What’s an IEP?

Posted by Karen - June 14th, 2015

When you become a parent of a child with special needs, there’s a whole lot of terminology and jargon which you have to learn… Yes, a lot of it is “disease-specific”, but a lot of it is also common to every child with a health or developmental concern. Take, for example, the IEP.

If you aren’t a special needs parent, a teacher or an educational assistant, chances you are you will have never heard of this acronym. IEP stands for “individualized education plan”, and it’s what the school system designs for your child who needs some adaptations to attend and/or learn at school. (I understand that in the USA, there is a distinction between an IEP and a 504 Plan, which fit different kids in different circumstances, but where we live in British Columbia, Canada, they just lump it all together under the heading of IEP.)

If your kid has an IEP, this typically means that a “team” of various people, who may include parents, teachers, physiotherapists, the principal, occupational therapists and others, formulates a plan for how your child will attend school, what services he or she may receive, and with which adaptations.

My daughter Miranda is in grade 4 this year, and as we knew about her fibrodysplasia ossificans progressiva (FOP) well before she started school, we’re now 5 year veterans of the IEP. The team typically meats 3 or 4 times per year to review the IEP and make sure it’s still on track. As it happens, we just had Miranda’s last IEP meeting of the year this week.

I’ve heard from many parents that they find the IEP process very stressful and difficult. Stories abound about how plenty of students need a lot more help than school boards seem able to give, what with funding shortages – I’ve noticed that this is especially so in situations of, say, learning difficulties, behavioural challenges and high-functioning autism. So, of course if the child can’t get everything the parent feels is necessary to at least cope effectively (if not thrive) in the school system, this obviously causes a lot of worry and frustration for parents. But, I have to say that this has not been the situation for us. At. All.

Rather than have to fight tooth and nail for everything my child gets, I find that I simply don’t have that experience with the FOP IEP. Instead, it’s been kind of the opposite – since Miranda started her primary education, I’ve found that the school system pretty much bends over backwards to get her the help she needs. I suspect that this is probably because of the very obvious, black and white nature of Miranda’s FOP… It is an undeniable, clear and unarguable fact that Miranda has distinct physical limitations which require adaptations at school. It’s simply not possible to take the position that she can do things which she demonstrably cannot (which I understand is often the argument with learning difficulties, autism, etc).

Here is the special desk the school got for Miranda, which can be adapted in terms of height and degree of slant…


When Miranda started school, I was prepared to have to advocate for her to get the full time help of an educational assistant, because she needed someone to keep her as safe as possible in the chaos of a kindergarten environment. I thought I might get some pushback about this, but NOPE! The school assigned a full-time EA to Miranda lickety-split, no argument required. There was also a specialist school-system physiotherapist assigned to carefully assess the gym to see how Miranda’s physical education program could be tailored for her needs, and an occupational therapist assigned to see how to best adapt the classroom to keep it safe and accessible. They even replaced the faucet in the kindergarten room bathroom sink to make it motion-sensitive and easier for Miranda to use! Honestly, it all went above and beyond what I had expected. OK, they did scale back Miranda’s EA allotment to part-time when she started grade 2, but that was completely reasonable, since my girl didn’t need any help with actual educational work as opposed to for safety reasons and accessibility, and she was more mature and careful by that point.

This year, we’ve been talking in IEP meetings about getting special tools to help Miranda with written output, because the requirement for more extensive writing is going to ramp up in the next few years. Apparently the school’s specialized learning teacher has made an appointment for Miranda to be assessed by the agency which provides specialized technology for students who need more help. I understand this means that some bit of nifty equipment may be assigned for her use (possibly a laptop, iPad or some other gadget).

Yep, the IEP situation has been pretty painless for us so far. May it remain so…

Miranda in her school choir T-shirt - making the most of her school experience.

Miranda in her school gym – making the most of her school experience.

PS – A few bits and pieces…

1. Please donate to our FOP fundraiser. This summer, our family will join forces with another FOP family and do a Walk for FOP in Calgary, Alberta on August 2, 2015. Monies raised will benefit the Canadian FOP Network, a charity which financially supports FOP research. The CFOPN is a lean, low-overhead organization which is able to provide almost all funds raised directly to scientists working on treatments for FOP, which we so desperately need. If you’d like to help, you can donate at www.walkforfop.com, or else send me a cheque made out to Canadian FOP Network (this may be better for larger donations, so as to save credit card processing fees).

2. If you have FOP, are age 15 or over and have a new flare-up on an arm, leg, hip or shoulder, you may qualify to take part in Clementia Pharmaceuticals’ phase 2 test of the potential FOP drug Palovarotene. It requires some short-term travel to one of three test sites in Philadelphia or San Francisco, USA or else Paris France, but Clementia covers your travel costs, even if you have special requirements. For more information, go to: http://www.ifopa.org/news-and-events/latest-news1/497-interested-in-participating-in-the-clementia-phase-2-clinical-trial.html

3. Clementia has also started enrolment in a “natural history study” of people with FOP age 2 to 65. Information learned from this study will help researchers assess the effectiveness of potential FOP treatments. For information on how to enrol, go to: http://www.ifopa.org/drug-development/clementia-fop-natural-history-study.html


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