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The Ideal IEP Meeting

  • Posted on September 5, 2012 at 8:00 AM

So, what would the ideal IEP meeting look like for you? Would you get everything you asked for? Everything you wanted? Or would the team collaborate—discussing your child’s needs and how the school could help meet those needs—to determine what was best for your child?

How about both?

To be fair, this meeting was simply to revise Willy’s IEP to address the needs raised by his new diagnosis of epilepsy. We did not revisit goals at this time. We simply discussed his new needs and how to accommodate those needs. Even so, it went surprisingly well!

Lately, I’ve been working with a co-author on a book about special education. I have also been editing his book on IEP collaboration. I’ve learned a lot working with him, and I’m confident I have taught him a lot as well. It’s a very fruitful, effective partnership (though, not in the traditional, legal, business sense of the word).

I brought that knowledge to bear as I prepared for this IEP. I even brought along two advocates—one especially familiar with Willy and one especially familiar with epilepsy. I was prepared to negotiate. I was prepared to advocate for my son’s needs.

And I did—no negotiation needed. I was simply “given the floor.” I explained what has happened over the summer, what I knew Willy needed, what I suspected would be beneficial, and that’s what was the team agreed to do. There was a lot of discussion, but it was collaborative and productive and focused entirely on Willy’s needs—including the training the staff would need to meet Willy’s needs.

The meeting went beautifully!

Afterwards, I thought a great deal about how that happened. The “training” I’d received by working with my co-author had certainly enhanced my advocacy skills—and I’m going to provide him with a quote for his book to that effect. But, as much as my modesty would like to give him all the credit, I also have to acknowledge that there was a lot of solid groundwork that made this possible.

You see, when I go into an IEP meeting, my focus is on my children. This means that I don’t always get what I want or even what I think is right. Instead, I work with the trained professionals to get (to the best of our ability) what my children need. Some battles are longer than others—and feel very much like battles—such as the years it took to convince school staff (in thought, word, and deed) that neither Alex nor Ben were/are intellectually disabled. (Again, there’s nothing wrong with being intellectually disabled, aka retarded; but there is something wrong with assuming that a child who cannot talk is intellectually disabled and there is also something wrong with providing inappropriate services because of such an assumption.) Some battles aren’t battles at all, like graduating Willy from a one-on-one aide to a team-teaching environment. The point is, if you start with your child’s needs, then discuss how to meet those needs, and finally ensure that the services provided satisfy those needs, well, sometimes you don’t like what you get, even when you get exactly what your child needs.

I didn’t like the idea of Ben switching schools in the middle of his elementary school education. But, as the year starts and I’ve had a chance to meet with his new teacher and help prepare everyone involved for the transition, I’m confident it’s the right choice for Ben. Ben’s needs will be better met at the new school and that’s all that matters.

When you go into an IEP meeting with that attitude, when you work with staff to achieve those ends, then you build a reputation in the school district and you build a relationship with the school staff. When you provide useful input and make reasonable recommendations—versus asserting your opinions as facts and making unattainable demands—you build a foundation of trust. You respect the professionalism of those on your child’s team and you show your own “professionalism” as a parent and as an advocate for your child.

That groundwork made this ideal IEP possible. The case manager trusted me to provide useable information to the IEP team and to make reasonable recommendations. In this case, they had more questions than answers, and my answers (and the answers provided by the advocates I brought to assist in providing answers) were respected and trusted. That trust empowered them to accept all the recommendations we proposed and to propose recommendations of their own that would completely accommodate the needs we identified. We worked together, collaboratively, with Willy’s needs in mind.

In a few months, when his baseline is re-established with a new, comprehensive three-year evaluation and we sit down for a full-blown IEP meeting, things might change. By then, we’ll know more about how Willy’s epilepsy effects his education. But, for now, we’ve done all we can and we’re confident Willy’s going to have a great year!

What Are Accommodations?

  • Posted on July 17, 2010 at 9:25 PM

For anyone out there waiting with bated breath for my third post on organization, I must apologize; this isn’t it.  I got distracted—not a good commendation for my organizational skills, but there it is.

Recently Astrid wrote a response post, on which a certain blogger made the claim that accommodations are insufficient for people with LF autism.  (I’m side-stepping the debate on whether HF/LF is a fair and reasonable distinction.)  Instead, I will jump right to the part where the example cited by this individual—which was intended to demonstrate the inadequacy of accommodations—included accommodations as a means of achieving a satisfactory outcome.

This implies to me that “accommodations” is a word that is flung around far more often than it is understood.  So, what constitutes an accommodation?

Let’s go back to our friend, the dictionary:

ac·com·mo·da·tion –noun

1. the act of accommodating; state or process of being accommodated; adaptation.

2. adjustment of differences; reconciliation.

3. Sociology. a process of mutual adaptation between persons or groups, usually achieved by eliminating or reducing hostility, as by compromise or arbitration.

4. anything that supplies a need, want, favor, convenience, etc.

5. Usually, accommodations.

    a. lodging.

    b. food and lodging.

    c. a seat, berth, or other facilities for a passenger on a train, plane, etc.

6. readiness to aid or please others; obligingness.

7. a loan.

8. Ophthalmology. the automatic adjustment by which the eye adapts itself to distinct vision at different distances.

9. accommodation bill.

Take a close look at definition 4:  “anything that supplies a need, want, favor, convenience, etc.”

If a person can’t communicate verbally, providing them with a Picture Exchange Communication system is an accommodation—it supplies a needed means of communication.

If a person can’t walk independently, providing them with a cane or a wheelchair is a form of accommodation—it supplies a needed means of mobility.

If a person can’t shout loud enough for somebody in the next state to hear them clearly, providing them with a telephone with long distance service is a form of accommodation—it supplies a wanted means of communication over long distances.

If you change a situation (whether that involves physical or procedural change) to satisfy an unmet need or want, or to increase the convenience of a situation, you are providing an accommodation.  If accommodations were provided to individuals with disabilities, their potential would not be hampered by the same limitations they face without accommodations.  The crux of the accommodations argument, in my opinion, is two-fold:  Do we prioritize accommodations sufficiently to meet the needs of members of our society?  Do we prioritize the design and development of accommodations sufficiently to meet the needs of members of our society?

Accommodations could be used to assist every individual in our societies to succeed if appropriate accommodations befitting our technological development were designed and distributed to those who need them.  Even in socialist countries this does not occur—neither the design nor the distribution—because individuals who need such accommodations are not sufficiently valued to justify the expense.

In short, by raising the value of individuals with disabilities (acceptance) and advocating appropriate accommodations, I seek to enable individuals with all abilities to live up to their potential.  For some, the accommodations they need will be easily come by.  Others will need more accommodations—perhaps even accommodations that do not yet exist.  That does not mean that accommodations are, in and of themselves, inadequate to meet the given needs; that means we need to improve our design and distribution of accommodations to meet the existing need for them.

The (Un)Importance of Words

  • Posted on May 10, 2010 at 2:20 AM

Don’t get me wrong.  I love words.  I believe the words we use and the way we use them are very important.  But, when it comes to the issues of disabilities—acceptance, inclusion, empowerment, and accommodations—words are of secondary importance.

A new reader recently suggested that I’m a proponent of people-first language.  While this assertion is wholly understandable, it is not accurate.

As a writer, I find people-first language to be clumsy.  It interrupts the flow of the prose.  Yet, I would readily and easily sacrifice the flow of my prose for the sake of putting people first.

Except, people-first language doesn’t do that.

People-first language doesn’t put people first, conceptually speaking.  It’s a political device that puts politics first.  I have far too often heard others use people-first language in an ablistic, derogatory, people-last manner.

“My son is a child with autism.  It’s so horrible having a child with autism that I’ve considered taking him by the hand and jumping off a bridge.”

People-first language is only as good as the thinking of its user.  Disability-first language is only as bad as the thinking of its user.  When I say my children with autism or my autistic children, my language has changed but my thinking has not.  If I use auties, autists, or autistic, my language has changed but my thinking has not.  My children are always people first in my mind.  That’s how I conceptualize them.  They are people.  Facets of those people manifest themselves in behaviors psychologists (and, in turn, society) describe as autism.  Thus, they are people with autism.

People-first language does not change people’s thinking.  People-first language just changes their speaking.  To change people’s minds, their thinking needs to change.  Language can help.  People-first language can help.  But people-first language is not the solution; and it is often the smoke-screen that disguises the problem.

Yet…  Autism is somewhat unique in this respect.  While I do not see “blind people” as being blind first and people second regardless of the language I use, I also do not feel comfortable citing such a disability first and the person second.  I prefer, clunky as it is, to use “person with a visual impairment.”  Though I will gladly use whatever the individual prefers.  The same goes for other physical or mental/intellectual disabilities.

Part of the reason why I make this distinction is because Western culture has, for so very long, seen people with these kinds of disabilities as being not-whole, and therefore not valuable.  It’s so easy to see the disability first.  Yet, by putting the person first we can hope (however much in vain) that people will start seeing the people, regardless of their abilities/disabilities.

Yet…  The more my path crosses with other disability rights advocates—those not directly associated with neurodiversity—the more I see advocates re-claiming words like “crip.”  I try to respect and appreciate what they’re trying to do.  I try.  But the idea of calling another human being a “crip” makes me uncomfortable.  But, if that is their choice, who am I to say they’re wrong?

In short, I am an advocate of people-first thinking.  If we need people-first language to facilitate that thinking, then so be it.  Someday I hope people-first thinking will be so strongly ingrained in our societal make-up that we can talk with and about people with any disability without having to think about what to call them.

***

Now, on a different note, if you’re interested in exploring language in a poetic style, I would recommend checking out http://www.wordgathering.com/ .  The Inglis House Poetry Contest has two categories.  One is open to all.  The other is limited to writers with disabilities.  The subject of poems submitted to both categories is disabilities.  There’s no entry fee, but there is a prize.  So, if you like to play with words give it a try!  The deadline is June 1st, though, so you’ve got to be quick!

Blogging Against Disablism: On Assuming Impairment

  • Posted on May 1, 2010 at 10:19 PM

Executive Summary:  Disablism happens because the majority of people (US-specific) believe physical, mental or psychological differences make a person disabled.  Yet the majority has technologies and accommodations that make them able.  The reason why the “disabled” sub-population lacks appropriate technologies and accommodations is because their needs differ from those of the majority.  It is this lack of appropriate technologies and accommodations that truly disable or impair these individuals.  As a society we can allocate our resources in order enable everyone.  Will we choose to do so?

Disablism refers to the societal tendency to single out, exclude or mistreat people with physical, mental or psychological impairments because of those impairments.  But even here, in this simple definition, disablism intrudes.  The physical, mental or psychological differences are assumed to impair (meaning to lessen the quality, strength, or effectiveness of) the person with said differences.

I wish to challenge that assumption.  In the US this assumption is the foundation of the paradigm (meaning the worldview formed on the basis of beliefs, teachings, and experiences that shapes the perceptions of an individual when processing new teachings and experiences) held by the majority.  Within this paradigm it is the disability or impairment—the mental, physical or psychological difference—that impairs or lessens a person’s ability to participate in society.

Obviously!  That which is obvious is not necessarily true.

We are all more able, more empowered, and more effective with the use of technologies and accommodations that help us go about our daily tasks.  For example, we are all impaired when it comes to talking over long distances—so we use telephones, cell phones, Web cams, chat rooms, and e-mail to communicate over these distances.  People who do not have these communication technologies are accommodated through public phones and library computers.  We are all impaired when it comes to traveling over a long distance in a timely manner—so we use cars, trucks, and bicycles to span these distances.  People who do not have these transportation technologies are accommodated with buses, trains, and other forms of public transportation.  We are all impaired when it comes to learning—so we use textbooks, schools, black boards, Web sites, Power Point presentations, and other technologies to condense and teach the things we all need to learn.  People who cannot afford access to these education technologies attend public schools, visit public libraries, and get grants and loans from the federal government to attend technical colleges and universities.

Because “we all” have these impairments, the technologies and accommodations we need to improve our effectiveness are readily available.  Individuals with disabilities, as a whole, make up a significant sub-section of our population.  However, the specific technologies and accommodations that can compensate for their individual differences are not readily available, because the technologies and accommodations that would satisfy their needs are often unique to them.  At the very least, they’re not particularly useful to the majority.

That is the difference.  The impairments “we all” have our alleviated with technologies and accommodations; the impairments “they” have are not, because the technologies and accommodations “they” need are of no use to “us.”

Thus, the pervasive American paradigm is based on the “we all” standard.  If “we all” need something, then it is normal and “we all” obtain access to the technologies and accommodations we need; even if it means burying our country under a huge burden of debt.  If “some” need something to help them do what most do “naturally,” then those who with special needs are impaired or disabled and satisfying their needs is a burden “we all” won’t accept or tolerate.

Is this the land of the free—where so many are impaired and boxed in by the barriers we create as a society?  It’s time to shift our paradigm (paradigm shift: the internalization of a new belief, teaching or experience that dramatically changes the worldview of an individual).  The individual is not impaired because of their physical, mental or psychological difference; the individual is impaired because he or she lacks the accommodations or technologies that would enable him or her to participate effectively.  A lack we the people created out of our own ignorance and small-mindedness.

The truth is this: With the technologies and accommodations that are right for them, individuals with physical, mental or psychological differences can participate in and contribute to our society.  They can live not as “disabled” or “impaired” individuals, but as able, powerful, effective people—people whose differences no longer exclude them from the world of the majority.  “We all” would be richer for it, from an economic, cultural and an individual perspective.

Yet our society is engineered with the majority in mind—the technologies and accommodations we as a people devote most of our energies to are those that the majority requires and the majority demands.  Those who engineer our society impair those who need different technologies and different accommodations, often doing so unconsciously and unintentionally.  It never occurred to the majority that it should be any other way.

Is that really what we want?  Is that the people we want to be?  I know I don’t.  Do you?