ANTHONYRetrun to 22q Stories
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Anthony was diagnosed with DiGeorge Syndrome at birth. By the time he went to school the health issues were minimized (T-cell count is the only major issue). Anthony was given an IEP in Early Intervention (age 3) and at the end of 1st grade his school took it away because he was making progress. In 2nd, 3rd, and 4th grade he was continually denied an IEP. I applied for Anthony to participate in a research program at University of California-Davis M.I.N.D institute (Principle Investigator: Tony Simon) and was accepted. During his 5th grade year we traveled to UC-Davis and received the reports needed to reinstate his IEP. Needless to say, they were VERY different from the school district evaluations. After holding Anthony back in 5th grade for an additional year in the school that robbed him of his IEP (big mistake – NEVER hold a child back, rather make the school do their job!) – he is now in 6th grade and his [modified] test/assessment scores are clearly NOT where his present levels of performance is. We were presented with an “Agreement for Compensatory Services” by the school district because he is clearly behind in math and reading skills in addition to poor social/emotional and speech issues (from not getting special ed services). It was hilarious because they acknowledge our claim of withholding FAPE, but then deny they did it, when throwing us compensatory services ($200/month) for 30 months to make up for the years (during his prime developmental period) of services with the disclaimer that we can’t sue them. We asked for him to go to a therapeutic day school (Cove) but NOT to our surprise we were outvoted (yes those jerks voted – I have it on tape because I tape record IEP meetings). Now he is at a sloppy seconds middle school in district that isn’t providing the services or following the IEP. Bottom line, most people don’t know about DiGeorge Syndrome. Schools don’t know or care to know about DiGeorge Syndrome.