Archive for the ‘Success Stories’ Category

Muslims, Methodists and Me

September 13, 2013

 

PEACE

 

I have had a fairly broad religious education. I grew up in the 1950s in a predominantly Jewish neighborhood, and played primarily with Jewish friends as a young child.  In fifth grade, I had the privilege of being admitted to an independent girls’ school, where I helped fill the quota of two spots allotted to Jewish students.  When I moved away five years later, my space went to another Jewish student.  In my Episcopal high school, I attended chapel daily, sang in the choir, and still know three verses to “Onward Christian Soldiers.” In graduate school at a Jesuit college, I met my first nun. I’ve studied both the old and new Testaments, and can recite many psalms and Biblical passages.

However extensive my experiences, I was not prepared for the profound religious connections I had in 2013.  This year I was embraced, both spiritually and physically, by two amazing groups: Muslim parents in Kuwait launching a center for their young adult children with disabilities and a Methodist ministry sponsoring an autism conference closer to home.  If you have been following my blog, you know about the former. The latter occurred this summer on the top of a mountain at a heavenly place called Jumonville, a retreat center an hour from Pittsburgh, where, on a clear day, you can see three states!

“Do they know you’re Jewish?” was one of the first questions many people asked when I told them about my invitations to go to Kuwait and be the keynote speaker at this year’s Autism Initiative.  “I think so,” I said, wondering if it mattered.  It didn’t.  No more than my being female, having green eyes, or being over 60.  In fact, it mattered so little that, at times, I felt closer to these warm, loving people than I did to many of my own faith.  What did matter was that regardless of our beliefs about God, we had the same basic values, philosophy and goals toward people with disabilities: that every individual is deserving of respect and love, and the opportunity to thrive, not simply survive.

What surprised me was that no one proselytized, and that many asked questions about Judaism, attempting to broaden their own religious education.  A few times I was embarrassed at how little I knew; most of all, I was proud of my heritage and its teachings that we all worship one God.  When I looked at the faces of the men and women in traditional garb in Kuwait, they looked indistinguishable from those of the religious Jews in my childhood neighborhood.  We were, if fact, distant cousins whose ancestors, many centuries ago, had wandered in the desert together.

The biggest message was that of acceptance.  Few I met were ashamed of or embarrassed by their kids.  No one watching the interactions among these families – mothers, fathers, grandparents, siblings, aunts, uncles and cousins – could have any doubt about the total inclusion of their relatives with special needs in the warm loving embrace of their families.

On the top of Jumonville Mountain I witnessed the same loving acceptance that I saw in Kuwait.  Prayer was a major healing tool in both locales, and science confirms its power.  While unconditional acceptance of our family is an enviable trait that many of us strive hard to attain, a tough question that kept nagging at my brain is this, “Are they maybe TOO accepting of their children as they are? And can unconditional acceptance interfere with seeking out therapies and treatments that can enhance potential?

I have spent a long career promoting a healthy diet, nutritional supplements, daily movement and exercise, glasses, environmental accommodations and more recently assistive technology.  These are, in many cases, life-altering interventions. I will never forget the non-verbal Kuwaiti young woman with autism who, given an iPad, was communicating within minutes. Then there is the untoilet-trained ten-year-old with alternating diarrhea and constipation, who had normal bowel movements after three weeks on a gluten- and casein-free diet.  And what about the sociable, verbal 30-year-old man with Fragile X syndrome who could not walk a straight line or catch a ball until fitted with prism lenses that corrected an eye turn?

Religion, no matter which one, and the latest medical science are indeed compatible partners.   I am grateful for these invitations, and in retirement look forward to continuing to delve into some of the most rewarding experiences in my life.

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Wonder

October 9, 2012

“I know I’m not an ordinary ten-year-old kid….I know ordinary kids don’t make other ordinary kids run away screaming in playgrounds.  I know ordinary kids don’t get stared at wherever they go… It’s like people you see sometimes, and you can’t imagine what it would be like to be that person, whether it’s somebody in a wheelchair or somebody who can’t talk.  Only, I know that I’m that person to other people… To me, though, I’m just me.  An ordinary kid.”

These are the thoughts of August (Auggie, to friends and family) Pullman, a fictitious boy who has endured 27 surgeries to correct extreme congenital facial anomalies of unknown origin.  Wonder is the remarkable first novel by R. J. Palacio that takes us with him to a private middle school, Beecher Prep, where he enters fifth grade after home-schooling for his elementary years.

The school is named for Henry Ward Beecher, a nineteenth century abolitionist defender of human rights. (How appropriate!) Beecher wrote that “greatness lies not in being strong, but in the right using of strength.”  “He is the greatest, whose strength carries up the most hearts by the attraction of his own.”

After Auggie’s parents make the difficult decision to send him off to Beecher Prep “like a lamb to the slaughter,” we learn about his heart and strengths through other, including his parents, sister, Olivia (Via, to friends and family), his principal, Mr. Tushman (yes, a little contrived), teachers and classmates.  Is it painful? Maudlin? A little. And, it is heartening and inspiring.

I have met thousands of families with kids like Auggie.  To them, their child with autism, cerebral palsy, or Down syndrome, is anything but ordinary.  Like Auggie’s parents, they see each and every child as a “wonder.”

This is beautiful story with many “talking points.”  It is book for all ages: one to be read to older elementary school kids, by middle and high school students, and by adults interested in human nature.  I recommend it strongly.

Treat the Child Not the Diagnosis

August 16, 2010

 

The first photos arrived. The baby didn’t look “quite right.”  But all newborns are “funny-looking,” I told myself.  Don’t be an alarmist.  Keep your mouth shut, Patty!

A long career diagnosing kids’ issues; this one was really hard.  I have known the parents and grandparents of this infant for many years.  Nope, just be quiet.

He’s now three months old; the family is coming for a visit.  Wow, I’ll have an opportunity to get a closer look. I take a deep breath and enter the house. He’s very cute in an unusual way.  A little agitated; maybe he just woke up.  His parents try to calm him; not an easy job.  Bouncing seems to help.  

Can I hold him?  Sure.  I look into his pale blue eyes.  They appear to be wiggling back and forth.  A nystagmus?  Maybe.  Not a good sign.  I try hard to get eye contact. I make goofy faces, crazy sounds, dangle my keys in front of his face.  No response.  I hand him back to his daddy. 

Back home, I wonder, “What’s going on here?”  Vision is something I know more than a little bit about.  Why are his eyes wiggling?  I should be able to engage a three-month- old easily.

Maybe Goggle can help.  I type in a few key words.  There it is, in a nano-second: a diagnosis of a rare congenital anomaly.  All the symptoms are present.

Do they know?  The father and both paternal grandparents are physicians.  Of course they must know suspect something.  Or do they?

Now I have an ethical dilemma. I recognize the need to move quickly, know the importance of early intervention. If therapies start NOW, this little guy has a chance to maximize his vision and other abilities. 

With whom do I share my concerns? Maybe a loving great aunt, who supports my work. Perfect! She relates my perhaps premature diagnosis to her brother, the other grandfather   Now the dilemma is his.  He calls the doctor grandfather. No, he has not heard of this particular pathology, but he will ask his friend the ophthalmologist.  

A call back.  No, the diagnosis is faulty, because the baby has no nystagmus. What was it I saw, then?  Maybe it was intermittent, occurring only when he was tired.

Sit tight.  Baby boy goes for his four-month check-up.  The pediatrician has some serious concerns. He sees a nystagmus, makes grave conjectures about its source: a brain tumor?

Off to a pediatric ophthalmologist.  In another nano-second, my Google diagnosis is confirmed.  Prognosis unknown.  What to do now?  Wait and see!  Return in three to six months.  WHAT?  Waste valuable time.  Not acceptable!

The calls and emails begin.  First the grandfathers. How many cases of this rare condition have I seen?  NONE!  How did I diagnose it then? 

Google!  Then the grandmothers.  How did I know? I saw a baby with symptoms that I didn’t like. Are there any experts nearby who can help? Yes, I know two special people in the same town where they live!

Treat the child, not the diagnosis!  For over 40 years, that has been my mantra.

First stop, a developmental optometrist. Both eyesight and vision can be elicited with lights and other novel instruments.  Visual stimulation jump-starts some movements. She offers a positive prognosis, and a home program of visual, motor, and other sensory stimulation. Within a short time, he is responding with laughter and relatedness.  Great signs!

Next stop, a reflex expert.  Another home program. Keep stimulating his reflexes passively. Give him lots of “tummy time.” Within  a few days he can almost turn over. 

More calls.  The parents relate their gratitude and grief.  Instead of “wait and see” they now have hope and an action plan. They’re “on the case.” Not the scenario they planned, but one they can handle. In addition to the private experts, they have connected with a multi-disciplinary early intervention center and their local school system.  Perfect!  I encourage lots of “tummy time” and movement.

Still many questions. How well does he see?  Would some lenses, prisms or highly controversial surgery help him? What about further testing? A genetic work-up? Nutrition?  He is still on only breast milk. Should it be supplemented?  Will he be okay cognitively?  These are all unknowns for now.    

Bottom line. The baby’s diagnosis is just a label. No matter what the name for his condition, I would have sent this young couple to the same two experts. No matter where they lived, I could refer them to top professionals.  All of us have the same goal:  treat possible causes, not symptoms.  Use a developmental, not pathological approach. Stay positive. Work with strengths to enhance weak areas. 

As they recover from the initial shock, they will most likely need some psychological support. They have a child with a diagnosis, a possibly devastating reality for high achievers. They don’t know as I do that this outcome is an opportunity for them and their family to learn and grow.  They are unaware of the miracles that can occur. I am grateful that they have the love, time, money and other resources to do everything possible. And to start at only four months.  What a luxury!

Temple Grandin: A Real Inspiration for People with Autism

July 23, 2009

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Yesterday I had the pleasure of hearing Temple Grandin speak. Thank you to Community Health Connections for bringing her to Pittsburgh.  I have attended Temple’s talks a half dozen times over the past 20 years, and each time I am amazed at how she continues to develop her skills. 

As arguably the world’s most accomplished adult with autism, Temple spoke with minimal notes and a high level PowerPoint presentation for almost two hours.  She was funny, irreverent, passionate and articulate.  How awesome is that, given that once she was a non-verbal, temper-driven child who sought solace in her relatives’ cattle brander to comfort herself? 

While pacing back and forth and waving her arms at times, Temple covered a good number of subjects:

  • How imprecise and meaningless labels are in helping those with autism
  • How “brains with problems” have sensory issues that sometimes look like “bad behavior. Maybe it’s those flickering lights, memory of the sound of a fire alarm or an itchy t-shirt.
  • How medical problems such as constipation, toothaches and yeast infections can also cause behavior problems.
  • Helpful accommodations for those with visual and auditory processing problems such as using colored paper or tinted/prism lenses, incandescent instead of fluorescent light bulbs, and wearing a hat.
  • Why we have to return to the practice of expecting even our most disabled children to take turns and do chores. Play board games and walk the dog, she advised.
  • Why hobbies and clubs are essential for learning social interactions. Chess, rockets, video games give kids something to talk to each other about.
  • Why she prefers aerobic exercise, deep pressure, special diets and omega 3 fats to medications with untold side effects. She is now taking probiotics and EFAs in addition to her “old-fashioned” meds for anxiety. 
  • The differences among the different classes of drugs, and why she is opposed to labeling and drugging very young children.
  • Possible successful careers for individuals at both ends of the spectrum.

Temple believes that too many of today’s teens and young adults with Asperger’s  are unemployed and unemployable because they have not had the advantages she did.  While she hated what she calls her “Miss Manners” lessons, she now recognizes their role in teaching her not to swear, make fun of overweight people, dress neatly, and chew with her mouth shut.  She related that she was over 30 before she understood why she had to so something to please others.

If you are unfamiliar with Temple’s story, I strongly recommend reading Emergence: Labeled Autistic, her early story, and Thinking in Pictures, written later in life.  Her latest biography is The Way I See It:  A Personal Look at Autism & Asperger’s.  Her love of animals, which led to her career as the world’s foremost animal handler, is palpable in her Animals in Transition and her newest book, Animals Make Us Human.  More information on these and her work are available at www.grandin.com.

Thank you, Temple for all you do to help those with autism.  Giving you a copy of my book EnVISIONing a Bright Future, and shaking your hand yesterday was a real thrill.  After I unthinkingly and spontaneously extended my hand, I did not know whether to withdraw it quickly or wait.  When she took it and gave me a hearty shake, I thought, “WOW!” What a long road she has traveled!

 

Giving and Getting

January 4, 2009

Owner wrote:

Giving, Getting and Gratitude 

During the holidays, our thoughts turned to the three “G”s: giving, getting and gratitude. When we sat down to our Thanksgiving dinner, many of us declared our gratitude for the abundance in our lives. In December, we showed our thanks by giving gifts to those we love.

Here are some ways that families of children with developmental delays and those working with them can make the three G’s special in 2009.  Give:

The Gift of Laughter

My life is full of females. I am working with a several young women on finding their passion, hosting a female exchange student, and just returned from a wonderful visit with my daughter and two-year-old granddaughter. Why would I fit noisy girls into an already full life? Because they are gifts. “My girls” give me the intangibles of laughter and fun. Children of all ages and abilities make us laugh.  Although some days it seems we only give to them, they too give us so much to laugh about. The healing power of laughter cannot be under-estimated. Laughter jogs your insides, releases endorphins and is definitely the best medicine. 

The Gift of Yourself

  • Mentor – Helping someone learn something new, find herself and become self-reliant is of the most rewarding experiences you can have.  The gift of mentoring is almost selfish. I believe that the mentor gets much more than he or she gives.
  • Volunteer – Volunteerism offers so many opportunities. Go to www.volunteermatch.org  to see the range. Even our youngest, most disabled kids can participate. Make volunteering a family tradition. One family I know works in a soup kitchen every Thanksgiving. If your schools require community service hours for graduation, make sure the activity is personally meaningful.

 The Gift of Time 

One of the best gifts we can give is unconditional time. Time is a precious, non-renewable resource, and wasting it can be regrettable. 

  • Spend time, not money – Remember the smells of Christmas cookies, paper mache, and candles burning. These are unforgettable memories that are stored in our senses forever. Give someone a coupon for an hour spent listening or playing a game of checkers. Give a teacher a break by chaperoning a field trip. Give kids a shared activity of their choice without cell phone interruptions. 
  • Wait on Academics – At this time of year educators may ask parents to give a child with delays “the gift of time.”  This aphorism means “wait another year before kindergarten or first grade.” Those who have done it will tell you it is the best decision they ever made!

The Gift of Philanthropy

The Council of Foundations www.thegivingfamily.org  offers a book entitled The Giving Family, by Susan Price, which recounts ways families of all means can instill the value of helping others. With an estimated $12 trillion transferring into baby boomers pockets from their parents’ estates in the next 20 years, family foundations are possible. Price recommends engaging children in giving at an early age by

  • Holding a Family Meeting – Discuss allocation of designated funds and let each family member suggest a favorite charity. Consider the arts, religion, science, drug abuse, hunger, environment, animal welfare or women’s rights.
  • Engaging Grandparents – Ask your parents to collaborate with your children about how they are contributing to their futures.  Offer matching funds for kids’ contributions with money earned from chores and allowances.
  • Using Celebrations – Many young men and women are celebrating their b’nai mitzvahs by collecting money for charity instead of receiving unnecessary trinkets. Creative ideas I had heard about include a sponsored walk around the world, donations to a group providing educational scholarships to needy, bright minority students and an investment club. With the estimated $2,500 spent on gifts, one father leveraged that amount into $500,000. The kids then decided where the money should go.
  • Giving Globally – Although, in general, giving to local agencies make it easier for kids to see results, here is one special international non-profit I love. Heifer International www.heifer.org allows giving families to purchase a gift animal or seedling that helps those less fortunate become self-reliant. For as little as $10, you can choose among ducks, goats, geese, chicks, pigs, honeybees and other animals from Noah’s ark. Last year my daughter gave everyone a share of a Knitting Basket: two llamas and two sheep famous for their income-producing wool.  Over time this gift multiplies to help entire communities break free from the grip of poverty and hopelessness.

 The Gift of Letting Others Give to Us

When we let others give to us and accept their generosity graciously, we give them a gift in return. Thank you all for giving so much to DDR. I am so grateful for all I have learned from you. Your year-end gifts are most appreciated.  Rest assured that we will use them to help families find the best help for their children. Happy New Year!

 

 

A Thanksgiving Lesson in Diet and Nutrition

December 16, 2008

Owner wrote:

A Thanksgiving Lesson in Diet and Nutrition 

Thanksgiving with my family was a glut of gluten, dairy and sugar.  “Patty, you bring the vegetables, because you’re the only one who will eat them anyway,” my cousin said.  So I cooked up some organic Brussels Sprouts and green beans.    Llouise, our wonderful DDR newsletter designer provided me with a new quick and delicious recipe for the mini-cabbages.  I cut them thinly and sautéed them in a bit of oil with lots of garlic until they were bright green, added some organic chicken broth and let them simmer for about 5 minutes.  A little lemon juice, and voila:  delicious!  The green beans went into the steamer and were topped with toasted almonds. 

You can guess the rest of the dinner:  a golden brown Butterball turkey complete with pop-up button, mashed potatoes, gravy, sweet potatoes with marshmallows, and stuffing.  I cringed at the origins of each, which were confirmed by the jars, cans and wrappers on the kitchen counter. 

The next day, a visiting relative complained about her chronic arthritis for which she had received several cortisone shots, and was taking a strong prescription pain killer.  I asked if she would consider some dietary changes that could possibly relieve her pain. I reminded her that several years ago when she was experiencing digestive problems that a wheat-free diet had not only fixed her tummy issues, but had resulted in considerable weight loss.  She had stopped it “because it was too hard!”  Now that she was in pain, she was willing to try again. 

I took a more complete history this time.  Knowing that she ate a daily salad for lunch I asked her what was in it, and if she ate it EVERY single day.  Yes, she did, and it included tomatoes, green, yellow and red peppers, topped with green olives stuffed with pimentos, and accompanied by potato chips. I related that these ingredients are all members of the nightshade family, and cousins to belladonna or the deadly nightshade, a plant whose leaves, berries and roots contain atropine, a poison that can kill those who consume it.  Also interesting is that tobacco is another member of the nightshade family, and the relative in my case study smoked for many years.  Did one addiction lead to another?

If nightshades don’t kill you, they can make you hurt. How? By causing inflammation. Some other known side effects are vision problems, confusion, and yes…sore joints. According to the Arthritis Nightshades Research Foundation (www.noarthritis.com) both scientific research and anecdotal evidence support nightshade avoidance. 

My relative is now nightshade- and wheat-free for two weeks.  Her results are extremely encouraging. On a scale of 0-10, she rated her pain without medication a 9 during Thanksgiving.  She now estimates her pain at a 1, and is medication-free, hurting only slightly in one hip when descending stairs.  A bonus is that she has lost 10 pounds!  She is also taking some vitamin supplements and natural anti-inflammatories. 

Bottom line: Approaches we have found helpful in autism and related disorders also work for other health issues.  Before reaching for prescription medications:

  1. Investigate possible causes and eliminate exposures
  2. Reduce inflammation with natural anti-inflammatories

Will keep you posted.