When Life - Minds Over Matter

“I never fully grasped the importance of a child’s mental health until I firsthand saw the breakdown of Jack’s during distance learning. And the sad thing was I couldn’t recognize it for what it was until it was over, and I had time to process it. I don’t have the answer for reopening schools, especially one that would please everyone. But if we ever have to transition into virtual learning with him again, mental health trumps academics all day.”

That was from a recent Facebook post of mine which resulted in lots of other Mama’s commenting they too witnessed regression, increased behaviors and the overall mental anguish distance learning in the Spring caused their special needs child. But it also opened the door for quite a few direct messages asking, “What happened with Jack?” “Did we not have a good plan in place?” “Were your teachers and therapists not helpful?”

After much thought, I’ve decided to share his story.

When we left school on a Friday in March of the 2019/2020 school year, no one could have predicted we’d not step foot in the building again. First the plan was we would go back on Monday but close Thursday through the end of the following week because that week would be our Spring Break. But by mid to late weekend, we would end up being closed the entire 2 weeks.

Those 2 weeks turned into 3 and well, you know the rest.

We made the best of those first 2 weeks. I wasn’t too worried about him falling behind at this point. We read, we played math and card games, lots of outdoor time like jumping on the trampoline and swinging. Honestly, the hardest thing at the time was explaining to him that we wouldn’t be taking our annual Spring Break trip to the Smoky Mountains. A tradition he loves and we’ve kept up since he was in kindergarten. At this point his anxiety was starting to spike because I just didn’t know what to tell him anymore. And after days and days of always being “wrong” as to when he would actually get to go back to school, he was showing me in his own way that he didn’t trust what I said anymore. And so his behaviors began.

Let me first be very clear here. We had an awesome distance learning plan. I had educated myself with information from his attorney. I had researched what other schools were doing. I know and understand his rights and paid close attention to the guidance coming down from both the state and federal departments of education. I did all.the.things. He had a wonderful team who worked very hard for him. I just KNEW that we were going to rock this “homeschool” thing. I mean he enjoyed working with me on things before this at home learning became “official” so we should be good! He would have face to face access to a teacher or therapist every day, sometimes twice a day, via different platforms, in order to feel like he was having class or a therapy session. His workload didn’t seem to be too overwhelming. I mean I had color coded folders and everything ya’ll! We were ready!

But as each day ticked by, he was falling apart more and more.

I kept saying over and over to everyone on his team that he just couldn’t, in his mind, separate home and school. We all kept thinking as long as we were consistent, things would get better. Then the screaming started. The endless yelling, mostly my name over and over. The screaming was unbearable and at one point lasted almost 6 hours one day. Then came the aggression.

He has always had aggression and severe anxiety. We have a behavior plan at school, and we have been on medication since the summer after kindergarten. The difference here was that he was aggressive and on edge almost daily. As far as aggression, his behaviors included hitting his younger siblings in the head, hitting, scratching and kicking me, biting me, stabbing himself and me with pencils, throwing objects, breaking things in his room, and banging on the walls (the banging on the walls would go on for long periods of time.)

His anxiety was absolutely out of control. I blame myself for part of it because even though I tried so hard to keep things as consistent as possible, things sometimes would change at the last minute. I felt like he relied on me to be able to assure him of his schedule (which is super comforting to him) but would often be confused and frustrated when things didn’t go as planned. Maybe it was an assignment wasn’t loaded yet, or we had to move the time of a therapy session. There were days where he would repeat the same question hundreds…HUNDREDS (I’ve counted) of times. I would give him the answer and he would immediately repeat his question. Sometimes I would say, “Jack, what do you think? What do you think the answer is?” He would give the correct answer and ask again. I would hear him asking and repeating the answer to himself. This went on almost every day. He bit his nails. His cuticles. But the worst part was he started pulling and scratching the skin off his arms. He would pick his skin until a sore was made and just continue to pick until he bled. I would try so hard to keep them covered but he would rip the bandages off and pull off the scab and start again.

Every day in his therapy sessions, I would be sitting with him either keeping him distracted from his arms or applying pressure so he wouldn’t bleed everywhere. He ruined many shirts during distance learning.

 

Jack's scars from picking and pulling his skin. 

 

I was in such denial and honestly such disbelief by what I was seeing and experiencing that any day that was even remotely “calm,” I would convince myself that things weren’t that bad…maybe it’s just me…tomorrow will be even better I bet… But they weren’t. And often times the situation would be worse than before, but again, we would have one good day and I would convince myself once more that things were okay.

We saw his psychiatrist and made adjustments to his medications. It was only then when I was forced to retell all that had been happening; when I had to actually say out loud what had been going on; when I had to admit that he was indeed a threat or causing harm to himself and others; that he had been hurting himself…did I fully grasp how terrible things were for him and how much of a toll quarantine and distance learning had taken on his mental health.

Once distance learning was over and we started in person instruction for ESY (extended school year) the behaviors improved drastically. He has even made progress on goals we have set for the upcoming school year. I am very proud of him! We still struggle and we still have rough days but nothing like how things were in March through May. I have seen new behaviors and we are working through them, and a lot of behaviors resurfaced that once had been extinguished. I am hopeful that even though school will look a little different this year, that things will continue to improve once we are back in his routine again.

I just want you to know how important your child’s mental health is. I am not new to Autism, meltdowns, anxiety, medications, behavior plans, aggression, or anything related to his diagnoses. I have over a decade of experience in those areas. I am however new to virtual/distance learning, self-harming, and watching my child’s mental health deteriorate.

I missed his warning signs for fear of missing turning in an assignment or a therapy session. I was so sick over his regression academically; I couldn’t see the social/emotional regression right in front of me.

My child doesn’t do social media, Facetime and phone calls with friends, Fortnite with peers, spend the night parties, or anything like that. He still loves toys that he played with when he was 5 years old (he’s 13.) School is his lifeline. His social connection. He loves seeing his friends and saying, “Hi,” playing basketball in the gym with his buddies, singing to everyone in his class and making funny Snapchat pictures with his paraprofessional. He isn’t alone in that many special needs children are the same way.

This isn’t a political post about whether schools should or shouldn’t open this Fall, although I certainly have my opinion on that matter, this is simply a personal experience piece. I felt so alone in our situation. But here’s the thing, you aren’t crazy for feeling super overwhelmed, because I know I was. You aren’t imagining things when you are thinking something, “just isn’t right with my child,” because I know I thought that. It isn’t your fault that he/she didn’t or can’t tolerate virtual learning, because I certainly blamed myself. It’s okay to ask for help. It’s okay to tell your IEP team that something isn’t working or request additional help/services (know your child’s rights!) It’s okay to take a break.

Because if their mental health is not at the forefront than nothing else will be effective.

 

Love and lemons,

1 comment

Denise

Thank you for such an eloquent and candid sharing.

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