Navigating IEPs

February 26, 2012

Another guest post for you today - apparently I'm getting lazy :-) - or rather I have an amazing network of informed women that just can't wait to share their vast collection of knowledge. Today' s post is from Janine, who blogs at and her daughter Josslyn is in the Our Beautiful Butterflies post. 

One big challenge most parents of girls with TS and Special Needs children face is the dreaded IEP meeting. By the time our children are ready for their school district we have so many acronyms thrown at us we have no clue whether we are coming or going. Hopefully after this you feel more empowered to make the best out of the IEP to help your child achieve their educational goals.

First of all IEP stands for Individualized Education Program, SLP is your Speech Language Pathologist , OT is Occupational Therapist, PT is Physical Therapist and you can find more here:

Knowing some of the basic terms ahead of your first meeting will help you feel familiarized. I always suggest prior to approaching the school about an IEP to find your Parental Rights from your Department of Education- Special Education for your state as most schools will not bother to educate you on ALL your (your child’s) rights and the second rule would be to always have someone go with you if possible. The school will give you a copy of your rights, and it is up to you to read and be informed. Sometimes therapists or Dr's are willing to attend the IEP in order to help establish what is needed for the child, a friend or your spouse can accompany you as well. Ultimately this is your IEP and you’re in charge, you can bring whoever you wish to help you. And third thing to remember you do not have to sign the IEP that same day, if you’re unsure take it home, read it over and then sign and bring back to the school and make sure you get a signed by all parties’ copy of this contract.

Having a child in special Ed doesn’t have to be bad thing. Special Ed is a blessing, the earlier our children start the more improvement you might see and they can address more than just educational issues, also social and medical. For example, if your child is tracking along with their peers but still needs meds for any reason at all during school hours this can be implemented into an IEP to ensure proper procedures are followed. A child who has balance issues and tends to fall a lot because of medication or a medical cause can have an aid assigned to them, just the same as a child who needs to be re-directed in order to get their work done or to learn to respond to social situations due to ASD (Autism Spectrum Disorders) etc. Some children need untimed testing, isolated testing for concentration, or oral testing. Also once your child phases out of High School if they still have an IEP they can contact their local Vocational Rehab for services and information. These services can follow into college and depending on impairments college tuition might be covered as well as items needed for class depending on your area.

Ideally children will be taught in LRE (less restrictive environment ) which means some children who are able to be in regular classroom but need to address certain issues can be in with their peers and go to the Special Ed classroom just certain days a week for an allotted time. Special education can address reading, math, writing, and social problems if needed. Your child is entitled to this help by their School District starting at age 3; if they do not have a full time SLP or OT/PT this can be requested.

My daughter who has Classic TS, PDD-NOS and AD (Anxiety Disorders) and HBP (high blood pressure) had really bad social anxiety and didn’t know how to handle herself away from us, so we came up with a plan in order to prepare for school the following year. Starting at age 3 her dad would get on the bus with her and go to school for speech and a short integration into pre-k ( to get her used to the classroom environment) in which he would have to be in the room with her, an aid would also be on the bus sitting across from her and accompany them to speech and class, slowly my husband was to move across and she would sit with her aid, they would walk to class until she was comfortable enough for my husband to fade into the background and she would go with her aid, but the last semester she would get on the bus alone and sit with her aid and they would bring her after therapies were over.

This is just one example of what needed to happen for our daughter to be able to go to school and how the school helped. It wasn’t always easy but knowing my rights I was able to address and remind the school of what had to be available to us according to the law. Remember the IEP is a contract with a team of helpers ultimate goal is to work for your child and help them progress in school in ALL areas.   She no longer needs Special Ed after 2.5yrs working with them, and she will continue to be evaluated yearly to be sure she does not need help or as I ask them to evaluate. If you ever have issues do not hesitate to contact your State Dept of Special ED they are more than happy to provide information and address problems within the school if needed.

Here are examples of IEP’s to help guide you through the process:

I hope this helps some of you on your journey. Thanks so much to Sarah for allowing me to contribute to Turner Syndrome Awareness Month.

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