When my son was diagnosed with Autism, I sat in my car and wept over the steering wheel while he screamed in the backseat. More than once while we were driving on the freeway, he climbed out of his booster seat and attacked me from behind. So you would think finally having an explanation for the violence and perseveration would bring me some relief, but it didn’t. Because in that moment I knew that I wasn’t fighting a battle–I was fighting a war, one that would go on for years.
And it has.
After reading research that suggested high-functioning children could actually get off the spectrum with enough help early on, I made the decision to focus my life around getting my son as much help as I could afford. Our daily schedule consists of work and school followed by two hours of ABA therapy and a once-a-week occupational therapy session. I’m constantly with my son, participating in therapy, and encouraging him onward. I don’t date because a) I can’t keep a babysitter and b) a lot of guys hear the word autism and say “no thanks”. The only reprieve I get from parenting is Sunday afternoons when my son does visitation with his father. The same father who when I told him “I don’t know what to do” (referring to those days when I couldn’t keep my son in full-time daycare because of his rage), he responded with “Oh, well, you’ll figure it out” and hung up so he could go play computer games.
Clearly, he’s a huge help.
My parents have been gone a long while. I have no community or friends that come to back me up when stuff hits the fan. When I thought I was having a heart attack, I drove thirty miles to drop my son off at school, and then drove myself to the ER where I spent half the day alone (the word best used to describe my existence). The hand I’ve been dealt is hard, but not impossible. You don’t know what you’re made of until you’re handed a situation where you have no choice but to keep going.
Which brings me to my point, here are the hard won lessons I’ve learned from dealing with autism.
- If your care provider isn’t doing their job, you can fire them and find someone who actually will. (As a side note, if a therapist gives you the hee-bee-geebies, you can also fire them.)
- Don’t rely on word of mouth regarding your options for treatment. If I had listened to those around me, my son would have only gotten help through the school district. For some parents, that’s all the help they can get because their insurance doesn’t cover ABA therapy. To those parents I say – I’m very sorry. Consider lobbying your representatives for this to change. For those of you who have insurance that will cover ABA therapy, call your insurance company and find out what your benefits are. Why? Because one-on-one treatment is far more effective than what your local school can offer. Yes, it takes time and sacrifice, but it’s worth the benefits in the long run. So don’t rely on what your neighbor or your sister did. Do your own research! I met with my son’s school team last week and his IEP consists only of a social skills class (some schools don’t even have that) because I chose to concentrate on behavioral therapy outside of school. (BTW the principal said last week that my efforts are reflected in improvements in my son’s behavior.)
- You can do it. Even when you’re throwing up in the bathroom and your kid won’t leave you alone to endure the stomach flu, you can in fact get through it with your sanity still in tact.
- Other people are often wrong. I have a friend whose family kept insisting there was nothing wrong with her son when he was clearly autistic. As a result, her son didn’t get help early on. Do NOT listen to other people first. Listen to your gut FIRST. Deep down, you know what’s best.
- Things can get better. Believe it. Say it. Repeat it. If you believe that things will get better, it’s the first step toward making progress.
- Your dreams matter too. The one thing I didn’t give up was my dream to make a living as a writer. All through this process, I’ve continued to write novels. No, it’s not easy to work a full-time job, commute, and raise an autistic child alone, but I have found the time late at night and on the weekends (while he’s distracted with his latest obsession) to write. Don’t give up on your dreams. Get creative.
- Hope is everything. There have been times when I’ve cursed my lot, cried, and considered giving up because I was so overwhelmed and so tired. Push the why me or this is too hard out of your head and tell yourself repeatedly that you’ve got this–it makes all the difference. Even if you don’t believe it, say it until you do.
YOU’VE GOT THIS!
Life is unpredictable. One minute you can be driving home from Hobby Lobby and the next your bones are broken and you’re standing in the middle of an intersection knowing that years worth of work has been shattered in an instant. So make the most out of your wins. Your kid got through a birthday party without tantruming when someone else got presents? WIN! They went willingly to daycare so you could get to work? WIN! You slept five hours without getting interrupted with night terrors? WIN!
Look for the wins. They will save your sanity on the darkest days.