Monthly Archives: December 2015

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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Waiting For The Bus

Each day I drive my children to the daycare, escort the youngest inside and wait outside with the others for the bus.

Last week one of the daycare staff brought out a little boy to wait with us for the bus, a boy that I had not seen before.

He had a nice jacket, better than my boys do, but it was gaping open. I thought perhaps he had not mastered the zipper yet. I never assume anything about motor skills, not with my eight year old unable to tie his shoes.

I asked him if I could zip his jacket. I watched his face carefully, and though he moved his head, I could not discern assent or dissent to my question. The daycare worker told me she thinks he said yes.

I started to zip his jacket, and had to stop. Because there was no zipping apparatus at all, just the teeth with nothing to join them. I overlapped the edges and asked him to hold his arms over, like a bathrobe, and told him I was sorry that the zipper to such a nice jacket was broken. He nodded in agreement.

The boys got on the bus, we waved at the steamy windows.

Walking back I asked the daycare worker if she thought he needed a jacket. She told me that when she brings in the snack cart for meals and snacks his sister would burst into tears at the sight of it. I asked if she ate well, and she said ¨Oh, yeah¨ with wide eyes, as if she ate more than could be believed. She then said ¨I think it´s like that.¨ In answer to my question.

I knew what she meant. No one wants to admit it, the horrors of child suffering.

So I went home and I came back to the daycare and I dropped off a jacket to the same worker and I asked her to return it if it did not fit. It was my son´s, from last year. My daughter would have fit it next year. I bet she would be thrilled if I found her a girl´s jacket by then instead. I didn´t really need it back, but I figured that might be the only way I would know if the boy needed a different size.

I didn´t hear anything else about it. I think it fit. I hope.

Merry Christmas. To you, but more so to him and to all children like him and his sister.

 

 

 

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Third Christmas

It is our third Christmas, and this is the first year that I have been able to gift everyone almost the way I want to. From my boss to the bus driver to the local sheriff.

So I am exhausted. This might have been a mistake.

Next year remind me to mix nuts in jars with M&Ms and slap a bow on top.

It took me eight hours to wrap presents last weekend, and I still have some to go.

I hope everyone is well!

I hope to post when time permits!

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Upping the Game

So I have finished reading Transforming the Difficult Child: the Nurtured Heart approach by Howard Glasser and Jennifer Easley.

I am implementing the point system laid out in the book in the hopes that my children learn some more motivation and also a better sense of worth and accomplishment. It has been a week since we started and I feel I might have made it too easy.. but they are excited, so that is good.

Tomorrow my middle child is cashing in his points to take the others to the indoor amusement park! I am going to be sore for days.. climbing through hamster tubes and tunnels and rope bridges might be too much for me. Last time we went I came home, gave them lunch, and fell asleep for hours.

Today I had the neighbor (who is also a dear friend) babysit the children in the morning while I did some Christmas shopping. I fell asleep in the afternoon and I woke up grateful that I was now able to do this, without the children getting into any mischief. Their growing maturity has made my life so much easier, I was thinking.

I sat down for a snack and a peek at a book and my youngest told me to come look at the living room. I asked her what for, did she clean it? And she nodded in assent. I stood at the doorway and saw there was something on the floor that wasn´t there before my nap. She had taken apart a draft sock (the things you use to block drafts in windows and doors) and thrown the innards (rice) all over the living room. She made sure to get handfuls in corners and behind furniture and had strewn the rest everywhere she could.

I sent her up to her room and got out the vacuum and quickly discovered that I could not get it all up. I sent her brother up to fetch her to pick it up grain by grain in the corners and along the wall but she had fallen asleep. I woke her up, set her on her feet gently and told her she had some work to do before she had any rest.

She did pick it up the best she could. I have no idea what she made that mess for in the first place. I will ask her tomorrow. I hope she sleeps in. This is probably the first time in her life that I have interrupted her nap when we were home and had no where to go.

Today my oldest child figured out how to link the babysitter´s laptop with our home computer and play games online together. I assume all he did was add a server address, but the sitter was still impressed. I hope he always has this ease with computers. He got on when he was thirteen months old and has wanted to do nothing but since then. I have him block coding (which he loves) in Minecraft and have asked him to please use straight Java instead, but he likes the ease of blocks. Maybe I can get him into another language with another project that will force him to learn it directly.

I think they are doing well. Far better than they used to be. Going dairy free has helped Middle Child immensely. The sitter we had today was concerned about Middle Child´s sleep, as he has never slept well in his life until the past six months. She brought over some essential oils that are supposed to calm and help with sleep, and he loves them. I had to argue with him patiently and logically until he would release the little jar and put it on a table next to his bed. He wanted to sleep with it in his hand so he could smell it. He said thank you immediately, too. He usually does not say thank you when he gets a gift, he often says he does not want it or acts disappointed. We have been practicing how to receive gifts, but this was spontaneous. He was really pleased. Such a lovely girl to have as my closest neighbor. I am so lucky.

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Is Your Son In Therapy?

The post Thanksgiving has yielded this, thus far:

Friend:¨Is your son still seeing a therapist?¨

Me:¨Well, I don´t know, what kind of therapist?¨ (My son sees four therapists: skills, social skills, occupational, and psychologist)

Friend:¨One for his OCD?¨

Me:¨He doesn´t have OCD.¨

Friend:¨Then what does he have that makes him not want to sit at a table with mashed potatoes or turkey at it?¨

Me:¨He is autistic.¨

Friend:¨Is the therapist working on that with him?¨

Me:¨Well, no one in our house likes mashed potatoes, so it´s hard to desensitize him to it when he never sees it. There is not much need for it.¨

Friend:¨He was never like this when you first moved here.¨

Me:¨Well, it started when he began hating eggs, and then anything lumpy, smelly, and salty like that. About two years ago.¨

Friend:¨I can see this becoming a real problem for him in the future.¨

Me:¨I am just glad he can go up the stairs by himself.¨ (He couldn´t do that for three years until last month).

 

I never know what to say to people. Having sensory issues can be hell. I am sorry for my son.  He did really well, in my opinion.

 

 

 

 

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