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News from the Special Families Guide at Alternative Choices

Special Families

Guide Newsletter

May 15, 2007

Formerly at Yahoo Groups this newsletter now comes to

you through " Constant Contact. "

Children with special needs can be endearing, lovable,

and extremely challenging. This newsletter informs subscribers about topics

which cover autism, developmental disabilities, cerebral palsy, learning

disorders, special healthcare needs, and many other conditions--with a focus on

the special needs of families and emphasizing the role of fathers.

In This Issue

New Review of " Voices from the Spectrum "

" Do You Go to Church? "

News Segment on Siblings of Children with Disabilites

Featured Article

New Review of Voices from the Spectrum

From PsycCRITIQUES (American Psychological Association)

reviewed by Ann Norfleet

Voices From the Spectrum: Parents, Grandparents,

Siblings, People WithAutism, and Professionals Share Their Wisdom relates 60

personal narratives written by parents, siblings, spouses, close relatives,

highfunctioning people with autism (Asperger's syndrome), and professionals who

work with children and young people on the autistic spectrum. The authors of

these personal accounts range in age from the preteen years to the eighth

decade, and they represent a range of countries and cultural backgrounds. Their

personal experiences are shared with the reader in often intimate and eloquent

discourse. The fortitude and bravery with which these people and their families

live their lives is moving and admirable. One of the writers is an 11-year-old

highly gifted neurotypical girl who has two autistic siblings: a sister who is

not verbal at age 5, and a brother who has cerebral palsy in addition to being

autistic. She writes honestly and insightfully about life with her brother in a

short composition titled " Why Am I So Resentful? "

As the editors of this book, Ariel and Naseef have

certainly achieved their intention that it " will provide beacons of hope and

positive models of acceptance and understanding " (p. 14). They have generously

pledged all royalties from this book to the United Nations Children's Fund.

...The book presents a very realistic and compassionate

view of what it is like to be autistic, and it gives a glimpse into the

tremendous stresses on families with an autistic child. The book includes an

excellent reference list of both books and Internet resources for further

information about ASDs. It does not have to be read from beginning to end; one

can selectively read any selection or section of the book that is of interest.

This engrossing book of personal essays addresses the

soul of autism, in terms of the impact this condition has on the family, the

community, and the person who has an ASD. It is a compelling read, composed of

true experiences that reveal love, pathos, patience, and persistence in the face

of the unremitting demands of autism. The courageous contributors to this book

have shared their personal narratives of the challenges, complications,

frustrations, joys, and heartaches that autism has brought into their lives.

Unlike the Scarecrow

in The Wizard of Oz, autistic children and adults cannot

get a new brain. However, Voices From the Spectrum makes it clear that the

families and professionals who work with ASD children and adults have hearts big

enough to cope with the many challenges presented by an autistic loved one. This

is an inspiring book that will enrich the reader's understanding and humanity.

" Do You Go to Church? " is more complicated than it sounds!

Reverend Bill Gaventa, M.Div., Associate Professor, The

Boggs Center on Developmental Disabilities, Wood School, UMDNJ

Last fall I had the pleasure of speaking at a kick off

event for FIND (Faith Inclusion Network for Disabilities), a new network and

organization begun by the Arc of Chester County, Pennsylvania in collaboration

with several other public and religious organizations. It's a great name,

representing their goals of helping faith communities to " find " people with

disabilities and their families who have often been " lost " outside of the

circles of church and synagogue, and, on the other hand, the gifts and treasures

that can be " found " in inclusion of people with intellectual and other

developmental disabilities. (For more information, contact or

cc-find@...).

After an opening session, three discussion groups

provided opportunities for the participants (mostly family members) to tell some

of their stories about their experience in their churches or synagogues. I

floated between the groups, and, like always, there were some powerful stories.

One mother talked about the incredible gift of being welcomed in a congregation

for six months by a pastor who just figured out ways to have different members

assist with the child with autism, as if it were no big deal, enabling the

family to participate in many aspects of congregational life. The next pastor

did not have that same skill, and put the responsibility back on the family to

supervise their child. The result was, of course, that they no longer felt at

home there, and lost that sense of welcome. The other unseen loss was to the

wider congregation and the people who had been acting on the invitation and call

to make sure this child (and family) were included.

In another group, a Pennsylvania monitor noted, " We

interview adults with developmental disabilities and one of the 80 questions is

'Do you go to church?' " It is not a very sophisticated spiritual assessment

(see the last column), but it is a start. " The answer, " he noted, " is usually

'no.' I follow that up with 'Would you like to go?,' and the answer is usually a

shrug or a 'I don't know.' "

On the surface, that is a lack of interest. But beneath

it may be a host of issues. Have they had any opportunity to go, or experience

in a faith community? Have they had negative experiences in the past? Had

there ever been a real invitation to go, or the opportunity? The next possible

question for a monitor or planner might be, " Would you like to go church (or

synagogue) shopping, like anyone else does when they want to explore or find a

faith community? " The core question is whether they have had the kind of

experiences or opportunities that lets them make an informed choice or answer to

that question? Or even more deeply, have people learned not to express

preferences and choices because they have never really been heard by those who

support them?

One of the ways the same issue gets raised on the faith

community side is that when people with developmental disabilities start coming

to a congregation, and there are questions raised about their understanding or

behavior, the issues are usually addressed in terms of their disability, not in

terms of the lack of opportunity and experience, and the kind of learning that

" typical " people demonstrate because of the opportunity for repetitive

participation and practice. " Going to church " may be a scary activity if one

has not had the opportunity to do so, raising perfectly normal anxieties about

what I am supposed to do, how I will be received, and what people will think of

me.

One way to address this lack of opportunity,

understanding and confidence is to frame " adult religious education " first as a

community inclusion activity. Think of what could happen if day programs and

other adult services, as they work on community exploration and inclusion

activities, started calling clergy and congregations and saying, " We have an

adult class that is exploring and learning about the community. They are

interested in learning about different religions and congregations. Could we

come over to your church/synagogue/temple some day during the week and have

someone tell and show us what goes on there, talk us through what happens in a

usual worship service, and help us understand what it means to be Jewish,

Baptist, Catholic, etc..? Then you start to build awareness and understanding

as well as the capacity for informed choices, in addition to opening doors for

invitations and opportunities.

There is another side to this: people who want to go,

but find all kinds of barriers, not in the congregation but in the service

system. At the Arc of Mississippi state conference last summer, a staff member

from the Mississippi Protection and Advocacy Office told me that the most

frequent call he gets is from adults with intellectual disabilities whose staff

or caregivers will not let them go to church, or won't help provide the supports

to do so. The next column will explore some of those issues, but for now, kudos

to the Arc of Chester County for starting a program to help people with

disabilities and their families and faith communities FIND one another. To find

a place where you are welcomed and belong, or to have the experience of " being

lost but now found " are core spiritual and religious experiences that have been

around for centuries.

Reprinted with permission from the author and of

inSight, the publicatoipn of the Arc of the United States at www.thearc.org.

News Segment on Siblings of Children with Disabilities

from Don Meyer

donmeyer@...

www.siblingsupport.org

To commemorate April 10th, National Siblings Day, the

Sibshops at Children's Hospital and Regional Medical Center and Anne Guthrie

planned a special Sibshop that featured activities for both young and adult

sibs. One of the adult sibs on hand was one of the very first Sibshoppers

ever-from the 80s-- and it was a thrill to have her there. I was asked to lead

a few activities with the young and adult sibs and I had a great time.

KING5, the Seattle-area NBC affiliate was there to film

the event--and the reporter and the camera guy seemed to be having as much fun

as the kids! To see the clip--and some really cute kids, an aging baby-boomer,

and a nice report on what Sibshops are all about-please visit

http://www.king5.com/video/index.html?nvid=139431

Let us know if you like this new format or not, and feel

free to pass along ideas for future articles on issues you would like to read

about in this newsletter. Ig you think this information may be of use to someone

you know, please forward this e-mail.

Best regards,

Naseef

Alternative Choices

www.alternativechoices.com

Public Radio Broadcast Autism Throughout the Lifecycle

Listen Online at the link below this article

On April 30, 2007, " Voices in the Family " hosted by Dr.

Dan Gottlieb presented a panel on autism on WHHY (FM 91) in Philadelphia.

The Autism Society of America states that autism is the

fastest growing developmental disability. But what do these rising numbers mean?

What can we do now to help autistic children as they get older, and want to lead

productive, independent lives? How can families navigate the challenges of

autism? How can communities service the population of adults with autism? You'll

hear excerpts from a recent panel discussion on the topic of autism throughout

the lifecycle. It was part of a conference on autism put together by Variety,

The Children's Charity. Dr. Dan Gottlieb's guests were Suzanne Buchanan,

Naseef and Shore. Suzanne Buchanan, Psy.D. is Director of Clinical

Services for The New Jersey Center for Outreach and Services for the Autism

Community. Dr. Naseef is a psychologist specializing in families of

children with disabilities. He's a father of four, including a son with autism.

He has co-edited Voices from the Spectrum: Parents, Grandparents, Siblings,

People With Autism, and Professionals Share Their Wisdom. Shore has

written Beyond the Wall: Personal Experiences with Autism and Asperger

Syndrome. "

Listen now or later at:

voices20070430.mp3

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News from the Special Families Guide at Alternative Choices

Special Families

Guide

Newsletter

Managing Stress December 2007

Eating Out

by Stanley Klein, Ph.D.

Stanley D. Klein, Ph.D., answers readers' question about child

development and family life. Dr. Klein is a licensed clinical psychologist and

the co-editor of five books including Reflections from a Different Journey: What

Adults with Disabilities Wish All Parents Knew (McGraw-Hill, 2004) and You Will

Dream New Dreams: Inspiring Personal Stories by Parents of Children with

Disabilities (Kensington, 2001). He is a frequent speaker at parent and

professional conferences.

Q. Are there guidelines for dining out with a child with a

disability?

A. My goal for any activity a family does together is that the

activity is enjoyable for everyone and no one participates unwillingly. In many

families, this will require careful planning and negotiations. It may be an

impossible goal in families with children at different developmental stages

unless some family members are able to compromise.

In dining out, there are community expectations for

appropriate behavior and dress that require different skills on the part of

diners, with or without disabilities. Then, there are special considerations

depending on a child's specific disability.

Let's consider the possibilities for enjoyment in three

different kinds of restaurants. " Fast food " restaurants have minimal behavior

expectations and dress codes. Food is quickly available and minimal eating

skills and manners are needed. It is permissible to wander, make noise and even

be messy. It is also acceptable to need help with eating or forget about using

utensils. Since food is relatively inexpensive, parents are usually less

concerned about children being picky or not finishing a meal. Also, these

establishments usually have readily accessible parking, entryways and bathrooms

and may even have play areas. While dining out in a fast food restaurant may not

be an adult's idea of " dining out, " it is a good place to begin with any child.

Pre-school children enjoy " fast food " restaurants as do older children,

teenagers and many adults.

More is expected of patrons at " family style " restaurants.

While dress codes may still be minimal, some ability to wait patiently for the

food to arrive and be relatively quiet and well behaved is expected. Although it

is acceptable to assist children who need help with eating or cutting, skill

with utensils is also expected. It is also acceptable to feed anyone who needs

to be fed. In these settings, many families avoid booth seating because they

know their children do better with some distance between one another. Most

school-aged children and teenagers can be comfortable with their parents in

these settings.

Expectations at " fancy " restaurants are more demanding. Adult

level skills are needed because diners usually have to dress better, wait longer

and behave in more " mature " ways. Some adults and many children and teenagers do

not enjoy such settings.

There are special considerations needed for some children. For

children who are unable to sit still or are easily distracted or are likely to

speak loudly or make noises, restaurant dining will be difficult and may not be

enjoyable. Some families that include a child with such behaviors designate a

willing family member or friend to be prepared to go for a walk with the child

when necessary.

For children (and adults) with mobility disabilities, parents

can check, in advance, on the physical accessibility of the restaurant including

parking, entering and exiting the restaurant, getting to comfortable seating and

using the bathrooms. To do such an inspection, explain your concerns to the

restaurant manager and ask to be shown around. Bathrooms often need especially

close inspection to be sure that there is ample space and privacy for

individuals who use wheelchairs and/or need special assistance. While businesses

have made progress in accessibility, whenever possible, it is advisable for

parents to visit in advance.

Children who look " different " or behave in " unusual " ways are

likely to attract attention in a restaurant. Any family that includes a child

likely to attract attention such as staring, pointing or questioning by other

diners needs to be prepared. Usually, other people are curious and/or

uncomfortable. While another person's discomfort is that individual's " problem, "

families need to discuss such situations in advance and decide how they want to

respond. For some families, this aspect of dining out may require the most

planning and even rehearsals.

Copyright © Stanley Klein, 2007,

http://www.disabilitiesbooks.com/

Top 10 Autism Research Events

To remind ourselves of our progress and focus us on the

many positive developments in autism, the Autism Speaks' Scientific Advisory

Council has released a list of the Top Ten Autism Research Events of 2007. This

list spotlights some of the most significant happenings in the world of autism

research in 2007 - the events that now lead us into 2008. Read more.

We hope you find this newsletter useful. Feel free to

pass along ideas for future articles on issues you would like to read about in

this newsletter. If you think this information may be of use to someone you

know, please forward this e-mail by clicking the " Forward email " link below.

For permission to reprint any of these articles just contact the specific

author.

Best regards,

Naseef, Ph.D.

www.alternativechoices.com

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