Monday, September 9, 2013
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
Wednesday, August 28, 2013
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!
Wednesday, June 19, 2013
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.
Saturday, May 4, 2013
Wednesday, May 1, 2013
Sparkle Effect Cheerleaders
"SPARKLE EFFECT" Cheer Program for Students with Disabilities
The Finneytown High School Cheerleaders proudly announce the start of a new inclusive cheer program that includes students with disabilities. Students with disabilities will have an opportunity to cheer for and with their peers at this years home football and basketball games.
This innovative student-run program encourages students nationwide to include students with disabilities at junior high, high school, and college level to cheer-male or female. The Sparkle Effect squad will play a part in enhancing social, communication, and physical skills in these students, as well as having a positive effect on the school and community. We want to make game night an experience for everyone !
Join us on MONDAY NIGHT, MAY 13TH, 7PM IN THE MP AT FINNEYTOWN SECONDARY CAMPUS
We will have an information night, meet the coaches and some of this years cheerleaders, and even have the opportunity to register for this years "Sparkle Effect" cheer squad.
For additional information, please visit the website-www.The
You can also contact Dianna Watson, FHS Cheer Coach at DWatson@finneyt
WHO'S READY TO SPARKLE?
Wednesday, February 27, 2013
Puberty Happens...
Our children generally hit puberty head on regardless of their functioning "age" capacity. We see the changes physically but we don't factor in that the hormones are buzzing the same as any typical developing biological peer.
We noticed changes in Elisabeth's behavior toward the opposite sex around twelve but we weren't thinking, "Oh, this is puberty" because she's generally happy-go-lucky. She just happens to be around a lot of males -- her uncles, cousins, and friends at school. In fact, there were so many other issues going on "puberty" took a back seat until she turned 18. When we started experiencing changes in her sleep habits, staying up later for example, then it all made sense.
In church, she would throw her chains behind her when she saw a cute college boy standing near her. She tips her head to cuddle if you get close to her. She loves to be held with your arms around her. She also loves when you hold her hand which is something she would not tolerate. It wasn't until I watched her "flirt" with one of the male volunteers at her school that I realized, "Uh oh, her emotional age is catching up with her biological age!"
And that's a good thing. Here's an article about some of options parents and caregivers have about suppression of menstrual cycle which isn't an issue for Elisabeth right now.
We noticed changes in Elisabeth's behavior toward the opposite sex around twelve but we weren't thinking, "Oh, this is puberty" because she's generally happy-go-lucky. She just happens to be around a lot of males -- her uncles, cousins, and friends at school. In fact, there were so many other issues going on "puberty" took a back seat until she turned 18. When we started experiencing changes in her sleep habits, staying up later for example, then it all made sense.
In church, she would throw her chains behind her when she saw a cute college boy standing near her. She tips her head to cuddle if you get close to her. She loves to be held with your arms around her. She also loves when you hold her hand which is something she would not tolerate. It wasn't until I watched her "flirt" with one of the male volunteers at her school that I realized, "Uh oh, her emotional age is catching up with her biological age!"
And that's a good thing. Here's an article about some of options parents and caregivers have about suppression of menstrual cycle which isn't an issue for Elisabeth right now.
Monday, February 4, 2013
Transition Bootcamp 2013
LAST CHANCE! REGISTER TODAY!
Please Join us for Transition Bootcamp 2013
February 9th
1:00pm-4:00pm
Location: Ohio Valley Goodwill Auditorium
10600 Springfield Pike, Cincinnati, Ohio 45215
Topics to be Covered:
· An overview of employment and personal development options following high school
· Information on funding sources and eligibility determination
· Provider Fair featuring a variety of agencies
TO REGISTER GO TO:http://dsagc.donordrive.com/event/Bootcamp13/
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Thursday, January 31, 2013
Erma Bomback's Vanity Clause
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 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."
"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.
Monday, December 10, 2012
There and Back Again...
I don't make these things up. Elisabeth comes up with stuff like this on her own. After reading over the symptoms of mastoiditis and looking at the picture, I realized we had something more than a bump on her head. It was a bump behind her ear I found on a visit to Portland Maine over Thankgiving break. I saw it while washing her hair and asked if anyone had bumped her head enough to cause a bump this size.
Well, we are all guilty because she's not the easiest 18 year old to get in and out of an airport taxi stand where security is yelling "move, move move!" Okay, buddy, cut her some slack for not being able to get out of the car on her own! Nor is it convenient for her to get on and off an airplane because sometimes she's so spastic that she cannot be carried down the aisle without bumping something! The restrooms were not up to her standards, either, so we had major mobility issues there, too! (We did run into Senator Lieberman ... )
When we got home from our trip, the bump started looking like a cyst or boil so visited our primary doctor who thought it could be several things given her history of cholesteatoma. The primary care prescribed a broad spectrum antibiotic and "wait and see" diagnosis from our ENT this Thursday.
The challenge for me is managing this bump turned "boil" oozing out from the back of her ear in two places. Peroxide, neosporin ointment, q-tips, and TLC. She's not even phased by all this, but she can't go to school in this condition so we are at home waiting on a primary care doctor to call about managing this yucky ooze coming out of her head.
This was suppose to be a fun week for Elisabeth. Swimming on Tuesday and a trip to the museum on Friday. It was a great year for Elisabeth health wise overall. No infections or anything to worry about in 2012 except that her ENT wanted to explore the ear area for cholesteatoma re-occurrence which was 40%. I guess now he has a good reason to proceed. Unfortunately, it requires a very invasive surgery complicated now by an infected mastoid. Exploring her ear for the culprit-- most likely a skin cyst or cholesteatoma -- that manifested itself in Elisabeth's series of unfortunate medical events.
Last hospital stay, Elisabeth was treated to a reading of Jane Austen. This time, I see a Tolkien fantasy about hobbits, elves, and dwarves in her near future.
Well, we are all guilty because she's not the easiest 18 year old to get in and out of an airport taxi stand where security is yelling "move, move move!" Okay, buddy, cut her some slack for not being able to get out of the car on her own! Nor is it convenient for her to get on and off an airplane because sometimes she's so spastic that she cannot be carried down the aisle without bumping something! The restrooms were not up to her standards, either, so we had major mobility issues there, too! (We did run into Senator Lieberman ... )
When we got home from our trip, the bump started looking like a cyst or boil so visited our primary doctor who thought it could be several things given her history of cholesteatoma. The primary care prescribed a broad spectrum antibiotic and "wait and see" diagnosis from our ENT this Thursday.
The challenge for me is managing this bump turned "boil" oozing out from the back of her ear in two places. Peroxide, neosporin ointment, q-tips, and TLC. She's not even phased by all this, but she can't go to school in this condition so we are at home waiting on a primary care doctor to call about managing this yucky ooze coming out of her head.
This was suppose to be a fun week for Elisabeth. Swimming on Tuesday and a trip to the museum on Friday. It was a great year for Elisabeth health wise overall. No infections or anything to worry about in 2012 except that her ENT wanted to explore the ear area for cholesteatoma re-occurrence which was 40%. I guess now he has a good reason to proceed. Unfortunately, it requires a very invasive surgery complicated now by an infected mastoid. Exploring her ear for the culprit-- most likely a skin cyst or cholesteatoma -- that manifested itself in Elisabeth's series of unfortunate medical events.
Last hospital stay, Elisabeth was treated to a reading of Jane Austen. This time, I see a Tolkien fantasy about hobbits, elves, and dwarves in her near future.
Tuesday, August 21, 2012
Sensory Processing Disorder Information
What Is Sensory Processing Disorder?
COMMUNITY SERVICE EVENT
Wednesday September 19, 2012
6:00 – 7:30 P.M.
Springfield Township Senior Center
9158 Winton Road
Dr. Laurie Jahnke will be presenting a FREE lecture on brain and nervous system function and their critical roles for social, motor and academic learning.
...If your child has been diagnosed with ADD/ADHD, Autism Spectrum Disorder, Sensory Processing Disorder or other learning disorders, you will not want to miss this presentation!
Learn of drug-free treatment options that can help “turn on the lights” to your child’s nervous system and allow them to reach their full learning potential!
Great for parents and teachers!
PLEASE PHONE 513-931-4300 TO RESERVE YOUR SEAT Space is limited- the first 50 people to register will be entered to win various raffle prizes that evening!
COMMUNITY SERVICE EVENT
Wednesday September 19, 2012
6:00 – 7:30 P.M.
Springfield Township Senior Center
9158 Winton Road
Dr. Laurie Jahnke will be presenting a FREE lecture on brain and nervous system function and their critical roles for social, motor and academic learning.
...If your child has been diagnosed with ADD/ADHD, Autism Spectrum Disorder, Sensory Processing Disorder or other learning disorders, you will not want to miss this presentation!
Learn of drug-free treatment options that can help “turn on the lights” to your child’s nervous system and allow them to reach their full learning potential!
Great for parents and teachers!
PLEASE PHONE 513-931-4300 TO RESERVE YOUR SEAT Space is limited- the first 50 people to register will be entered to win various raffle prizes that evening!
Monday, July 23, 2012
What To Expect Neo Natal Diagnosis of Agenesis of the Corpus Callosum
It's possible that many of the complications in global delays we experienced after our daughter's birth began in utero. Our baby, for example, didn't do what other babies do preparing for the journey through the birth canal. She was very subdued. Not active. She wasn't going to come out. In fact, I was on my maternity leave for 3 weeks and still didn't have the baby. Why did I wait?
Looking back, I wish that I would have taken the advice of the neonatal specialist at the Seton Center at Good Sam and had the baby around my due date. Instead, I opted to follow the advice of my Ob/Gyn who thought the placenta looked fine and suggested to wait it out. Of course, she didn't know anything about Agenesis of the Corpus Callosum then. Nobody knew anything about complications or delays so I waited and waited.
My Ob/Gyn ordered daily ultra sounds after I was 1 week overdue to check the placenta and organs. I probably should have followed my instincts because years later I learned that "cortical visual impairment and macula atrophy" which is written on her birth record generally results from oxygen deprivation at birth. So if you're concerned about your baby's ACC diagnosis, contact me at elisabethssite@yahoo.com.
If you're pregnant and concerned, write me at Elisabethssite@yahoo.com.
If you're pregnant and concerned, write me at Elisabethssite@yahoo.com.
Monday, June 25, 2012
Navigating ADA in 2011
What's new with ADA? Most of the changes are about navigation challenges that people using wheelchairs face everyday of their life.
Wednesday, April 18, 2012
Thank You President Obama & First Lady Michelle Obama
I want to be the first to congratulate you on a job well done. First, thank you for signing the Healthcare law so that my daughter will no longer be discriminated against because of her disability label. I also want to thank you for making it harder for insurance companies to discriminate against families by charging higher premiums due to pre-existing conditions or medical histories.
Secondly, as for responding to the challenges we face as a nation regarding energy consumption and responsible environmental stewardship, I would like to thank you personally for living up to your campaign promise. I also understand the challenges of economic sustainability so I applaud your efforts here as well.
Third, I would like to say thank you to our First Lady Michelle Obama for taking an interest in our children by educating families about childhood diseases resulting from obesity. We have so much to teach them about the impact of a healthy diet on their overall development. I'm also very happy about the little garden you planned for the White House, too. It inspired our family to add a few more planting beds in our own back yard so we have more control over what we feed our children.
I am sorry that more people haven't showed gratitude and appreciation for what you've done so far. I can't imagine a single American who will not benefit from the Healthcare law. I'm hoping that during your second term, we'll see even more improvements in the quality life for all Americans.
Thank you, again, for reaching out into the margins and acting on behalf of all people while also keeping focus on the big picture.
Kind regards,
Elisabeth's Mom
Secondly, as for responding to the challenges we face as a nation regarding energy consumption and responsible environmental stewardship, I would like to thank you personally for living up to your campaign promise. I also understand the challenges of economic sustainability so I applaud your efforts here as well.
Third, I would like to say thank you to our First Lady Michelle Obama for taking an interest in our children by educating families about childhood diseases resulting from obesity. We have so much to teach them about the impact of a healthy diet on their overall development. I'm also very happy about the little garden you planned for the White House, too. It inspired our family to add a few more planting beds in our own back yard so we have more control over what we feed our children.
I am sorry that more people haven't showed gratitude and appreciation for what you've done so far. I can't imagine a single American who will not benefit from the Healthcare law. I'm hoping that during your second term, we'll see even more improvements in the quality life for all Americans.
Thank you, again, for reaching out into the margins and acting on behalf of all people while also keeping focus on the big picture.
Kind regards,
Elisabeth's Mom
Thank You
I've received many e-mails over the years thanking me for writing about my experiences. Unfortunately I have to turn off the "comments" due to the spam I receive so I do appreciate the emails. I'll turn it on again.
Aloha!
Found Summer Harrison's blog that focuses on disability rights issues. Looks like they're having issues in Hawaii.
Matthew's Mom ACC All-Inclusive Site
A website start here from a different perspective living with an individual affected by Agenesis of the Corpus Callosum. The experience for each family is so unique and equally different is the "caretaking" aspect of these young children impacted by ACC.
Tuesday, April 17, 2012
Waivers, Levies, and Universal Design, Oh My!
One thing I truly value about Hamilton County Developmental Disabilities (HC/dd) formally known as 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 get you back on the track.
Just yesterday, I received a home visit from the OT/PT team through Bobbie 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 HC/dd 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..
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. Getting 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 Hamilton County Developmental Disabilities and 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 HC/dd (MR/dd) 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...
Just yesterday, I received a home visit from the OT/PT team through Bobbie 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 HC/dd 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..
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. Getting 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 Hamilton County Developmental Disabilities and 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 HC/dd (MR/dd) 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...
Friday, February 17, 2012
Ranting ...
Sixteen years and three doctor's office visits later after completing the necessary medical forms for her school, we find out from a new doctor that one of Elisabeth's diagnosis (cortical visual impairment) resulted from oxygen deprivation at birth.
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