We are struggling...

This is all so hard to say - hard to put out there into the world.  But in an effort to explain why we've been so self-absorbed, so absent lately - I think the time has come to explain.

The past couple of months have been a really rough time for us.  Around mid-August, Aidan very abruptly began to have symptoms that have only worsened since then.  He started spiking fevers without other signs of being sick – just random fevers that would stay for a couple of days, go away for a few days, and then come back.  He also became excessively sleepy, falling asleep often during the day even though he was still getting plenty of nighttime sleep.  At the same time, he began having headaches and complaining that he was cold during the day, and was throwing up overnight nearly every night.  All of this was very unlike Aidan, but we chalked it up to the likely explanation that he had been catching virus after virus.  After about 3 weeks of this, and just a few days before a much-anticipated trip to visit family, we took Aidan to see his pediatrician, who had some labs done that indicated that his white blood cell count was extremely low.  They told us he wasn’t allowed to leave our house for the next week, until the labs could be repeated and compared.  God, it was a long week.  A week later, the labs showed a lot of improvement, and he was allowed to go back to school – with instructions for us to call immediately if another fever happened.  It was less than a week before his next fever, and he was sent again for labs – showing a lower WBC count than the previous labs, but not low enough to be dangerous.  We sent him back to school.

As all of this was going on, Aidan’s sleepiness was getting more pronounced.  He wasn’t able to make it through his school day without nodding off in a chair or falling deeply asleep on the floor. It was difficult to wake him, and when they did wake him, he became angry and destructive – hitting his teachers and nurse, yelling angrily, and even throwing furniture in the classroom.  This is not our Aidan.  The only explanation he could give us was that he was very tired, and being awake made him angry.

It’s now been nearly 3 months.  Aidan is increasingly angry and violent and destructive.  Nobody knows why.  At this point I think it’s important to mention that all of this began a few weeks before leaving his Pre-K.  I’d like to believe it’s behavioral in response to the big Kindergarten life change, but given that it started well in advance of that change, I don’t think that’s it – or at least, I don’t think it’s the whole story.

It’s clear to us that something is wrong.  This exhaustion came from nowhere.  The radical personality change came with it.  I am heartbroken that whatever this is, is causing him to be unsuccessful at school.  When he is able to attend, and when they are able to keep him awake, he’s barely completing any assignments or interacting with other children, because he’s so miserable and angry.

Care to see what his instructional day looks like?

And it's not just at school, either...  At home, out in the community, at dad's...  Everywhere.

 

Over the past couple of months, a scary new symptom has arisen.  Aidan thinks that he hears voices talking to him that come from inside his body.  Sometimes he thinks it’s a “meanie bug” who is talking to him, laughing at him, and making him make bad choices.  Sometimes, he thinks it’s his heart talking to him, making him do these awful things.  The violent outbursts are becoming even more frequent.  He’s hurting his teachers, the school staff, and his nurse on a daily basis.  I truly don’t know how much worse things can get.

What’s been done so far – the pediatrician ran several sets of labs to check his white blood cell count, and also sent off blood cultures (which didn’t grow anything) because of the fevers.  He’s had an EEG, and MRI, a longer (overnight) EEG, and a sleep study.  Both the EEG and MRI showed nonspecific abnormalities, but nothing that concerned his neurologist enough to move forward with any treatment.  The sleep study showed that he’s having a lot of limb movements, and they’re waking him up.

As I’m sure you can imagine, things at school are not good.  Our school district is absolutely failing him when he needs their support the most.  When this all began, the decision was made to remove him entirely from general education, and place him full time in Autistic Support.  This was an immensely difficult decision for us - we had never even vaguely entertained the thought that Aidan wouldn't succeed in a mainstream classroom.  Almost immediately after that decision was made, the school began to push us for a move out of Autistic Support and into Emotional Support at a different school, due to his behaviors.  I maintained that I’d consider any placement that would help him, but I was not going to be okay (EVER) with removing him from the services that he’s entitled to and desperately needs.  When they finally got someone from Emotional Support out there to see him, they agreed (with me) that AS is the right placement for him.  Immediately upon hearing this, his school moved to reduce his school day.

I nearly lost my mind.  They were already doing nothing whatsoever to work toward reintegrating him into general education, had given up on actually teaching him anything, and were simply assigning staff members to babysit him until the end of the day.  He was being allowed to choose his own schedule full of preferred activities only – they 100% removed all educational demands and let him do whatever he wanted, whenever he wanted.  It is clear to me that a reduction of his school day was nothing but an obvious attempt to make their lives easier and free up their staff.  I’m not going for it.

Nearly three months into the school year, we have yet to see a behaviorally-trained 1:1 assigned to Aidan – although the school knew before he started that this was precisely the intervention that facilitated his success in his last school.  After many requests, we were finally told on Halloween that they were moving forward with obtaining a 1:1 – but nothing has happened yet. In the meantime, Aidan spends almost the entirety of his day secluded in an empty classroom, or - when he's particularly angry and unmanageable - closed in a small padded room on his own.

Where we are now – we’ll need to see a sleep neurologist to figure out the sleep study results.  We will also see developmental pediatrics again next week to discuss bringing him in to see a psychiatrist for a more comprehensive mental and behavioral health evaluation. 

I am so scared for him.  He was such a wonderful student, classmate, and friend – and then this switch flipped.  He’s miserable.  We are miserable.  His school desperately wants to pass him off somewhere – ANYWHERE – else.  He is so tired, and falls asleep during the day so deeply that his nurse and teachers can’t even wake him.

We are investigating absolutely every avenue we can think of. Has something gone horribly wrong in his brain?  Are his medications causing this?  Is this due to a lack of enough restful sleep?  Is there some mental illness at play?  Is this just the next chapter in parenting a child with Autism?  Please, internet friends, if you have ideas - we need them, desperately.