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!
Tuesday, August 21, 2012
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.
Tuesday, February 7, 2012
What Not To Say....
I'm sure people have the best intentions, but it's really bothering me how people respond to the death of a child with severe disability labels.
I realize people say things out of nervousness. Lord knows I've been known to say the dumbest things. But when it comes to the death of any child, regardless of the circumstances or disability, the sorrow and pain is the same for any parent and sibling. Sometimes hugging the parent and saying "I will miss her, too" is just enough. Take over a meal or cookies for the siblings, but please, please, please, don't try to minimize or maximize the significance of someone's life due to their disability. People are not their disability labels. Regardless of how difficult disability might look to someone from the non-disability community, that person will be missed all the same with or without their disability.
Just be there to comfort and listen.
Monday, February 6, 2012
Condolences & Sympathy
Elisabeth's young friend, Kayla, passed away last week. Kayla was just 12 years old. Elisabeth and her family sends their deepest condolences and sympathy to Kayla's family and friends.
Friday, January 27, 2012
Attention High School Students with IEPs & 504 Plans
Don't want to miss any of the four sessions designed for parents who have students transitioning -- when high school ends and the bus stops coming!
Dates: February 7, February 21, March 6, and March 20th
Time: 6:30 to -9 pm
No fee! No cost!
Where: 5th Floor Conference Room in Children's DDBP Building, 3430 Burnett Avenue, 45229
For more information or to register by phone, contact Barbara at 513-221-4606
Register here pressing "buy tickets" (no charge)
Dates: February 7, February 21, March 6, and March 20th
Time: 6:30 to -9 pm
No fee! No cost!
Where: 5th Floor Conference Room in Children's DDBP Building, 3430 Burnett Avenue, 45229
For more information or to register by phone, contact Barbara at 513-221-4606
Register here pressing "buy tickets" (no charge)
Friday, January 20, 2012
Friday, December 16, 2011
What I Want For Christmas ...
We need Gov. Kasich'a leadership to stop HB136 - a house bill ready for vote that allows public funds to be used for vouchers for families making $95,0000 less to pay for parochial and private tuition.
HB136 is misleading voters and will only anger Ohioans down the road when they realize they've been duped and lead astray by a small group of Ohioans and their representatives who have a political axe to grind about unions and public school education. Furthermore, they're using our children with disabilities to pass a bill that will have no impact on their ability to receive special services outside the school district due to current statues and laws.
First of all, it is the Governor's responsibility to clarify for voters that voucher money is not going to fall from the sky, the Ohio Treasury, or out of taxes currently being used to pay for public schools. He is required to be upfront about where Ohio district schools will get the additional money to give vouchers to 80,000 families making less than $95,000 & currently attending private and parochial schools. Last time I checked the census, the majority of Ohioans make less than $95,000.
It is also Governor Kasich's responsibility to inform families who believe that a "voucher" will give them direct access to special education services. That's not true. It has always been the school district representatives & IEP team (parents included) that determine "services" according to current state statutes and federal law. No voucher or state legislation can change that unless they change current Ohio statutes and federal law.
If students require special education services that cannot be provided by the school district due to their disability, federal law requires the school to provide it through "continuum of alternative services." This is how my 17 year daughter is attending a special therapy school operated by HC/dds in Cincinnati since she was school-age ready. I didn't need a voucher to do this 11 years ago because special education rights are guarenteed and protected by current state statutes during Gov. Taft's administration complying with federal law. He actually closed hundreds of state funded MR/dd therapy schools and discontinued contracts with service organizations throughout Ohio because his administration believed there was a duplication of services provided by the school districts.
By supporting and signing this bill, Gov. Kasich will be perpetuating a legacy for increasing property taxes because HB 136 turns the state’s obligation of providing a thorough and efficient “system” of public education into a private benefit resulting in unprecedented levels of voucher expansions that will have a financial impact for every school district in the state! Down the road, tax payers who pay for for public education will eventually see that Gov. Kasich doubled the tax burden. Does he want his legacy to be one where he wasted more tax payer money through repeals, lawsuits, and higher taxes by supporting and signing this voucher bill?
HB136 is misleading voters and will only anger Ohioans down the road when they realize they've been duped and lead astray by a small group of Ohioans and their representatives who have a political axe to grind about unions and public school education. Furthermore, they're using our children with disabilities to pass a bill that will have no impact on their ability to receive special services outside the school district due to current statues and laws.
First of all, it is the Governor's responsibility to clarify for voters that voucher money is not going to fall from the sky, the Ohio Treasury, or out of taxes currently being used to pay for public schools. He is required to be upfront about where Ohio district schools will get the additional money to give vouchers to 80,000 families making less than $95,000 & currently attending private and parochial schools. Last time I checked the census, the majority of Ohioans make less than $95,000.
It is also Governor Kasich's responsibility to inform families who believe that a "voucher" will give them direct access to special education services. That's not true. It has always been the school district representatives & IEP team (parents included) that determine "services" according to current state statutes and federal law. No voucher or state legislation can change that unless they change current Ohio statutes and federal law.
If students require special education services that cannot be provided by the school district due to their disability, federal law requires the school to provide it through "continuum of alternative services." This is how my 17 year daughter is attending a special therapy school operated by HC/dds in Cincinnati since she was school-age ready. I didn't need a voucher to do this 11 years ago because special education rights are guarenteed and protected by current state statutes during Gov. Taft's administration complying with federal law. He actually closed hundreds of state funded MR/dd therapy schools and discontinued contracts with service organizations throughout Ohio because his administration believed there was a duplication of services provided by the school districts.
By supporting and signing this bill, Gov. Kasich will be perpetuating a legacy for increasing property taxes because HB 136 turns the state’s obligation of providing a thorough and efficient “system” of public education into a private benefit resulting in unprecedented levels of voucher expansions that will have a financial impact for every school district in the state! Down the road, tax payers who pay for for public education will eventually see that Gov. Kasich doubled the tax burden. Does he want his legacy to be one where he wasted more tax payer money through repeals, lawsuits, and higher taxes by supporting and signing this voucher bill?
Tuesday, November 29, 2011
Ohio's Issue 3: The One that Got Away ...
Issue 3 passed by a much larger margin because voters thought the new healthcare bill the President signed off on last year took away choice? The official language of the issue said it was a proposal designed to "preserve the freedom of Ohioans to choose their health care." What if you didn't have choice before the healthcare bill was signed into legislation? What if the new healthcare bill actually opened the door for children with disabilities?
Elisabeth never had a choice about healthcare through Anthem before the healthcare was signed into legislation. Her parents were stuck paying higher premiums because of her "pre-existing condition." Never mind that that none of the claims we've filed since her birth had a single thing to do with her "pre-existing condition."
A child who survived leukemia didn't have any choice, either. The new healthcare law protected all children from insurance companies hiking up premiums because they know they can. Parents of children surviving cancer had no other alternative but to pay the high premiums instead of looking for more affordable healthcare. They were denied from choosing a healthcare option that would give their child the best care for the little money they had.
Issue 3 actually took away the rights of the individuals choose their health care. The individuals who were paying thousands of dollars in monthly premiums just to keep their health care for their child with disability.
People (who don't have children with disabilities) wonder why we parents who have children with disabilities feel like we live on the margin in our society? We're not asking for center stage or the spotlight. All we want is a system that is fair for our children. Issue 3 was clearly one-sided with a much broader political agenda under which none of our children ever fit in.
Elisabeth never had a choice about healthcare through Anthem before the healthcare was signed into legislation. Her parents were stuck paying higher premiums because of her "pre-existing condition." Never mind that that none of the claims we've filed since her birth had a single thing to do with her "pre-existing condition."
A child who survived leukemia didn't have any choice, either. The new healthcare law protected all children from insurance companies hiking up premiums because they know they can. Parents of children surviving cancer had no other alternative but to pay the high premiums instead of looking for more affordable healthcare. They were denied from choosing a healthcare option that would give their child the best care for the little money they had.
Issue 3 actually took away the rights of the individuals choose their health care. The individuals who were paying thousands of dollars in monthly premiums just to keep their health care for their child with disability.
People (who don't have children with disabilities) wonder why we parents who have children with disabilities feel like we live on the margin in our society? We're not asking for center stage or the spotlight. All we want is a system that is fair for our children. Issue 3 was clearly one-sided with a much broader political agenda under which none of our children ever fit in.
Friday, October 14, 2011
Respite Care Night!
Respite Care Night
Saturday, October 22, 2011
6-9 PM
... White Oak Christian Church
The Special Needs Ministry of White Oak Christian Church
is offering an evening of FUN activities for children with special needs AND their siblings. Parents can take a break and enjoy a night out!
This event is FREE but you must register. Registration will be open until all spots are filled. Children ages 0-18 are invited to attend.
For more information or to register, visit our web site: www.thewocc.com
Saturday, October 22, 2011
6-9 PM
... White Oak Christian Church
The Special Needs Ministry of White Oak Christian Church
is offering an evening of FUN activities for children with special needs AND their siblings. Parents can take a break and enjoy a night out!
This event is FREE but you must register. Registration will be open until all spots are filled. Children ages 0-18 are invited to attend.
For more information or to register, visit our web site: www.thewocc.com
Thursday, September 15, 2011
Err on the Side of Safety
So I got this call around 3:30 pm stating in a "matter-of-fact" tone the vehicle transporting my daughter had an accident and that she's okay.
The phone call was not from the police officer or anyone qualified to verify if Elisabeth was okay. The call came from the business office of the transportation service who was notified by the driver. I didn't get any details other than "she's on her way home" and "they had to switch vans" and it's a "fender bender thing" and "I am required to notify you that there was an accident."
No big deal, right?
So I contacted the non-emergency police dispatcher numbers to verify exactly what happened. Elisabeth is non-verbal and cannot communicate if there is something wrong with her. I heard from the police dispatcher there was an accident and no injuries were reported. The police officers were attending the scene and someone would get back with me. One hour later, Elisabeth arrived home in a van with a dried bloody nose and blood on her shirt.
So I asked the driver what happened. He identified himself as the mechanic for the transportation company. He pointed to the driver sitting on the bench behind Elisabeth's chair.
So I asked the driver if he was okay. And he nodded. Then I asked what happened and if there was anything I should know about the impact. He was unintelligible. So I asked him, "Are you a parent? If this was your child and she was unable to tell you what happened, what would you do?"
He just looked at me blankly. The mechanic answered, "Do what you think is best for your child."
So I asked, "How was anyone able to determine if Elisabeth sustained any injuries? Was there a police officer or medic present?"
I was told, "Yes. The police officer wiped blood from her nose."
I asked, "Can anyone tell me if she hit her head or her if her chair tipped or wobbled from the impact or if it was a severe enough impact that she could have sustained internal injuries? Did she cry? Was she upset?"
No answer.
Okay, I get it. This isn't about my daughter's safety anymore. This about their procedure.
Finally, the traffic police officer returned my call. He reported the van was traveling on the Norwood Lateral and came to a sudden stop, hit the car in front, and was steered off the road hitting a tree. The police officer stated when he arrived Elisabeth was already off the van. She was taken off by the driver of the van. I asked, "Are you the officer who wiped the blood from her nose?"
He said, "Yes. I asked the driver if he thought she was okay."
So I asked, "How would he know? This was the first time he picked her up. It's never the same driver with UTS. Who determined if Elisabeth sustained any injuries since she cannot communicate what happened?"
The officer apologized. He said, "I took the driver's word that that knew her."
So I asked, "Looking at that accident, the impact, the damage to the van and wheelchair, would you have taken my daughter to the hospital if she was your child? "
He apologized, again, and asked, " Is she okay?"
Finally, somebody actually gets it! Thank you, God!
I told him, I'm not really sure. Her Dad took her to the hospital to check things out. I told him, "You know it's very difficult for us to determine when things are not right with Elisabeth. I imagine it would be very difficult for a stranger to determine if something was wrong. It's a learning experience for all of us."
I asked him, "Did you notice any marks on the wheelchair to see if there was any impact? Any scratches or dents? That would indicate something, right?"
He said that the experience really opened his eyes to the challenges many kids with disabilities have when there are traffic accidents.
After I hung up with the police officer, I called the transportation company about their "safety procedure" and shared what the police officer told me about the accident. A "fender bender" it was not. The driver hit the car in front, and drove the vehicle into a tree. The van had to be towed.
Next, I suggested accidents involving a child with or without disabilities should be handled by the traffic officers and medical staff especially when the drivers do not know the children or advised to say as little as possible. The driver in this case should have said, "I do not know this child and cannot determine whether she is injured or not." It should also be part of the procedure for a police officer to make a report out on the wheelchair for signs of impact or stress and also look at the straps and buckles securing the wheelchair for signs of stress.
Elisabeth just came home from Children's Hospital. Her nose has a small cut inside so she hit something. It was swollen. We were told that because they did not see the typical abrasions from shoulder and lap belts, it's difficult to determine the extent of her injuries. But, if we noticed any changes in her behavior or she vomits or if her nose starts to bleed to bring her back to the ER. In hindsight, I recognized that at the very least she experienced something that scared her. Her diaper when she arrived home directly after the accident was full and she was soaked. If he lifted her out of the chair, he must have noticed she was soaked which indicated that at the very least, she was scared ...
The phone call was not from the police officer or anyone qualified to verify if Elisabeth was okay. The call came from the business office of the transportation service who was notified by the driver. I didn't get any details other than "she's on her way home" and "they had to switch vans" and it's a "fender bender thing" and "I am required to notify you that there was an accident."
No big deal, right?
So I contacted the non-emergency police dispatcher numbers to verify exactly what happened. Elisabeth is non-verbal and cannot communicate if there is something wrong with her. I heard from the police dispatcher there was an accident and no injuries were reported. The police officers were attending the scene and someone would get back with me. One hour later, Elisabeth arrived home in a van with a dried bloody nose and blood on her shirt.
So I asked the driver what happened. He identified himself as the mechanic for the transportation company. He pointed to the driver sitting on the bench behind Elisabeth's chair.
So I asked the driver if he was okay. And he nodded. Then I asked what happened and if there was anything I should know about the impact. He was unintelligible. So I asked him, "Are you a parent? If this was your child and she was unable to tell you what happened, what would you do?"
He just looked at me blankly. The mechanic answered, "Do what you think is best for your child."
So I asked, "How was anyone able to determine if Elisabeth sustained any injuries? Was there a police officer or medic present?"
I was told, "Yes. The police officer wiped blood from her nose."
I asked, "Can anyone tell me if she hit her head or her if her chair tipped or wobbled from the impact or if it was a severe enough impact that she could have sustained internal injuries? Did she cry? Was she upset?"
No answer.
Okay, I get it. This isn't about my daughter's safety anymore. This about their procedure.
Finally, the traffic police officer returned my call. He reported the van was traveling on the Norwood Lateral and came to a sudden stop, hit the car in front, and was steered off the road hitting a tree. The police officer stated when he arrived Elisabeth was already off the van. She was taken off by the driver of the van. I asked, "Are you the officer who wiped the blood from her nose?"
He said, "Yes. I asked the driver if he thought she was okay."
So I asked, "How would he know? This was the first time he picked her up. It's never the same driver with UTS. Who determined if Elisabeth sustained any injuries since she cannot communicate what happened?"
The officer apologized. He said, "I took the driver's word that that knew her."
So I asked, "Looking at that accident, the impact, the damage to the van and wheelchair, would you have taken my daughter to the hospital if she was your child? "
He apologized, again, and asked, " Is she okay?"
Finally, somebody actually gets it! Thank you, God!
I told him, I'm not really sure. Her Dad took her to the hospital to check things out. I told him, "You know it's very difficult for us to determine when things are not right with Elisabeth. I imagine it would be very difficult for a stranger to determine if something was wrong. It's a learning experience for all of us."
I asked him, "Did you notice any marks on the wheelchair to see if there was any impact? Any scratches or dents? That would indicate something, right?"
He said that the experience really opened his eyes to the challenges many kids with disabilities have when there are traffic accidents.
After I hung up with the police officer, I called the transportation company about their "safety procedure" and shared what the police officer told me about the accident. A "fender bender" it was not. The driver hit the car in front, and drove the vehicle into a tree. The van had to be towed.
Next, I suggested accidents involving a child with or without disabilities should be handled by the traffic officers and medical staff especially when the drivers do not know the children or advised to say as little as possible. The driver in this case should have said, "I do not know this child and cannot determine whether she is injured or not." It should also be part of the procedure for a police officer to make a report out on the wheelchair for signs of impact or stress and also look at the straps and buckles securing the wheelchair for signs of stress.
Elisabeth just came home from Children's Hospital. Her nose has a small cut inside so she hit something. It was swollen. We were told that because they did not see the typical abrasions from shoulder and lap belts, it's difficult to determine the extent of her injuries. But, if we noticed any changes in her behavior or she vomits or if her nose starts to bleed to bring her back to the ER. In hindsight, I recognized that at the very least she experienced something that scared her. Her diaper when she arrived home directly after the accident was full and she was soaked. If he lifted her out of the chair, he must have noticed she was soaked which indicated that at the very least, she was scared ...
Saturday, May 21, 2011
Buyer Beware ...
Advice from Elisabeth's Uncle John:
While many of the financial planners are legit, there are similar groups positioning themselves as financial planners, when in reality are thinly veiled product pushers.
Blogging about special interest groups is a broad topic; families have very different needs. Just like Elisabeth, the nuances of each family is very different from others. I am a big believer in the expression how you structure your investments (i.e. trusts, and specific disciplines in investing) is much more important than what you ultimately invest in, whether it be insurance,stocks, mutual funds or annuities.
My advice here - start with the legal side of structuring assets for adult children with disabilities. This is where you need to understand structure. The investments will fall in place from there.
While many of the financial planners are legit, there are similar groups positioning themselves as financial planners, when in reality are thinly veiled product pushers.
Blogging about special interest groups is a broad topic; families have very different needs. Just like Elisabeth, the nuances of each family is very different from others. I am a big believer in the expression how you structure your investments (i.e. trusts, and specific disciplines in investing) is much more important than what you ultimately invest in, whether it be insurance,stocks, mutual funds or annuities.
My advice here - start with the legal side of structuring assets for adult children with disabilities. This is where you need to understand structure. The investments will fall in place from there.
Wednesday, April 27, 2011
Valerie's Mom
I was in high school when I first heard her sing and remember the life changing interview she gave after the birth of her daughter, Valerie. Not everyone can do this with the grace and dignity that Phoebe had.
Phoebe Snow dies at 60; singer of 1974 hit 'Poetry Man'
Phoebe Snow dies at 60; singer of 1974 hit 'Poetry Man'
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