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Where Are the Parents?

Publication Date: 2004-02-29

Here's a hard-hitting commentary on Congressional stonewalling on IDEA.

This is from


FEBRUARY 26, 2004


Every time I think of that "Dear Republican Colleague" memo circulated in the House of Representatives last spring, my blood boils.

In an attempt to thwart the impact of the national parent/advocate call-in day against H.R.1350, legislators -- our supposed VOICE in Congress -- took active steps to ensure that our voices were disregarded, and they apparently succeeded.

Tens of thousands of parents, students, and advocates called the House of Representatives on April 29, 2003 to urge a "NO" vote on the bill to reauthorize the IDEA.

Yes, I said tens of thousands!

Legislators then had the nerve to claim they weren?t hearing from parents.

Maybe your representative wasn?t swayed by this tactic. Bully for them! However, I don?t recall a single representative standing up to say to their colleagues, ?How DARE you? How dare you throw sincere attempts to be heard back in the faces of parents and advocates? That goes against EVERYTHING we claim to love about our democracy! And how DARE you claim you?re not hearing from those very same parents you just kicked to the curb? You have taken hypocrisy to all new heights. I am ashamed of you!"

Nope. No outcry. No flames. What should have sparked at least some reaction from the more principled members of Congress simply fizzled in the fetid waters of politics as usual.

In 1996, a parent named Sue Stuyvesant penned an essay entitled Where Are The Parents? after a school official complained that there were too few parents of children with disabilities involved with the local PTA. This powerful essay is included here in its entirety, for its message should not be missed.

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child's medical needs can be properly addressed.

They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet.

They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube.

They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering: is this the time when my child doesn't pull through?

They are sitting patiently, in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ.

They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm.

They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive.

They are struggling to keep a marriage together, because adversity does not always bring you closer.

They are working 2 and sometime 3 jobs in order to keep up with the extra expenses.

And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn't cost them anything.

They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive.

By Sue Stuyvesant

Perhaps this will give Congress some context. Perhaps this will finally enable Congress to understand that any contact whatsoever from the parent of a child with disabilities should never be trivialized or disregarded. Behind each parent?s letter or phone call are thousands of others who are quite literally fighting a constant battle for their family?s survival.

And yet, when those parents do manage to write or call, their extraordinary efforts are often met with the scorn and derision evident in that "Dear Republican Colleague" memo.

It is not unusual for OCLB to receive very, very brief ?Thank You!? notes from parents. The time stamp on these e-mails is typically the wee hours of the morning. That?s when these parents have a few seconds to breathe, to look beyond their immediate, and often crisis, situations at the broader picture, to wish they had more time & energy for advocacy, and to applaud those who are temporarily able to carry the torch.

Ask any parent of a child with disabilities their greatest stressors. Invariably, the answer is not their child, but the systems with which they must deal in order ensure their child?s safety, security, and survival. Why must that also include Congress?

The fire that is OCLB was ignited by that incendiary "Dear Republican Colleague" memo. It is fueled by the fear, the anguish, and the rage of the parents. It will not be doused by empty rhetoric, meaningless compromise, or false partnership.

This fire can only be extinguished by Congress recognizing and acting upon the truth:

* IDEA ?97 does not need to be revised. It needs to be enforced.

* The proposed revisions to IDEA will not result in improved educational outcomes for students with disabilities.

* The reasons given for the proposed revisions to IDEA are not based on solid data, but on unsubstantiated anecdotal evidence.

* The driving factors behind each and every proposed revision are administrative convenience and performance anxiety.

* Children with disabilities are being sold out in the name of compromise.

We, as parents of children with disabilities ourselves, realize that it is extremely difficult to find the time and the energy to go above & beyond the call of an already extraordinarily challenging duty. We appreciate every e-mail, every letter to Congress, and every phone call ? because we know what it cost you.

So, the next time you?re up at 2:00am visiting Our Children Left Behind, let us know how you?re doing ? and how we?re doing. We love to hear from you!

Debi Lewis, today's parentvolunteer@ourchildrenleftbehind.com


?2004 Our Children Left Behind.

Our Children Left Behind [OCLB] was created and is owned/operated by parent volunteers (Sandy Alperstein, Tricia & Calvin Luker, Shari Krishnan, and Debi Lewis). Permission to forward, copy, and/or post this article is granted provided that it is unedited and attributed to the author(s) and www.ourchildrenleftbehind.com. For more about OCLB or to share information, please contact parentvolunteer@ourchildrenleftbehind.com.

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