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 ?

(re-published from earlier article.)

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!

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. 

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.

Dear Governor Kasich of Ohio...

John Kasich, Governor

Riffe Center

77 South High Street, 30^th 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 

Keywords: 

developmental disabilities

DD

The Arc of Ohio

Dayton

Canton

Cleveland

Columbus

Toledo

Cincinnati

Marietta

- See more at: http://www.disabilityrightsohio.org/news/dro-arc-ohio-hold-dd-family-focus-groups-throughout-october#sthash.d52PbNQW.dpuf

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

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