Autism and my son... for other moms :)
I wrote this up back in December and posted it on my Facebook... I had been getting a LOT of questions and a lot of people with neurotypical children were trying to tell me what I should do to "help" my son... or they'd question why he isn't doing things their child was doing. I got fed up and just wrote for a long time. The few moms on my facebook who have a special needs or autistic child loved it and I got a lot of good feedback so I thought I'd share here so others can relate!
Each one of you moms is amazing! You're all heroes and advocates and I'd imagine much stronger than you ever imagined you could be or would have to be. <3 Lots of love to each of you!!!
When people find out my son is autistic, the questions start pouring in...
I decided I will spend a little time talking about something very important to me. My amazing, smart little man... I often hear, "I'm sorry" from people when I tell them. I hate that. Why are you sorry? I'm not! My son is amazing, this is not a tragedy.
I read all of your posts about your children who are my son's age and younger and all of the amazing things they're doing... and I'm so happy for you! However my day to day with our little man is quite different. While your child is forming sentences and saying witty, comical things to you, I am wishing for just once that my Victor would give us eye contact and say "I love you too" when we lay him down to bed instead of repeating random words like, "Cheetah, walking, drink" over and over as we say, "I love you Vic..."
While you're sitting down reading stories to your child, we're desperately trying to do the same, while little man yanks the book from us, only wanting to quickly flip through the pages over and over too fast to even see what's on a page.
While you're watching your child play or you're playing with him, we are sitting with Vic and his toys trying to initiate interactive play while he lines all of his animals up in front of the tv or pushes the same button over and over on one particular toy.
While you're watching your child play with other kids at the park, we're the ones off to the side watching our son so desperately wanting to play with the other kids, but not knowing how... he's in his own world or running up to random children flailing his arms out and excitedly yelling words at them that they don't understand.
When you're at the grocery store and your child is being cute and talking to you, smiling and interacting with people who ask how old he is or what his name is, my son is repeating to himself, "Now find the word (pause) polar bear" because it's a line he's memorized from his "Your Baby Can Read" dvds. People often ask him what his name is or how old he is and he doesn't seem to even notice them and if he does he just smiles and goes back to what he was involved in.
When you are getting your child dressed up for Halloween and being excited about trick or treating, we're staying in because not only will the crowds of people in costumes scare him, but the thought of him trying to comprehend and participate in "Trick or treat" is just not going to happen. Holidays like Halloween, Christmas and birthdays are things we have to prepare for months ahead of time. We have to practice "trick or treat" and let our son see videos and learn songs about Christmas so he knows who Santa is and wait to see if he just MIGHT care enough to want to see him. And presents? Let me tell you, that some toys are downright terrifying to our son! We got him a Sesame Street alphabet toy when he was two... that one ended up having to be hidden in the closet for a year because even if he SAW it, he would cover his ears and cry like we were showing him a horror movie. Toys and gifting are a very planned and thought out process!
We have to avoid all balloons, magazine stands and books in any store because these are things that trigger him into meltdown mode. These are things that if he sees, he gets stuck. There is no reason to him that he shouldn't have these things and if we pass by them without letting him grab what he wants, it's immediate meltdown. Even once we get to the car, the gasping cries that make him out of breath can last up to ten minutes or more.
Certain things that seem like regular, small things that your child has probably been doing for a while now are things that we wish we could help our son do... little things such as drinking through a straw, eating with a fork or dressing himself are things that we struggle with. As for potty training, not even close. This is typical for children with autism and it is fine with us, but it causes a lot of concern for when he is going to be out of our care, in preschool or a daycare. Daycare is another issue in itself because if he were mistreated or upset, he can't even verbalize that to us. Constant worry.
Don't get me wrong, my son is very smart. He memorizes things like crazy. He communicates very well with US. He knows his colors and can recognize a ton of things when he sees them. He LOVES to show us that he knows these things and he smiles so big when he sees that something he does makes us happy. But it's different... When you're having a conversation with your child, I'm just happy that mine is pulling on my arm and leading me to something he wants or pushing his cup to me and saying, "Juice"... I am not complaining about any of this, I am madly, head over heels in love with my little man and everything about him and so is his daddy. Honestly, as a friend said to me, our life and daily routine with Victor seem normal for us until we leave our home. People want to know what our days and challenges are like, and the things I've just shared are really only a TINY glimpse into what we do everyday.
I have met a few other moms recently who have children with special needs or who are parents of an autistic child. These people are so inspirational to me and have been a great source of knowledge! Being able to share stories and vent to each other about challenges has been very comforting for me. I think I have rambled on enough for now... just do me a favor and the next time you're in the store and see a child acting out of control... don't automatically assume they are misbehaving or that their parent is not doing what's necessary to keep them in line. You never know what that person's situation is and it's easy to make a quick judgement. It's a lot for parents to deal with. Stress, frustration, patience we never knew we had and in the end the one who really deserves to be considered is the child because they are the ones actually going through something, not us. It's a million times harder for them!