The Mona Lisa Syndrome

for Stephanie Ramos and Danieal Kelly



How many times do we hear from someone, "What's wrong with her?" Or how about, "What's her diagnosis?"

 Children are often the most curious and concerned. Often times they are guided away by an adult saying in a hushed tone, "she's different" or "don't stare, that's rude."  One time, a woman gave me "Miracle" water from Lourdes to heal her. It worked, too, because our survival is miracle.

The majority of the time, the encounters are somewhat pleasant driven by the best intentions.  Many are just naturally curious because they have a family or friend who "looks"or "acts" just like Elisabeth.  Sometimes they ask about her syndrome. In most cases, it's really the only time people acknowledge our child's presence.

Elisabeth  is absolutely beautiful.  She presents at a much younger age. So what do we do when we see the most  beautiful person in the world? Don't we usually acknowledge their presence with a greeting or smile?

With Elisabeth, I want people to ask her, to speak directly to her:  I love your hairstyle! I love those boots!

I love those flashy lights on your wheelchair!

Let's face it, life is too short to talk about diagnosis or therapy. I'd rather talk  about the 45 minutes it took putting nail polish on her nails so they match her top. Or, the 1 hour it took to fix her hair so it looks just like that actress from "Jane Austen's Book Club." Elisabeth loves the Bennet Sisters. Let's talk about Jane!

When I run into anyone curious, I generally pretend I don't hear their question. Instead,  I tell them her name and hope they'll come up to her directly saying, "Hello! Elisabeth! Where did you get those cool wheels on your chair?" or "I love that hair style. You look just like that actress in Jane Austen Book Club."

Once in awhile, this guy from church comes up to our daughter, and kneels down to make eye contact with her. He says directly to her, "You're really jazzing me out girl. Where did you get that outfit?" to which our daughter responds by flashing her eyes and smiling that million dollar smile that only Leonardo DiVinci knew how to capture.

We don't know anything about Mona, do we? Sure, she's somebody's daughter, wife, or friend but why is she famous? Because somebody, maybe even Leonardo, took the time to make her smile.

Spiritual Art of Raising Children with Disabilities by Kathy Bolduc



Dear Friends,

For those of you who aren't on Facebook, I'm pleased to announce the release of my new book, The Spiritual Art of Raising Children with Disabilities. I'm very excited about this book, because it combines my passion for ministering with parents of kids with special needs with my passion for the spiritual disciplines. The last section of the book is on the disciplines of prayer, meditation, lectio divina, worship, and celebration. It was so much fun to write that part of the book! I interviewed 14 parents for the first 4 sections, and tell their stories along with a few of my own.

It's my hope to have a book signing/release party in April, but just in case that doesn't happen, I'm asking my friends to order a copy of the book to read and then give away to your churches or someone in your circle who has a child with special needs. I am also hoping that you will take a few moments after reading it to write a short review for Amazon (just a couple of sentences) to help bring the book up in the ratings. I'm determined to get 40 reviews on Amazon by the end of April!

I'm also including a link here for my blog post today on Not-Alone, a blog for parents of kids with special needs that I blog for monthly. Today's post is the introduction to the book, which will give you a flavor of what the book is about.

http://specialneedsparenting.net/spiritual-art-raising-children-disabilities/

Thanks so much for your support. As you know, writing is my forte, not marketing. But I am determined to get the word out about a book that I believe could be a huge support to parents who are struggling to find God in the midst of some very hard times. As I often say, meditation saved my life. And these past few years, lectio divina has done the same!

Thank you so much,

Kathy

ps please share the newsletter below with anyone you believe may be interested. Thanks!


Kathleen Bolduc


www.kathleenbolduc.com



Just Released! The Spiritual Art of Raising Children with Disabilities


http://www.judsonpress.com/product.cfm?product_id=17766
Amazon.com

Searching for the X Factor

Most of the time, I admit, I operate on an emotional level when I should be using logic. Through clear deductive reasoning, for example, I should have figured out those sudden outbursts made by Elisabeth were years of frustration building up maybe from not using the potty for the first 13 years of her life.


Yes, I am exaggerating a bit about the potty training because we did try in earnest every year unsuccessfully. The point is that it's never easy figuring out their pace of personal development when all we have to work with is what other children are expected to do. For some it may take an entire lifetime to reach a milestone and for others it takes only a year.

For example, when most children are completely potty trained by 4 or 5 years old, Elisabeth was at at a different level of development. According to the pediatricians and specialists, Elisabeth continued to function as a 5 or 6 month old infant in all areas of communication, fine motor, gross motor, and neurological development. So naturally as parents, we responded emotionally to her needs the way most parents would respond to a 5 or 6 month old infant.


Like most parents, we used this emotional connection to form the basis for her development overall. It made everyone around her feel good meeting her needs because it resulted in favorable responses. We saw a personality emerge. We saw progress in other areas of development.


The flip side is that keeping her in that perpetual "happy state" does not prepare her for the world outside of our home because the world simply does not function at this ongoing "happy state" level. An architect or engineer, for example, is not functioning at our "happy state" level while designing spaces and access that exceed ADA. Politicians and ethicists are not functioning in Elisabeth's "happy state" while debating and defining her quality of life and quality of care.

Are you following me here?


The point I'm trying to make is that all children are unique in their emerging abilities and different areas of development. And for most parents, it's a game of trial and error. We're all searching for that X factor. You know, that X factor. The factor that reveals itself after following the prescribed pathways created by what we see other children doing with similar abilities.


For parents and caregivers with children who are born with disability labels or who develop a label after birth finding that particular child who matches up to their own child in ability and development is challenging. Until we find that one person, all we have to go on is our own X factor. The factor we discovered in hindsight creating that emotional bond defining for us a fleeting but tangible smile to mean a "yes" or a flinch in eyebrows to mean a "no."

Managing ADHD


EManaging ADHD

Natural, Drug-free Approaches that Work!


If your child has been diagnosed with or shows signs of:
 

ADHD
Sensory Processing Disorder
Autism Spectrum Disorder



You won't want to miss this free informational presentation.

Learn about effective, natural, drug-free solutions
that can help your child reach their full potential.

Great for Parents and Teachers!

Tuesday, February 4th, 6:30PM – 7:30PM

Springfield Township Senior Center
9150 Winton Road, Cincinnati, Ohio 45231

RSVP (513) 931-4300 – Space is limited



ABC's of ACC by Matthew's Mom



Matthew's Mom, Sandie, has been leading the research efforts for as long as I can remember.  It was her blog that connected us to Dr. Eliott Sherr, who is still researching ACC at UC in San Francisco where Elisabeth was evaluated. 

I have created the link here to ABC's of ACC to help people understand how differently ACC impacts development for each child or adult. 


  ABC's of ACC

Something to cheer about!

Not your typical dog and pony show but a real commitment and effort from students creating inclusive and fun experiences for their fellow students is something to cheer about!

Something to cheer about!

Not your typical dog and pony show but a real effort and commitment from students creating inclusive and fun experiences for their fellow students is something to cheer about!

Collective Souls & Pillow Fights: Round Two


For anyone who ever wrote a string of words, conveying an event, an observation, or an idea that enabled another person to see goodness in our humanity, I say thank you. Your words must live forever because it is through your words I find hope and connection to humanity. It is through your words I see a future for my daughter where she can exercise her independence, freedom, and happiness. She will have struggles, like everyone, but unlike everyone, she will be one of the feathers in the air.


I've always struggled with writing. With words. I'm a spatial  learner. Not gifted. Just very spatially oriented. When somebody like Harriet McBryde Johnson comes along and starts telling it like it is, I feel justified. Sweet justice.

"Ahhhh... finally somebody gets it and can articulate clearly what it is we're all talking about."

What are we talking about?

We're talking about a fear.  We fear people who think they understand our children's needs but do not. The people who speak on our children's behalf. People who pretend to understand a language our children speak. A language that fewer people understand. People who claim to protect our children because a law requires them to do so. People who put so much credence into laws protecting our children that they no longer see the exception to the rule.

We fear that once we're out of the picture special liberties will be taken away once they grow into adulthood not with degrees from college but with a need to rely on people to do just about everything for them. We fear they will be left in the care of someone who is clueless about their real needs. We fear the laws that will be written in their behalf.   We fear they will be seen as a burden or an object of pity.

How will they know my daughter climbed Half Dome in Yosemite or packed through Many Glacier and saw a Grizzly? How will they know she camped on Assateague enduring a million hungry mosquitos just to hear the ocean roar at night under an evening sky crowded by twinkling stars. Will they care that she felt a stingray brush up against her ankle near the equator or sat in photos with the local celebrities? Will they know that making bubbles in a pool makes her laugh hysterically and sad music makes her cry?

How will they see her for who she really is if she cannot speak a language they understand?

We have no control over what happens to our children once they grow into adulthood once we're out of the picture. So when somebody like Harriet comes along, we want to hold on to her for dear life because she helps make the connection for all our children.She was a life line for all our children. She wrote with clarity and logic. When I write on my daughter's behalf, my ideas, my observations, my events, are described through words that are like feathers exploding from an imagined pillow fight. The words, like feathers, are always floating through the air for me. When I reach out for one to create something, it eludes me. When I reach down for one, the wind carries it away.

For anyone who ever wrote a string of words, conveying an event, an observation, or an idea that enabled another person to see goodness in our humanity, I say thank you. Your words must live forever because it is through your words I find hope and connection to humanity. It is through your words I see a future for my daughter where she can exercise her independence, freedom, and happiness. She will have struggles, like everyone, but unlike everyone, she will be one of the feathers in the air.

Sparkle Effect Cheerleaders


Puberty Happens...

Our children generally hit puberty head on regardless of their functioning "age" capacity.  We see the changes physically but we don't factor in that  the hormones are buzzing the same as any typical developing biological peer.

We noticed changes in Elisabeth's behavior toward the opposite sex around twelve  but we weren't thinking, "Oh, this is puberty" because she's generally happy-go-lucky.  She just happens to be around a lot of males -- her uncles, cousins, and friends at school.   In fact, there were so many other issues going on  "puberty" took a back seat until she turned 18.  When we started experiencing changes in her sleep habits, staying up later for example, then it all made sense.

In church, she would throw her chains behind her when she saw a cute college boy standing near her.  She tips her head to cuddle if you get close to her. She loves to be held with your arms around her. She also loves when you hold her hand which is something she would not tolerate.   It wasn't until I watched her "flirt" with one of the male volunteers at her school that I realized, "Uh oh, her emotional age is catching up with her biological age!"

And that's a good thing.  Here's an article about some of options parents and caregivers have about suppression of menstrual cycle which isn't an issue for Elisabeth right now.

Transition Bootcamp 2013

LAST CHANCE! REGISTER TODAY!


Please Join us for Transition Bootcamp 2013


February 9th

1:00pm-4:00pm

Location: Ohio Valley Goodwill Auditorium

10600 Springfield Pike, Cincinnati, Ohio 45215


Topics to be Covered:
· An overview of employment and personal development options following high school
· Information on funding sources and eligibility determination
· Provider Fair featuring a variety of agencies

TO REGISTER GO TO:http://dsagc.donordrive.com/event/Bootcamp13/







This email was sent by DonorDrive® software on behalf of Down Syndrome Association of Greater Cincinnati.
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Erma Bomback's Vanity Clause

(Note to readers: if you click on the title, you'll be directed to the article to which I am referring here.)

A while back, Elisabeth and I met a woman in a line at the bank. She was behind me crying very softly. I turned around and asked if I could help her. She unloaded the news of her newly born - mentally retarded granddaughter, her taking-it-hard daughter, and her falling apart family. The woman went on with "it's got to be so hard on you" and pointing to Elisabeth "the poor little dear." As she blew her nose in a tissue she said, "what kind of life is it with all problems she's going to have?"

I wasn't sure if she was speaking rhetorically but either way I couldn't answer. All I could offer her was empathy assuring her that Elisabeth was fine but caught myself like everyone does ending with a sympathetic "I'm sorry to hear about your granddaughter" instead of an opening "what is her name?"

She broke down even more. After I pointed at the empty chairs in the corner of the bank lobby offering to sit with her until she gained composure, I searched through Elisabeth's backpack on her wheelchair for candy or a bottle of water. Instead, I found a newspaper clipping that I had tucked away a few years before. A newspaper clipping I almost threw away.

It was a clipping from an article written by Erma Bombeck that finds its way into every hand of every family of a child with special needs whether they like it or not. I hesitated offering it to the new grandmother because I remember at first taking offense from what was written. But I needed to give her something tangible. I needed to make a connection to let her know things turn out okay.

After I assured her that Elisabeth is a very happy little girl, I asked if she ever read Erma Bombeck's articles. I showed her the clipping and explained how it was given to me shortly after Elisabeth's birth by a mother who had an adult son with CP. I handed the article to the crying grandmother who stopped crying long enough to look for her reading glasses but I stopped her and said, "no, wait until you get home."

Then I took Elisabeth out of her wheelchair and said "Elisabeth loves hugs from Grandmas and being that her Grandma lives far away, can she give you hug?" While this woman was holding Elisabeth's limp, curled 6 year old body, I shared with this woman what helped me understand the responsibility I had being Elisabeth's mother.

Before I became pregnant with Elisabeth, I told her about the photograph of a child I saw in an exhibit memorializing Anne Frank and all the children who perished with her. It was a medical photograph documenting a child ready to be "exterminated" due to her imperfection.

When I saw this picture, I explained, it was like I knew this child all my life. "I cried just like you were crying because I wanted to give her the life she deserved instead of being discarded like an unwanted gift.

"Everyone goes through stages of acceptance differently," I explained, "I went through mine early and you're moving through your own right now. It's natural to get stuck using a lot of our own personal energy and emotional resources blaming ourselves or blaming others and looking for cures and making bargains with God. Just remember what your new granddaughter needs most is a grandmother all children deserve to have."

After giving Elisabeth a hug, the new grandmother asked what she could do for her daughter, "She's still taking it really bad."

"For each new mother," I explained, "the experience and acceptance is different. The best thing you can do is to be the mother she deserves to have. The Mother you were chosen to be. According to Erma Bombeck, I was chosen to be Elisabeth's Mom because I was self absorbed and vain and I wouldn't have time to wallow in self pity or pity for my child. Hopefully you can get your daughter off the hook here, for Erma's sake." And I laughed so hard it echoed through the bank lobby.

The woman looked at me very curious and started laughing, too. "I loved reading Erma Bombeck in the newspaper" she commented and then I suggested getting back in line because the bank would be closing soon.

While we stood in line, I told her about Elisabeth's Grandmother's church club that raised a thousand dollars so she could have her own adapted bicycle because "no child should be without a bicycle." I felt a new confidence growing in the new grandmother as she saw Elisabeth through a new set of eyes trying to get her to giggle again.

The same confidence that was passed onto me as tangible as the newspaper clipping I almost threw away.

There and Back Again...

I don't make these things up. Elisabeth comes up with stuff like this on her own.  After reading over the symptoms of mastoiditis and looking at the picture, I realized we had something more than a bump on her head. It was a bump behind her ear I  found on a visit to Portland Maine over Thankgiving break.  I saw it while washing  her hair and asked if anyone had bumped her head enough to cause a bump this size.

Well, we are all guilty because she's not the easiest 18 year old  to get in and out of an airport taxi stand where security is yelling "move, move move!"  Okay, buddy, cut her some slack for not being able to get out of the car on her own! Nor is it convenient for her to get on and off an airplane because sometimes she's so spastic that she  cannot be carried down the aisle without bumping something! The restrooms were not up to her standards, either, so we had  major mobility issues there, too!    (We did run into Senator Lieberman ... )

When we got home from our trip, the bump started  looking like a cyst or boil so visited our primary doctor who thought it could be several things given her history of cholesteatoma.  The primary care  prescribed a broad spectrum antibiotic and "wait and see" diagnosis from our ENT this Thursday.

The challenge for me is managing this bump turned  "boil" oozing out from the back of her ear in two places. Peroxide, neosporin ointment, q-tips, and TLC.   She's not even phased by all this, but she can't go to school in this condition so we are at home waiting on a primary  care doctor to call about managing  this yucky ooze coming out of her head. 

This was suppose to be a fun week for Elisabeth.  Swimming on Tuesday and a  trip to the museum on Friday.  It was a great year for Elisabeth health wise overall.  No infections or anything to worry about in 2012 except that her ENT wanted to explore the ear area for cholesteatoma re-occurrence which was 40%. I guess now he has a good reason to proceed. Unfortunately, it requires a very invasive surgery complicated now by an infected mastoid. Exploring her ear for the culprit-- most likely a skin cyst or cholesteatoma -- that manifested itself in Elisabeth's series of unfortunate medical events.

Last hospital stay, Elisabeth was treated to a reading of  Jane Austen.  This time, I see a Tolkien fantasy about hobbits, elves, and dwarves in her near future.

Sensory Processing Disorder Information

What Is Sensory Processing Disorder?




COMMUNITY SERVICE EVENT

Wednesday September 19, 2012

6:00 – 7:30 P.M.

Springfield Township Senior Center

9158 Winton Road



Dr. Laurie Jahnke will be presenting a FREE lecture on brain and nervous system function and their critical roles for social, motor and academic learning.



...If your child has been diagnosed with ADD/ADHD, Autism Spectrum Disorder, Sensory Processing Disorder or other learning disorders, you will not want to miss this presentation!



Learn of drug-free treatment options that can help “turn on the lights” to your child’s nervous system and allow them to reach their full learning potential!



Great for parents and teachers!



PLEASE PHONE 513-931-4300 TO RESERVE YOUR SEAT Space is limited- the first 50 people to register will be entered to win various raffle prizes that evening!

What To Expect Neo Natal Diagnosis of Agenesis of the Corpus Callosum

If you've had your prenatal ultrasounds and they're seeing dilated ventricles, cysts, and shadows around the brain stem, it can be a bad ultrasound.  On the other hand, if you are told that your ultrasound indicate a red flag -- shadows around the brains stem, cysts, dilated ventricles --  be prepared. 

It's possible that many of the complications in global delays we experienced after our daughter's birth began in utero.  Our baby, for example, didn't do what other babies do preparing for the journey through the birth canal. She was very subdued.  Not active.   She wasn't going to come out.   In fact,  I was on my maternity leave for 3 weeks and still didn't have the baby.   Why did I wait?

Looking back, I wish that I would have taken the advice of the neonatal specialist at the Seton Center at Good Sam and had the baby around my due date.   Instead, I opted to follow the advice of my Ob/Gyn who thought the placenta looked fine and suggested to wait it out.  Of course, she didn't know anything about Agenesis of the Corpus Callosum then.  Nobody knew anything about  complications or delays so I waited and waited.  

My Ob/Gyn ordered daily ultra sounds after I was  1 week  overdue to check the placenta and organs. I probably should have followed my instincts because years later I learned that "cortical visual impairment and macula atrophy" which is written on her birth record generally results from oxygen deprivation at birth.   So if you're concerned about your baby's ACC diagnosis, contact me at elisabethssite@yahoo.com.


If  you're pregnant and concerned, write me at Elisabethssite@yahoo.com.


Thank You President Obama & First Lady Michelle Obama

I want to be the first to congratulate you on a job well done. First, thank you for signing the Healthcare law so that my daughter will no longer be discriminated against because of her disability label. I also want to thank you for making it harder for insurance companies to discriminate against families by charging higher premiums due to pre-existing conditions or medical histories.

Secondly, as for responding to the challenges we face as a nation regarding energy consumption and responsible environmental stewardship, I would like to thank you personally for living up to your campaign promise.  I also understand the challenges of economic sustainability so I applaud your efforts here as well.

Third, I would like to say thank you to our First Lady Michelle Obama for taking an interest in our children by educating families about childhood diseases resulting from obesity.  We have so much to teach them about the impact of a healthy diet on their overall development.   I'm also very happy about the little garden you planned for the White House, too. It inspired our family to add  a few more planting beds in our own  back yard so we have more control over what we feed our children.

I am sorry that more people haven't showed gratitude and appreciation for what you've done so far. I can't imagine a single American who will not benefit from the Healthcare law.   I'm hoping that during your second term, we'll see even more improvements in the quality life for all Americans.

 Thank you, again,  for reaching out into the margins and acting on behalf of all people while also keeping focus on the big picture.



Kind regards,
Elisabeth's Mom

Thank You

I've received many e-mails over the years thanking me for writing about my experiences. Unfortunately I have to turn off the "comments" due to the spam I receive so I do appreciate the emails.  I'll turn it on again.