Once your child ages out of Early Intervention there are several factors that will determine how much help they will get from local services. The underlying cause of your child's Hypotonia, the severity, your school district and of course the teachers and administrators. Your child's disability is looked at very differently and just because they qualified for EI services does not mean they will qualify for Special Education services.
I happen to live in a district that is known for a very stringent Special Ed department. Despite the fact that my daughter had been receiving EI services most of her life she did not qualify for Pre-School Special Education services.
When evaluated, my daughter completed the tasks "good enough" to score a rating that would deny her services. She was evaluated at home and on a day that she didn't attend school. Even though by their "standards" she could handle a normal school day I knew she could not. I knew that when faced with the daily task of attending school all day she would completely fall apart.
Legally I could fight this decision but I wasn't really sure what I was fighting for...... A 503 plan? Ok, what do I ask for? A shortened school day, help sitting at a desk, walking to the lunch room, with gym, on the playground, writing???? She had never been in a Kindergarten environment before so I had no idea what Kindergartners do none the less what my daughter was capable of!
My other option was to send her to school and let her fall apart and then go through the Special Education process again. Kindergarten is your first real exposure to formal education. I feel it is the foundation on the building of formal education. I didn't want this to be a bad experience for her. I struggled in school and I wasn't going to let this happen to my daughter.
Fortunately I had reached out to a local agency that helps with the Special Education process. I am not sure every area has this resource but I highly recommend finding out if you do. Finding them can be a bit of a challenge so look deep. I made a lot of phone calls and finally found the right combination of search words on the Internet to uncover an agency that was able to help.
Once I found help I was given advice on questions to ask and they made me aware of all of my options. Based on their advice I decided to set up a meeting with the Principal and request a meeting with her, myself and my daughter's kindergarten teacher. The meeting was to discuss my daughter's disability and ways to help her get through the school day. The meeting never happened because the principal was not open to working outside the Special Education process. Her solution was let my daughter go through Kindergarten screening (during the first week of school) and if she still didn't qualify for help I could pull her out. I was not happy with that solution and decided to hold her back a year.
I am now going through this process again and am much better prepared. I cannot hold her back again so I have to fight harder to get her help at school. I plan on arming myself with an advocate this time! I also came across a great article about help at school for kids with Hypotonia. I found this helpful to look at different areas at school my daughter might struggle. It also talks about how fatigue impacts kids with hypotonia. Which is such a huge factor and very often forgotten.
http://handskillsforchildren.com/ot-bits-bytes-hypotonia-strategies-for-success-at-home-and-school/
For those of you going through similar issues good luck!
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