I’m sorry. I lied.
I lied to you when I told you that things get easier. They don’t. In fact, as the gap gets bigger and bigger between my son and his neurotypical peers, it gets harder.
A tantrum in the store is understandable when you have a 2 year old, but when your child is 4 and screaming so loud that everyone within a 20 feet radius turns around to make sure nothing terrible is happening, it’s not cute. Not at all.
I wouldn’t change him for the world?
I’m sorry I lied to you when I told you, I wouldn’t change him for the world. I wouldn’t, but I wish he wasn’t autistic.
Does it mean I don’t love my son? Absolutely not. What it means is that autism isn’t a cool personality trait, autism is a disability. Yes, I know… it makes him unique, but why would I want my son to live with a lifelong disability? Why would I want him to struggle in so many areas under the pretext that neurodiversity is important. What is happy about the fact that my son can’t take care of himself and may never be able to? Why should I be satisfied with the fact that my son has never called me “mom”? Nowadays it’s all about being politically correct, and many people just want nice, inspirational, feel-good stories. I started this blog to share our journey, and people love reading it because of my honesty. That’s why I’m writing this post.
Here’s the truth
As I’m listening to the sound of Charlie screaming his head off because I won’t give him the bag of cat food that, incomprehensibly, he wants for lunch, my heart hurts. My head hurts. It hurts pretty much everyday because Charlie can’t talk. He can’t talk but he can sure scream. He’s capable of emitting these high-pitched screaming noises but he has little ability yet to give back love. Being a mother is hard work. Being the mother of a severely autistic child is emotionally draining.
“It will get easier”
I like writing positive stories because there are good moments sometimes and I want to remember them. I want to embrace them and share them. I’ve never lied to you; those good moments I wrote about, they exist, and they make me happy. There’s one thing, though, I wish I didn’t tell you: “things will get easier”.
This phrase needs clarification. I don’t know if things will get better. Maybe as the arc of time continues its bend forward, “things” will get better and our struggles will feel lighter. Could be. May be. Though who am I to know?
Autism doesn’t get easier, you just learn to deal with it better. I’ll learn to handle the bad moments better, and I’ll learn to celebrate small victories even more. That’s, I suppose, what will make it easier. At least that’s my hope for us, and my hope for all parents of special needs children. We’ll still have bad days but there will be fewer and fewer. Today, though, is one of those days.
Karen2017-06-27 at 2:43 PM
Have you seen this? Great news for many to mitigate this tough and at times heart wrenching disability. Prayers for you, your son and hope for the future understanding of this. I have two sons and four grandchildren on the spectrum. We now know they all carry the MTHFR gene mutation via testing making them unable to methylate ( detox) well from toxins/ chemicals in food, vaccines, water, Rx’s. Since we switched to all organic/ plant strong diets, filter all our drinking water , stopped vaccinating, and don’t give Tylenol products ( liver/ detox supressant) and other Rx’s , we’ve noticed HUGE changes for good. This is just one more bright ray
Linda Atwell2017-07-03 at 6:43 AM
Oh, I can so relate to this. My daughter is 37 and things have really only gotten better in the last years. Up till then, we’ve had some incredibly difficult years. And I so admire you admitting that you would not wish a disability on your child. I feel the same way. If I could wave a magic wand and make my daughter’s issues disappear, I would do it in a heartbeat. Partially for me, but mostly for her. Life is so challenging for her and I wish with all my heart I could make her life easier. Thanks for sharing this honest piece. I admire your honesty.
The Autism Cafe2017-07-03 at 1:41 PM
Thank you so much for taking the time to comment on my post. It means a lot to me. Have a great weekend!
Linda Atwell2017-07-03 at 6:46 AM
This was so honest and I feel the same way. I wrote a longer piece and it disappeared. I hope you are not alone in your feelings. My daughter is 37 and things only started to get better for us just a little over a year ago. Up till then, we struggled. Big time. BTW, I love, love, love your photographs. You are very talented.
AltapovaT2017-12-24 at 3:32 PM
Feel the same : ” Thanks for sharing this honest piece. I admire your honesty.”