I figured it was about time I give an update since diagnoses.
We just redid our IFSP (individualized family service plan) with Birth to 3 and changed some of our goals and frequency of therapies.
Gus is seen for OT (occupational therapy) 2x weekly, PT (physical therapy) 1x weekly, and Speech (speech therapy) 3x weekly now. He will also be seen at daycare 1x weekly for a while to see how that’s going, and will be seen at times at home, too. It feels really good to be getting him the help he needs to thrive.
We are traveling to LifeScape in Rapid City, SD, once weekly for 3 of the above mentioned therapy sessions. The others he does at the local school.
This should be our set schedule for a while now, but will all completely change come June when he turns 3 and is done with Birth to 3 Services. We have a plan for that time, but are still working out the details, and have a lot to get figured out before then. All I know is that there will be some very big changes for us for a while starting this summer.
I still spend some time every single day on the phone with the State, doctors, therapists, etc.
Yes, I still have to fill out paperwork all the time.
So, how are things going you ask? Really, pretty well. We are actually seeing some improvement with the therapy he has done so far. He is paying attention for longer periods of time, walking for longer periods of time without “refusing to have posture” (as we call it), and has quit biting mom, dad, auntie, and grandma! Therefore, he has already met one goal on his IFSP – He has quit biting!
We are always constantly working to understand his sensory needs and have purchased a few things for him to use at home, to include a trampoline.
We do our best to apply what we learn in therapy to his everyday life.
Now, onto the PECS thing in this blog’s title. What is PECS? The Picture Exchange Communication System. (Click the highlighted text for more information.) In a nutshell, it is a way for nonverbal people to communicate using pictures. Right now, we are working on showing him that if he points at or gives us a picture of what he wants we can help him get it or get it for him; It being whatever is on the picture. It’s a process that takes a lot of time, but he has shown some progress with it.
We know he knows things, but just struggles to communicate. For instance, he can look at a book of animals with an animal on each page and push the corresponding button with a picture of the animal on it. He has matched things for us before, as well.
He is going to be doing some specialized occupational therapy for eating and feeding at LifeScape. Not just fine motor skills for utensil use, but also finding out what it is about certain things he doesn’t like and why he has certain behaviors when he is eating. Since he has SPD (sensory processing disorder), it could be any combination of things to include textures, temperature, consistency, etc. It would be nice to get some things figured out so I don’t feel like I need a pressure washer to clean up my kitchen after evey meal.
We are also using some sign language as well for words such as “more”, “wait”, “stand”, “swing”, “bath”, “yes”, “no”, “all done”, “milk”, “drink”, “food”, etc. He has never himself signed, but I’m doing my best to always use the signs when communicating with him and practice hand over hand singing with him. I try to get his older sister in on it, too.
He is also saying something like “dooooh” (I perceive this as “no”) and pushing things away that he doesn’t want.
The older he gets, the more frustrated he gets, which is totally understandable. My heart breaks for him that he has to work so hard to do every day things we all take for granted. He will live a life of struggle, but with many accomplishments and things to celebrate, and I’ll be right there with him to struggle with him, help, and celebrate.
We have also found out that Gus’ lazy eye that was turning in pretty significantly has seemingly self-resolved. So, right now, surgical correction is completely off the table. Woo hoo! Also, unlike the rest of his family, his vision is great without any glasses or any kind of correction. I tell you, he dares to be different in every way. Yay, Gus!
I feel like I have finally come to a place of acceptance and am believing more every day that this is all meant to be and that I am exactly where I need to be. Life is feeling less scary, for now, anyway.
Until Next Time,