Not talkin' about the IEP

The IEP is a team effort, not a group chosen by parents, but by the educators and school districts themselves. There are times when outside consultants are used, but those are generally provided by the district if it is at their behest. Many times parents will have their own people come in, e.g. lawyers, psychologists, and consultants. We have not had this experience, but we do know of some people that will not go into an IEP without an attorney present. It is amazing to us, but you have to consider other peoples experiences and their comfort zones.  Generally we see the IEP as a team experience we don't have to like how it is going, but for the length of time our son is there we have to be able to work with these people if we like them or not. The one thing we have to remember is that it really is nothing personal although there are times when it feels that way. We have learned to apologize when we are wrong, but rarely have we been apologized to.

Largely, it has been our experience that there are things one never discusses with other people in our social circle; sex, drugs, politics, religion, and IEP results. In our friend circle, we do not talk IEP's. Any other topic is free game; but there are good reasons to not discuss the IEP with anyone out side of your partner, husband or someone not involved in the local districts IEP process.

IEP's are one of those touchy items that people can, and do, get upset about. One classic example is the thinking, "IF so-and-so's kid has it why can't mine?" My bet is that maybe because the other family does not want an aide around? On the other hand, possibly, there is another reason for the family to be able to have what you do not; it could be as simple as social ability or whom you are working with as a doctor. Another reason could be accessibility- you need to allow the school to do their job- teach your kid.

The cuter half once said that you don't get to have aides in life (although a social secretary and personal organizer might be nice) so why do you have to have an aide through school? Many families insist upon having the additional assistance for their kids, without realizing that being in a place where they need an aide means that they are somewhere beyond what they can handle. We have discovered that having our son in a more restrictive environment at a younger age has made him much more successful in school as he has gotten older. This attitude has made a huge difference IEP wise.

Honestly, you do not want to know what is on someone else's IEP report; we compare it to reading a diary. If other families are getting services and you are, wondering why you are not…it just makes for hurt feelings. There is not a blanket list of services of what a school will give you for your kid. It all depends upon what is going on and where your kid is at the given time. No school is required to give you the same things for each kid. Since each child is different, each IEP program is developed differently, and spontaneously. There is no cookie cutter method to developing and implementing IEP's. Ergo, that is why they are called "individual".

Frankly, a family taught us a few things about IEP's and why we have the "won't discuss IEP's" policy. Sadly, this family pretended to be friends with our family, and then went and asked for what our son had and used his name during their IEP meeting. Essentially, we were used intentionally, and after that experience, we were told by our son's school NOT to discuss what our son was getting as far as the services offered with this family. We were shocked that our son's name was even mentioned by them. Later we learned that this is something this family does regularly to everyone and that we were not the only families being used by them.

Over the years we have dealt with a lot of, for lack of a better term, garbage. Some of it is pretty unkind, we are generally ignored at parties, at church and not spoken to by neighbors on the street ("They are the parents of THAT kid") and sometimes not treated very well by some of our family members. On family issue parts, I think that there were other issues in the way. To the cuter half and I, we are so focused on the boy and his needs that this family stuff appeared so superficial and we just ignored it and acted like the problems were not even worth mentioning. The family thoughts and comments really meant nothing to us at the time. I am pretty certain that our feelings were never considered (or that we had feelings) and we were seen as self-absorbed mongrels.

Actually, the garbage goes with the territory; generally, what people don't realize is that if they don't understand Aspergers or Autism and talk about it anyway the parents of the child in question will just mentally cut you off because they have enough to deal with and don't need the added stress. If you don't know anything about the topic you are discussing it is better to 1) not talk, or 2) read up and then ask questions.  Talking is all part of the scheduling and we would have to talk ourselves to distraction to do what the boy needed us to do. For us, you could think of it this way; at one point we had a schedule like this, Monday -Physical Therapy, Tuesday- Speech Therapy, Wednesday- Occupational Therapy, Thursday- Psych., Friday -off (unless another Dr. appointment came up.) Saturday- Speech and Physical Therapy…do you see where I am going here? This schedule sucks. We had no nights off and the nights off we did have, Abe and I were in bed by 7 PM. Too pooped to pop.