Today is May 1st. May Day…the traditional celebration of spring in the Northern Hemisphere. It is also the end of April…of Autism Awareness (or Acceptance as we prefer) month. The thing is that for the millions of individuals, families and professionals, who daily meet the challenges of life on the autistic spectrum…nothing has changed.
We are still trying to find clothes that are not too scratchy; where labels and tags do not feel like hot pokers burning through the skin; shoes in bigger sizes with velcro instead of laces (because even big fingers sometimes never learn to tie knots); socks that do not have seams which rub the wrong way.
We are still making different foods for them; struggling, begging and pleading with them to eat something, something nutritious we hope and pray; running out to the store in the middle of the night for that ‘one’ thing they want now, only to discover when we get back that they changed their minds.
We are still fighting the doctors, the teachers and schools, the therapists, the system, our families, our neighbors, total strangers and the whole ‘f’ing world to just make room for our child…and us.
We are still confused by the thousands of different therapies, techniques, options, treatment plans, ‘cures’ that are out there. How are we supposed to know which ones work? Heck, we can’t even agree if autism is a ‘disease,’ ‘disorder,’ ‘condition,’ ‘challenge,’ or just a wonderfully unique way of seeing and understanding the world in which we all live. And all we want is what is best for our child…so we spend hours every day searching for that.
We are still trying to manage the meltdowns. The public ones where the whole world is looking at us like we are the worst parents ever; the private ones where they kick, scream and call us names that are not only ‘inappropriate’ but hurtful; and worst of all when they ‘elope,’ just run off and we cannot even keep them safe. And we struggle to see these times not as our child being ‘naughty,’ but as part of the disorder/condition/whatever. And we struggle to calm down afterwards, to return to sanity, to slow our racing hearts, to tell ourselves ‘it is over now’ while they are happily off to the next thing like nothing happened at all.
So, today, may be May Day and a time to celebrate new beginnings for you…but for us and millions like us…it is just another day. We are still waiting for ‘spring’ with this thing called autism. We cannot forget about it for the next eleven months until it is time to wear blue or onesies, or run a race for charity, or bake cupcakes, or… Autism is an everyday part of our lives. And some days we struggle because it feels like autism IS our lives.
But we don’t want your pity, we just want what every other parent out there deserves…your understanding on those bad days. We need you to suspend judgment and say…I don’t know what they are dealing with or how I would handle it. And it is okay if you add… ‘but I am sure glad I don’t have to.’ We won’t judge you for that…if you don’t judge us. So enjoy your May Day…while we go on fighting every day for that awareness and acceptance for our children and ourselves.