I have a beautiful sixteen-year-old daughter. She is sweet, kind, and pushes me beyond my level of patience on a regular basis. My daughter is cognitively delayed, has a mild form of autism, sensory integration issues and emotional dysregulation. She is, emotionally, a much younger child.
We have worked very hard with her and she, by the grace of God, has made amazing progress. Most people don’t even realize she has special needs when they meet her, but in the privacy of our home, the occasional meltdowns continue. She can be very rigid and likes things in a particular way. She has trouble understanding another point of view.
After one very bad evening (five back-to-back meltdowns) I was trying to deal with the migraine that her shrieks had brought on. I was, quite frankly, fed up! I was feeling frustrated and angry that as I tried to help her in her difficulties she continued to scream at me that everything was wrong! I didn’t know how to help her. I didn’t know what was going on inside her head. Then, she sent me the text that stopped me in my tracks and left me in tears…
“I wish people could understand what I am thinking. I think one thing and probably say it wrong, because I don’t know how to explain it the way I am thinking it, so I freak out. I hate it because then I get yelled at because I am freaking out. I freak out because I am stressing on what to say. I don’t like this. I wish I knew how to fix it, but I don’t. I hate it no one understands because no one can be in my head. I wish someone could. Life would just be easier. I also get mad because I don’t like change… I like it when I get to watch my tv shows on time because it’s just my relaxer from the day and it helps me to get tired for bed so when it gets messed up I freak because there is change. I wish I could just not freak out but I can’t my brain tells me to freak out because I have to have it one way only because that’s what I am used to. I’m sorry u wish I could not freak out and could explain my self better but I haven’t found a way to.”
I had often, mistakenly, thought that my daughter didn’t realize how her behavior was affecting the rest of the family. We have even told her that she uses her voice to ‘bully’ the rest of us. Her text opened my heart to the world she feels trapped inside. Inside her small body, a storm rages on.
So, the question becomes, “How can I use my Catholic Faith to help the relationship between my daughter and the rest of us?” The most obvious answer is to love her and pray for her. I remind myself (and the other family members) that Jesus was serious about that, “least of my brothers” thing.
In a practical way, we often hand-off the meltdowns to whomever she will respond to at that time. For some (unknown) reason, she will calm down or at least respond to one sibling over another when she is stressed. We need to provide the “Rosetta Stone” to her, so that she can be as interpreted (and understood) as much as possible when she loses control.
We also have to refuse to get pulled into her dysfunction! That sounds so easy, but when she is screaming for help and refusing that help or saying that the help is not correct simultaneously, it can be extremely difficult.
What has been most successful with her is doing an autopsy of her behavior when she is not experiencing an issue. Practicing other ways of coping or expressing herself can help her to help us understand her thought process. That is exactly what she was doing by sending me the text.
When I am struggling with her behavior, I need to remember how wonderfully childlike she can be. There is no more beautiful sight than seeing her lift her hands and singing a praise and worship song, or seeing her with her hands folded tight in conversation with God after receiving the Eucharist. In those moments, it is easy to remember that she is not only my child, but more importantly, she is His!!
Copyright 2015 Mary Lou Rosien.
Photo copyright 2015 Mary Lou Rosien. All rights reserved.