Special Education Assessment – Prayers Welcome!

Hi all! I hope you are all healthy and enjoying the last few weeks of Summer. As the school year begins, we are reminded that Jackson will be 3 this October and on his 3rd birthday he will be released from the First Steps Program, which is Missouri’s Early Intervention system that provides services to Jackson and other families with children with disabilities or developmental delays. As it stands today, Jackson receives 8-10 hours a week of ABA Therapy, 1 hour a week of Speech and 1 hour a month of Physical Therapy.

When a child’s 3rd birthday hits, they are released into their school district to POSSIBLY continue services. I emphasized the word possibly, because there is zero guarantee that he will qualify for services. That is the part that is the absolute hardest to deal with. It seems that each school district is different here. In some districts, if you have a syndrome/genetic disorder you automatically qualify. It isn’t all syndromes or disorders either, it is a random list. Fragile X is a GENETIC disorder. It is not going to disappear, a person with Fragile X will have it the rest of their lives. If you were to look it up you would see that the gene that causes Fragile X is actually the FMR1 gene, which is referred to as the Fragile X Mental Retardation Gene. So, to say those children need to go through an assessment to see if they qualify is ludicrous and just another piece of our education system that is broken.

This Wednesday, I will be taking Jackson to his assessment where he will be put through a series of play based sessions to see if he is delayed enough to get services through the district. It is one of the worst things to have to sit here and think I hope he is delayed enough or I really hope he does terrible, so they will qualify him, but what other options do we have? To continue all the services he currently has is so expensive and not an option for us, so instead we have to pray that the education system changes at some point or that he just has a really bad couple of hours to ensure he gets some services through the district.

As a parent of a child with special needs, we celebrate everything, big or small, because even the small things are huge for him and every single day he works so hard to achieve them. All we want to do is be happy and proud of all the things he has accomplished in his short time of all his therapies only to turn around and have to downplay it all, so he has a fair chance in getting therapies that he clearly needs to thrive. How messed up is that?!

If you have a few moments over these next few days if you could say some prayers or send some good vibes our way, we would greatly appreciate them. If you have some time to send an email to your local congress person to find out what they are doing to help children like Jackson that would also be a huge help. This is a fight we will continue the rest of our lives and we could use all the help we can get. Disabilities, Syndromes, Disorders they are not all cookie cutter and each child is different, but to make someone ‘perform’ for possible qualification into a program that should accept them instantly is a joke and needs to be fixed. It should not be based on each school district, which here it is. All children deserve a fair shot…not just typical developing children.

XOXO