The Invisible Woman

(Reposted from May 2010)

I really needed to hear this today.   Thought I’d share.   It’s a very, very powerful message.

http://www.youtube.com/watch?v=YiofUjp1SAA

Keep building! 

Becki

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Published in: on May 9, 2011 at 6:15 pm  Comments (2)  
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Unwritten

It’s been a difficult couple of weeks around here.  Tony is officially done with high school and we are taking a couple of days to process that.  On Monday he starts his “college orientation” (that’s what we’re calling it — because, logically, that’s what his big brother did) for his transitional program which he will be in until he’s 21 yrs old.  We are excited, yet anticipating change always makes for a tense environment here.  Although he’s ready for a new routine, sadness overwhelms me at times that high school is over for him and it just wasn’t ‘normal’.  I realize these are my issues, not his, as we stretch into the new routine, paving our way into the unknown.  Who knows where this will take him.  And like most high school seniors, his life is still unwritten.

I’m sharing some lyrics to one of my favorite songs from a few years ago.  Just heard it on the radio this morning and was just so appropriate.  Just another sign that the good Lord is speaking to me, telling me that it’s all going to be ok.  The song could be interpreted in many different ways — if you really stop to think about it.   Maybe it’s talking about our kids with autism and how they can’t get the words from inside their heads to their lips.  They can’t explain what they’re thinking.  They can’t ‘put it into words’…  “drench yourself in words unspoken”… that’s just how my Tony lives.  There’s so many words up in his head and so many conversations going on sometimes… yet he can’t converse.  I can’t imagine how frustrating that is.  Is he waiting for this to go away and be fixed?  or has he already embraced it and is “living his life with arms wide open”?

Maybe it’s talking about us parents — who’s futures are so undefined, unwritten.  It’s like the artist is saying:  go live your life.  Embrace it with arms wide open.  It is what it is.  It’s just beginning.  Go create your story.  No one else can do it for you.  Release your inhibitions – stop letting other things hold you back.  Stop worrying about what everyone else is thinking — just lay it out there and embrace it.  This is YOUR gift.  Go make it worthy.

And that goes for anything –  your job, the business you just started, your kids, your spouse or even your ‘self’ — or your life with autism. 

Below are the lyrics written and sung by Natasha Bedingfield. 
 
You can also click this utube link to hear it played: http://youtu.be/TtGY4G7II6s
 
 
“I am unwritten
Can’t read my mind, I’m undefined
I’m just beginning
The pen’s in my hand, ending unplanned
 
Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words
That you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inhibitions
Feel the rain on your skin

No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips

Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

I break tradition
Sometimes my tries are outside the lines
We’ve been conditioned
To not make mistakes, but I can’t live that way, no

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words
That you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inhibitions
Feel the rain on your skin

No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips

Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
Feel the rain on your skin

No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips

Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words
That you could not find

Reaching for something in the distance
So close you can almost taste it
Release your inhibitions
Feel the rain on your skin

No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips

Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
Feel the rain on your skin

No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips

Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins
The rest is still unwritten

The rest is still unwritten…”

(Copied from MetroLyrics.com)
 
Just some thoughts playing in MY head…
 
Becki
 

The Talk

Today on The Talk a fairly new CBS Talk Show, they continue to shine a light on Autism A­wareness Month. On the show they focused on some amazing teens who have autism and are role models in their community.­­

One such teen, Carly Fleischmann, literally took my breath away.  A hurried and very deep sob came from no where when I watched her “talk” via computer program about what life was like as a teenager with autism.  I read another autism blog recently that talked about  parents having PTSD (post traumatic stress disorder) and reliving the reality of this disease day in and day out.  I haven’t been able to get that post out of my mind and have shared it with a few friends.  I do believe that at moments like these, I relive — or recreate — the sadness and trauma that one faces when given a lifelong diagnosis of autism.  And the deep, deep desire to help him reach his potential… whatever that may be.

In her blog Mom-NOS states:

“…The physical reaction to loud noises.  The sleepless nights.  The ceaseless anxiety.  The sensory overload.  The fear.

Not their children:  Them. (the moms)

The diagnosis resonated – not for everyone, but for some.  I watched as faces changed, as moms considered – perhaps for the first time – that their feelings and their troubles were not the cause of some personal inadequacy or weakness or inability to cope, but were instead the reasonable response of a reasonable person who had been living with unreasonable demands without reasonable support for an unreasonable length of time.  I watched as they looked at each other – but YOU – so strong – so together – YOU feel this way, too?

It was a powerful moment.

I walked away thinking that it was a moment that should be shared – that there are probably many parents of autistic children who think that their pain, anxiety, and feelings of hopelessness are theirs alone, and, worse, are an indication that they are just not capable of parenting their children.  So, I went home and started Googling.  I landed on a page from the National Institutes of Health that lists the symptoms of Post-Traumatic Stress Disorder.  The description below belongs to the NIH, but the bolding is mine; it highlights the symptoms that I heard my friends identify in themselves:

Symptoms of PTSD fall into three main categories:

1. Repeated “reliving” of the event, which disturbs day-to-day activity

  • Flashback episodes, where the event seems to be happening again and again
  • Recurrent distressing memories of the event
  • Repeated dreams of the event
  • Physical reactions to situations that remind you of the traumatic event

2. Avoidance

  • Emotional “numbing,” or feeling as though you don’t care about anything
  • Feelings of detachment
  • Inability to remember important aspects of the trauma
  • Lack of interest in normal activities
  • Less expression of moods
  • Staying away from places, people, or objects that remind you of the event
  • Sense of having no future

3. Arousal

  • Difficulty concentrating
  • Exaggerated response to things that startle you
  • Excess awareness (hypervigilance)
  • Irritability or outbursts of anger
  • Sleeping difficulties

You also might feel a sense of guilt about the event (including “survivor guilt”), and the following symptoms, which are typical of anxiety, stress, and tension:

  • Agitation, or excitability
  • Dizziness
  • Fainting
  • Feeling your heart beat in your chest (palpitations)
  • Fever
  • Headache
  • Paleness

It’s important to note that PTSD is characterized by symptoms that persist for more than a month – and that the items I’ve highlighted here are those that have been persistent and unmitigated for my friends.  Symptoms resolved within a month – those I haven’t addressed here – are considered manifestations of Acute Stress Disorder (and, no, the irony that it shares its acronym with Autism Spectrum Disorder is not lost on me).”

———————————–

For you other autism moms reading this blog, I sometimes feel this way too.  I do. 

What brought me to such deep tears so quickly was the fact that Carly talked so eloquently through a computer.  Her thoughts and her comments were so ‘normal’.  And that was her point!  She said that because she may not look normal on the outside, people are quick to judge that she’s not smart.  And because she can’t articulate her thoughts through the spoken language, she is often misjudged.  

She is an amazing gal and I’m so intrigued with her story because she CAN communicate and tell the world just what it’s like to be in a body/mind with autism. 

What would my Tony be like if he could really communicate?  What would he say?  What would he tell me?  I would walk a thousand miles to be able to just have a conversation with him about what he’s feeling and why he gets so frustrated at times. 

Maybe he could answer the one question that’s been burning on my mind since his diagnosis 16 1/2 years ago…   why did this happen?  

Tony 19 mos

 

 

 

 

 

 

 

or maybe he’d tell me that the ‘why’  just doesn’t matter…

Becki

Tony turns 18

It’s always hard for a parent to celebrate milestone birthdays with their kids — like turning 18 yrs old — because deep down, we still see them as our adorable little munchkins.   It would be so wonderful to be able to scoop him up in my arms, squeeze his cheek next to mine in front of the mirror and say “Who’s so handsome?”  —  “Me am!”  he say smiling proudly. 

Except there will be no scooping up a 190 pound- 6 foot- 18-year-old this year. 

Instead, I had asked Tony months ago to think about what his 18-year-birthday-wish would be.  And I would try hard to make that wish come true.

Tony turned 18 yrs old on St. Patrick’s day.  We’ve been talking about it for some time now, and his anxiety was climbing.  He was so excited to wake up that day.  He rushed into my bathroom and looked straight into the mirror saying “Bigger?”   He shower, shaved, and got all dressed up in green.  I love it when he understands milestones.

His wish this year was as simple as last year.  He only wanted one thing.  He wanted to go stay at a hotel.  AND he wanted to bring Beau.  

Simple, right?  Well… kind of.

It took a few phone calls to find a hotel that not only accepts pets — but one that would accept our 100 pound lab!   We found one not too far from our house.  I booked two adjoining rooms, so Tony feel grown up and independent.  I also wanted to make sure he had his own space to set up his DVD’s and books, and have his snacks,  yet not be disrupted by any outside noises.  It was just how he liked it.  A perfect night.

Beau settled in pretty quickly — he got a little TOO comfortable, as you can see.   But all in all, it was a great night.  Just Tony, his dog, his family (in the next room) and his new DVD collection.   And as requested, we picked up Don Pablos chips and salsa, a chicken fajita, popcorn and a gluten-free chocolate cake.

So while Tony and Beau settled into their own room to watch his new World War I, World War II, and Classic Hollywood DVDs, the rest of us were in the adjoining room watching a Harry Potter marathon.  What a great way to spend a Saturday night together… well, kind of together.  🙂

Becki

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.

   

 

Translation: 

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!  🙂

Becki

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. 

Becki 

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

Becki

 

What Siblings Would Like Parents and Service Providers to Know

This post is from the Sibling Support Project (www.siblingsupport.org) 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
206-297-6368
donmeyer@siblingsupport.org
www.siblingsupport.org

 

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

The Toxic Origins of Autism and the Gluten Free Diet

I found an article from Dr. Mercola a few years ago called “The Toxic Origins of Autism”.  (http://articles.mercola.com) I’ve read it quite a few times, but it states three main factors or origins for autism: 

Autoimmune Disease:  Parents of autistic children, particularly mothers, tend to have a greater rate of autoimmune diseases.  Things like food allergies, chronic fatigue syndrome, fibromyalgia, and other, more subtle symptoms. 

Gene Mutations: Children with autism tend to have more gene expressions that are inefficient for detoxification.  These so-called “mutations” tend to be unpredictable and every autistic child’s set is slightly different along with their own unique expression of autism.

Chronic Infections (& Lyme Disease):  Chronic infections like Lyme disease are extremely common in autistic children, and may even be causing the gene mutations… Typically, the child gets the disease not from a tick bite but from their mother, who may be a silent carrier of the illness.  Ironically, the major symptom of Lyme disease in a child is not autism, but rather hyperactivity, learning disorders, depression, early puberty, and slight delays in motor development.. and the symptoms can actually stay silent or nearly silent for up to 20 years. 

Hmmm….

It goes on to state that the diet should be tailored.. avoiding pasteurized milk, MSG, High Fructose Corn Syrup… basically all processed food.  

This got me thinking over and over again that we should give the Gluten Free diet another try.  We had tried it when Tony was 4 yrs old.  Joey was a newborn and I wanted to try this “new” diet – everyone was talking about on the autism chat rooms and in the research on the autism sites.  However, that was 13 years ago!  We had to shop at a Co-Op about 45 minutes away.  There were no pre-packaged products and you had to use “funny” flour and “different” ingredients.  It was just too much to take on with a 2 month old, a 4 year old w/ autism, and a 6 1/2 year old… which, at the time, I had to admit I was already overwhelmed.  However, I’ve always kept it in the back of my mind and have always thought that someday we would master this way of eating — all of us!

Fast forward to November of 2009.  Elisabeth Hasselbeck is on “The View” talking about her new book “The G Free Diet – A Gluten-Free Survival Guide”.  She has Celiac Disease and has to eat only Gluten Free (GF) foods.  She said her book was an easy way to get started – a beginner’s guide.  Soon after a very dear friend from college mailed me the book, knowing that I had wanted to learn more.  I read it in two days and after a very bad episode at school and at home (one of Tony’s meltdowns), we decided to start the very next day. 

I told my husband that I would take it meal by meal, so that I wouldn’t feel overwhelmed.  We’d just take it slow and  learn as we go.  Well.. that was 3 days before Thanksgiving of last year.  I’m very proud to report that Tony is completely Gluten Free — and other than sneaking a few chocolate chip cookies at his cousin Elizabeth’s graduation party last spring — he has not deviated one bit.  (He later paid dearly for that choice — major stomach pains — and I’m sure he learned his lesson).  Here’s the best part:  Tony has lost 29 lbs!  He looks fantastic and I know he feels fantastic!  He’s never fought me on this — he’s adapted.   He’ll even go so far as to tell me “nope!  Can’t eat that – not gluten free!” when I’m trying to introduce a new food.  🙂   But once we say it IS gluten free, he usually will always eat the new food.  His IBS symptoms are gone.  His behavior has improved.  His sleeping patterns are better (not great yet, but better).  And his complexion is better.  I couldn’t believe how much GF food is available at our local grocery store!  It’s become a very popular way of eating and even local restaurants are offering GF options.  He still has pizza night (we found a great local pizza place that has GF pizza, and even some Godfather’s locations offer GF pizza, or we just buy the GF pizza crusts at Lakewinds or Whole Foods).   He still can have chips and salsa.  We just stopped all the processed junk food.  And yes, there was a definite detoxification period…. thrown in with the holidays, which were crazy enough that we barely noticed.  (ok… we did notice, but we got through it)  Was it the best time to cut out all convenient foods?  (No)  Do you realize that gluten (a wheat protein) is in just about EVERYTHING we eat in today’s society?  (Yes)  When was the last time we ate only things with ingredients we could pronounce?  (when I was growing up)  Without realizing it, we had let the food manufacturers dictate what we ate.  And we’d become literally addicted to their foods… again, without realizing it. 

Now, I know there’s a definite connection here between the food we eat and disease.  Nutrition has a direct impact on a child’s development.  And a growing body of evidence suggest that eliminating gluten from the diet can have a beneficial effect on children diagnosed with autism. 

(Quote from “The G Free Diet”)  “Still, the bottom line is this:  However inconvenient it might seem, however much resistance you might meet at your child’s school, or even in the pediatrician’s office, isn’t the GF diet at least worth a trial?   Don’t tell me this diet is hard — autism is hard!” 

I couldn’t agree more. 

Becki