When you have a severely autistic child, it naturally comes with a hearty dose of isolation. Basically your child is so destructive or different or hard to deal with that most normal people don’t want that child over at their houses!
Sometimes it makes me feel very sad. Like no one around me really wants to bear my burden and help me out. They all care more about their houses and the stuff in their houses than they care about me and my child.
But at the same time, I don’t really blame them. If I didn’t have a severely autistic child, I probably wouldn’t want one in my house either. They mess up everything! It is a beast of a job cleaning up after them because of their sensory desires.
Even Family Members
Even my own family members don’t really want my child around. They would much rather live their nice lives without a terror like him pushing their patience to the max.
When I see family members excluding us from things because of my child, it is hard not to let the resentment start building. Especially when they are family members that pride themselves on being super “christlike” and righteous.
I’ve found that the best thing I can do in these situations is to just find my own happiness. We do a lot of things with just our little family. We don’t go to a lot of parties. We don’t go on the extended family vacations. We just try to create our own happiness where we are.
Bearing other’s judgement
A lot of times these family members will say things like “well if you just disciplined him better he wouldn’t be so wild.” Really? Do you want to try it? Do you want to take my child for a few months and see if you can make him act better? Please be my guest!
But really…you don’t think I’ve already tried all that? You don’t think I’ve already tried time outs and spanking and taking away preferred things? It’s kind of disheartening to hear what people think of you when you have a child like this.
Fear-inducing
It’s actually pretty scary to have a child that no one else can handle. A burden that no one else is willing to help out with. Even the public school system here in Southern Utah can’t handle my child very well. Let’s just say that at public school, he learned that hitting and screaming gets him what he wants. So now we have him back in a full-time ABA school.
But still…when staff gets sick and the ABA school cancels on me, it is scary. I feel the anxiety rising. Because there are few people in my circle of friends and family that can handle my child. And having a small support system is quite frightening.
Someone who gets it
Recently we moved to a new area of town and there is another family that has an autistic child. They invited us over for dinner. It was INCREDIBLE to be in another person’s house that was autism proof. I didn’t feel like I had to watch my child every minute to prevent catastrophe. They already had big locks on the doors so I didn’t have to worry about my disabled child running away. It was heavenly.
A few months later, we had that same family over at our house. And it was great as well! The mother said to me “Maybe we should just keep inviting each other over and switch off every month or so.” And I said “YES!!! I would absolutely love that.” It is so relieving to find ONE family that gets what you are going through. And it is amazing to find another family that can handle having your child over at their house.
To all of you with severely autistic children, I hope you can find another family like this. If not, just know that I understand the pain and the heartache. Keep going and keep your chin up if you can!
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