23/07/2024
My podcast partner in crime, Megan Barrett wrote the following post today. Her words so perfectly describe the battle. The high of being able to clear a hurdle and then the devastation felt when we face it again. Thanks for giving words to this phenomenon, Meg. đź’•
“One thing they don’t prepare you for when you have special needs kids is situational nature of their success.
They will make huge strides, and overcome obstacles you never dreamed they would attempt to conquer, and you gain this bizarre sense of confidence. They did so well at home, or in a controlled environment! You push the boundaries a bit, and they nail it. You repeat it, and are successful again, and again, and again! You’ve got this thing mastered. You decide to take this show on the road.
Then, once you are in the real world, a variable changes. Its’ too loud, or not loud enough, a food just isn’t perfect, you can’t find a charger, they only have paper straws. And all the air begins to leave the room. You see the signs of distress, the walls start closing in, and you feel like a fool for ever thinking it was safe to leave the house.
In an instant you watch as the eyes of all the people who have lovingly supported and cheered you on from the sidelines widen, their jaws begin to drop. “I thought things were getting better?!” “Didn’t you say he could handle this?” “I had no idea it was like this.”
Realistically, when you are starting off with such a huge deficit, you have to celebrate every tiny baby step forward. You have to, or you will drown. But the insidious thing about progress is the hope that it brings. Hope for normalcy, hope for friends, and relationships, hope for a meaningful life that isn’t dependant on or curated by me.
In a moment, all that falls apart. Places you thought were safe, where you could breathe and let you’re your guard down for a moment, suddenly aren’t. The rotating list of things you felt empowered to try next grinds to a halt. And back into our bubble we crawl. To the place where he is safe, no one can hurt him, and he has a best friend. Even if that’s me. We will sort rocks, and measure cat fur, and perseverate over random nature facts, because that’s his happy place. And his happiness is my happy place.
We accept that we will miss opportunities, and lose relationships. We don’t expect anyone to understand, or to take on the task of accommodating us. But the tears on the drives home, or locked in the bathroom wear on you. Putting on a brave face for him to feel brave is hard, harder than I expected it would be.
Not having the life I planned is something I accepted LONG ago. It’s just not in the cards for me. But learning to not get my hopes up too high for these kids has proven a much more difficult thing to master.”
