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Surviving the IEP Process

By Dad:
Your child has been diagnosed as Autistic or Aspergerís and now the schools are wanting to meet to establish the IEP for the coming year. It can be a very stressful time as you, the parents come to grip with the full nature of your childís condition, deal with those around you in society, and quibble with the doctors, psychologists and other professionals who are going to "help" your child. I am not qualified to advise you on what programs to expect and accept, and there is much grey area in this regard among peoplesí opinions, even those "experts" who have many years experience.

What I am going to attempt to do however, is set down some ideas on the IEP process itself. What you seek for remediation therapy is something you will have to decide. Every child is a little different, and though there are many commonalities, what works well for one will not work for another. Remember that Autism and Aspergerís are considered to be on a Spectrum, and as they frequently have co-morbid conditions as well (such as MR, OCD, ODD, SID, etc.) your child may need a slightly different mix than another child, even if both children are yours.

Because of this there are no simple, clear cut programs to follow. ABA has been demonstrated to be extremely effective with many autistic children, but is probably too much for those at the upper end of the Spectrum, and those at the lower end who have profound MR will probably not respond to this either. TEACCH has also been used successfully with autistic children, and probably is more appropriate for those who are lower functioning than most. Then there are also complementary therapies such as Speech, OT and PT. And there are things like child-led instruction, "playBA", and social stories. All this could be argued for the next 20 years without ever coming to consensus, and meanwhile your child is not getting any help. Remember time is the enemy here; each year that your child goes without positive remediation will make the job that much harder to achieve.

What I hope to help you with is strategy for successfully negotiating the process of developing and implementing a successful IEP. There are certain tricks that you can use to increase the odds of being successful in getting what you feel will benefit your child. Remember that the schools are not in the business of offering your child services to maximize their potential; that is your job as a parent. The schools are in the business of offering minimally adequate services to as many children as possible using extremely limited funds. The Feds have mandated many things for the schools to do, but have not sent the funding to cover the expense. The schools are prohibited by law and by court order from charging the families for the very expensive services; the courts have also decided that the schools cannot use lack of funding as a reason to deny services. While this is certainly not fair in the least, it is also not your problem to contend with. Your problem is to maximize what you can get from the schools, and let them worry about footing the bill.

Many will say "but we are supposed to be a team in this." Nothing is farther from the truth. Unless you are in one of the few Districts that actually does a good job working with autistic kids, you can count on them short changing your child out of services so they can spend the money on other programs, such as administrative overhead, football equipment, new furnishings for the district offices, etc. Bartering for services with the schools is not so very different from baby birds wanting fed. Those who chirp the loudest get the big worms. You are not there to be a team player, you are there to get your child the program and services which will do him/her the most good. Never lose sight of that fact.

As the parent of the special needs child, YOU are in control of this meeting. It must be held at YOUR convenience, not theirs. Nothing can be initiated in the way of services until YOU sign the document. Anything YOU do not agree with will not be implemented. If you are not satisfied with the way the meeting is progressing, YOU can make them start all over. Often, districts will attempt to streamline the process by using a previous IEP from another student as a model, having everything already written down, and then quickly skimming it in the meeting and shoving it across for you to rubber stamp sign. This is entirely illegal, and you do NOT have to accept any IEP that is not developed specifically for your child. While there is nothing wrong with using a model IEP per se, YOU will need to ensure that what they have worked up ahead of time is indeed appropriate for your child.

First and foremost, before you even think about stepping foot inside an IEP meeting, you must arm yourself with knowledge. To be successful in this, you will need to be well enough versed in the law that you can counter when they suggest things that are contradictory to Section 504 of the ADA and IDEA. For this you will need to speak to a trained and experienced advocate. Each state has fully trained parent-advocates available to help you in this, and it is a must that you seek them out and talk to them to discuss what the law says the schools have to do.

You will also need to do your homework as to what therapies, services and methodologies are available which can benefit your child. There is little use in spinning your wheels and wasting the childís time by allowing the schools to use ineffective, outdated, or simply inappropriate programs with your child. Time is of the utmost importance, and study after study after study have shown that those autistic children who receive remediation very early in life are the ones who recover the fastest and to the highest degree. You will need to talk to other parents and find out what worked and what did not. You will need to talk to professionals who are experienced using the methods you are looking at, so you can see exactly what is involved and how appropriate it will be for your child. Know that for the bulk of autistic children in the middle of the Spectrum, ABA has been shown over and again to be the premier method for helping them become better connected to our world. Know also that the schools do not willingly use this method, as it requires intensive 1:1 instruction, and that equates to expensive. Various administrators will attend workshops (at tax payersí expense) on how to defeat parents requests for this method. You will need to be able to out maneuver, out argue and out wit them if you are to get what your child needs.

Also, find out what some of the other children with the same problems as your child are receiving. How many of them are integrated, and what level of functioning are they? Do they get a personal shadow or aide? How much speech or OT do they get? Do they have pullout resource time available? If they are segregated due to low functioning, are they in a program geared towards autismís specific needs or are they in a generic program for MI, with multi-handicaps and multi-ages in one room? To allow the schools to bury your child in a segregated program with a range of disabilities and a high student to teacher ratio (such as 5:1) is to guarantee that your child will get neither the attention he will need, nor the program that is appropriate.

After you have decided what you wish to ask for, be sure and jot down all the particulars, so you can bring them up in the meeting. These include, but are not limited to: ABA, several hours each week of speech and OT (PT if necessary), a shadow or personal aide, pull-out resource for integrated students for activities such as social stories, etc. Know what it is you want, and then when you are developing a plan, ask for more. If you feel that 3 hours of speech are needed, demand 6. If you think 20 hours of ABA will be helpful, demand 35. By asking for more than you really think will be needed, you allow for them to compromise closer to what you really want. This is no different from the horse-trading that occurs at swap meets and flea markets. If you start with what you want, the compromise will nearly always be much lower than what is called for. And NEVER be the one to suggest the compromise. Never be seen as willing to give ground, or they will capitalize on this. Make them suggest the compromise, and do not back off of your position until they say the magic numbers that agree with what you really are seeking, and then do so begrudgingly.

Once you have done all your homework, and you are ready to begin, there is one little trick that is so critical to your success, that to not use it is to run the risk of losing before you even get started. Once you get into the meeting, emotions are going to run hot. They will say things which will upset you. They will say things which will anger you. They will say things you do not understand in the least, and cloud the issue by using anacronyms and jargon which often time they themselves do not understand, but use regardless. If you are busy trying to take notes, you are not listening to what is being said. In order to free your hands and your mind, and still be able to keep an accurate record of what has been said, you will need to tape record every meeting you attend.

Most districts require prior written notification in order to allow you to tape. They cannot deny you the right to tape, but they also will not advertise that you may do so. By requiring a formal notification, they are playing a little game to prevent you from showing up and beginning to record them. It allows all players to know ahead of time to be on guard, and to make sure that they get adequate time to rehearse their lines. The way to defeat them is to type up a simple blanket notification, stating that it is your intent to tape record every single meeting you will attend. File one copy with the Office of the school your child will attend so it can be part of his file there. File a second copy at the district office of the special ed director. I suggest for maximum coverage that you hand deliver these, and present the secretary with and exact Xerox to be dated and signed that it was duly received, so they cannot conveniently lose it, and tell you that you cannot tape when the meeting comes around.

When you are selecting your tape recorder, be sure to get one that runs on batteries, and takes standard sized cassettes. You do not want to be dependent upon their electricity to tape, and you want to be able to listen to these tapes later on any tape player. I like to listen to them while I commute to work; it beats the hell out of listening to the same commercials over and over, or DJís laughing too hard at their own lame jokes, and gives me the chance to run over the material several times, so I can better understand what has been said. When you go to a meeting, always take several blank tapes, and of course spare batteries. Practice using the tape recorder ahead of time, so you will not miss anything fumbling with the controls. After you fill up both sides of a tape, be sure to clearly label it with the date, and type of meeting it is (IEP, ARD, meeting with the guidance counselor or sped director, etc.). Also be sure and break out the little tabs on the top edge, so that you will not accidentally erase or over-write what may turn out to be a critical piece of evidence.

When the time comes for your meeting, make sure you are relaxed. Get a good nightís sleep the night before. Do not allow yourself to become stressed before the meeting. Dress for the occasion. I suggest never wearing business clothes, or even semi-casual wear. Dress down as much as possible without being too ragged, as it will cause them to under-estimate you. I like to wear faded jeans, a tie-dyed t shirt and my big, black motorcycle boots. A worn denim jacket completes the ensemble.

During the meeting it is a good idea to have a notebook and pen handy, to jot down questions that you may have. Be sure and ask the questions at the appropriate time so that you can be sure of what is being said. For me, the appropriate time is to ask it immediately after the thing I need clarified is said. This will serve two purposes: it will allow you to get as much information as possible while you are on the topic, and it will serve to break their patter, so that they will find it hard to get back into step should they be working from a script and not actually well versed in their subject matter.

Sometimes, they will say things which sound very reasonable, but in actuality they are talking out of their asses. Very few teachers, administrators or other staff have in depth knowledge of autism. So they will throw out a few buzz words and catchy phrases that look good on paper, but in reality mean nothing. What I like to do when I suspect that someone is doing this is to present them with a question that also sounds very good but is fact nonsense. For example, I may ask them to contrast the work Lovaas did with autistic children coupling ABA with music and aromatherapy with the work that Rimland has done with his diet regiment and floortime. If they actually know what they are talking about, and call your bluff, just play dumb, and say something like "oh thatís right, Lovaas didnít use aromatherapy. I get all this stuff mixed up". You will have gained two advantages: you will know that they actually have read up on autism and you can play hard ball with them, and you will have caused them to underestimate you by appearing to not really know what you are talking about. But if they agree with you, or begin to expand upon your bluff, you will have them on tape talking about something which does not exist, and that can come in very useful later should you have to go to Due Process.

While the meeting is rolling, if things are going your way (meaning they are clearly not knowledgeable, or are saying stupid things that will haunt them later, like we donít have the money for anything, or we donít do that here when the law says they have to) do not draw attention to the tape recorder. Let them put both their feet in their mouths. But if things are not going your way and they are hitting you hard and fast with their denials for your services and their redirects to their own substandard offering, use the tape recorder to distract them. Turn it to face the speaker. When one tape runs out, make a small show of breaking out the tabs, and labeling it. If you can distract them just a little, you will break their concentration, and that will work in your favor, not theirs.

One final note, and this is very important. One of the tricks that the schools will use to get you off your game is psychological warfare. They will attempt to get you off your game by getting your emotions up, by trying to push your buttons. They will say things which will upset you. You must be very strong, and never let them see you cry. I know this can be very difficult, because we all want to protect our children, and we all have higher expectations than the schools do. This is only natural, as we are with our children day in and day out and know much better the untapped potential in them. The schools conversely are nearly always very lackluster in their assistance to our childrenís development, and when you do not make the 110% effort to remediate of course these children will repeatedly fail to develop. It does not matter to the schools that they only half-ass try to help our children; their experience has taught them that these children are hopeless, and so they will only have that to go by when evaluating your child. So they will say things that in a roundabout way mean given your child extra services or 1:1 attention is a waste of their time. You must be able to disassociate yourself from their hurtful words. If they see you cry, they will have gained a tremendous advantage over you, and while you are busy trying to make sense of what they have said, they will slide their program in place, and you will have to fight 10 times as hard in the future to change what has been written.

It is my hope that by sharing a few strategy ideas, some of you readers will be able to come out of the IEP process a winner, in the fact that you are getting appropriate services for your children. Do not allow what are in essence playground bullies running the roost to browbeat you into giving up an inch of ground. There is far more inside of each of our children than they will allow. 90% of autistic children are NOT mentally retarded, they are cognitively impeded and communicationally delayed, a big difference. With proper therapies and educational methods many can develop to live lives needing minimal support. To allow the schools to choose their routine path of cheapest offering is to guarantee that you will either have to go it alone on your time, or else start shopping for a residential facility right now. Remember this simple truth Ė NO ONE is EVER going to care as much about your child as YOU, the parents will.

Never give up on your child!

[my thanks to Dad for allowing me to use this writing on my site]

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