A note to Special Needs Parents as we start this school year….
We’ve got this.
When the whole system feels like it’s failing our kids, you know who doesn’t? ….Us.
After all, what is being asked of us, isn’t impossible. Fun? No. Possible? Yes.
We’ve been given impossible. And overcome.
We have fought to find out “what’s wrong with our baby” when we – in our guts, have felt something was so wrong.
We have sat in a room being told a diagnosis after months of rigorous testing and cried a million tears before picking ourselves up and carrying on, because we have no choice.
We have given up sleep, because our kids don’t sleep. Whether it be alarms to have potty breaks, restless sleeping, nightmares, stress….. Exhaustion, it has become part of our character.
We’ve held ourselves together during meltdowns as we are punched and scratched and bit. We’ve had bloody lips and a bloody noses. We’ve removed our own hair from the fingers of our kids once the meltdown is over, thrown it in the trash and said “it’s okay”, as we pick ourselves up and finish making dinner like nothing happened. We remain calm until everyone else is asleep or distracted, then slip off quietly to cry in our shower.
We listen as people tell us how to parent our kids or what we are doing wrong, when we know deep down they couldn’t survive a day in our shoes – with all of the weight that we carry.
We have held our babies still during procedures. Told them it was okay, even though our insides were SCREAMING and pleading with God to make it stop. We have kissed our kid’s foreheads as they are swept back for surgery, and sat alone – quietly, just waiting for a physician’s update.
We have held our babies in our arms as they have had seizures or become unconscious, keeping our families calm, reminding the other kids who witnessed it all – that it’s okay, desperately trying to hide the fearful quiver in our voices and counting the minutes to know just when we need to administer rescue meds.
We clean up floors and toys once kids go to bed, not to keep things clean, but with the thought “if I have to call 911, I don’t want them to trip over this mess”. This, is a real possibility for us.
We have sat in IEP meetings, scrappy and defeated but never giving up the fight because our kids deserve more than okay – they deserve the chance of opportunity just like the rest of the kids – even though we are reminded daily, they are NOT like the rest of the kids.
We give up free time, date nights, friends nights and sometimes showers because we are the best to handle our kids in their challenging years – but also put that same kid on a school bus praying they’ll just be okay and safe that day.
Every day, we send our kids off, and the fear of “what if’s” hit you just as hard as that very first day. We know it will never go away. But we pray every day that they stay safe, and okay. And even though the “break” is nice, you want to squeeze them tight the second you see them. (Oh, but you can’t – because they don’t love physical touch which reminds you of the pain every day, feeling like the kid you fight for, doesn’t feel connected to you at all).
We handle so-so much more. So much more than we could ever list – or I could list in one short blog post.
So, this year, as the school year starts out with uncertainty and an overwhelming feeling of being left behind… we will be okay. We are used to handling this. We are used to picking up impossible pieces and marching on. We are strong, we are capable. We are special needs parents. This is nothing, we’ve got this.
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