IDEA Changes
Notes from Broadcast March 18, 1999



Stated Goals:
"Successful school experience that leads to regular diploma."
"Raise standards of education and improve academic achievement."
"Even the playing field so that all students have opportunity to learn all that is offered."

My observation:

There is a great deal of emphasis on getting good grades, getting a regular diploma, achieving the same high stardards as other regular students.

We need to remind those who work with our children of the first part of that goal: "a successful school experience."

That first broadcast and the end of this one referred to the "high expectations" we must have of the special ed student. We just need to be careful of setting expectations that are too high, thus causing undue anxiety, frustration, and feelings of failure in our children. Be sure to refer to test results (like the Vineland) that clearly indicate the age at which your child is CAPABLE of functioning, and ask teachers to set their expectations at a reasonable level that the child can achieve.

"Evening the playing field" for our kids means providing a low-stimulation environment (small, quiet classroom) and providing the structure and supervision that they need (which is lacking internally because of the neurological disability of FAS/FAE).



Another important area for our children.

(I lost most of my notes on this when my computer crashed right in the middle of the broadcast!)

I'm sure that most of us will agree that 99% of our kids behavior problems are related to the brain damage they occurred from alcohol exposure. The corpuse callosum and the frontal lobes do not function properly, so we see poor impulse control, lack of inhibitions, inappropriate social behaviors, low frustration tolerance, inability to express feelings appropriately, etc.

The one important issue where we as parents will have a conflict with the school is in determining if the behavior is directly related to the child's disability. If the behavior is disability-related, then it will be dealt with as a disability issue rather than as a behavior.

Who determines if the behavior is disability related? The IEP team. So be sure you have people on the team who understand the behavioral aspects of FAS.

Prevention is the best cure, right? Well, that goes here as well. Prevent the problem of this kind of conflict occuring by taking steps way before serious behaviors become a problem:

Be sure that certain facts are documented in your child's records, like the fact that he/she has poor impulse control and poor judgment, due to the prenatal exposure to alcohol. Inability to control impulses is a common manifestation of FAS/FAE, is what is seen in kids with STATIC ENCEPHALOPATHY, because of damage to the corpus callosum and the frontal lobes, that govern inhibition and impulse.

Make sure that the psychiatrist or psychologist who does the evaluation notes in his report that the child shows poor impulse control. When the psyc eval is done, be sure to point out to the psychologist how little control your child has over impulse, give specific examples. If you mention it enough, they will have to put it in their report, even if it is just that "mother reports that the child has problems with impulse control." Just get it in writing on a report somewhere that you can copy and show. If you document this early as part of the disability of FAS/FAE (or even ADHD if they don't have a diagnosis of FAS/FAE yet), then it can be proven later that the behaviors are disability related. Don't wait until the behaviors are out of control to try to document that they are part of the disability. You know that, and I know that, but it has to be documented by a credible professional ahead of time in order to stick when it comes to making a DETERMINATION later.



This issue is important to our kids!

IDEA now tells us we need to do FUNCTIONAL BEHAVIORAL ASSESSMENTS. These can be done many different ways. The object is to improve effectiveness and efficiency with which behavioral intervetnions are done. If it doesn't achieve this goal, it needs to be done differently.

At the next IEP, ask "Do we need to do a behavioral assessment for this child? " The answer should be yes if your child has FAS/FAE.

Every FUNCTIONAL BEHAVIORAL ASSESSMENT includes following steps:
1) Find problem.
2) Identify triggers (what happens just before the behavior)
3) Formulate Hypothesis (Why is the child doing this?) (Takes problem out of the child and into the context.)
4) Direct observation data to support hypothesis.

This last step is often missing. If your child's teacher is complaining to you about your child's behavior in school, ask if they are tracking data on the behavior? Ask for a formal behavioral assessment as noted above.


Positive Behavioral Support and Intervetion

Behavior problems: "Only 5% of all special ed students will be suspended from school during the school year."

"Too often we let kids fail over and over before intervention is applied. Prevention is a key in helping the child to succeed in school. We need to identify and respond to problem behaviors early, before they leave grade 3 for best results later. Early intervention is a KEY to success for students. "

Funds will be made available to provide in-class internvetion for behavior management for kids ages 5-9.

Positive behavioral support and intervetion:
1) Emphasizes prevention; School wide not just focused on one child
2) If want to change way child behaves, can't rely on suspension, doesn't work. Add resources to help teachers TEACH positive behavior.
3) We don't just change behaviors we don't like, but change the whole host of behaviors we do like.
4) Recogize it's not a sterile technology that works for everybody. Method has to fit the values, skills and resources of the individual child and family.

What to say if things are not going right for your child? (Non-threatening way) "We need to sit down and discuss the IEP, because I don't believe that it is working for my child the way it was intended when it was written."

Then ask for a FUNCTIONAL BEHAVIORAL ASSESSMENT. (see section above)


Definition of "Developmental Delay"

Federal definition of Developmental Delay now includes children age 3-9.

"State can choose which definition of Developmental Delay they want to work under. States are encouraged to move away from labels and to focus on FUNCTIONAL needs without having to apply a label (but child could have label if this is helpful)."

It is up to each of you families to find out what your state's definition of DD is. In Arizona, it is the same defintion they've had for 25 years: must fall into one of four categories: Autism, Cerebral Palsy, Epilipsy, and Mental Retardation (MR). The criteria for MR is based on IQ, and they changed the IQ cutoff from 75 to 70, so a child with FAS/FAE has to have an IQ of 69 or lower in order to qualify for STATE services for DD. Of course, the average IQ for FAS (according to Streissguth) is 79, and the average IQ for FAE is 90.

I have been working for over a year with my legislators on passing a law to force the State Department of Developmental Disabilities to LOOK at their criteria and to determine how many people with FUNCTIONAL disabilities need services but don't get them because they don't meet the criteria. This is a very difficult, slow, painful process. Start working with others in your state NOW, so that your own laws will be changed in time for your child to benefit.

In our local support group we have about 10 active families. Eight of these families have kids between the ages of 4 and 9 who have a diagnosis of FAS but who do not qualify for DD services in the state. Just getting them qualified for special ed is a job sometimes, but that is something I've been successful with in advocating for these familiies. What I am powerless to help them with now is getting services for them like respite care, which other families of kids with disabilities get, and which these families desperately need.

Federal criteria are based on FUNCTIONAL abilities. This is why is it so important for you to ask for the VINELAND Adaptive Behavior Scales to be done on your school-age child. While the child might have a low-normal IQ because of good reading skills and good gross motor control, the Vineland test will show that the child with FAS/FAE cannot function at age level in areas of life skills and social skills. The scores for expressive language and fine motor skills might be lower as well, but the REAL problem areas for our kids are LIFE SKILLS and SOCIAL SKILLS. Lower scores in these two areas indicate that our children cannot FUNCTION at age level and needs special support services and IEP goals in these areas.



More funding will be available (year 2000 and on) for parent training and information - (PTI). Ask your school district to provide training for parents on issues relating to behavior management of children with disabilities caused by prenatal exposure to alcohol.

Partnership Grants (local, state) will be available for personnel training. Work in a collaborative way to address the issues.

"Professors who teach the special ed teachers are not up to par with children's special needs issues." Duh!!!

Maybe some of us who have been providing training to the educators will now get paid for this valuable service we have been providing for free.



The child in special ed can stay in school through age 21 (until the day he/she turns 22).

If the special ed child leaves school before turning 22 and wants to reenter school again, he/she may do so and resume special ed services.

"Transition planning starts by age 14 (or sooner). Work related activities, investigating independent livint situations, improving life skills. What happens BEFORE high school is as important. Some reach high school without adequate preparation and are at high risk of dropping out."

Transition Planning Goal: "for kids to be successful in high school and ultimately in life."

Personal observation: John was in high school since age 13 (we skipped junior high and all the trauma that went with it, stuck with self-contained high school). So he had 8 years of high school. It was pretty much divided into academics, technical (shop, music) and life/job skills training. Of course, what mattered most was the life skills areas. I emphasized the importance of life skills early on.

All kids with FAS/FAE score lowest in the Adaptive Behavior tests (like the Vineland) in the area of SOCIAL SKILLS. So I really encourage parents to be sure that this area is addressed when writing goals and objectives in the IEP. Lack of appropriate social skills is probably one of the main reasons our kids can't keep jobs after they get out of school.

Address social skills during ALL years of school. This is ultimately more important than spelling, multiplication, history, or science. In my opinion, it should be the number one area to work on at all ages.


Standardized Testing

"What about these kids that are now mandated in all school testing?"

That bothers me too. And obviously it bothers other parents, as this was brought up this time and last time. But it is now the law and there's not much we can do about it except help our children cope with any anxiety they might feel about it.

The IDEA administration talks a lot about ACCOUNTABILITY and holding ALL children up to the same high standards.

But all I can hear is the voice in my head (Dr. Sumner's voice from the FAS conference) saying how unreasonably high expectations place such great stress on our kids that it is one of their biggest problems, with chronic frustration and poor self esteem as the result.

I'm sure that we, as parents, can prepare our kids for the anxiety they might feel when they have to take these tests.

If they are in a self-contained classroom, the special ed teacher will keep a low-key focus on this general testing. It's the kids in the regular classroom that I worry about. The pressure to keep up with their peers much just add to their anxiety. I was an A student, and even I felt terribly anxious about taking these standardized tests, mostly because they had so many difficult questions that I didn't understand. If I was a good student and I had anxiety about it, imagine what the special ed student must feel when faced with all those questions about things that they don't have a clue how to answer. This could add to their feeling "stupid."

But we can talk to our kids ahead of time, and tell them, "This test is important to your teacher and to your school, but it is not important for you, so don't worry about. Do you best, then we won't concern ourselves with the results, because they really don't matter. The test will seem really, really, hard, but even the A students will think it is hard. When you come home after the test, we will do something special to celebrate your achievements."



Identify children with invisible disabilities early.

Common goal between administrators and parents: improved school experience for your child. This is a good place to start communication, so you can work as a team and not as adversaries.

Spec. ed teachers working in regular classrooms may work with regular students as well. They might pick up on symptoms in the regular kids' behavior that might indicate an assessment for special ed services, adding to the early intervention to prevent more serious problems later.

Funds will be withheld from states that do not comply with the law.

Data on the states that are being monitored is available. NJ has been monitored intensely and will be held to improve their standards.

Why is it important for special ed child to participate in assessment? Child needs to be held to the same high standards as other children. Overprotecting a child does not prepare the child for success in the future.

IDEA is a law, a tool. But it is more... it is a force of change for the education of our children.


My personal opinion: We as parents of kids with FAS/FAE are not allowed to be protective enough, we are often accused of being over-protective. But we know what happens when we give our kids "freedom" when we slack off on the supervision - they fail, they get into trouble, they are punished, their self-esteem takes a nose dive. We know that because of their disability they need STRUCTURE and SUPERVISION, supports that are as neccessary for our kids as crutches are for a child with CP or a hearing aide is for a child who is hearing impaired or a wheelchair for a child who has MD. When we provide STRUCTURE and SUPERVISION, this is sometimes erroneously perceived as being over-protective. I have spoken with many mothers who were pressured into "letting go" with the result that their child ended up in jail. They now wish they had not listened to others. They wish they had been SUPER protective. But it is too late now for some. I guess we parents have to fight peer pressure too!

I agree also that the IDEA is more than just a law. It is a force for change that we need to learn to be familiar with, and to use if we are going to help our kids get what they need, what they REALLY need, not just what others say they need.

May the FORCE (of IDEA) be with you.


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