We participate in Light It Up Blue to celebrate our boy and all of the hard work he puts in every single day.
Autism will touch your life. You will interact with people on the spectrum in your community, your workplace, and in your children’s classrooms.
That is why we share our story. To help spread awareness, understanding, acceptance, inclusion and kindness so that everyone impacted by autism can find some more compassion and patience along their road.
Our hearts are FULL seeing all the photos roll in of you all in your BLUE!! Keep them coming, friends! You can text, post on social media or email them to firstname.lastname@example.org. We’re putting together a special little something for our guy.
We’re so thankful you are on this journey with us.
As a parent to a toddler on the autism spectrum, birthdays were hard. Seeing my son around his peers was a very loud reminder of just how old he was and where he was developmentally.
In those pre-autism-diagnosis days, we attempted all the traditional birthday festivities that a typical child would enjoy and our son wanted nothing to do with any of it. We couldn’t get him to open a present, listen to the “Happy Birthday” song or even look at his cake, let alone taste it. He ignored all of our friends and family and their birthday well-wishes.
My friends would tell sweet stories about words their children were saying and I would completely miss the cuteness and celebration of it all. I was stuck on the fact that those children were talking and my boy wasn’t.
I was jealous and then I felt guilt and anger about that jealousy. So many ugly emotions.
One year we really didn’t want to do anything to celebrate his birthday. It’s so frustrating when something that is supposed to be fun ends up overwhelming and upsetting him.
Parents: if you can relate to this, I want to remind you to hang in there.
Over time, our son has shown us that birthdays should not be hard or sad. Or remind us of his delays. He has shown us how to best celebrate him, and that it’s OK if that doesn’t look “typical”.
This past year, our little six-year-old had the best birthday celebration to date. Friends brought his favorite things: old keys, wooden treasure chests and tons of other pirate paraphernalia.
He was so happy.
He still didn’t eat the cake, but he did request the birthday song multiple times and all of our friends and family indulged him in several rounds of the tune. The look on his face while we sang to him was better than the byproduct of any cookie-cutter birthday party I had imagined in years past.
Attending his peers’ birthday celebrations was and remains a whole other ball game. Our little guy doesn’t understand this it isn’t his day. He believes candles should be blown out and presents should be opened, simple as that.
We’re navigating these events more smoothly with visual schedules and a lot of planning ahead. This usually means bringing his own candle along so he can blow it out and staying for a brief visit before he gets overwhelmed. Knowing what is ahead is huge – we don’t want to be bothersome to the party-planners but most often need to know the details for the sake of EVERY invitee’s enjoyment.
We’ve learned to not only try new things, but to revisit old tactics that may have not worked the first time around. Keep trying all the things: silly, practical, innovative and traditional.
I can’t tell you how many times things have gone differently than I expected them to. These moments often times felt like a failure. Now I know they were just stepping stones to get us where we need to be. It’s all worth a try to make our boy feel strong, calm, and happy.
Progress will happen. It just might look different than you had imagined. Be careful not to miss it.
Your child will grow and change. And you will too.
You will learn how to best celebrate them in a way that is so incredibly special to them. It doesn’t matter if they aren’t interested in the latest Marvel characters, sports teams or Disney princesses.
I will celebrate my little pirate and continue to round up old keys for him forever if that is what endlessly fascinates him and makes him happy.
Now, we celebrate BIG. No more comparisons. Our boy is in a league of his own, right where he belongs.
“I would not change my son for the world. I would change the world for my son.”
I came across this quote the other day and it reminded me: This is why I share my son’s story. There is so much about his autism experience that is out of my control. What I can do is spread awareness and hope that it leads to a little understanding, patience and compassion.
Many people are unaware of the reasons behind some “autistic behaviors”. Autism affects communication, social development and sensory processing, with the degree to which these areas are affected being unique to each individual.
Sensory processing difficulties are really hard to understand because the triggers can be invisible to neurotypical people. I am slowly learning more about the triggers and sensitivities in Wilson’s world.
He is very sensitive to bright lights and certain sounds. He has left the room screaming or cowered in my lap over noises that a random toy will make.
He is very particular about what clothing he will wear and what foods he will eat. He often studies toys or objects by turning his head completely sideways or upside down.
He seeks movement and pressure and likes to bump into people or be wrapped up tightly in hugs or blankets.
He is learning ways to cope with his anxiety and sensory reactions, like chewing on something or taking deep breaths. Sometimes singing a familiar song will help.
Many people with autism find comfort in routines and repetition, just like Wilson. He says things repetitively, plays with toys in the same manner or repeats little scenes over and over. He gets irritated if we take a different route to therapy or home. His memory is truly incredible.
When his sensory system is overloaded, he breaks down. His first reaction is to scream. His screams have reached an all-new high pitch. He usually becomes limp, hits, or tries to run away. Sometimes he’ll hit himself in the head, slam doors or push furniture down.
People stare and make snarky remarks. Luckily, this only bothers my husband and I.
Wilson doesn’t read other’s emotions well or understand the comments. Someday he will though.
So let’s talk to our kids about how all their friends are unique, and that it is a beautiful thing. How we all learn at a different pace, and speak in distinct ways, but can still have so much in common with one another.
All children could benefit from a friend to help them overcome challenges and build confidence and self-worth. Let’s teach them acceptance and inclusion.
Let’s change the world.
(originally posted: April 16, 2018)