I have gone back and forth in my mind about writing this post. It has nothing and everything to do with our homeschool Journey. The topic is extremely personal. Our journey has barely begun and has already opened me up. I feel raw and exposed most days. As with most things that naw on my mind, it helps me to write it out and to purge the thoughts.
If you follow along with the Blog regularly, or if you follow us on Instagram or Facebook, you may have realized that Squishy is a Challenging Child. The word that comes up most often when I am trying to explain him to others is “more”. Just more of everything, the good, the amazing, and the not so great. It can be overwhelming. Last year I decided we needed to seek help navigating his more-ness.
It was late spring and we were over at my dad’s house having Sunday dinner, like we do most Sundays. It gets to be a full house with all of my siblings, their spouses and kids, with a lot of noise and laughter. Squishy usually makes a bee line for the backyard. My dad has an adventure kids Mecca back there. Dirt and mud for days with plenty of tools and things to climb …basically Squishy’s heaven. He is free to be himself there, but it is still a struggle because Squishy is just, well, Squishy. He is different. What some would label a Challenging Child.
That particular Sunday Squishy and his cousins were playing on the swings when he had a severe meltdown. It was a pretty big one, and I was just thankful that no one was hurt. After I had defused the situation, my dad took me aside. He felt he needed to let me know that “my son was out of control”. I honestly don’t remember the full conversation. I remember my vision slowly burning red, then a hotter white, and I remember screaming at my father. Something I have never done in my whole 35 years.I have never been a screamer. Not even in my worst teenage mood. I remember walking out of the room with tears streaking my face and as calmly as possible bundling a non-compliant Squishy out of the house to the car. I remember shaking with a hot rage I had never experienced in my life. And I remember not speaking to my dad for a whole week before he called me to apologize. Even then it took us a long time to mend the damage. He is now one of my biggest allies in our journey.
I was raw that night, and my dad’s words had cut too deep. If you have a challenging child, you know the emotional drain that I’m talking about. It takes everything I have inside to get us back to homeostasis after an episode. Most of my friends comment on my calmness and patience, but that calm takes a toll on my sanity. He was wrong to say the things he said, even though they came from a caring heart. (My dad is not known for his tact) It hurt so much because I knew that something needed to change. I just didn’t know how to help Squishy anymore than I already was. He wasn’t out of my control, as was the insinuation. He had no control on regulating himself.
It hurt so much because I knew that something needed to change. I just didn’t know how to help Squishy anymore than I already was.
I called his pediatrician that week, desperate for some guidance. Squishy was 3 1/2 at the time. It seems like a lifetime ago. I was told that he was developmentally advanced, that his verbal skills were off the charts, he made great eye contact (he doesn’t, he is just extremely good at faking it)…she thought maybe he had a mild case of OCD or something similar. I walked away from that office visit feeling like the worst mom in the world.
She made it seem like it was all in my head. Maybe it was just my parenting style that had driven his friends away. He was a biter and aggressive because I was failing to provide him with-something. I had no idea. She did give me the referrals to get an evaluation for behavioral problems, though, so I had a path to follow.
Only to find out that the referral was to an organization that only works with children that are 5 and older. Another road block, but I was determined at this point. I called EPU (Exceptional Parents Unlimited) and requested an evaluation with them. They sent me out questionnaires right away. Finally someone who was understanding and encouraging. They called me to set up our evaluation after receiving all our paperwork. We were on the right track, unfortunately there was a four-month waiting list just for the initial interview.
It was a long wait, and I continued to read everything I could about Challenging Children. We got outside as much as possible, because nature and dirt calmed him. When he was calm, I could let the tension go a little bit. At the end of the four months things had not gotten better, but they weren’t worse either. We had bad days, but we also had really great days. We had found our tribe at this point and happily went to our Adventure School co-op every Friday. (You can read a little more about that HERE and HERE) It wasn’t until my accident that things started to decline at a rapid pace. Spending 3 months without breathing mountain air was too much for us both. But I’m getting ahead of myself.
Basically he is in a constant state of fight or flight, and he usually chooses fight.
Our initial evaluation was short and painless. She couldn’t find a diagnosis that fit him perfectly, except for sensory integration issues (SPD) and a high anxiety personality. He doesn’t fit nicely into any box. Or I should say, not enough boxes were checked. I haven’t decided if we will be seeking a more concrete diagnosis later on. Since I am homeschooling I can teach to his needs without a label, I just need to figure out what those needs are. Basically Squishy is in a constant state of fight or flight, and he usually chooses fight. She told us to get a recommendation from our pediatrician for Occupational Therapy at our local Children’s hospital (a 6 month wait, yay) and she was recommending a special play based therapy at their center called PCIT to help him regulate his behavior. (Also a six month waiting list)
PCIT stands for Parent Child Interaction Therapy. It’s hard, emotionally draining, and pays off if you do the work. (I will be explaining on this further in upcoming posts) It is different from other child therapies in that it is centered around building a healthy bond between the child and his/her caregiver. PCIT focuses on children between the ages of 3-7. Our therapist explained to me that in that age range the behaviors were not set, we could train his brain to react differently to stressors. After the age of seven cognitive reasoning sets in and the window for this therapy is lost. There are two parts after the initial evaluation with the PCIT therapist. The first part is child led, and the second part is parent directed. All the therapy sessions are between the caregivers and the child. The therapist stays behind a two-way glass mirror and talks to the parent through an ear piece. That part takes some getting used to.
Our psychologist said she had never met a child as stubborn as Squishy.
We finally had our evaluation at the beginning of February. Our psychologist said she had never met a child as stubborn as Squishy. He refused to even leave the waiting room and come back to the evaluation room with us. She couched me through it and I left him with her aid telling him he could come when he was ready. It was one of the hardest moments of my life. You could hear his screams and commands all the way out to the parking lot.
I had always managed these outbursts from him. Even though I knew that these people were not judging me, I was mortified by his behavior. But he did eventually come down the hall….after 45 minutes of failed negotiations. His therapist was very reassuring to me, but I could tell by her words that she was shocked at his persistence. He had nightmares that night, waking up every few hours to reassure himself that I had not left his side. I almost quit before we even really got started.
We are still in our first month, but every week has gotten easier. Our first real session he didn’t want to leave the house, I had to physically football hold him to the car, then into the building (so thankful I am not forced to use crutches anymore). The next week he refused to put on the hand sanitizer simply because he was asked to. Last week he held my hand and walked calmly to the room. At home it is harder, and I have been warned it will get harder still. But he is learning, and so am I.
Welcome to Voices of Special Needs Blog Hop — a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo — from Sensory Processing Disorder to ADHD, from Autism to Dyslexia!