Hi all! I hope you had a nice long, holiday weekend! I want to apologize that I did not update you all sooner on the Special Education Assessment. That day was crazy!! While Jackson and I were at the assessment, I received a phone call from our kids’ school stating our oldest needed to be picked up immediately as a classmate tested positive for COVID-19, so we had to self-quarantine our oldest as a precaution. As you can imagine, working full time and having our 4 year home with us did not leave a lot of free time for much else! I am happy to say he remained healthy during his quarantine and so did all of us. He actually went back to school today, hooray!!!
So, let’s get into the assessment. I could sum up the day in one word…terrible, but in full honesty, that is what we wanted. As I have stated previously, even though Jackson has Fragile X Syndrome, an intellectual disability that will never go away and is part of his genetic code, he does not automatically qualify for any of these therapy services. So, to qualify for services, your child needs to show they truly need them…again being intellectually challenged apparently isn’t enough.
We arrived at the school and it was discussed that Jackson would go into a room with two therapists while I met with the coordinator, answered more questions and talked through how his assessment would go. This was perfect, because Jackson is very nervous and anxious around new people, so right off the bat he was in tears and very upset. This absolutely broke my heart, but I needed to hold it together, because what I needed him to do was show what life is like for him and us regularly, so these people could understand his/our struggles. I also knew if he was so upset, there was no way he could perform the tasks they were scoring him on, so in turn that would help us. After I got through part of the paperwork, I was reunited with Jackson and boy were we happy to see each other!! He sat in my lap and tried some of the activities they asked of him. Some he could do and others were not possible. At one point, one of the ladies asked me about his speech and if he could say certain sounds and such. I said he does say “pop”, but it isn’t consistent. She tried and I tried and he wasn’t having it. Finally, I saw she had bubbles, so I asked her to get those out. Low and behold, Jackson said “pop”. To be honest, he had to have said it about 20-30 times. You are probably thinking, Lesley, you are crazy! You don’t want him to say “pop”, he might not qualify! With all the doom and gloom you are put through having a child with special needs and trying to ensure they qualify for services, it is OK to celebrate these things and they SHOULD BE celebrated! He has soooo many other things he is behind on, that I think everything will work out the way it is intended. We also know that Jackson can do a lot more than what those folks saw, but they are not consistent behaviors and also aren’t age appropriate, meaning he is behind on those things associated with being 2 almost 3 years old.
The next thing we did was meet with an Occupational Therapist and a Physical Therapist. Oh boy was he excited to run around in this cool room! There was a mini-trampoline that he loved and they let him play with balls. He loves to throw/hit balls. During this assessment, he actually fell twice and hit his head both times. Obviously I never want that to happen and they felt terrible, but again, these are things they need to see. His coordination is not always the best. He just got orthotics about a month ago and those have helped, but Fragile X kids also have poor muscle tone, so I am actually glad that did happen. After falling a couple times and already having a rough go of it during the first part of his assessment, he really did not want to sit or cooperate, so we ended the day. We left the school with a few more documents that I needed to fill out and mail back, which I did in 2 days.
So, you are probably thinking get on with it already, what are the results. The results are…we don’t know anything yet. In the state of Missouri, they now have 60 days to review everything and provide their determination. First Steps will stop providing services to Jackson effective October 19th and effective the 20th, the school system should pick him up, if he qualifies. For now, we continue saying our prayers that they will have a determination that he qualifies and that we get that before his birthday to avoid any gaps in services. Due to COVID-19, there are a lot of families that are in the same boat waiting to have their child’s assessment and get their results prior to their 3rd birthday. However, there are a lot of kids that won’t have their results prior, so they will have a gap in services. I know my opinion does not matter, but that is not right at all. None of these children can stop a pandemic and it is not their families fault that everything shut down. If anything, the state needs to step up and if any child will not have their assessment completed and a determination in place by the day they turn 3, Missouri First Steps should be continuing services until the school district can pick these children up.
I pray that all of you and your families continue to remain healthy!
XOXO
Our Fragile Xperience 