What do you see when you look at this photo?
One of the hardest things to accept about my boys’ Autism diagnoses was that I couldn’t see it. There were a lot of behavioral indications, but as far as humans go, my boys are aesthetically perfect. They are beautiful and strong. I am def proud of this, and I struggle with it at the same time. So, what is the problem? Well, I have many concerns when it comes to safety. If their disability cannot be seen it could mean that they could face some mistreatment.
A lot of people with disabilities have visually obvious indicators, such as a wheel chair or a helmet. Most people will see these indicators, and accommodate the person with the disability. My kids do not have visual indicators. This means that they require constant supervision and advocacy. People are not making accommodations for my children based on seeing them. This can be tough because sometimes the boys behaviors look rebellious or aggressive. This has people looking at me as if I cannot control my children. I have felt mom-shamed many times. It really sucks, but I know that I am doing just fine.
Another problem with my boys not having visual indicators of a disability, is that if they wander off no one realizes that they are in need of help. One of my sons does not have enough words to get proper help, and my other son is non-verbal. They are not cautious of strangers, so they are vulnerable when they are alone. I worry about this every time we are in public. I am considering having them wear gps devices, so that they can be tracked by an app on my phone. This would be helpful if they don’t take off the device. There lies my challenge.
In a way, I would like for everyone to know that the twins have ASD. In a perfect world everyone would be compassionate, helpful, and understanding. The fact that ASD cannot be seen is also a blessing at times. Every now and then, we are able to have an outing were things go super smoothly. It is nice to just be with my family without needing to constantly explain my boys behaviors to strangers. These days are extremely rewarding, though I do not mind advocating for them on the days when they need me.
Below the photo at the top of this post, I asked what you what you see. Do you see two humans with a debilitating neurological condition? Probably not without an explanation. This is why constant advocacy is critical to the safety of my children. I have to help them navigate this world 24/7. It is my number one job in life. I am their voice. I have always been told that I talk too much and that I am too loud. This turns out to be the best thing for my children. I am exactly what they need me to be. This is my calling.
I wouldn’t change a thing.
The Millennial Twin Mom