My autistic brother Matt has been in a group home for about 5 years now. Begrudgingly, my mother decided that it was better for her to choose a home of her liking versus having us do it after she is gone. It was something that my parents put off doing until Matt was in his mid 30’s and they were their 60’s. It wasn’t an easy adjustment, but it was mainly good. Well, except for the scabies. That’s right, one of the care providers brought scabies to the house. This ended up resulting in my brother getting scabies which he needed 3 pesticide treatments for. He had a major allergic reaction to the treatments which caused his hands to blister, peel, bleed, ooze in a red angry rash. My brother went around looking like he had a flesh eating virus for the past 6 months. The care provider refused to seek treatment and kept spreading it to this group of people again and again until they were forced to let her go. My brother is starting to finally get better. It was something so disgustingly horrible that I find hard to describe without pictures. You wouldn’t want to see them anyway.
In response to all of this, my mother did some extreme allergy testing. This resulted in some extreme responses while we were up north this last weekend. First of all, the sun revolves around Matt. Remember me saying that last time up north when it was very hot Matt was angry because he couldn’t sleep? He wanted all of the fans off so my mom turned them off. So what? Who cares if he is angry? What, is he going to hurt our children like he hurt us? About the diet, my mom was going to wash off the grill after we made hamburgers just in case there was something in the seasoning that Matt was allergic too. That is too extreme. When he comes to my house he brings his own hand towel because he may be allergic to my detergent. That is too extreme. He also brings his own soap. That is too extreme. Matt is allergic to one kind of sugar and not another, but the canned food label only says sugar. Perhaps we should call the company and ask what kind of sugar they use. That is too extreme. He can no longer have baked beans because he is allergic to the pork now.
Mark and Carla decided to have a pig roast for their wedding in 2 weeks. Matt now can’t eat what they are serving. My parents asked if they could stay at Carla’s house for the wedding because of the special diet and linens that needed to be used for Matt. Carla said that she didn’t have anywhere else to get ready, to put on her dress. Emily passed on a word of advice to Carla that apparently I gave her, to set boundaries. Emily said that my mom asked her to ask what kind of butter was in the mashed potatoes on her wedding day. Emily is right, the bride has too many other things she has to worry about. Mom asked Mark if Matt would be the best man at the wedding. Mark just said that in passing a couple weeks ago because he hates being the center of attention. Tensions are high, no one is ready.
Recently, my brother Luke and I have been discussing taking our families on vacation this winter. I told Luke that mom might want to bring Matt along. He said absolutely not. I agree. I’m sorry, I can’t live like this anymore. If we decide this week to fly down to Florida, either my brother or I will have to be the bad guy. We love our mother and Matt, but this extreme favoritism just brings resentment from the rest of us. We have our own problems with our own kids. I don’t think that scrubbing down the grill is going to make a difference. I know mom needs to feel like she has some control.
I am sorry, I feel very angry today. I realize that parenting a forever child is difficult for the parents, but guess what? It is hard for the siblings as well. We spent our whole lives dealing with all of this crap. Just because you are martyrs doesn’t mean that we don’t struggle. I’m sorry to be so edgy, some bad things happened today that I can’t talk about now. I will probably be able to talk more about it tomorrow.