They say autism is a spectrum of symptoms varying in severity and functionality. They don’t tell you about the spectrum of disappointments, exasperations, fears and worries that will always be a part of your parenting journey.
They say autism is a communication disorder. They don’t tell you about the disorder and isolation that will turn your life upside down.
They say many autistic children like things in a certain order or made in a certain way. They don’t tell you how exhausting it is for you as a parent not to be able to do things spontaneously without facing a major tantrum.
They say temper tantrums are very normal for individuals on the spectrum. They don’t tell you about the nights you’ll spend crying, wondering if there will ever be a stress-free day in your parenting life.
They say ASD children need love and understanding. They don’t tell you you’ll need that same amount of love and understanding yourself to carry on.
They say ASD children have trouble making and keeping friends. They don’t tell you you’ll start losing your own friends too.
They say some autistic children can have attention and hyperactivity issues. They don’t tell you you’ll be craving 5 minutes – just 5 minutes – of peace and quiet a day.
Autistic children are special indeed, but autism is a very lonely and foreign place for a parent. Though there may be hope, that hope waxes and wanes very unexpectedly. As you seek to make every day as systematic and predictable as possible for your ASD child, the outcome is almost always unpredictable.
But as parents, we never give up. We never stop believing things will get better one day. Yes, we accept destiny with a full heart but we all (secretly) wish we could have just one “normal” day for a change.