One thing I truly value about Hamilton County MR/dd is the (tremendous) availability of knowledgeable healthcare professionals, therapists, and special ed. teachers who help parents make those necessary connections to becoming their child's best advocate. And mostly, I appreciate the support and encouragement I receive from teachers and therapists because when I feel like I'm riding a runaway train, they slow you down to take you back on the track.
Just yesterday, I received a home visit from the OT/PT team through Bobby B. Fairfax School to get information about adapting our bathroom to accomodate Elisabeth's growing needs. Later on one of the OT's sent home with Elisabeth a DVD about universal design ideas for our home. (For more information visit: http://hec.osu.edu/ud/ ) It's the first major step we've taken to actually change our homecare to benefit Elisabeth and the rest of the family.
Another program I learned about through MRDD was the "waiver" program offered through the County Board of MRDD or the County Job and Family Services. The waiver is a way that Medicaid can pay for services to keep your child at home instead of a long-term facility or nursing home. (For more information, visit http://mrdd.ohio.gov/ )
Having a child like Elisabeth comes with so many more responsibilities than with a typical developing child. As her parents and caretakers, my husband and I take full responsibilities financially, emotionally, and physically meeting all her needs. Never once have we ever thought about long-term care for her because we thought we could manage her needs. Never once have we thought about Medicaid.
As Elisabeth is approaching her 15th birthday, my husband are experiencing the limits of caring for her. She is becoming harder to manage carrying her or walking her through the house. Even a lightweight at 60 pounds she requires the help of a strong adult to assist her in every aspect of living.
Emotionally, she is going through changes most kids go through her age, but it's more wearing on me because while I'm trying to comfort her, I can't figure out half the time what's wrong or why she's in distress. Sometimes, she can be up until 2 or 3 a.m. in discomfort or pain or who knows what.
I know parenting is "exhausting" in general. But I'm not talking about "exhausting" as in the hectic lifestyles we lead naturally carpooling here and there, dealing with last minute changes in scheduling, or other surprises we find ourselves in.
I'm talking about real physical, emotional, and financially draining lifestyles of caring for a child with special needs 24/7. The wheelchairs in and out of the car. The transferring. The rocking. The lifting. The dressing. The bathing. The drying off. The waiting. The feeding. The carrying here and there. The lifting and pulling and pushing. Going to Walgreens to get a prescription filled dragging your kids & the wheelchair in and out of car for the 50 millionth time in and out of the store, and back home.
It's amazing we haven't all left for crazyville.
Even though Elisabeths' IEP is geared at developing skill and ability working toward independence, she'll always have to rely on somebody else to do everday, occupational things. Children like Elisabeth are exhausting because they need physical assistance for every aspect of their life from getting out of bed to the school bus to the school and back home again.
It can be financially draining on many families, too, because most of the stuff we need for simple, basic living is very expensive. Prices for adapted dinnerware, seating, beds, bathrooms, showers, bicycles, walkers, wheelchairs, braces, and basic age-appropriate toys are in the thousands. A simple wheelchair converted manual ramped van is the price of a Mercedes Benz. A simple battery operated communication device, again, in the thousands. Adaptions to the home is an ongoing, ever changing challenge, that requires special products that are outrageously prices. A special adapted toilet paper roll for $80.00?
That's why we need to keep MRDD programs, schools, and outreach in our community. We need to keep it fully functional and not let it go like I'm seeing with Job and Family Services. (I just heard about big layoffs there and it scares me that nobody in government sees any value of having outreach coordinators or interventionists or case workers helping families in need.)
We need to keep MRDD services, schools, and programs functioning because there's nothing out there for parents and caretakers to help educate us about the expectations of parenting a child with special needs.
And they understand the challenges we face every day. They can point out the horizon line for us when everything looks a little fuzzy...
Homework Assignment: IEP (Individual Education Plans) in Ohio
"We have to be careful we're not creating special education systems or IEPs by proxy. What I mean is that we're not creating a system of people who are standing in for the professionals."
How different will IEP's look in Ohio now that the changes from the 2006 legislative amendments are trickling down? Click on the title above and you'll be transported into another universe. I promise you. (Like me, you'll never come back!)
Remember parents, an IEP is not just a bunch of papers we sign off every few years to gauge our child's progress and special education for our child is not babysitting time. IEPs are the master plan outlining what your child is working toward according to their own ability. IEPs are the road map for your child's future.
It's unfortunate we have created so much paperwork in developing IEPs because it can take away from time that would be spent with your child. So make sure that somewhere in the design of the IEP is how a student's time will be accounted for while they are at school. More specifically, who will be implementing the IEP with your child on a daily basis. The IEP should identify the players working directly with your child the majority of the time and what they'll be doing on a daily basis.
We also have to be careful we're not creating a special education system or IEPs by proxy. What I mean is that we're not creating a system of people who are standing in for the professionals. What if for example, suddenly we had schools where only one teacher was required to teach other people how to teach in the classroom.
Make sure you know who is with your child most of the time, too. I've been reading a lot about students being found in restraints or left in isolation, for example. The reason why this happens is because children are left in environments where the majority of their time is spent with a well-meaning person who is not trained to be with them.
In some cases, an untrained or inexperienced person who is not familiar with your child's behaviors or needs can actually cause them to become agitated or aggressive. Many times they can enable or trigger behaviors that hinder progress.
It is so important you know the people with whom your child is spending the majority of his or her time. Is there a licensed special education teacher on the premises all the time? Are there licensed speech therapists? Are there licensed OTs/PTs or is one available to them to make the necessary adaptions/changes if needed? If there is a behavior issue, is there a behaviorist or psychologist ready to respond if needed?
The IEP should also identify how the IEP is being implemented. If the environment where all this is suppose to take place doesn't look right, if it looks too crowded or if there is sensory overload or not enough adults on hand, then that needs to be addressed in the IEP meeting. If you're not sure, ask the special education teacher his or her professional opinion about adaptions in the classroom that can be made for your child to help not hinder progress.
Most importantly, make sure you understand your child's medical diagnosis upside down and backward and the challenges it presents for your child. Are there limitations? What is the neurological situation? What is the potential range for your child's ability? What makes your child tick?
Forget about what the other kids are doing unless you think you see a child that matches in ability, current skill level, or developmental patterns. But be careful here, too, because what works for one child may be disastrous for another.
Think this through. IEPs were created for your child, not for what other children are doing. Look at what your child can do and start from there. The "I" still stands for "individual, " the "E" still stands for "education" and the "P" still stands for "plan" regardless of what changes we read.
Get to know the district psychologist and their theories, methodologies, and instruments they use mapping the personalized development chart identifying your child strengths and special abilities. Determine if this clearly describes what your child is capable of in the classroom. If not, find out if there an alternative that will reflect best what your child is capable according to their own ability.
Get to know your district representatives. If you decide the classroom is not beneficial to his or her learning style or pattern of development or behaviors, then talk about creating an environment that will help your child grow in their area of need and ability.
Make sure you have on board during your IEP meetings a board licensed special education teacher who will be working directly with your child making the special adaptions and changes in the classroom because very few teachers have the resources or the time to do this for your child. Most importantly, make sure there are present in the IEP meeting an OT/PT/Speech/Behaviorist/Vision Specialists/Interventionist Advocate and anyone else who can aid in creating a special education plan for your child according to his or her own ability.
They say parents are the best advocates, but I have learned early in the journey, it helps to get to know the experts who keep current with research & studies about your child's special diagnosis. Sometimes they can help explain better what your child's needs are in the classroom. Or if the classroom is not the place for your child, an environment that will allow your child to benefit from a special education based on their emerging skills and special abilities.
How different will IEP's look in Ohio now that the changes from the 2006 legislative amendments are trickling down? Click on the title above and you'll be transported into another universe. I promise you. (Like me, you'll never come back!)
Remember parents, an IEP is not just a bunch of papers we sign off every few years to gauge our child's progress and special education for our child is not babysitting time. IEPs are the master plan outlining what your child is working toward according to their own ability. IEPs are the road map for your child's future.
It's unfortunate we have created so much paperwork in developing IEPs because it can take away from time that would be spent with your child. So make sure that somewhere in the design of the IEP is how a student's time will be accounted for while they are at school. More specifically, who will be implementing the IEP with your child on a daily basis. The IEP should identify the players working directly with your child the majority of the time and what they'll be doing on a daily basis.
We also have to be careful we're not creating a special education system or IEPs by proxy. What I mean is that we're not creating a system of people who are standing in for the professionals. What if for example, suddenly we had schools where only one teacher was required to teach other people how to teach in the classroom.
Make sure you know who is with your child most of the time, too. I've been reading a lot about students being found in restraints or left in isolation, for example. The reason why this happens is because children are left in environments where the majority of their time is spent with a well-meaning person who is not trained to be with them.
In some cases, an untrained or inexperienced person who is not familiar with your child's behaviors or needs can actually cause them to become agitated or aggressive. Many times they can enable or trigger behaviors that hinder progress.
It is so important you know the people with whom your child is spending the majority of his or her time. Is there a licensed special education teacher on the premises all the time? Are there licensed speech therapists? Are there licensed OTs/PTs or is one available to them to make the necessary adaptions/changes if needed? If there is a behavior issue, is there a behaviorist or psychologist ready to respond if needed?
The IEP should also identify how the IEP is being implemented. If the environment where all this is suppose to take place doesn't look right, if it looks too crowded or if there is sensory overload or not enough adults on hand, then that needs to be addressed in the IEP meeting. If you're not sure, ask the special education teacher his or her professional opinion about adaptions in the classroom that can be made for your child to help not hinder progress.
Most importantly, make sure you understand your child's medical diagnosis upside down and backward and the challenges it presents for your child. Are there limitations? What is the neurological situation? What is the potential range for your child's ability? What makes your child tick?
Forget about what the other kids are doing unless you think you see a child that matches in ability, current skill level, or developmental patterns. But be careful here, too, because what works for one child may be disastrous for another.
Think this through. IEPs were created for your child, not for what other children are doing. Look at what your child can do and start from there. The "I" still stands for "individual, " the "E" still stands for "education" and the "P" still stands for "plan" regardless of what changes we read.
Get to know the district psychologist and their theories, methodologies, and instruments they use mapping the personalized development chart identifying your child strengths and special abilities. Determine if this clearly describes what your child is capable of in the classroom. If not, find out if there an alternative that will reflect best what your child is capable according to their own ability.
Get to know your district representatives. If you decide the classroom is not beneficial to his or her learning style or pattern of development or behaviors, then talk about creating an environment that will help your child grow in their area of need and ability.
Make sure you have on board during your IEP meetings a board licensed special education teacher who will be working directly with your child making the special adaptions and changes in the classroom because very few teachers have the resources or the time to do this for your child. Most importantly, make sure there are present in the IEP meeting an OT/PT/Speech/Behaviorist/Vision Specialists/Interventionist Advocate and anyone else who can aid in creating a special education plan for your child according to his or her own ability.
They say parents are the best advocates, but I have learned early in the journey, it helps to get to know the experts who keep current with research & studies about your child's special diagnosis. Sometimes they can help explain better what your child's needs are in the classroom. Or if the classroom is not the place for your child, an environment that will allow your child to benefit from a special education based on their emerging skills and special abilities.
May Flowers ...
I don't know what happened to the first part of May. I recall carrying 50 bags of mulch down a hill and 50 more here and there, but as I look out my window I am almost immobilized by the work I know that's out there this time of year.
I've had my vegetable garden in since late April and the perennial beds look good. I just haven't gotten around to throwing out the flower seed for my annual display of zinneas & cosmos because the beds are not ready.
Eric's death still is very surreal to me. Seeing him wasn't an everyday thing like it was for his family and friends. It was the special occasions to visit the big family that made our trips up to Cleveland seem like a family vacation and Eric was part of the experience. He was part of that anticipation.
We did manage to attend the Mother's Day Indian's game in Cleveland with the big family a weekend after the funeral. Everyone was there. Except Eric. We got through it. We managed. I guess we were grateful to be together even though our hearts are still breaking over his death.
Elisabeth's prom at McAuley was fun. It helped get my mind off Eric until I heard a parent talking about his 20 year old son at college. It seems like every person I've met since Eric died has a 20 year old son in college.
So naturally, when I start hearing these stories, I think about my brother and his family and wonder how they are coping for that minute. Are they finding light at the end of that grief tunnel?
I wonder if the person with whom I am talking ever thought that their son would die from injuries after falling 4 floors?
I am learning how to pray. I am learning how to connect again.
I have a few other things on my mind, too. I want to get a conversion mini-van to transport Elisabeth and her chair without having to rely on lifting her or her chair into the car. I am counting the days until I can leave the house without ever lifting her wheelchair in the car.
One - two - three. It could be weeks or months.
The vans are expensive. It's well over $40,000 for a decent one but I'm told not to worry by a soft spoken well-meaning sale person because I can pay it back over ten years. I hear that it's a special deal they have for people who need wheelchair accessible vans. I don't get it. Am I suppose to feel relieved by paying 9% in interest over ten years?
Tomorrow, I'm going in for tests that every 51 year old woman goes through when she's told she has an enlarged ovary and is overdue for a mammogram. I google "enlarged ovary" every now and then to check in and decide its a coin toss. Just like falling out a window.
Last week, I spent time searching for pictures of Eric that do not remind me of his death. Pictures that remind me of a time when I was motivated to throw my flower seeds in flower beds that I prepared each year. A time in my life when I wasn't worried about mammograms, ultrasounds, or putting a wheelchair in car.
I've had my vegetable garden in since late April and the perennial beds look good. I just haven't gotten around to throwing out the flower seed for my annual display of zinneas & cosmos because the beds are not ready.
Eric's death still is very surreal to me. Seeing him wasn't an everyday thing like it was for his family and friends. It was the special occasions to visit the big family that made our trips up to Cleveland seem like a family vacation and Eric was part of the experience. He was part of that anticipation.
We did manage to attend the Mother's Day Indian's game in Cleveland with the big family a weekend after the funeral. Everyone was there. Except Eric. We got through it. We managed. I guess we were grateful to be together even though our hearts are still breaking over his death.
Elisabeth's prom at McAuley was fun. It helped get my mind off Eric until I heard a parent talking about his 20 year old son at college. It seems like every person I've met since Eric died has a 20 year old son in college.
So naturally, when I start hearing these stories, I think about my brother and his family and wonder how they are coping for that minute. Are they finding light at the end of that grief tunnel?
I wonder if the person with whom I am talking ever thought that their son would die from injuries after falling 4 floors?
I am learning how to pray. I am learning how to connect again.
I have a few other things on my mind, too. I want to get a conversion mini-van to transport Elisabeth and her chair without having to rely on lifting her or her chair into the car. I am counting the days until I can leave the house without ever lifting her wheelchair in the car.
One - two - three. It could be weeks or months.
The vans are expensive. It's well over $40,000 for a decent one but I'm told not to worry by a soft spoken well-meaning sale person because I can pay it back over ten years. I hear that it's a special deal they have for people who need wheelchair accessible vans. I don't get it. Am I suppose to feel relieved by paying 9% in interest over ten years?
Tomorrow, I'm going in for tests that every 51 year old woman goes through when she's told she has an enlarged ovary and is overdue for a mammogram. I google "enlarged ovary" every now and then to check in and decide its a coin toss. Just like falling out a window.
Last week, I spent time searching for pictures of Eric that do not remind me of his death. Pictures that remind me of a time when I was motivated to throw my flower seeds in flower beds that I prepared each year. A time in my life when I wasn't worried about mammograms, ultrasounds, or putting a wheelchair in car.
The Boy Who Lived ... Eric Hansen
I am wrestling with labels again.
I'm wrestling with a "label" because of what I read in the newspaper and in blogs about my nephew, Eric Scott Hansen, the youngest brother of Brian and Andrew.
Eric was so much more than the 20 year old engineering student at Ohio University who died from injuries he sustained falling 4 floors. He was so much more than the consequences in the body I found his mother, father, brothers, grandparents, aunts and uncles & cousin grieving over in the hospital room last week.
His connection to life pulsated with love and energy and was held together by the strong bonds that were established by the faith-inspired family that created him.
Eric was the sum total of each and every life he touched beginning with his brothers and parents. For Elisabeth, he created that unique bond of familiarity, following in Andrew and Brian's footsteps, so he could be a part of her life, too. He made her laugh when he came into her space. He made her smile.
To his grandparents, aunts, uncles, and everyone else in the family, he was the personification of joy. Pure joy. To his coaches, scout leaders, teachers, and employers, he was brilliant, curious, charismatic, strong, and athletic. For his friends, he added light, comedy, and action.
Overnight, he tragically became the young college student who reminded every parent about getting that call from the police station or campus security. For families and friends, he made this reality unbearable.
Overnight, he became the Eric whose mother, father, and brothers reached out lovingly, comforting and consoling every family and friend waiting in line for hours to express their grief, shock, disbelief, and sorrow.
Overnight, he became the Eric eulogized by a very brave priest recalling the enthusiasm we see in every young life, the infectious personality he radiated, and the playful sarcasm that everyone remembers.
Overnight, he became the disclaimer label -- life is "fragile." A reminder for everyone in a wake of tragedy that our actions are consequential. Individually or collectively, good or bad, intentionally or unintentionally, our actions can sustain, save, or erase life in a matter of seconds.
I know, too, there are labels for the endless journey of grief and sorrow we experience when someone so young, so dear, and so precious in our life passes because we also use labels to connect to each other as a humanity. We use labels to heal people.
But I'm not ready to put a label on him or his life or his death or his family. Instead I will be searching for that "candy- coated popcorn, peanuts and prize" label found on every box of Cracker Jacks. It's the only label that has any real meaning for me.
In loving memory of Eric Scott Hansen
I'm wrestling with a "label" because of what I read in the newspaper and in blogs about my nephew, Eric Scott Hansen, the youngest brother of Brian and Andrew.
Eric was so much more than the 20 year old engineering student at Ohio University who died from injuries he sustained falling 4 floors. He was so much more than the consequences in the body I found his mother, father, brothers, grandparents, aunts and uncles & cousin grieving over in the hospital room last week.
His connection to life pulsated with love and energy and was held together by the strong bonds that were established by the faith-inspired family that created him.
Eric was the sum total of each and every life he touched beginning with his brothers and parents. For Elisabeth, he created that unique bond of familiarity, following in Andrew and Brian's footsteps, so he could be a part of her life, too. He made her laugh when he came into her space. He made her smile.
To his grandparents, aunts, uncles, and everyone else in the family, he was the personification of joy. Pure joy. To his coaches, scout leaders, teachers, and employers, he was brilliant, curious, charismatic, strong, and athletic. For his friends, he added light, comedy, and action.
Overnight, he tragically became the young college student who reminded every parent about getting that call from the police station or campus security. For families and friends, he made this reality unbearable.
Overnight, he became the Eric whose mother, father, and brothers reached out lovingly, comforting and consoling every family and friend waiting in line for hours to express their grief, shock, disbelief, and sorrow.
Overnight, he became the Eric eulogized by a very brave priest recalling the enthusiasm we see in every young life, the infectious personality he radiated, and the playful sarcasm that everyone remembers.
Overnight, he became the disclaimer label -- life is "fragile." A reminder for everyone in a wake of tragedy that our actions are consequential. Individually or collectively, good or bad, intentionally or unintentionally, our actions can sustain, save, or erase life in a matter of seconds.
I know, too, there are labels for the endless journey of grief and sorrow we experience when someone so young, so dear, and so precious in our life passes because we also use labels to connect to each other as a humanity. We use labels to heal people.
But I'm not ready to put a label on him or his life or his death or his family. Instead I will be searching for that "candy- coated popcorn, peanuts and prize" label found on every box of Cracker Jacks. It's the only label that has any real meaning for me.
In loving memory of Eric Scott Hansen
In Memory of Eric Scott Hansen
For Andrew, Brian, and Eric's loving family...
We use labels everyday in our life. Labels for acquiring knowledge and meeting challenges like a teacher in the classroom and a city planner looking for green space to create beauty and recreation. Parents use labels charting their child's physical, intellectual and social development to meet their needs here on Earth.
Hopefully, historians are truthful and honest labeling our human history because learning from our past helps us prepare for our future. We become better people. We solidify our connection to each other as a humanity while also healing. Just ask anyone labeled "genocide" survivor.
Right now, I'm wrestling with the one label describing the wake of our human condition. The one used to eulogize our beloved Eric.
Life is "fragile."
We use labels everyday in our life. Labels for acquiring knowledge and meeting challenges like a teacher in the classroom and a city planner looking for green space to create beauty and recreation. Parents use labels charting their child's physical, intellectual and social development to meet their needs here on Earth.
Hopefully, historians are truthful and honest labeling our human history because learning from our past helps us prepare for our future. We become better people. We solidify our connection to each other as a humanity while also healing. Just ask anyone labeled "genocide" survivor.
Right now, I'm wrestling with the one label describing the wake of our human condition. The one used to eulogize our beloved Eric.
Life is "fragile."
In Memory of Eric Scott Hansen
Move the article here:
http://elisabethssmom.blogspot.com/2009/05/in-memory-of-eric-scott-hansen.html
http://elisabethssmom.blogspot.com/2009/05/in-memory-of-eric-scott-hansen.html
Special Olympic Prom Party
Come join McAuley girls for
A Night of Games, Crafts, and Dancing
May 15th
6:30 to 8:30 p.m.
Dress up in Prom attire or something fun and dressy!
Open to Special Olympic Participants 13 years old and under
Every child will have a McCauley partner!s
RSVP by May 11th to Special Olympics 271-2606
Parents may drop off children or stay to watch the fun!
A Night of Games, Crafts, and Dancing
May 15th
6:30 to 8:30 p.m.
Dress up in Prom attire or something fun and dressy!
Open to Special Olympic Participants 13 years old and under
Every child will have a McCauley partner!s
RSVP by May 11th to Special Olympics 271-2606
Parents may drop off children or stay to watch the fun!
Learning to Live on Less
When Life Throws A Curve Ball: Learn to Live on Less Program
with participating agencies Catholic Charities, Consumer Credit Counseling Service, and Nutrition Council
When: May 22, 2009 8:30 am until 12:15 pm
Where: Corpus Christi Church Undercroft 2012 Springdale Road
RSVP to Sandy Keier at (513) 241-7745 before May 15, 2009
with participating agencies Catholic Charities, Consumer Credit Counseling Service, and Nutrition Council
When: May 22, 2009 8:30 am until 12:15 pm
Where: Corpus Christi Church Undercroft 2012 Springdale Road
RSVP to Sandy Keier at (513) 241-7745 before May 15, 2009
Community Resource Information Fair
Join the Center for Infants and Children iwth Special Needs and the Special Needs Resource Dirctory for this free opportunity to meet with professionals, community agencies and companies specializing in:
Medical Support
Community Programs and Services
Recreation
Home Health
Financial Planning
Plus More!!!
June 1, 2009
10 am until 3 pm
Cincinnati Children's Fifth Third Bank Auditorium
(across from cafeteria)
Medical Support
Community Programs and Services
Recreation
Home Health
Financial Planning
Plus More!!!
June 1, 2009
10 am until 3 pm
Cincinnati Children's Fifth Third Bank Auditorium
(across from cafeteria)
Transistion to High School and Beyond ...
Parents are invited to attend "Transistioning to High School and Beyond: Options, Services, and Supports" brought to you by Northwest School District in Partnership with Mt. Healthy Local Schools, Center for Regional Education Services/Hamilton County and Education Service Center.
When? April 2, 2009 from 5:00 to 8:00 p.m.
Who? Students with special needs grades 8-12 (Teachers, Counselors, and others seeking transition information)
Where? Northwest Education Resource Center 331o Compton Road, Cincinnati, OH 45251
For additional information, please contact Reena Fish at 513-205-8725 or Deborah Stroud at 513-922-2300
When? April 2, 2009 from 5:00 to 8:00 p.m.
Who? Students with special needs grades 8-12 (Teachers, Counselors, and others seeking transition information)
Where? Northwest Education Resource Center 331o Compton Road, Cincinnati, OH 45251
For additional information, please contact Reena Fish at 513-205-8725 or Deborah Stroud at 513-922-2300
18 or Older with a Disability Label?
Do you have a physical or mental condition that prevents you from working and earning a living?
At age 18, Social Security no lnger counts parents' income and resources when determining eligibility for Supplemental Security Income (SSI). If approved, you can receive up to $632/monthly in SSI and qualify for Medicaid, comprehensive health coverage.
To learn more about how you might qualify, Sue Denny, Social Security Administrator, will be holding workshop at Oak Hills High School at 3200 Ebenezer Road, Cincinnati Media Center.
This workshop is designed for parent who have a son or daughter 18-22 years old as of May 2009. During this session, you and your son or daughter will begin the SSI application process with SS representatives.
Seating is limited and advance reservations is strongly recommended by April 24, 2009. To register, contact Sue Denny at susan.denny@ssa.gov or (513) 357-5507
If you have general questions, contact Deborah Stroud, Work Study Coordinator at Oak Hills Schools at stroud_d@oakhills.hccanet.org or 513-922-2300.
At age 18, Social Security no lnger counts parents' income and resources when determining eligibility for Supplemental Security Income (SSI). If approved, you can receive up to $632/monthly in SSI and qualify for Medicaid, comprehensive health coverage.
To learn more about how you might qualify, Sue Denny, Social Security Administrator, will be holding workshop at Oak Hills High School at 3200 Ebenezer Road, Cincinnati Media Center.
This workshop is designed for parent who have a son or daughter 18-22 years old as of May 2009. During this session, you and your son or daughter will begin the SSI application process with SS representatives.
Seating is limited and advance reservations is strongly recommended by April 24, 2009. To register, contact Sue Denny at susan.denny@ssa.gov or (513) 357-5507
If you have general questions, contact Deborah Stroud, Work Study Coordinator at Oak Hills Schools at stroud_d@oakhills.hccanet.org or 513-922-2300.
Elisabeth's Science Project
A few days ago, I attended my daughter's science exhibit focusing on the human body made by her classmates at Bobby B. Fairfax. Except for the written descriptions on the wall, it was no ordinary science exhibit. The focus for her wasn't entirely about becoming more familiar with the function of each body part on exhibit there. The focus was to allow her to explore in an environment that challenged her individual area of skill and ability.
Elisabeth's contribution was explaining the "tongue." Instead of explaining the "tongue" through her usual fixation of self-stimming, her teacher gave her visual cues to explain the tongue using her techtalk. She also make a model of the tongue that was small enough to place in her hand for sensory input, but large enough so it wouldn't end up in her mouth.
Elisabeth was engaged in a purposeful and meaningful environment that was challenging for her. At the "hand" exhibit, she was reaching out to objects that that would buzz, clang, or crash on touch. At the lung exhibit, she was provided appropriate sensory stimulation holding baggies made to look like lungs that inflated and deflated on touch making a crinkly sound. I think her favorite was the "nose" exhibit station where her fellow student pressed a button to make a "sneeze" from a spray bottle.
What I learned from the students who put on the Science Exhibit at the school, is that when we create opportunities for children to learn according to their personal area of development, skill level, and ability, they will succeed.
Elisabeths' New Do
I really great stylist, Rachel Hayden, from Milford's Salon VIP did a beautiful job, don't you think?
The Mona Lisa Syndrome
for Stephanie Ramos and Danieal Kelly
How many times have we heard from complete strangers or a child, "What's wrong with her?" How about the "what's her diagnosis?" Sometimes there are stares and pointing fingers belonging to a very curious or concerned child who is afterward guided by an adult saying in a hushed tone, "she's different" or "don't stare, that's rude." In one situation, a lady gave me holy water she got from the Lourdes Grotto, to put in her drink to "heal her."
Heal her?
Oh. I believe in miracles. Don't get me wrong. Survival is miracle.
We know people have good intentions and some are just naturally curious because they have a family or friend who "looks" just like our child. Sometimes we hear from these strangers that they know someone who even "acts" like our child, too.
Sometimes they ask about her syndrome. In most cases, it's really the only time people acknowledge our child presence even though they are not talking directly to our child. They are talking "about" our child as though our child is not really there.
There's a part of me that wants to answer back, "What!!!??? There's something wrong with my child? Stop the presses everyone" but sarcasm would be counter-productive and the goal is to get her to fit in with everyone else.
She is absolutely adorable. And what do we do when we see the most adorable child in the world? Don't we usually acknowledge their presence by smiling or saying "oh, how adorable."
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!
Life is too short to talk about diagnosis or therapy. Let's talk about the 45 minutes it took putting nail polish on her nails so they match her top. Let's talk about hair and the 1 hour it took to fix her hair so it looks just like that actress from Jane Austen's Book Club. How about the 20 minutes it took to get her shoes on. The shoes that I got to match her nail polish that match her top.
When I run into anyone curious, I tell them what her name is and hope they'll come up and say, "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 who we hardly know, comes up to our daughter, gets down on his knees to make eye contact with her and 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.
How many times have we heard from complete strangers or a child, "What's wrong with her?" How about the "what's her diagnosis?" Sometimes there are stares and pointing fingers belonging to a very curious or concerned child who is afterward guided by an adult saying in a hushed tone, "she's different" or "don't stare, that's rude." In one situation, a lady gave me holy water she got from the Lourdes Grotto, to put in her drink to "heal her."
Heal her?
Oh. I believe in miracles. Don't get me wrong. Survival is miracle.
We know people have good intentions and some are just naturally curious because they have a family or friend who "looks" just like our child. Sometimes we hear from these strangers that they know someone who even "acts" like our child, too.
Sometimes they ask about her syndrome. In most cases, it's really the only time people acknowledge our child presence even though they are not talking directly to our child. They are talking "about" our child as though our child is not really there.
There's a part of me that wants to answer back, "What!!!??? There's something wrong with my child? Stop the presses everyone" but sarcasm would be counter-productive and the goal is to get her to fit in with everyone else.
She is absolutely adorable. And what do we do when we see the most adorable child in the world? Don't we usually acknowledge their presence by smiling or saying "oh, how adorable."
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!
Life is too short to talk about diagnosis or therapy. Let's talk about the 45 minutes it took putting nail polish on her nails so they match her top. Let's talk about hair and the 1 hour it took to fix her hair so it looks just like that actress from Jane Austen's Book Club. How about the 20 minutes it took to get her shoes on. The shoes that I got to match her nail polish that match her top.
When I run into anyone curious, I tell them what her name is and hope they'll come up and say, "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 who we hardly know, comes up to our daughter, gets down on his knees to make eye contact with her and 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.
Potty Training Children With Disability Labels
I have an article right here for information about potty training.
If you're interested in my story, here it is:
The key to successful potty training, I remembered from training her siblings, was matching "readiness" with the times she was relaxed. It was difficult for us to gauge this for Elisabeth due to her spasticity, poor trunk control, and communication delays.
What triggered our need for potty training this year was seeing no end to the reality of using pediatrician prescribed stool softeners and enemas to help her pass her waste. Somehow there had to be a better way for her rather than on relying on diapers as my only option. And if I didn't keep trying, I might miss that window of opportunity for her.
As parents with children who have disability labels, we find that part of our responsibility raising children is overlooking one thing to make allowances for something else. And it changes every day. After realizing I was expending more energy "cleaning her up" as she got older, I figure maybe it would be easier to put her on an adapted chair and let nature do the rest. She already spent a good deal of time keeping herself busy with her "self-stims" so why not put her on safe adapted potty chair while we're cooking dinner or making lunch and just see what happens.
So I set out to create my own list of "why" and "why not" my child was ready to be potty trained. Each time I saw a greater opportunity for trying vs. doing nothing at all.
First, I considered if we were all up to this because it required a lot of time, relaxation, trunk support, patience, and physical transfers on and off the adapted chair which can be very stressful on one's back.
Second, I knew it was going to take time so I created a block of time allowing as much as one half hour for each sitting for the morning, mid morning, after lunch, 3 p.m., before dinner, after dinner, and before bed-time. I realized this was going to be challenging but eventually, down the road, I was able to cut back to only 3-4 times a day.
I always started the training during the summer each time so it didn't interfere with her school schedule. I also started an extra hour early in the morning positioning her in her chair for that first stream waiting on hand with a yogurt or banana to reward her. Sometimes I was too late and sometimes not. When she succeeded, I gave her the "good job Elisabeth!" and hugs. When I knew we had missed the opportunity, I assured her that we would try again.
And third, I allowed time for failure because for the first trial runs in her life, I gave up thinking she wasn't ready. I gave up because I thought she didn't have the readiness or trunk control or physical ability to make this happen.
It wasn't until this summer shortly after her 14th birthday that I started seeing results. The first few times, her sitting time was extended in some cases to 45 minutes to an hour, but each time something little happened. On time, we waited for almost an hour and half. And right when I was about to take her off, the phone rang. So I left to answer the phone and when I returned, she had her very first success story.
Six months later she is staying dry most of the day with few exceptions. As long as I continue to give her opportunities to use the potty, she stays dry. As long as I am consistent in providing opportunities for her to sit and relax, she is always successful.
We also created a new early morning ritual using the chair to dress her sitting up which is a lot easier than lying down. So while she is sitting, I comb her hair, brush her teeth, and I use the time for putting her AFOs on, her pants as far as it will go while she's sitting, and next her shoes. Before you know it, out it comes, and she's ready for breakfast afterward.
The challenge is when we go out because we can't take the potty chair with us. I usually have to allow for abnormal times to be in restroom with her which often times cuts into the entire purpose of going somewhere. When we go on vacation, for example, I allow for time to spend with her. Hopefully there is always a clean restroom available for us to maneuver around.
Our last few trips, she stayed dry the entire time.
I can't guarantee anything because each child is so different. In hindsight, I can only offer my experience as a suggestion keeping in mind that the actual process of potty training is pretty much the same for typical developing children as it is for children who have who have low tone, spasticity, and who are experiencing delays in communication ability and simple motor skills.
Potty training requires our patience and their readiness. The only difference, of course, is that it's a little harder to read the signs with our children. And it requires special adaptations in the bathroom to meet their special needs.
My Daddy & I Went To A Dance!!!!
Springfield Township hosted the first annual Father and Daughter Dance following in the footsteps of a "Father and Daughter Dance" that's been part of Finneytown's tradition for many years... Here are a few photos of Elisabeth and her Dad!
Hurricane Katrina Long Term Recovery Research
Researchers at the Center for Disability and Development at Texas A&M
University are conducting a study on the long-term recovery survivors from
Hurricane Katrina who have diabetes or a disability. If selected,
individuals will participate in either an interview, telephone survey, or a
focus group and be eligible for up to $50.00 in compensation. Interested
individuals or their guardians (if applicable) should contact the Texas A&M
project using their toll free number at 1-866-578-4366. All calls will be
confidential and consent procedures will be carefully followed with all
potential participants.
We are conducting a study on the long term recovery of survivors from
Hurricane Katrina. We would like to ask your assistance in disseminating our
project information below to groups and individuals who might be interested
in participating. A flyer is also attached in the case you would like to
post this information.
Please contact Christy Knight, Data Coordinator, at
Texas A&M University at cnknight@ag.tamu.edu if you have further questions
or suggestions for other groups who we might be interested in disseminating
information about this study.
************************************************************************
Principal Investigator: Laura M. Stough, PhD
Department of Educational Psychology
University are conducting a study on the long-term recovery survivors from
Hurricane Katrina who have diabetes or a disability. If selected,
individuals will participate in either an interview, telephone survey, or a
focus group and be eligible for up to $50.00 in compensation. Interested
individuals or their guardians (if applicable) should contact the Texas A&M
project using their toll free number at 1-866-578-4366. All calls will be
confidential and consent procedures will be carefully followed with all
potential participants.
We are conducting a study on the long term recovery of survivors from
Hurricane Katrina. We would like to ask your assistance in disseminating our
project information below to groups and individuals who might be interested
in participating. A flyer is also attached in the case you would like to
post this information.
Please contact Christy Knight, Data Coordinator, at
Texas A&M University at cnknight@ag.tamu.edu if you have further questions
or suggestions for other groups who we might be interested in disseminating
information about this study.
************************************************************************
Principal Investigator: Laura M. Stough, PhD
Department of Educational Psychology
Erma Bomback's Vanity Clause
(Note to readers: if you click on the title, you'll be directed to the article to which I am referring here.)
A while back, Elisabeth and I met a woman in a line at the bank. She was behind me crying very softly. I turned around and asked if I could help her. She unloaded the news of her newly born - mentally retarded granddaughter, her taking-it-hard daughter, and her falling apart family. The woman went on with "it's got to be so hard on you" and pointing to Elisabeth "the poor little dear." As she blew her nose in a tissue she said, "what kind of life is it with all problems she's going to have?"
I wasn't sure if she was speaking rhetorically but either way I couldn't answer. All I could offer her was empathy assuring her that Elisabeth was fine but caught myself like everyone does ending with a sympathetic "I'm sorry to hear about your granddaughter" instead of an opening "what is her name?"
She broke down even more. After I pointed at the empty chairs in the corner of the bank lobby offering to sit with her until she gained composure, I searched through Elisabeth's backpack on her wheelchair for candy or a bottle of water. Instead, I found a newspaper clipping that I had tucked away a few years before. A newspaper clipping I almost threw away.
It was a clipping from an article written by Erma Bombeck that finds its way into every hand of every family of a child with special needs whether they like it or not. I hesitated offering it to the new grandmother because I remember at first taking offense from what was written. But I needed to give her something tangible. I needed to make a connection to let her know things turn out okay.
After I assured her that Elisabeth is a very happy little girl, I asked if she ever read Erma Bombeck's articles. I showed her the clipping and explained how it was given to me shortly after Elisabeth's birth by a mother who had an adult son with CP. I handed the article to the crying grandmother who stopped crying long enough to look for her reading glasses but I stopped her and said, "no, wait until you get home."
Then I took Elisabeth out of her wheelchair and said "Elisabeth loves hugs from Grandmas and being that her Grandma lives far away, can she give you hug?" While this woman was holding Elisabeth's limp, curled 6 year old body, I shared with this woman what helped me understand the responsibility I had being Elisabeth's mother.
Before I became pregnant with Elisabeth, I told her about the photograph of a child I saw in an exhibit memorializing Anne Frank and all the children who perished with her. It was a medical photograph documenting a child ready to be "exterminated" due to her imperfection.
When I saw this picture, I explained, it was like I knew this child all my life. "I cried just like you were crying because I wanted to give her the life she deserved instead of being discarded like an unwanted gift. The way they leave this world should not be determined because of the way they enter.
"Everyone goes through stages of acceptance differently," I explained, "I went through mine early and you're moving through your own right now. It's natural to get stuck using a lot of our own personal energy and emotional resources blaming ourselves or blaming others and looking for cures and making bargains with God. Just remember what your new granddaughter needs most is a grandmother all children deserve to have."
After giving Elisabeth a hug, the new grandmother asked what she could do for her daughter, "She's still taking it really bad."
"For each new mother," I explained, "the experience and acceptance is different. The best thing you can do is to be the mother she deserves to have. The Mother you were chosen to be. According to Erma Bombeck, I was chosen to be Elisabeth's Mom because I was self absorbed and vain and I wouldn't have time to wallow in self pity or pity for my child. Hopefully you can get your daughter off the hook here, for Erma's sake." And I laughed so hard it echoed through the bank lobby.
The woman looked at me very curious and started laughing, too. "I loved reading Erma Bombeck in the newspaper" she commented and then I suggested getting back in line because the bank would be closing soon.
While we stood in line, I told her about Elisabeth's Grandmother's church club that raised a thousand dollars so she could have her own adapted bicycle because "no child should be without a bicycle." I felt a new confidence growing in the new grandmother as she saw Elisabeth through a new set of eyes trying to get her to giggle again.
The same confidence that was passed onto me as tangible as the newspaper clipping I almost threw away.
A while back, Elisabeth and I met a woman in a line at the bank. She was behind me crying very softly. I turned around and asked if I could help her. She unloaded the news of her newly born - mentally retarded granddaughter, her taking-it-hard daughter, and her falling apart family. The woman went on with "it's got to be so hard on you" and pointing to Elisabeth "the poor little dear." As she blew her nose in a tissue she said, "what kind of life is it with all problems she's going to have?"
I wasn't sure if she was speaking rhetorically but either way I couldn't answer. All I could offer her was empathy assuring her that Elisabeth was fine but caught myself like everyone does ending with a sympathetic "I'm sorry to hear about your granddaughter" instead of an opening "what is her name?"
She broke down even more. After I pointed at the empty chairs in the corner of the bank lobby offering to sit with her until she gained composure, I searched through Elisabeth's backpack on her wheelchair for candy or a bottle of water. Instead, I found a newspaper clipping that I had tucked away a few years before. A newspaper clipping I almost threw away.
It was a clipping from an article written by Erma Bombeck that finds its way into every hand of every family of a child with special needs whether they like it or not. I hesitated offering it to the new grandmother because I remember at first taking offense from what was written. But I needed to give her something tangible. I needed to make a connection to let her know things turn out okay.
After I assured her that Elisabeth is a very happy little girl, I asked if she ever read Erma Bombeck's articles. I showed her the clipping and explained how it was given to me shortly after Elisabeth's birth by a mother who had an adult son with CP. I handed the article to the crying grandmother who stopped crying long enough to look for her reading glasses but I stopped her and said, "no, wait until you get home."
Then I took Elisabeth out of her wheelchair and said "Elisabeth loves hugs from Grandmas and being that her Grandma lives far away, can she give you hug?" While this woman was holding Elisabeth's limp, curled 6 year old body, I shared with this woman what helped me understand the responsibility I had being Elisabeth's mother.
Before I became pregnant with Elisabeth, I told her about the photograph of a child I saw in an exhibit memorializing Anne Frank and all the children who perished with her. It was a medical photograph documenting a child ready to be "exterminated" due to her imperfection.
When I saw this picture, I explained, it was like I knew this child all my life. "I cried just like you were crying because I wanted to give her the life she deserved instead of being discarded like an unwanted gift. The way they leave this world should not be determined because of the way they enter.
"Everyone goes through stages of acceptance differently," I explained, "I went through mine early and you're moving through your own right now. It's natural to get stuck using a lot of our own personal energy and emotional resources blaming ourselves or blaming others and looking for cures and making bargains with God. Just remember what your new granddaughter needs most is a grandmother all children deserve to have."
After giving Elisabeth a hug, the new grandmother asked what she could do for her daughter, "She's still taking it really bad."
"For each new mother," I explained, "the experience and acceptance is different. The best thing you can do is to be the mother she deserves to have. The Mother you were chosen to be. According to Erma Bombeck, I was chosen to be Elisabeth's Mom because I was self absorbed and vain and I wouldn't have time to wallow in self pity or pity for my child. Hopefully you can get your daughter off the hook here, for Erma's sake." And I laughed so hard it echoed through the bank lobby.
The woman looked at me very curious and started laughing, too. "I loved reading Erma Bombeck in the newspaper" she commented and then I suggested getting back in line because the bank would be closing soon.
While we stood in line, I told her about Elisabeth's Grandmother's church club that raised a thousand dollars so she could have her own adapted bicycle because "no child should be without a bicycle." I felt a new confidence growing in the new grandmother as she saw Elisabeth through a new set of eyes trying to get her to giggle again.
The same confidence that was passed onto me as tangible as the newspaper clipping I almost threw away.
Support Group: Parents of Children w/ Neurobiological Disorders
For parents, grandparents, caregivers and others who are concerned about a child experiencing SERIOUS EMOTIONAL Disorders or has been diagnosed with or exhibits symptoms of a neurobiological disorder or mental illness.
When? The first Saturday of each month 1-2:20 p.m.
Where? At Children's Hospital, College Hill Campus, 5642 Hamilton Avenue, Cincinnati 45224
Sponsored by NAMI Hamilton County, call the NAMI office 513-351-3500 for more info.
Facilitated by Carin Ives
NAMI of Hamilton Country is a partipating member of Community Shares of Greater Cincinnati
When? The first Saturday of each month 1-2:20 p.m.
Where? At Children's Hospital, College Hill Campus, 5642 Hamilton Avenue, Cincinnati 45224
Sponsored by NAMI Hamilton County, call the NAMI office 513-351-3500 for more info.
Facilitated by Carin Ives
NAMI of Hamilton Country is a partipating member of Community Shares of Greater Cincinnati
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