On a Different Page

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One of the downsides to living where we live is that it is difficult to find some kinds of medical care for The Boy. Medicaid covers quite a bit, and I am so, so grateful. But not all providers take Medicaid. There is basically one dentist we can go to, who is awesome – Thank heavens! And I have found exactly two counselors for therapy, both a bit of a drive from home.

Since one of The Boy’s major anxieties deals with absences from school (usually other students and teachers, because he never misses school), we eventually settled with the one who offered evening appointments, because missing school when you are anxious about absences is not an option.

The problem is, this counselor claims to have experience with kids on the spectrum, but I’m beginning to have my doubts. She told me last night that her brother has ASD, and I immediately thought of my ex-husband who knew he would be a great dad because his sister had 10 kids (at the time)… correlation not causation.

Red flag #1: She used the word “coddle” when asking if I could have “put my foot down” in the following situation. Grammy, Poppy, The Boy and I were on a long weekend getaway. Our hotel had spotty WiFi that The Boy had difficulty accessing at all. A meltdown was brewing, so we checked out and went to a different hotel. According to the counselor, she thought that I was “coddling” The Boy, and wondered what would have happened if I had “put my foot down.” I looked at her and said, “Most assuredly a meltdown that could have included a violent rage, possibly involving other patrons and property of the hotel.” No WiFi = not an option, and I don’t think there would be too many autism families who would disagree with me.

Red flag #2: She continues to ask open-ended questions. For example, last night, she was pulling cards from a “thoughts-and-feelings” game that you would only find in a counseling office, and gave one to The Boy who was reading them aloud. “What is the worst thing that ever happened to you?” I get that this is commonplace in counseling. Treating patients with autism may require a little more finesse and effort on the part of the counselor to get at what the kid is thinking without him parroting back whatever you said – I’m sure it can be done. Asking him to answer that question? SMH

There have been more, but I think you catch my drift with these two examples. I’ve decided to continue with her because A) there is literally no one else, and B) she doesn’t appear to be doing him any harm, yet. He likes her, and I think he enjoys having another outlet. But I’ll be monitoring the situation closely. She was headed in a very wrong direction regarding something else last night, and if I begin to feel uncomfortable, I will pull him, and we will continue our search anew, possibly driving further to see someone with weekend appointments if such a unicorn exists.

Suffice it to say that access does not equate with quality care, and I wish for the sake of our kids that we Americans cared more.

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It’s Been a Struggle – Update

Hey, there, friends. Long time no write on my part. I’m sorry about that. Between the election, NaNoWriMo, and some other stuff going on in our lives, my head has been swimming. I did pre-write some posts and schedule them, but not as many as I would have liked, so I’m checking in with you all today.

  • I woke up at about 3am this morning with the weight of the world on my mind. This has happened a lot since November 9. As I said in my last post, I’m very worried about The Boy’s future, more than I have ever been. His medical coverage is at risk, and that would affect us emotionally and financially. I don’t expect any progress at the national level in terms of increased programs for adults on the spectrum, either. Maybe this do-nothing congress that has been virtually re-elected will surprise me, but I doubt it will be in a good way.
  • The Boy has been struggling with some violence during his meltdowns this year, and I am investigating how we can best help him through this. We may be switching doctor’s offices, we may be switching medications (big yikes), and we may be looking into some therapy for him. It depends on what his insurance will cover. But he needs some help dealing with his anger (thanks a lot, puberty), and I’m at the bottom of my toolbox with nothing left.
  • I get my first Thanksgiving mini-vacation this year since 2012. Every other year in between, I had to work on some portion of the days surrounding the holiday. Starting tomorrow at lunchtime, I am off until Monday, and man,will that feel weird. Good weird, though. ūüôā
  • Then The Boy’s birthday is right around the corner. He’ll be 15. There goes my head, swimming again…
  • And the ex reached out post-election with an eloquent text saying he knew he had neglected his son and wanted to be a regular part in his life, promising to call every Sunday. That lasted exactly one Sunday, but I suppose his heart is in the right place. The Boy will be heading to his dad’s for Christmas, and I will miss him desperately.

So, my head continues to swim, which is better than sinking, I guess. I wanted to check in with you folks. It seems like it has been forever.

I wish you all a wonderful Thanksgiving. ‚̧

CHIP: It needs to be on your radar

CHIP stands for Child Health Insurance Program and is a federal program administered by each state, and funded by both federal and state governments. ¬†Sometimes it goes by a different name, but essentially it is for children in families who don’t qualify for Medicaid, but still are low income enough to struggle paying for health insurance for their child. ¬†It came into existence before the ACA was passed, but it continues to exist because it is a widely popular program that provides a needed service to many, many families.

Through the ACA, the terms of CHIP eligibility were extended through 2019, but the funding was not.  Funding expires for the current incarnation of CHIP through this September.

Here’s why it matters. ¬†If funding is not extended, many, many children will lose their healthcare. ¬†The Boy included.

The other night, I happened to click on an article on Facebook, that happened to include the information above, and left me upset and worried. ¬†Why hadn’t I heard anything about this? ¬†Shouldn’t this be national news? ¬†What the hell is going on?

I did a little more research, and found that it will most likely receive extended funding, but no one knows for how long.  The problem is that some want it replaced with plans offered by the health exchanges.  I can tell you that this would place healthcare on the other side of affordable for our family, because our state neither expanded medicaid, nor started their own exchange.  As a result, there is one company providing healthcare plans in the my state (through the federal exchange), and therefore they can set whatever rates they want Рthere is no competition, which was the whole point of the ACA.  The ACA is perverted here, and therefore, we are not being served the way we should be by this law.

There are many people who think families should have a choice between an ACA plan and CHIP, and there are others who think having CHIP and the ACA separate is just fine.  Needless to say, there will probably be a great deal of debate on September 30th of this year.

I wonder if we will hear anything about it?

I wonder if it will be used as a bargaining chip (no pun intended) for something else?

I wonder, and I worry. ¬†CHIP gives me piece of mind about my son’s healthcare, and I would really prefer to have an educated public and a compassionate legislative body making decisions about its future.

Children's Health Insurance Program