Getting Ready for the IEP Process: Some Thoughts and a List

One statement about the IEP process is that everyone seems to accept at face value is that the process is hard on parents.  No ands, ifs, or buts, the IEP process is stressful and often quite emotional for a family trying to make sure that they are doing what they should and that the district is providing appropriate services to the child.  In evaluating issues that have come up with different parents and districts over the years, and from personal experience, here is a short list of some things that parents can do to prepare for the IEP and to help make the process work more smoothly.  While there will still be bumps in the road, I find that doing these things does help.  They do take an investment of time and effort, but your child is well worth the effort.

Remember, these are things you should do to prepare for the process.  I will talk about the IEP itself and what parents need to understand about the meeting in the future.

First, we need to start with 3 basic premises: 

First, you as the parent understand that you have a responsibility in the IEP process to educate yourself about your child’s disability, what it means, what services are out there, and understand that to make the IEP process work successfully for your child, you have to invest some time and effort.

Second, understand that the school and school staff are not your enemy.  The vast, vast majority of ESE staff and teachers want nothing more than to see every child to succeed and often will bend over backwards to try and help them.  Obviously, there are exceptions, but remember, teachers did not go into teaching to get rich.  (If they did, they certainly chose the wrong profession.) They went into teaching because they love working with kids.

Third, you will do all you can to keep the lines of communication open, even if you get frustrated.  Remember the old adage that you can get more flies with honey than with vinegar?  It is true.  If you treat people like a partner, they will usually treat you the same way.  If you treat them like an enemy, don’t be surprised if the individual barricades get thrown up.  (School staff – remember, the same applies to you, too!)

Now, the list: 

·        Honestly examine your child’s strengths and weaknesses

·        Determine a vision for your child (the vision can change over time, but it gives you a reference point)

·        Identify the educational needs to reach that vision

·        Write a needs statement and an alternative list or action plan on how to get there

·        Develop a partnership with your school.  The truth is, in the vast majority of the situations I see, the district wants your child to be as successful as possible, even though you might not always agree on how to get there.

·        Develop an understanding of what programs are offered in your local school district. 

o   If you don’t know or understand something, then ASK QUESTIONS!

o   Remember,  if you are going to be an equal partner in the IEP team, you need  to learn

·        Provide the IEP team / eligibility team with copies of information the school may not have.

o   Medical records

o   Past school records, tests, and any outside evaluations

o   Remember, the school needs to see documentation to consider them.

o   Try to provide them far enough in advance so that the team can have a chance to consider their meaning in the big picture of the child before you walk into the IEP meeting.  (As a parent, I don’t want to be blindsided by new info, and neither do the school folks.)

·        Find out how you and the school can collaborate to support the agreed upon program at home

o   Reinforcement is often critical for kids with disabilities. If everyone isn’t on the same page, often it will create confusion for the child, and slow down gains.

·        Keep notes and records – remember, if it isn’t written down, it did not happen.

·        Organize yourself.  Have a record keeping system.  Treat paperwork like you do your financial or medical records.  That way, when you need to access something, you will be able to.  Don’t wait to do this – it is far easier to organize from the start than from 6 months or a year into the process.

Anyway, this isn’t a complete list, but it should give you something to think about.  As the time moves on, I’ll talk more about different aspects of the IEP process.  But first, get yourself prepared.  Good luck, and get started!

Today Was One of THOSE Days

Today has been one of those days.  We got to spend Sunday morning at the local urgent care facility.  Obviously this was not a planned stop, but not one that was unexpected, either.  First, let me be clear – there was no risk to life or limb.  Everyone is basically fine.  The trip resulted from the Vesuvius-like eruption of a cyst that had developed on our son’s smallish posterior.  Ian is thin.  Skinny is a better description. This is partly due to genetics (not my side) and to his cerebral palsy.  He carries about 2% body fat, though he eats like a bear just out of hibernation.  Sometimes I count our china to make sure that he didn’t accidently wolf one of them down in his feeding frenzies. 

So, how does all this link up?  Bottom line, he has very little fat on his backside, which sometimes results on a little too much pressure when he sits.  The result sometimes is the development of a cyst.  Sometimes they go away by themselves.  Twice now, they have not.  This was the second one.  In those cases, the doc numbs the area, pulls out the scalpel, and incises them.  It isn’t pretty.  Then for the next several weeks, I wind up packing it with special strips to allow it to first drain and then heal from the inside out.

Now for the really important question – Why, Mark, are you grossing all of us out with this story?

The reason is that it got me thinking.  I spent a good deal of time thinking back on past medical procedures and other related things.  In doing so, several things kept popping into my head.  First, over 19 years, we’ve seen the doctor way too many times.  I’m sure there are others of you out there that are nodding your head in agreement on that.

The second thing that popped into my head was just how these kind of medical distractions impact Ian and other kids I see with disabilities.  In many cases, the impact is somewhat more pronounced than it is for a person without disabilities.  Just the additional stressors on the body from insult or injury have to take a toll.  I will probably need to make arrangements to get Ian to and from his classes at community college this week.  Normally he drives without any problem.  But just the added distraction of sitting on the incision is enough to be a real problem for him.  Something like this event would bother me, but it really does impact Ian and his ability to function.  I think sometimes that these things act as that additional monkey wrench in the machinery, just bringing long practiced processes to a halt.   I’m guessing other parents reading this understand exactly what I’m talking about when I talk about these kinds of additional impacts on the child with a disability.

That then led me to the third thing that popped into my mind.  That was how even when there are these medical issues that show up and impact the lives of these kids, how these kids just keep getting right back up and moving on.  I have seen so many kids with disabilities, when something goes wrong, just keep plugging away and moving forward.  Whether it is something like this cyst, or a broken arm, or some kind of surgery, it really doesn’t matter.  The attitude I often see is one of ‘ok, can’t do anything about it, so how do I get around it and get where I want to go?’  They may be down for a while, but usually they just want to get through it and get moving again.

I always think back to when Ian was about 6, and was learning to walk independently.  He was still using a posterior walker to get around.  Anyway, he fell off a bench and needed stitches in his forehead.  He was not happy about it.  When finished in the E.R., he took off in his walker, headed for the door at full gallop.  At the first turn, he promptly rolled the walker.  I took one look.  Mom went and scooped him up, and I looked at the doctor and nurse and said, “please don’t go anywhere with the stitch kit.”  They looked at me and said, “WHY?”  And I told them, “Ian just rolled his walker, and my guess is that he just busted every stitch you just put in.” 

I was right.  This time, Ian got two additional internal stitches to make sure everything held together, as well as replacement ones for those that were busted.  Ian was MAD.  Not about getting stitches, but about the fact that he had places to go and things to do, and all this stuff was just interfering with getting on with his business.    It was, in the great big picture, a little thing.  But I see this kind of attitude with so many kids.  They have the drive and the desire to go and do.  They don’t want to let anything hold them back.  Right now, I’m being told that things in the backside area feel better.  The incision hurts a bit, but no pressure from the cyst.  Ian’s concern is if he can drive this week and what about going to exercise.  This is just something else that he needs to deal with so he can keep moving on.