Re: OT- The prison of ASD

October 12, 2004

I understand. Our NT son is 13 and he has had to deal with his ASD sister. He

gets frustrated and is also very good with her. I noticed he started treating

her more compassionately around 12. Sometimes the frustration is so hard to bear

- especially for us when our daughter is around other kids her age who are NT.

The differences are just so clear, but she brings something to the table, too.

She's kind, loving, forgiving, and tolerant. Most of her friends wouldn't be

described like that. Perhaps the first words that come to mind for them would be

sports involved, team players, dancers, spelling bee winners - mainly group

oriented. Our daughter just doesn't follow a group mentality. But, most of her

" friends " are accepting - some are down right hateful. She had a great day

yesterday which I will always be thankful!!!! I'll keep your family in my

prayers. I worry about our son, too. But, I believe - as you - that he'll be a

much better person because of his experiences with his sister. I told him not to

get jealous of the time that his sister requires. If anything ever happens - and

he need our help - we'll do anything and everything for him, too. He knows how

much we love them both - but, I think it helps for him to see us discipline our

daughter, too. We try to treat them equally as best we can. We don't have a

support group in our area. I've often wondered if it would help our son to talk

to other siblings - just so he knows he's not alone.

Shari

OT- The " prison " of ASD

Just wanted to share some thoughts on coping after a very difficult

weekend with my high-functioning daughter who had a tantrum in the middle

of a rare family outing. The same thing happened to a friend of mine and

we discussed the effect this has on our other children. As we hurriedly

left the pumpkin patch on Saturday, my 11 year old NT son sobbed in the

car as his sister continued to rage about having to wait for me to pick up

a bag of apples at the farmstand. My friend's son derailed a family

church outing and she told me that she was so angry that she couldn't even

go to church when it was over.

I had this thought about Mandela. He was imprisoned for many

years and one of his most significant accomplishments was that he

emerged after years without bitterness. Maybe one of the goals for us

as an ASD family is to emerge from this without bitterness also. It's

so hard - because I really do feel like I am in prison - my daughter's

challenges place incredible restrictions on our family life and on my

life. But if we can show people that we can love our children even when

they are incredibly unloveable - what a powerful lesson for the world.

As much as I regret the pain that my son lives through - I know that he

will never turn his back on someone in need and I hope he is learning

important lessons about not letting hard times crush your spirit.

I don't know if this is helpful for anyone at all - but I find that

the listserv community has been my emotional lifeline for over five years

now - a circle of people who " have been there " and know the pain of seeing

other people live in a different way. I wish you all strength to continue

the journey.

Kathy McNamara

Many frequently asked questions and answers can be found at

<http://forums.autism-rxguidebook.com/default.aspx>

October 12, 2004

Several photos from the 1940s and early 1950s show me tantruming and/or

extremely tense during brief, informal foto sessions at family reunions.

From mid-school onwards, I often walked away from school and never

preferred crowded places, calming myself by immersing myself in the

nearest forest. Only after wallowing in med lit (beginning in 1989) and

learning about hyperstimulation have I been able to be more conscious of

situations likely to induce a meltdown in me, to be more able to steer

away from those situations, even as social pressures often try to impose

participation.

Even today, social avoidance remains an innate " talent " - even as I've

learned to override those tendencies at conferences, etc. I can see a

neighbor as I'm about to exit my domicile, and my usual reaction is to

exit moments later, after the situation inducing social stress has passed.

Birdman of Alcatraz portrayed a prisoner who became a bird specialist.

But I wonder if a person who accepts his or her solitudinality amidst

nature, beside nearly deep nature is imprisoned - or if that's a

construct created by people who are neurotypical and thus are more

traditionally social. Many of Bev Doolittle's paintings delineate human

spirit entwined with nature, a consciousness that western civilization

continuously endeavors to suppress. Of course, as conquest continued on

Turtle Island (now called the US of A), the old-ways Indians were likely

to be killed, imprisoned, or confined to " mental " instutitions.

Rambling notions on a sunny morning in the mountains,

October 12, 2004

Kathy, Shari, and All

Synchronicity urges me to add a note to your important dialog...

Last Saturday I visited the Tehachepi Prison in California with a group of men

devoted to improving the criminal justice system. The group includes a

just-retired Associate Warden of the prison. Being taken around by someone who

knew the prison, its staff and many of the prisoners so well moved the

experience into a deep place in me that was life altering. Several of the

strongest moments involved watching the visiting families, many with young

children, talking and weeping with the inmates while the men were holding their

babies. Another profound moment was when we visited the " Special Needs "

dorm--166 men all in one large room and all on meds.

In our group's councils after the prison visit I was struck many times with the

similarity between the extended " prison clan " --prisoners, families and prison

staff--and our ASD clan. I see our children imprisoned by their (polluted)

" environment " in much the same way the literally imprisoned are incarcerated

behind walls and electric fences by a society that is not yet willing to embrace

their shadows in a truly informed and compassionate way.

For us this challenge begins in the family with siblings, extends in many cases

to our schools and also to our communities. I share your feelings that our NT

siblings have an enormous opportunity to see and know compassion 24/7. I

believe they and all of us are being trained to move our culture into a greater

sense of mutuality and interdependence. I see this also in the " inclusive "

classes in schools when the teachers see the learning possibilities for the NT

as well as the Special Needs students.

Chelsey's siblings have struggled with the same issues of embarrassment,

destruction of their personal property, having their family life significantly

altered, etc. by their ASD sister. They also love her as do your NT

children--and the complexity and sophistication of that love I believe will

serve them well in the future. Chelsey's parents have a weekly family meeting

to discuss these issues and relate them to the families spiritual life (They are

Mormons). These meetings have frequently had the theme of " What are the

opportunities offered us by having Chelsey as a member of our family? " It is

not easy for them but they are growing day by day with the challenges. One

decision they made some time back was that her two older sisters would

occasionally do the neurofeedback (PlayAttention) sessions with Chelsey so that

they could understand more intimately the nature of her difficulties and

participate in the healing process. Chelsey's mother also attends a monthly

support group

for ASD parents.

We are all being healed...

Jack

Dwayne wrote: