I'm not a fan of long blog posts, but I felt the need to give some backstory to the journey my family is on. This first post more of a personal biography. The future posts will have to do with PIE and how we work with the community.
We walked in to the house fresh from the airport. My friend Ellie and her family had volunteered to stay at the house and take care of our 4 and 2 year old. My husband and I had taken our new baby on a weekend trip (our first away trip in 4 years). "I think Alex is Autistic." Ellie said. "My stepbrother stopped by with his girlfriend. She works with Autistic kids and she is pretty sure Alex has Autism."
I split into two pieces right there. One part felt paralyzed, it's my default response when I'm terrified, 'if I stay very still' I think, 'maybe this will all go away'. The other part of me felt manic, 'FIGURE THIS OUT NOW'. I only have 2 real memories of that time, crying as I obsessively dug through the internet and my husband going into the back yard to dig a hole in the garden. 'What the hell is he doing out there?' I remember thinking, our kid might have Autism. I understand it now. Shock and grief take control in different ways.
The next 6 months was all adrenalin and mania. Alex didn't sleep, kids with autism don't. If we got 3 hours os straight sleep a night we were lucky. My girls were folded into this chaos, they would wake up ready for the day to parents that felt like they were hanging on by a string. Hide your panic mom, hide your fear, try not to let the guilt turn into self hatred. There was so much guilt. I'd spend time with my girls and watch Alex out of the corner of my eye. I try to suppress the panic that I'm ignoring Alex, that I'm letting Alex 'stim" that I'm reinforcing his Autism. I try to focus on Alex and the girls come running to play with us. I have no idea how to fold a 4 year old and a toddler into theraputic play. It's a no win situation where someone gets pushed to the side. I feel like a failure.
Alex started Early Intervention at 3. I call these the 'There is a cure' years. Everything I read was laced with the idea that if I worked hard enough, tried enough therapies or found the 'right' therapy a cure was possible. I have a hard time writing about this time. It feels like we were in a war zone. Put your underweight, picky eater on a special diet. Torture your son and yourself as he refuses everything your offer him. Supplements are suggested but his gag reflex prevents him from taking them, obsess with where and how you can hide them in their food? Force them down his throat? Am I torturing him? Am I saying NO to a cure if I don't? When the therapist comes and asks 'how is he today?' realize you don't have an answer. "I gave him the B12 at 11am so he might be jumpy, but he also didn't sleep last night so he might be exhausted, he also didn't really eat today so he might just be hungry,,,,, " and don't forget he has Autism, sensory processing issues, can't express himself and is 4. I want to scream 'I have no clue how he's doing! ' but I will fake calm and give you an answer that makes me seem like I have it together.
We did two years of Early Intervention. Looking back at myself, I see someone that was paralyzed by panic. I wanted to put all my faith into the professionals. I wanted to believe that they could fix this. I was submissive, I thanked everyone, I never thought to question something that seemed wrong, I was the perfect team player. I was also in full panic mode.
In 2001 I decided to try and take some control. I hired an Autism Programmer recommended by a teacher. I officially joined the ABA club. Applied Behavioral Analysis was the only therapy with that had solid results behind it.
Alex's Programmer had worked at an local Autism School that had recently closed. She was my first exposure to programming. Maybe this is the answer, I thought.
I threw myself in. We need therapists to run the programs? OK, I'll put signs up at the local colleges, interview and hire some. We need to train them? OK, we will do a training at the house this weekend. We need someone to schedule hours, keep the data sheets organized, make new teaching materials, OK OK OK. I began what I call my undergrad studies in programming.
Anyone that has had an in home program knows it's like running a small business that includes your family. Privacy? Forget it, you will have virtual strangers in your house every day. Everyones issues are your issues. The line between personal and professional get blurred. When you hire a programmer it's an odd relationship, are you their boss or are you their client? You need them desperately and they know it. A year in I had hired a few therapists recommended by my Programmer. Things were going well, until they weren't. The personal issues in the therapists lives got complicated in a way I didn't understand and honestly wasn't interested in knowing. One day I got a call that my Programmer and her lead therapist were quitting, the others soon followed. I had put all my eggs in this basket and now it had fallen apart. I woke up one morning to find Alex's program gutted.
I needed to regroup. I needed a lot of things.
Paxil kept me out of the abyss. I looked around and took stock of what was working and what wasn't. I realized I needed more control over what was happening in my life . My girls were in grade school and I needed to carve out more time for them, spend some kind of meaningful time with my husband, try to have some kind of life for myself. I now had opinions about how Alex learned, and I needed to listen to my opinions. It was time to be Alex's advocate. My greatest guilt is that several times I allowed therapists, in my home, to be borderline aggressive towards my kid. It makes me nauseous to say this. I was so concerned with making sure everything was working that I sacrificed advocating for my kid. I would not make that mistake again.
I felt too burned to hire another programmer, I took the job over myself. It seemed crazy but being able to control my environment offered me a peace I needed. I'd been managing my kids program for the last two years so I had some experience about what to do. I gathered my checklists and materials, started going to conferences, looked at what was going on and jumped in.
My goal was to build a program that held Alex at the center. Alex would feel like he had some level of control. This was not going to be focused on data collection or hitting targets as quickly as possible. Alex would drive the pace of the program and he would feel like he was being seen and heard.
I hired new therapists. The goal was relationship building first, skill building second. New therapists spent weeks just hanging out, getting to know Alex. If they didn't seem to click I let the therapist go. Programs were reactive to Alex's sensory state. If he was having a rough day (or week or months) I modified the programs immediately. Teaching Alex went hand in hand with relationship building.
By 3rd grade I had two therapists, Jennifer Kapnek and Jen C. Alex's home program was 1/2 academics and 1/2 public skill building. Jen C. supported Alex's academics. Jennifer Kapnek spent a lot of time taking Alex into the community working on social skills. They became familiar with every video store in the city of Portland, they went to every grocery store, Target, Walgreens in our neighborhood. This started an ongoing conversation between Jennifer and I about independence and motivation. We began to notice a small shift in Alex's response when we pulled back on our support. He seemed motivated.
Fast forward to 2009. The vending machine landed in our lap at school and the jobs program began. The success we had pushed us to look for more jobs. The jobs pushed us into a discussion about sharing what were doing. Today we launch the website to show what and how are making this happen.
It's been a long road. Were still on it. On a good day I shine with pride at where Alex stands today. On a bad day the fear and anxiety is almost crippling. There are more good days than bad. I hold on the the belief that the bad days will continue to shrink in number.