The Extraordinary Burden of IEPs on Moms.

“Is it getting worse?”

I sighed. Then nodded. “It is.”

I was at lunch with a local administrator. We were brainstorming some ideas to make the overall climate of special education must less tense. Improve relations. Try to work together.

I wonder if we can. Here we are, 40+ years past IDEA 1975. And I believe it is worse today than it was then.

Imagine this, parents. Imagine you are envisioning your child’s future, and the different pieces of his/her future are trading cards. And you say, “Ok, I will give you this card for safety, and in exchange, I get to keep all the cards for food.”

And imagine you had to play this game with your school: “I want to have all our cards for reading so that he can read, but to make that happen, the school can have all my history cards. We just won’t focus on history. Reading is more important than history, I suppose.”

Sounds crazy, doesn’t it? Well, that is what special needs moms do every day. Our society and our schools have the resources to provide things our kids need  (and are entitled to, per federal law) yet we are denied access each and every day.

Welcome to the world of IEPs.

I run a chat forum that goes with this blog, where parents can ask questions and offer support to each other. The group is made up mostly of moms (96%). I’m not judging.

Parenting still falls on mostly moms, so why should this segment of parenting be any different, right? We may drag the dads to IEP meetings, but by and large, this is ours. And it’s taking it’s toll.

The Extraordinary Burden of IEPs on Moms.

Moms with special needs kids have been found to suffer the same stress levels as combat soldiers, and it takes a toll on us with memory decline and other health issues. Dads do not experience these same detriments.

(side note: I am NOT saying that dads do not ever participate in the process or experience sadness and stress. Of course, they do. But NOT at the same levels as moms. The aforementioned studies I just linked state this.)

IEPs: It’s all a negotiation.

I have a friend who is currently in litigation with her school district. The sticking point is transportation. See, since our kids have additional needs, you can’t cram them in lots of 50 on a bus.

They usually require a van with fewer students and often an aide and a nurse. So now you are talking about the bus, the driver, and the aide; transportation is expensive.

And her district doesn’t want to provide transportation to a different school. First of all, imagine having to hire an attorney to get your child the education he needs. Why is this even OK?

And yet I find myself and others saying, “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 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, to get the ones we need more.

Bargaining away what our kids need in their IEP.

What other parts of our lives do we do this bargaining? Where else in life are we willing to give out something our children need, 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, 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. Furthermore, they may even regress.

Some comments made by moms in the IEP chat group:

• I’m exhausted, and tired of being in fight mode every day. I am thoroughly convinced that my daughter is not getting an appropriate education. To boot her last quarterly report shows that she did not achieve 1/3 of her goals. I plan to home-school her within the next few 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 does daily. She is not receiving the services listed in her IEP. I do not think this school really wants her and they are doing everything in their power to make us walk away and choose another placement.
•  I am tired year after year of the boys not progressing and hearing the same thing over and over again,
• My son is in the 11th grade, and 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 and they try to say he is not doing the work, he has broken 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.

It often feels like no one cares besides other special needs moms. Change cannot happen while we constantly drain education funding. The children and families who rely on public schools the most are usually the families ostracized. How much longer are we going to take it?

IEPs: The knowledge base I wish I didn’t have to have.

Here are some other statements and questions from the group:

• Can anyone in PA enlighten me on the consequences of receiving a PA Standards-Based (“regular”) Diploma vs an IEP Goal-Based one?
• Fair and equitable grading question. My 2E son is receiving A/100% based on ‘effort’ (he has done the work, not necessarily correct) not learning outcomes (correctness). To me, this is not an equitable grading system. Is my thinking correct?
• I had part 2 of my daughter’s annual iep meeting this week. My daughter is in 5th grade, with a reading fluency goal for the end of the 3rd-grade level with a benchmark of 47 WCPM and a goal of 67 WCPM……
• We met shortly after and they basically asked point blank– what do you want us to do with him?? It was a horrible meeting with the school saying basically until he fails he will stay on a 504 and not an IEP.( he has ADHD/ DCD/Dyspraxia and severe anxiety )
• What would you do if…..you learned your child was called lazy by her teacher in front of the entire class? Sadly, it gets worse as per her IEP she is to use dictation software for her ELA rough drafts and this teacher is making her handwrite them.

Imagine constantly being on the learning curve. Yes, parenting is hard and none of us knows what we are doing all day, every day. But imagine having to learn new things about your child all the time (in addition to all the regular parenting stuff). Medications, diagnoses, therapies, evaluation scores, different curricula, and pedagogy.

And I haven’t even gotten to the lack of a summer break for special needs moms. Between ESY and everything else, the conversation about special ed and the preparation for the next year never slows down. I keep thinking that the group activity will slow down, but it never does.

We’re constantly in drive or heaven forbid…park or reverse, never on neutral or cruise control. We’re constantly going and planning, never taking a break for a tune-up.

It’s no wonder we are exhausted and show symptoms of PTSD. Keep in mind that IEPs are just one part of special needs parenting. We have doctors, specialists, repeated surgeries, heck…some parents are just trying to keep their kids alive. And still, we have to decide which of our child’s needs we are going to focus on this year….what a tragic state of affairs.

I’m starting to ramble now, and some might be asking, “What is your point?”

My point is the same as always:

• that we need to make proper education funding more of a priority for all kids.
• Moms, know that you are not alone.
• Take that much-needed break.
• Find your support net
• and contact your legislators to help facilitate change and keep on going.

You’re awesome and I’m proud to be a part of this. I’ve never met a greater group of women.

Edited to add: I want it to be known (since I received emails) that I am not implying or stating that schools are trying to get away with something. I love teachers, I love schools, and I know that most IEP teams are doing the best they can with what they have.

I can’t even imagine what a blow it is to your morale for special ed professionals. You get your degrees and go into student debt so that you can help disabled kids. Only to find a job and not be given the resources to do so, when you know that as a society, we have the resources.

The whole system is broken at the federal and state levels. This is why I am always asking parents to contact their legislators to create change. Not enough of us are doing so. And if not us, who will?

As Senator Gillibrand pointed out, we have to do this if we want change.

I am glad that so many of you find validation and camaraderie in this post. If you are having trouble with your child’s IEP, know that every state has a Protection and Advocacy group for people with disabilities. It can be a starting point if you don’t know where else to turn.

This post was originally published in 2015. It is updated periodically to check links.