I had started out with one idea for today but it is going to take some time to put it all together. I commented on another fellow friend/bloggers website and it reminded me of my aunt.
My Aunt Bonnie has a fragile x son who is probably in his 40′s now. She lives in California and I don’t really have much contact with her. Okay, I have no contact with her. I would like to though. She is hilarious. I should work on that .
Anyway, she has her son at home with her. He is probably about the same severity as Matt. He is in the moderate/severe range. He talks but not on topic and perseverates a lot. He is potty trained to an extent. He needs help with wiping and he has to be told frequently to go to the restroom. Diarrhea is just a disaster! So he needs a lot of watching over and assistance. My Aunt Bonnie is married and stays at home with him. My uncle works as a mechanic and can take him in with him if he really needs too. But a fragile x person is a mechanics shop is a recipe for disaster . My aunt also has a daughter who is in her 50′s who assists with him as well. But she has her own family and works so the burden mainly lies with my aunt.
Before I had Matty, my aunt had a situation that made me realize just how tough it was for her to care for my cousin. My aunt had gotten a speeding ticket. With taking care of her son she had totally spaced it off. Well, she got pulled over for speeding one day trying to get her son to an appointment. By this time she had a warrant out for her arrest for unpaid fines. Her daughter came and picked up her son and Bonnie was taken to jail overnight.
I know. Horrible right!
Well, apparently not to my aunt. The next day when they went to release Bonnie she refused to leave! The sheriff told her that she had to go. They couldn’t hold her any longer, the fine was taken care of, and she should go home to her family. My aunt, obviously stubborn, sat down on the bench and told him, “No.” The sheriff was shocked. I mean, seriously, how many people refuse to leave jail!
My aunt told him, “You have no idea how hard things are for me back home. I didn’t until last night. Sitting in this jail has been the most relaxing and quiet day of my entire life. All I’m asking for is one more night. Just one to relax and regroup before I go back and tackle it again.”
Obviously, the sheriff couldn’t grant her wish and my uncle came and picked her up. Last I had heard my cousin was on 2 or 3 waiting lists for group homes that my aunt had approved of. She loves him very much and is very picky about where he will live out his days.
This story signified two things to me. One, that fragile x, or any development disability, may seem easy on the outside but living it is no piece of cake. And the second thing, respite is definitely necessary. My aunt never had respite services for her son. I hope she does know. Getting a break is so crucial. Could you imagine going to work one day and not getting a break for the next 20 years…not even to go pee!!
Though we don’t get actual respite services we do get a break. Matty goes with his paternal grandparents every other weekend. Rachel goes with her dad on those same weekends. So we get two days where we can focus on ourselves. And by the time the weekend wraps up we are re-energized and ready to tackle two more weeks. If you aren’t getting respite please find a way. Don’t go to jail to get it