Journey Through the Senses...



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

Fortunately, we found a way to connect to Elisabeth early on when she was in infant exposing her to sensory experiences to jump start the brain again at a recommendation of three specialists, Ann Ruthnaswamy Richards, Gina Carroll, and Sonya Oppenheimer. They all worked with this very special population of children with special needs 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 as a way for her to communicate with us.  They said it would help 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 2 by 4s to interact with Elisabeth rolling or positioning her gently and moving things on the plywood to make gentle noises to resonate through her body, again to wake up the sensory in her. While 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 Bline,  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 cognitive 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 since physically she still had limitations. While her physical development is still behind, we think this therapy helped stimulate her own personal "emotional" and "cognitive development." What are some of the things you do to stimulate your child's personal cognitive, physical, emotional development ?

Time to Make Some Noise!

A few weeks ago, I sat in the Hamilton County Developmental Disabilities Service's planning meeting overwhelmed with grief over 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 working during the day. I am a stay-at-home caregiver for my 20 year old daughter. She is small enough to transfer, I can still lift her wheelchair in the car, and I can take her places without facing the barriers that the majority of families face trying to advocate for their children and adults.


Due to changes that were introduced by Governor Kasich of Ohio with  "Employment First Initiative" and the Olmsted Act ruling, the budget cuts have been swift and steady coming down the road for adults and children with severe disabilities and how they will be served in the future through health care, agencies, and support organizations throughout Ohio.  It's all happening too quickly to feel the impact here 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 services; and 2) Parent and extended family caregivers, agencies like HCDDS, and service coordinator/advocates are not valued because they are never given time to act,  prepare, and plan for the changes initiated by politicians impacting this population of children and adults with special needs.


I am learning it all started with the Olmsted Act 1999 ruling guaranteeing that our family and friends will have placement in 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 chosen through this thing parent caregivers and advocates  call "choice."  The choice  that allows our adults and children to be the person they want to be according to their own special ability.  No one has seen any increase in federal, state, and local funding for how these changes will take place. For the population of families and friends with severe disabilities receiving specialized services that appear to "isolate" or "segregate" them from their community, the Olmsted Act is being interpreted to take away their safety net and de-fund their support agencies and services. So any program or service not meeting the "employment first" initiative or Olmsted Act ruling, will go unfunded. It is unfortunate that a ruling created to protect our family and friends is being interpreted in Ohio to take away valuable funding and resources for those in need of specialized services for respite, overnight medical care, recreational rehab, transportation, and other important services that give purpose, quality, and dignity.


While federal, state, and local politician are all patting themselves on the back with one hand cutting taxes funding programs or services "interpreted" as isolating and segregating children and adults from the community, on the other hand, they are creating a one-size-fits-all template for "disability" that will further marginalize a population of adults and children who will never fit under their template. For example, in Hamilton County according to the new Hamilton County Developmental Disabilities mission, to remain in compliance with the State of Ohio, they can only provide for  people who are "employable" and live without the traditional specialized services that once safely bridged a  fragile population into the community. Their traditional support organizations and services will lose funding it they are not in compliance with the state.  What compounds this situation is that HCDDS (formally MRDD) has been operating on a budget that has not increased in the past 11 years, yet their caseloads have increased by 80% creating longer waiting lists. 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.



Scheduled for January 10th, 2015, is a meeting explaining the new rules for Medicare and Medicaid services and what the state is doing to make sure Ohio is in compliance. I called the Ohio Department of Development Disabilities to ask how this information is getting out to the population impacted by the changes. I was directed to see their webpage. Since the delivery of these important services will look very different and will greatly impact the lives of children and adults in our community, I am hoping you can help me get the word out to the caregivers and advocates taking care of a family or friend requiring 24 hour specialized services and have been on a waiting lists for several years. The meeting is taking place at the Hamilton County Beckman Adult Center,2600 Civic Center Drive, Cincinnati, 45231. Can you help me get the word out to family or friends receiving services through Medicaid and Medicare to encourage them to be there? If they are unable to attend, which is understandable if they don't have a wheelchair lift or means of transportation -- will you offer to advocate for them?


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.


L'ArcheUSA

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!

NOT JUST A GREAT "IDEA" BUT THE LAW OF THE LAND



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. But the minute we take her out of the chair and put her into the car seat, all hell breaks loose after 20 minutes into the ride.  It's intermittent and unpredictable.

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. 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.

Dear Governor Kasich of Ohio...

John Kasich, Governor
Riffe Center
77 South High Street, 30th Floor
Columbus, OH 43215


Dear Governor Kasich,

I am a parent advocate for my daughter who is 20 years old and severely impacted by spastic quadriplegia, agenesis of the corpus callosum, scoliosis, and cortical visual impairments.  Since birth, she has had global delays in motor, speech, and cognitive development.  She is non-verbal.  She needs 24 hour care.  She's in diapers.  She cannot chew her food. She has been on the Ohio waivers waiting list since 2009.  She cannot “self-determine” or plan her life. Her two advocates and caregivers are her parents.  She requires specialized school services through Hamilton County DDS’s Bobbie B. Fairfax for all of her education needs.  After graduation in 2016, she will have no place to go because she’s on a waiver waiting list that hasn’t moved  and there is no funding available through the one agency, HCDDS, that once provided specialized services for adults like her with disabilities. 

While I applaud you for believing everyone has something to contribute according to their ability with “Employment First,” our daughter is not employable. In fact,  her life after graduation in 2016 looks grim because "Employment First" and Olmsted Act are working against each other.  The “Employment First” values her only if she is employable and if she is “self-determined.”  Given her medical documents, school records, IEPs, and other important assessments, our daughter requires 24 hour care for assistance, communication, mobility, feeding, bathing, and toileting which is currently being met at school and home.  How can she be included if there is no specialized program or service to help her?

As for the Olmsted Act, specialized services that allow our daughter and young adults like her to be included in Hamilton County have pretty much dried up.  I read the interpretation of the Olmsted Act submitted to your office by Disability Rights of Ohio in July 2014 suggesting to close more respite and daycare facilities because it violates the Olmsted Act. If the programs are closed because they are viewed as "segregating" a population from the community, then how will those people be served in their community locally? Most places here in Hamilton County have waiting lists and isn’t that what drove parent advocates to look for specialized services?  And is “segregation” really the right word here? Most services are “segregated” in the medical field. For example, sports medicine. Athletes receive separate services for therapy and rehab. Why are people with disabilities not given the same options for specialized care as athletes? Not everyone is qualified or specialized to work with this population of adults whose “self-determination” is advocated by their parents and guardians.   It has never been clear to me why Supreme Court rulings are used to take away “specialized” services rather than preserving “specialized” services. 

The reason I understood parent advocates like me had options for specialized care was because there was no single template under which all our family and friends with disabilities fit.  I agree, some people probably don’t belong in the shelters and can contribute something. But how are we going to transition this population if there is no funding? The letter also suggested closing the ICF/IID, sheltered workshops, and day centers to open the waiver list.   I call this "robbing Peter to pay Paul” even though our daughter has been on a waiver waiting list since 2009 when we first found out about waivers.  Without a waiver, there is no opportunity for her to transition into the community through recreation services unless it she pays for it. How can she do that if she’s disabled and unable to work?
                    
For the last ten years, I have been watching in disbelief the funding and resources from the federal and state disappear putting pressure in Hamilton County to serve more people with less funding and less direct services.  Why wasn’t the Olmsted Act ruling used to promote funding for specialized services? Before we take away, shouldn’t we look to make sure there is a safety net?  If  Hamilton  County Commissioners understood the impact of the ruling, I’m sure they would have been more supportive of HCDDS that traditionally integrated millions of adults with disabilities  into the community through housing, job training, and recreation rehab.  It is unbelievable that anyone would challenge parent advocates like me, scrutinize agencies like HCDDS and support organizations currently serving the population of aging adults with disabilities with the little funding they have left after all the federal and state funding cuts.  It’s hard to believe that anyone working for the federal or state government cannot see the pressure mounting on an area like Cincinnati where the HCDDS-operated adult centers closed their doors to our daughter and others like her due to millions of dollars cut in funding.  Can you not see the irony here?  



Every politician from Washington DC to Ohio to Hamilton County appears to be making decisions on my daughter's behalf believing she can “self-determine” her life and choices.  I have medical documentation that proves she needs advocates – the people who know her ability.  Will you advocate for her?  Will you please convince the representatives and legislators that they cannot rely on local government  to continue providing quality specialized care for constituents who are severely disabled, cannot work, and need 24 hour assistance for basic needs? 

IT'S TIME TO MAKE SOME NOISE! BE HEARD!

Disability Rights Ohio and our advocacy partners recently began talks with state officials to address concerns about widespread segregation in Ohio’s developmental disabilities system. It is our hope that these talks will produce a plan to provide additional opportunities and true choice for individuals with intellectual and developmental disabilities to live, learn, and work in their own communities. 
People with developmental disabilities and their families face many challenges as they seek services that provide a safe, fulfilling life for themselves and their loved ones. Some individuals would like to live and work in the community with the proper supports but face roadblocks. Others are happy where they are and worry about changes that might take them out of an enviroment that feels secure. During the month of October, Disability Rights Ohio and The Arc of Ohio will be traveling the state, hoping to hear about these concerns at seven regional forums. We invite individuals with disabilities and their loved ones to attend these meetings. Your input is essential as we move forward to change this system.


Dayton

Wednesday, October 8, 2014
6:30 p.m.
Centerville Library
111 Spring Valley RoadCenterville, OH 

Canton

Saturday, October 11, 2014
10 a.m.
Stark County District Library
Jackson Township Branch
7487 Fulton Dr. NW
Massillon, OH 44646

Cleveland

Wednesday, October 15, 2014
6 p.m.
Cuyahoga County Public Library
Parma Branch
6996 Powers Blvd.
Parma, OH

Columbus

Saturday, October 18, 2014
10:30 a.m.
Columbus Metropolitan Library
Linden Branch
2223 Cleveland Ave.
Columbus, OH

Toledo

Wednesday, October 22, 2014
6 p.m.
Toledo-Lucas County Public Library
Maumee Branch
501 River Road
Maumee, OH

Cincinnati

Saturday, October 25, 2014
10:30 a.m.
The Public Library of Cincinnati and Hamilton County
Madeira Branch
7200 Miami Ave.
Cincinnati, OH 

Marietta

Tuesday, October 28, 2014
6 p.m.
Washington County Public Library
New Matamoras Branch
101 Merchant St.
New Matamoras, OH 
- See more at: http://www.disabilityrightsohio.org/news/dro-arc-ohio-hold-dd-family-focus-groups-throughout-october#sthash.d52PbNQW.dpuf

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  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 own personal development.  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.
Small and incremental at times. But we found a pathway to connect to her. We found her "happy" state."  When she only fluctuated between responsive and unresponsive, we were relieved to discover the things that made her really happy.

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  exceeding ADA expectations. Politicians  are not functioning in Elisabeth's "happy state" while debating, defining, and funding 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 matching up to their own child in ability and development is impossible.  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."

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
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Great for Parents and Teachers!

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

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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.