Showing posts with label News Article. Show all posts
Showing posts with label News Article. Show all posts

Sunday, February 23, 2014

5 Things to know about Families Dealing with Disability

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I saw this link on Facebook to an article on Huffington Post ........ and I absolutely LOVE it .... so I wanted to share it.   I take no credit for it.



This is the original SOURCE ....  I take no credit for the following article....

5 Things You Should Know About Families Dealing With Disability

Posted: 11/07/2013 5:10 pm WRITTEN BY: 



Disability is part of my family's daily life and it has been since my oldest daughter was born with a chromosomal abnormality over seven years ago. My daughter's genetic disorder resulted in a variety of disabilities, both cognitive and physical, that impact nearly every aspect of our lives. Usually we go along with our routine, but sometimes I am struck by how little others know about disability and what life is like for us. I have been reminded of this recently and wanted to share five things I wish everyone knew about disability.
1. We really, really dislike the word "retarded." Please stop using it. Now. The r-word is loaded. It is pejorative. It is hurtful. For those of us with loved ones with cognitive disabilities, the use of the r-word turns them into lesser beings not worthy of the same dignity and rights of those not struggling with the same difficulties. Not everyone has thought about how using the r-word impacts those of us dealing with disability. I get that. But if we try to explain it to you please listen to why it is not okay to use the r-word even if, as I was told recently you "didn't mean it that way" by a woman who then stormed off somehow angry with me for trying to explain to her how her use of this hateful term impacts my daughter and my family.
2. Some disabilities are invisible. It would be convenient if everyone that disability made it obvious to the rest of the world in some way. Individuals who have visual impairments often use white canes or seeing eye dogs to help them navigate the world. Everyone knows that a wheelchair indicates that someone does not have full use of their legs. But, the person dealing with muscle weakness who can walk, albeit with difficulty, may look completely capable to a casual observer. The child who has autism and deals with sensory issues may look like a typically developing child having a bad day or a brat to you. A child with no obvious differences may have an oxygen monitor or feeding tube tucked away under clothing. But, these disabilities are real. They make life difficult, often on a level unimaginable to most. Remember that the next time you think someone is "faking" a disability for some perceived advantage, whether it's a parking spot closer to the door or skipping the line at Disney World. Most individuals with disabilities you cannot immediately recognize would gladly give up the small accommodations for which you may resent them if they could also give up the disability that entitles them to these accommodations in the first place.
3. It's okay to ask questions when disabilities are visible. My daughter uses an adorable wheelchair. Not all wheelchairs are cute, but hers is sky blue with a rainbow embroidered on the seat and has front wheels that light up if you push it fast enough. To other children it looks like a fun ride. Kids point at it on the street. They ask for rides. Usually, their parents try to shush them and pull them away. Well, guess what? I know that my daughter is in a wheelchair. She's been using it for years. When she's in it, it's clear to everyone that she has a disability. I don't mind questions. In fact, I encourage them, especially from other children whom I often allow to push my daughter's wheelchair a short distance to remove the mystery surrounding disability. I welcome the opportunity to explain to children that some people are just born differently. I don't mind discussing disability with adults who may wonder about our circumstances. It is only through open dialogue and communication that we can educate others about disabilities of all types and promote acceptance.
4. We are not heroes. Families that include a loved one with a disability often hear that they are amazing or that others don't know how they handle it all. But, the thing is, backing out is not an option. We did not take on a burden out of altruism. We deal with the circumstances we have been dealt because we have to, because we have no other choice. We deserve no special credit for this. I have no doubt that most of the people who make these statements to me would do the same if they were in my shoes. They wouldn't have a choice.
5. Be considerate. You can try to step into our shoes and not impose your own rules on us. It's not difficult to figure out some things that might make life easier for people with disabilities. But, sadly, most businesses and even schools and churches do not take the steps needed to welcome individuals with disabilities, such as installing ramps or elevators, until they are legally required to. If you want to be better, you can take small steps even when they are not legally required. You could open the door for a mother pushing a wheelchair even if it will delay you by a few seconds. You could ask your child to let a child with disabilities take a turn on the swing since it may be the only piece of playground equipment she could use. You can respect measures that have been put into place to help those with disabilities and their families by not sitting in clearly marked movie theater seats that have been especially designed to accommodate adaptive equipment. You can let the individual in the wheelchair on the elevator first, even if you have been waiting longer. The mother at my son's school was certainly not considerate when she told me recently that a handicapped parking space could only be used by a family with a child with disabilities who attended that school -- and not by a parent with disabilities or a family who may need to bring along a sibling with disabilities to drop-off. Imposing arbitrary, uninformed opinions about who "really" has a disability or need for accommodation is hurtful and harmful, especially when expressed in front of children who are still forming their opinions about disability and may be unsure how to react themselves.

Tuesday, December 4, 2012

"Therapy Boxes"

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I know I have some updating to do over here ... I'm hoping to get it done tomorrow.   (Or today as it's like, 3am ...) ....

BUT .......

I needed to share this right away.   Before I forget!

The other night we were watching the 11 o'clock news.  One of the leading stories was about how in a local school (Tacoma) there was a school ....   The part that got me was when the interview with the child's mother who broke the story.  He - somehow - got back by this PADDED ROOM where there was a kid in there crying and crying and the little boy felt so bad - he wanted to help -but couldn't.  Anyway - apparently this school has this padded room where the lock up students who are having emotional or behavioral issues.  There is a mother on there - interviewed - who's child is one of the ones who goes in there.  She's fully in support of this room saying people don't understand.... etc...  her so can get so out of control that he's a danger to himself and others.

READ AND SEE VIDEO HERE

So .. as a mother of children with unique needs...   I find it so disturbing.   I guess I can understand - to a point.  But ... I think it's torture.  There are other ways to handle these things.   In my opinion - this is so wrong.  This is a lazy way of dealing with this.  It's uneducated!  In a place of education - it's completely drips of being uneducated about how to positively help these kids.

What kills me the MOST MOST MOST is that there are 9 kids in this inclusion room and ALL NINE SETS OF PARENTS signed permission slips for their children to be locked up in this room! 

There is no way that I would EVER sign a permission slip allowing educators to be able to lock my child up in a room.

They say that kids are locked up there from anywhere of 15 minutes to a couple hours.  And if that little boy found that room and no adult was around - WHAT THE HELL.  What if something happened??? What if that child that was locked up needed to use the bathroom.  What if something happened and he hurt himself or needed help or whatever.  It BLOWS MY MIND.

The district responded to the outcry from parents after it went viral ...   this is a video from the day after the story broke. 



Then the very next night, this appeared on Nightline.   And it just disturbed me even worse!!!


 This is outrageous.  That's my thoughts on it.   I would never do that to my child. 

Monday, January 24, 2011

Baby Kaleb - Shaken Baby Syndrome Survivor...

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In May 2007 .... one of the worst nightmares a parent could have happened to one couple....  Their beloved son, Kaleb, who was their pride and joy, was hurt by the person they trusted to take care of him.  
If you aren't familiar with the story...  here is the story ...  (this is copied from a website

As told to me by Kristy.  Forgive me if any details are incorrect. 

Like any responsible parents, Kristy and Josh Schwade wanted what was best for their only child, Kaleb.  They did a background check on their day care worker, and even interviewed her in her home for two hours.  Kristy was even willing to drive 20 miles out of her way to provide, what they thought to have been, "optimum" care in a good neighborhood. 

On May 9th, 2007 their worst nighmare was brought to fruition.  After being in the care of this home day care worker only five times, Kaleb was picked up by his Grandmother and Aunt.  They noticed that he was lethargic and experiencing obvious breathing abnormalities.  The caregiver told them he was ill, but Kaleb had just visited the doctors the day before and was given a "clean bill of health".  When Kristy arrived at her mother's home to pick Kaleb up, she described him as "having no life in his body".  She tried repeatedly to wake him, but with no avail.  She and her father got in the car and rushed to the hospital.  While in the vehicle, Kristy lifted Kaleb's little eyelids.  She noticed that his pupils were different sizes.  Being the wife of an EMT, she knew immediately that this was the sign of a head injury- Kaleb needed IMMEDIATE care.  They stopped at the nearest firestation.  The ambulance took him to the nearest hospital, and he was classified as a "trauma alert".  He was then life-flighted to Tampa General Hospital, and was admitted to the Pediatric Intensive Care Unit (PICU).  He was diagnosed as having Shaken Baby Syndrome.  They also discovered that he had been SMOTHERED! 

Kristy is not currently working, and she and Josh spend every possible moment by their young son's side.  Medical bills, cost of gas, lawyer fees (I assume they will begin building), and general living expenses are mounting. 

When something happens to your child, your world STOPS.  Suddenly it doesn't matter that your "roots" are growing out and you are getting split ends.  It doesn't matter that your neighbor is parking his dumpy car in your parking spot.  You no longer care that someone cut you off on the highway, or that someone jumps infront of you in line at the grocery store.  Nothing else matters but your child.

Kaleb is their world.  The doctors. The PICU.  It's all that matters now. 

This family is not asking for anything other than your prayers.   

This situation has become widespread because a friend of Kristy's decided to forward her bulletin asking people to pray for the family.  PLEASE support them by spreading the word about this page.  The more people who are aware, the more people who have the opportunity to bless this family. 

Thank you for viewing this page, and for supporting Kaleb and his family. 

Oh, and many of you have been concerned whether or not the sitter has been charged.  YES charges have been pressed, but she is currently out of jail on a $5,000 bond. 

Below is Kristy's original bulletin posted shortly after the incident. 
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Hello everyone...

I write you this message in grief in faith.

My son Kaleb was rushed by ambulance to the emergency room on Wed. after we picked him up from the babysitters house. At UCH they determined that Kaleb had a SubDural Hematoma (His brain is bleeding). He then was Bayflighted (helicopter) to Tampa General Hospitals Pediatric Intensive Care Unit on a Trauma Alert.

Doctors determined that Kaleb was shaken while at the homecare he goes to. He is suffering from Shaking Baby Syndrome.

When we first arrived at the hospital they put a pressure gage into his head to moniter the Intercranial Pressure (The pressure that the brain is under due to swelling and Bleeding). He wasn't doing too well all day yesterday, his pressure in his head was ranging between 29-40 and the normal pressure is between 5-20. So doctors decided that the best thing to do was to put a tube into his brain to drain spinal fluid from his ventricle. This procedure was a sucess and brought the pressure down.

Today however, they did a Cat Scan and saw that Kaleb is now suffering from a stroke and has formed a new bleed in the brain.

I believe in Miralcles! I believe that prayer works. I am asking you, all of my friends, whether you know me well or not to PLEASE pray for my little boy Kaleb. He needs a miracle and we need your help!

I know some of you may not believe in God... But he exists! And he's already performed one miracle. Please I ask you, I beg you, to Pray for my little boy and my family. He is my everything

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 I followed the story closely, writing Kristy several times....  My heart broke for them, I had just had Nathan right before this happened...  and I prayed a lot for that little boy.  I was excited on the good days, and worried and sad on the bad days, praying all the while.  


The babysitter finally ADMITTED to what she did to Kaleb, and it was finally all over in June 2010.   Ex-Day Care Worker Pleads Guilty In Shaken-Baby Case ....


Tonight - however ....  just a few hours ago.........  Kaleb became an Angel.  


Kaleb's story touched so many people, touched so many lives....  grabbed so many hearts...  on Myspace and Cafemom....  and anyone who heard the story....  


Kaleb feels no more pain, but his poor parents are missing him greatly.    Kristy posted this on her Myspace: 

Kaleb's last update.

First off I would like to say thank you for all of your prayers throughout the years. 

Kaleb went to heaven today at 5:08pm. He is now an angel and has been given the strength to walk and run and play with the other children angels. His death was very quick and he seemed very comfortable. I cannot express the gratitude for all of you and your support throughout the years. We find peace knowing that Kaleb is in heaven with Jesus and feels no pain. 

Thank You





Here is a WONDERFUL interview done with Kristy August 2010 (the above picture was shared there) ....  


The first picture I shared, was taken from Kristy's Myspace - from one of their fundraising events....... I thought, it was fitting. 

Do not stand at my grave and weep
I am not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circling flight.
I am the soft starlight at night.
Do not stand at my grave and cry,
I am not there; I did not die.


Kaleb - I hope that you are running and laughing and talking up a storm!  Enjoy Heaven baby boy!!  You touched so many lives!!

Wednesday, May 20, 2009

Autism linked to Chromosome 17 now?



So in a new article, from a new study, Autism is now (also) being linked to Chromosome 17 now... Here is the article... A Genetic Clue To Why Autism Effects Boys More ... check it out!

Wednesday, January 16, 2008

Choromosome 16 & Autism Linked...

Ya'll know that my son (Noah) ... has Mosaic Trisomy 16 ... well if you didn't you do now.. lol.. anyway - we've thought that he has had autistic traits in the past... just certain things that make you think that just SOMETHING isn't quite right... but the only thing that holds us back from him being tested or considered or whatever... is that he is a social bug :) LOL... he loves to carry on convos, and everything else... he likes his friends... but he gets very very upset if he's alone... well, that is the oppisite of what "autistic" kids are usually like... so I donno what to think, but then I read this...

http://www.newsday.com/news/health/ny-liauti0110,0,1961343.story


Study finds link between genetic flaws, autism

BY DELTHIA RICKS
delthia.ricks@newsday.com

January 10, 2008

Scientists have pinpointed relatively rare chromosomal flaws that they say not only substantially increase the risk of autism spectrum disorders in some children, but also provide a new target for genetic screening.

Findings by a collaborative team of researchers at 14 leading universities and medical centers now confirm that specific telltale defects on chromosome 16 can result in autism in about 1 percent of people who inherit the flaws.

There are 46 chromosomes in each of the 10 trillion cells that make up the human body. Results from the investigation, which was led by scientists at Children's Hospital in Boston, confirm earlier genetic research, including studies by scientists at Cold Spring Harbor Laboratory.Using sensitive new research tools, members of the Autism Consortium scanned the entire human genome and discovered that sections of chromosome 16 are either deleted or duplicated in some people with autism spectrum disorders. These neurodevelopmental conditions can range from mild to severe, and include symptoms ranging from learning delays to more complex problems in which children avoid social interaction or do not speak.

Dr. Bai-Lin Wu, a senior author of the study that was released online yesterday by the New England Journal of Medicine, said roughly 10 percent of all cases of autism can be traced to an underlying genetic cause.

"When you scan the whole genome, you scan every chromosome," Wu said yesterday. "But chromosome 16 was the one we found that had significant difference."

Because identifiable miscues on chromosome 16 can be isolated, he said, his laboratory can seek out the variation and tell parents interested in determining whether their child possesses a flaw. "This is the first [autism] study that combines research findings with clinical applications," Wu said of the screening possibility that the new analysis offers.

Dr. Michael Wigler, a molecular geneticist at Cold Spring Harbor Laboratory who has led a series of major studies on the genetics of autism, said the consortium's work helps elucidate its molecular underpinnings.

"I think this is an extremely well-done study," Wigler said yesterday. "It proves our theory that autism can be caused by spontaneous mutations," he said of DNA missteps that can occur randomly. "Sometimes the mutation can cause disease in the carrier and sometimes it doesn't.
"This locus," he said of the spot on chromosome 16 that scientists found to be flawed, "was actually first found by us. But we do not do clinical testing."

Wu said the study involved examining the DNA of more than 3,000 people, which included 1,441 autistic children, DNA from their parents and controls, who are people without the disorder.

The team found a segment of 25 genes on chromosome 16 that was missing in some of the children in the study. None of their parents possessed the flaw, which suggests - as Wigler has argued all along - that autism can occur as a spontaneous mutation. However, in other children whose DNA was analyzed, there was a duplication of chromosome 16 that also occurred in at least one parent.

Portia Iversen, a Los Angeles-area activist who helped develop a large DNA database now maintained at the National Institutes of Health in Bethesda, Md., said genetic studies will help demystify many of the unknowns about autism, which is estimated to affect 1 in every 150 children nationwide.

"We've known for some time that chromosome 16 is one of the hot spots in autism," added Iversen, the mother of a teenage son with the condition. "There were studies as early as the 1970s and '80s that showed autism is genetic and that if you have one child with autism, your chances are much higher of having another child with it."

The DNA database Iversen organized invited families to contribute blood samples. The database was used by Cold Spring Harbor Laboratory scientists for their genetic research.

Dr. Steven Pavlakis, director of pediatric neurology at Maimonides Medical Center in Brooklyn, applauded the new study by Wu and his colleagues.

"This tells you that something genetic underlies at least a portion of cases," he said. "We don't know how these cases differ from each other clinically."