Holy crap. I suck at this blogging/websiting/not being an asshole thing.
That last thing was just more of a self realization...it has zero to do with blogging consistently.
ANYWAY. It's been since August that I wrote something, and, considering I tried being a "published" writer for like a hot minute and got shot down, I think it would be wise to just post my article here so I can at least relive my failure for years to come.
It was a typical afternoon filled with homework and carpool pickup. I have 4 kids, and 3 of them attend public school. Two go to one school close to our home in Utah and another, our 7 year old son on the autism spectrum, attends a public charter school for children with autism and other special needs. The principal is nothing short of amazing. She’s angelic, in my eyes, as she genuinely loves each of her students and knows what it means to be the parent of a child on the spectrum. Her own son has autism, and because of his diagnosis, she decided to go back to school and major in special education, which brings us to where we are today: my son is attending a school where he can be himself. He can meltdown and have anxiety and scratch his butt in the middle of class, and nobody will make fun of him or tell him how weird he is. He isn’t different at his school; he’s just himself, and that is why we send him there. I choose to drive 15 minutes one way to get him there and back each day. I choose the hectic nature of my children’s schedules, despite my own battles with bipolar depression, because I want to give them every opportunity to be the very best version of themselves.
Connor was and always has been my easiest child. People look at me funny when I say that out loud, but it’s truth. He is easy going, affectionate, funny, kind, and has one of the purest souls I’ve ever seen. He has been making us laugh from the moment he came into this world, and ironically his pregnancy, delivery, and postpartum recovery was the easiest. I had felt all along that he was special but I would have no idea just how special for many years. By the time he was two, I knew something was different about my boy. Less than a year later I knew without a doubt that he was somewhere on the spectrum, so I started advocating for him. I got him evaluated and into an early intervention program, then into a special education preschool, kindergarten, and finally the charter school. I’d move heaven and earth for him, though I don’t think he’d notice it- it’s the nature of the beast.
For four years we have gotten by with just the simple evaluation done by our school district. No diagnosis had been needed, that is, until this year. The idea of a diagnosis had crossed my mind, however, my sweet boy seemed to be high functioning and we knew what his triggers were 90% of the time, so we worked around that. I felt confident in my ability as a mother of a child with autism…but that confidence was short lived. In October I met with his two teachers and the principal to discuss his IEP and was slightly surprised to learn that Connor had been needing more and more intervention at school to help him deal with some of his anxieties. It didn’t seem like a huge thing, really, but I left the meeting feeling uneasy for some reason. Call it mother’s intuition, or a sixth sense, but I felt the winds of change starting to pick up ever so slightly. Fast forward a few weeks…homelife had started becoming increasingly stressful for us. Connor was experiencing more meltdowns and more physical outbursts that left my husband and I feeling completely helpless most of the time. Connor is a sensory seeker, and therefore calms down with tight hugs. This has been beneficial in helping us be able to communicate more clearly with Connor, and it worked marvelously…until now.
It’s hit or miss now. Sometimes he needs a tight hug, other times he requires alone time under his weighted blanket, and now we have learned that when he is feeling anxious at school, he goes into their sensory room and sits there for a few minutes in a peaceful environment, using lights and fidgets to work through everything.
First, let me acknowledge how amazing it is that I can say my son attends a school with a sensory room, that is staffed with people who know how to help the students who go there, who love their jobs, despite the demanding nature of it, and are quick to brainstorm with each child/their parents on how to best get through to these amazing souls. I know how blessed we are to have this school, and I do not take it for granted one teeny bit. We are blessed to live in an area where ASD resources feel abundant, at least to me, and we can utilize them easily.
Connor has never had his “issues” (for lack of a better word) spill over into school life. There was a very definitive line drawn in the sand for Connor up until this year that meant he acted differently at school than he would at home. This is pretty typical from what I’ve read, being as home is his “safe” place he can feel most comfortable, BUT I’m noticing more things happening at school now that never happened before. The use of the sensory room is only one example; he’s been having some issues controlling himself where his peers are concerned. Physical altercations have happened, and while I’ve been noticing them a LOT at home, it surprised me to hear it was happening at school as well.
There’s something heart wrenching knowing that your child is struggling and you don’t know how to help, or make it better. Isn’t it my job to kiss the scrapes and bruises, wipe away the tears, reassure them that they are loved?
On this particular day, as I sat in my car watching Connor walk towards me, I could tell something was going to happen. His face seemed strained; his eyes dark. Something had happened, and I braced myself for whatever he would unleash on me within the next few seconds. I steeled myself as the van door opened and he climbed into the car…and within a split second, he was yelling at me, something about recess…inside…no…outside….he was mad and everything was horrible. He became physical and threw his backpack, narrowly missing me, but then went the big heavy coat, and his baby sister’s bare foot was right there in the path of the coat’s zipper. I heard her wailing and knew he’d manage to hurt her in some fashion, and I felt the guilt happen almost immediately. This was MY fault. I wasn’t a good enough mom. I saw this coming. I should have protected the baby. Connor didn’t notice his sister crying, and he seemingly didn’t care; it was there in that split second that it all came to a head for me and I knew something needed to change. In my heart I knew that getting him formally diagnosed by a psychiatrist was where we needed to start. Once he gets the diagnosis, then we can focus on ABA therapy, or medications, or just ANY game plan that wasn’t the current game plan. I cried. The tears were hot and came quickly and fiercely. There was no closing the flood gates. I had to get it all out. Connor continued yelling at me and pounding his fists into his head. I was driving and trying to ask what had happened to make him so angry, and eventually I got the “full” story. You see, they get 2 recesses every day. On this day, someone had decided that one recess should be indoors (for whatever reason) and the other should be outside. Apparently both are outside on normal days, barring any bad weather of course. Connor was taken by surprise and not happy about the idea of an indoor recess. He wanted to be outside. Period. The change in plans made everything HORRIBLE for the rest of the day, according to him.
I cried the entire drive home, while the baby’s tears eventually slowed, and stopped. Ever had a zipper hit the top of your bare foot before? Yeah. It hurts. Poor girl was just an innocent bystander (bysitter?) as she sat strapped into her five point harness blissfully unaware that her brother was approaching our van with rage on his face. I knew, though. I saw it coming. I didn’t know how to stop it. I didn’t like that I didn’t know how to stop it. We need a plan. A new plan that can help us find patience and understanding with Connor as we start to navigate the waters of teenage hormones. Oh God. Hormones. All I kept picturing was me having to tackle a 130 pound 16 year old Connor to the ground because he was physically hurting himself or others. What if it happened in public and people called the cops on him? What if people sent cops to our house after hearing him throw things and scream and yell? Would he overpower me? Did I need to take up CrossFit? All of these things are running through my mind as my precious 7 year old son tried to work through his frustrations. He will keep growing up, getting bigger. What if this isn’t just autism? What if he’s schizophrenic or bipolar like me? He would need medication to help him. Why was I just sitting there waiting around for things to get worse? I needed to act, and act NOW. I felt urgency. I felt anxious. I felt peaceful as I headed in the right direction.
So…here we are. We are on a wait list for his psychological evaluation that should happen sometime early 2017, and in the mean time we keep holding tight. I’ve spent hundreds of dollars this past week gathering supplies for a “calming corner” for him. I’ve started a Pinterest board filled with ideas for sensory overload help. Lights, soft pillows, liquid timers, music, noise canceling headphones…..all of it is my desperate attempt at feeling some semblance of control again. I know deep down I’ll never fully be in control of Connor and his needs, but I aim to make darn sure that I’m doing everything in my power to try and make things as easy as possible for my son. I’ll never stop fighting for him. Ever.
Mama bear is here to stay.
You can do this. You are stronger than you think, even on the worst days when you feel the weight of the entire world on your shoulders; you are a warrior. There are others out there that understand your fears 100% and can be there to lift you up. It’s a beautiful blessing to be a part of something that is bigger than yourself. Keep moving forward, knowing that you are doing a wonderful job no matter how many tears are shed.