Good thing I have a dinner table large enough for my party of eight. Now this number does not include the fish, our 2 dogs and the 7 hens but as you can see our home is never a quiet one.
The biggest misconception about life with a nonverbal child is that our home is quiet. In truth, it’s anything but. Cody is the noisiest child in our house with his constant cute squeaks and his conversation sounds and the best part is his new Popeye laugh imitation, “ugugugug!” Then you have a 14 year teenager that carries his blue tooth speaker around the house AFTER Santa brought him expensive Beats headphones!
A week in the Neustupa house never stops and we go through more toilet paper than anyone on our street. At any given time, we most likely have a therapist in our home 6 days a week. A friend and I went to lunch last week and she asked me, “When do you have just time alone to yourself in your home?” I paused, quickly went through each day of the week and realized there really was no time. The one day a week we have with no therapy is our Sunday’s and we designate that our family day. I will share a little about our family day later…….
Back to the ciaos, don’t get me wrong, I do miss turning up the music super loud and sometimes dance or just relax by taking a bath or giving myself a facial but I keep reminding myself these crazy one on one therapy hours will be more manageable with time. Our time right now for Cody is critical. Most of you already have learned we use ABA 32 hours a week mixed with 12 hours of Communications Class with his peers. Yes, you read this correct, he works longer than most adults do.
Applied Behavior Analysis Therapy (ABA) is well-known, scientifically proven intervention for increasing functional skills in children with autism. While children can make great gains with ABA therapy especially when used at a very early age, the children who make the most gains are the ones who have parents who are actively involved in their child’s therapy. Being actively involved doesn’t mean I observe every single session and/or attempt to run my own sessions at home. However, I do fully understand that it does carry over during Cody’s everyday routine. For example, if our therapist tells me they are working on increasing Cody’s receptive identification skills, at home I would then look through picture books with him and point to various pictures in the book.
This is one area, I believe has been very effective for Cody’s progress because I am always ensuring that therapy never stops in our home. I basically share my training and knowledge with Brad and Cameron. When we do work with Cody, I make the activities fun and not feel like work for him too since he is receiving therapy multiple days a week. I often will follow his lead and try to create “teachable moments” based off what he currently is interested in that week. So this is why I invite the ciaos into our home because its what’s working for Cody today and we are making some great strides.
Can’t say it enough, carrying Cody’s therapy into his every day routine has allowed us to achieve his goals and more. I do believe if you don’t continue to practice what he learns and build upon it, it can be counter-productive especially if you are doing something completely different than what is happening in therapy. For example, if Cody is working on a certain method of communication in therapy, but we do not make him communicate this way at home, then Cody is going to get very confused and consequently will not learn to effectively communicate in a functional manner. This is quite tricky today for us because we are all learning how to use his communication device paired with his vocals and he learns completely different than a typical child.
I love these days. As a family, we started exploring different fun activities as a family. This helps Cody get used to different sensory surroundings and helps teach him to communicate his needs outside of our home setting. We go all over and the more we do it, the more he loves it. With his huge smile and his flappy hands, he doesn’t shy away from life. He wears his autism on his sleeve for all to see and I love him for that. Just last weekend, we took Cody to his first Dallas Symphony Orchestra concert. And the weekend before we attempted to take him on a trail head for a hike. Key word attempted. That did not go over so well since he eyed the park first! Ha!
Cody’s a child who is bursting to tell me an in-depth story about bears or trains but just he just doesn’t have the words yet. He’s a vibrant little firecracker who stores his own genius within. And when he lets you into that world, it’s amazing. His eye contact is so good I sometimes think he can see straight into my soul. Cody loves fiercely and makes strong bonds with those who care for him. During our end-of-the-day hug at bedtime, we look into each other’s eyes and in that moment, we don’t need words. We have each other.
So all in all, I would not change my family of 8 (or 18 if you include our pets) for the world. This ciaos, is part of our family today and I embrace every moment.