The Proverbial Straw

82e75e198699c5bbd6adfca282ff330eThere are four sides to autism. At least that’s the way I see it.

There is Cooper. He has autism.

Then there is me and his dad and his brother and family. We have different expectations and emotions about Cooper.

There is the rest of the world and how they perceive Cooper. There are teachers and aids and therapists and insurance companies. Doctors, financial aid workers. You name it. Cooper has it.

And then there is the business side.

Yesterday, while working an 8 hour day, I answered 4 phone calls, received 2 voicemail, 7 emails, and 3 texts about Cooper’s care. I made calls to find out the price of diapers from a medical supplies company. I met with my insurance provider about deductibles. I inquired about cooper’s preexisting condition with Fraser. I spoke with his Occupational Therapist about getting swimming lessons covered by the state. I printed off pay stubs. I filled out 12 pieces of paperwork. I signed my name a dozen times. I debated with a financial aid worker about getting paid for Cooper’s care and determined that he needs to be set up with a tax id number…and yes, we need workman’s comp. (what the F) And lastly, I called to find out the price of private swimming lessons and seriously considered starting my own pool because the price they are charging is INSANE. That was my Thursday. And I knew I was meeting with his new social worker at five at my house.

Head down.

That’s the business side of it. Cooper’s care is insanely expensive. No one could afford it. So that involves the county. And the state. And health insurance. Add in paperwork, evaluations, politics, judgments, shame.

Again, that’s the business side.

There is no emotion in this side. There can’t be.

I had to remove it. Otherwise I wouldn’t be able to handle it. Can you imagine if I cried or felt hurt every time we did an evaluation? Or when Cooper receives a label? I used to shrink down to nothing every single time his delays was discussed. No, he can’t talk. Yes, he has zero self-care. No, he isn’t violent. Yes, I understand he might get violent as he gets older. It goes on.

I removed the emotion completely.

Cooper’s care is treated like a job. His dad and I manage his schedule, his bills, his contacts.

I did this because I had too. I did this because Cooper needs these things to happen in order for his life to be ran as smoothly as possible. And emotion got in the way of that. I was too sad all the time. I couldn’t get through it like that.

The business side has been starting to build again. Let me preface by saying this is a good thing. Soon we will be getting a grant every month to help with things like diapers, wipes, prescriptions, door locks, id bracelets, private swimming lessons. This is amazing. And I am so thankful. But, the paperwork is effing insane. I feel like the government does less paperwork than I do.

Cooper is also going to get a communication device. Sigh. The one thing I said I never wanted my child to use. I was and am scared of it. Of what it signifies. Of being labeled. Or giving up. Of having ‘that kid.’ Of adding yet another service. Another piece to the pie. But his therapists who love him told me it’s a great thing. And I trust them 100%.

So, I’ve been feeling the stress lately. It’s been building.

And then I got a text from a woman. She told me she was from Talk To Me Technologies and she wanted me to pick out the skin for Cooper’s new ipad. She was excited to meet with us and there was just a small amount of paperwork to do and so on. And she ended with…Ask Cooper which of these skins he would like on his ipad?

I stared at the picture. There were 20 or so different options. Super heroes, sports, activities, etc.

This was the proverbial straw that broke the camel’s back.

This brought the emotion back to it. It made Cooper a little boy again. And it reminded me of why we are doing all of this. Cooper is autistic. And he doesn’t talk.

Cooper doesn’t care about any of those things. There is no point in asking. He won’t understand. And he won’t care.

I went to a private office and I seriously laid my head on the cold table.

And the phone rang…it was his new financial aid worker. I ignored it. She followed up with an email….don’t forget to bring tax returns and Cooper’s official diagnosis paperwork to our meeting tomorrow.

Cooper is a little boy. My little boy. And we do all of these things for him and we love him and we are fighting. Always fighting and working towards the best possible outcomes for Cooper.

And then this text.

Ask him to pick out his favorite skin for his new iPad?

Why was this so hard for me? That damn old proverbial straw. Making this about emotion. And a real boy.

I went through the quick roller coaster as I laid there. I can’t do this anymore….blah, blah, blah…I work full time…..what does it matter….I give up….I need help….sigh….I am quitting it all….F it…what’s the point…this kid doesn’t even care…I need a nap…and a drink….and a vacation….what if I run away…I have to quit my job…but then how do I have insurance?

I sat there for 10 minutes or so and just thought through the whole process.

And then I sat up, looked at the picture, picked the skin that had trains on it, text the woman back and went back to work.

And that was that.

There is very little time for parent meltdowns in this journey.

It’s kind of sad really. That a diagnosis does and requires and needs all this. It removes the human factor out of it.

Having a special needs kid is hard enough. Do we really have to become robots to get through it?

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12 thoughts on “The Proverbial Straw

  1. We call our son the minister of everything in our house but mostly Ministers of Finance , it’s very expensive we have had to look for cheaper versions of everything lol , I never thought I would be buying diapers for a 4 year old but I have got shops phoning me to tell me there is a sale .

  2. The ipad will be great. I think because I am an SLP that I bought Landon his own ipad and had communication devices on there before he was 2.5 Now my little one is 2.5 and uses the ipad also… that is a good thing.. 20 years ago, this would not be so acceptable. It is hard, and I spend a lot of time programming it, but you gotta do what you gotta do 🙂

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  4. Hugs for having to wear so many hats and feeling worn out. Up here in Canada it’s lots of wait lists for our kiddos and trying to get schools to do more so we can do more privately. Which for us is out of pocket because insurance only covers a small percentage up here…yikes.

    But the thing I want to celebrate for you is IPAD!! Do not be afraid of this!!! It does not mean he won’t talk. It means he will now build language skills which will move to literacy. Not kidding!!! It’s hard to imagine Cooper doing all of this but this is a good thing. I spend a lot of time assistant ping my sons teachers showing thing how the iPad can help ASD kids FULLY access the curriculum. iPads sync with Smartboards that are in most classrooms instead of chalkboards. The ASD kids know how to do things with tech then their peers in the end because they learn it at a young age. So begin here with him with it being a speech augmentation device then down the road you might have to deal with the next struggle…..he will want to try and say words then touch to speak and the device becomes a tool for you to understand.

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