Raising My Daughter with Autism
Light it up blue is just one month. Living with autism is all year.
I have spent the past 22 years in the world of autism. It began as I became a mom. My beautiful angelic baby girl, who looked so perfect when she was born, had a world ahead of her that I would have never imagined. It’s been a long roller coaster ride for her and our family.
I’ve worn so many hats that I don’t have room in my closet for all of them. I know it brought out so much in me, pushed me to become a very strong person and also forced me to learn and become extremely knowledgeable about so many things. I put a career on hold because autism became my career. It’s become my job 24 hours a day, 7 days a week. It was my responsibility to my child and my family.
As the world becomes more aware of autism based on the numbers being diagnosed, everyone knows someone with autism. And the interesting thing is each person with autism is so very different. I always get asked the same questions and get the same comments. Early on, I felt that people were bold to ask such questions and have such judgment. It amazed me and made me really have to work hard to understand humanity. As my daughter has gotten older, I’ve learned to embrace the questions and judgment as a learning/advocacy opportunity. I have always wanted to be more involved in more formal advocacy but my time and energy is first and foremost for my daughter. It takes a tremendous amount of fuel to advocate, and I have to be cautious with where I put my energy. Yet the world of social media and technology have created so many ways to advocate and spread awareness.
Have you ever seen a child in a store or restaurant having a meltdown, having no words to express themselves, feeling completely overwhelmed with things we know as simple and routine? They might have trouble regulating their voice, feeling like they have no control over anything around them and completely overstimulated from all of the sensory input around them. To us, a restaurant, store, or festival is fun. To a child with autism it can be too much to handle. I always try to see the world the way my daughter sees it and try to anticipate at least three steps ahead of what we are doing to prepare her to make it as easy, and enjoyable.
The author with her daughter
I recently came down with a virus and as usual, I didn’t stop. I always keep moving. But this time I fainted and hit my head resulting in a concussion.
As I started the recovery process and attend physical therapy, I began to realize how my daughter actually feels in situations. It is an unbelievable revelation to understand complete sensitivity to light, noise, over-stimulation from busy places, and not feeling where you are in space.
My concussion gave me one more window on how it feels to deal with autism in everyday situations.
I now understand the fatigue that comes with all of those things, as well as trying to cope through everyday situations. I am able to communicate all of these symptoms. But I think about kids on the spectrum that can’t and don’t have the language, how scary and frustrating that is on a daily basis. The patience, empathy and support for these kids/adults with autism is so important. I’ve fortunately been able to use my experience from all of these years with my daughter to plan ahead for restaurants, stores, etc… to help in my recovery. And the good news is I will be back at 100 percent.
Kids on the spectrum still have so many challenges. My daughter has come such a long way and does very well. I’m so proud of her and so grateful for her achievements, but there are still a lot of new situations that require some accommodations. There are kids on the spectrum that fully recover but there are many that don’t. And it’s important to embrace who they are as a person, not as a person with autism. It is so important to enjoy who they are and what they bring to life. My daughter is so sweet, kind, empathetic, positive, witty, hardworking and beautiful. She is such an inspiration and brightens so many people’s day. I am very proud of who she is and what she has accomplished.
My hope of spreading awareness is beyond the one month autism awareness campaign of “light it up blue”. Every day we should “light up” by always being considerate, supportive, patient and empathetic to others with special needs. You don’t need to experience a concussion or have a child on the autism spectrum to know this. But my concussion gave me one more window on how it feels to deal with autism in everyday situations. I strongly suggest you put yourself in other’s shoes (without having a concussion of course) and make our world and life the best it can be for everyone.