Empowering Parents and Autism

Categories: Parent Perspective

Many parents are overwhelmed with the vast amount of information and advice given to them about Autism. It’s all so confusing, often overwhelming and sometimes even conflicting.

Make sure they look you in the eyes. Eye contact is a social skill and it will help them fit in.

Don’t force them to look you in the eyes! It’s uncomfortable for them and makes it harder for them to listen.

Go gluten and dairy free –it’s a game changer. (Great- so what do you feed a chicken nugget, mac and cheese eating ONLY child?!)

You should try essential oils. They made my neighbors cousins autism go away!

Having an autistic child makes people feel entitled to literally stop you on the street to give you unsolicited advice. Until you find your own way and voice, it can be hard to cut through the chaos on what truly matters. I’m the Mom to two amazing autistic boys, Greyson is 12, and Parker is 10. I don’t always know what I’m doing, but I do know what philosophies shape our days and actions.

As a parent or caregiver of someone with autism, you spend the greatest amount of time with your child, and you have the ability to help them achieve their full potential. Teachers, Therapists and Schools come and go throughout your life- but you are the only constant. I say that not to overwhelm you, but to empower you.

YOU GOT THIS.

Here are some rules we live by. Some of the words I would share with you if you were at the beginning of it all and looking for what to believe and what to discard.  This list is for people who need hope and perspective, and not a bullet pointed list to “fix” anyone

 

Assume brilliance and teach the next right thing. Your child can learn. I’m going to say it again because sometimes the world will try to tell you otherwise- YOUR CHILD CAN LEARN. Expect progress and growth. Make sure goals are realistic yet reach high. Assume they can understand everything you say. Don’t talk about them like they aren’t there.

 

 

 

 

Each child is on their own timeline. And this timeline must be honored. I get messages – “When did your boys start talking? My son is (whatever age) and isn’t talking yet.” I get it. In fact, I’m pretty sure I sent a few of those messages and googled the heck out of that topic looking for specific ages preverbal kids with autism started talking when my boys were toddlers. I wanted to know exactly what to expect. There is no one size fits all. Some kids start talking at 3, some at 5, some never use their mouth to talk. Time will tell, and regardless of the outcome- life can still be good. Which leads me to the next topic.

 

Make sure they have a method to communicate TODAY. My oldest son, Greyson has autism and Childhood Apraxia of Speech. Although he said he first word by 12 months (“Wow”), his acquisition of language was slow, and significantly behind the language of typical peers that were the same age. Years later when we realized he also had Apraxia, it was suggested by our ABA team that we look into Alternative and Assistive Communication Device. I was NOT a fan of this idea because it felt like giving up on the idea that he would one day speak.

I wrote in detail about starting AAC here.

We didn’t start using a device until he was 7, and my only regret was that we didn’t start sooner. It helped him be less frustrated daily. It helped him express himself beyond pointing, and nodding or crying or yelling Communication is a human right, and we must advocate for that right for our children.

The best resource on Autism, are Autistic voices themselves. A few years ago I reached out looking for feedback from autistic teens and adults. I was lucky to connect with many folks, and got such great feedback.  I read through all the responses, laughing and crying. It was eye opening and amazing. I asked most individuals the following questions:

  • What’s important for parents of children with autism to know?
  • What do you wish the general public understood better?
  • How can the world be better adapted for your needs (schools/communities/jobs/etc.)
  • How would you answer this. “I wish the world knew how hard it is for me to:”
  • Do you have sensory seeking or avoiding tendencies? What does that feel like?
  • Anything else I should know? 

You can read all the answers here.

 

Create structure in your environment  I will never, ever forget- Greyson was about 26 months old and starting Applied Behavior Analysis. They were putting him on a very simple matching schedule, and asked where on the wall they could hang it. Hmmmmm. It needed to be sturdily mounted, because velcro’ed items were going to be taken on and off of it. I remember thinking, “I don’t want to mark up the wall….can’t we just lay it flat on the table?” Once I saw how much a difference structure and routine made in Grey’s life, I was SOLD. I would have knocked down walls and glued myself to the ceiling if it made his life easier. I learned to keep work spaces free of clutter with not a lot of stuff on the wall. It was SO HARD for him to focus in places that had busy walls and stuff everywhere. I started putting toys out of sight in bins in his work area because who can pay attention if dancing Elmo is just sitting out begging to be squeezed so he would shake his hips. I learned that some multi-step tasks were easier if there were a visual to support it- like going to the bathroom and brushing teeth. You will realize what your child needs simply by paying attention. (What distracts or upsets them? Where do you have to repeat instructions daily? How does this space look and feel and does it match the activities that need to happen in this space?) We have used Visual Schedule daily since then. Now both boys’ schedule can be written out, and it still is a game changer in our home. I wrote one to go to the Mall with Parker

  1. Mom get shirt
  2. Mom get makeup
  3. Parker’s Choice

He picked the pretzel place. Can you blame him?

Speak concisely – I realized the other day, when I say, “hand me a couple (blanks), my boys don’t know what the heck a couple is. “Grab a seat-“ makes no sense- so we say bottom in chair- or sit down. Have you ever noticed if you ask someone,  “Do you want coffee (or whatever thing), if they say, “ I’m good”- for some reason that means no?! Our language and all its nuisances is SO  confusing.

For a child with severe receptive communication delays, you may not want to say, “I don’t like it when you hit your brother. That isn’t nice. Next time you just need to ask him if you can see his toy. How would you feel if someone hit you? I need you to think about your actions before you do something and make a better choice next time. We can’t just hit people to get what we want.”

Whatever the original point of that Ted Talk for one was- IT WAS LOST in all those words. Make sure the level of language you are using matches the child.

Little lightbulbs daily- Consistency over time creates permanent change. It’s ok to have a bad morning or day or week. That won’t undo what is done on an ongoing daily basis. Catch them being good and be concise and concrete with your praise. Truly, there is so much to celebrate. We celebrate daily, sometimes just for making it through a day or a hair wash or an outing. Those little light bulbs that turn on are magic, and they will light the way.

Chrissy Kelly
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