Every year April brings what is now called Autism Acceptance month. April 2 is always World Awareness.
Anyone that knows me, knows my passion involves helping people. I’ve watched my own son grow up with multiple diagnoses and transition to adulthood. We’ve experienced nice people but also unfortunately a lot of judgment from strangers and even professionals who should know better. The things strangers feel entitled to tell others are despicable.
My son is an adult now and there is a new set of expectations, judgments, and social programming. So, when (not if) you interact with someone on the spectrum, have some patience and understanding. You might be surprised that ‘their world’ is pretty amazing.
I can tell you exactly the day this shirt came to be. In 2013, I ordered an autism awareness shirt for a fundraiser for a special needs music program for new equipment after a fire. The shirt arrived and my son saw it.
‘Autism?? Isn’t that what I have?’ I told him yes. He stood there for a moment then ran to his room. He came back with paper and markers, proudly announcing he was making a shirt for autism awareness. When he finished he said, ‘I drew Archie but not like he’s supposed to be cuz it’s ok to be different'.
And it stuck.
He asked for shirts to be made, I had no hesitation! This was definitely one of those proud mama moments. He wore his ‘Archie shirt’ until it wore out. I still have mine.
A 13-year-old who wanted the world to know that “it’s ok to be different”. He is such an amazing human.
In 2009 the official Autism diagnosis came. There were a lot of emotions and tears and the need to press restart was hard. I tried to deny the facts but that served nothing.
Now what? I started researching, taking classes, reading books, adding natural supplements, and anything to help my son. The services kids have available today were not available back then.
Years ago when I first heard that April 2 is World Autism Awareness Day, I was so excited about more people learning, understanding, and finally accepting. As the years went on, I realized I was just starry-eyed and naive, I was wrong and it felt disappointing. It’s a lonely feeling place to be.
I never wanted another parent to be put down, judged, or treated the way I had been. The verbal attacks, snarky comments, looks, and whispers. And unfortunately not just from strangers. There were way too many throughout the years.
Looking back, I don’t know how I got through some of those days. Most days it was just doing the best I could at any given moment. I never had grace for myself, I cried a lot and felt like the worst mom in the whole world. I blamed myself for his struggles.
In 2014 I happened upon a two-day healthy kids seminar. The information they presented made me review our medical records, made me start to question everything, and forced me to dig deeper, why did I not already know all this. Yes, I cried, again, and once again felt guilty for what my son was going through.
I was always told autism is genetic and I desperately wanted to hold onto that theory. Many years of struggles and stacking of one diagnosis after another with really no answers led my son to genetic testing. The result was a zero match to anything in the University of Minnesota. Yet he has the traits and the neurology to qualify him for the Autism diagnosis and a ton of Autism related services.
I couldn’t deny it anymore, I had to open my eyes, embrace whatever information came to me, remove the cognitive dissonance, and allow my mind to open. No matter how hard it was.
Some days were really extremely difficult. Sometimes it’s not fun. At all. It’s energy-draining, lonely, and exhausting. But there is no other choice in order for my son to heal and move forward.
We have awareness. Autism has touched many lives on so many levels. Acceptance is better. Kindness and inclusion could still use some work. When you see a parent struggling, OMG just be nice!
Parents: Start. Asking. Questions. !!
Question your doctor, question the school and know exactly what is going into your child for food, water, supplements, cleaning supplies, body care, and lifestyle. It all matters.
Have an unpopular opinion. Stand up for your kids. It’s ok.
13 years ago I wished I had someone experienced to help me.
Think about the future.
Waiting lists. Diapers. Communication. Sensory integration. School. Graduation. Transition. Guardianship. Vulnerable adults. Employment. Adult expectations vs emerging skills. Stages of Change. Vocational rehabilitation services. Social rules and programming. Relationships. Housing. Life skills. Finances. Waivers. SSI. You are aging, what happens to the kid. The list goes on and on.
The road has been bumpy and sometimes very dark but I’m extremely proud of what my son has accomplished, where’s he at now, and excited to see what the future holds for him.
Being open with him and talking about his diagnosis based on his strengths and challenges, not - who - he is, has been important. He views the world differently and to see through his eyes would be a beautiful thing. He sees the good in everything, has the kindest soul of anyone I’ve ever met, and he is one of the happiest and most energetic people I know.
The meaning behind this shirt still rings true today.
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