“If you’ve met one person with autism, you’ve met one person with autism.”
DR. STEPHEN SHORE
I want to emphasize in OUR toddler, because that’s all this will be, it is not the same for two people. I will simply share our personal experience on this Autism diagnosis journey we’ve been on so far.
I will start by saying, autism is nothing to sympathize or be upset over, Jax has the most wonderful personality and I wouldn’t change him for the world. To begin, our “red flags” actually started at around the 15 month mark, which in general is pretty early. We mentioned our concerns with our pediatrician and we were lucky to have such an amazing doctor that listened. He could have brushed things off until Jax was 3-4 years old, but he didn’t and I’m so grateful, because early intervention is proven to give children a better outcome, so I am told.
Well, our doctor listened to our concerns and screened him at 18 months. The screening is just a list of simple questions asking about our child’s typical behavior/attitude. When our pediatrician was still concerned for Autism, (due to Jax’s behavior at home and his speech/sensory delays), he had us start with speech and occupational therapy and gave us a list of resources with specific child care and family counseling clinics.
OUR “RED FLAGS”
Jax’s behavior started with a bizarre fascination with his hands. I swear to god, for hours, Jax could sit and stare at his hands. Or move them back and forth very quickly in front of his face. He still does this. Every single day. It’s called self-stimulation.
He made very little eye contact and when he did, he used his peripheral vision. The peripheral vision thing, is still a “thing” and it’s quite funny actually. Although now, he looks in his peripheral and runs up and down the wall, cabinets, fences, cars, chairs, really anything he can. Jax does this everyday. This is also self-stimulation.
He was and always has been a very secluded being. He didn’t want to be held or snuggled or touched really, (we just thought he was a brat). He also preferred to play by himself, and still does. Although, with therapy, he has gotten much better at interacting with us and giving us toys to play with. (WHICH IS AWESOME)
Jax also didn’t mimic anything we did. He wouldn’t clap, wave, blow kisses, point, smile, he wouldn’t do anything. Recently, with therapy, he now is doing most of these.
Jax is also a wanderer. Which, can you blame him? There are so many cool things to do and places to see! BUT he also has no regard for strangers and will just happily skip his way straight through a crowd of strangers without me.
For the longest time, Jax also didn’t respond to his name and still only does about half of the time. He doesn’t follow basic commands or understand anything I say. He has a very hard time making transitions between activities. He strongly dislikes getting bathed, dressed, having his bum changed, his hair brushed and being laid down. This is all current things we are working on. He does have pretty big tantrums and makes daily activities very hard, but he makes progress every day and I am so proud of him. At least he likes brushing his teeth!
Jax is VERY sensory sensitive. He only likes certain textures in food, he has a hard time playing in things like clay/sand. He doesn’t like anything squishy. However, he loves things that are visually stimulating and way too much. He gets very distracted by bright lights and spinning objects. He will sit and roll a toy car in front of his face with no concern for things going on around him and it is very hard to take his attention away while he is distracted. He is occasionally sensitive with noises and lately at night, he can’t sleep without his hands over his ears, it seems to make him comfortable.
He was also delayed developmentally. He crawled late, he walked late, is still barely talking, he couldn’t use his pincer until almost two years and struggles feeding himself still. This is the beauty/struggle in our autism experience. We go at his pace. We do things his way. He usually gets what he wants. He can’t express his emotions and why he feels the way he does, so for now, we do what we can to make him happy and when we can’t, we do our best to show him why we can’t.
We started speech and occupational therapy through a specific company and ended up paying $300 a session and Jax needed four sessions a month, we left pretty quickly with it being that expensive and not seeing progress. We started the state’s program, which is actually called, Early Intervention, so that’s cool. They are amazing and come to our house every other week and Jax is now making more eye contact, interacts with us much more, uses some sign language, says a few words and has decreased his self stimulation. He pulls me to things he wants, snuggles up next to me in bed and has been better about playing with other kids and sharing his toys.
We will continue doing speech and occupational therapy and because Jax struggles with so many things, he will also start preschool this year in a class with other autistic/delayed 2-3 year olds, which I am stoked about! We love same-age interaction!
Jax will see a psychiatrist and get an in-depth full evaluation to determine his level on the spectrum and that will begin our Applied Behavior Analysis (ABA) therapy. This therapy is specialized for children with autism and it helps counsel them through day to day problems and teaches them how to overcome fears, interact with peers and have a normal routine. From my understanding, ABA therapy is very individualized and changes as the child does.
We will continue working with therapy, and here are some things we have learned so far:
- If your children are struggling feeding themselves, use yogurt/pudding, something with a similar consistency, so that they can practice dipping it in, the food to mouth movement and they still get a bite.
- If they’re bad about diaper changes, find something new and distracting. At one point, we had a “potty truck” which we would only give Jax during diaper changes. Unfortunately, things do get old and we have yet to replace it, but it did work okay!
- Routine is supposed to be a pretty important thing for children with autism, but unfortunately, I don’t do the same things every day. However, we are trying to get him in the bath every morning after breakfast, because right now, the bath is our biggest melt down, so that is our “routine” focus at the moment.
- If you’re going to use signs, consistency is key. EVERYBODY should ALWAYS use the signs. Jax currently knows “want”, “more”, “please” and is learning, “milk”.
- Sometimes it is okay to “baby them”. This is probably the most important thing I have learned. Jax is very, very emotional and as I said before, can’t express himself. He can’t tell me what hurts, if he doesn’t feel good, if something made him scared or sad. All he can do is stand at my feet and cry. Some days, he spends all day long crying and wanting to be held. I have learned to do exactly that. Sometimes Jax needs a mental health day and that’s okay. We all need a day to cry sometimes and if laying in my arms and watching his favorite movie will make him feel better, that’s the least I can do.
This is a brief post of everything I have learned/experienced so far. I will post updates as life continues. I love my son more than I have ever loved anything and even with his struggles, I am so proud of how tough and brave he is. He amazes me every single day and I can’t wait to see the young man he one day becomes.
Thanks for reading, like it or don’t, comment with any questions, love letters, quotes, jokes, stories, hate mail, tips on how to blog better, ESPECIALLY what you want to read! Really, whatevs you’re feeling because ya girl likes interaction.