness after each dose, so we switched him to the ER version. Clonidine ER. Now he is just normal all day. He gets tired after lunch, he is a natural napper, but this is not from his meds. He takes them in the morning. He has a normal life now, like other children. He is not trying to seriously injure anyone anymore.

So tomorrow I have to call the Legal Aid number on the back of the hearing notice and try to get a lawyer to care about my problem enough to go pro bono. I have to call all his doctors, as there are three who approve of him being on this medication, they all consulted each other- the child psychologist, the child psychiatrist, and his pediatrician. I suppose I need statements from them.

The hearing happens during my workday, of course. Maybe I have to push back his OT referral. I don´t know how I can arrange to double my appointments when I have to run around gathering evidence.

I know this must be routine for them, but it feels a major inconvenience to me. It is distressing. I wish they would just give me insurance coverage and be done with it. If they don´t want to cover the meds, just tell me. Don´t drag me around like this. I haven´t even seen his casefile. I don´t know how to get access to it, I don´t want to drive to the capital for it, I have to work, I am low income-that is how I got this insurance in the first place, why are they doing this to me? How can I work when I have to gather evidence frantically in two weeks like this? I have to view this casefile to see what the problem is, I don´t understand at all how a child can be prescribed a medication and the insurance can dispute it. What the hell are doctors for?

 

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Insurance and Things

So I wrote an ¨appeal¨ in the form of a letter to the state´s subsidized insurance, requesting that they reconsider denying my son his medication and pointing out that there is little point in subsidizing my insurance if they want me to spend a quarter of my income or more on medications. I also reminded them that doctors prescribe medicine, not insurance representatives.

Somehow, miraculously, that worked. Well, sort of. They are going to cover my son for four more months. Why four months? Because that is the estimated time in which I will fill up my deductible and my own insurance will begin covering my son´s medication again. Which means I have to be ready for this again at the next New Year.

So I won´t get my money back, nor will I get a guarantee that they will cover my son, but I do get a sort of respite until the next holiday season.

Both of my boy children are now obsessed with the protagonists in their recurring nightmares. My middle child has long been interested in animals with menacingly sharp teeth, and my oldest is now playing Five Nights At Freddy´s- which he has declared his new favorite, topping the Minecraft he was playing for years. A huge step up from when he would become paralyzed at the mention of the game.

So this is probably a good development, that they face fears and lessen the effect of those nightmares. My middle child, however, has not had a single nightmare since I removed dairy from his diet. Which I find very interesting and is a cause of some regret, for if I had known, of course I would have done it years ago.

All of my children show evidence of milk sensitivities. The baby will be five (I know, I know, I should stop referring to her as ¨the baby¨) in a few months and I am going to try removing dairy from the house at that time. We will see what happens. Their father is lactose intolerant, so it only makes sense. If the children´s permanent sniffles and skin issues clear up, it will be worth it.

All the single moms I know are unhappily dating or getting over breakups, or even leaving their children with relatives so they can move closer to their partners. I am so very glad to be spared the emotional upheaval. I would have no patience for dating and zero tolerance for any uncertainties. Our life is settled and predictable, I think I have successfully created an environment in which the children and myself can heal-if their progress is any indication. Even if the man I spoke to last year decided he wanted to rekindle something I would not have the space for it. I have no appetite for it anymore. I want to give my time to my kids. I mean, I already do, I just don´t want to change how it is. They seem happier than they have ever been.

My middle child is reluctant to tie, zip, or button things. So my oldest son´s OT wants him to be evaluated, and she wants to see my oldest weekly to work on his stamina and his trunk, because winter has made him a bit weaker than he was during his bike riding summer. So our appointments, which I had been keeping at a manageable five per week are about to jump back up to seven again. In sixty days we start practicing for our service dog who will arrive with the following year, the children will have to take walks every day and we will designate a quiet spot for the dog to ¨go on break¨ where children may not intrude. A corner somewhere, I suppose.

Some neighbor kids just took over my downstairs. I have to go supervise..

 

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Making Sense

The kids are doing well, I would say. Excellent, if you compare them to a few years ago.

I have been fighting for free time. I got drunk on free time over the holidays and now I am left bereft. I understand their need for it, I am glad I can give them this much. I get less, they get more, but they need it. They thrive on it.

I have been thinking a great deal about autism, trying to use it as a lens with which to puzzle out my childhood. But it seems to be instead a prism, rather than a microscope, and the blindingly painful light that was my life before diagnosis is now splitting into rainbows. I think there is only color going forward. The past is what it was. I am how I am, how I was, and there was no diagnosis commonly available for verbal ASD when I was growing up. I was tested, believe me. Tested and tested in every humiliating way.

The children ask about their father more frequently. What was once a rare question, asked with a quaver, is now a straightforward request for clarification. ¨Why did our father act all crazy?¨ Because crazy, you know. They want me to lay it out, though, and I do. I take them through the steps, the ever worsening spiral, the refusal of medical intervention-at their prompts. I don´t tell them more than I have to. I leave out some things for when they are older, like judgement.

I am doing exposure therapy for my PTSD. It is fucking grueling. I might abandon it. It is a sort of torture, to remember a people and these places and the words I am forgetting. I deny my children their own culture, you know, the less I deal with it. Not that they want to know, but they are small, their culture is old, far older than they can fathom. So I feel a sort of parental obligation to remind them how to reply, what this food is called, etc. There are surely nice people in their culture, surely just their family is this sick. It cannot all be culture, can it? I forgot how to count over ten and I didn´t even miss it. I stopped babbling to myself in the car in other languages, five out of seven days. All I speak is English. It´s true. I have no right to speak pidgeon. There is no one who understands any of it here. Foreign languages in toddler speak just don´t fly, anywhere.

I am just thinking, too much. Trying to figure out who I was and who I am and if I can reasonably reconcile any of then with now. I am examining my parenting to see if my children are getting my best, improving what I can. I am cutting sugar. I am working at it, at all of it.

 

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Holiday Tantrums

I have had a taste of how holidays feel to parents of neurotypical children, because my own children have been so much improved of late. We spent a week without incident, without appointments, and though they were overwhelmed at a family Christmas they did respond well to my interventions and I heard some positive feedback instead of the usual criticisms this year.

My middle child did melt down today, a few times, because his lack of motivation in our new points system means that after a few weekends and extra days off he had of course run out of points. So he had to stop watching people playing video games on YouTube.

He has been doing this very often, watching people play online. More than I am sure would be appropriate for most children, but his moods have been so very improved and his school behaviour so good, that I allow it if he has the points and the narrator uses appropriate language and the game is not a shooting game.

Today he was visibly tired. His appetite has been low and his protein intake sup-par, and he was up coughing the night before last. I was expecting a fit, really.

So when it came I was not surprised. I tickled him, and that worked for a bit and then it came back. He by now was on one of those loops, where he was lacking logical reasoning and couldn´t see the big picture. So I gave him the Theratapper, which he resisted so weakly that I did use it on him over his protests. It worked well for about six minutes and then it started again. I popped a saltwater taffy in his mouth, rolled him in a blanket, and carried him to the couch  to sit him in front of a cartoon. Then he was done for nearly an hour.

It started again when he left the couch, I found him weeping on the stairs and I held him and I told him I was so sorry that he was so upset and he knew I meant it. He railed against the point system and said he never consented to it and he wanted off of it. I told him he could opt out but then he was also opting out of privileges, because points are how he gets them. He was upset, but he knew the logic, and I reminded him that I just cannot do it all by myself anymore. That I gave them all a long time to start helping around the house and no one did, so now we have points. If you want privileges, you put in the work.

Their responsibilities are not much. Mostly clean up after yourself stuff and put your own things away. I am adding one each month. This month it was put away clean laundry.

The list of everything they can do to earn and spend points is printed out and taped in three places in the house.

He spent a long time being grumpy about it but the fits were gone. He came to me and said he was going to put away his laundry to earn one last turn on the computer before bed and I consented to granting his points immediately. That is how he will best learn the reward system. I told him later how proud I was of him to make good choices even when it was hard and he smiled and ran off.

He also agreed to go to a playdate with us, after days of insisting I get a sitter. I arranged for the sitter and then when he realized he would be doing nothing instead he cried about it and had me cancel the sitter.

I have to hold a family meeting about the playdate and going to the store tomorrow. Hopefully that will stave off all whining and fits about doing something other than sitting at home. I don´t blame him. I would rather be home, too. I cannot be upset with my kids for being like me, can I?

 

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Insurance

I don´t like to mention it much, but as a single mom with one job (sole source of income) and three kids I am not super flush with cash. I am lucky in that when my deductible on my insurance comes up each year that the state steps in and provides me with subsidized insurance for the few months that it takes for me to hit my limit again.

This year, as last year, the state has decided that one child´s medication is suspicious. It is, of course, the most expensive medication any of us take. It is exactly one fourth of my monthly income- for a month´s worth of medicine. So the state requests documents and papers from me, from the pharmacy, and from the doctor- most of which it rejects as not up to their standards or missing something. Last year this game went on for exactly five months, which was coincidentally when my deductible was up and my private insurance kicked in to pay for it all. That is when I received the paperwork stating that the issue was resolved- that the medication would be covered by the state (if my private insurance wasn´t already paying.. supposedly).

Last year I tried every other sort of medication combination that I could when I could not pay- and my son did not do well on anything else but Clonidine ER in pill form (never the patch, never again). This is not medication for my autistic son, either. This is medication that my PTSD child takes so that he can control his impulses, his lizard brain. We had a huge discussion on the lizard brain while waiting in the pharmacy drive thru. Any moment can be a teaching moment, right? I digress.

This year I was not expecting any issue. Because of the paperwork I received last year I was certain they would not deny my son his medicine this year. But already they have denied the authorization from the doctor. I tried calling today (their customer service and state ombudsman lines are always busy), put in another request through the pharmacy, and also let my county representative know what is going on. But I am not beating about the bush this year. I am going to pay upfront with cash and keep my son on an even keel.

I am lucky that it is only that much of my income. I cannot imagine having to plan to part with more of it. Tomorrow I pay for the meds and begin a waiting game each month to see if they want to cover my son´s medicine. It seems silly to tell me that I qualify for their insurance because my income is so low, only to have them deny the medicine my son needs and thus lower my income further. But it is better than just paying the full deductible, much better.

Last spring I had a sit down session with the county as a low income mother of a special needs kid to discuss the spending account they have available for kids to get the additional care or therapies that they might need. I wanted the funds to go for the service dog. Of course, you can spend the money however you like in regards to your child´s needs but NOT for a service animal, they informed me. So I turned it down. My insurance covers everything else that autism entails.

My employer provided a health insurance previously that denied insurance to my oldest son outright. Because he is autistic. Apparently, if you are born other than neurotypical, insurance companies have the right to deny coverage. I was outraged until I realized that at least they were recognizing that he was inborn ASD, and not unnaturally so, which was Kanner´s whole take on autism- that it was caused by parenting and not innate. So at least the perception of autism has evolved properly.

So my private insurance is great. My state is doing me a humongous favor by providing me with most of my coverage until my deductible is met, and this financial blip is worth it. My son has made visible progress on this medicine. I am not giving it up.

 

 

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Reading Away The World

I am addicted to the written word more than to anything else. I can bear torture and malnutrition and all sorts of neglect if I have something to read.

Luckily I currently have nothing of that sort to bear, but I did get weary of reading parenting and special needs books and so I took off November and December and devoured some decent science fiction instead.

Now that I have Neurotribes by Steve Silberman I am back to reading for research purposes. However, the author writes like a novelist. So it doesn´t feel like work. I am a few hundred pages in, and I have (thank goodness) just finished the chapter on eugenics. I mean I am glad to be finished with it.

I read last week that ISIS was practicing this, that there had been a call to kill children in their territory who suffer from Down Syndrome. I have no idea if this was substantiated, I am currently cut off from my most reliable translation and verification source.

But there was one sentence in this book, about the killing program the Nazis instituted, where they eventually lowered their requirements to murdering even those children who were ¨annoying¨. Not just non verbal, or differently abled, or mentally unstable, or low IQ. Yes, they killed children of low IQ. But they dropped their standards to murder children who were annoying, which I translate to mean ¨Not behaving as adults expected them to.¨ Which describes pretty much every child at some point in their lives, and nearly every child who is living through a war and separated from their parents while being kept in a hospital full of murderous doctors. Fucking hell.

The contrast of reading the qualifications for ¨final medical assistance¨ or whatever it was called while watching my son run around on his toes and bash himself into the couch was really hard- not because there is much wrong with his behaviour but because those doctors would… you know what I mean. But just as hard as understanding that is thinking that this shit still happens. Because hundreds of thousands of children died and apparently the world did not learn that it was wrong.

Because people are still sympathetic to parents who murder their special needs kids. I have no idea why. This is what I read ISIS was doing last week. Why is it wrong if ISIS does it and okay if a caregiver does it? Why is it ¨understandable¨ in such a case? I don´t understand the horrors of Nazism or ISIS any more than I understand the barbarity of a parent murdering a child.

What qualifications did we as a society set for it to be okay? Kid needs care 24 hours a day? Kid cannot speak? Kid throws fits? Kid is annoying? Really, we are Nazis like that? Kids are not fit to live if…

Read. Learn. Be human.

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