Saturday, December 15, 2018

So They Tell Us...

So here it goes. I have a breaking point. And so do you. Sure, it's not easy what we do. And people recognize that which is why we always get that one person who comes up to us in the department store or grocery and says, "I couldn't do what you do everyday." 

Some days, I can't do what I'm suppose to do, either.  In fact, there are days I'm just plain lousy at what I do and would be more than happy to leave this disability business behind me.   Some days, I wonder what if I just decided not to do this  anymore, climb down from this pedestal, and pedal off into the sunset. What if I just gave Elisabeth over to the State of Ohio and said, "Sorry, but I can't do this anymore."  That's where my breaking point is, I guess.  The very day I decide I can't do this anymore.  The day I reach my limit and operate out of my range of being human.

Remember, people like our children were institutionalized not out of convenience.  People were institutionalized because it was stressful and difficult to keep them at home.  In the old days, when children like Elisabeth were born, your doctor would arrange for your child to be sent to a special home.  They did that because it seemed humanly impossible to be expected to care for your family while also caring for a child with special needs.  And it wasn't that too long ago when  it was suggested to me shortly after Elisabeth was born that I contact St. Joseph's Home.   It was that easy.  

The thought of Elisabeth being anywhere except at home was unthinkable.   She's was  just a little baby. How can you not manage a small, helpless baby?  And the medical issues, I thought, will have to be handled one issue at a time.  Isn't that what people do in the workplace and life in general? Take it one challenge at a time?   

What we do everyday, keeping our children with special needs  at home, is challenging.  It wears on the family dynamic. It wears on the finances.  It's stressful.  It's like living with PTSD. Everyday.  I see that from the newer moms and dads I've met through the DDX3X Syndrome network.  Some of them are hearing  the "news" after missing basic milestones in development.  They don't realize they're grieving because they've already shifted into their survivor's mode. They have to because they're dealing with a little helpless baby.  Period.  But I see expressions of their grief and PTSD   in their vents and rants about this special needs business that intruded on their life like a piano crashing down on their living room.  They come oh-so close to that breaking point.   I wonder how long will it be before they recognize their breaking point?
  
When people come up to me, to us, and say what an inspiration we are, here's what I want them to know.  We are in survival mode, everyday, so I need them to advocate for Elisabeth and her friends to be her  personal press agent. I need them to create an awareness about needing more resources, funding, and support for what we do.  We need them to support organizations like Special Olympics, Down Syndrome Network, and United Way.  We need them to support their school districts.  We need them to support organizations that provide early intervention so adaptations can be made to our homes and bridges can be built into the community.  I need  them to contact their governor, senators,  and reps to let them know what we need to keep our children at home and in the community  because not everyone can do what we do everyday. Or, so they tell us.

Tuesday, November 27, 2018

Giving Tuesday 2018


The DDX3X Foundation has reached a critical point in our efforts where we have an extraordinarily team of researchers (12 and counting!) focused on curing this condition, but we need more funding to expand our resources. On this special #GivingTuesday, please consider helping us find a cure by donating to the DDX3X Foundation. Because of the leadership of parents, 100% of all money raised goes directly to research. Please join me on my Facebook to make a donation.
Our family thanks you in advance for your love and support on our journey!

Thursday, August 23, 2018

Special Needs

I’ve been at this for 24 years and glad we are having this discussion.

It’s a catch-all phrase “special needs,” isn't it?  It's used for children and adults who are medically fragile and developmentally delayed.  Children and adults, like Elisabeth, who  need  specialized care to perform the basic functions beginning with getting out of bed, toileting, bathing, dressing, and eating. They  need specialized care for mobility,  communication,  and they need specialized care to access their free and appropriate education and they need special care to bridge into community life.

I found the term "special needs" tolerable to the alternative.  For me, it described what she needed to explore every single ounce of her humanity.   Her diagnosis at birth was a long  list that included both  severely “mentally retarded” and severely  "multiple handicapped" due to the fact that half of her brain did not develop.  She is special needs because she is impaired.

What should be concerning for all of us is how our  children are received, welcomed, and respected into the world whether they are entering a classroom as a preschooler or bridging into community life later  as an adult.   We can’t let words get in our way when she is facing  bigger barriers on a daily basis. The barriers that separate her from her abilities and disabilities.  A world that defines her quality and purposeful  life based on her  special needs.

Wednesday, May 9, 2018

DDX3X Gene Mutation and Finding Hope in the X Factor

Elisabeth's global delays, we've learned recently, were all caused by a mutation in a gene identified as  DDX3X.  I think the scientists are just now putting the puzzle together with all their findings going back to 2015.

We are also learning that Elisabeth is among a small group of girls who were found with this same mutation.  So. We're not alone.  And, there may be a tie in to ASD. 

Now how's that for news?

The best news of all is finding friends,  articles, and blogs that speaks "diagnosis" because when people asked me about Elisabeth's diagnosis, my mind goes blank. We could never name "it."  That thing that separated Elisabeth from her typical developing peers.  That thing that radically changed her life and the person she was designed to be.

Where do I start? I was always nervous rattling off the symptoms, not the diagnosis. Did all these symptoms really define her? The Agenesis of the Corpus Callosum, optic nerve atrophy, spastic quad, CP, and the string of  other things  written down on medical forms throughout her 24 year old life, over and over. Is this who she is? And how do you explain  mutation?  The billions of letters of DNA in which one letter doesn't copy because of this thing called "protein" which is essential to all development of life on our planet. Is she a tiny mistake in nature due to tiny error rate?

I've been writing this blog to document Elisabeth's journey. It's a true story about  our daughter Elisabeth.  A story about Elisabeth exploring  every ounce of her humanity. I also wanted  to  document my own discovery of her humanity instead of seeing her as a mutation or a disabled person with special needs. My  role as her advocate and caregiver was and remains to make sure this  very messy and complicated life doesn't  spiral  out of control.

It was this blog that I tried to jot down and link up to any person,  article,  or information that would help me create her  niche, her community, and her purpose in life.

Several years ago, I wrote this article called the "X factor" that helped me discover the connection I had to make as her mother and the connection she had to make with the rest of the world:

"For parents and caregivers with children who are born with disability labels or who develop a label after birth, it seems impossible  finding that particular child matching up to their own child in ability and development.  The milestones, the charts, and the sequence in development is not there for our children.

All we really have 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.""

Wednesday, March 21, 2018

".... and it was hard to get him to do things."

My heart goes out to this mother who put her trust in staff working at an adult daycare in Cincinnati.  Shee thought the staff  were experienced at caring for her son with autism.

 The only thing that RMS got right in the article is how challenging it is caring for a child or  adult with severe delays in development (which is why they are placed in a special workshops and care centers.)

RMS, according to their mission,  is a "family of human service organizations providing residential, vocation, and recreational support to individuals with developmental disabilities."

What surprises me is that no one at RMS  communicated their concerns to the mother beforehand  about his behavior. It was only after she went to the press that suddenly there was an issue with his behavior. If  he fell, it should have been documented. If there was an issue, it should have been documented.

Aren't they suppose to be the experts?

One thing to look at before considering a respite or day center is to ask about the experience and training staff have with adults who are on the spectrum.  If your son or daughter is on the spectrum, you want someone who has experience so they can avoid the triggers.   You don't want them endangering themselves or others, so what kind of protection services for clients mixed up with other clients with behavioral plans?

If there  is a behavior plan, for example, ask what staff  know about avoiding triggers without impacting quality, purposeful, and dignified care.

My experience with respite, leisure, and recreational care  is that there are some really awful places out there in Cincinnati driven solely for profit.   I mean, "run, don't walk" awful.

Make sure you go with a respite or day care with a really good reputation.  Redwood Therapy Center in Northern Ky, St. Joseph's, Stepping Stones,  Metzcor, Sunny Spot, and ABS  are a few to name off the top of my head.  These are the places that repeatedly come up in community conversations about offering quality care. They hire staff with experience so they know how to guide behaviors that can be difficult. They will communicate with parents/caregivers daily about any unusual behaviors they see developing in your son or daughter. They will be concerned because they care about what kind of day your son or daughter is having away from home.

What do you look for?

Look to see what the adults are doing throughout the day.  Are they guided through activities based on their abilities? 

Ask about the experience the staff have with the population of adults with special needs and on the spectrum.  Where did they get their training?

Observe how they are touching clients.  Are they grabbing arms or gently guiding?

What are you hearing?  Kind and calming language?

Is the room welcoming? Do you see cabinets with activity bins, games, and adaptive equipment?  Are there tables and comfortable chairs?

Most importantly, do you see staff directly working with clients in small group activities?

How many staff are in the room directly or do they count "staff" who are in the offices or on the premises?

Ask staff directly how long they've been working there?

High staff retention is a good thing.  The more staff you see around the room working or guiding clients,  the better the organization.

It's really important that you drop in as much as you possibly can.   Even if it's just for a minute to say hello and see what they're doing.

Sure, things are not going to be  perfect. But, anytime you drop in, you should see your loved one doing something meaningful with a group that is guided by a staff.

It should feel and look  like they are being welcomed and in the best of care.

It's what they deserve.




Saturday, March 3, 2018

Three's a Charm

Elisabeth came into the world with a 5 year old sister who was just starting kindergarten and just learning about her new and very fragile baby sister.  She was ready for Elisabeth and had "Big Sister" training and a t-shirt to prove it.  Elisabeth also is three years older than her baby sister.  She was the baby sister who put Elisabeth into giggles when she cried and the baby sister who insisted on pushing Elisabeth's wheelchair as they got older.

When we talk about future caregiving for Elisabeth, both of her sisters say without any hesitation they will take responsibility.  The idea that Elisabeth would live anywhere except with her own  family is beyond their scope of understanding.  They think this way because they know the way of the world.  Both sisters  spent a few years working with marginalized populations  transitioning into the community.    From their perspective, they think they can manage the caregiving responsibilities while also having their own careers as long as there are quality day facilities and community programs  that parallel their working hours. As long  as Elisabeth has access to funding.

For most of their childhood, I stayed home.  I realized I couldn't "have it all" working outside the home and had no other options left because  Elisabeth was aging  out of her  specialized daycare at Redwood Therapy Center and was ready for the school district and the world of IEPs, FAPE, and LRE.   Elisabeth's needs grew beyond what I could do working full-time away from the home.  She wasn't sleeping. She was requiring extra trips to the doctors, surgeries, therapies, and we didn't have the resources to hire a helper or nanny to care for her while I was at work.

It was a charmed life staying home.   Elisabeth's dad seemed to be more relaxed knowing there wouldn't be anymore  interruptions at work.  And his job changed so he could have a little more flexibility as my back up.   It was almost perfect, really.  It was like all those prayers that people say on Elisabeth's behalf were all working.    The girls all found their niches -- art club, music club. band, theater, soccer, softball, basketball, track, scouting, band, cheerleading, and community service clubs.  Then they said goodbye to Elisabeth and went off to college to earn their degrees and their place in society.

Then, somewhere in this charmed fairy tale existence, things went awry.  Suddenly the wear and tear of caregiving started showing and I found myself hanging from this very thin thread about to snap.  The reality of her leaving her school community sunk in. The truth is, it's not easy being a caregiver full-time. So,  when I started  looking at her life after graduation, I began seeing the same anxieties and stresses  that I see in other families like our own.  We don't have to say a word because we know that  "I know" look.   We know.  We can't do it on our own.  We need help.

Today, I am scheduling a meeting with a reputable respite care center for adults like Elisabeth.  I've watched other very strong and capable warrior moms do the same.  It's hard. I'm making plans for Elisabeth's future because she needs her own independence.  She needs to find her own niche and get acquainted with the staff and activities to bridge into community life.  And her sisters need an option for Elisabeth, too.  It's just something I know I have to do for all three of my daughters because I know the way of the world, too.  And the way of the world for Elisabeth is that she needs her own community.

As long as we have funding for quality day and overnight  respite facilities like Metzcor, Stepping Stones, and  St. Joe's that are run by  quality skilled-nursing and tender-loving care, I think Elisabeth will be just fine on her own when her dad and I age out of our caregiving responsibilities.  Her sisters will still be part of her life and community bridge building, but they won't have to do it on their own.

Add caption




Thursday, February 23, 2017

Joey

It's really hard to know what we're looking at here.   

"Joseph Bishop, 18, died at Cincinnati Children's Hospital Medical Center on Feb. 11. Bishop, who suffered from Duchenne muscular dystrophy, lived with his mother and grandparents in Ludlow, Kentucky. His mother and grandparents were charged with second-degree manslaughter in his death. "



Is this really a case of neglect or are we looking at the end stages of DMD? Are we looking at criminalizing a family woefully unprepared and ill-equipped for the herculean challenge of DMD or are we looking at a disease that from early diagnosis required a "joined-at-the-hip," step-by-step coordinated effort from the medical community, school districts, and disability support agencies?

On one hand, the end stages of a very aggressive diagnosis of Duchenne Muscular Dystrophy (DMD) does not look good. I'm sure it is shocking for anyone to s
ee a person succumbing to a disease that essentially rots your muscles from the inside. Bed sores, for example, are very common because the muscle tissue is rotting as a result of the disease, not necessarily due to any lacking of care.

On the other hand, Joey's condition upon receiving the diagnosis required medical management of extensive therapies, 24/7 caregiving, alternative education opportunities, and ongoing intervention because there is no "treatment." 

In Ohio, through the coordinated efforts of familiy advocates, Hamilton County Developmental Disabilities Services, school districts, and Ohio DD, children impacted by the most serious of disabilities can live dignified, quality, and purposeful life and in many cases, bridge into community living. 

So my question remains, what happened to Joey? Why wasn't he in school? Why wasn't Children's Hospital Medical Center, certified to manage lifelong care for DMD, in communication? Why didn't the family have support services to call for help when it became clear his needs exceeded their ability to care for him? Or are they like other families caregiving 24/7 and overwhelmed, isolated, and ill-equipped just meeting the basic needs of their child or adult? 

It's a messy and complicated business caring and advocating for kids with special needs when advocating agencies and many school districts operate without adequate funding. Maybe Joey's family can help us understand what went wrong, why they were afraid to call for help, and why he wasn't in school working on a plan to transition into community life regardless of his disability which is guaranteed by ADA & IDEA federal laws.

Saturday, November 5, 2016

Tiffany's Revisited...

Elisabeth really enjoyed Chicago last week.

We spent a good deal of time hiking down Michigan visiting the museums, Navy Pier, and stores. Oh the many, many stores. One store Elisabeth visited was Tiffany and Company because her grandmother wanted to price one of the charm bracelets there.

I told my mother, "You know what they say about Tiffany's, don't you? If you have to ask the price, you probably can't afford  it."

Elisabeth disagreed, so in we went right about breakfast time. All six of us. Elisabeth's mother, sister, grandmother, auntie, and cousin looking more like we were hiking through Glacier Park and observing rock formations instead of the "Million Dollar Mile."

As it turned out, the girls were fascinated with the jewelry and one can always dream, right? But halfway through the visit, Elisabeth was becoming very irritated so I headed to the restrooms three levels up to check it out.

As it turned out, Elisabeth needed the facilities and fortunately Tiffany's restrooms were more than accommodating for her needs. To be safe and spare a Tiffany shopper from embarrassment, I asked Elisabeth's eleven year old sister to stand guard at the door to prevent anyone from walking in on us.

It was taking a little longer than I expected but I overheard on the other side of the door, a woman's voice inquiring why it was necessary to guard the door. Elisabeth's younger sister responded by saying "my mom is in there with my sister and they need a little privacy. She should only be a moment." After a few moments, I overheard the woman whose patience was wearing thin I imagined asking my daughter, "How old is your sister?"

"Fourteen."

Silence.

"Oh."

I suppose this stumped the woman but she either continued to wait instead of barging in like so many people do after their curiosities get the best of them or she simply moved on because I didn't hear anything else afterward.

After Elisabeth was ready, I opened the door and found standing next to my daughter a woman wearing business attire and sporting a store manager's badge. She smiled at Elisabeth and me, helped me with the door, and went her separate way.

I couldn't imagine in a million years what was going on in that woman's mind while she was standing there and waiting to use the bathroom. A bathroom that was being guarded by an an eleven year old who offered nothing more than a simple request for her to wait because a 14 year old sister needed privacy. In Tiffany and Co.'s restroom of all places.

And this woman waited patiently giving Elisabeth the dignity and privacy she deserved not because she was a shopper at Tiffany's, not because she was disabled, but because she is a human being.

Friday, July 8, 2016

Resources about Puberty

Elisabeth experienced a delay in puberty. It wasn't until she was 17  that we were facing it head on with changes in her sleep development, discomfort, and overall behavior.   We were recommended a wonderful medicine that eliminated her cycle and adjusted her hormones.

Here is an article for parents and caregivers about puberty and how we need to observe very carefully how differently it can be for each and every child going through it.

Thursday, May 19, 2016

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 DaVinci 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.

Wednesday, May 11, 2016

Transition Bootcamp October 2016

Save the Date! Transition Bootcamp 2016 Friday, October 28, 2016 7:30 am - 3:00 pm Sharonville Convention Center 11355 Chester Road • Cincinnati • Ohio • 45246 • Keynote Speaker • Vendor Fair • Panelists • Breakout Sessions • Breakfast and Lunch • Free Parking Topics covered include: Transition IEP • Behavior Supports • Post-secondary Education Options • Employment • Community Inclusion • Advocacy • Healthcare Transition • Social Security and Medicaid • Guardianship • Financial Planning• and more! Target audience: Family members and caregivers of transition-age youth and young adults who have developmental disabilities. While general information will be provided, this event will primarily focus on resources in southwestern Ohio.

Tuesday, April 12, 2016

Help Us Get the Word Out...

About 2 weeks ago Disabilities Rights of Ohio (DRO) sued the state of Ohio supposedly on the behalf of people with disabilities.  DRO is actually funded by the government as a supposed watch dog.  They do not represent all people with disabilities.  They especially seem to ignore the concerns of the most vulnerable.  

Please take a moment to click on the attached link (there are 2 depending on whether you are a parent/guardian or a friend).  You just put your contact information in and it generates a letter.  I did find that a few recipients wanted additional information from drop down menus before being able to submit the letter.  

The Disability Advocacy Alliance is a group that formed last year with the changes initiated last year for people with disabilities that are limiting peoples choices.  We met one of the people that started this group when Bill, Robby and I went to Columbus last year.

Thanks for your time and support.

God Bless,
Elise

Thursday, April 7, 2016

Neverland

Elisabeth participated in a school production of  "Peter Pan."  She auditioned for the play and got the role of  "Wendy."  The play was created to  include all the students in the school so it's a very different story about Peter and friends looking for inclusive opportunities and sharing their differences.

Wendy, John, and Michael come from a  very different world but  are  open to accept Peter Pan and his friends at Neverland --  even Captain Hook, Smee, and Ticktock.   As it turns out, they all make friends by sharing what makes them special.

It's sort of like life for our adults and children with disability labels and other challenges.   When children and adults developmental patterns diverge from what the rest of the group is doing, they slip further  away into a "Neverland" existence.  It's because many  are lost in our sensory-driven and loco-motor world. A world  requiring people to have cognitive, motor,  and communication skills to survive. Parents often find themselves in "Neverland" as well from sleep deprivation, worry, and other issues that become barriers to advocating for your child.

This  big push for assimilation, integration, and inclusion is confusing.   It shows that the policy makers and game changers still  have no idea what our children need before undertaking this dramatic transition into  community life according to their own unique ability.   Instead, they create a very large template and expect each and every student to fit under it.

Peter knew all along that no matter how big you make the template, there will always be a population who will never fit under it.   It explains why he stayed in Neverland for so long.   But he kept looking until he found a window into Wendy, John, and Michael's world.


Here is the audition tape we submitted for the play:



Friday, April 1, 2016

Lawsuit seeks community-based options for Ohio's disabled

Lawsuit seeks community-based options for Ohio's disabled but also endangers a population of adults currently receiving services through ICF settings offering safe, quality, and dignified care.



One family I know with  two children are currently receiving services through ICF settings.  Although the lawsuit is on behalf of families going without any options, waivers, or services, it runs the risk of forced closings of ICFs  that appear to be the only option available for a population of children and adults who require specialized services to be integrated into community life.



As it turns out, there are very few community-based options for adults other than going into group homes and jobs.  However, if your son or daughter's disability requires more care and cannot work, there are few options as it is.












Tuesday, March 22, 2016

Ohioans with disabilities face changes to sheltered workshops





We all want community integration for our children and adults. Hamilton County Development Disabilities Services is a well-respected and invaluable community resource for bridging our children and adults with severe disabilities into community life by offering specialized workshops and programs according to their ability. Why would CMMS (Center for Medicare & Medicaid Services) and DRO (Disability Rights of Ohio) challenge an invaluable agency like HCDDS already serving a population of adults and children in a community already at risk due to waiting lists, increase in caseloads, and loss in funding from the State of Ohio?



  

Girl From the North Country

I listen to a lot of music because it provides comfort during times when I am at loss for words. Anytime I start writing about  Elisabeth's transition, I am at a loss for words because I feel so much sorrow.   I experience sorrow because I know she is losing a valuable connection to her school community.  So I am listening to  music from a time I was a teenager transitioning into an unknown adulthood.   There were choices I made back then that empowered  me to be the person I am today.

As my own daughter of 21 years is making her own transition into community life,  I wonder what she is drawing upon to bridge into adulthood.  Does she realize what's happening?  Or is she like most people who take it one day at a time without realizing they're on a pathway through time?

Elisabeth is non-verbal but she is very expressive using sounds, facial cues, and body language bouncing between happy when things are going great  and discomfort when things are not so.  She is perfect in every way except that she is unable to determine the outcome of her life.   She cannot self-determine her life without someone being there, by her side, to make it happen beginning with getting out of bed.

She is also transitioning into community life thanks to the rescue efforts of Hamilton County Developmental Disabilities Services.  Up until December, we were without a clue until an announcement was made by one of her transition advocates that funding was available to help her bridge into the community.

The challenge for all of us is defining for her what her community life will look like after she leaves her school community since she cannot determine this on her own.   She loves familiarity and closed spaces.  She loves navigating through the halls in her school in her gait trainer  using the narrow hallways to form a direct pathway into which she must pass through.  She loves the echo of basketballs bouncing on wooden floors.   She loves ice cream, polished nails, new hair cuts, and sharing her life with anyone pushing her  wheelchair.    

She has always responded with a determination and purpose  at Bobbie B. Fairfax School where her environment was designed for her developing abilities and creating  her own milestones. She has developed an ability to do things in this school because  it was an environment that allowed her  abilities to develop at her own pace.  It was a school that understood milestones for one student is going to look very different for  another.   There were people who challenged her to do what most people take for granted.  In just 63 days, that pathway through the hallways and her life for the last 21 years will be a memory.

Looking for a similar environment is very difficult. The hallways, the sounds, and the creative, compassionate, and dedicated people who were part of her progress cannot be duplicated.

Or can it?

With everything changing in the next 63 days, it's hard to imagine how we're going to "reproduce" the same environment to continue getting the desired responses from her.   We've had little taste of what happens when things change too quickly for Elisabeth.  For example, we noticed  dramatic changes in Elisabeth during summer vacations becoming   agitated and  frustrated because her routine had changed from the school year.  So we stayed busy doing things everyday to keep her happy and responsive.

It's hard to imagine what will be going on in Elisabeth's mind when she realizes she's not going back in September which is why transitions are so important for this population of adults wearing a one-size-DOES-NOT-fit all disability label.

Today, I met one of Elisabeth's former pals from school who made that transition a few years ago.  She is enrolled at an adult daycare that looks like a huge warehouse on the outside, but inside has spaces allowing  interactions to take place between staff and clients.   There was a familiarity shining  in her eyes as I called  out her name and recalled where I knew her from.  As I called out the  names of  her friends and teachers and reported how everyone was doing, she reached out to me.  She smiled.

 Driving home, I tried to imagine how my daughter would fit in that open space, without any walls to guide her in gait trainer. I hope that as the specialized services  change  in Ohio, she'll continue experiencing the same confidence and independence  in  workshops, programs, and activities where she can respond directly.  Workshops, programs, and activities that will give her a sense of purpose, dignity, and belonging to a community that values her special abilities.

I imagine that one day someone will recognize her somewhere out in the community and hopefully be  blown away by her progress seeing  the same determination and purpose in her responses for which she was known. Hopefully, they'll see a  spirit that sparkles when her name is being called out for her attention.  I hope she will respond  in a way that is genuine and meaningful for  her.

"I’m a-wonderin’ if she remembers me at all
Many times I’ve often prayed
In the darkness of my night
In the brightness of my day" 















Tell Me Why...

"Sailing heart-ships
thru broken harbors
Out on the waves in the night
Still the searcher
must ride the dark horse
Racing alone in his fright.
Tell me why, tell me why" ~ Neil Young




I'm all over the map on this one.  It's depressing news for many of us who know all to well the emotional toll the intense role of caregiving takes on families.  A mother ends her daughter's life and then takes her own.  It happened to my former boss and his wife ending their life  late in their 70s.   If you knew the wife, and I knew the wife very well, I couldn't imagine her  in a million years first ending her husband's  life  before ending her own.  There was  also a wonderful  father we knew, a few years ago, who committed suicide leaving his wife and daughter because he was depressed and overwhelmed by caring for his daughter's severe medical needs.

When these people  came to the end of their rope, what did they find? What do we hope we find?

We hope we find direct and concrete responses like a call or announcement that funding is available offering independence, quality, and purpose for our loved one's life.  We hope we find  that help is on the way. We hope that no matter what happens to us --  job loss, cancer, or whatever -- our loved one will enjoy independence, quality, and purposeful life.

We often find through our networking a broken system that continues to challenge us as parents.  A system that instead of helping our loved ones, creates a template under which all our children must fit to experience independence, purpose, and quality living.  A system that continues to create more barriers for our children then we ever dreamed would stand in their way.

We always hear how we can love someone more than life itself.   What happens when a person can no longer bear another day without adequate resources?  How does a person arrive on this journey through life where ending it is their only solution?


I have to say their names everyday -- the people I have lost to suicide -- because it helps me re-connect to the sensory and mobility magic of living each day with those people I love more than life.



Friday, March 11, 2016

Tao of Stem Cells...

I use this title to give reference to Aiden Crane's Dad, "Useless Tree" blog because after reading some of the entries on his blog, I found myself time traveling back to China during the 5th century b.c.

Some of the details about China at this point in history are fuzzy. It has been a very long time since I read the court annuls,  philosophies, and folk stories that emerged from this  time in history.  

"If you have a thing to shrink, you must first stretch it;
If you would have a thing weakened, you must first strengthen it;
If you would take from a thing, you must first give to it."

Then, I remember this dream:

I see Lao Tzu (old man) is writing out his "five thousand characters" near the Pass, and I hear the comforting words below from Confucius saying we must love without discrimination even though  warring factions are brewing and warlords will be soon ascending upon this place of tranquility. 

I am weary of war. 

My body flies over the Himalayas to stop in India where Susrata is doing the first cataract operation and over in Greece where Alcmaeon of Croton is making the connection between the brain, blood vessels, and arteries.

I am carried further back to unrecorded time finding a person hovering over another person who appears to be dead. It appears this person is carving a sharp object into the dead human body. In the bushes, there is person hiding who gasps at what is happening and runs away. The person continues with the work at hand but is interrupted later by a group of people who are shouting. It looks like this person with the sharp object is trying to explain something but nobody is listening. He is engulfed by the sound.


I am weary of ignorance and fear.


I think about the  consequences resulting from the very  first person who performed an autopsy with all the associated cultural taboos  and how similar the situation is today for a young geneticist finding a way to reverse a mutation.

We ask,  where do we draw the line?

If we draw a line, we are disconnecting the present from the future, the past from the present, or the past from the future. And time is not linear.


It seems like all the primitive forces of nature known to humans  appear to be flowing in one direction while forces driving the inquisitive nature of humans are flowing in the opposite direction.

This is the Tao of Stem Cells.

Saturday, September 5, 2015

Theater of No

As a person who advocated that my child is not the disability label she wears, I find it frustrating that before she can be fully integrated into community life according to ADA I must show proof she is disabled. I must show proof that she is incapable of doing things that other adults who are also disabled but are capable of doing.  

I have stacks of medical documents stating what her condition is and no one wants to bother learning about her disability. People make assumptions about her and about me so I am forced to have these ridiculous conversations:

No, I'm not holding her back, I'm just giving you the facts here about what her basic level of functioning is right now.    

No, college or working at a grocery or department store is not an option here, sorry.  

No. She can't hold a job unless there is someone there by her side speaking for her and moving her body to do the basic functions for the most menial job. 

No, her responses are about 50% accurate.  

No, she cannot use the bathroom or change her diaper independently. 

No, it will not benefit her to sit and watch a video about employee policy and procedures. 

No. She cannot afford to pay for an aide if she is hired for this minimum wage job.

No, she can't wait by herself at a bus stop, and no, I can't drop her off at bus stop and expect that she'll know which bus she should get on. 

No, her mother is not available to accompany her to a job, bus stop, or where ever. 

No, she can't live independently as an adult without first someone getting her out of bed, feeding her, dressing her, etc. 

No, sitting at home all day is not community integration.