Hi all! I hope you are doing well and staying warm and healthy! We had snow this past weekend, so our oldest was super happy to be able to sled for the first time this winter. I was not so happy as I would rather be on a warm, tropical island, but hey, if he is happy, we are happy!
So, today I wanted to share some updates with all of you. I know I have shared characteristics in regards to Fragile X, some have been physical features such as the large ears, long face, prominent jaw and forehead and flat feet and of course, the intellectual traits like delayed speech, delayed in learning skills like crawling, sitting up and walking. However, I don’t know how much I have shared around behaviors, but honestly, behaviors are the hardest thing we deal with when it comes to Fragile X Syndrome. Jackson really struggles with Self-Injury behaviors and Aggression. When I talk about Self-Injury behaviors, I specifically mean head banging. We have spent so much time trying to monitor what causes the behavior, how to deter the behavior, etc. Honestly, we are tired of trying to dissect this, because what it ultimately comes down to is…there is nothing consistent on when or why he will do this. Then, a more recent behavior he has started to exhibit has been hitting/slapping. When I pick him up from school he is over the moon excited. He squeals and runs to me, but if I pick him up he begins slapping me and it is not a gentle little slap, he has left marks on my face. You might be thinking, “Then why are you picking him up?” Great question! If I do not pick him up, he takes off running down the hall and throws himself into the wall or the floor, so you decide which is worse him bashing his face into the floor or wall or me getting slap marks on my face. On a typical day we spend probably 80% of our time trying to prevent, deter, redirect these types of behaviors. Do you know how exhausting it is to race from one side of your house to the other to try and prevent your child from throwing his head into the wall or the floor and if you are outside have you ever tried throwing your face into the concrete ground, because Jackson has. Full disclosure, it is these self-harm behaviors/aggressions that prevent us from wanting to make plans or attend family functions where we know he will be over-stimulated, because it is just easier to stay home and not deal with it. I hate to be the person to miss a birthday party, holiday or any chance of gathering with people, but it is so draining.
I want to leave you with a personal story, so you can understand a little more of our day to day. When picking Jackson up the other day, he took off running down the hallway and one of his teachers just stared at him and when he threw his head into the wall, because I couldn’t get to him in time she laughed. It took everything out of me to not yell at her or cry. I had to hold it together, because I had my 2 kids with me and Jackson’s well-being was my main focus. This is what we deal with all the time. People see him do something out of the ordinary and to them, it is funny. To us, it is heartbreaking. If you are a childcare worker ask your employer if there are any children in the facility with Special Needs. Even if you are not a teacher in their classroom, it is information you should be aware of, so you can be informed on how to interact with child, if the situation presents itself. If you RUN a childcare facility, hold meetings with your ENTIRE staff to share specific information about Special Needs kiddos in your care. This will only help you and your staff successfully care for these kids and as a Special Needs Parent, it would mean the world to us knowing all staff is aware of our child’s situation and knows how to handle him.
As a parent to a child with Fragile X, there is a point where you realize that you are advocating for so much more than just special accommodations. You are advocating for your child’s quality of life. Once you realize that, you will see a side of yourself you didn’t know you had and you won’t give up!
Spread kindness, spread awareness!
XOXO
Our Fragile Xperience 