“May you grow up to be righteous
May you grow up to be true
May you always know the truth
And see the lights surrounding you
May you always be courageous
Stand upright and be strong
May you stay forever young
Forever young, forever young
May you stay forever young.” – Bob Dylan, Forever Young
So, technically, this next post should be about the Richmond Marathon. Maybe that will come. Suffice it to say that it was my slowest finish but the best time I’ve ever had during a marathon. It was an honor to run it with Amy. I’m glad she let me come along for the ride.
I want to go down another road for a minute. I want to talk having a child with autism spectrum disorder (ASD). No one wants to find out their child is mentally ill. No one wants to manage psychiatric visits, consider hospitalization, put their 6 year old on psycho-trophic drugs, deal with IEPs, and school administrators who call to complain because your son did “X”, again. Advocating for my son and finding him resources is my third full time job after lawyering and general parenting. It’s the reality of having a special needs kid.
At first glance, Colin looks like a normal 6 year old boy. Underneath, though, he struggles with expressing himself (he also has a major speech impediment), he fears loud noises, crowds, not being able to have eyes on me at all times, the dark, he hates to be touched by people he doesn’t know, he doesn’t like to be cornered, he won’t make eye contact. Something can be fine and he can be enjoying it only to decide the next minute that he needs to leave RIGHT THAT MINUTE. He HATES deviation from a schedule and if you say you’re going to do something, you had better do it. He won’t eat foods of a certain texture or color. He won’t wear certain fabrics. He hates pants and won’t wear a coat. He reacts to his environment the only way he knows how – he melts down, he hits, he runs. Colin has a total flight reaction. If something is freaking him out, he’s gone. This is dangerous, as you can imagine. He also soothes himself with repetition. It can be physical, like repeating the same motion with his hands over and over or it can be verbal, repeating a soothing noise over and over. He will watch the same show over and over on his iPad because it is repetitive. When he is overstimulated, you can’t rationalize with him, you can’t talk him out of it, you can’t make him stop. His disability impairs his ability to learn and he can’t read or write even at a kindergarten level. Anxiety and depression are Colin’s constant state. He is anxious when he has to go somewhere because he doesn’t know what to expect, he is depressed because he thinks he is a failure. He doesn’t really have any friends. He’s 6 and it breaks my heart.
Here are a few examples of ASD in action: I told him we had to stop at Trader Joe’s to buy avocados on the way home from another errand. He said, “We’re just buying avocados, right?”. “Yes”, I replied. Once in the store, I thought I would like some bread to go with the avocados for avocado toast. The bread is directly across from the produce in Trader Joe’s. It doesn’t require walking to a different aisle. When I picked up the avocados and walked over to the bread, Colin wailed “YOU SAID WE WERE ONLY BUYING AVOCADOS”. I said, “Yes and then I remembered we needed bread too, and since its right here, I just picked some up.” He said “But you said we were only buying avocados.” Me: “I did but now we’re buying bread and it’s okay.” Colin: “It’s not okay. You bought bread” and then he proceeded to cry the entire time we were in the checkout line. To a normal child, this would not matter. I have no idea why it mattered to Colin but it certainly did and it was very real. Another example. Colin only likes yellow cheddar cheese. He only likes yellow cheddar cheese in slices or sticks with a cow on the wrapper (thankfully, there are a lot of brands of cheese featuring cows and he can’t read so he doesn’t know they’re really different brands). We know that yellow cheddar cheese and white cheddar cheese in most instances taste pretty much the same but to Colin he simply can’t eat white cheese in stick form. He eats white cheese on his cheese pizza so go figure.
Colin is a pretty awesome kid. He is very loving to his family. He loves us with undying passion and would defend us to his death. He is empathetic. He also reads me like a book and can tell when I am sad or mad or upset. He feels things in his soul. He tells me he loves me 100 times a day. He gives the best hugs and he tells me I am a good mommy. He has a wicked sense of humor. He can build the most elaborate Lego creations from designs in his head. He knows every Pokemon character ever invented and he can tell you all of their statistics off the top of his head despite his inability to read. He is really good at video games. He never, ever forgets anything you tell him and he is extremely observant. His IQ has been tested and he is intelligent – he just can’t get his intelligence out in a traditional way.
There are people who judge me because Colin melts down in public or watches his iPad when we’re in a restaurant. There are family members who say I lack discipline as a mother or I just don’t enforce my way with him. His school administrators, although pretty good, punish him for his reactions to his over-stimulation at school. I have to leave work at least once a week to pick him up (although, last week we made it a whole week and I felt like I had scaled Mt. Everest). This morning, they told me they will likely suspend him because he hit the vice principal yesterday after he was overstimulated because I forgot to administer his medication. These things make me want to take him home and never leave. For me and him and his sister to just stay insulated in our own little world. His sister has ADHD and, once upon a time, I thought that was the hardest parenting gig. Well, the joke’s on me now. The world is unkind to the mentally ill.
No one knows what causes autism or ADHD. Both my children were premature because I had pre-eclampsia. Was that the reason? Colin was my bonus baby at 39 who came 5 years after I stopped fertility treatment. I didn’t know I was pregnant for a while because I was told I needed IVF to conceive. I thought I had the flu and was dying. I had to have an emergency c-section and Colin was 6 weeks early because his heart rate dropped drastically. He spent 3 weeks in the NICU. Some research indicates that children who spent time in the NICU develop autism. Who knows but I can’t help but feel responsible sometimes. Colin takes a lot of psychiatric drugs. They make a huge difference for him and he is able to function, for the most part, at school and out in the world. I’m grateful we have such strong child psychiatry resources in our area.
Why am I telling you all this? Because very few people talk about mental illness openly. No one wants to admit that their child is mentally ill or can’t read at grade level or gets picked up from school for issues at least once per week. Colin’s mental illness is just as real of a disease as diabetes or asthma. If this is you or your child, you are not alone. There is no feeling of being more alone than being the parent of a special needs child. We’re not alone, though. There are a lot of us out here and I’ve found if I talk about it, other mothers talk about it and then we can offer each other support and share ideas. We can also laugh at the parts that are funny, commiserate on the parts that aren’t and help each other not feel like the world’s shittiest mothers.
When I was at the race expo in Richmond I stopped at a booth for the Speak Up Foundation. The woman at the booth told me a story of a young teenage girl who suffered from severe anxiety and depression and she used running as a way to cope. A few minutes after finishing her first half marathon, she collapsed and died. It turns out she had a heart condition no one knew about. When her parents went up to her room after her death, they found her journal. In it, she talked about how she was depressed and anxious but she felt afraid to talk about it to anyone because she would be judged for not being able to cope. She never even told her parents but she had made plans in her journal to to plan a 5K at her high school called the Speak Up 5K to bring awareness to mental illness and to lessen the stigma. Her parents decided to carry her dream forward and start the foundation that now sponsors charity runners at marathons and encourages people to speak up. I bought a Speak Up visor and I’m going to wear it to my races from now on. I’m also going to speak up about mental illness.
My son is autistic. My son is mentally ill. My son is also a great person with a lot to offer. So, the next time you see a child in public who isn’t acting the way he or she “should” stop for a minute and consider that they may have an illness. The next time you think about judging another parent for the way they raise their children, stop and put yourself in their shoes. Also, if you have a mental illness, don’t be ashamed. I’m beginning to think a lot of the best people do, too.