Hi all! Hope you had a nice Memorial Day Weekend and are staying healthy. We spent the morning with the boys at Lone Elk Park, where they have lots of elk, deer and bison walking around the trails. We were lucky to see a lot of elk, some baby geese and even found a turtle walking around on the road, so we moved him to the grass. Then, we spent the afternoon playing with our splash pad in the backyard before the thunderstorms rolled in. A pretty nice day!
So, last time we talked I mentioned our meeting with the school district to start the process of transitioning Jackson from First Steps to the Public School System. For those of you that might just be joining us for the first time or maybe you are a regular, but don’t remember First Steps, they are Missouri’s Early Intervention system that provides services to families with children, birth-three years of age, with disabilities or developmental delays. The catch here, is not all children will qualify to receive services just because they have a disability or delay. They go through an assessment process and then a decision is made on if they are eligible. Luckily, Jackson qualified last year and has been in the program ever since receiving ABA, Speech and soon Physical Therapy and it has been such a blessing for all of us.
Sadly, Jackson will be turning 3 later this year and will phase out of the First Steps program, so we had a meeting with the school district and all of our therapists to talk about Jackson and start the process for his transition out of the program and into school. I say sadly because the services he receives are so personalized and one on one sessions and we just love his therapists, so it will be hard on all of us.
Our first meeting proved to be a lot harder than I thought it would be. I was pretty emotional the entire time talking through Jackson’s day to day struggles, because while he has made huge strides there is still so much more he needs help with. The woman asked us a ton of questions, but the one that hit me the hardest is a question that we do not get asked a lot and I kind of wish we did, because then people would truly understand a day in the life of us. “Describe to me about a day where you go out to eat or to a place other than your home. What is that experience like for all of you?”
“Describe to me about a day where you go out to eat or to a place other than your home. What is that experience like for all of you?”
“In a word, stressful.”
Honestly, we would much rather stay home than go to the zoo, a party or a restaurant, because with Jackson we know our calm time is limited. He will do well in the stroller for a while, but will want down. When he gets down he will want to run and he is still not the most stable with running and will usually trip, which will cause him to get frustrated, which will turn into him banging his head on the ground or a wall. If you put him back in the stroller he will of course be upset and try to gag himself to the point of throwing up. So, you also need a few extra outfits just in case. Since he is still learning how to talk, he will scream at times and you can’t predict it, but needless to say if you are in a restaurant and it happens, you will get all the stares or mumbles of people thinking/saying, “Why can’t you control your child?” Or “Why did you even come to a restaurant?” Well, we want to have a “normal” life, but this is our norm and wouldn’t change it or him for the world! We apologize for the inconvenience our child’s syndrome is causing you right now, but he cannot help it and all he wants and all we want for him is to live his best life without the stares or judgment.
At the end of the meeting, I was in tears just thinking about everything, but Jackson is truly the sweetest boy and deserves the world and we will do whatever we can to give it to him. We now have to wait for the school district to review all the notes and make a decision on IF Jackson qualifies for any services through the school district, if so, what services and how many half days a week. However, they don’t have to have this all decided until right before his 3rd birthday, which does not give us a lot of time to figure out transportation to and from school and his current daycare or other services outside of the district if he doesn’t qualify. We don’t want to have any gap in services, if it can be avoided.
We are hopeful that he will qualify for services and will keep you posted on this journey.
XOXO
Our Fragile Xperience 