Your Special Child blog

People First Language

noreply@blogger.com (Julie Swanson) — Mon, 17 Dec 2012 01:03:00 +0000

Talking about people with differences can become a touchy subject. Everyone seems to have an opinion and sometimes we end up offending people, even if we try not to offend.

For me, disability impacts me personally, so I recognize that I can be sensitive about it. In my case, I have a son who has autism. It gets under my skin when I hear people say "he's autistic," or "he suffers from autism," as examples. When I refer to my son, I say "he has autism" because, for me, his autism is not the only thing that I believe defines him. You will never hear me say he "suffers" from autism. I just can't define my son as "suffering." If anything, he "flourishes."

Here's a simple thing to consider. Put the person first, this is called person-first language. It suggests people to say things like "Susie has Downs syndrome," rather than "she suffers from Down syndrome," or "she's Downs."

Imagine if we did this for people who might not have a disability, but have definable qualities. For example, bitchy Joanne, mean Robert, cheater Peter. I'm obviously try to make a point here. Why offend a person who has a disability or someone who loves them, when it's just so easy to put the person first.

You may still end up offending someone who believes their disability or difference does define them, but you might be less likely to do so.

Examples of People First Language

Say This	Not This
people with disabilities	the handicapped, the disabled
people without disabilities	normal, healthy, whole or typical people
person who has a congenital disability	person with a birth defect
person who has (or has been diagnosed with)...	person afflicted with, suffers from, a victim of...
person who has Down syndrome	Downs person, mongoloid, mongol
person who has (or has been diagnosed with) autism	the autistic
person with quadriplegia, person with paraplegia, person diagnosed with a physical disability	a quadriplegic, a paraplegic
person with a physical disability	a cripple
person of short stature, little person	a dwarf, a midget
person who is unable to speak, person who uses a communication device	dumb, mute
people who are blind, person who is visually impaired	the blind
person with a learning disability	learning disabled
person diagnosed with a mental health condition	crazy, insane, psycho, mentally ill, emotionally disturbed, demented
person diagnosed with a cognitive disability or with an intellectual and developmental disability	mentally retarded, retarded, slow, idiot, moron
student who receives special education services	special ed student, special education student
person who uses a wheelchair or a mobility chair	confined to a wheelchair; wheelchair bound
accessible parking, bathrooms, etc.	handicapped parking, bathrooms, etc.

How is the Skill Measured?

noreply@blogger.com (Julie Swanson) — Mon, 17 Dec 2012 00:18:00 +0000

"The devil is in the details"

When developing your child's IEP (Individualized Education Plan) goals with your child's school team, make sure you understand how your child's progress toward their goals is going to be measured.

In my experience, some parents may not pay attention to the details in their child's IEP goals where it explains that it will be measured by "observation," "pre and post-line data," or "work samples," to name a couple of examples.

I simply want to encourage parents to take a look at the goals and make a note of how they are measured being measured.

It's Not About Access Anymore

noreply@blogger.com (Julie Swanson) — Mon, 29 Oct 2012 03:18:00 +0000

Believe it or not, there was a day when children who had disabilities were turned away from the school house doors.

Thank goodness, those days are over. Today, students who have disabilities are entitled to an "Appropriate" education in addition to be allowed in the building.

No, I Have Not Met The Student

noreply@blogger.com (Julie Swanson) — Mon, 29 Oct 2012 03:14:00 +0000

I am frequently asked by IEP team members if, as the special education advocate, I have met the student for whom I am advocating. In fact, many team members have been quite offended if I haven't.

Let me explain, as I recently did to a director of special education, why I will not apologize or back pedal for not meeting the student.

I am a special education advocate. I am not a speech and language pathologist, special education teacher, regular education teacher, psychologist, social worker, occupational therapist or physical therapist. As a special education advocate is it my role to work with parents toward the goal of getting an appropriate program in place for their child under the rights they have in the IDEA (Individuals with Disabilities Education Act).

The IEP team must consider the professional recommendations of professionals who evaluate and make recommendations about a students education based on their area of expertise, such as a speech and language pathology, psychology, occupational therapy, psychiatry, etc.. As a special education advocate, I am not the professional who should have an opinion based on a field in which I am not an expert regarding their education program

While it's always a bonus for me to meet the student, I do not believe it is my role to be a member of the team who dictates intervention, programming or specific evaluations. However, I can certainly be that professional who guides the team toward the professionals who can.

I am the person on the team who is ever mindful of parents and students rights under the IDEA. And believe me, I have plenty to say about that!

Please Don't Call Me "Mom"

noreply@blogger.com (Julie Swanson) — Mon, 29 Oct 2012 01:51:00 +0000

My name is "Julie," please don't call me "mom"

There is nowhere I personally go in my daily life where adults call me "mom," so it is with great wonder that it happens to the mothers with whom I work at IEP team meetings with regularity. Now for some reason, I don't experience that fathers are referred to as "dad" by staff. It is a practice that seems to be reserved for mothers.

As a parent of a child with a disability and a special education advocate, this practice used by school staff really bothers me. It usually begins right at the beginning of the meeting when everyone goes around and introduces themselves. Parents will say their names, usually followed by "I'm the mom or dad." So for the rest of the meeting everyone on the team calls the mother "mom."

While the speech and language pathologist says "I'm Susie, the speech and language pathologist," nobody refers to her as "speech and language pathologist." People around the table call her "Susie."

The cynic in me believes that referring to mothers as "mom" lessens their position as an equal team member. Being the "mom" to my sons is my greatest accomplishment in life, but I still want to be called by my name, it's Julie.

I have a solution for it. As an advocate, I NEVER refer to the parents with whom I work as "mom," or "dad." I call them by their names. In this way, I try to model the behavior I would hope the rest of the team follows. It rarely happens that team follows suit, by the way.

As a parent, when I am at my own IEP team meetings, if a staff member calls me "mom," I politely say "oh, please call me Julie." I advise the parents with whom I work to do the same.

Perhaps you are not offended when IEP team members call you "mom" or "dad." I suppose it's a personal thing, but having attended hundreds upon hundreds of IEP team meeting with parents, my opinion is that parents should be treated equally on the team. You are a member of the team and, it is my opinion, you should be called by your name, just as everyone else is.

No, You Shouldn't Have to Hire an Advocate!

noreply@blogger.com (Julie Swanson) — Fri, 17 Aug 2012 00:08:00 +0000

I hear many parents and guardians say that they shouldn't have to hire an advocate to get their child an appropriate program. I agree. No one should have to hire anyone to secure an appropriate education for their child. I truly wish that all school districts would provide all students who have disabilities a Free Appropriate Public Education (FAPE) all of the time. In the meantime......

No matter what measure a parent or guardian takes to secure an appropriate education for their child, the good news is that the IDEA (Individuals with Disabilities Education Act) is a federal law that exists to be ENFORCED!

So I say, if you are a parent or guardian and you retain a special education advocate to help you enforce the IDEA, learn as much about the process and the IDEA from your advocate.

Because knowledge is Power!

Early Dismissal Everyday is Not O.K.

noreply@blogger.com (Julie Swanson) — Thu, 16 Aug 2012 02:26:00 +0000

All the middle school kids in your neighborhood get on the school bus together in the morning at 7:15 a.m. All of the neighborhood kids get off the school bus at 3:15 p.m., like clockwork. Except one. One boy gets off the bus at 1:30 p.m. everyday. Why does only one boy get off the bus at 1:30?

It's not a riddle. It's something that happens too frequently to students who have disabilities.

I received a phone call from a parent who explained how her son's IEP (Individualized Education Program) stipulates that he be dismissed early everyday. The IEP doesn't mention the actual time, but as it turns out, he is dismissed almost 2 hours earlier than regular dismissal time as a function of his behavior plan.

Her son has to earn staying in school, which is determined by his good behavior.

Know this please. Every student has the right to stay in school all day! Students who have a disability can not be held to a different standard from other students.

Let me help you look at this situation in a different way. Let's say there are 180 school days in a year and 7 hours in a school day. So, let's take 180 and multiply it by 2 (hours). That's 360 hours (of school) Let's divide that by 7 (the hours of a school day). That's about 51 school days. That's almost one third of the school year. Adds up, doesn't it!

This means that this student was denied the opportunity to be in school learning for one third of the school year.

While most situations may not be this extreme, no amount of lost school hours is O.K. In this particular situation, where the student's behavior is the culprit for early dismissal, it would be appropriate to ask the school district to conduct an FBA (Functional Behavior Assessment) to determine the function of the behaviors in question in order to put a BIP ( Behavior Intervention Plan) in place.

All students have the right to be set up for success at school. In this case, a really well-designed and implemented behavior plan is a good start.

And please know this. Earning the right to stay in school should never be a part of any behavior plan or IEP.

I'm Still Hearing the "R" Word

noreply@blogger.com (Julie Swanson) — Thu, 16 Aug 2012 01:01:00 +0000

At a Stamp Out the "R" Word rally

Everyonce in a while, a big screen movie comes along that uses a word that offends people who have disabilities. The most recent one I recall is The Descendents.

During that time, I was invited to attend a Stamp Out the "R" Word rally. That was several years ago and I really hoped that the national coverage of people who rallied against the use of "the word" would have convinced people to stop using it.

Well, here we are several years later and I'm still hearing it.

I hope people stop saying it, but in the meantime, remember one of my favorite quotes

by Eleanor Roosevelt:

"No one can make you feel inferior without your consent"

4th of July: A Time to Celebrate!

noreply@blogger.com (Julie Swanson) — Wed, 15 Aug 2012 20:01:00 +0000

My son at the fireworks!

This year was the best fourth of July fireworks. It's not that they were the most spectacular, they were the best because my son watched them from the front row. It's quite an accomplishment when you consider the love/hate relationship he's had with them since he was a little boy. He liked them from afar, but hated being too close.

So ever since then, we've been working on what I call fireworks desensitization.

At first, he was only able to tolerate them from a mile away with the windows closed. We eventually got the car closer and he would put the windows up and down as he could tolerate. In time, we moved to sitting on the grass a half mile away, but the car was parked in front of us so he could take refuge if he needed. This year, we were as close as they allow you to get. Sure, he plugged his ears once in a while, but he truly enjoyed every bit of it. He was so happy! I enjoyed the fireworks, but I was so happy to watch him and see how far we have come.

No One is Not Valid

noreply@blogger.com (Julie Swanson) — Wed, 15 Aug 2012 19:10:00 +0000

I snapped this photo because I couldn't believe my eyes

I'm going to be brief. There are many words we thankfully have abolished to describe people who have a disability. Invalid is one of them.

One meaning of the word is "not valid," another is "not well, weak, sickly." No matter which definition, I can't imagine anyone who would choose to be described by it. Or, be driven around in a van that screams it!

Think Twice at the Pump!

noreply@blogger.com (Julie Swanson) — Wed, 08 Aug 2012 03:57:00 +0000

I feel compelled to tell every woman (and man) about the front-row experience I had to a car jacking. As I had done hundreds of times before, I pulled up to get gas at the filling station. I pulled up about 5 feet to the car in front of me. A sweet looking, 60ish looking woman was pumping her gas. I also noticed a mid-age man leaning against the gas station building. I thought it was a bit odd, but it's not exactly against the law to look suspicious and be waiting for someone.

What happened next took place in a blink of an eye. The lady finished pumping her gas; she walked to the front door to get in. At the same time, the man dashed toward her, pushed her out of the way and jumped into her car, took her keys and sped off.

The poor woman didn't know what hit her. Thank goodness he didn't harm her!

I spent the next two hours with her and being interviewed by the police. I was fine, until I got home and the shock of it hit me. Then I started thinking "what if......?"

What if it had been me? Had I pulled in seconds before it would have been my car that was targeted. What if my son had been in the car? What would have I done? What would my son have done? What would the man have done to my son? Of course, my thoughts all went to the worst case scenario.

My son has an autism spectrum disorder and is essentially non-verbal. I don't believe he would have been able to know what to do or defend himself. O.K, so enough ruminating. Here's the take away:

When you pull into pump gas, look around and pay attention to the surroundings. If you see someone hanging around for no apparent purpose, be suspicious! Drive out and go to the next gas station if you have to think twice.

We Don't Do That in This District

noreply@blogger.com (Julie Swanson) — Mon, 06 Aug 2012 04:31:00 +0000

There are lot's of things I hear at IEP team meetings that cause me to bristle and take a deep breath. One of them is when I hear "We don't do that in this district."

It was recently said at a meeting in which we were discussing the possibility of a student requiring a residential program as part of an appropriate placement. The director said, "we've never paid for the residential portion of an educational program, we don't do that here."

As I usually do, I took a few deep breaths and contemplated my response to make sure I said something appropriate.

I explained that I was a uncomfortable with his response and I would be more than happy to ignore it. But, if he really meant it and wanted it on the record, than I would request for the district's position to be on the record. Loud and clear!

I explained that I was uncomfortable with it because he was predetermining what the IEP team was going to decide about the student's program. Additionally, it sounded like it was their policy not to do such things, and it wouldn't be appropriate for the district to have a policy about what they do and don't pay for as a part of a student's IEP.

He rethought his definitive statement about not paying for residential portions of educational placements and said he wanted to wait to see what the evaluators had to say about what the student needed.

I confirmed that I thought that was a great idea!

We Don't Hold IEP Team Meetings in the Summer

noreply@blogger.com (Julie Swanson) — Mon, 06 Aug 2012 03:29:00 +0000

Once again I find myself getting phone calls from parents who tell me their school district is telling them they can't have an IEP team meeting during the summer.

Is it more difficult to have an IEP team meeting in the summer if you are the school district? Yes. It means that they have to call in teachers, and perhaps other team members, who are not under contract to work during the summer. It means special arrangements have to be made to get them to come in for a meeting. It isn't exactly what the school district wants to do. So, more often than not (in my experience) it results in school districts telling parents they don't hold IEP team meetings over the summer.

This is where I tell parents to write an email that goes something like this:

Dear Director of Special Education,

I recently requested a IEP team meeting to be held in the summer. I was told that the district does not conduct IEP team meetings in the summer. If that is the case, would you please kindly provide me with the district's written policy which states that IEP team meetings are not held during the summer. I look forward to hearing from you.

Most sincerely,

What always happens next is that a follow up phone call or email reveals that there is no such policy.

Think about it, if it were a policy like that, it would essentially restrict a parents' to exercise their rights under the IDEA to 9 months out of the year - at least through IEP team meetings.

Once you've established that they don't have "such policy," ask them again - in writing - for an IEP team meeting. That is if they haven't already offered you one!

Don't Put All Your Stock in Hallway Conversations

noreply@blogger.com (Julie Swanson) — Mon, 06 Aug 2012 03:12:00 +0000

In my experience talking with parents who have special education concerns, it is disturbing for me to learn about misinformation often given to them in hallway conversations with teachers or other school staff.

Don't get me wrong. This is not about teachers or other school staff and placing blame on them. Most teachers are worth their weight in gold. But, ultimately most teachers are not experts on the IDEA (Individual with Disabilities Education Act) and your rights under this federal law.

Here's an example. I had a parent insist that he couldn't refer his child to special education because his child's teacher said that only teachers could make the referral. After I took a couple of deep breaths, I explained that the teacher's explanation was not entirely true. Teachers can make referrals to special education, and so can you! Please know that you, as a parent or guardian can refer your child to special education. The referral can trigger initial evaluations in all suspected areas of disability by your school team or other professionals.

In another example, a parent explained to me that the school speech and language pathologist reported to him that his son was going to be exited from special education at the next IEP team meeting because he was doing so well. O.K., I would consider that predetermining an outcome at it's best. So hold on right there, this type of decision can only be made in an IEP team meeting where many things are taken into consideration when exiting a child from special education.

So whether your child is not currently in special education or already receiving special education services, you would be well-served to request an IEP (Individualized Education Program) team meeting to discuss all of your questions and concerns.

So while it's tempting to put all your stock in what you've discussed casually in the hallway, don't

Commit Yourself to the Noble Struggle of Equal Rights

noreply@blogger.com (Julie Swanson) — Sat, 04 Aug 2012 16:40:00 +0000

U.S. Capitol

On a recent vacation to Washington D.C. I was awestruck by how big all of the National Buildings are. It's clear that our forefathers had big IDEAS for the future of our Country and wanted to make a big statement.

All the National Buildings are emblazoned with carvings of inspiring guiding principals. For a girl who loves her quotes, I was in my glory!

And then there are the Memorials.

I strolled upon this inspiring thought by Martin Luther King at the MLK Memorial:

"Make a career of Humanity. Commit yourself to the noble struggle for equal rights, you will make a greater person of yourself, a greater nation of your Country, and a finer world to live in."

While I am thankful for all of the inspiring guiding principals engraved throughout
D.C., this quote especially spoke to me.

I am committed to helping parents enforce their rights under the IDEA (Individuals with Disabilities Education Act). It isn't always easy. But standing their at the MLK Memorial taking it all in filled me with pride in the hope we are able to feel living in this Country.

I hope there is a day when I do not have to help parents enforce the IDEA. Wouldn't it be great for people to look back at MLK's quote one day and say, "can you believe there was a day when people had to struggle for equal rights?"

A girl can dream! In the meanwhile, I am thankful that I play a small role in the struggle for equal rights by working with parents to enforce their rights under the IDEA and Section 504 of the Rehabilitation Act.

It's Part of our Program

noreply@blogger.com (Julie Swanson) — Sat, 17 Dec 2011 23:04:00 +0000

It's Part of our Program

Perhaps your child is in a specific program within the school. As an example, a school district names a specific preschool program TBEIP - The Best Early Intervention Program. This program includes intensive special education, speech and langage, occupational therapy and behavioral intervention services.

One day you realize that your child's IEP does not include the behavioral support services. You ask for them to be documented in the IEP. This is where they explain that "those services are just part of our TBEIP program."

O.K., here's why that is not all right in my opinion.

It is the many peices that make the whole.

Your child's IEP should include all of the support services that he is receiving. And in the case where those behavioral services are not direct, individualized services to your child. Ask that the IEP include a description of the overall program, including all of the professionals who provide specific expertise.

1 in 20 Kids Have a Disability

noreply@blogger.com (Julie Swanson) — Sat, 26 Nov 2011 23:21:00 +0000

I can't tell you how many times I have searched and searched for a ballpark estimate of how many kids in the U.S. have a disability. Each time that I have, I have come up with several different answers that have left me in the outfield. So I've been forced to be vague about defining something that is important to me and the work that I do on behalf of families who live with disability. We are a statistsic driven-nation. It helps us put issues into perspective when we know how many people are affected by a certain circumstance. I've devoted my life to the issues that affect kids with disabilities, so I'm thankful for this new statistic:

Census: 1 In 20 Kids Have A Disability
By Michelle Diament

November 22, 2011 About 5 percent of school-age children in the United States have a
disability, according to a first-of-its-kind analysis from the U.S. Census
Bureau.

The statistic comes from a brief released this month offering an
in-depth look at kids ages 5 through 17 with disabilities who live in community
settings.

While the Census has long collected data on this group through its annual
American Community Survey, this year marks the first time that government
officials analyzed the results, said Matthew Brault, a Census statistician and
the author of the report.

We've Come a Long Way Baby!

noreply@blogger.com (Julie Swanson) — Mon, 29 Mar 2010 01:49:00 +0000

My son was diagnosed with autism a few years before the incidence of autism shot through the roof. In those early days of living with autism I felt so alone in my situation.

To give a little perspective here, how computers weren't standing operating procedure in the household like they are today. Therefore, I wasn't able to Google autism, which by the way, I knew almost nothing about other than I knew it wasn't a wonderful disability. I actually had to go down to my local library and look "autism" up in a set of encyclopedias from the 1950's. The entry in the encyclopedia said that people with autism were destined to live in instututions. I remember reading that the slapping the book closed with fright. Dont worry, I finally ended up getting a home computer and am truly greatful for the ease in which I am now able to inform myself of things.

Must A Child with "High Functioning Autism" Receive an IEP?

noreply@blogger.com (Julie Swanson) — Wed, 10 Mar 2010 17:38:00 +0000

As a special education advocate in Connecticut, I can't tell you how many times I have sat in IEP Team Meetings and heard this from the school district: "just because your doctor says he has autism doesn't mean he needs special education," "and besides, he's getting great grades in all of his academics."

To which I say: "yes, we know that. However, can we look beyond his grades and talk about the fact that he has no friends, sits in the lunch room alone, can't organize his homework, and is being harassed by other kids daily?"

This is what typically occurs when my client has "high functioning" autism. By the way, you need to know that I can not stand the term "high functioning;" I prefer to say "less affected" by autism. Unfortunately, that phrase hasn't caught on yet, so I'll say "high functioning," so you know what I mean.
This is where I turn to the Team and say, and here's what I want you to remember: "Education is not just about academics!"
Here is a great article from my friend and colleague Jennifer Laviano, a special education attorney practicing here in Connecticut.
So just remember, when you have your son or daughter evaluated to determine whether they have an autism spectrum disorder, make sure he or she is evaluated in all domains, not just academics. And, don't forget to keep the "I" (individualized) in IEP!!!!

Autism Doesn't Take a Summer Vacation

noreply@blogger.com (Julie Swanson) — Tue, 12 May 2009 12:26:00 +0000

The school year is drawing to a close and summer is around the corner. Summer brings fun thoughts, but it can bring also bring on a sense of dread for parents who have children with autism spectrum disorders and other disabilities: How many weeks will my daughter be in summer school? What our we going to do with all our downtime? How am I going to be able to program for her at home? How will my son have opportunities to socialize with peers?

These are some of the comments I routinely hear from parents who know the absense of the school year routine can throw their child for a loop - because autism and many other disabilities don't take a summer vacation.

As a special education advocate, I am in the midst of IEP (Individualized Education Plan) meeting season. I've gotten quite used to the fact that summer programming discussions prompted by the school district usually start like this, "our summer school runs for the month of July," or something along these lines. As well intentioned as these predetermined summer programs are, let me remind you that, if your child is eligible to extended year services (I'll get to eligibility in a moment), then your child's summer services can be individualized.

About eligibility for summer programming. It's not unusual to hear the IEP school team say that your child doesn't meet the criteria for summer school. It's also not unusal to hear school staff tell parents that they can only offer summer programming to those kids who can be proven to regress over the summer. Yes, regression is one of the criteria, it is not, however, the only criteria. I can't tell you how many parents I have worked with whose child has gone years without summer programming only to find out, once they learned about the full criteria, that they actually would have qualified.

If getting appropriate extended school year services is a concern for you, you would be well served to research your state's standards and policies about extended school year services. Call your state's department of special education and print out their standards and policies. This way, you will have the knowledge you need to have a well balanced discussion about whether your child meets the criteria or not.