Our family's experience with school, having a child with a disability (autism), given to undergraduate education majors at Edgewood College

2009-05-02T17:59:00.001-07:00

Hi.

I’m Gaylene Bennett.

My son, Elliot just turned 19.
He is a senior at West High School and he has autism.
He’s a year behind in school because we held him back one year before kindergarten.
We thought that was all he needed for his language delay.

I’d like first to show an essay.
This essay has been our philosophy with our son.
It has carried us through.

=================================================
---“Daring to Dream”

---by Les Reed

-----At the Alphabet Conference in January 1992, in a question to a presenter, a special education teacher voiced her perplexity over the dilemna of dealing with parents who are in a state of "denial" over their child's condition, with its consequent limits on what the child might be expected to achieve. How do we burst their "bubble," the teacher wanted to know. A parent in the audience replied that parents don't need their bubble burst; that without their hopes and dreams it would be hard to muster the psychic energy to get the child to the next therapy.
-----There is a danger that the term "denial" will come to serve a s a catchword whose purpose will be to dismiss the dreams of parents as unrealistic, when they may be merely challenging to the educator's (or administrator's, or therapist's) paradigm.
-----Denial is a phrase in the grief process as defined by Elizabeth Kubler Ross. All parents experience this as they work through the grief occasioned by the knowledge of their child's disability. But we move beyond our denial, instinctively realizing that self-delusion is counter-productive and will only hamper our ability to help our children in a meaningful way. If we did not accept that our children had develomental disabilities, we could hardly be effective as parents or as advocates for our children.
-----There is is a difference between non-acceptance of reality, and hope for a bright future. All parents have dreams for their children. A mother and father might hope that their child will become a great artist or a highly respected professional. The child may end up becoming a bricklayer, but in the final analysis the parents are satisfied if their bricklaying progeny is a decent, sef-sufficient and reasonably happy human being.
-----Parents of children with disabilities hope for no more or less for their children. We simply want out kids to fulfill their human potentialities within the limits that nature has imposed upon them. Indeed, nature imposes limits on us all, but it is up to us and not others to discover and define what those limits might be.
If parents' hopes prove over time to have been unrealistic, of if, for whatever reason the child falls short of fulfilling those hopes, the parents may experience disappointment. But far more tragic would be a potential unrealized because a child was not creatively challenged, or too little was expected, because parents and professionals failed to dream.

Reprinted from the ACA-CC Quarterly.

=========================================================
-----PP
-----T
-----Ther
Next, is something I never wanted:

I didn’t want to be so confrontational all the time with the schools.
Unfortunately, when you have a child with a disability,
you have to do a lot of advocating.
This torn up paper – I kept with me in my purse all the time.
It gave me validation.
It gave me strength for all the confronting I had to do for Elliot.

This group, Mothers from Hell was started in Eugene, Oregon.
They were a group of mothers of kids with disabilities
advocating all the time for their kids at school.
They found out that the school was calling them the mothers from hell.
So, they just accepted that name and started calling themselves that.

This sentiment is nationwide –
that parents who advocate for their kids in school
are considered mothers from hell by their school district.

I recently met two mothers of boys with autism from New Jersey.
I asked them if they were in the same school.
The one mother said that her friend was in purgatory and that she was in hell.

What is the reason for this?

I really don’t think the schools have the resources for these kids.

I believe strongly in public education.
I think teachers should make $90,000.

I think our society does not value children.
Therefore, does not value public education.

I think you get what you pay for and we do not fund public education well.

An article about teachers in The New York Times this morning said that:

“...one of every three new teachers leave the profession within five years.”

“Beginners are being driven away by low pay and frustrating working conditions.”

I think things are really bad but, like Obama – I think it’s an exciting time.
A time for great change.
And, in this case, where the child would come first.
There would be money, resources, passion and talent to make this happen.

Our struggles with the schools have been with inclusion and proper treatment/programming for Elliot.

We started in St. Louis.

The people there were great.
There is a strong sense of community and connectedness that we loved.
It was very difficult though, to break through the leaders of institutions
to get to this.

Elliot was not allowed in the cute, little hippie preschool.

He was not allowed at the cute, little family run swim camp
that all the neighbors went to.

He was not allowed at the special school for kids with learning disabilities.

He was not allowed at the special school for kids with behavioral disorders.

He was bused to a special building for kids with severe disabilities.

He missed his first 1/2 year of regular kindergarten until we could prove to the
principal that we knew that it was Elliot’s federal right to be included.

We finally got him included but, continued to struggle with keeping
him included and adequately training the aides –
He always required a full time aide due to his severe language delay.

Finally, in 3rd grade we moved to Madison.
To the north.
Where there is less prejudice and a better attitude about inclusion.

The first year in Madison, we had shopped around for a principal
who would allow me to be Elliot’s full time aide.
We were tired of aides who, in our opinion
were just providing pretty good babysitting for Elliot.
It seemed like a reasonable idea for me to be Elliot’s aide at school because:

I was available.

I was available at no cost to the school.

I was well trained in Elliot’s home program using Applied Behavioral Analysis.

I obviously knew Elliot well and could handle his behavior and
understand his very limited ability to communicate.

I was well trained in inclusion, having gone to many inclusion conferences.

And, I would love the experience with all the kids.

We did find a principal. She wanted to make it legitimate
so, she actually hired me as Elliot’s aide.

It was Elliot’s best year – we thought.
He was included meaningfully and learning.

But, later I’ll share with you something he wrote about not feeling smart
because, even though he was included,
he was also part of a special ed. program.

We had started a home ABA program with Elliot just before he turned 8.
We continued with this when we moved to Madison.
We were actually hoping that one of our therapists and I could take turns
being Elliot’s aide at school.

In 2nd grade, when we were still in St. Louis, we actually were able to have a home ABA therapist go to school with Elliot that year but, not me.

A child with autism’s programming/intervention is 24/7.
We felt strongly that Elliot’s home program should go to school with him.
And, having someone with Elliot at school who was knowledgeable of his home program would allow us to be consistent with our approach, what we were working on and how we were prompting him.

The next year, 4th grade, there was a new principal.
I anticipated that I might not be allowed to be Elliot’s aide again
so, I requested a teacher that I knew would not be
afraid to have mom in the classroom.

The principal chose a different teacher because
the special ed. teacher thought
the teacher I had requested would be too unorganized for Elliot.

So, the new 4th grade teacher was a very beautiful person
but, she did not feel comfortable with mom in the room.

The aide was a temporary aide who did not know Elliot.

Elliot has pretty good behavior but, can be provoked to
scream, hit himself on the head and bite his arm.

On the first day when I brought Elliot to school,
I asked the aide if he knew anything about autism.
He said “no”.

I asked him if he knew anything about ABA,
the treatment of choice we were using for Elliot.
He said “no”.

I asked him if he knew anything about PEC’s
(Picture Exchange Communication System) we were using for Elliot.
He said “no”.

I did bodily protest and I refused to leave the room.

The principal would still not change Elliot’s teacher.

Finally, the special ed. teacher, who had known Elliot for a year
acted as his aide until they hired a permanent aide and had her trained.

The special ed. teacher was obviously upset
because this took her away from all her other students.

My husband and I had to then go to conflict resolution with
the 4th grade teacher to mend our relationship.
She became more used to me and I was allowed to be
Elliot’s aide 1/2 day/week and his substitute aide.

This was the deal then for 4th grade and all of 5th grade.

We continued to struggle with the inadequate aide
so, we requested that the school district’s autism expert
come and train Elliot’s aide in ABA (again, the program
of choice we were using at home).

Things actually then became much worse.
I do micromanage.
The autism consultant was very territorial
and would no longer allow me to take Elliot’s
school program and data books home in the evenings after school.

When middle school came, there was a new school and a new principal.

So I, the mother from hell, again concerned that the school aide
would not be the best for Elliot asked:

Could I be his aide for free? They said “no”.

I asked if we could pay and one of our therapists from our home ABA program
be Elliot’s aide. They said “no”.

So, I asked if they could give us any one of their aides
and we would pay them to be trained and work
2 hours/week in our home program at our home.
They said “no” because the aide had child care issues.

Elliot then began to have seizures.
30% of kids with autism will develop a seizure disorder by adolescence.
Not only was I a good aide (I thought), I was also a pediatric nurse.

I asked again if I or one of our home therapists could be Elliot’s aide at school.
They said “no”.

So, we pulled Elliot out of school.

We got an attorney.

I was sure we could convince them that Elliot deserved a good aide
and we could help others.

We lost.

We came to a compromise.

Elliot would give up all his rights to a free and appropriate public education
because we would officially declare him a homeschooler.

He was allowed to take 3-4 classes.
I could go to school with him as his aide
or anyone of our choice with the principal’s approval.

School has been absolutely fantastic ever since.

I try to have cool, college kids, who work in our home,
go to school with Elliot. I also have our very talented Senior Therapist
from our home program go to school with El.

When they can’t make it, then I go.

Elliot (middle of photo,
in the black shirt and overalls)
in kindergarten

(click on picture for larger image)

Elliot (with the Illinois t-shirt)
in 1st Grade

(click on picture for larger image)

This is from a study on positive traits other kids recognize as “popular”.
I had gotten this at an inclusion conference.
It is used as a guideline for kids with disabilities to help them socially.

So, for us, we tried to work on Elliot saying “hi” to people.
I tried to dress him nice – like the other kids.

Something that is good for kids with autism are social schedules
or schedules of any sort.
(click on picture for larger image)

Schedules really decrease the kids’ anxiety if they can predict
what is going to happen next.

Elliot had a schedule on his desk in elementary school.
Now, he carries on in his pocket at school.
It even says stuff like “go say 'hi' to Cindy" – a secretary he really likes.

Elliot has calendars at home and a weekly planner, too.

We also always did “kid talks” with Elliot at the beginning of every school year.

They were very simple.

I mostly had the kids talk about their favorite things to do.

Then I would show pictures of things Elliot liked to do –
which were the same things that they liked to do.
My intention was to point out how much Elliot was like them.

Elliot with his dad and his sister Erin.

(click on picture for larger image)

Elliot and his dad at the computer
in their scuba gear.

(click on picture for larger image)

Elliot with his sisters Erin and Sami.

(click on picture for larger image)

Elliot and his dad

(click on picture for larger image)

Elliot and his sister, Erin holding their dad's hands
and jumping off a cliff (can't believe I let them do this)
(click on picture for larger image)

Elliot whitewater rafting with his
dad and sister Erin (all on right side of raft.
Erin in front, then El, in back Hal)
(click on picture fornlarger image)

I would have Elliot stand right next to me.
I didn’t want to do it behind his back.

I would have him read.

I would brag (respectfully – not that Elliot was better than them).

I would tell them that Elliot taught himself to read at age 2. He read letters.

At 3, he read words.

At 4, he would spell all day with magnetic letters:

the days of the week and months of the year,

“Mary Poppins”,

“A Walt Disney Production”,

“A Feature Presentation”.

At 6, he would spell the months of the year in Spanish.

(a few of these are not spelled exactly correct)

I would brag about this skill of Elliot’s because Temple Grandin,
a famous woman with autism
says “people respect talent”.
So, I did this to promote respect of people with autism.

Lastly, I would barely mention that it is hard for Elliot to talk
and it is called autism.

They can talk to him or have him read.
They can take his hand if it’s hard to get his attention.

The kids would always flock around Elliot after this talk.
They knew what to do.

I would always show a picture of him with his sisters
to show that he was part of a family just like them.

I’d like to read a short story that
Elliot’s oldest sister wrote when she was 9.
It sort of sums up Elliot at this time.
(click on picture for larger image)

Elliot( 2nd from left) at his
5th grade birthday party.

(click on picture for larger image)

In high school, Elliot was on the football team.

Elliot (#81, lower right corner) with his high school football team
(click on picture for larger image)

It was fantastic.

The guys were great.

The coaches were great.

They were not afraid of us.

In the halls, it would be the high school guys who would say “hi” to Elliot.

These big tough football guys would hold his hand.

A few treated him a little like a baby

but, most treated him equally

with great respect.

Elliot (#18) going in for a play - his coach to the left)

(click on picture for larger image)

---------------------

Elliot (3rd from left) and Chet (#7, 2nd from left)
told to look out for El (click on picture for larger image)

El (far left) and Chet looking out for El
(click on picture for larger image)

--------------------El (far left)

El (far left) and Chet with eyes on El and the play

(click on picture for larger image)

El (in the middle)
and Chet (far left)
still eyes on El
(click on picture for
larger image)

Elliot (kneeling, 2nd from left)
(click on picture for
larger image)

Elliot as a Senior (#81), named captain for the last game,
going out on the field with the other captains
at the beginning of the game.
(click on picture for larger image)

Elliot (lower right corner, in the white shirt
and black tie) for awhile playing with big tough
Tony's (right of El) hand and Tony is cool about it.
(click on picture for larger image)

Elliot (with the sunglasses) and
the blond guy right next to him, Josh
in a cross country meet.
(click on picture for larger image)

Josh is a student at UW.

He runs with El.

He reads to Elliot in our home.

For aides, you want two things.

You want the other kids to like the aide and want to be with the aide.

You also want, at times, for the aide to be invisible.
You want the aide to allow the kids to interact directly with Elliot.
I tell my aides they are like a movie director.
If needed, they prompt Elliot to interact
or they prompt the other kids to interact with Elliot.
Aide and fade.

Here’s a channel 27 news clip about Elliot
having autism and participating in 2 sports.

So, I think we did pretty good with inclusion.

Elliot did progress in his verbal expressions with our ABA program
but, we were actually wrong assuming
that he did not know language because he couldn’t verbally express.

Now, I want to show you a segment of “60 Minutes”
I saw 5 years ago.

60 Minutes on autism
Video sent by ir8chick

Segment on autism, featuring Tito, Dov, Soma, Jon and Portia.

Soma's book and the first of Tito's three books:

(click on picture for larger image)

We brought Elliot to Soma’s clinic in Austin, TX this last December.

We found out that Elliot is just like Tito.

He can point to letters and speak in complete sentences
using Soma’s Rapid Prompting Method.

Here are some excerpts from Elliot’s blog that we set up
to share with friends and family.

Elliot’s thoughts that he has now been able to express for the first time.

elliotbennett.blogspot.com

12/9/08

G said “What do you want me to do?”

E spelled “Read to me more.”

G said “Read what?”

E spelled “Anything.”

12/10/08

G said “What do you want me to stop doing?”

E spelled “I like everything you do.”

G said “What can we tell friends and family? Your conversations with Soma?”

E spelled “I don’t mind sharing.”

G zzz“Do you like being included at West, all the other schools? Was it good?
zzzzzzEmbarrassing?”

E zzz“OK.”

G zzz“Do you like Weight Training class?”

Ezzz “I like it.”

G zzz“Do you like Spanish class?”

E zzz“Not really.”

G zzz“Do you like Pottery?”

E zzz“Not really.”

G zzz“Do you like Team Sports?”

E zzz“Yes. Any sport is good.”

12/11/08

Gzzz “What do you think of Erin?”

E zzz“Kind and smart.”

G zzz“What do you think of Sami?”

E zzz“Smart and kind.”

G zzz“What do you think of Dad?”

E zzz“My best friend.”

G zzz“What do you think of Mom?”

E zzz“Best mom.”

G: zzz“What do you think of Matt the therapist?”

E zzz“Tries hard.”

Gzzz “Why do you video talk?”

Ezzz “Happens.”

G zzz“Why do you jump up and down and squeal.”

Ezzz “Stim.” (self stimulatory behavior)

Gzzz “This is personal. You don’t have to answer it. I respect that.
zzzzzBut, did you have a crush on Meera?”

E zz“What’s the use?”

Gzzz “What do you think of life?”

E zzz“Cool.”

G zzz“What do you think about autism?”

E zzz“Not so bad.”

Gzzz “What should I do when you video talk?”

Ezzz “Nothing. It relaxes me.”

Gzzz “Should I let you do it in a crowd, wherever we are?”

E zzz“Yes.”

Gzzz “I know I asked you why you touch my face and you said
zzzzztemperature. I was touching your face because I thought
zzzzzyou were sick. But, why do you touch my face-when you
zzzzztouch your face to my face, my cheek to your cheek and press?”

E zzz“Not sure”

G zzzShould I let you do it?

Ezzz “If you don’t mind.”

1/20/09

Elliot wrote the following story after I taught him about the war in Gaza and Soma taught him about the possibility of another ice age.

There was a war between two countries.
They were fighting over some small matter.
They never seemed to stop.
One day a meteor from space dropped on Earth.
These two countries were destroyed.
No one saw the big picture.

He also talked (spelled) to Soma:

I like the trees that don't have leaves. So pretty.

I usually like patterns.

Can I ask a question? Is it good to think about sad end of the earth?

Only the sad ends are real ends.

Yes, I find sad ends worrying.

We don't see big picture.

Is God cruel?

I don't like to think that big.

Video of Elliot with Soma:
At HALO's request, the following in on a private blog -- to view Elliot working with Soma, we need to give you access - send an email request to us at hgeesbennett@pol.net
Elliot with Soma

3/13/09

When I was nine I thought I was not smart
because my sisters did not go to
Special Ed programs like me.
I did badly in my IQ tests.
I knew my family loved me, but I was embarrassed
to be part of them.
Today I don’t believe in IQ tests.
It makes boys like me feel foolish.

Session 2:

Soma: z What do you want to talk about today?

El:zzzzz How about Spring Break?
zzzzzzzI hope Spring Break is rain-free.

Soma:zz Yeah, I think they said it would be better on Sunday.
zzzzzzzzzBut I don't know about at your place.

El: zzzzIt would be nice if we could all go to the beach.
zzzzzzzI am tired of cold weather.
zzzzzzzI want to escape to the sunshine.
zzzzzzzI love San Francisco.
zzzzzzzIt has a big ocean to watch.

Soma: z I used to go to the Bay area a lot
zzzzzzzzwhen I lived in California.

El: zzzzI don't mind parking problems.

Soma:z Oh, yes, San Francisco has parking problems.

El: zzzzMost of my time during Spring Break
zzzzzzcan be spent on painting.
zzzzzzI wish I were an artist.

Group Session:

Soma:zzzCody, what are we going to talk about?

Cody: zzzI am Cody. I like mysteries.

Hank:zzz I am Hank. I like bowling.

El: zzzzzI am Elliot. I like poetry.

Mason: z I am Mason. I like art.

Cody: zzzI like sculpture.

Hank: zz I wish I knew that.

El:zzzzzz Sometimes I like dancing.

Mason:zz Dancing is very interesting.

Cody:zzz Most of my time is spent in thinking.

Hank:zzz I am scared to think.

El: zzzzzI am not scared to think.

Mason: zzWhy are you scared to think?

Cody: zzz It is nice to know - tell us.

Hank:zzz It makes me stressed.

El: zzzzzI become stressed too, but not scared of it.

Mason: z I get stressed when I see others stressed.

Cody:zzz When I am stressed my eyes close.

Hank: zzz I begin to scream.

El: zzzzzI think you can try ipod.

Mason: z That's why I draw.

Cody: zzz What will you do for Spring Break?

Hank:zzzzHorse riding.

El: zzzzzI asked to take me to the beach.

Mason: z Probably skiing.

Cody: zzzYou can come to my house.

Hank:zzz Can you draw my face?

El: zzzzzI am sure he can.

Mason: z I can't make good eye contact, so faces are hard.

Cody: zzz It is funny. I don't make good eye contact too.

Hank: zzzNo one has ever drawn me.

El: zzzzzI will bring a camera next time.

Mason: z I like animals and I draw them.

Cody: zzzI wish you heard my animal story today.

Hank: zz I made some great stories.

El: zzzzzz I wish I lived here.

Mason: zzSee you a week after.

Elliot, his dad and sister Sami
(click on picture for larger image)

Elliot and his sisters, Sami and Erin
(click on picture for larger image)

I thought I might mention how Elliot’s educational experience
affected his sisters’.

We now were open to the idea of his sisters also partial homeschooling.

Here’s an article and book that we thought were
very interesting and thought provoking
about the benefits of homeschooling.
(click on picture for larger image)

Elliot’s sisters both mostly homeschooled
while always taking two classes in high school.

Elliot’s oldest sister is now in college.
She’s doing great.
She got into Berkeley
but, chose the University of California, San Diego
because it was warmer and had the beach and surfing.

She was a national merit scholar.
She scored perfect in language on the SAT and ACT.

I say this to prove that you can be
successful by partial homeschooling.

so, back to Elliot...

In closing,

from our experience,

the teachers who were our heroes

were those that were passionate about their subject

and, passionate about the kids.

The kids came first.

The teachers that we struggled with

were those that

it was about the job, the hours, them, not the kids.

It was about their ego.

They had to know everything.

They were threatened by us

and by our outside agency that provided us with our home program

that we wanted to carry over to school.

Our hero teachers were open.

They were not afraid

of ideas and the physical presence

of parents and outside agencies

in the classroom.

ADDENDUM: A note about treatment of choice for autism:

I now think ABA is outdated.
We no longer do ABA.
We do Soma® RPM (Rapid Prompting Method)

I do think RPM does utilize some of the principals of ABA such as:
using words like “prompting”, “fading” and “generalizing” but,
there is no “reward” given by the therapist for the correct response.

As Soma says, “learning is rewarding in itself”.

In ABA, Elliot did learn to get his mouth to say some words and also learned to get his body to follow commands.
In ABA, we thought we were teaching him language.
We were wrong.
Elliot already had language.
I think what we were teaching him by repetition, random rotation and reward
was really motor memory.
He already knew the words.
He just couldn’t get his body (mouth) to say the words or
get his body to do what he wanted it to do.

In RPM, by offering choices, academics are taught.
(It is actually more complicated than just offering choices.
See Soma’s book for more information about
underconnectivity in the brain with autism and
“open learning channels”.)
The child already has language.
Motor memory is developed first in
getting the hand to choose between two written choices.
Then, motor memory is developed to point and spell words.
Next, to write and type.
And finally, possibly to speak.

Soma® RPM has allowed Elliot to express who he is.

I was able to ask Elliot (4/14/09) how was it doing ABA all those years –
a waste of time? kind of degrading?
He responded “No, it was OK. We knew no better.”

And, I was able to ask Elliot (4/14/09) about what would be the ideal
school for him, about mom as the aide and how he felt about the
channel 27 sports news about him:

Gzzz What would be ideal for you – or kids like you. Homeschool?
zzzzzA school with just Soma and students like you?
zzzzzBeing in your neighborhood school with all different kinds of
zzzzzkids? Some combination?

E zzzI don’t know but, I learn best with few children.

Gzzz Clarify or talk more about Mom going to school with you.
zzzzzI think you would really like to go independently but,
zzzzzif you need someone with you, has it been OK that I go to
zzzzzschool with you or embarrassing?

E zzzIt is not a good idea you coming because I am big.

G zzz How is it with Matt? (our Sr. therapist from our old ABA
zzzzzzprogram who is excellent at inclusion)

E zzz It is better.

G zzz How about with Josh Estep? (one of our many dear college
zzzzz students who runs with Elliot at track and reads to Elliot in
zzzzzour home)

E zzzNot a bad idea.

G zzz How about Amanda?

E zzzCould it be a man?

G zzzIf I can’t get Josh or Matt to go more to school with you or,
zzzzzif they are sick, do you want to stay home or do you want
zzzzzme to go to school with you?

E zzzOK. You can come but, try to look professional and
zzzznot mom.

Gzzz Can you give me an example?

E zzzDon’t be emotional.

Gzzz Can you give me an example when I was emotional?
zzzzzI don’t want to dwell too much into this but,
zzzzzI really want to understand so I can do it right.

E zzz If I am trying to be a student, treat me like one.
zzzzNot a son.

Gzzz What did you think of the channel 27 sports news about you?
zzzzzGood, OK or embarrassing?

E zzzIt did not matter. I am not a media person.

Final note:

There was a lot of flexibility built into our programming for Elliot.
We tried to provide effective intervention/education and
allow him to have a life.

References:

“Report Envisions Shortage of Teachers as Retirements Escalate”,
by Sam Dillon, The New York Times, April 7, 2009.

halo-soma.org

"The Six Lesson School Teacher" by John Taylor Gatto (google this)

G's talk at Edgewood College 4/7/09

Our family's experience with school, having a child with a disability (autism), given to undergraduate education majors at Edgewood College