Hey all, sorry we haven’t updated you on our progress with the Parent Empowerment Program in a while. Between quarantine life and both of us still working full time things are a little chaotic in our home as I am sure you all can relate!
So, last Thursday we finished week 4 of 12 and I have to say we are definitely learning a lot. Chapters 4 and 5 were mentioned to be more of a review for us as Jackson has been in the program long enough to have mastered some of those skills, but as parents of a Special Needs kiddo, we hadn’t mastered those skills. One big takeaway I had personally was how I interact with him a lot of the time. When we are on the ground playing he sits in my lap a lot of time or I put him there when I read to him, but he really needs to sit across from me, so he can see my face, make eye contact and learn from my words and expressions. When I put him in my lap it was more for me to control him and make him sit and listen, because he normally tried to run away. So, that was how I tried to get him to focus. Now I realize that doesn’t work for him. When you think about it, it totally makes sense that in order to learn, mimic and grow you need to be able to see someone’s face, but when Jackson is not focusing and throwing a tantrum you forget that big piece of information. So, I was glad we still went over the “refresher” course.
We also had two chapters that talk about setting up activities for him, taking turns and getting in the spotlight. Let’s get inside Jackson’s mind for a minute…when Jackson is intrigued by something he gives it his full attention and nothing you say or do can get him to turn towards you or focus on you, so in order for him to move to a new activity you need to get in his spotlight to grab his attention. For him, bubbles is a big attention grabber, so you get a bottle of bubbles and start blowing them. He will turn to you and now you have his attention. From this point, give him a chance to react and respond. He now has the ability to communicate with us more by signing or smiling or just make eye contact to let us know he wants to keep playing with the bubbles. When we think he has had enough or we have had enough, we say something like, “Ok, last time and then we will go do….”. That lets him know we are closing that activity and at that point it makes it a lot easier to transition him to something else. You might be asking why he needs to move to other things, but with Fragile X, Jackson gets to a point of repitition almost an obession with certain things, so if he just continues with one of those games/items he won’t have the opportunities to learn all the other things he needs to.
Now, this week we have our transition assessment with the school district and our therapists. Fingers crossed that things go well and that Jackson will be able to continue receiving services once he phases out of First Steps and into the school district!
As I sat here typing this, I was listening to Casting Crowns – Praise You in this Storm. Seems fitting for where my mind is at with everything we are dealing with right now. Give it a listen!
XOXO
Our Fragile Xperience 