Mother Of All Inventions (Adapting Wheelchairs & Bicycle Trailers)

After 21 years, Elisabeth outgrew her bicycle trailer. It was the trailer that she and her little sister shared on so many fun bike trips.  Now that her little sister is in college,  my husband and I are finding we have a lot more time to hit the bike trails instead of band competitions & other high school events.  Elisabeth is smaller in size and lighter in weight than most adults her age so we continued using the trailer until this year we noticed she was not comfortable balled up with knees at 50 degrees.  Her PT recommends 90 degree knee  placement on seat.

So we found a webpage that gave us a rough idea how to adapt our old bike trailer w/tow bar and an old wheelchair that still works for her.  The results are what you see in the video clip below.  I included an old picture of Elisabeth and her little sister in the bike trailer when they were very young.

Here is the video of the almost finished project.

Report on Community Solutions

Report on Community Solutions in Ohio

Ohioans with disabilities rely heavily on institutional care and sheltered workshops to live in quality, purpose, and dignity. While there are many families who need specialized services, work shops, and medical care 24/7,  there are  group of people who see it as  isolating  and restrictive.

With so many lawmakers and politicians making decisions, it's important to read reports like this one to help educate voters why we still need specialized services because our State of Ohio is in such turmoil over the interpretation of the Olmsted Act.  Just remember, whatever cuts are made at the state level will impact what happens locally. This happened in 2000 when Gov. Taft closed most of the MR/dd daycares/schools claiming it duplicated what school districts offered.

While the system undergoes major changes in how our families are served in the coming years, please pay attention to the groups, politicians, and lawmakers appearing to advocate on behalf of our children and adults.

What Trickles Down ...

Yesterday, I had a major breakthrough in the principal's office at my daughter's school. It was the first time I cried in a very long time. I actually wailed.  My fears, worries, and anxieties about being the primary caregiver for my daughter for the rest of her life finally sank in over the summer.  I cried about the challenge of being her caregiver outweighing my need to work outside the home.   I say this because after spending the last 15 years attached to my daughter relying on me physically, emotionally, and socially, I saw no real independence for her.

 This reality hit me like a ton of bricks as we are approaching her last year of school. She is aging out of the school district and will lose  community connection through services we received through the school district.   In exactly 10 months from now, 180 days, she will be graduating from school with no future except to spend the rest of her life doing what we've been doing the last 15 years without the benefit of a school community which at least gave her a break from me. Although we have a transition team in place and community advocates at the table, we  don't have a real clear vision for what Elisabeth's life will look like after graduation.  We don't have a destination.  We don't have enough funding to support her with purposeful, quality, and dignified  care.

In Ohio, most of the funding has dried up for waivers and federally protected, state certified adult daycare and recreation/rehab workshops due to a ruling on the Olmsted Act of 1999 guaranteeing community integration for all adults with disabilities.  Waivers are additional funding for families who keep their adults at home but need community integration.  Waivers have been unavailable for the  Ohio families because there is no state, federal, or levy funding except in extreme emergencies.

Recreation/rehab day centers/respite care centers, for example, also  rely upon waivers to keep their organization going because most people can't afford to pay privately.  Weekly cost for most rehab/recreation daycare centers is estimated to be more than what most people make in a week at job so many families without waivers keep their adults at home.

 Disability Rights of Ohio is also  threatening lawsuits for any agencies or services that appear to isolate or segregate people from the community. As a result, many agencies and organization are being forced to turn away waiver funding unless it complies with the ruling.  What Disability Rights of Ohio fail to recognize is that local communities are not equipped with sufficient resources to integrate all of our adults with severe disability labels into the community.  It took at least 40 years to develop and implement programs helping people integrate into community life according to their ability and now they want to close everything down and redirect this population directly into the community.

 It's the trickle-down effect in action.  Local recreation and rehab workshops that were designed to help integrate people into community life lost federal and state funding over the years and had to close or limit enrollment to adults with special waivers.  As funding declines over the years, so does participation and enrollment.   And declining enrollment gives  politicians an excuse to defund more services and agencies because it looks like there is no need for it.  It's a vicious circle.  Caught in the middle are caregivers, advocates, agencies, and related services  struggling to find placement for their adults in the community.

Caught in the middle of this very messy business are caregivers like myself who have no option but to keep their adults with severe disabilities at home.  I remember what it was like in 1972 for people with severe disabilities without a destination or  resources to be fully integrated into their  community so that's why I was crying in the principal's office. I was crying because I knew that's the direction in which she was heading.

What Bad News Bears...

Back in December of 2014, I sat in the Hamilton County Developmental Disabilities Service's (HCDDS) planning meeting overwhelmed with grief hearing about the change in direction of their mission serving children and adults with special needs.  I'm speaking of the population of adults and children who are severely disabled, delayed, unemployable, and  relying on "traditional specialized services" to live in quality, safety, and dignity.

 The reason why I was the only parent there, I suppose, is because the meeting took place when most family caregivers and community advocates are coming home from work -- caregivers who already have exceeded their personal and sick time at work meeting the challenges of raising children and adult with disabilities requiring 24/7 care. I can go. They can't.

I am a stay-at-home and full-time caregiver for my now 21 year old daughter. She is small enough to transfer so I can still lift her wheelchair in the car and take her places without facing the barriers that the majority of families and advocates face trying to advocate for their children and adults. I left the workplace in 2000 after my daughter aged out of Redwood Daycare  and could not find a  replacement after-school daycare in Ohio that had medical and therapy staff to meet her needs.

According to the new HCDDS  mission, to remain in compliance with the State of Ohio due to the interpretation of the "Olmsted Act 1999 and "Employment First Initiatives," HCDDS  can only help people who are employable.  Due to funding cuts and rerouting of funds from the State of Ohio, they can only help people who are able to undergo special training by the State of Ohio and their agencies.  They can  no longer provide traditional specialized services on-site that once safely bridged a medically fragile population into the community through daycare, recreational rehab, and workshops.  Their traditional support organizations and services will be no more.

It  all started with the Olmsted Act 1999 ruling guaranteeing our family and friends w/ disabilities to be fully integrated into their community. No one is quite sure who in Ohio has chosen to react to this ruling and why it's being used to take away traditional specialized services -- services that in many cases were identified through this thing parent caregivers and advocates  call "choice."  No one has seen any increase in federal, state, and local funding for how these changes will take place, either.

For the population of families and friends with severe disabilities requiring 24/7 care and  currently receiving specialized services appearing to "isolate" or "segregate" them from their community, the Olmsted Act is being interpreted as an excuse to de-fund current  support agencies and services that many families still rely upon.  So any program or service not meeting the  Olmsted Act ruling will go unfunded.  It is unfortunate that a ruling created to protect our family and friends, to help integrate them into community,  is being interpreted in Ohio to take away valuable funding and resources for those in need of specialized services for respite, daycare, overnight medical care, recreational rehab, transportation, and other important services that give purpose, quality, and dignity.

 It's  happening too quickly to feel the impact right now locally, but after attending the HCDDS Planning meeting early in December the writing on the wall was clear:

 1) Children and adults in Ohio are only valued if they are employable or if they can live without traditional specialized 24/7 care;

2) Parent and extended family caregivers, agencies like HCDDS, and service coordinator/advocates are not valued in the State of Ohio because they are never given time or additional budget to act,  prepare, and plan for the changes impacting this population of children and adults with special needs requiring 24/7 care.

What compounds this situation is that HCDDS  operates on a budget that has not increased in the past 11 years, yet their caseloads have increased by 80% creating longer waiting lists for many different services.  With no additional funding coming from the state or locally,  the waiting list for waivers, for example, for people requiring 24/7 care and specialized care has not budged since 2008. Ironically, children and adults on the HCDDS waiting lists, will be staying at home and not participating in the community which puts us right back where we were before the IDEA ACT 1973.

With every year, every email, and every meeting I've attended,  the bad news has been coming swift and steady from the State of Ohio and locally.  Even with the many spins I hear  "how this is really great news for Ohioans with disabilities," it's still means less funding locally.   Less funding locally means services dwindling locally which means there will be less options for people like my daughter who has been on a waiting list for services because there is no money. 

Just in the past 9 months, I have received a thousand email messages drawing my attention to meetings, workshops, bootcamps, resources, and other training programs that will help me be a better advocate for my daughter and help me find services.  For each one I attended, I learned that unless my daughter can take a bus independently and attend a special workshop for job training, count her change, and do the most menial task, she is not valued for being who she is -- a 21 year old with a smile that will light up the room if you say hello or give her a high five. A 21 year old who likes to be pushed in her wheelchair on a dance floor with disco lights and on a basketball court by her

Cheerleader buddies.

This summer, my mailbox is full with even more invites to meetings from which  experience means more bad news from the State of Ohio taking away more services that took over 30 years to create and put into action for children and adults with disabilities.  After 30 years developing  the agencies  offering specialized services, programs, and workshops, imagine what the lines will look like when those services are taken away.   Where will our adults and children go? According to the Olmsted Ruling, into the community -- a community where the big agency once perceived as the "go to place" for all things "disability" hasn't increased funding in 11 years.  A community where there is an 80% increase in caseloads and growing.    According to the Governor, into jobs due to his "Employment First Initiative."  An "Employment First Initiative" that means everybody means everybody, including my daughter because that's where the money is going -- job training.

Very recently I receive another invite to yet another workshop.  More bad news, I'm sure.  Notice that on the bottom is a disclaimer, "This session will not address county-specific concerns." Well, most of the issues here locally rest upon what is happening at the state level.  Most of the specialized services we relied upon over the years locally were provided in part through state funding. So why can't that be addressed? 

More On Guardianship for Immediate Families

Under the new Supreme Court Rule 66. Applicants who are related to a ward by blood or marriage may be excused from taking the classes by the Court

That determination is made at the guardianship hearing. For guardians appointed before the rule went into effect (ie. June 1, 2015), the Court exempted all previously appointed guardians from those classes.

Guardianship Ruling

Information Provided By Attorney Franklin J. Hickman, The Supreme Court issued extensive new rules affecting all guardians in Ohio, effective June 1, 2015. Major highlights are summarized below. The full text of the rule can be found here.

Pre-Appointment Training (66.06)

Every guardian, both existing and newly appointed, must attend a six-hour course on the fundamentals of guardianship. The content of the training is set by rule. The Supreme Court is preparing a curriculum and resource materials, which will be presented at regional trainings beginning in late June 2015. These sessions will have separate tracks for  guardians and guardians who have had professional training, such as lawyers or social workers.

Each Probate Court will develop and present its own on-going training program on fundamentals.

Guardians appointed on or prior to June 1, 2015, will have one year to complete the training. Guardians appointed after June 1, 2015, will have to complete the training within six months of appointment.

Continuing Education (66.07)

All guardians will have to complete a three-hour continuing education program, which is approved by the Supreme Court. Guardians are required to provide documentation of compliance on or before January 1 annually.

Courts will not make further appointments for guardians who fail to comply with the continuing education. If a guardian fails to comply for three years or more, the guardian will have to take a six-hour fundamentals course. Continued non-compliance could result in the guardian being removed.

Criminal Background Checks (66.05(A)(1)) Courts must ensure that all guardians have had a criminal background check. Attorneys in good standing with the Ohio Supreme Court are exempt from this requirement.

Annual Plan (66.08(G))

In addition to the regular reports, guardians of person must file an annual guardianship plan with the Probate Court.  Guardians of estate may be required to do so by an individual Probate Court, as well.

The annual plan must state the guardian's  goals for meeting the ward's personal and financial needs. The fundamentals course includes guidance on how such plans should be developed and the content of the plans.

List of Responsibilities (66.09)

The new rules spell out with greater clarity the duties of guardians.

Among these duties is a person centered planning which requires guardians to focus on the needs and wishes of the ward and to strive to balance a ward's  maximum independence and self-reliance with the ward's  best interest.

Guardians must meet with their wards at least quarterly, communicate privately, assess the ward's needs, and document their observations.

Complaints (66.03(B))

Courts must establish a process to receive and store comments and complaints made on the performance of guardians. Copies of complaints must be provided to the guardian involved.  The Court must notify the person making the complaint and the guardian of any disposition of the comment or complaint

Empowering Families Workshop in Cincinnati

FRIDAY, MARCH 13th 2015

Registration 8:00-9:00 am 9:00 am – 3:00 pm


Find Special Needs Resources Access community resources, meet special education advocates and network with others who are facing similar challenges. Attend Workshops and Resource Fair

The conference includes speakers, community agencies and companies specializing in:
 Medical Support
 Community Programs
 Disability Services
 Recreation
 Special Education
 Medical & Behavioral Supports
 Home Health  Financial Planning

 Plus More!

Keynote Speaker Gary Tonks Executive Director Arc of Ohio

Transition Boot Camp Back

Would you like to learn more about the transition from pediatric to adult health care for your youth with development disabilities (DD)  or with complex medical needs? Are you a parent, caregiver or professional working with youth and young adults who have developmental disabilities (DD) and/or complex medical needs?

In this session you will learn about differences between pediatric and adult healthcare, learn how to prepare for successful transition to adult health care, and learn about common health conditions and important health habits in adolescents and young adults with DD.

Here is the information:

Feb. 11, 2015 6-8 pm

Cincinnati Children's Hospital Medical Center (CCHMC)
5th floor Conference Center
3430 Burnet Avenue (Not Main Building, but down the street)

Dr. Jason Woodward and Dr, Abigail Ny, CCHMC/UC will give updates to caregivers/young adults with disabilities who are transitioning or have transitioned to adult care.

Register online at  -  it's free!

CONTACT:   Emily Beltz 513-803-0653 or email

Ohio Families fight community-care plan

  In  Families fight community-care plan, we learn about how Ohio  is responding to CMS guidelines alleging that current services  are  "segregating" individuals from their community.

Considering our history segregating millions of people of color from economic mobility in their communities using inhumane and discriminating practices,  I think it's a very inappropriate use of the word. What our families and friends need is A DESTINATION that is safe,  dignified, and state-certified   SO THEY CAN be included in their community.

Ironically, we are forcing a population of severely disabled adults back into their  homes which segregates them from their community.  Many people with disabilities -- the ones who are going without resources, services, and waivers so they can participate in their community -- are already segregated from their community because all the state and locally certified workshops lost their funding.

I'm speaking about the people who cannot deliver commencement speeches on their communication devices and self-propel their wheelchairs  into college or the workplace.  The people who really need a safe place to go -- a place that was funded by both federal and state government.   Once again the federal and state government are relying on local governments to deal with the compliance issues they created so they can cut more taxes at the state and federal level.  If you live in a community where levies haven't increased in 11 years, it's called passing the buck.

Speaking Up About Changes in Ohio


Please take a moment to read through this email and maybe help us advocate for those with significant disabilities.  Input on this issue is only being taken until January 23rd.

There are changes that are being made at many levels that are directly impacting families with loved ones with disabilities.  Bill and I are asking you to consider providing input to one part of the changes that are going on.  We just attended a meeting Saturday presented by mainly the Ohio Department of Developmental Disabilities.  All states are required to provide transition plans to the federal government (Centers for Medicare and Medicaid Services (CMS)) to address people receiving “Home and Community Based Waiver (HCBS)” funding.  There are 34,000 people on waivers in Ohio. Our son, Robby, is lucky enough to have one of those waivers.  There is another real issue for those that don’t even have a waiver.  Their options are even more limited.

Much of the wording we heard can sound OK on the surface such as, “CMS made the changes to support enhanced quality in HCBS programs, and to ensure that individuals have full access to the benefits of community living and participation.”  The recommendations  for implementation will drastically change the options that people with disabilities will have.  The interpretation is that no waiver money can be used for any “segregated setting”.  That can be applied to most of the current placements (day-programming and living settings). We totally support the idea of choice.  Many of us with loved ones that have significant challenges feel that these “segregated settings” are more appropriately seen as “specialized settings” and are the best placements for our loved ones.  Robby although having many wonderful strengths such as curiosity, tenacity, energy, a sometimes warm nature also has significant cognitive disabilities (severe MR, developmentally about 18 months), is non-verbal, ambulatory but unsteady, multiple daily seizures, potential anaphylactic food allergies, wears diapers, has no understanding of danger, can exhibit behaviors such as screaming, biting and throwing objects.  Having him in a setting with people trained to address these challenges is paramount to his safety.  How could we as Robby’s parents have him go to a place that is not knowledgeable of dealing with his challenges?  There is no additional funding to provide an aide to be with him through the day in these “integrated settings”.  If Robby does not have a safe place to go after he leaves the wonderful Hamilton County Developmental Disabilities’ (HCDDS) School in May of 2016 we will be forced to keep him at home.  Robby wants to have something to do and a place to go.  We are stepping back 30 or more years when people with disabilities didn’t have a place to go. This is happening for others now for other reasons.

There are other issues that are playing into changes for those with disabilities such as no increase in funding for HCDDS in over 12 years, the Department of Justice’s reaction to the “Olmstead Decision”, Ohio’s “Employment First”, and mandated minimum wage to name the one’s we are familiar with.  This feedback is specific to the DoDD Transition Plan to CMS.  

Please consider emailing:

DoDD Website for more information:
There is a “share your feedback” link but It’s unclear whether that is to the same place as the email above

We would not want to see someone in a “specialized setting” that did not want to be in one but don’t take the option away from the many of those of us that want it. 

Just some food for thought: most people support St. Rita’s School for the Deaf,  Special Olympics, High Schools that require entrance testing such as St. Xavier or Walnut Hills.  Please consider our “specialized” choices as acceptable.

Thank You and God Bless,
Elise and Bill Fessler

Journey Through the Senses...

Elisabeth was diagnosed with ACC/CP/SQ/CVI.   Only through the retrospective of time we saw the long term benefits of  sensory stimulation during her infancy to wake up her brain.  It all began after her evaluation at the Center for Children with Developmental Disabilities (CCDD) through Children's Hospital. We were told early on our infant would experience multiple handicaps and severe mental retardation.  Her delays would be life-long in gross, fine, speech, cognitive, and motor development caused by extensive brain malfunctions compounded by ACC (Agenesis of the Corpus Callosum) and birth trauma which we learned later after deciphering causes for cortical visual impairments.

Fortunately, we found a way to connect to Elisabeth early on.  By exposing her to sensory stimulation and experiences, we hoped to jump start her brain  at a recommendation of three specialists, Ann Ruthnaswamy Richards, Gina Carroll, and Sonya Oppenheimer. They all worked collaboratively through their respective organizations (Children Hospital of Cincinnati and Cincinnati Association for the Blind) and told us Elisabeth was going to get very spastic around 3 or 4.

 They encouraged us to use this time in her early development to take advantage of waking up the sensory/muscles/cognitive/motor/communication functions in her brain by providing sensory stimulation to help her  communicate with us.  They said it would create a "memory" for her and open up new pathways in the brain.  Example, flashlights on the ceiling to aid in her visual tracking (visual), pompoms to brush/stimulate her fingertips (touch), scents to stimulate olfactory (smell), coated Q-tips to roll on her tongue (taste), recorded sounds (auditory) etc.

Ann Ruthnaswamy Richards, Director for the Parent Infant Nurturing Group (PING)  suggested we make a sensory board out of plywood and 2x4s to interact with Elisabeth rolling or positioning her gently. Moving things on the plywood resonated through her body increasing her sensory awareness. Since Elisabeth had no head control, these exercises triggered a response in her. We would time how long she would try to use her head to see something. We were happy if it was only a few seconds. 

Actually Ann and Elisabeth's Dad invented the first "baby gym" using small PVC pipe overhead attaching it to the board. Gina Carroll, from the Cincinnati Association for the Blind,  introduced us to simple toys that encouraged "cause and effect" and "visual acuity." Sonya Oppenheimer, from the CCDD,   introduced us to communication buttons, homemade switch toys, and anything that would kickstart cognition development.  

Basically, our family time centered around creating our own fun therapy sessions through the help of these three women. It allowed Elisabeth and her family  a two-way path to connect.  She was teaching us how to communicate with her and we were responding to her. We learned as a family through her responses, what direction we needed to go to continue her own personal development.

Over the years, Elisabeth started connecting to us "emotionally" responding in a way a baby responds. While her physical and cognition development is still behind, we think this therapy helped stimulate her own personal "emotional" development." What are some of the things you do to stimulate your child's personal cognitive, physical, emotional development ?

The Writing on the Wall in Ohio is L'Arche Internationale

The writing is on the wall for our friends and families in Ohio.

The new "employment first" initiated by Ohio Governor Kasich, an Olmsted Act ruling from 1999, and changes in the mission of the Hamilton County Developmental Disabilities Services (formally MRDD) only value our family and friends if they are "employable" and can live without traditional specialized services.

What further compounds this is that funding for traditional specialized services that do not complty with Olmsted and "employment first" initiatives are losing funding from federal, state, and local level. So where will these people go when all the funding and support is gone?

In Hamilton County Ohio, you are only valued as a human being if you can work or do not require traditional specialized services.

We can do better  for this population of our family and friends.


When Wheelchairs Are Not a Cross to Bear in life ...

Yes, I can understand when a person's life has been altered after an accident or surgery or a disease attacks their  body, it can be a game changer.  Ask anyone who had to use one while recovering from surgery or car accident or illness and they'll give you an earful. It is a navigational nightmare using one in a home and out in the community and I can totally empathize with their woes and challenges getting to and from places.  I don't exactly enjoy lugging a wheelchair  in and out of the car or transferring my daughter into the car in the middle of a thunderstorm, but it's what we do.  So let's try to do it with dignity and respect on behalf of the person who needs help regardless if their condition is permanent or temporary.

For my daughter and other children who have conditions that are permanent, it is not a "cross to bear" or a "death sentence" to be stuck in a chair.  The only real burden here for  families without financial means for a wheelchair lift, respite, nurses aides, etc., is that not having these things creates barriers. It prevents them from being the family they want to be.  It prevents the person in the wheelchair from being the person they were meant to be.   Since wheelchairs are  their only path to their independence, we must learn to how to make life more accessible for them.  Wheelchairs give our family and friends dignity and quality life.  It gives them purpose. It doesn't define who they are, it defines what they are capable of being. Without a wheelchair, my daughter would not be able to attend school, cheer-leading, or become involved in the community.

So the next time you see me with my daughter, please feel free to offer to help her.    Somedays I can manage fine, but it's okay if you ask her if SHE needs help.  There are other days you will find her appreciating your offer to help.  She may even smile and reach out to say hello.  And afterward, I hope you feel good about reaching out to help another person continue living their life with  dignity and respect they deserve.

Happy Holidays.

Olmsted Act and Employment First Initiative is Bad News in Hamilton County Ohio

I sat in the Hamilton County Developmental Disabilities in Ohio Planning meeting last Monday and became overwhelmed by grief over the change in direction of their mission serving children and adults with special needs. I'm speaking of the population children who are severely disabled and delayed and unemployable. The population that relies on "traditional specialized services" because they cannot be fully mainstreamed into the community.  It appears our children and adults in Ohio are only valued if they are "employable" or if they can live without traditional specialized services due to changes that were introduced by Governor Kasich of Ohio with his "Employment First Initiative" and the Olmsted Act ruling.

It's all happening too quickly to really understand how all these changes will directly impact our family and friends with special needs. It is hoped it is explained why HCDDS was not permitted to increase their budget over the years even though their caseload increased by 80% particularly to prepare for this "employment first" mandate which has been further compounded by "Olmsted Act" ruling.

In Ohio, there is a population of families and friends who are losing specialized services due to a loss in funding at the federal and state level because of the Olmsted Act. This Olmsted Act 1999 ruling guarantees that our family and friends will have placement in their community. Unfortunately, it's being used to take away valuable resources from other people who really need specialized services to maintain their independence and quality life.

Currently federal and state are claiming they no longer have to fund specialized services because it "isolates" and "segregates" children and adults from the community. Basically they are placing that "one-size fits all" template over a very large population of children and adults with very different special needs and disabilities. However, there are many children and adults who required specialized services BECAUSE it is the only way they can participate in society. Some have needs that are so severe, they need highly specialized services.

Where will they go? In Hamilton County, clearly you are only valued if you are "employable" according to this new HCDDS mission. If you are not employable, ironically you cannot not be integrated into the community.

Making Spirits Bright!

I look forward to the holiday sensory overload to stimulate our daughter, who is now 20, and what better time of year than the holiday festival of lights season to do this? Our society certainly is not at any loss for how we celebrate this season of hope throughout December so we just bundle her up, load her wheelchair into the car, and set out to go on an adventure. Of course, not all children and adults with special needs can tolerate overloading the senses throughout the holidays.  For some parents it's an absolute nightmare to take their children out into the community or places of worship due to some pretty heavy sensory issues.

There is a whole host of holidays beginning with Advent which is a celebration of spiritual renewal and preparation. Some of Elisabeth's friends celebrate Diwali, Hanukkah, and Kwanzaa. Hanukkah we know begins December 16th this year which is a big festival of lights, hope and renewal, jelly donuts, bread, and potato pancakes.   For Elisabeth, it's that one time of year guaranteed to take her on a journey through the senses beginning with the lights on the houses and candles on advent wreath and menorah. There is the overwhelming smell of cookies and bread baking, candy canes dipped in hot cocoa, and whatever recipes we can rustle up together as a family.   She loves the sound from the carols and bells ringing and the warm and cold feeling from the hustle and bustle of people she loves coming in and out of her life wherever we go. She loves to visit her neighbors bringing cookies, preserves, and whatever canning specialties we have in storage.

It's the one time of year I really enjoy taking her to shopping malls, skating rinks, and concerts because people are so responsive to her needs.  She is usually greeted with cheery hellos and laughing (sometime crying) children.  Sometimes, people come up to us and ask, "Aren't you concerned she's cold?"  One time, a very concerned ice rink employee skated passed us motioning to take the wheelchair off the rink. Calmly, I explained that this was the only way she could enjoy skating and I would be willing to sign a release not holding them responsible for any accident we might incur. I also pointed out that little kids see her as a "safety" feature since they like to use her wheelchair to balance out when they feel like they are going to fall. It also keeps me from embarrassing myself from falling on the ice which I am more likely to do without Elisabeth's support!

It’s the one time of year guaranteed to lift her spirits by the way she physically and emotionally responds to all the winter  traditions and festivities that most of us take for granted. She knows there is something very special  about this time of year and we truly enjoy watching her moving through this wonderful awakening sensory experience.   Even when we had to be in the hospital over the holidays when she was younger for her surgeries, she tolerated being there because it was full of decorations, music, and holiday cheer.

Happy Holidays!


There have been several pieces of legislation passed since 1973 guaranteeing the education rights of children with special needs.  First, there was important legislation passed in 1973 called the Rehabilitation Act, giving students with special needs and disabilities free and equal access to public school education. In 1975, the IDEA Act which was formally the federal  Education for All Handicapped Children Act or (EHA)  passed requiring all public schools to evaluate handicapped children and create an educational plan with parent input that would emulate as closely as possible the educational experience of non-disabled students.

Since it is the responsibility of each state to uphold the federal law, each state passes their own legislation outlining how they are going to guarantee, protect, and safeguard the education rights of each child with special needs.   Remember, before you head into that initial special education  planning meeting with your school district,  take a look at these protections and safeguards that were created for all our families and friends of children with special needs.

The Cradle Will Fall - Transitions Online

This story is heartbreaking to read. 

We need to give our parents real tools so they can be the parents they were meant to be regardless how a baby comes into the world. We need to continue educating our legislators and representatives that a humane society is what we should all be working towards. We need to create a society that truly values all aspects and responsibilities of parenthood. With in the increasing numbers in children testing for ASD and other issues that impede or delay their development, we need to increase funding as well.

We need to tell our stories to the legislators, governors, and local representatives who do not see that the growth in disabilities and delays go hand in hand with a growth in funding.  We need to write directly to them, telling the stories about our children who are advocating for self determination and the stories about advocating for children who cannot self-determine their life.

Survival of the Fittest

I always tell people our survival  is a miracle.  Different things happen to everyone every day but somehow we manage because all those prayers that are said on our behalf go into this big well where we go to get revived, rejuvenated, and restored.  Some of us even get re-booted.  Or at least some of us.

It's easy to demonize Jillian McCabe rather than accept that we have a crisis in this country for people  going without ongoing mental health support services, not only when they hear the diagnosis of MS, cancer, autism, or brain damage, but when they try to live with it everyday.  She already had a track record for mental illness and depression so she needed full-blown support.  Support to  take on her journey.   Support that will maintain a  job, pay  medical bills, and still provide for quality and purposeful life for children.

This business of raising kids with special needs, the kids that require 24 hour care, isn't for everyone which is why we can't gloss over the messy business of caregiving. We have to be really honest about our reality raising our children  which is why I suppose people terminate pregnancies when they are told about issues with the ultrasounds and genetic tests.  Maybe they see what we're not seeing.

I think it's even more difficult for parents when they find out after the child is born and missing milestones.  When the diagnosis and prognosis drops like a piano into pieces from the ceiling into their living room.  What kind of mental health support services are they given today?  What kind of hope are they given?  Maybe our beautiful little boy London would be alive today if  his mother received early infant to childhood intervention, parent education, therapy, and other support services for her journey while she was on her way to the well. That well where all the prayers go that are said on behalf of our children.

Getting Back to Feeling Normal...

We’re between a rock and hard spot all the time, aren't we? Always  looking for that place to feel normal again.   Whatever that is.

This past weekend driving out-of-town for a school competition, I swore that it would be the very last car ride with my daughter, now 20 years old, because her “discomfort” level is just unbearable  to human ears and because it’s dangerous to take her out of the seat belts to comfort her. I say this every time we get into the car for trips longer than 20 minutes.  I say the same things over in my head. Why do I subject her to this if she doesn't like driving in the car?  She's not in pain and we tried prescription medicine.  Nothing works. We figured out she's just not comfortable in the car without her wheelchair.  She can be on a school bus for hours and not complain. 

She can be happy and smiling and even laughing. We can be listening to an audio book or singing along to song having a great time in the car.  We can be quietly riding to our destination.  Then suddenly, out of the blue, I see that expression change to a grimace and we know what comes next.  And for the next 15 to 20 minutes off and on throughout the duration of our travels, we shuffle around the mini-van playing musical chairs, musical drinks, musical food, and  musical toys trying to find a way to make her more comfortable.  We wrestle with her spasticity  trying to make her comfortable. We wrestle with our conscious.  We wrestle with our roles as her caregiver and parents. We wrestle between the pain and comfort.

By the time I arrive at my destination, wherever it is, I really don't feel like talking to anyone. Even if the ride is out to visit a family member for a pleasant holiday, it takes me a long time to "assimilate."  It's difficult to shift  from “that mood” of feeling so inadequate as a mother  to being in "that mood" where I am genuinely interested in what other people are doing. There was a time I remember being genuinely interested in what other people are doing, but sometimes I feel like zombie mom. 

Sometimes I am thankful for our "sanctuary.  You know that place? That place that separates us from the rest of the world in stadiums, movie theaters, and restaurants. The designated Wheelchair Area where we park and just be who we are -- a family. I leave my worries there, thankful  that Elisabeth and I have a place to let go of the tension and anxiety from the drive. A place where I can just be with her without trying to figure out  how to make her comfortable.

One time, a friend from church saw us at the baseball game sitting in the "wheelchair deck" and came over asking if they could take Elisabeth "for a walk" around the stadium so I could get  a break.  Then, they came back with a glass of wine!  Snap! I was back to feeling normal!   Whatever that is!

If people think I am being rude for not talking to them when I first arrive,  I apologize.  But, I hate apologizing because  I never know what to say. I'm sorry? I'm sorry I can't be in a better mood because I just spent the last 3 hours trying to make my daughter more comfortable traveling?  I don't want to share with others  the level of stress or anxiety that goes on when I'm trying to make her comfortable.  And I'm sure she doesn't want to hear it either.  I tend to carry way too much emotional luggage as it is being her caregiver, I don't want a guilt trip.  I don't want to hear what an inspiration I am or how tough it must be.  I don't want sympathy.  I don't want to wear my daughter's disability label and neither does she.

We just want to get back to "normal."   Whatever that is.