When I would see the letter from the school requesting the quarterly Individual Education Plan (I.E.P) meeting it was a bit like seeing a letter from the IRS. You open it, slowly and check the date on your calendar and like most parents start to mentally prepare to do battle and fight for what your kids need versus what the budget planning has allotted for them.
I liken it to entering a room part lawyer, part Rambo and part Mom. There is only so much money in a school budget for all kids, not just special needs. However, it takes about 2x the cost to educate and assist a special needs kid so you must know what your child is entitled to before entering the room.
I always dressed for success and at times projected a very no-nonsense demeanor to get both of them the speech, occupational therapy and Physical therapy they needed. The teachers and aides that worked daily with my kids were some of the best most kind-hearted souls put on this earth. To this day they are still amongst our family friends and will be forever. I always felt bad for them because they all wanted to give our kids everything they needed, and it seemed that they were not allowed to concur with a request made by the parents or face the wrath of the chairperson in the meeting. The chairperson rarely gave in without a fight and it was obvious they had an agenda. It was a matter of trying to give the least services possible so that they had enough money to cover all the kid's needs.
I would recommend asking for an advocate if you feel your child is not getting the services they need. Robin needed a 1:1 aide and pretty much didn’t get one until she pulled the alarm bell in one school, and it was apparent the aides had too many kids. I’ve never been prouder. Ha!
I did my homework and found out my kids were entitled to be tested by an outside independent neurologist specializing in Autism. The district had not performed the testing, so we had them pay for the testing. In those days, once you had a professional independent evaluation that recommended what the child needs for support the school district needed to meet their needs. In the case of my daughter that meant sending her to a special school that could provide the support she needed. The Kingston Annex was a life raft and the teachers there were able to help Robin gain more speech. They had budget, experience and tools to give her the support she needed to thrive. I can’t stress enough that you as the parent are their voice, and without you there will be less services. My kids are much older and along the way we were lucky enough to find the best of the best within the Wappingers, Kingston, Yorktown and Massachusetts school systems. They have my deepest respect, it’s not a job for the faint hearted.
Joshua was misdiagnosed at an early age with delayed speech and was later reclassified as high functioning Autistic but that’s a separate story. Don’t give up the fight, get educated in entitlements, get an advocate, and know that every I.E.P. meeting can change the trajectory of their lives. Remember you are their voice. Talk to other parents, you are not alone in your journey.
I would love to hear from those of you that are reading the blog, your thoughts, and experiences.
Please add comments and let’s talk – we all have different perceptions of these situations. These are my experiences and there are no right and wrong ways as there are no books on how to be a parent of a person with Autism. We all just do the best we can.
Much love, Jude
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