On November first, 2010

Please join me

In shutting down Social Communication

For one day


No Twitter

No Facebook

No LOLs and OMGs


Just the quiet

That surrounds so many of our kids


A symbolic gesture

Of solidarity

And support

For those who struggle

Every day

To communicate


Raising funds and awareness across the globe

One person

At a time


Do you hear that?

The silence is deafening.





Recipe: Gluten Free Chicken & Rice Bake

This is Tony’s favorite meal — just an old family recipe modified to Gluten Free.     Yum!!

1 box GF cream of mushroom soup  (I use Pacific brand)

1 box GF cream of chicken soup

1 box GF cream of celery soup

½ cup water

½ c butter

1 ¼ c GF rice  (I use Uncle Ben’s whole grain instant rice)

*Combine soups, water and butter – heat until butter is melted.  Add rice.  Pour mixture into greased 9 x 13 cake pan, leaving about 1 cup out for later.  Add 4-6 boneless chicken breasts into cake pan.  Dribble the remaining soup mix over chicken pieces. 

*Bake at 300° for 3 hours  (covered = 2 hours, uncovered = 1 hour)

Published in: on October 29, 2010 at 10:00 am  Leave a Comment  
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Tony’s Christmas List

Not your typical Christmas wish list for your average 17-year-old.   But then again…  we aren’t looking for typical.  Just thrilled that he sat down on his own and made his ‘wish list’.   These are just things that will make him happy – things he can memorize, study, dissect, and explore. 

Just some simple DVD’s and books to add to his collection.  Then all will be good in his world.




DVD’s:  Beauty and the Beast, Toy Story 3, How to Train a Dragon, Shrek Forever After, Despicable Me, Planet 57, Batman Trilogy

Books:  Rock Stars Encyclopedia, The Times of the 20th Century

More DVD’s: Fantasia Double Feature

More Books:  The Second City SNL (Saturday Night Live), Guinness Book of World Records 2011

At least there’s plenty on the list for his birthday too!  🙂


Tony’s prayer

I found an old bookmark that my oldest son, Michael, made in grade school years ago for Grandparent’s Day.  It’s now next to Tony’s bed and he reads it nightly:

“There’s a Special Place In Heaven for Grandparents

Few can bring the warmth we can find in their embrace, And little more is needed to bring love then the smile on their face.

They’ve a supply of precious stories, yet they’ve time to wipe a tear, or give us reasons to make us laugh, they grow more precious through the years.

I believe that God sent us Grandparents as our legacy from above, to share the moments of our life, as extra measures of love.”

~author unknown

I can see that Tony is still processing his grandpa’s death.  It warms my heart to know that he is learning these coping skills and that he is thinking about his Grandpa Gene… 

You see, prayer is not tangible, you can not “see” it,  you have to “think” it.   And children with autism have a very hard time processing things that are not tangible.  This is a huge step!  Another life skill to add to the list… one that most of us simply take for granted. 


Gluten intolerance… anyone?

Up to 40% of Americans may suffer from gluten intolerance…Are YOU one of them?


“Gluten troubles were once thought to be a problem primarily for those with celiac disease. But recent research indicates that gluten-related disorders extend to a far broader population, and affect far more than the digestive system.

Lisa Stevens, 41, the bakery’s wholesale manager, spent years struggling with digestive issues before she learned she had a problem with gluten nearly four years ago: “I was always the little girl with the tummy ache,” Stevens recalls. But, as she grew older, her ills spread beyond her belly. In her 20s, she was plagued by debilitating headaches, joint pain and fatigue. “I could hardly get out of bed in the morning,” she says. “I was 25 but felt 85.”

She bounced from doctor to doctor with no diagnosis. Finally, a friend with celiac disease insisted Stevens experiment by cutting gluten from her diet. Within two weeks of going gluten-free, her stomach stopped hurting after meals  — a first. Within a few short months, her fatigue, joint pain and headaches all vanished. Testing confirmed her suspicion — gluten was the guilty party. But Stevens doesn’t have celiac disease; she has an intolerance to gluten, an increasingly common diagnosis.

As scientists chip away at the mountain of health problems caused by the modern American diet, a troubling finding is emerging. Gluten, present in our most popular grains, is being linked not only to celiac disease, an autoimmune disorder affecting one out of 100 Americans, but also to non-celiac gluten intolerance, which afflicts many millions more.”    Experience Life Magazine – November, 2010

Read the whole story here:   Gluten – The Whole Story



What Siblings Would Like Parents and Service Providers to Know

This post is from the Sibling Support Project ( and, in my opinion, is beautifully written. 

For more information about Sibshops, sibling issues, and their workshops, listservs and publications, contact:

Don Meyer 

Sibling Support Project

A Kindering Center program
6512 23rd Ave NW #322
Seattle, WA 98117


In the United States, there are over 4.5 million people who have special health, developmental, and mental health concerns.  Most of these people have typically-developing brothers and sisters.  Brothers and sisters are too important to ignore, if for only these reasons:

  • These brothers and sisters will be in the lives of family members with special needs longer than anyone.  Brothers and sisters will be there after parents are gone and special education services are a distant memory.  If they are provided with support and information, they can help their sibs live dignified lives from childhood to their senior years.
  • Throughout their lives, brothers and sisters share many of the concerns that parents of children with special needs experience, including isolation, a need for information, guilt, concerns about the future, and caregiving demands.  Brothers and sisters also face issues that are uniquely theirs including resentment, peer issues, embarrassment, and pressure to achieve.

Despite the important and life-long roles they will play in the lives of their siblings who have special needs, even the most family-friendly agencies often overlook brothers and sisters.  Brothers and sisters, often left in the literal and figurative waiting rooms of service delivery systems, deserve better.  True “family-centered” care and services will arrive when siblings are actively included in agencies’ functional definition of “family.”

The Sibling Support Project facilitated a discussion on SibNet, its listserv for adult siblings of people with disabilities, regarding the considerations that siblings want from parents, other family members, and service providers.  Below is a discussion of themes discussed by SibNet members and recommendations from the Sibling Support Project:

  1. The Right to One’s Own Life. Throughout their lives, brothers and sisters may play many different roles in the lives of their siblings who have special needs.  Regardless of the contributions they may make, the basic right of siblings to their own lives must always be remembered.  Parents and service providers should not make assumptions about responsibilities typically-developing siblings may assume without a frank and open discussion.  “Nothing about us without us”— a phrase popular with self-advocates who have disabilities — applies to siblings as well.  Self-determination, after all, is for everyone — including brothers and sisters.
  2. Acknowledging Siblings’ Concerns. Like parents, brothers and sisters will experience a wide array of often ambivalent emotions regarding the impact of their siblings’ special needs.  These feelings should be both expected and acknowledged by parents and other family members and service providers.  Because most siblings will have the longest-lasting relationship with the family member who has a disability, these concerns will change over time.  Parents and providers would be wise to learn more about siblings’ life-long and ever-changing concerns.
  3. Expectations for Typically-Developing Siblings. Families need to set high expectations for all their children.  However, some typically-developing brothers and sisters react to their siblings’ disability by setting unrealistically high expectations for themselves — and some feel they must somehow compensate for their siblings’ special needs.  Parents can help their typically-developing children by conveying clear expectations and unconditional support.
  4. Expect Typical Behavior From Typically-Developing Siblings. Although difficult for parents to watch, teasing, name-calling, arguing and other forms of conflict are common among most brothers and sisters -– even when one has special needs.  While parents may be appalled at siblings’ harshness toward one another, much of this conflict can be a beneficial part of normal social development.  A child with Down syndrome who grows up with siblings with whom he sometimes fights will likely be better prepared to face life in the community as an adult than a child with Down syndrome who grows up as an only child.  Regardless of how adaptive or developmentally appropriate it might be, typical sibling conflict is more likely to result in feelings of guilt when one sibling has special health or developmental needs.  When conflict arises, the message sent to many brothers and sisters is, “Leave your sibling alone.  You are bigger, you are stronger, you should know better. It is your job to compromise.”  Typically-developing siblings deserve a life where they, like other children, sometimes misbehave, get angry, and fight with their siblings.
  5. Expectations for the Family Member with Special Needs. When families have high expectations for their children who have special needs, everyone will benefit.  As adults, typically-developing brothers and sisters will likely play important roles in the lives of their siblings who have disabilities.  Parents can help siblings now by helping their children who have special needs acquire skills that will allow them to be as independent as possible as adults.  To the extent possible, parents should have the same expectations for the child with special needs regarding chores and personal responsibility as they do for their typically-developing children.  Not only will similar expectations foster independence, it will also minimize the resentment expressed by siblings when there are two sets of rules — one for them, and another for their sibs who have special needs.
  6. The Right to a Safe Environment. Some siblings live with brothers and sisters who have challenging behaviors.  Other siblings assume responsibilities for themselves and their siblings that go beyond their age level and place all parties in vulnerable situations.  Siblings deserve to have their own personal safety given as much importance as the family member who has special needs.
  7. Opportunities to Meet Peers. For most parents, the thought of “going it alone,” raising a child with special needs without the benefit of knowing another parent in a similar situation would be unthinkable.  Yet, this routinely happens to brothers and sisters.  Sibshops, listservs such as SibNet and SibKids, and similar efforts offer siblings the common-sense support and validation that parents get from Parent-to-Parent programs and similar programs.  Brothers and sisters — like parents — like to know that they are not alone with their unique joys and concerns.
  8. Opportunities to Obtain Information. Throughout their lives, brothers and sisters have an ever-changing need for information about their sibling’s disability, and its treatment and implications.  Parents and service providers have an obligation to proactively provide siblings with helpful information.  Any agency that represents a specific disability or illness and prepares materials for parents and other adults should prepare materials for siblings and young readers as well.
  9. Sibs’ Concerns about the Future. Early in life, many brothers and sisters worry about what obligations they will have toward their sibling in the days to come.  Ways parents can reassure their typically-developing children are to make plans for the future of their children with special needs, involve and listen to their typically-developing children as they make these plans, consider backup plans, and know that siblings’ attitude toward the extent of their involvement as adults may change over time.   When brothers and sisters are “brought into the loop” and given the message early that they have their parents’ blessing to pursue their dreams, their future involvement with their sibling will be a choice instead of an obligation.  For their own good and for the good of their siblings who have disabilities, brothers and sisters should be afforded the right to their own lives.  This includes having a say in whether and how they will be involved in the lives of their siblings who have disabilities as adults, and the level, type, and duration of involvement.

10.  Including Both Sons and Daughters.  Just as daughters are usually the family members who care for aging parents, adult sisters are usually the family members who look after the family member with special needs when parents no longer can.  Serious exploration of sharing responsibilities among siblings — including brothers — should be considered.

11.  Communication. While good communication between parents and children is always important, it is especially important in families where there is a child who has special needs.  An evening course in active listening can help improve communication among all family members, and books, such as How to Talk So Kids Will Listen and Listen So Kids Will Talk and Siblings Without Rivalry (both by Adele Faber and Elaine Mazlich) provide helpful tips on communicating with children.

12.  One-on-One time with Parents. Children need to know from their parents’ deeds and words that their parents care about them as individuals.  When parents carve time out of a busy schedule to grab a bite at a local burger joint or window shop at the mall with their typically-developing children, it conveys a message that parents “are there” for them as well and provides an excellent opportunity to talk about a wide range of topics.

13.  Celebrate Every Child’s Achievements and Milestones. Over the years, we’ve met siblings whose parents did not attend their high school graduation — even when their children were valedictorians — because the parents were unable to leave their child with special needs.  We’ve also met siblings whose wedding plans were dictated by the needs of their sibling who had a disability.  One child’s special needs should not overshadow another’s achievements and milestones.  Families who seek respite resources, strive for flexibility, and seek creative solutions can help assure that the accomplishments of all family members are celebrated.

14.  Parents’ Perspective is More Important than the Actual Disability.  Parents would be wise to remember that the parents’ interpretation of their child’s disability will be a greater influence on the adaptation of their typically developing sibling than the actual disability itself.  When parents seek support, information, and respite for themselves, they model resilience and healthy attitudes and behaviors for their typically-developing children.

15.  Include Siblings in the Definition of “Family.” Many educational, health care, and social service agencies profess a desire to offer family-centered services but continue to overlook the family members who will have the longest-lasting relationship with the person who has the special needs — the sisters and brothers.  When brothers and sisters receive the considerations and services they deserve, agencies can claim to offer “family-centered”— instead of “parent-centered”— services.

16.  Actively Reach Out to Brothers and Sisters. Parents and agency personnel should consider inviting (but not requiring) brothers and sisters to attend informational, IEP, IFSP, and transition planning meetings, and clinic visits.  Siblings frequently have legitimate questions that can be answered by service providers.  Brothers and sisters also have informed opinions and perspectives and can make positive contributions to the child’s team.

17.  Learn More About Life as a Sibling. Anyone interested in families ought to be interested in siblings and their concerns.  Parents and providers can learn more about “life as a sib” by facilitating a Sibshop, hosting a sibling panel, or reading books by and about brothers and sisters.  Guidelines for conducting a sibling panel are available from the Sibling Support Project and in the Sibshop curriculum.  Visit the Sibling Support Project’s website for a bibliography of sibling-related books.

18.  Create Local Programs Specifically for Brothers and Sisters. If your community has a Parent-to-Parent Program or similar parent support effort, a fair question to ask is: why isn’t there a similar effort for the brothers and sisters?  Like their parents, brothers and sisters benefit from talking with others who “get it.”  Sibshops and other programs for preschool, school-age, teen, and adult siblings are growing in number.  The Sibling Support Project, which maintains a database of over 200 Sibshops and other sibling programs, provides training and technical assistance on how to create local programs for siblings.

19.  Include Brothers and Sisters on Advisory Boards and in Policies Regarding Families. Reserving board seats for siblings will give the board a unique, important perspective and reflect the agency’s concern for the well-being of brothers and sisters.  Developing policies based on the important roles played by brothers and sisters will help assure that their concerns and contributions are a part of the agency’s commitment to families.

20.  Fund Services for Brothers and Sisters.  No classmate in an inclusive classroom will have a greater impact on the social development of a child with a disability than brothers and sisters will.  They will be their siblings’ life-long “typically developing role models.”  As noted earlier, brothers and sisters will likely be in the lives of their siblings longer than anyone — longer than their parents and certainly longer than any service provider.  For most brothers and sisters, their future and the future of their siblings with special needs are inexorably entwined.  Despite this, there is little funding to support projects that will help brothers and sisters get the information, skills and support they will need throughout their lives.  Governmental agencies would be wise to invest in the family members who will take a personal interest in the well-being of people with disabilities and advocate for them when their parents no longer can.  As one sister wrote:  “We will become caregivers for our siblings when our parents no longer can.  Anyone interested in the welfare of people with disabilities ought to be interested in us.”

The Sibling Support Project.  All rights reserved.

About the Sibling Support Project

The Sibling Support Project, believing that disabilities, illness, and mental health issues affect the lives of all family members, seeks to increase the peer support and information opportunities for brothers and sisters of people with special needs — and to increase parents’ and providers’ understanding of sibling issues.

Our mission is accomplished by training local service providers on how to create Sibshops (lively community-based for school-age brothers and sisters); hosting workshops, listservs, and websites for young and adult siblings; and increasing parents’ and providers’ awareness of siblings’ unique, life-long, and ever-changing concerns through workshops, websites, and written materials.

Based in Seattle since 1990, the Sibling Support Project is a national effort dedicated to the interests of over six million brothers and sisters of people with special health, mental health and developmental needs.

Grandpa Gene

I’ve often wondered how Tony would take a death in the family.  My father-in-law passed away on September 21st.  We had watched him suffer for years and we were all prepared… or so we thought.  He had been getting progressively worse.  We talked about what we’d do with Tony in this situation.  We wanted desperately for him to be able to say ‘good bye’ to Grandpa. 

We took Tony to the hospital the night before he died.  We were nervous, as we hadn’t ever brought Tony to the hospital before.  Lots of things ripped through our minds.   The fluorescent lighting (the humming makes him scream), the unpredictable noises from other people, the elevators, the smells, the cords and equipment, the beeping equipment, the computer screens, the “how would we escape if he started to scream” fear…  we thought of it all… in a matter of a few seconds.  That’s a ‘gift’, so to speak, that a parent acquires while raising a child with autism.  I call it crisis management with a twist — you never get to manage a crisis the same way.  Every situation is a mystery to unravel… to try to solve… to try to cope.

However, on that peaceful night, Tony amazed us.  He walked through the hospital effortlessly.  When we got to Grandpa’s room, it was full of people,which normally would have been hard for him.  Tony sat down by his big brother Michael.  That alone usually upsets him.   Not that fact that he saw Michael — he adores Michael — but the fact that Michael comes and goes.  He no longer gets to see him every day, so the “change” is always a hard adjustment.  But not that night.  Tony held Grandpa’s hand and leaned in very close and stared.  He whispered something so sweet, so soft, that it made me sob.  I was the only one who could hear him.  He said “I’ll miss you  and I’ll see you again in heaven someday”.  Even today, when I think back, I’m still amazed.  I’m amazed that he understood.  I’m amazed that he remained calm.  And I’m really amazed that he talked directly to Grandpa Gene.

I shouldn’t be so surprised.  I mean, he HAS read the bible, and he loves to read biographies and life stories.  He knows our geneology better than anyone else in the extended family.  He probably can process death better than all of us. 

The next evening, Grandpa Gene died.  We were so happy that everyone got to say ‘good bye’.  We talked to Tony in great lengths about the process of the funeral and we decided to have a private viewing at the wake for Tony.  Again, he amazed us.  He was silent, he knelt and prayed, he kissed Grandpa and made the sign of the cross on his forehead.  I took some pictures from afar for him to process it more and we are making a scrapbook.

Through this whole process, we couldn’t have gotten through it all without the help of my Mom.  She literally dropped everything and came to stay with us for an entire week so I could be by Dave’s side in making the funeral preparations and helping his family with all the details.  I truly don’t know what we would have done without her.  Someone had to stay back with Tony — and she didn’t hesitate for a minute to come to our rescue.  That says a lot about her character.  It’s the kind of person I inspire to be.   So thank you, Mom…  I also want to thank my sister-in-law, Jess, who came to stay with Tony so my Mom could attend the funeral.  Jess is an occupational therapist and she came armed with activities.  Tony adores Jess.  They ended up taking a lot of pictures in the backyard — Tony posing with our dog, Beau — pictures we can use for his graduation.   

Funerals seem to bring out the very best in people.  We were amazed at those that took the time to come, or send a card, or an email even.  Every one of them touched our hearts.  But Tony touched our hearts the most.  It gave Dave and I a glimpse into his mind.  To know that he actually understands death is still humbling me.  To know that he knew enough to say good-bye… to know that he will forever memorize the visual of Grandpa’s face and his dash.   The dash between his life….   the dash that now defines his life.  I know Grandpa Gene’s legacy will live on… Tony will make sure of that. 

In loving memory of Eugene W. Becker  

September 26, 1928 — (dash) —  September 21, 2010