I love my son and couldn’t care less how the rest of the world views Autism.
Also….this statement is not totally truthful.
I do care, a lot, what people think of my son. How other people view Autism affects how he is treated, so it’s very important that I do my best to explain his Autism to the people in his life. But explaining a spectrum disorder to people who don’t live in his world every day, who may only visit on his good days, can be a daunting task.
And our definition changes everyday.
I got lucky. My mom has been an Occupational Therapist for nearly 20 years, so when we first realized Simon wasn’t meeting his milestones, I was able to get help right away. From day one, she was able to point me in the right direction, helped me navigate paperwork, and gave me tons of resources to learn about childhood development. In our little bubble, ASD wasn’t a scary diagnosis, it was just a medical term and our lives were normal to us.
Outside of that little bubble, we were met with a full spectrum of speculation, questions, negativity, and disregard. In the earlier months, when we were navigating being first time parents and everything that came with being a special needs family, it was just easier to shut everyone out. We didn’t have the time or the energy to keep reaching out to explain our situation, because most of it, we didn’t understand either. We were just surviving each day. And we lost a lot of relationships along the way.
For the friends and family that stuck it out and gave us space, eventually we needed to talk about our situation. It wasn’t that I didn’t want to share, I just didn’t know how. I mean, I had read mountains of books and we had hundreds of hours of Early Intervention therapy, but I didn’t know how to condense that into a simple explanation. And sometimes, the more condense the explanation the more questions it prompted. Again….too exhausted to deal with all that.
Sometimes, when family was just trying to be helpful and optimistic, it made me feel like I wasn’t doing enough or I was over-parenting. I was an emotional wreck most days and found any comments about our situation hurtful, even if that wasn’t the intention.
Social media made everything a thousand times worse. When Simon and I were having a good day, which were few and far between in the beginning, I would take a sweet picture and share. I was creating a glowing perception of a happy and healthy household that was anything but the truth. So when we were constantly declining invites and dodging phone calls, no one could understand that we were “having a hard time.” How would anyone have known otherwise?
I could blame all the people that didn’t give us a break, that didn’t give us the benefit of the doubt we were dealing with a lot, that just ignored us right back. I could also blame myself for not being able to find a way to communicate what was happening in our lives. The really tough thing about being a new parent with a special needs baby is not having a moment to breathe, to take account, to process. Everyday was filled with worry and appointments and heartache and total exhaustion. Simon was our main focus. Nothing else mattered.
I wish I would have know how to explain what was happening, but even with a full night’s sleep and a strong cup of coffee, there was just too much going on to focus on anyone but those in our bubble. As we began to better understand our son and his needs, we grew into better parents for him. And now we have time for everyone else.
Check back here Next week for the follow-up post.
*If you have any concerns about your child’s development, contact your pediatrician, or school district special education department for an evaluation.*
Previously posted at Hudson Valley Parent Magazine.