My son, Stalen, was diagnosed on the autism spectrum at 21 months old. He is now almost six and non-verbal. People always say to me that they think things (autism) will get easier as Stalen gets older. I really hope they are right! But, I don’t think that’s entirely true. One thing that I have learned since his diagnosis on January 16, 2017 is to never ever underestimate autism. Sometimes we win a battle but the fight always continues.
I don’t think autism will get easier. That’s not me being negative—but real and truthful.
I think as Stalen ages we will face new challenges, like school and puberty and who really knows what else? It always seems when we get one area under control another gets out of control. It is hard to find a balance living with autism. There may be a good day, a great outing, a fantastic haircut, an awesome supper . . . but it is always there whether silent or in full force.
While things may not get easier, I believe that we will be smarter. I know more now about my son and his condition than I did two years ago. It’s the little things that have become the big things.
I know when he gets a cold and doesn’t eat for 16 days not to panic. He will eat again when HE wants to. Everything is his way, his terms and that’s just the way it is whether I like it or not.
I know that the professionals do not always have the answers and they may never have them. They only see a small snapshot of my son when he is before them and EVERY kid on the spectrum is different. What works for one may not work for another.
I know my son best regardless of what anyone else may say or think.
I know good intentions may come in the form of unsolicited advice and opinions are just that.
I know people will come and go from our lives and that will be their choice. We are a package deal.
I know I must always do what’s best for my son and our family.
I know when I find something Stalen really likes to buy lots of it, like shoes, certain foods, and flashcards. When my boy loves something, he loves it beyond measure.
I know having two bottles of ketchup in the house is a minimum.
I know being his person is exhausting and draining but he is also amazing and has chosen me.
I know there is more than one way to do something. It’s about finding what works for us.
I know I can give a haircut in the comfort of my kitchen with a $10 razor from Walmart and it looks good.
I know my son is more like your child than he is different.
I know there is no greater bond or purest form of unconditional love than that of a special needs parent (or caregiver) and their child.
I know surrounding yourself with the right people—your “me too” people—and building your community will maintain your sanity and help you through those really dark days.
I know there are no bad experiences, only learning opportunities.
I know I can prepare him for anything—bloodwork, hospital stays, EEG, MRI, casts, plane rides, moving to a new house.
Milestones will come and we will be ready in our own way.
I know hope is brighter than darkness and positivity will sustain us as we climb the tallest mountains.
I know crying is part of this journey and some days will be really hard. I know this emotional rollercoaster will never get the best of me because I won’t allow it. I may be crying in the bathroom eating cookies but this is a minor setback and tomorrow I’m bringing my strongest game.
I know he is capable of so much and together we are unstoppable.
I know education and advocacy are the best things I can do for my son and others living with autism.
I know no matter the negativity or discrimination we encounter, we will always be OK and get through it.
Autism is a lifelong condition and I know each year I will become smarter and stronger and we will continue to share love, laughter and live our best life—and that’s all that anyone can hope for.