Max was born October 13, 2010…three weeks ahead of schedule. Even at birth this child was impatient! He was 8lbs 3oz and was just the cutest thing. He smiled from the day he was born and had the greatest personality. He was in awe of his big brothers and watched their every move. At first I was scared of adding a third child to the mix, but Max was such an easy baby, he really made our family feel more complete.
I started noticing things were off with him when he was about 10 months old. He wasn’t crawling. My other two had this down by 6 months of age. He eventually started crawling when he was close to a year old. Walking didn’t happen until he was close to eighteen months old. He wasn’t talking. He was stimming. A lot. I’d been down this road before with my older two but not like this. It was different.
I took him to a developmental pediatrician who, after two days of lengthy testing, informed me that my son had global developmental delay. He also told me that he was mentally retarded. I was dumbstruck. First, because this doctor was an asshole. Max so clearly had the symptoms of autism yet this guy just kept calling him retarded. And second, he didn’t even take into consideration that my other children were on the spectrum. I promptly got a second opinion, this time taking him to a pediatric neurologist. She knew within five minutes of being with him, that he had autism. Moderate to severe autism, to be exact.
It was a devastating blow. Through the whole process of trying to get him diagnosed, I didn’t actually think about the diagnosis. When she told me, I broke down. Not only did I have another child on the spectrum, but he was severe. I didn’t even know what this meant. I remember each day that my children were diagnosed with autism. But to be honest, Max’s stung the worst. He was so different as a baby that I was convinced that he was going to escape it.
Sometimes, I just look at my little guy and it makes me cry. He’s a beautiful boy. He has an infectious laugh and he loves music. He is also very affectionate, which is not always the case with autistic kids. But I look at him and he looks like a typical five year old. But developmentally, he’s about 12-18 months old. He is mostly nonverbal, but understands. He says about 20 words now, most of them simple such as juice and cookie. But I savor every one. I love hearing his little voice. I rejoice in every victory he makes, no matter how small.
But I worry about him. I worry that he’s not going to progress. That he’s going to be a baby for the rest of his life. That he won’t get to experience things because of his disability. The way he looks right through me and doesn’t respond to his name just hurts my heart. The stares I get from strangers when he’s having a meltdown getting a haircut or stimming in the grocery store, make me sad and angry. I envision that Max has this wall around him, and we just have to find the right tools to tear it down. I often wonder what he thinks about or what the world is like for him. I know it’s not easy. But I wonder if he even realizes it.
Getting help for Max has also been an uphill battle. He goes to school and gets help there, but it’s not enough. My health insurance won’t cover the cost of autism services either, which is the biggest piss off. We have federal health insurance and because there isn’t a federal autism mandate, the insurance company doesn’t have to pay for these therapies. These therapies are very expensive without insurance and sadly, we can’t afford it. I was able to apply for a scholarship for Max to attend a private school for autistic kids for the next school year. My only hope is that this school will be able to give him what he needs and tear down his wall.
Autism has changed my life in a way I never realized it could or would. It has been the source of many tears, breakdowns, victories and struggles. But I keep fighting, because I have to do what is best for my kids. Autism is a part of who they are and they are wonderful, beautiful and amazing. As stressful as being a mom can be, they are my world and I am grateful that I get to be their mom.