My Special Needs Son Update on Life, School, Mental Illness

update

It’s been a long time since I posted here. Life has been going at such a fast pace. I have had to let a lot fall by the wayside. For those of you subscribing to my newsletter I have also let that go. I am trying to keep up to date on Instagram. I have been posting journal prompts, bujo lists and other things to that site. So be sure to follow me at thenorthernstarblog to keep up to date. Instagram is the most used of all my social media and writing sections.

Lets see. I left off in April of 2021 after we were told that our son would no longer be welcome at his old school. It was devastating to both our son and us. It was due to his panic attacks. Funny since they are supposed to be a school with kids with anxiety. I have noticed that this year they removed that from their website. Covid really did a number on my son. It completely erased two years of progress. Now we are back to square one. The thing about most anxiety disorders is that if you don’t get out and confront them on some level they get worse. Which is what Covid did. E could not get out and go places where there were a lot of people or where he would interact to people. Thus without being continuously exposed to it (places outside of his comfort zone) his fear was not kept in check and expanded unimpeded.

We left off the last update about to go into a phone conversation with the school founder. When the founder started the call, she said she heard we were upset. Then I told here that I wasn’t upset. I was furious! How can one month he be doing great and then a month later he needs to leave? He wasn’t doing anything of a behavioral nature to warrant that. Did his depression/anxiety etc make things difficult for him? Yes. Does he have learning disabilities? Yes, all which the school knew about. You can’t also tell me that there are not others who are more disruptive. There are. But they are related to people in the admin so I guess they aren’t going anywhere.

She said that the school told her that they had communicated to us what was going on. I told her that is 100% not true. Of course, she then said that the administrator wouldn’t lie etc. That they had told her all year what was going on. I told her then she had a different story that what I was given. I said I keep every email ever sent to me by the school. Nothing, in any of these emails would have lead me to believe anything in the last few weeks was going to happen. I double checked even before this meeting. All I would get is Erik is having bad anxiety or has thrown up. You need to come get him. How does that translate into “We don’t want him back?” They knew his throwing up was from nerves, not illness. Anyway, if we had been told that people were concerned about his future at this school we would have handled it very different.

We should have been told that was the opinion of the faculty. We had no idea. We were never given the chance to correct or get him outside help. Once I explained this to the founder she said she understood. I told her she needed a formal process and meeting time when there is concern about a student. I told her about the previous parent teacher conferences over a month ago where we were told everything was alright. I said they needed a form or contract on how things were to be handled. What the problems were etc. Then they needed to check in and evaluate what was going on and if they believe it is needed monthly or weekly. While this will not help us maybe it will help someone else. There are so many things we could have tried. Now we were not going to get that opportunity.

The staff did not take into account his other disabilities and disorders when trying to help him. I mentioned his dyslexia and they looked blankly at me. It was all in the paperwork we submitted. The paperwork they all looked at. Well, he doesn’t have the type of dyslexia where words or backwards or mixed up. His type makes reading comprehension and understanding/spotting underlying themes very difficult. If his performance was being effected then there should have been accommodations made. Then they told me that they had one teacher help Erik exclusively. They didn’t tell us that ever. No, she shouldn’t have to spend her whole time catching Erik up in his other subjects. Again, if we had known we could have brought in outside help.

The founder also suggested that we just work on his mental health and not worry about school. One, that isn’t realistic and two the state would not be happy. Three, he has been in multiple therapies for over three years at that point. What else would he do? So I was so tired and ill that I decided that I would keep Erik home and do online school only. I know the teachers were going to not be happy, but I didn’t care anymore.

I also made a decision to get my son a new neuro-psych evaluation. He had one three years previous. So I called the same psychiatrist and was able to get in right away. So we spent one weekend at her office having Erik get evaluated and compare the two reports. She was going to be able to give us the second report faster as she would use the original report as a guide.

We ran into problems with the occupational therapist we have working with E on his food therapy. We were told they were in our insurance network. It turns out they were not but also are. Yes, you read that right. Apparently they are in for OT but for some reason they are classifying it as mental health and they don’t have them in network for mental health. The therapist says the insurance is changing it, the insurance says the therapist is putting it in wrong. Meanwhile, we are paying a thousand dollars a month. It’s too expensive so we were going to cancel even though he needs this. Finally, I decided to ask the OT to classify it as Autism therapy. Since technically sensory processing is considered part of Autism. Then, maybe insurance would cover it. It worked thankfully. Now we have to try to unravel the mess of the previous charges. This shouldn’t be this hard.

I also made the decision to change therapists for myself. The new therapist I had previously chosen just wasn’t working out. There wasn’t anything she did wrong. I just didn’t feel like I was clicking with her. So I found another one and so far so good. I really need someone to vent to.

We finally found a new school for E. It’s expensive, but it’s our only choice. He will only have to do a few hours a day to see how he handles it. Two classes and one study hall. I have to figure out how to do all the extra classes like art, language etc., but I will do that after Christmas.

Then, we got our results of his second neuro-psych evaluation. The doctor who did both said he had really gotten a lot worse. She says his appearance had changed, his energy level, his attention, his cooperation etc. She said he needs intensive therapy. When I told his anxiety therapist this she suggested putting him in a day treatment program again. The program she mentioned we had looked at before. They wouldn’t take him. She said that was surprising as she knew the Vice President who said they serve children/teens like my son. However, when I called them they would not take him due to the Autism/Anxiety combination. Which is odd considering anxiety is a huge part of Autism. I remember when we originally tried to find him an alternative to hospitalization, the Autism/Anxiety combo was one no one was willing to treat.

He’s been in multiple programs like this. I promised him I would never send him back to one. The therapist said I should consider it, to give myself a break. I never get a break. In those situations it actually makes it harder on me. He gets more upset and stressed. He suffers from severe separation anxiety from me. I am the only one who works with him. My husband tries, but he is at work. When he was last in those places, other children/teens were screaming, yelling and sometimes violent. He isn’t and it upsets him and frightens him. I’m not wasting another year on one of these programs again. I have no faith that any other program is different.

The new school we found for E is a private, one on one school. They are a chain throughout the United States. It’s for kids who cannot attend another school for a variety of reasons. Some kids take classes to catch up, some to finish school early, some are going through treatments for disease and much more. They follow a computer program and sit in a room with it and an instructor as they go through the program. We are going to have E start by doing tutoring in English this summer.

We finally got his final grades for this Freshman year. Here is what he had: Math A, Art B, History C, English C and Science C. I’m not too pleased with those grades but I’m done. Now it’s off to summer school. This summer we are also going to have to do a lot of anxiety challenges.

This concludes updates from last academic year. In the next update, I will let you know how summer went. Also, coming up is this academic year and therapy changes.

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