The past year has led to a long time from blogging. Last Fall I began applying to PhD programs in English and one in Education. I was wait-listed by the University of Tennessee and was wanted for the program, but the person in front of me accepted. In the end I was waiting on a program in Canada and the one I ended up accepting in South Carolina. I ended up telling the Canadian school that I had accepted the local program. this allowed me to continue teaching in my field and attend doctoral classes. I also started my program in the Summer session, so I got started in an earlier cohort.
Right after I was accepted and the state high stakes testing began, we got a call from my son’s school. He had a breakdown like ones we only see at home. He ended up threatening to kill a teacher and then indicated that he would blow up the school. This then led to him threatening to kill himself. he was suspended from school and we were told he could not return until he underwent a mental health evaluation with the local psychiatric services associated with the school. Mind you, our son already has a psychiatrist, psychologist/behavioral specialist. He’s been through numerous evaluations, occupational therapy, auditory tests, and behavioral therapy — none of which the school would qualify him for receiving services because he just didn’t test on a high enough scale for their determination. We have paid everything out of pocket. At that time we had an official diagnosis of ADHD, Oppositional Defiance Disorder, Writing Graphomotor, and Auditory/sensory Processing disorder…due to these official diagnosis not being determined by county/school agency we barely got an Individualized Education Plan in place for him. It took us years to get that in order. Now he was deemed a behavioral issue for his school — a school district that determined in 1st grade and Kindergarten he was too smart to qualify as needing services.
Right before school started the next year we saw extreme changes in his behavior. He took a downhill slide into depression and anger. He is now 11 years old and about the start middle school. As a middle school English teacher, I experience every day the struggles my students face from their peers. The bullying and attitudes and lack of acceptance is heartbreaking for these teenagers who are still children but want to grow up so fast. My son is no different, yet his depression and rage undermined him and he fell into despair. He threatened to commit suicide. I couldn’t bare the possibility that he was possibly serious and that I could lose my son, so we did the hardest thing we have ever done and took him to the hospital to have him admitted to a psychiatric ward for another evaluation. That was a long hard 2 weeks. I cried when I was home feeling I had let my son down, but at the same time knew my youngest needed to know what a life without his brother’s rage and violence should be like. We were all sad and cried together. In addition, we knew our child was safe and getting treatment. The word from his psychiatrist was that he was probably bipolar, which my dad suffered from.
Once he did go through evaluations, the therapists at the hospital and then at the outpatient center began suggesting autism. I wanted to scream at the top of my lungs. I expressed my concerns about autism when he was 1-2 years old because of how he played with his toys and acted around other children. I was treated like the mom who just wanted her healthy child to be sick or have difficulty with something. Sure, my young son wasn’t pervasively ill, but my instincts told me things weren’t normal and being a mom of a child who would have 1-2 hour long meltdowns, bruises on her arms and legs from her child biting and hitting her in rage, get head-butted on a daily basis, and various other incidents was not what other moms dealt with from their toddlers. I realized this was the case when our second child was born and he did none of these things during a tantrum.
So, autism… guess what? We have amazing health insurance that covers Applied Behavior Analysis therapy for children up to age 6. Well, we tried getting him diagnosed before age 6 and were denied, and what about the kids that turn 7? Do they all of a sudden not have autism or are considered hopeless after age 7? But we have been told ABA therapy is the best thing for him. We have found that this diagnosis is the cause of his bowel issues and now he wears a protective pad every day to prevent accidents and to stay hygienic. The social workers through our insurance state that they’ve never seen scores as high as his in their autism evaluations, and that we should call 911 and hospitalize him when he acts out. We can’t see how this is a solution, when ten minutes later he is laughing and playing with pure happiness. I wonder every day if his is both autistic and psychotic at once, which has made a clear diagnosis and effective treatment impossible. To add to this, his symptoms have been creeping into his school life, which before seemed to be controlled at school by the medications he takes. His life, our youngest son’s life, and our lives/marriage have been negatively affected by this disorder.
I wish I could say he just views life through a different lens and that he’s so sweet and misunderstood. No, our son takes any reason to manipulate the situation with a firm grip and barrels ahead with the force of a rodeo bull. He yells in public when we tell him he can’t get a toy, he fights us and attempts to hit us in public when we stick to our answer, he runs away in the store and scares other families when he rages. He demands anything and everything of us and creates a scene when he does not get his way. I try to lure him out of his rage and redirect him, which is instinct as a teacher. My husband attempts to barter with him, which makes the manipulation continue. But I understand why my husband handles him in this way, the man hates conflict and this is much harder on him. Just this evening, the Target shopping trip before getting a Christmas tree resulted in a tantrum over not getting a toy. He refused to follow us, ran away back to the toys, and I heard my husband and son in the distance of the store. As I approached them, he child hit his father in rage over the lack of a toy. They were waiting on me at the register. Once in line the child ran off again. I went to get him. I told him he lost his computer but that if he got up I would buy him a coffee. Sometimes the coffee calms him down. He got up but was mouthy the whole way to the front. I had the running mantra in my head reminding myself that the child was walking with me to front as I asked him to. He was in compliance.
We got the tree then off to dinner. The boys were insistent on where we went. When we walked in and were seated, the hostess rolled her eyes at us. I cannot express how many times this happens to us. We are those people who don’t control our children to so many in the world. They have no idea that when an autistic child is excited about drawing on a chalkboard and think the cool stools that look like hamburgers are things he doesn’t want to give up is unruly, what they are seeing is pure happiness and joy. But happiness and joy from a child with autism is deemed as misbehavior because their excitement is loud and vivacious. Dinner was a disaster, and I know our server was confused. She did nothing wrong and I believe she began to see our calm and quiet struggle with our son who ordered a salad but didn’t want it on a rectangular plate. He obsessed over needing it in a bowl so he could mix it all together. She brought him a small bowl and I put a small portion in the bowl. Then he told me he didn’t like the salad. I felt defeated after I dispersed all the ingredients equally while my food got cold, and convinced our server to find a bowl, only to be told it was all a waste. I truly believe he plays games of power and control just to hurt us. In a blink of an eye he’ll just move on to the next thing. If I had told him to deal with it the next outburst would have occurred. Dinner was defeated before we even got our food.
Having a child like this is hard. Feeling defeated by the insurance company, doctors who ignored your concerns, and by the child you are fighting so hard for is impossible.