The extraordinary burden of IEPs on moms

And yet I find myself and others saying things like “Well, what can you give up in exchange for the transportation?”  I even said this phrase, “It’s all a negotiation. And we all know it’s about money and transportation costs money.”  I hate myself for being so practical and callous and jaded about this, yet I know so many in the field who are the same way.

Another mom chimed in, “I know it’s horrible to say that; our children are entitled to their services. I have personally taken one day less of p/t for my son in exchange for a nurse on the bus.“

So imagine that. She wanted her son to be safe on the bus and he requires a nurse. But in order to get the nurse on the bus, she had to give up some physical therapy. Is this crazy or what? She has to use the various parts of his education like trading cards. And for every IEP meeting, we review our cards first. We see what we have, what cards we really need and which ones we are willing to give away, in order to get the ones we need more.

What other parts of our lives do we do this bargaining…willing to give out something our children need, in order to get them something they need more? I can’t think of any. Why can’t we provide everything our kids need? Our country certainly has the wealth and resources to provide this, why aren’t we? Supposedly we are guaranteed this by federal law, why is it so hard to secure?

If our children need something, and we have it available, why are we constantly denied access?

Progress is something that parents of typical kids take for granted. While not every kid is an honor roll student, most parents can reasonably assume that when their kids go to school each day, that they will be taught the curriculum and that they will reasonably progress through the grade levels. Not us.

We cannot be sure that our kids will make progress. Further more, they may even regress.

Some comments made by moms in the group:

• I’m exhausted, tired of being in fight mode everyday. I’m am fully convinced that my daughter is not getting an appropriate education. Too boot her last quarterly report shows that she did not achieve 1/3 of her goals. I plan to homeschool her within the next years. Do I bother pointing out the obvious to the school district??
• I do not believe the team is telling us the truth about what my daughter is doing everyday. I do not believe she is receiving the services as listed in her IEP. I do not believe this school really wants her and they are doing everything in their power to make us walk away and choose another placement.
•  am tired year after year the boys not progressing and hearing the same thing over and over again,
• My son is in the 11th grade, the high school he attends, has not followed his IEP, he has very few credits to graduate. I have meeting after meeting, I talk to his teachers an they try to say he is not doing the work, he has broke down while crying and said he just does not get it.
• His present levels in his June 2015 IEP are below those in his June 2014 IEP. We tried to work with the SD all year, and all summer, but they haven’t fixed the problem going forward and do not seem interested ….

Imagine your child regressing. You send them through the 6th grade, and when they finish the school year, they are below a fifth grade level. It’s something we deal with all the time. Why does it feel like no one cares besides other special needs moms? Why are we not properly funding our schools? Why is it accepted that we ostracize families and children, the very families in the community who rely on schools the most?

Here are some other questions posed by moms in the group:

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