Max was diagnosed with autism, anxiety, and ADHD in May of this year.
It all began in 2007 when he was born. Well, in 2006, really. I was the office manager for an architecture firm in Seattle, working full time while my husband finished up graduate school. I was 31 and I really wanted to have a baby. We talked a lot about it on a long trip to the Greek Islands and two months later I became pregnant with Max. We were happy and excited and I had a normal pregnancy and delivery.
We noticed right away though that Max was very sensitive to noises. Shawn sneezing, the tearing of tin foil or packing tape, the noise of the vacuum cleaner or popcorn popper. He was hard to get to sleep and woke often. When he was awake he wanted to nurse every 45 minutes. He needed a routine of three naps a day or he kind of fell apart. We thought this was what having a baby was like. He learned to walk at ten months and all of the verbal milestones were met. I noticed at a year and a half he was different from other toddlers, in how he played, and that transitions were more difficult for him than most children. I didn't think much of it though, he was my first baby. Fast forward to age two: he stopped napping at the tender age of two and a quarter. At age three, it was very hard to get his pacifier away from him. At age four he told me he wanted to attend a dance school. I enrolled him in one, two mornings a week. He just sat in a chair off to the side, refusing to participate in any dance. Only in craft and snack. After two months the teacher wrote me a kind letter, suggesting that he might be in the autism spectrum. I burst into tears and withdrew him from the school. I enrolled him in a traditional pre-k program and he seemed to do pretty well, but the social difficulty was there, and his teacher suggested he may be somewhere on the spectrum.
I started to realize that his sister, two years his junior, didn't have any of these issues.
His pediatrician had never noticed it and I wasn't sure what to do about it, and Shawn didn't think he was on the spectrum, so we just continued on in parenting the best way that we could. But we were struggling. Starting at age one Max would only poop once a week. This continued until he was five, when Shawn took a full week off of work and we spent over $100 on supplements to help Max's body. He'd built up an immunity to miralax and exlax. I felt alone and awkward in social situations. Max was different. I didn't know how he was different, he just was. I felt that I was an inferior mother and wasn't an effective parent. I tried to make everything perfect after growing up with a physicialy, verbally, and emotionally abusive mother. I burned myself out and ended up as a cross and worn out mother, and felt worse about myself. I was impatient with Max and Shawn, and our then toddler daughter. We were strapped for cash so we hired a nanny so that I could work half time. I paid her under the table and made $4 an hour after paying her. Last week Max told me she used to shut him in his dark closet so he could "calm down".
At ages three and four Max was very active, and constantly taking toys apart. They would end up broken and not able to be put back together. I wondered why he didn't play with toys the way other children did. I was worn out and cross and not a very patient or understanding mother during those years. At age five things seemed to be getting better. I just assumed he would go to public kindergarten. In the spring of 2012 we decided to buy a house in Portland. House prices were great, interest rates were low, Shawn could bring his job with us and work from home. The plan was for me to work three or four days a week at an office job. We found a house and moved down here, full of optimism.
Kindergarten seemed to start off ok, but Max refused to pee at school. Each day, Shawn met him at the school so he could pee and a few days a week he attended after school care. In the first few weeks, though, his teacher suggested an IEP and an aide coming into help Max in class. I didn't understand what this was and foolishly turned it down. At the time I wanted to give him the chance to acclimate to kindergarten on his own. I didn't understand he needed extra help. The school year ended ok, but we ran into another summer of day camps not working out. Max didn't want to be there and acted out, or refused to attend. Another summer of losing tuition money for camps and making it hard for us to work. We were frustrated with him and did not realize that his anxiety, ADHD and autism were the root of his behavior. We bumbled through first grade, by the spring time he was refusing to attend school. He would push is bed in front of his door so I couldn't get into his room. I couldn't get him to school or get to work. I would cry outside of his door, one minute begging him to go to school, the next minute seething with frustration that I couldn't get to work on time, or at all. One day he threw large rocks at me outside of his school when I tried to get him inside the building. I finally spent a day observing in his classroom and he self described as a lump of dried play-doh. Sitting in a desk cranking out meaningless worksheets was not working for him. The cafeteria was loud and chaotic and he stood alone at recess. Parents I only casually knew were asking me if we had looked at other school options for him. He had tested as talented and gifted in math, our local school had no resources for TAG classes.
I bounced through part time office jobs trying to find the right fit. Nothing lasted too long due to low pay or long commutes, and needing to be there for Max. He needed to come home after school and be home in the summer.
In November of 2013 Shawn was laid off. It was devastating and we lost our footing financially. For sixteen long months Shawn was un or underemployed. I tried my hand working full time as an executive assistant (a job I realized I did not enjoy) and I was laid off in February. That month we were both out of work and things were falling apart fast. We knew we wanted Max to have neurological testing. A therapist had suggested it in the summer of 2014 when he diagnosed him with anxiety. We were buying private insurance through the exchange that did not cover this testing, or any occupational therapy we had learned he needed.
In the summer of 2014 we started occupational therapy and Max was diagnosed with a sensory processing disorder. OT was helping greatly, but private insurance would not cover it. We tried bi-weekly sessions, paying cash but could not afford it. We reluctantly quit going. Over drinks with a friend one night I heard about a private Montessori school. I was sure we could not afford it, but I went to visit. I knew right away it would be a better fit for Max than public school. I filled out financial aid paperwork asking for a 75% scholarship. My prayers were answered and our request was granted. We made the very painful decision to withdraw our daughter from her amazing preschool daycare so that we could use that money to pay for Max's school. Due to our financial situation, Alice qualified to attend our neighborhood head start pre-k. It was a good school year, Max did much better and Alice grew to enjoy her school.
But the bumps were still there. Max continued to have social difficulty and be disruptive in class. We knew we needed to look into neurological testing but it was out of our reach.
In March Shawn was offered a job at a local tech company. We would have benefits his first day on the job, we were ecstatic. I spent a lot of time on the phone getting a referral for Max to have testing. Shawn and I then met with a very nice developmental pediatrician. Even while I was telling her about Max, I felt like an inferior mother. All the stories of the not pooping for years, the refusal to leave the house, the insistence on only wearing skinny jeans. The rigid rules he made for himself. The times that he would rock his body back and forth and hit his head. The constant noises he made with his mouth. How he didn't reach social cues. How he was easily distracted and would blurt out his thoughts often. A week later I brought him in for two hours of testing. I waited downstairs at the hospital, walking around, wondering if he was cooperating for the testing. He did.
The doctor told me she was diagnosing him with high functioning autism. There is no more aspergers syndrome anymore she said, it's all on the autism spectrum.
We were given a long to do list: recommendations of medication for ADHD, behavioral therapy, a social skills group, genetic testing. I was overwhelmed. The day I found out, I let Max watch tv and I cried in the other room. I cried from relief, sadness, frustration.
It's been two months now. We go to occupational therapy weekly thanks to our new health insurance plan. Max is taking swim lessons, and just started an online mine craft coding camp. He doesn't want to go to talk/play therapy right now so we may let that ride for awhile. I'm learning that all of his rules and rigid behavior aren't him being difficult. He's doing the best he can and these are behaviors I need to work with and accept. Some days are great and he seems neurologically typical, almost. Other days are so hard that I let him watch a movie or obsessively research 3D printer prices while I cry in our room. Friends don't come easy for him and we get few invitations for playdates. He often refuses to come with Alice and I to the park or library. On the weekends often one of us takes Alice out and the other stays home with him.
I turned 40 a month before I got laid off. I guess always thought I'd have some kind of office manager job. But those 8-5 hours don't work. We both cannot work full time. Max needs us. I'm figuring out what I can do mostly part time and mostly from home. I think that something is bookkeeping. I've done it as part of my many office jobs for years. But, I have a degree in technical theatre. Sometimes I'd really like to work as a front of house manager, or something like that. Sometimes, I just want to be out in the world doing other work. Some days, being at work and not writing up schedules for Max, and keeping track of how much screen time he's had, or trying to get him to come to the library so his sister can get her summer reading prize, seems easier. There are days where I cannot leave the house from 8am to 6:30pm because he refuses to go anywhere. So I've signed Alice up for some fun half day camps and he can at least sit in the car while we drop her off and pick her up. Maybe now, because I am learning what he needs I will have more patience and compassion to accept where he is at this tender phase in his life.
He's brilliant, funny, difficult, and lovable. He's Max, and he suffers from autism, anxiety, and ADHD.
