often think of my son’s autism as a journey. A journey with many, many steep mountains. And holes and cliffs. And of course, it’s slippery. The hills have jagged rocks and most of the time I feel like I am hanging on for dear life. There is no safety harness or map. I typically don’t know if I am even going in the right direction. And perhaps at times, I am going backward.
Here are the things that tripped me up on my Autism journey:
I waited.
I waited for Ehan to get older. I waited for him to be 1. And then 2. And then 3. I waited because no one believed me at his young age. But I knew. So, I waited for resources. I waited for someone to tell me what to do. I waited to get a diagnosis. I waited to get help from the family. I waited to get services. I kept thinking if I waited he would eventually snap out of it. Or improve. I truly believed that in my heart. And I felt so much guilt. I felt that by acknowledging Autism as a possibility I was failing my son. And that I had failed as a mom. Now I know that is ridiculous. Get help. The sooner you get intervention the better.
I listened to other people.
All of the people in your life have opinions. And most of them come from a good, loving place. They will tell you stories. They will observe your child and tell you what they think. Some good and some bad. I want to say that your neighbor is not a doctor. And your aunt is not a psychologist. They cannot diagnose autism. Or say a child is NOT autistic. I’ve heard it all though. There is a saying that goes, ‘We all eat lies when our heart is hungry.” I think about that a lot. I was so desperate for my son NOT to have autism that I believed everything that people told me. I was told that boys are late bloomers. I was told that boys are late talkers. I was told that everybody eventually talks.
I tried and waste too much time and money.
Child cured of autism when parents removed gluten, casein, and dairy! Or, a nonverbal child starts speaking weeks after starting Fish Oil Supplements. You will hear about these miracle cures. I tried ALL OF IT, my friends. The time I spent researching. Buying books. And the time I spent trying to get my child with severe food aversions to eat new, creative, gluten-free foods. I think I hid the fish oil in every type of juice. These miracle cures are really, really frustrating because they most likely won’t work for your kid. And you will feel like a failure all over again. They bring false hope. To this day I shut down when someone tells me about a friends sisters son that was cured. False hope is brutal.
I didn’t speak up.
This one is tough and I think it comes with time. At some point in your journey, your skin will get incredibly thick. You will feel or see something that doesn’t seem right. You learn to ask lots of questions. You learn to force communication. You will learn to speak up. For example, not every teacher or therapist or doctor will be the right fit for your child. This was a hard one for me to accept. I remember a time when Ehan was receiving private speech therapy. I loved Ehan’s therapist. I started a friendship with her. But in saying that, she was not the right fit for my autistic child. Not every person will bond with you or your child. Be loud about this. Ask for different teachers if needed. Make noise. Find the right people. Fight for what is right for your kid.
I didn’t ask for help.
‘I never knew motherhood was going to be so hard for you.’ I read that somewhere. Or maybe I heard it from a friend, I can’t remember, it’s been too long. Anyhow, it’s mean and it makes me laugh. Raising Ehan as a newborn and toddler was so unbelievably hard. I felt the pressure to do it all by myself. I was his mother. His dad and I didn’t need any help. I should’ve asked for more help. It’s out there friends. Reach for it.
I isolated myself.
I pulled away from friends and family who had kids around Ehan’s age. I severed friendships. I skipped family events. I couldn’t bring myself to be around them. It physically hurt me to see babies the same age. Hearing about their milestones made me feel sick. And for others to ask the question about Ehan. I often felt like I should lie. If I didn’t it would just prompt weird looks or the ‘lies.’ I couldn’t figure out why my baby crying all the time. The other parents seemed so relaxed. Why was I covered in sweat and chasing my child? At times I still avoid his school. Seeing his peers is more than I can handle. This is silly and I am working through it. Friends and family should be the people we turn too when we are in crisis. But I did not. And I have some pretty big regrets around this one. Isolation makes everything worse.
Sehr Joiya
