My Letter to a Newly-Minted Special Needs Mom
I’m sitting outside of my son’s therapy session as I write this, a lump forming in my throat as I listen to his therapist tell him over and over again how to complete his task and remind him to focus.
The tension drains out of me a bit whenever I hear a “good, give me five!”
Those 45 minutes we spend each week at a sensory gym are a good metaphor for our life on the autism spectrum. Highs and lows, ups and downs, hope and promise quickly followed up by fear and worry.
Sebastian was about to turn 3 when he was diagnosed with ASD (autism spectrum disorder), before that with Sensory Processing Disorder, and in between every other possible neurological disorder has been implied, from OCD, to dyspraxia, and of course, I can’t forget the debilitating anxiety and food sensitivities too that have been thrown into the mix.
I make it a point to hug him afterwards, tell him he did a great job while we put his shoes back on, and that I’m so proud of how hard he’s working.
“That. I need to tell her that,” I think to myself as we’re walking back to the car and I rack my brain to figure out the right words to say in this post. Even if you’re not sure they understand; even if it seems they aren’t making progress, it doesn’t mean your child isn’t working their tiny but off.
I wish I could give you clear answers on how to handle life moving forward. But I don’t think anyone really has them, and PLEASE be leery of those who say they do. All you can do is take educated opinions to heart, consider them, and then ultimately make the decision on your own as to what path to choose for your child. So here are a few things I try to remember that will hopefully help you do that. I am no expert either. I’m just another mom trying to find her way through the maze. But if any of these words ease your worry even for just a few minutes, then I’ll consider this mission accomplished.
Keep your eyes wide open…
Don’t ignore the behaviors that are concerning you. Acknowledge them and face them head on. If it seems like something is wrong, then it probably is. And even if it isn’t, you’re not doing your child any harm by looking into it and asking for help. Speak to your pediatrician and call Early Intervention. Be honest about what you’ve observed. They will evaluate your child to see if they qualify for services. The sooner you address the issues the better!
Keep calm and carry on…
You WILL get pushed to your limits at times. No matter what you’re dealing with, the most important thing to remember is to keep your cool. Whether it’s a violent meltdown or hearing upsetting news from a therapist or teacher, anxiety only begets more anxiety. Muster all the strength you can gather for your baby so you can help them keep calm and keep on fighting and working toward overcoming the obstacles in their way.
See the world differently…
All actions are reactions. Your child is a human (albeit a very small one), but still a human. They aren’t just being a brat or being willful or stubborn. When your child is on the spectrum they are bombarded with more on a daily basis than you will ever know or understand. So try to see things from their perspective. Unfortunately they don’t see certain situations as fun or exciting, and they find joy in other activities. Remember the world would be a pretty boring place if we were all the same. You’ve been given the honor of parenting someone who sees the world differently. And it’s those people who go on to change the world.
Live in the NOW…
It’s going to be easy to spiral. To look into their future and wonder what will be. Don’t. Just stop right now because it’s doing you no good. Focus on the now and helping them just enjoy their childhood. It’s the most important thing you can do for them (at least in my opinion).
Celebrate their strengths…
Don’t dismiss the things your child does well. Many will tell you they’re useless and not functional. But they are drawn to them for a reason. Try to work with what they enjoy and channel that enthusiasm into other more creative, constructive venues. I haven’t figured out how to do this yet either, but we’re trying.
I truly believe we are given these children for a reason: because God knew we’d have the strength and dedication to power through rough times with them. So accept that gift with open arms and never give up. Explore and consider every resource and avenue available to you (there are lots!) But make sure to focus on the fun too. It’s what childhood is for.
Last but not least, remember how lucky you are. There’s lots of work to be done but you’ve been given a child that for all their special needs, will be more passionate about what they want and love you more fiercely than you ever thought possible.
About AnnMarie Martin
AnnMarie Martin is the author of The Spinfords, a story inspired by her journey with her son that gives children the confidence to embrace their differences and celebrate them. She’s worked as a reporter and editor for more than 10 years now, and is so thankful it’s afforded her the chance to travel the world and meet and profile people from all walks of life. She also authored the novel The Hollow and short story Disconnected.