I wish I took the advice of others when Ayden was first diagnosed. People told me to look for mommy groups and to bond with others who are in the same situation. But I took his diagnoses logically. I kept thinking “okay he’s been diagnosed. Now what’s the next step?” I then proceeded to follow every step, attend every meeting, and schedule every appointment. Until one day, I burst into tears because my child was crying. He was as crying because he wanted something but I couldn’t guess what. He kept shrieking and pointing but nothing I was picking up was what he wanted. I cried because my own flesh and blood couldn’t talk to me and tell me how to help him. Of course he stopped crying, but my god, once that faucet opened for me, I became an emotional wreck.
I began to lose hope in everything. Nothing was ever going to get better. People kept telling me “God blessed you with this child because children like this need strong mothers.” I say mothers because 1. That’s what they said and 2. that’s the word that pertains to this specific situations. I just wanted to clarify because there are some amazing fathers and single fathers in this community that do just as much as a mother does and I don’t want anyone to be offended. Anyways, I kept repeating, to no one in particular “but I’ve been through enough! When will enough be enough?” I let my depression get the best of me and just wallowed in my bed. I did what was necessary but never anything that was optional. I cooked and cleaned and cared for my child but never tried to exceed past that. I was in this black hole and shut out everyone. To me, no one could possibly understand me.
I remember getting exasperated because yet another service coordinator of mine was leaving on maternity leave and didn’t do their job efficiently so while Ayden was supposed to start school awkwardly in January of 2016, when he turned three (and aged out of early intervention), he was stuck with at home therapy. I HATED our ABA therapist at this point. At first she was very helpful but after a while, I saw her true colors. She was the only therapist who thought that my son was mentally retarded. While every other therapist and teacher said they see so much intelligence out of him everyday, she wanted him to wear a helmet and to diagnose him as mentally retarded with ADD. If he was actually those that things, then fine but if you ever met my son, you’d know it’s not true. I didn’t want to renew my contract with her, so we went without aba for a month. We transitioned into a center based program.
Touring All About Kids was a defining moment for me. While I still felt judging eyes on me, I had this gut feeling (and you know I always follow it), that things will change here for the better. At the center, you must attend with your child and wait for two hours until their sessions are over. Ayden also started to take speech therapy over there so some days we were there for several hours. AJ was so distracted by all the toys, he didn’t even notice that I was gone. But this isn’t about his progression/regression. This is about the village I found.
You always hear “it takes a village to raise a child” and usually you hear it from family. Well my family was (and even when they say other wise, is) in denial of Ayden’s diagnoses. In a Hispanic/Latino household, you’d only hear “but he’s just a baby, give him time or even better “your uncle didn’t talk until he was five.” Just because he didn’t talk until he was five doesn’t mean it’s okay. I never felt the amount of support from my family that I needed as a single mother of a special needs child. I was always told “if you need a break, let me know and I’ll watch him” but the offer hardly ever followed through. I accepted the fact that Ayden was MY child and MY responsibility a long thing ago, before his diagnosis. I didn’t want anyone’s help nor did I need it. I always made it work, but my mental health said otherwise.
I bought so much material to read on my first day without needing it because the mothers of the 9:30 am group were so welcoming to me. I began to find the village. Now, it wasn’t like they were babysitting or helping buy clothes. I was in charge of that 24/7 without a problem. They helped ME. They assured me that everything isn’t so bad as long as you have those who do understand how bad it is. There were mothers who were crying because their child didn’t eat or because their child didn’t touch certain things because of the feel of it. We all had our own mountain to climb. It was good to see other people go through the same problem as I was and realize, it could be worse. I was reading a blog post from Squeeze the Spaceman’s Taco on one of my darkest days. This post literally made my days brighter because it was all about “some people have it worse.” Now, I’m not happy people have these problems or conditions. Never. But I am glad that my child is getting the attention he deserves. He’s getting the help he needs, he’s clothed, fed, and most of all happy.
I think we all seem to forget what we have in front of us. We make such high goals that we forget the little goals that we have accomplished because they aren’t acknowledged as much as getting a house or car. A lot of people say “well these are things you’re supposed to do” but fail to realize that there are people who are horrible “parents”, starving their children on purpose or keeping all child support for themselves rather than their child. No one is SUPPOSED to do anything but rather WANT to do something. I want to be a great parent so I feed my child, play with my child, educate my child, dress my child. That’s what we call Love and yes, a lot of people take advantage of love. I see what I do for my child and autism or not, we truly are blessed and I am proud of my hard work. Whether you have a child with a disability or not, never forget to pat yourself on the back for doing the laundry or getting groceries, or reading them a bedtime story. Who knows, maybe those will be the memories that they’ll cherish. Those nights doing laundry with mom, grocery shopping with dad, the bed time stories with their parents. Everyday your child smiles, you’ve accomplished something. You’ll know you’ve found your village when those people applaude your “tiny” accomplishments.