It’s been a rough few months with Justin, our severely autistic teenaged son, but even as I’m writing this I know it could be worse, much worse. In my idle moments (there aren’t many, but what woman today has a lot of these) I surf through comments made on Facebook support groups, and despite what’s going on with my son I know we’re still lucky. In the past few weeks I’ve read comments by parents who are watching their child’s self-injurious behavior and feel helpless. I’ve read the despair of parents witnessing their son’s ramped-up and returned aggression who feel his medication isn’t working.
Despite Justin’s “spells” or possible seizure episodes my son is still here, still gracing us with his hugs and smiles multiple times a day, still experiencing joy in his life. No matter what the next few weeks bring with tests and doctors’ visits, I still have this.
Although it’s difficult to watch him go through these periods where it seems he’s no longer connecting to our world, I know as an “autism mommy veteran” that there could be a solution here, that we might be able to find the right combination of meds to make these episodes stop. I also know from watching him cycle through many disturbing behaviors over the years that they might just stop on their own.
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In other words, as we ring in the new year (and may it be better than the last one!) there is hope here.
The truth is, I can remember a time (well, honestly, there have been several) where I was so overwhelmed I could not conjure up any hope. Going to that dark place didn’t help me and it certainly didn’t help my boy, but in the early days of his diagnosis it seemed impossible to feel any other way. At the time we were living hours from any of our relatives and they all worked anyway, and we lived in a state that provided us with only eight hours of therapy a month (!) for our son who had an official autism diagnosis. I immediately got trained in ABA and worked with him thirty hours a week for the next fifteen months until we moved to the haven of New Jersey and its excellent Early Intervention system. There were so many times during that difficult period that I felt I was losing myself, and I wished I’d known some parents with older kids who could give me some advice.
Whether your child has just been diagnosed, is just starting school, or is struggling through a difficult period, I’d like to share strategies that worked for me in the past that I wish I’d executed fourteen years ago, not just in recent years. I hope these help!
1) If at all possible, I recommend trying to get your son or daughter an appointment with one of Autism Speak’s Autism Treatment Networks. We’ve been bringing our son to the one in Philadelphia for eight years, and they have been cutting edge with medications and strategies to make his life better. Plus it’s always good to have a second opinion on how your child is doing.
2) If you are the primary caretaker of your autistic child, please make sure you take care of yourself. Strive for a few hours every week. Make those doctor’s appointments you’ve been putting off. Get a sitter so you can have coffee with a friend. It’s imperative that you take some time for yourself so you can remain strong for your child. Getting out is good for your health!
3) If you can, join a support group with at least a few other parents with kids your child’s age. Parents can be invaluable resources, especially local ones. These connections could prove to be invaluable.
4) Ask for help, ask for help, ask for help! Whether it’s your neighbor or a friend or a relative, take people up on their offers. Even if they just watch your child so you can run an errand, this break will really help. If you’re nervous about leaving your child alone with someone else have the person offering assistance “shadow” you prior to your leaving him so they can see your routines. People want to help, and while it may take some planning it’s important that you build a network of people who can come to your aid when you need it.
7) Plan time for you and your significant other to take a break together (this will be easier if you create that network!) Raising a child with autism has its gifts, but it can also be tough emotionally and physically on parents. Get that time together to reconnect if you can.
8) If your school district has a special education PTA try to join. This is another way to make important contacts and benefit from parents’ experiences. Plus it helps to be surrounded by adults who understand what you’re going through.
9) Make friends with other parents whose children have your child’s level of autism. I’ve made friends with parents of children with both severe and mild autism, and while I’ve benefitted from both connections sometimes I just need to vent to another parent who gets the severe side of the disorder. Make sure you seek out positive people, they are the ones you will benefit from the most!
10) Every night write down one good thing that happened that day. I will be honest with you, some days it’s just been “He smiled once today.” I have found trying to end each day on a positive note, no matter how small, sets me up for a more positive tomorrow.
I hope these suggestions have helped, and a happy new year to all of you!
For more on my family visit my blog at autismmommytherapist.wordpress.com
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