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October 22, 2007

ABCs and IEPs

IEP Alert LevelsI have an IEP meeting about my son this week.

Last year at this same time, I was very nervous. But this year, I am not concerned at all. I am comfortable. I know what to expect. And I am now in a "dream district" where my expectations thus far have been met, and then some.

So you think your child may be a bit quirky? Ready to get out your warrior gear? I wasn’t.

I thought the whole notion of “battling for my child” was overblown. When other "special needs" parents gave me "the look," saying, "Come out, Mama Bear!" I thought they were exaggerating. Certainly people would care about me and my precious, right? Especially since his needs are so minor in comparison to my stereotype of “disabled kids?”

Wrong.

Instead, the evaluations from the MDs, SLPs, and OTs give you the XYZs, and you say, “Mercy, please!” But what you really need to know about are IEPs.

When my son was first diagnosed with PDD-nos, I understood those initials (pervasive developmental disorder, not otherwise specified,) but when an acquaintance breezily announced, “Oh, I just got back from my son’s IEP” I had no idea what she meant.

Last year, my son received his own “Individualized Education Plan” from our then-school district. We have since moved to a new school district, but it is in the same “SELPA” (there we go with acronyms again!) so his IEP goals, objectives, and other details remain.

How to make sense of the alphabet soup of special needs?

“SELPA” simply means “Special Education Local Area Plan.” For example, the San Mateo SELPA includes 23 school districts. If a child in one district moves to another, the services provided at the first must be provided at the second: the IEP does not change. In the case where a move occurs between SELPAs, then new testing and a new IEP are created.

An “IEP” the “individualized education plan,” is a document that outlines what it sounds like: a plan for your child’s education. This includes goals and objectives for your child’s progress, and how these goals will be met. This document includes things like transportation to the proper school, how many hours of occupational and/or speech therapy the child will receive per week (or per year) and whether the child has an aide. Some IEPs include specific accommodations or devices ("wiggle seats," for example, or the ability to go outside and run for 5 minutes between activities.) Many include specific instructions to the teacher (ie, "Inform student 5 minutes before switching subjects.")The plan is, as the name indicates, individualized.

Unfortunately, this “individual” nature means that it can be complex. Knowing what to ask for, how to get it, and wheat your child really needs is very tricky. Some districts will not be completely forthright in their descriptions of the child’s needs or their ability to provide the appropriate services.

It seems like pretty dry information, but it is crucial if you happen to have a quirky kid.

For example, my son was qualified for special education under “institutional observation” in speech rather than the “autistic-like disorders” qualification that more accurately describes him. Our old district did that because they could provide speech therapy to meet the needs of the speech qualification, but could not provide social skills training if they had qualified him under the more accurate label. So, to stay in “compliance,” they fudged his label.

If I had understood the process better, I could have called them on it. It wasn’t until we moved to our “dream district,” that I saw what we were missing. (More accurately, the Director of Special Education in our new district pointed out the loophole.)

It is tough for the parents of a newly-diagnosed child to evaluate and understand all the different services, therapies, and most importantly – their rights. Typically, parents of special-needs kids are already overburdened with the accusatory stares of others, reprimanding lectures from their kids’ teachers, and exhaustion in the home.  (How to get a babysitter to get much-needed time to go out with your spouse when your child cannot be trusted to behave for a typical teenager-down-the-street?)

On top of these existing challenges, parents also need to wade through stacks of information to figure out what applies to them and their unique situation.

Frankly, I dislike parenting books and haven’t really read extensive information on various therapies for autistic spectrum disorders. My information has come in little chunks as I read others’ stories via blogs or hear personal anecdotes. Medical professionals have proved to be no help.

But first and foremost, it is important for parents to recognize that through CA Law they have rights to a free and appropriate education for their child ("FAPE".) Frequently, school districts will avoid offering assistance if they are under-funded, but they still have the responsibility to meet the needs of each child.  I have found WrightsLaw to be a valuable source. There is more information there than I have read, but the topics I’ve browsed have been very helpful.

Amongst the things I’ve learned is that a child’s placement cannot be made without parent (or guardian) approval. The parents are a vital member of the IEP team. As such, meetings must be available to the parents, and decisions must include the parents’ input. Many parents don’t realize this legal right: they feel bullied by the school and are told their child’s placement without consultation. I’ve heard plenty of stories of parents who say their child is no longer welcome in a particular school. But they cannot ask a child to leave a [public] school. It may be that a different placement is better, but those accommodations must be made with the parents’ input and approval.

Schools, medical professionals, and regional centers typically won’t volunteer information. It is up to the parents to seek it out. Keep this in mind when someone shrugs their shoulders and pretends as though your child is a novel case with no known solution!

If you suspect a delay, contact your school system immediately. They must respond within 15 calendar days. Then make sure you question any of those pesky acronyms, and don't simply take what they say as being fact. Don't assume malice, but also don't trust them 100%. The alphabet soup of Special Education is more of a muddy bog than a nourishing clear broth, but being informed and staying strong will help transform the process into a help rather than a hindrance!

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