Walking in His World While Helping Him Into Ours
Until he turned three, I felt like everything we were going through was just what kids went through. Then Damien stopped talking, made repetitive movements, and we noticed him doing different things with textures and sounds. We know now he has sensory problems, but I am not going to lie, I felt so lost during that time. We went to doctor after doctor and were told that he would stop on his own, and when we finally got him the referral to the head autism center, we had to wait over a year to be seen.
As a mom, I can tell you that Damien’s behaviors could be scary and aggressive, and they scared and overwhelmed me. I thought if I did better, he would do better—but my family said it was because he didn’t have enough discipline. I couldn’t stand that I was allowing myself to feel anger for a four-year-old child because I was letting people fill my head with the lie that he could control it.
In March of 2016, we officially got the autism spectrum disorder (ASD) diagnosis. I broke down for 24 hours thinking I must have done something wrong (obviously, I know now I didn’t). I was just so angry that my baby was having to go through this, that he was trapped in his own world, and I didn’t have the key yet. After that 24-hour period crying and throwing a pity party, I stood up and started reading everything I could about kids on the spectrum, I got him specialists, and I figured out I was no longer angry anymore. I knew the problem, and I knew that I was going to be there right next to him however he needed me. Other people offered judgments still claiming we just needed to force him to do things, and they didn’t want to take him in public in case he had a bit of a sensory meltdown. I decided right then and there that if my family didn’t want to learn, that was fine because I would learn all I could. He even went to a special preschool and started kindergarten in the fall. The transition was tough at first, but he was always ready to run to the bus in the morning. He has started acting like a big boy and I smile every time he proves wrong the many people who doubted him.
As most of you know, some of the things that stimulate kids on the spectrum can be tiring for us as parents. Damien watches the same parts of his movies over and over during Kindle time and has taken to banging noises because he likes the way the pressure feels on his arms. And the one thing that has this mommy a bit crazy is him shredding up every piece of paper or book he finds. I asked my husband if he was nesting, but he likes the sensation of shredding, and he likes to put different colors over the Kindle. We have started to get him to feel safe sleeping in his bed by using a bed tent. The only thing we have struggled with is potty training, but I see him making so many strides every day. For a minute, the idea of my kid having autism made me lash out at the people who made the comments, and now I just wish I could teach people tolerance and help them understand that just because a kiddo is on the spectrum doesn’t mean he’s not smart or can understand everything going on around him.
I’ve taken the philosophy that Damien had to let me into his world first before I could gently work on helping him in a non-ASD world. It has helped him wonders as he is very cuddly and always wants to lay in his tent with me, and we play with sensory toys that I found on Amazon. Really, I am the lucky one, because his smile wins me over. He now trusts me to come out of his world. He does not have sensory meltdowns in public; in fact, he loves to go out to dinner with people. He knows where his coat and backpack go after school, he asks with signs or uses the picture exchange communication system (PECS) for things, and he can work electronics better than I can. Being an autism mom has taught me so much, especially that my son is a hero and he can do anything.
To other parents out there who are feeling alone and afraid of the diagnosis, I encourage you not to be. There is nothing wrong with mourning things you will miss that maybe your kid won’t do, but I promise you they can do so much more. I know that some families are unsupportive, but you know how to do right by your kid. I found autism less scary the more I read and asked questions. Behaviors can be hard, but they can get better. The hardest part I have dealt with is my son not talking except saying “my Momma.” I want to hear that little voice so much, and I believe in my heart it will happen one day. These kids have so much potential.
Don’t be afraid to venture into their world, even if you feel silly sitting in a ball pit because you are making a bond that lasts. The littlest things that bring a smile to my lil’ man’s face amaze me. I have found mom support groups to be super helpful because the other moms understand what it can be like. I would just like to leave us all on this last note: The world better watch out because our ASD kids are going to take it by storm.
Andrea Taylor is 31 years old and is disabled from a chronic illness that left her needing a transplant. For now, she spends her life devoted to her son and raising awareness about autism. He is six years old and loves to cuddle with Mommy and wrestle with Daddy. They live in Columbia, Mo, and are currently considering doing an autism walk.
This article was featured in Issue 65 – Back-To-School Transitions