Tonight the Empire State Building, Niagra Falls, Rockefeller Center, the Suez Canal, Sydney Opera House, Edinburgh Castle, and many many more landmarks and homes across the world will be lit up with blue lights to spread awareness and acceptance of those on the autism spectrum for World Autism Awareness Day. Additionally, the month of April is National Autism Awareness month.
If you’ve followed us for any length of time you probably know we (Matt & Jenny S) are the proud parents of a sweet little boy on the autism spectrum. It is our hope that our followers and friends will take at least a few moments out of your day to promote awareness and acceptance of those on the autism spectrum. For our part, we have chosen to share a bit more of our personal experience with autism.
Our youngest child was diagnosed with autism spectrum disorder (ASD) in March of 2016, following a devastating regression in early December 2015 that silenced his speech, made his eyes go dull, and caused him to withdrawal from our world, even though he remained physically present. Not all children with autism regress—many children are detected by missed milestones. However, our son was an early talker and the regression was sudden and very obvious.
Despite the obvious and dramatic loss of skills, we faced a long wait to even be seen for diagnosis because of the limited availability of specialists. Thankfully we were blessed with a “short” 3 month wait which was filled with anxiety, fear, and lots and lots of self-education. By the time we were seen for diagnosis we already knew in our hearts what we were facing. After hours of testing and interviews, the diagnosis was confirmed, and new appointments were booked to screen for other conditions that are often found in tandem with autism.
The next few months were a blur of tests with moments ranging from hearing booths, to holding our son as probes were literally glued to his scalp as he was tested for seizure activity and then again as the probes were removed using acetone, to holding his hand at the hospital as an anesthesiologist prepared him to be put to sleep so they could look at his brain activity to determine if he was still able to hear.
As time passed more and more “autistic behaviors” emerged, including flapping, spinning in circles, humming, pica, toe-walking, and sadly some self-harming that has left him with noticeable scars on one of his hands. Sleep was quickly reduced to short spans that didn’t allow for the rest of the family to function without sleeping in shifts. He is drawn to water and heights and is unaware of the dangers that they can present to him, making his tendency to wander and bolt particularly dangerous. He also struggles with becoming overloaded by some lights, sounds, and textures, as well as with some crowded social situations.
In therapy he has worked on maintaining eye contact, learned how to play with some toys appropriately, and how to sign some basic requests. At home we have installed therapy swings, gymnastic wedges, mats, and crash pads, and use yoga daily as an additional tool in our toolbox to give him the vestibular stimulation that he needs to learn.
Today we have 2 years of a combination of hundreds of hours of speech, occupational, and ABA therapy under our belts. Though he is still nonverbal he can communicate some through a handful of signs, and he has greatly increased his eye contact and interaction with others. He can light up a room with his gorgeous smile and happy squeals, and he is strong, happy, and active, and we are so very proud of how hard he has worked and how far he has come.
Although our sweet boy is only 3 years old, he has taught us so much about acceptance and love. He will absolutely always have autism. It isn’t something he will outgrow and there is no cure, but early intervention has given our amazing, funny, sweet, perfect little boy back to us, just a little bit different than he was before the regression.
While we have always been very open and vocal about our son’s autism, it doesn’t give us complete immunity to the stares and pointing, nor the well-intended but misguided advice from strangers in public. At times a visit grocery store can sometimes feel like a private hell. When we are able to attend church we can often be seen sneaking out early if he gets overwhelmed. Our other children and the children and parents in our play groups are all comfortable with our son, but every outing requires some level of pre-planning and an escape plan. Babysitters and unfortunately even family members have been known to disappear from our lives since his regression, and we accept that it is simply for the better.
Often adults stare for a moment, but then avert their eyes in an effort to be polite upon noticing that we are using sign language with our son. I can honestly say I was guilty of the same before our son because I didn’t want to be rude—but now on the other side of things, I can tell you that it hurts more than helps. I can’t make you aware if you won’t even look in our direction! We would by far rather answer your (or your child’s!) questions rather than you try to pretend that we don’t exist. I can’t tell you the comfort it brings me when someone notices my child is different and welcomes us anyway!
Today is World Autism Awareness Day—but for us, it is every day. We hope that by sharing our story we can bring just a little bit more awareness, acceptance, and compassion to this amazing community of beautiful souls and the family and friends who love them.