I am still processing the hurricane Ian experience. I am sitting with the windows open while I get hit by the warm breeze. There is no power, no running water, and no Internet connection. We are low on gasoline, but we are safe, sound, and at home, which makes everything better.
The naked branches of the trees in the backyard, the fallen trees, and the shingles of all colors piled up in the corners of the houses are just pieces of a story still unfolding as the days pass.
I am thinking about Emir and Yaya. Their resilience but also their challenges. Emir is an outstanding young man; still, Emir is a person with a significant disability. Emir has a dual diagnosis that inhibits his ability to process certain emotions. We went through a sensory overload through the hurricane. Sensory crises are challenging. You can see in his eyes his inability to self-regulate. You can see his body shaking like a lost leaf, and still, there is nothing I or he can do about it other than to try to stay calm and wait for the crisis to pass.
There is no “different ability” or “special superpowers,” and there is no way to consider yourself the “lucky one” when you see your child go through this. Coming out of these moments with gratitude is hard. There is a lot of pain when you see a disability face to face and realize there are some things that won’t change, no matter how much therapy, intervention, or preparation is involved. Some things are what they are, and we need to live with them, accept them, and take the time to process them and make peace with all the feelings they bring.
Under the same circumstances, Ayelen gets blank. She usually disconnects herself from traumatic experiences. It’s easier to deal with disconnection, and it is still painful. I would love to portray myself as the superhero with all the answers, but I have to admit that, in some cases, I am just the mother with no answers. The person breathing deeply to try to work from a higher place. The human being who, over the years, has understood that staying calm is sometimes the only option, an empty option that somehow has become her way to deal with everything around her in times of high stress.
I keep repeating the same, but after this new experience, I will keep doing it. Let’s stop romanticizing disability or trying to erase it. Let’s stop making everything about us to understand that it may take a long time before you see disability face to face. When it happens, you need to be prepared, you need to be strong, and you need to be ready to accept that it is not your fault: That is not a lack of therapy, intervention, or preparation. It’s a part of your child’s identity, and the soonest you accept it, the faster you will start working on the things you can change instead of obsessing or blaming yourself or others for the things that will never change.
This is not meant to be a self-pity blog post or a sad story to break anyone’s hopes or heart. This is intended to be an honest catharsis of what it is to have children with disabilities. Not only are the sound and happy times when everything is under control and everything looks bright and typical, but to talk also in the dark time in which you may lose faith and feel beaten by the circumstances. The day after the hurricane, I woke up to a weird feeling. I was numb. Not emotional at all but tired. The next day I could barely move my legs, and my head was spinning. I thought to myself, “that’s weird.” And my inner voice corrected me, “there is nothing weird about being tired after being in fight or flight mode for days.”
And my mind returned to those who experience similar emotions constantly due to a disability. Before denying disability’s existence, think about those who have lived under the storm most of their lives due to sensory issues, mental health challenges, and more. They need disability to be accepted and acknowledged to find the support they need to keep going and live worthy lives.
If we build on top of acceptance, everyone can benefit from accessing the services and supports they need. Overcoming disability is not the goal. Accepting our human boundaries must always be the beginning of building inclusive and supportive communities.
