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Marcie Roth's Don't Take Sides on Inclusion

  'It is truly taking a village.'



"It became clear that our commitment to our philosophy to inclusion could actually be hurting our son. . . '

am not an advocate for inclusion. As much as I would like to see it work, it does not. You cannot take kids who have learning problems put them into a resouce room with 8 other children age ranges from K-4, have them shuffled from classroom to classroom and expect them to learn. They start regress and the self esteam goes down, to where they cannot function and think that everyone is better than them. They need to be in an environment that they feel good about themselves can learn and grow.

My son was born 11.5 weeks early, weighing 2 lb. 15 oz. He has been in special education since the age of 3 he is now 11. Having gone through early intervention and the preschool handicapped program, I figured that he was getting a head start and would progress quicker. When he was 5 he attended Kindergarten and the special program in the afternoon. Since my school did not offer the preschool program he was bused to a nearby school district. When he was 7 (1st grade) he went back to our main school district. He attended the resource room and regular class. His teachers were great and he was progressing very slowly. He was still functioning at a 4-year-old level, but he did OK. 

When he was 9 years old, things started to change. For many years I had asked my school district about a summer program, I was told there was none for him and that we had to prove "loss and recoupment from one year to the next." I challenged them via a mediator and lost. Children with minor problems receive summer school, but my son, although he was 2 years behind his grade, could not. Third grade was a total disaster. I had to hire an attorney and do outside tsting only to find out that my son had auditory processing problems, was severely dyslexic and was ADHD. Ritalin, which is controversial, is the best thing for him. He can function and concentrate; however, because he was shuffled from room to room he had not sense of belonging. He knew he was different and so did the other kids.

The resource room was a three ring circus. Kids were coming and going; he could not function. he regressed so badly that by May he was reading on a kindergarten level. Because his IQ was in the average range, he knew that he was different and he could not handle the fact the kids that were much younger were far advanced. The school agreed that they could not help him. Jamie has been in an outside program for the past 2 yearsand is progressing nicely.

Would I like to have him in my school district, YES -- but at what expense? The school is not equipped to handle his disabilities. I think the program itself stinks. I think special education needs to be revamped and that regional school districts should work together. The cost for out of district placement is out of control. Any change has to come from the top; however, I think parents and teachers should be involved -- not necessarily the Child Study Teams, though. In my instance the CSTs were the enemy.

Gayle Walsh

This is exactly why I decided to homeschool my child. The battles I had when he was 4 and in preschool were totally unbelievable and the tales I hear from parents of older children offer no hope. We decided we couldn't and wouldn't offer up our son and his "education" in order to attempt to make advances within a society that is stuck in the 60's. We homeschool through a charter school and recieve all the services our son requires. He has great friends and lots of social interaction. It took a while but we found a group of homeschooled kids and their families who are not bigots and actually welcome people period. All that energy and frustration and money spent not getting what you want can be used to get exactly what you want and what your child needs.


After two wonderful years at an inclusive school in Idaho we moved to another state. For six and a half years we struggled to have Alice included, but for every step we took forward we took three steps backwards.

Over time, Alice's behavior at school became worse and worse and on several occasions we had a sheriff's deputy on our doorstep to inform us that they had been called and reports filed with them. We were lucky to have experts come to our aid without us having to pay them out of our own pockets. But in the last two years we spent over six thousand dollars in attorney fees to mediate one set of circumstances and then to file a due process over another set of circumstances.

The end result is that Alice is no longer at home. She attends a residential school that is tops internationally. It is located over one thousand miles from our home. In her first three months there she made more progress than in all the six and a half years in the local school district. Cost to the district is well over one hundred thousand dollars a year.

In those six and a half years I have come up with my own formula for what creates success in schools. Good knowledge is key, common sense even more important. The ability to communicate, cooperate and collaborate is essential. Last of all, people need to really care about kids and be dedicated to them. A lack in any of these areas will cause problems.

However, what is sad is that in all the laws, including IDEA and now No Child Left Behind, there is no way we can force people to care. There is no way we can force anyone to communicate with us cooperatively if they don't want to. There is no way we can force them to accept our own personal knowledge or common sense. And it is always the child who loses in these circumstances.

I am grateful for the school that Alice now attends. There are people there with excellent knowledge, common sense and dedication who communicate and collaborate with us cooperatively to meet Alice's needs. And in eight months I have lost track of the number of people who have told me that they love my daughter!

Ironically too, she is out in public much more often then she ever was when she was in school here. Peer interaction is a long-range goal that I am still concerned about. We will address it over time.

I feel I have walked a road similar to the one Marcie Roth has. It was long, hard and heartbreaking. It will change some with changes in the laws. It will change more when people are willing to acknowledge that all children are special and all children have lessons to learn from us and we have lessons to learn from them. It will change when people want to keep their doors open for all children and are dedicated enough to look for ways to make that happen.

If that day ever comes universally, then we as parents can know that we have not struggled in vain. Then we will truly be able to celebrate.

Doug Lynn, Klamath Falls, OR

I'm well acquainted with poor inclusion practices -- and good ones as well. In my daughter's case it was a class-by-class challenge. Each year found us all reinventing the wheel. We [she] prevailed at her hearing, but that old saying holds true: "you can take a horse to water but you can't make him/her drink." She has finished 12 years of "inclusive" education -- "integrated" would have been better . Truly successful inclusion is not a child-by-child process -- it's embraced by an entire school or district.

It is indeed a sad commentary that 12+ years have wrought so few changes in the way special education services are delivered.  

J. Taylor

My neighborhood school is an enigma -- they actually "get it" and are doing a wonderful job of including my son. Parents around the district seem to think it is something that I have done to make it work -- on the contrary, it is the entire school's efforts -- the efforts they WANT to make -- which are making it a success. From the principal to the custodians, the nondisabled children, their parents and the PTA -- it is truly taking a village.

As I have sadly told other parents, we can't legislate attitudes: Roth, it seems, hit the attitude "brick wall." I hope this personal struggle will make her stronger to keep fighting for our kids' rights.

Sandra McElwee

If every war were fought as a single battle, the world would be a very different place. While I sympathize with Marcie Roth (and every other parent who has experiences the agony of watching their child flounder in regular classrooms), the "inclusive" classroom, or whatever we choose to call it, is the proper place for all children. In no way, however, do I think Ms. Roth made the wrong decision for her son. She did what parents all over the country do: get the best education they can for their kids. No; who's to blame is her son's unfeeling, irresponsible school district that continues to support an archaic education system that has forgotten what it is there for. Maybe it's not Roth's time to push the school over the edge, but she can rest assured she has had an impact. Hopefully, it will be the next child's parents who supply the proverbial straw.

Carl Evertsbusch, Anchorage, AK

Many school districts are unwilling to achieve the level of expertise, and pay for the level of services, necessary to educate children with certain disabilities. Parents are thus presented with the choice of "bad inclusion" or "better" specialized schools that lack many of the resources --including opportunity for interaction with nondisabled kids -- that the home district has.

The Individuals with Disabilities Education Act -- IDEA -- should not be forcing such a choice; kids should be entitled to expert education and inclusion opportunities. However, even under the current reauthorization proposals, the feds are loathe to mandate expertise on the local districts, and the states, who provide parents the administrative "remedies" when the districts non-fease, load up their appellate panels with former school administrators whose attitudes about special education are hostile to the Congressional intent of IDEA.

Our family decided, as did Marcie Roth, that a safe, expert environment was of fundamental import to our child and that we'd fight the inclusion fight another day. It's sad, because the system is capable of providing both for these children.

Mike Jarman, President, The Vista School, Middletown, PA

The words Marcie Roth said have haunted me, too. I spent 15 years fighting for full inclusion in New Jersey, where segregated schools are abundant. I wrote on the topic. I served as a consultant to the NJ Dept. of Education, The Arc of NJ and others. I chaired a legislative task force. I used to go to Individualized Education Plan meetings for a living -- helping other parents. My husband works for NJ's P&A system. We know our rights and who to go to when they are not being protected.

But today my son, now 9, is in a segregated school, after 4 years of a good fight. I have to say, the district tried -- they really tried, but they could never get it right. He had good teachers who tried hard and cared, but he needed more than that. There was too much staff turnover, not enough expertise, no planning time for teachers, inflexible schedules and an administrative process that made small decisions take months.

Last year, it became clear to both my husband and me that our commitment to our philosophy of inclusion could actually be hurting our son. Every day. He was not reading, he was teased an bullied by his peers, he was not getting occupational therapy, and we were spending EVERY night after school driving around Central NJ to get the services that his school couldn't provide decently -- social skills instruction and coaching, behavior therapy, tutoring in reading. Our out-of-pocket expenses were in the thousands of dollars, too. And my daughter spent her evenings in the car or in waiting rooms.

Now, our son is thriving in a segregated school, with 8 other kids in his class, and four adults. For the first time in my life, I went to his IEP meeting and found that the professionals around the table knew more about how to support and educate him than I did. They had ideas for me at home. They told ME how they were going to address his problems. They reported on progress, not "behavior." I left feeling confident, instead of having to prepare myself for another fight.

He is doing fine. He loves school. His is proud of his progress and believes now (for the first time) that he will learn to read! His social skills are already looking better. His high level of skill and interest in science has new currency for him -- he is not seen by his peers as "weird"; he is seen as smart. And he is much less anxious about everything. His teachers enjoy him and see him as a valuable member of his school community. They see his spark and his gifts. Our whole family is recovering from the overwhelming stress of managing (and even providing) our son's education in public school.

He does not mind the hour and 15 minute ride. Every morning, though, when that short yellow bus pulls away from my driveway, I still feel a twang of guilt.

Your article reminded me that I did not give up -- I made a choice for HIM. And just as there are costs, there are many benefits.

Brenda Considine

I'm not sure that the legal route is the way to go. I tried that route myself and it didn't work. She must not feel guilty although that is easy to say because when you fail to convince the authorities, you feel you fail your child. 

I think we need a grassroots movement to change attitudes because attitudes are everything. When a newspaper can report on the efficacy of new tests to detect Down Syndrome earlier in the womb -- and no one questions it --this gives everyone the idea that disability has to be stamped out and is not something we want. Most of the public do not think about it and are easily brainwashed by such articles. Those of us who live and play with someone with a disability fight every day with people who hold these beliefs unconsciously, because of the conditioning they are subjected to.

Most people express abhorrence for eugenics, but it is practiced every day without anyone asking "why are we doing this?" 

How do we change attitudes? We have to think "outside the box" in order to get through to the people who will spend huge amounts of taxpayer dollars to exclude a child.

Sandy Phillips

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