Working to recover your child from autism is an emotional roller coaster.
With every success, your heart swells with pride, and you feel on top of the world. After all, every parent wants their child to be happy, healthy, and successful. For parents with autistic children, even small victories like sleeping through the night or eating a peaceful meal at a restaurant seem like a visit from Ed McMahon. There is an indescribable feeling of hope, where you allow yourself to think for just a moment, “Maybe…just maybe, everything is going to turn out alright.”
But for every success, there are also moments of pain, and I’m not talking about metaphorical pain. I am talking about gut-wrenching, heart-bursting pain, where every fiber of your being screams, “This just isn’t fair!” For me, these moments come right after the highest highs. Right when I think everything is going well, something happens that physically feels like a kick to the stomach.
This week, we’ve been working very hard at our house to identify foods that cause hyperactivity and/or aggression, so that we can eliminate them from Skyler’s diet. So far, we’ve eliminated dairy, artificial dyes, high phenol foods, and salicylates. This means I’ve patiently explained many, many times this week to Skyler that he can not have a piece of cheese, banana, apple, cookie, or other yummy items. Thankfully, Skyler has been very understanding and has gracefully taken the news like a much older, wiser child. But, I hate to take these things away from him; it seems so incredibly unfair. It’s even harder for his grandparents (especially his grandfather) to constantly deny him the foods he loves.
In situations like this, we are so very carefully balanced on an emotional precipice. We are working hard to appear strong and remain positive for Skyler, while on the inside, we are a wreck, wondering why Skyler has to go through all of this. Is it any wonder in these moments how horribly painful simple words from others can be? We know that Skyler has problems; he’s hyperactive and strong-willed. We accept that, and we are doing everything in our power to work on this. We’re not in denial. It’s not a fun situation for us OR for Skyler.
So, when Skyler is not at the top of his game, those that work with him have two choices:
1. They can let us know about his behavior, while maintaining a positive attitude. An example of this comes from his classroom teacher when she says, “Skyler had a difficult day, but we love him, and I am sure tomorrow will be better.” Keeping positive can make all of the difference in the world for an emotional, frustrated, hurting parent. We want to know about the behaviors (we NEED to know about the behaviors), but we also want to hold onto the hope that everything is going to be alright.
2. They can simply focus on the negative behaviors or make snide remarks. Trust me when I say this is not the way to go. You might not think twice about your words, but sometimes a small comment is all it takes to send a parent over the edge. This has happened a few times lately, and unfortunately it sends both my mom and me into uncontrollable tears. It causes the physical, heart-stabbing pain that I mentioned earlier. It reminds us that everything we are doing (denying Skyler foods he loves, giving foul-tasting supplements, punishing him even when we feel his behavior is not under his control) is not fixing the problem. It reminds us that we’re simply putting a band-aid on top of the real problem, autism. It quenches hope for a better tomorrow.
I honestly think Autism Awareness is important in society, and that is why I write this post. I am not writing to vent or complain; I am writing to remind the world that we are trying. We are at home giving Epsom baths while you’re taking your child out for yogurt. We are at home administering Grapefruit Seed Extract (bleh!), Lithium Orotate, and probiotics while your child is eating Halloween candy. It’s not fun, and we are secretly jealous of all the things your child can do and experience that ours cannot.
Despite all this, we love Skyler unconditionally, just the way he is. Today at church, a sweet soul reminded me that Skyler is a gift from God. I believe that, and I am eternally grateful for this gift. I just wish other people could occasionally see him as the blessing he is. He is loving, incredibly humorous, smart, and free-spirited. There is so much good in him, and if people can’t see and acknowledge that, I feel sorry – not for us, but for them.