love and marriage (and asperger’s) · love and marriage 3 aspie x factor — clay marzo 6 mom’s...

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Inside this issue:

A note from the editor 2

Love and Marriage 3

Aspie X Factor — Clay Marzo 6

Mom’s the word (Pam) 10

Tips from the vaults— Family! 12

A little inspiration - School 14

Skills Focus — Theory of Mind 15

About a boy (Alex) 22

Grandma Knows Best (Tess) Stof- 24

Jermaine’s Story (Jacqui) 29

Magic & Wonder (Dylan) 31

Weird but true . . . 32

The Advocate (Mo) 33

Letters to the editor 35

And finally . . . 36

www.aspirationsnewsletter.com

“Love and marriage, love and marriage,

Go together like a horse

and carriage. This I tell ya, brother, you

can't have one without the other.”

Frank Sinatra (1955) Now Ole Blue Eyes had a very romantic take on the

world.

But what if one or both of the people have Asperger’s?

Does this make a difference?

All parents worry about the

future.

And the whole question of future relationships and marriage plays a key role in

these anxieties. Will my son/daughter spend

a life alone?

Will they ever find true love? Will they ever get married?

The good news is that of

c o u r s e p e o p l e w i t h Asperger’s can have long term relationships and even

get married. There are many people with

Asperger’s that have found the one person that is

capable of loving them for exactly who they are.

Some people with Asperger’s have married others with Asperger’s some have

married neurotypicals.

In fact in most relationships, A s p e r g e r ’ s o r n o t , communication is a guessing

game.

We want our partner to know from our body language or mood we need a

hug after a bad day at work.

It is expected our partner

wil l bring us home

something special after a

p r o m o t i o n o r o t h e r

important life event.

But if you have Asperger’s these types of things are not visible and must be

discussed frankly.

And to put it in context this is the case with many, maybe most, neurotypical

relationships too. I’ve been married 10 years

yet still get this wrong more than I get it right.

And I am a person who “supposedly” knows the

social rules and so should be getting 100% - in theory!

(Continued on page 3 . . .)

Love and marriage (and Asperger’s)

Volume 1

http://www.aspirationsnewsletter.com

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Hi there,

Just back from a camping

trip in the New Forest, Hampshire.

I go with some mates every year, and we take our kids.

We call it “Dad’s Army” camping in vague homage to

the classic UK comedy show of the 1970’s (below):

Highl ights this year

included: * Watching the local wild

ponies “snatch and grab” p i c n i c s f r o m p o o r unsuspecting campers.

* My 4 year old (Phoebe)

successfully locking herself in the shower cubicles!

“I’m OK dad I’m a big girl, you wait outside . . .” 2 minutes later - floods of tears and dad to the rescue

- picking the lock with the

end of my belt buckle!

* The bizarre and quite

frankly puzzling phenomena that is camp site washing up and kids!

Ask my kids to move a toy back to the box at home -

you think I’d asked them to clean the whole house - the

way they react. But give them a bowl of

greasy plates - free reign on the washing up liquid - and

they are keen as mustard! Anyway a fun filled time all

round - and the dad’s even made time for a beer (or two) once the darling cherubs

were tucked up asleep!

So I’m finishing up this newsletter now we’re back on home soil - so to speak.

This month I’ve written a b o u t l o n g t e r m

relationships and marriage for people with Asperger’s.

And I’ve just come across a great website I’ll share in a

future email. But wanted to give you the scope on it now.

David Finch is a published author who was diagnosed

with Asperger’s 5 years after

he got married.

He has written a well

acclaimed book of his experiences - which I’ve yet to read - but is on my

Amazon Wish List! “The Journal of Best Practices: A Memoir of M a r r i a g e , A s p e r g e r Syndrome, and One Man's Quest to Be a Better Husband” Read more about his story :

www.davidfinchwriter.com/

Well that’s all for now except I hope you are having a good summer break. And if you

haven’t got the bonus “Summer Holidays” report

just drop me an email.

A note from the editor (aka Dave’s talk!)


http://davidfinchwriter.com/

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important for those who are

neurotypical because they may have not had any

previous exposure to someone with Asperger’s.

2. Continued education of

what Asperger’s is all about.

We all know that there is

continuing research into Aspe r ge r ' s and tha t something could change at

any time.

If one of the people in the

relationship is neurotypical,

then they will need to learn

all about Asperger’s.

This needs to be an

important part of the

relationship.

3. Understand that therapy could be a continued part

of your relationship.

Normal marriage therapy will not work for couples were

one partner has Asperger’s.

It is also important to look at

this therapy as ways to help improve your relationship.

However, both parties have to be willing to want the therapy to be successful.

4. Keeping an open mind to poss ib le re lat ionship

alternatives is another way for Asperger’s relationships to work.

I have read many different

articles about Asperger’s and marriage.

There were couples that both had Asperger’s, couple’s with

one on the spectrum, or even couples that started with one

on the spectrum to end with both on the spectrum because of a late diagnosis.

Even though all these couples had their share of issues they

seemed to genuinely want to be together.

One story in particular really caught my attention because

they were in their late 60’s.

Because they shared their

love for one another, they

decided to live in separate

homes but stay married.

However for people with

Asperger’s such social and relationship etiquette

must be laid out fair and square.

Here’s 4 important things for making a relationship work with 1 or more

p e o p l e w h o h a v e Asperger’s

1. Desire to learn about the world that the other person has lived in their

whole life.

Sometimes it could be two people with Asperger’s

explaining to one another about what their life has been like to this point.

A great quote by Dr.

Stephen Shore really s u m s t h i s u p :

“if you've met one person with Aspergers, you've met one person with Aspergers.”

No two people are the same – regardless of diagnosis – so it’s

essential to take the time.

Other times it could be about a person with A spe r g e r ’ s an d a

neurotypical person sharing their life stories.

This is particularly

Love and Marriage (and Asperger’s) (continued from page 1)


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These types of relationship

where one person lives here and the other person lives in

another place might not work out for everyone; but it is an option.

Another couple that I read about talked about their

work with other people that had Asperger’s.

They felt that by sharing their stories with others they

could be successful.

She did see a therapist who gave her advice, but he was still relying on his devices.

But they were developing coping skills.

She would place her hand on

his leg to let him know that she wanted him to hug her.

They spoke frankly about physical contact because of his sensitivity issues.

It was their desire to be

together that leads them to find ways to cope with one another.

5. Listen without judging.

No one wants to be judged harshly by someone they

care about dearly. A relationship will survive

based on both people’s ability

to do this.

The importance of being able to talk openly and honestly about your feelings, is

something which needs to be explicit all round.

It can be too easy for a NT or Asperger’s partner to judge

and jump to conclusions – so they need to be mindful.

Equally pretending to be happy when you are not or

pretending to be fine with something that you are not is not a good idea.

So open and clear dialogue is

to be encouraged across the

board – which is another

principal just as applicable to

anyone in life.

6. Appreciate what the other person has to offer.

Everyone brings something

special to a relationship or marriage.

It may be the very thing that brought two people together

in the first place.

Whilst people with Asperger’s

may struggle with the

spontaneous – flower petals

strewn on the floor – romantic

side of things . . .

She bought a house down

the street where she could entertain family and

friends. He stayed in their original

house in his solitude. Then every evening he

would come to her house for dinner and time

together then go home after they were done spending time together.

To some of us this might

seem strange, but it was an arrangement that worked for them.

In fact another article I read talked about a

couple that were dating where he lived in a

completely different town. They get together for

weekends, holidays, and other special occasions

then he goes back to his job and home in a town 50 miles away.

And yes, this was working for them.

Love and Marriage (and Asperger’s)


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It does take work but

relationships can definitely work out for people with

Asperger’s. Many people with Asperger’s

marry and go on to have very successful and fulfilling relationships.

These marriages often look

like typical marriages. They have careers, purchase

homes, take vacation trips, a n d h a v e i n t i m a t e

connections. And yes, many have children.

Which is a whole new topic for another day.

Support is needed when

adults with Asperger’s marry. Encouragement from family

members, as well as medical and emotional support, will

increase the chances of a

h e a l t h y , l o n g - t e r m relationship for a young

couple living with Aspergers Syndrome.

For inspiration I’ve shared a real nice short video of an Autism Love Story featuring 2

young people with high f u n c t i o n i n g a u t i s m :

www.parentingaspergerscommunity.com/public/1824.cfm

Also 2 short pdf resources for

you to download for further

reading at:

www.parentingaspergerscom

munity.com/public/1825.cfm

They can be helped to

understand this in more concrete ways

e.g. the importance of sharing a nice meal

together. Or occasionally surprising

your partner with a gift THEY will like.

And on the flip side of spontaneity.

People with Asperger’s tend

to be very loyal and dependable.

Which is exactly the kind of trait that is perfect for a long term, healthy marriage

or relationship.

7. A strong commitment

and desire for the relationship to work.

If one person gives up on the relationship, the future

of the relationship is doomed.

It’s important to remember that hard times exist in

every relationship. The way they handle the

problems determines if the relationship can survive.

When this situation arises – most of the earlier points

need to come into play even more.


http://www.parentingaspergerscommunity.com/public/1824.cfm




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Jill Marzo – Mom to Clay Marzo – Champion Surfer

who has Asperger’s

(http://claymarzo.com/clay-aspergers-syndrome/)

As you can see Clay’s is an oh so familiar story.

His mom didn’t really

understand a lot of his behaviors at first, but they eventually made sense when

he was diagnosed with Asperger’s.

School too was a nightmare.

3 different schools . . . home schooling, yet nothing really worked.

Yet like so many kids with

Asperger’s there was1 thing . . . One thing which made him

happy, calm, relaxed and

gave him a real sense of

being.

SURFING! And Clay’s story to the top of

the surfing circuit is amazing. It started with Clay following

in older brother Cheyne’s footsteps on the ocean swells

of Maui, Hawaii. Cheyne was a good young

surfer and Clay would watch for hours from the beach,

whilst collecting sea shells. Cheyne himself is a pro surfer

who rides for the Body Glove company.

Clay was a very keen observer and was soon mirroring

Cheyne’s style very closely.

“You can only imagine the difficulty in not knowing about the connection b e t we e n C l a y a n d Asperger’s Syndrome for all these years… The only thing I knew was that Clay was happy in the water and struggled for air out of it… Growing up, school was a constant struggle, I tried repeatedly and desperately to figure out what was going on with him. In the end, I took him out of 3 schools, tried home schooling and yet nothing was a good fit. Luckily, I knew enough to keep him in the water. I could sense it as a mom. In the water he was calm, connected and engaged … at ease….”

Pro Surfer - Clay

Marzo


http://claymarzo.com/clay-aspergers-syndrome/

http://claymarzo.com/clay-aspergers-syndrome/

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thousands of surfing fans across the globe.

And his own story “Just Add water” was released as a film

in 2009.

It combines some of his

amazing surfing footage with honest debate about his difficulties in the pro surf

world due to Asperger’s. The film even won the

prestigious Sundance Film Festival.

However out of the water it’s been a different story…

As a professional surfer Clay

has to attend parties, meet people and do media interviews.

He has always found this incredibly challenging – often

feeling sick and confused at g r o u p d i n n e r s , a n d

awkwardly rushing past

waiting fans.

His mum had to cover for him a lot at different sponsorship and corporate events:

“I was constantly trying to

cover up why Clay was not making eye contact or shaking the right person’s hand.” He was courted by Rolling Stone, the New York Times

and more.

Everyone wanted his time. The busier and more hectic it

got; the worse it was for Clay.

It reached a peak . . . He lost at the World Junior’s

competition in 2005 – from a position where he should have won.

He began to not turn up for

crucial events. Clay began to gain a

reputation in the surfing world of being weird, arrogant and stand offish.

Luckily Clay’s team manager

at Quicksilver (Strider Wasilewski) could see his reputation was unfair.

Commenting at the time

Strider said: “I knew this kid wasn’t stoned or stupid . . .

At the tender age of 10 Clay won his state

swimming championship and at 11 he was signed up for his surfing skills by

t h e p r e s t i g i o u s Quicksilver team.

His coach Str ider Wasilewski was stunned

and said of Clay’s early years:

“Some of what he did was mind-blowing at any age. It was like someone had sent me the instructions to create the first nuclear bomb. I knew I'd received a package that would change the face of surfing." (ht tp ://espn.go.com/act ion/surf ing/news/story?id=4437460)

Since then Clay’s won

countless awards and competitions including the NSAA men’s title in

2005

(which is THE BIG ONE for amateur surfers in the USA), and is on the Pro

circuit. He also starred in several

movies:

Quick Silver’s Young Gun M o v i e s - s e e n b y


http://espn.go.com/action/surfing/news/story?id=4437460



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Issues with theory of mind

For example on his website it

says that “Clay believes everybody to a fault… does not understand the way we all think…” Food

Pretty rigid and inflexible. His mum commented:

“I remember during the Olympics, seeing about Michael Phelps that he would go into this one restaurant and order the same thing over and over, and I remember thinking, “Gosh, that’s Clay. He’s exactly like that. He’ll go to the same two or three places and order

precisely the same food every time. And it’s a lot of food, we’re talking four plate lunches. He once ate a whole box of twelve Krispy Kremes. Twelve.” (www.surfingmagazine.com/

today-we-like/today-we-like-the-clay-marzo-diet/) School problems

He struggled to sit still, understand instructions or comprehend what he read.

Obsessions

As well as water and surfing.

Clay would obsess over seashells or baseball cards on his own for hours.

Sensitivity

Clay really found sound and touch tough.

He would dash from the dinner table half way

through, and retire to his room in the excitement of

Christmas day. Routine

Clay got easily upset when his routine changed.

Especially if it meant he couldn’t surf.

He wasn’t a spoiled teenager who didn’t want to be there. I could see him freaking out inside. He was in pain.”

So Wasilewski found an online test for Asperger’s

and he found it fit Clay’s behaviors like a hand in a velvet glove.

Clay displayed things like:

Stimming

On the trailer for “Just Add Water” he is shown to stim by constantly

rubbing his hands when anxious.


http://www.surfingmagazine.com/today-we-like/today-we-like-the-clay-marzo-diet/



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Dane Reynolds (another big

name pro) said “the last time I got jealous

was when I watched clay surf “

He has been described as being to surfing; what Mozart

is to music.

Whilst some people may prosper “despite” of their Asperger ’s , C lay has

prospered because of it.

The super intense focus of his Asperger’s means Clay has surfing abilities that few

can rival. Recent times have been up and down though . . .

2010 he got 2 back to back knee injuries.

He couldn’t surf. He was SO lost without the

one thing in life which he loved and kept him

grounded. The injuries also coincided

with business problems across the surf industry at

the time. So Clay was dropped by

Quicksilver.

He and his family were

devastated.

But he’d be back . . .

In next month’s edition I’ll

share with you his come

back and current life story.

I’ll also reveal the 4 lessons

we can learn from

Asperger’s Surfing Superstar

Clay Marzo.

To surfing success,

A f t e r s o m e i n i t i a l

reluctance; Clay’s parents agreed for a formal

assessment. In December 2007 (aged

18) Clay was diagnosed with Asperger’s (and traits of ADD and OCD).

The diagnosis came as a

huge relief and helped Clay, his family and the surfing c o m m u n i t y b e t t e r

understand why he is the way he is.

Through regular therapy sessions on social skills

and anxiety Clay learned to manage much better out of the water.

And on the water… With his blond hair, muscular tanned body and

Hawaiian shorts … he’s always been every inch the surfing pin up!

And he’s been described as

the most naturally gifted surfer of his generation.

Clay continues to revered by his fellow pros due to

his unique and innovative approaches to surfing.

US Top Pro Surfer Kelly Slater calls him “one of the best surfers

in the world”


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Help! I Want Off This Roller-Coaster! Clickety-clack, clickety-

clack the excitement grows as the roller-coaster begins

the climb towards the first hill.

I begin to see the crest of the hill and feel the quivering in my heart as it

beats faster.

This is going to be a thrilling ride that is sure to leave me smiling for days.

Then suddenly . . .

WHOOSH!

We’re back at the bottom of the hill.

And the long slow climb back up the hill begins

again. What I have just described

mimics daily life with a child who has ASD.

The roller-coaster of life for

the parent of a child with ASD can be challenging and

the anticipation, gripping.

You spend countless hours constructing a plan to

provide your child with the best opportunity for success.

You speak with teachers, tutors, psychologists, family,

friends and anyone else that may be able to lend a helping hand.

You set up systems for daily

routines, events to come and everyday reminders.

Y o u u s e n u m e r o u s organizational techniques; notes taped on mirrors,

doors used as post-it hot spots and dry erase boards

continually updated.

All of this takes hours of planning, research and

clarification, which all too often results in having to start over at square one.

Much like the roller-coaster

climbing towards that first big hill, you gain confidence

as you go. You think to yourself,

“OK, I’ve got this. How bad can it be? “ You smile as you settle in

and enjoy the ride. And for a while things go

well . . .

Much like the anticipation of that first hill of the roller-coaster, you’re cursing and

enjoying the view all at the same time.


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Sitting in the roller-coaster

at the top of the hill, you can see the whole park.

It’s an awesome feeling and a fabulous view!

Then, AHHHH!

You begin to drop, and boy is it fast!!

Suddenly notes aren’t being read, c lo thes aren ’ t

changed, and grades begin to drop.

Before you know it, you are the bottom of the hill again,

and the slow clickety-clack climb begins once more.

This has been our life for the past seventeen years.

Sometimes I just want to get off the ride!

I get angry, depressed and every other feeling in

between.

I cry, yell and (my kids favorite) lecture.

There are some days that I wish I had the problems my

friends have. Their kids are worried about

early acceptance into college.

Ha!

We don’t even receive junk

mail from colleges.

I wish I could worry about my son getting through his AP class in order to gain

another college credit. Ha! I say again.

Unfortunately, I still need to

check my son’s grades each day to be sure assignments are being turned in on time.

When assignments are not

turned in, I once again have to reach out to his teachers to explain that “my son is

not being lazy” or “just a teenager”.

I am not a “helicopter” parent demanding special

treatment for my son, I am a frontal lobe manager.

(For those not in the know a helicopter parent is a parent who pays extremely close

attention to their child particularly in school.

First coined in the 1969

bestselling book “Between Parent & Teenager” by Dr.

Ha im G ino t t , wh i ch mentions a teen who complains: "Mother hovers over me like a helicopter...")

I realize that all parents face

challenges with each child

they raise.

I also realize that my

challenges may not be as

arduous or as exhausting as

others.

Parenting is a struggle.

Some days I think to myself

“I no longer want to be on

this roller coaster of life with

an ASD child”.

Then I look at that young

m a n w h o m I l o v e

unconditionally.

I see how far we have come,

as mother and son, and

friends who understand

each other and accept each

other for whom we are.

It is at that moment that I

pause and say,

“Get me another

ticket! I’m ready to

ride again!”


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Tips From The Parenting asperger’s community VAULT

Mom’s Question Recently I found out one of my family members had been questioning my son about things that I was saying or doing in our home.

A lot of the issues are due to the lack of my families knowledge of our (my son and I)

day to day life. They only spend a few hours now and then with my son.

Plus, if my family does take my son to go do something and he starts to have issues they bring him right home. They say they just couldn't deal with it.

One really big issue I'm having with my family right now is I do not work full time

anywhere. My family can not understand that.

In the past when I was working and had to miss work - if I'd call and ask my parents, who are retired, if they would keep him I would get a bunch of excuses. It was honestly like I was making up that my son was sick; so I gave calling.

Now my family is giving me a hard time about not having a job; but I'm afraid that I'm not going to have the support I need if and when my son gets sick.

Plus there are just days things have been so overwhelming for our Aspie's they just need to defuse. This is not something my parents or other siblings understand.

They say that is nothing wrong with him send him to school. Then he goes to school

only to get in trouble and I get called at work by the school to come in.

Today I stopped by to see my parents and my mom said something to me about not understanding why I don't want to work. That cut me deep! I do not mind working

but honestly I'm scared to go back to work full time at a regular 9 to 5 job. Help!

Response 1 First and foremost… You need to do what you know is RIGHT for you and

your son.

YOU are his main care giver, YOU are the one that understand him and takes care of him. So you need to carry on whatever it is that you are doing which best meets his needs - and

I am afraid any other family/friends (who sound like they are "about as much use as a chocolate teapot"! when it comes to helping you) need to pipe down!

I feel I know you quite well know and I know it must be hard to cope with sniping comments from family/friends - but you are doing the right thing; so carry on doing so.


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Response 2 Wow! How familiar does all of this sound? Can't deal with him so bring him home, better off not to take him out at all; yet these same people cannot

understand the stress that you (all Aspie/Autism parents) are put under day AFTER day - not for just a few hours 'now and then.'

They expect you to work full time but will not help you out in time of need. Sad It's

not as if you had been asking every day, or week even.

Can you get respite carers for your son for after school? I know having private carers can be expensive so that may not be an option. As I don't know which country you live in I can only mention a few things I am aware of here in Australia.

Centrelink -(Government dept)- provides either a Carer's Allowance (not heaps, but it

helps) or Carer's Payment depending on the amount of day to day care/supervision a child/adult with a disability requires. It usually requires a yearly review. Carer's

Payment is usually for someone (generally family) who has to forgo employment to care full time for the disabled person.

Some people with disabilities have carer's from the Red Cross. I daresay there would be some cost involved but one would hope not too much.

It's not much but I hope this is of some help Becky. Some days are a real 'bugger'

but we get through them, then we take a deep breath and start over again.

You ARE doing the right thing by your son, YOU are his greatest advocate; we love our boys even on a bad day!

Response 3 I too have been handling negative feedback from family and people just don't

understand what we deal with on a daily basis. You have to rise above it and not let it get to you.

It is very hard but try to not let it get to you they are not living your life. Suggest if they want you to get a job that they could take your son after school this should shut them up!

Otherwise speak out and stand up for yourself. Get angry and say what you feel. People will take advantage if you let them. Especially mothers! I did this and it helped.

On the work front I work part time and this works. As I speak my Aspie daughter is

having a respite day as she had a bad day yesterday and I know this will help her cope better tomorrow when i have to go back to work.

But at least I have two days a week to run around for her and allow her to stay home if needed. Can you get part time employment?


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Wouldn’t it be great if a

school REALLY catered for

kids with Asperger’s.

If they gave the students:

* Lessons in real life skills

like cooking, laundry and

making the bed.

* Visual aids to learn

lessons and get a better

understanding of all kinds

of class situation.

* Melt down prevention

rooms which offer a calm,

large peace for children to

de-stress.

* Yoga techniques and

worry stones to hold in

class - to help even avoid

melt downs.

Well such a school actually

exists!

The school is based in

Gilbert, Arizona and

opened it’s doors this year.

It’s run by the Pieceful

Solutions charter.

It’s designed specifically for

kids with Asperger’s and they

get the “normal” high school

stuff too like:

* English, math, reading,

social studies, science,

Spanish and art.

* P r o m n i g h t a n d

Homecoming

* Basketball team

It was the brain child of a

former special education

teacher Kami Cothrun.

She had a dream to build a

school for children with ASD

around 6 years ago.

And now her dream’s come

true!

And this school actually seem

to have a vision and mission

statement you can believe:

Support for every student

and their family

Opportunities for all

students to enhance their

lives

L a n g u a g e e n r i c h e d

curriculums

Unique programs based on

specific needs

Therapeutic strategies

including sensory, fine

motor, music, language, and

play

Independent learning to

promote independent living

Open communica t ion

among school, therapists

and parents

Nurturing environment with

skilled, trained and loving

staff

Social skills training using

innovative techniques

For more details see their

website:

www.piecefulsolutionscharte

r.org/


http://www.piecefulsolutionscharter.org/

http://www.piecefulsolutionscharter.org/

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“Theory of Mind or TOM means the ability to

recognize and understand thoughts, beliefs, desires,

and intentions of other people in order to make sense of their behavior

and predict what they are going to do next”.

(Tony Attwood).

He is saying to us that a child with Asperger’s has a

hard time knowing what other people are thinking

and feeling; and then deciding what that person will do next.

Nowhere in that definition does he say that a person

with Asperger’s does not have feelings or capable of

expressing empathy. Dr. Attwood goes on to say

that TOM is affected by the inability of a person with Asperger’s to observe body

language of another person. experts would say is a

classic example of how children with Asperger’s have a limited TOM.

How do we measure for TOM?

Sally Anne Test and Other

Psychological Assessments

In 1983 Baron and Cohen

developed what is known as the “Sally Anne Test.”

In the original test the person giving the test would

present to someone the following scenario using two dolls:

“The first doll is named Sally and she has a basket. The second doll is named Anne

and she has a box. Sally puts an item, such as a

ball or other object, in her basket than leaves to take a walk. While Sally is gone, Anne takes the item out of the basket and puts it in her box. Sally comes back and wants her item.

Skills focus — Theory of Mind


16


The person giving the test

than asked their test subject:

Where will Sally look for the item? Where is the item really? Where was the item in the beginning? In order to pass this test, the child has to be able to

put itself in the shoes of Sally.

Sally doesn’t know that the ball has been replaced and

so the correct response for the test will have to be:

Sally will search for the ball in the basket.

Children with Asperger’s generally will mostly say:

Sally will find the ball in the box because that is where it

is!

Because of this they are said to fail this test.

By failing this test they are instantly said to have

problems with TOM. This test was redone in

1998 to be done with actual humans instead of dolls.

Other assessments have been designed to determine

what level of TOM the

different ages of individuals

on the spectrum might possess.

They have taken the quest ioning somewhat

further by addressing the issue of where the person’s answers are coming from.

Is the child or adult

answering from memory, intellectual analysis, or rote learning; as compared to a

spontaneous answer?

The fact is no matter how a test is written or designed, everyone already knows that

children or adults on the spectrum struggle to perceive the outside world.

All of these professionals

know that someone with Asperger’s is a keen observer of their environment, but not

of the actual persons in their environment.

This brings up my next

point:

TOM from an Asperger’s point of view

In one article that I read

about TOM was written by a young woman that has Asperger’s.

She talks about how the

Sally Anne test is extremely “unreliable.”

She gives several different reasons for the test being

unreliable: a. Test was created by a

“neuro-typical” individual I know that you’ve all heard

the saying,

“Great minds think alike.” Well, that is exactly what

this young woman is saying about this test.


17


It is easier for a person with

a neuro-typical mind to relate to another person

with a neuro-typical mind. Therefore how can they

know how someone with Asperger’s is going to answer?

Did they ask someone with

Asperger’s or autism to help them create the test?

The fact is there could be any combination of answers

to the questions, because every single person thinks differently.

There is no way that every answer is going to be exactly

the same every single time.

For example: A detail oriented child

describes exactly what Sally will do when she returns.

How is that going to be categorized?

Is this child going to be penalized because they went

into too many details?

Will they pass the test? Or you could have a child

on the opposite side that is bored and does not care about the test.

They simply make up

answers to the questions

because they did not listen

to the story.

Are they going to be considered to have impaired TOM?

b. No factors taken into consideration

Everyone that knows

anything about Asperger’s or autism knows that there are a wide variety of sensory

issues that can affect daily living.

From how they see things, to hearing the words someone

is saying, or even see what is being shown to them.

Were there any distracting elements present in the test

room?

What about someone with

Asperger’s being able to complete tasks as long as they are giving in written

instruction form? How did the test giver

present the test to the person taking the test?

c. Failing is based on one

conclusion

Pass or fail. I understand that there are many things in life that are considered

pass or fail; but this is not one of those things.

Is it fair to label someone as having limited TOM because

they did not answer one question correctly?

There is too much pressure being weighed on answers

that can change by too many unmeasured factors.

How can the test be fair? That is what this young

woman wanted to know.

She suggested that we look at it as a different way of processing information; and

not as having a limited TOM. Debate on TOM

If you’ve ever read any

articles or books from the perspective of someone with Asperger’s then you’ll

understand how TOM could cause some problems.

I’ve even read articles from non-verbal individuals on

the spectrum that say their feelings are just as valid as anyone else’s.


18


In fact some would say that

they have more feelings that “neuro-typical” people.

One book I read was written by a women who grew up

with Asperger’s, but never really knew exactly what was going on inside.

She told of how she felt so

many different things, but lacked a voice.

In fact she said she felt so much that sometimes it

hurt. She could not understand

how anyone could say that she or anyone else on the spectrum could say they did

not have valid feelings.

It seems like some of the professionals are missing the real problem: communication

and listening. The fact is every person with

Asperger’s has their own way of telling us what is

going on, but it is up to those of us around them to care enough to listen.

This falls on to parents,

teachers, and therapists to figure out their individual language to help them be

able to express themselves. It’s not hard to see that

someone w i th such heightened sensory issues

would have twice as many

feelings as the “average Joe.”

This is where our continued

need to teach and help them learn becomes even more important.

It’s a matter of overcoming these obstacles to become

the amazing persons we all know our children can be.

Another excellent point is how many people are really

accurate at “putt ing themselves in someone else’s

shoes?”

The fact is the world is full of

people who have gotten by with only a vague knowledge

of TOM. I, for one, can honestly say

that there are people that I cannot even remotely relate to.

Then there are other people

that I don’t want to relate to.

One woman with Asperger’s said it best,

“If everyone just spoke their mind, there would be no need from TOM.” I personally agree with her.

It would make living for everyone A LOT EASIER!

Just like the old saying,

“Say what you mean, and mean what you say.” As a social worker I have had the benefit of working

with a variety of other professionals, like nurses,

doctors, therapists etc. Often we as professionals

are quick to say what we think has caused a particular behavior in a

child.

For example “well that meltdown was obviously because of the very bright light bulb that over stimulated him; we’ll change it to a dimmer bulb in class then next time he won’t meltdown” Others may well nod and

agree – and the fact is the bulb could have caused the

problem.


19


However what if 2 minutes

earlier little Johnny had been punched in the back

by another little boy; no one had seen it and Johnny had kept quiet.

THIS could have been the real issue all along, and our

“intuitive” theory of mind skills may be way off track

to assume that by removing the bulb he’ll be OK next time.

If we remove the bulb and

he gets hit again – he’s still likely to meltdown.

So there is a question mark as to how effective anyone can really be with theory of

mind. Impact TOM can have on

home, school , and community:

1. Eye contact

I remember someone telling

me when I was young that if you do not look someone in the eye while you are talking

to them they will think you are lying to them.

Even though I cannot remember who told me that,

I still to this very day look everyone I speak to in the eye.

I guess I’ve always felt that I

do not want there to be any q u e s t i o n a b o u t m y intentions or what I am

saying. However, someone with

Asperger’s does not focus on another person’s eyes but

other areas of their face and mouth.

I personally feel that the

reason most persons with Asperger’s stare at people’s lips they are talking to, is so that they understand what is being said to them. Like reading their lips; all of which relates to their lack of communication skills. I had really not thought

about the lip reading thing as much till one of my friends daughters started

having hearing issues.

He said they had noticed that her grades were not as good as usual and wanted to

know what was going on. After observing her in class

they realized that she was only getting the teaching

instructions when the teacher was facing the class but when she turned to face

the board she missed all of the instruction.

It was hearing this that made me realize that many

children with ASD probably do the exact same thing.

They are so focused on making sure that they get all

the information to complete their work that they miss other facial expressions that

explain things like sarcasm, metaphors , or o ther expressions that cause

confusion for our children.


20


2. Being rude

How many times have you

hea rd someone say something mean and thought that they were

being rude? But now that we have the

connection to someone with Asperger’s we realize that

there could be more to the story.

We now step back and watch the mannerisms of

other people and can determine fairly well if they have Asperger’s.

Children with ASD say what needs to be said; they are

blunt.

Is that a nicer way of saying being rude?

Maybe. But kid with Asperger’s they

are simply stating the facts (even if those facts are the

way they see them). They in no way intend to

harm anyone’s feelings.

4. Telling a little white lie S e v e r a l d i f f e r e n t

professionals claim that children with Asperger’s do not develop the ability to

deceive people like their peer counterparts.

But that’s not always the case. Here’s what one mom

Becky has to say about it: “That could be very true for

o the r ch i l d r en w i th Asperger’s, but my son Noah seem to understand very

well how to tell little white lies.

I say this because he knew what to tell me and not to

tell me when things went wrong at school.

But what he did not know was that the teachers would

email me about the happenings at school.

After being caught not telling me the truth a couple of

times and being grounded Noah has taken to being honest about happenings

because he doesn’t like the consequences.

Even though Noah was capable of doing that himself

he is not capable of

recognizing when others are

deceiving him.

I’m sure all of you have dealt with different issues from school; one that we dealt

with continually was other children “promising to be Noah’s friend” if he would

give them something.

It was always something d i f f e r e n t : p e n c i l s , notebooks, candy, or

anything else that Noah might have that they did not.

I do not know how many times I had to explain to

Noah that he was not to give his things to other children at school. “

One example of deception

that always sticks out for me is a story from a mother who spoke about her son with

Asperger’s who moved out on his own.

She was confident that she had taught him well and

that things would go just fine.

But then her son meets someone who was intent on

deceiving him of money and he gave them the money.

Even though it was not a huge amount of money, it still caused problems for

both of them.


21


She felt concerned about

letting her son live on his own; and he felt taken

advantage of and ignorant of others worldly knowledge.

I see these things every day when I read stories about people with Asperger’s.

But the truth is that there

are always going to be those who can deceive others no matter who they are.

It’s not about our personal

knowledge or lack of “experience,” but the other person’s needs or desires.

5. Dealing with conflicts

Part of dealing with conflict has to do with knowing the

exact intentions of the other people involved in the conflict.

So needless to say your son or daughter is always going

to have issues solving problems if it involves

someone other than themselves.

They already have problems determining how they feel or

are going to react to different situations.

Think about it for a second, your daughter has spent all day in a school where they

are barely just surviving. They do not know how to

communicate with the other

people around them. They

are constantly bombarded by different things that affect

their senses. Then they are put into a

conflict, it’s going to be a toss-up as to how they handle that conflict.

Now the fact is everything seems to come back to…

you as a parent continuing to help your children deal with becoming more

socially adapted in life.

B e c a u s e w h e t h e r professionals or parents

want to admit to it or not TOM is directly related to social awareness.

Professionals and others are

constantly looking to “label”

things that they are

complicating matters.

We already know that children with ASD are l a c k i n g i n t h e i r

socialization skills. We know that they need

help learning social skills.

We also know that they feel more then we could possibly imagine.

So as parents you should

keep doing what you are doing. Helping your child learn and grow like any

other child. Yes there are some different

things that you have to teach them, but it’s not

something you don’t already know.


22


For your EYES

only…

I am writing this article for anyone who cannot stand

the idea of touching, in the sense of physical contact real or imagined.

For me the idea of being touched is as bad as the

actual touching.

When I am in a room full of people I can feel them around me, as if they are

touching me.

I know that the people are there and that is it.

I am not really afraid, and I’m not sure why, but I just

don’t like it. There are many situations

every day in which I find myself surrounded by people and I have to deal

with it. T O O C L O S E F O R

COMFORT

Some different things that

can happen are classrooms,

ball games, or going to the

theatre.

In all of these situations I

have to sit too close to

people.

I feel stomach pain,

headaches, get sick in my

stomach and I move a lot.

I feel like I have to get out of

there as fast as I can. I don’t

mind to be in a room of

people with my own space.

I like my personal space and

a lot of it.

The way I see it, my personal

space bubble is at least two

times as big as everyone

else’s.

If I ran the theatre things

sure would be different.

Everyone would have to sit

10 feet apart with a row

between.

This is me at school . . .

My type of

theater:


23


If I need to participate in

these “people smooshed-in” events some things help:

It all comes down to being distracted.

I bring books, or games.

I talk about something else.

I get my grown-up to squeeze me and that helps a lot.

I prefer our small theatre close to home where I sit

near the door (never know when a fire could wreck your movie).

I like the same seat when I go.

This theatre is a little

quieter so you don’t feel like you are being bashed with the guy in the movie.

HE LOVES ME, HE LOVES ME NOT, HE LOVES ME…

One of the hardest things is

for me to hug or be hugged.

Kissing is also not ok.

It is easier to put this in a

chart so you can check if

this is ok or not (see bottom

of page) . . .

Mom asks me, “How can I

show you I love you.” Good

Question. So I have a list for

this as well.

1. Asperger’s Hugs

2. Words are o.k. “ I love

you”

3. Do nice things for each

other like reading with me

So basically to wrap this up,

I prefer it if you don’t touch

me.

If you want to be close to me

ask me what I am all right

with.

Understand and listen when

I tell you a situation makes

me uncomfortable.

I cannot always explain why.

Remember that every day

you show me you love me

with the things you do for

me and with your words.

Just because I cannot hug

you does not mean I don’t

love you too.

Alex Sevigny


24


And I Am Hungry

Like the Wolf . . .

It seems that certain things

hold a real fascination for

children with Asperger’s,

and so it was the same for

my grandson.

At first, he became

fascinated with dinosaurs

thanks to a television show.

It shared the imaginations

of a boy who knew all about

dinosaurs.

He taught all of his family,

friends, and teachers about

these creatures.

My grandson was only five

years old when he learned

the complicated names of

some of the types of

dinosaurs by watching that

program.

He knew whether a

particular dinosaur was

herbivorous or carnivorous.

He’d show me how you

could tell by the shape of

their teeth.

(Just in case I had no clue,

as was often the case with

me).

I hadn’t ever known

any th ing about any

dinosaur, let alone several

types, except for the T-Rex.

I would learn.

Together, my grandson and I

made a “Dino Journal”

together.

He preferred I drew the

dinosaurs, then he would

have me write the exact

name at the bottom of each

page.

For each dinosaur, and a

little bit of information about

each one.

His was, and still is,

fascinated with trains,

railroads, and all things

trains and railroads.

I have learned more about

railroads than I ever

dreamed I would know.

I had a grandson who was

like a walking “train

encyclopedia”…

We would play games like

“Name that Train”.


25


We were still trying to find

our way as a family, into my grandson’s world.

So we were up for anything that interested him and

encouraged him to talk. While we tried to figure out

how to manage some of the behaviors that would

suddenly come out of nowhere.

And sometimes the only diversion that worked would

be to start talking about trains.

His attention turned to wolves just before his seventh birthday.

He loved photos of wolves,

books about wolves. The movie “Alpha and

Omega” was the catalyst into this fascination.

At one point in the movie, a wolf complained that his

back “felt like wood”. It was, I would realize later,

why my grandson would create his own particular

breed of wolf (in his mind) which he called “The Woodback Wolf”.

When he first asked me what kind of wolf I was, I

hesitated.

He would then ask me,

“Are you a grey wolf or a white wolf.” So I would say, “I’m a grey wolf; what are you?” (I learned that his question was a cue for me to then ask him the same

question). “I’m a woodback wolf, Nana.”

he would tell me, with a

very serious look.

He would go into a lengthy desc r ip t i on o f wha t woodback wolves were,

where they came from, where they live, what they eat, and on and on.

He loved to have his face

painted, on weekends and holidays, like a wolf.

He would howl quietly, but extensively, speaking only

what he could decipher what a wolf would be saying, and then he would explain what

the cadence of howling meant.

At Easter, he wanted to be “The Easter Wolf”.

This caused a great deal of alarm when he began to

speak about it, freely, in his classroom.

He was told not to scare the other children by telling

them stories of the Easter Wolf.

He would often come home distressed and tearful

because no one believed him.

That there was really an Easter Wolf, and that the Easter Wolf was the Easter

Bunny’s helper; he wasn’t a scary wolf at all.


26


Finally, he felt “redeemed”,

when his mother took him to have his photo taken with

the Easter Bunny. And there, perched on the

Easter Bunny’s knee was my grandson, wearing “wolf paint” on his face.

To him, it proved that the

Easter Bunny and the Easter Wolf could live in perfect harmony.

Every time I look at that photo, I think about the

lengths he went to and how he used his “wolf-ness” to cope with the

high anxiety levels that came with his Asperger’s Syndrome.

Somewhere during this time, my daughter found the song, “Hungry Like The

Wolf” and had played it for her son to listen to.

It wasn’t the words, of the song that counted or meant

anything to my grandson. To him, it was a song about

a wolf, it had a good beat, and the refrain, “And I’m

hungry like the wolf” made him smile.

That was really all that mattered at the time.

Finally, it was “Fine Arts Night” at his school.

Having been away, the week

before, his mother and I hadn’t realized that Fine

Arts Night included a concert where each class would get up on stage and

sing a song they had been practicing for over a month.

As we were moved along the corridors of the school into

the gymnasium and saw the stage, lights, and everyone gathering in there, both my

daughter and I became apprehensive inside.

My daughter knew that her son did not do well in

crowds, and people came pouring in to that gym filling every available seat.

My grandson was sitting

with his classmates near the stage.

Finally, the lights dimmed, children would come up on stage in a group and the

movie screen came up behind them.

It would reflect what song they would be singing, who

wrote the song, the children’s teacher and their

grade. Since it was a big school, we

sat watching group after group of children singing, clapped politely, and

watched them smiling and bowing after singing their

song.

As time wore on, I could see

my daughter straining to see her son in the small group huddled by the stage with

their teacher. And then, it was my

grandson’s class’s turn to sing.

We watched as the children came up on the stage and

now we could see my grandson in the light,

standing in the back row.

I was astonished that he was

able to do that, and I tried not to think that somehow

this would go wrong. When I looked aside of me,

at his mother, she was literally on the edge of her

seat trying to smile and wave to her son.

A as if she was willing him to go through with it, trying to convey she was there, it was

okay, and he would be fine.


27


Their song was “Mr. Golden

Sun”.

The screen came up, they cued the music and the song began.

Eight notes into the song, my grandson began to sing

“Hungry Like the Wolf”, full bore.

His classmates took turns glancing over at him, back

at him, and his teacher, crouching before them, was

trying to wave at him to stop, and have everyone finish the song.

Finally, the song was over.

People clapped; some looked a bit confused.

One woman was overheard asking another person,

“Did that little boy have a solo in that song?” My daughter was out of her

seat like a shot, as her son came off of the stage crying.

When she got to him, he said,

“My teacher is mad at me.”

His teacher was assuring him and my daughter that she wasn’t mad, but was

also hurriedly trying to get her students and all of the

other students back on the

stage for the Grand Finale.

My daughter hugged her son, wiped his tears and told him it was going to be okay.

She remained near the stage area as all of the children

piled on to perform the finale.

My grandson was on the

stage for the finale, but he didn’t sing; he just stood there looking so lost and

very confused.

We drove home and talked about how nice the art exhibits were, how nice it

was to see the school and all of the art work, and how nice the show was.

It was late, it was a school

night, and we all knew that

if my grandson felt overwhelmed, he would not

sleep well at all. He got through the night,

and went off to school the next day.

That day, after school, he got off of the bus and broke

down crying in his mother’s arms.

When she asked him what was wrong, he said,

“I’m a disappointment; I’m an embarrassment. My teacher told me that today. Am I a disappointment to you, Mommy?” It was heartbreaking.

Children with Asperger’s, I’ve found, revere their teachers,

and any thought of e m b a r r a s s i n g o r disappointing their teacher

is devastating to them.

It took days of reassurance and discussions to help him through this experience.

He had believed, the night

before, that she wasn’t angry with him.

The following morning turned out to be another story.


28


The school tried to do the

same thing, this year, and felt my grandson would do

just fine this time. As it got closer and closer to

the event, he began to regress; he would wake up in the middle of the night

with nightmares.

Finally, only two days before the event, the school decided he didn’t have to

participate on stage.

But he could be the “cameraman” for the event and take pictures.

It didn’t work.

During class on the day the Fine Arts Night was to be

held, he had a major meltdown in school.

The teacher , nurse , psychologist and principal

had to become involved.

He was a train careening

down a perilous track . . . He was a dinosaur losing

control . . . He was a wolf who was very,

very scared.

It was decided that he didn’t have to attend Fine Arts Night.

For my grandson, and all of

us, it was an enormous relief.

We continue to learn, to try and understand, and to provide a nurturing and

encouraging environment.

There are lessons every day, and we are all still trying to find our way.

What matters is that we keep trying

Tess is a Registered Nurse

by profession, the mother of two children, and grandmother of four

wonderful grandchildren.

She is 63 years of age, and says she is still learning about ASD every day.

Tess Stoffa -

Grandma

to Nicholas


29


While we were still at Sinai,

the hospital where Jermaine was born, licking our

wounds, feeling sorry for ourselves, and trying to make some sense out of this

madness. W e s a w a

gazillion specialists in an attempt to get to the "why?"

of this thing with Jermaine's blindness.

Also the facial abnormalities and the emotional roller

coaster we didn't bargain for but were riding, in spite of our requests or lack

thereof. Jermaine's pediatrician, Dr

Walcher, who reminds one of "Mr Rogers" from

Mr. Rogers Neighborhood was a real sweetheart.

He was loss for words and did not know what to say to us.

He hugged me as I bled

black eyeliner on the left sleeve of his crisp, freshly starched, white jacket.

He told us this was beyond

his scope of expertise and we would meet with

the ophthalmologist, to

check Jermaine out, and tell us his findings and

recommendations. Dr . Dankner , whose

name should have been, "Dr Doom," had the bedside manner of an urban alley

cat. He delivered the blow in his

monotone, uninterested, heartless manner.

"Your baby is blind but has light perception in the good eye. (Heck, was there a "good" eye?) He will need a corneal transplant, though i t probably won't restore sight. The left socket has no globe at all and but just a cyst with garbage in it."

You'll, most likely have to go to Johns Hopkins Hospital when you leave here for the operation. You will meet with Dr. Hirst and Dr. Kidwell. I wouldn't get my hopes up if I were you because it doesn't look good and I don't think he will ever see. Here is my number and the numbers of the other doctors." With that, he left with not one compassionate word or

gesture.

Jermaine’s mom Jacqui . . .


30


James and I stood

speechless until this arrogant man left the room.

Ironically, Dr. Doom was right. Jermaine would never

see. I would later apologize to him

Within a week we were sent to the infamous Johns

Hopkins Hospital where Jermaine was examined each shift (3 times per day)

as the hoards of docs and interns traipsed through our

room and examined him in petri dish style.

It was concluded by the Hopkins geniuses that Jermaine would not . . .

Live to see his second

birthday . . . Would be deaf in one ear . . .

One kidney bigger than the other . . .

Wouldn't be able to get

craniofacial surgery until he was about 15 . . .

And would be retarded. Could it get any worse?

Jermaine had a failed

cornea transplant and we were sent home from Hopkins.

We were totally deflated

but with orders for a social

worker, occupational and physical therapist to visit

several times per week to help to build Jermaine up to his fullest potential.

Our house was a flurry of activity as the different

disc ip l ines did their f u n c t i o n s . A n d ,

throughout, I played classical music, non-stop for my little warrior, Jermaine.

You can see him below as a

very young man. Next month I’ll share more

of the t r ia ls and tribulations of living in a home constantly “invaded”

by professionals . ..

About the Author

Jacqui Kess-Gardner, is a

registered nurse, former teacher, makeup artist, h a i r s t y l i s t , Z u m b a

instructor. She is also the Director of

Nursing at an assistant living facility and the mother

of Jermaine, an Aspie Piano extraordinaire and a real estate agent son, Jamaal,

who was the first pianist.

Jacqui is the author of "The Incredible Journey" the Jermaine Gardner Story,

which can be found at Amazon and Barnes and Nobles.


31


The Importance of

Friendship

I remember reading an article my mother wrote

about an event about compassion, which got me into th inking about

f r i en d sh i p and t h e importance of it.

How important friends are reminds me of a recent

event in my life that happened.

I have a friend who is a Brony

[a male fan of My Little Pony: Friendship is Magic]

and since he couldn’t go

inside Comic Con, I made a promise to him that I would go to the MLP Panel for him.

I did and while it was probably one of the

strangest experiences in my life, I heard stories about

how much this kid’s show aimed at little girls is powerful toward all people.

All of the stories were

moving; one from helping a young woman cope with her parents splitting up, to

another about an Army

ve te ran cop ing w i th depression.

While the core morals are about friendship and how

important it is to have a good support system, to hang out with the right

people and be you.

It has made me think of other similar stories I’ve heard about how different

f an bases and the importance of these fan

communities around the world are toward others.

I didn’t get to talk to any of the actors, writers, the panel, or get an autograph

as the line was not only really long, but you needed a

ticket to get one. However, I did tell my friend

about what they showed and he was excited.

I kept my promise to him, and it was a surprisingly

insightful day and lesson about the importance of friendship and what it

means to be a friend.

My questions for you my amazing readers is…

Have you ever made a

promise to a friend?

Have you ever wanted to be included in anything and asked others to hang out

with you? Today/tonight make a list of

all the important things, issues, topic’s, etc, on what

YOU think the importance of friendship means to you, how your friend’s affect you

and who really are your real friends and who are not.

What is your definition of friendship?

Then afterwards read your list to yourself once and

burn it under the full moon.

There you will release your definition into the world and you’ll meet and make new

friends who represent your definition.

Happy trails till next time everyone.

Dylan Bailey

- Proud

Writer with

Asperger’s

Magic & Wonder - The Insight of an AS Man


32


Wonder Cat . . . Her left leg twitched

restlessly. Perspiration glistened on her forehead.

To the untrained eye Amy was having a bad dream.

It was much worse . . .

Luckily “Pudding” knew what was really happening.

The 21 pound ginger and white cat could sense

danger. Quick as a flash he jumped

on Amy’s chest to wake her.

She woke briefly and shouted her son Ethan for help.

Amy was suffering a diabetic seizure.

Ethan was snoring in his

room and wouldn’t wake. So Pudding ran and jumped on Ethan to wake him too.

Ethan awoke with a start.

He quickly dialed 911 and Amy was rushed to hospital.

Her condition was stabilized and she went home next day.

But the Dr. explained if

Pudding hadn’t woken her - she would be dead.

The news hit Amy like a ton of falling bricks.

Her cat had saved her life!

Later that day Pudding got the BIGGEST tin of Fancy

Feast cat food you’ve ever seen!

To this day Pudding still cares for Amy.

She sits by her feet and can smell when Amy’s blood

sugars are getting low. Humans and felines have an

amazing bond.

Which explains why 33% of all households have cats.

Research shows cats can even promote good health:

* They can lower our blood pressure, by purring.

* They reduce stress, anxiety and depression.

* Caring for them takes your

mind off your own problems. * They make you live longer

(by giving you meaningful

social interaction).

Dr. Sigmund Freud once

said: “Time spent with cats is

never wasted.” I couldn’t have put it better

myself.

In fact cats can even teach you a great deal about Asperger’s Syndrome.

In 2006 Kathy Hoopman

published a great book called “All Cats Have Asperger’s Syndrome”.

It’s a humorous and gentle way of introducing the

issues and main behaviors of A s p e r g e r ’ s t h r o u g h

comparing it to cats. A great resource for the

under 10’s particularly, but a fun read for everyone.

You can probably pick up a copy in your local library.

There’s even a great video of a young man with ASD

reading it, which I’ve put o n l i n e f o r y o u :

www.parentingaspergerscomm u n i t y . c o m /public/1823.cfm

Weird but true





33


Advocacy 101 -

The Biggest Challenge

In an informal survey I asked… “What is your biggest chal lenge re la ted to Advocacy for another person OR for yourself?

ANSWERS:

Fear of PUNISHMENT

Fear of REPRISAL

Fear of HARM

Note, all three answers above relate their biggest

challenge to a FEAR of repercussion.

Edmund Burke once said: “The only thing necessary

for the triumph of evil is

that good men should do nothing.”

Basically meaning that when good men do nothing, evil prevails.

When you advocate for someone or something, there

are opposing people who don’t agree or don’t want to

acquiesce to the other’s belief.

Somet imes based in integrity, yet sadly often

based on the agenda of the decision-maker that is not in the best interest of the

person you advocate for. One survey participant said,

“My biggest challenge is remaining steadfast in what I believe in and not giving in to other side or being talked out of my own position.” Another participant with an

adult brother (older than himself) with Asperger’s

refuses the help of the Neuro-typical* brother, who in turn feels he must give up

out of respect to his brother.

This is tough as the AS brother needs help and the responsibility of the older

brother will likely fall one day in the lap of the *NT brother.

Even earlier today, taking

my AS son to a new doctor who documented in her

notes that he has Asperger’s “Disorder” (vs. Syndrome).

This shows how his records c a n b e i n c o r r e c t l y perpetuated as when I

brought it up to the nurse, she said she legally could

not change it in their system. While a diagnosis in this

case is just a name, it is

the concept that must be caught and rectified early on so as not to perpetuate

incorrect information that is seen and continued on further documents by other

d o c t o r s , e d u c a t o r s , insurance carriers, etc.


34


My main message:

SPEAK UP as early as

possible and sometimes that means that you might come off as a pest or difficult

person. That said; in the long-term,

it will save you time and energy.

As if carried on, it will be carried on to too many other

documents so stop it in it’s tracks.

I teach a group (sometimes private) program entitled “Direct with Diplomacy”.

It was conceived to assist

participants in dealing effectively with institutions

and much of it starts with your (the Advocates) mindset.

And the position so when you go to bat in the

trenches, you have the words and the confidence to

do so in a way that won’t turn off the people you deal with.

Keep in mind you want to

get to the bottom line of what is in the best interest of the child (or person you

Advocate for). Annd while on occasion you

might need to smile through anger, the bottom line is the

result you’re going after.

KEEP THIS IN MIND –

ALWAYS, in all ways!

Mo Bailey, MCC is a non-

traditional Advocacy Coach who puts on

workshops, groups and works with families to coach-consult in getting

their child / young or older adults needs served in an efficient and

cohesive manner with the providers involved.

She works globally with her home base being in

Southern California, USA.

She can be contacted d i r e c t l y a t [email protected].


mailto:[email protected]

35


Dave, I just had a meeting with my sons school. He is 5 has just finished first year in primary school (Ireland). He got on so well & I am so proud. It's just they were saying he is very factual when he plays. He doesn't seem to have much emotion. Also they said his focus needs to be better. Any advice on how I could improve these areas? Thanks Jackie. ------------------------------------------ Jackie, He will be very factual

when he plays. Asperger’s kids are great at facts – they are concrete, solid things they understand. Imaginative play is more unpredictable and much tougher for them. Focus too is an issue: Lkely your son is distracted (more than others) by background noise, smell, non verbal language, verbal language and more. They need to provide a way to teach him with as little other stimulus as possible. He DOES have emotion. Bags of it! The hard bit is teaching him to understand his feelings and

talk about them. This won’t come natural to him. Start with a simple favourite cartoon . . . Talk about emotions being displayed there by characters. Gain some dialogue. See what he understands and what he doesn’t. Then start explaining with clear examples. Good luck , Dave

-------------------------------------------- Dave, Thanks for your reply. I will try all the things you have suggested. I know Patrick has emotions, he just finds it difficult to express or display them. He prefers to just move on without discussing it so I will need to work on that more. He is a mind of information. He comes out with facts about things we may be talking about and I honestly don't know how he knows some of the things he says as most are new to me! It's amazing! He is my little Sheldon Cooper!!! (Big Bang theory - not sure if you have

watched the show)! Thanks again for your help & best of luck & well done on the newsletter! Really love reading it!


36


At this time of year many

kids - especially in the USA - go to summer camp.

Many of these offer a program for kids with

Asperger’s. For example in Greensboro,

North Carolina they run a music camp for people 14-

22 with ASD. Nate Elkins is a young man

with Asperger’s about to start 6th grade.

His mum Christy was thrilled with the camp. She

said: “For kids with Asperger’s, music can give them an outlet to express themselves when they don’t have the words for it. My son is very verbal, but he expresses how he feels through songs. If he’s happy, he plays happy songs. If he’s not feeling great, he will play more mournful or sad songs.” In Glassboro, New Jersey is

a camp which prepares teens with ASD for college life and better social skills.

It’s called the Young

Professional Exploration Camp and they get involved

with all aspects of film and TV production.

It culminates in a special news show recorded by the students.

You can find more by

G o o g l i n g “ A s pe r g e r ’ s S u m m e r C a m p s ”

One drawback is they can be expensive. Why not have a

camp at home instead? * Ask neighbors or friends if

they want to join in * Make a schedule like a real

camp has, pick days of the week to be “camp days”

depending on your schedule. * Get craft kits inexpensively

from places like the local flea market make jewellery,

dream catchers, bracelets,

charm bags, Zen gardens, painted pebbles and other

cool projects * No pool? Who needs a

pool , grab water balloons or squirt water guns for fun.

* Grill hamburgers and hot dogs and have “camp food”

on camp days * Make fruit salad, a fun

camp activity and snack once ev e ryone adds

something to the bowl * Tie-dye t-shirts and use

fabric paint to make your own official camp home t-shirts

* Build something from

popsicle sticks.

Above all - have fun!

Coming up next Month

Employment Options for Asperger’s

Celebrating your child

The Low Down on Music Therapy


love and marriage (and asperger’s) · love and marriage 3 aspie x factor — clay marzo 6 mom’s...

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