Thursday, December 30, 2010

Never Judge a Fat Guy


My daughter got an ipod touch for Christmas which has been difficult to pull out of her hand. Recently on an airplane she wrote this on her ipod and emailed it to me.

"Never judge a fat guy by his look. Today while sitting on the airplane
a fat guy sat down next to my mom, me being in the window seat glanced
over to see a fat guy sitting next to her.

The guy was very big with gray hair sticking out from his dark brown hair
and a mustache a little more gray then brown. My first thought was, that
sucks for my mom. About 20 minutes after, my mom had her computer out
(she had been working on a drawing for her architects) the man leaned
over and asked her what program she was using because he was an architect.

My mom told the man and they talked about it for about five minutes, my
mom then proceeded to have the man help her with the design she was working
on and they then talked for another twenty minutes.

I know it sounds cheesy that I'm saving this but I'm a loser who ALWAYS
forgets stuff and I felt bad because he was very nice. I'm still listening
to them talk. I think my mom made a new friend.
"

I did make a new friend.

I think people that look different are judged by their outward appearance. It is everyone's responsibility, especially mine as a parent to role model that everyone is valuable and important and outward appearance doesn't always reflect the beauty inside.

In this case, my new friend brought me new insights and knowledge and helped me overcome design obstacles with which I was wrestling. Thank you friend.

Thursday, December 16, 2010

10 things I learned working with developmental disabilities

It's good to periodically review some of the lessons life teaches you... here are a few of the things I am learning as a student in occupational therapy working with kids that have severe cognitive impairments...

10. It’s good to wash your hands
A lot of the kids I work with think that putting soap on their hands and rinsing it off is enough… learning how to wash hands independently is an important skill that should not be overlooked!

9. Don’t be afraid of the obvious
I learned yesterday from a young man that it is important to choose your battles.  I wanted to have him practice putting his coat on and off…. He only wanted his coat on.  After a few minutes – I had to settle for the obvious… he was going to win this battle and his coat was gonna stay on – so… we began learning how to zip coats instead 

8. Don’t be afraid of a mess
This lesson was from the kids that I teach how to use utensils at the table.  It’s okay to be a little messy as long as you are learning… long towels work as good bibs too 

Click "read more" for more...

Wednesday, December 15, 2010

Wheel chair for High/Low Tone

activeA vendor came in today and mentioned a type of wheelchair that I have never seen before. The features of the chair allow a child with high or low tone movement.  

 I was wondering if any one reading this has seen this chair in action and can tell me if they like it or not?


Click "read more" to learn about features for this chair and others like it...

Mother with Aspergers shares insight into autistic behaviors

An Article Found at: "Autistic Self-Advocacy Network"
"Melody is not only raising two sons with Autism Spectrum Disorders (ASD), she also lives with one herself. Like my 7-year-old son Ethan, Melody lives with Asperger's Syndrome. Thanks to her unique point of view, Melody often has very helpful ideas and suggestions for other parents raising kids living with ASD.


Click "read more" to complete the article 

Therapeutic Benefits of Soaking, Jacuzzi and Air Spa Tubs



Basic Benefits of Bathtubs

· Increased Blood Circulation.

· Muscle therapy improved blood circulation assists in relaxing tense muscles.

· Quicker recovery from fatigue and injury.

· Better Sleep, soaking in hot water for 15 minutes (approximately 90 minutes before going to bed) is an effective way to naturally encourage and induce the body into sleep.
· Relieve arthritis.

· Relieve stress due to the release of endorphins (which relieve tension and create a natural 'high').

There are a few different types of bathtubs on the market.


Click "read more" find out

Down's Syndrom Marriage

‘Monica & David’ Explores Marriage With Down Syndrome

When Monica and David Martinez got married five years ago, they were not your average bride and groom — both have Down syndrome. Deeply in love and committed to each other, their union nonetheless put the couple among a minority of people with developmental disabilities walking down the aisle.
Filmmaker Alexandra Codina — who is Monica’s cousin — followed the couple through their wedding and first year of marriage. The resulting documentary “Monica & David” captures the couple as they adjust to life together and struggle to define their own independence.
Ahead of the premiere of “Monica & David” on HBO Oct. 14, Codina spoke with Disability Scoop.
The marriage of David and Monica Martinez is the subject of "Monica & David" premiering on HBO Oct. 14. (Courtesy: HBO)
Click "Read More" to read the article

Monday, December 13, 2010

Death of a Severely Impaired Child


Since September two children on my caseload have died. Many of the children I work with are medically fragile and their life expectancy is short. The most recent child to pass was a girl, we'll call her Mia.

Mia's mom and I spoke a week before Mia died. Mia was having health issues, we were discussing the possibilities of surgeries etc. At one point in the conversation Mia's mom and I discussed what it was like being the parent of a severely impaired child. Mia's mom said she would often look at other children who were running or playing and think, 'Mia will never do that. Why does Mia have to miss out on running and playing. Why does Mia have to deal with all of these health issues and a failing body? Why is it my child?'

I don't know.

I watch the parents of the severely impaired children with complex health issues. I'm not sure how they make it through all of the hospitalizations, medications, physicians, and equipment. I am often very impressed by their knowledge of their child, tone issues, feeding, and positioning. I learn from these parents not only what it means to be an awesome mom or dad but also medical procedures, feeding tips, how to find a good doctor and much more.

One thing I learned from a parent of a severely impaired child when my own daughter was being hospitalized frequently was don't waste time with an MD if your child is having severe medical problems go to the specialists. Going to a specialist ended repeated hospitalizations for my daughter, thank you Barb S.

I guess my point is, I miss the kids that have passed, but I feel their quality of life is better now without their defunct bodies. I admire the dedication of the parents and the incredible amounts of knowledge these parents acquired and shared with me.

I don't know why they had to lose their children, I just hope that what they learned doesn't go to waste. Maybe their child was in their life to lead them in a new direction and help them to help others, or just show them a new way of living and looking at the world, at least that's what these kids have done for me.

Saturday, December 11, 2010

Playing with Severely Impaired Special Needs Kids - Part 1

As professionals working with children that have severe disabilities we have found that there are ways to play with common toys and connect with your loved one and motivates them to move and do things you may not have seen before!  These short clips reveal just that - simple techniques of how to make "play time" with your child more fun for both them and you.  

This video is embedded through YouTube. 
What do you find that severely impaired kids like to play with?


Playing with Severely Impaired Special Needs Kids - Part 2

As professionals working with children that have severe disabilities we have found that there are ways to play with common toys and connect with your loved one and motivates them to move and do things you may not have seen before!  These short clips reveal just that - simple techniques of how to make "play time" with your child more fun for both them and you.
This video is embedded through YouTube

Playing with Severely Impaired Special Needs Kids - Part 3

As professionals working with children that have severe disabilities we have found that there are ways to play with common toys and connect with your loved one and motivates them to move and do things you may not have seen before!  These short clips reveal just that - simple techniques of how to make "play time" with your child more fun for both them and you.
This video is embedded through YouTube.

Playing with Severely Impaired Special Needs Kids - 4

As professionals working with children that have severe disabilities we have found that there are ways to play with common toys and connect with your loved one and motivates them to move and do things you may not have seen before!  These short clips reveal just that - simple techniques of how to make "play time" with your child more fun for both them and you.  
This video is embedded through YouTube.

Friday, December 10, 2010

One Handed Kitchen Container

As someone with cerebral palsy on the left side of my body, I have found that the tasks that prove the most challenging for me are in the kitchen.  One simple product I found that made cooking less frustrating for me was the OXO "POP Container"

This way I do not have to struggle at all to open a container for my sugar, flour, or anything.  The frustration it saves me is well worth the price.  I am excited to get more for Christmas!
Features & Benefits
  • Airtight seal with the press of a button
  • Modular stacking system for optimal countertop and pantry organization
  • Set includes: 1 4.0-quart Container, ideal for a 5 lb bag of flour or sugar. 1 2.5-quart Container, ideal size for rice, pasta, breadsticks. 1 2.4-quart Container, ideal for cookies, crackers. 1 2.1-quart Container, ideal for spaghetti, linguini, lasagna. 2 0.9-quart Containers, ideal for brown sugar, nuts. 2 0.5-quart Containers, ideal for tea bags, candy, sugar cubes. 2 0.3-quart Containers, ideal for spices, dried chilies, bouillon.
  • Square shapes maximize space-efficiency
  • Container corners allow for easy pouring
  • Pop-up button serves as handle to lift off lid
  • Also great for use in the garage, sewing room, play room and more
  • Silicone gasket is dishwasher safe, hand wash other parts
  • BPA-free

  

Adaptive Technologies with RJ Cooper

RJ Cooper is a guru in the field of adaptive technology and the severely impaired, autistically impaired population.  RJ has been developing adaptive technology solutions for years and his expertise in connecting with and drawing out even the severely impaired person is phenomenal.


This coming Monday and Tuesday, December 13th and 14th, RJ Howard will be in Cass County, MI to present adaptive technology that has been developed specifically for people with special needs.  The conference is free and truly worthwhile.  The flyer is below:



               Lewis Cass Intermediate School District

61682 Dailey Road
                                                     Providing Services Today For A Better Tomorrow         Cassopolis, Michigan  49031-9648
Fax (269) 445-2981
Brookside Fax (269) 445-6253
North Pointe Fax (269) 782-7727
Web: //www.lewiscassisd.or


Lewis Cass ISD
Presents
Adaptive Technologies with RJ Cooper

*Researcher and developer for persons with disabilities since 1984
*Authored many software titles and developed several hardware adaptations
*Expertise ranges from mild to severe/profound developmental delays and learning and physical disabilities
*Lectures regularly at Adaptive Technology Conferences
*Author of column “Ask RJ” which appears in publication “Closing the Gap”


Monday, December 13:   A unique presentation will consist of his working with a variety of students with disabilities to help develop learning solutions for living.  This presentation will be held at North Pointe Center, 704 N. Orchard, Dowagiac, MI 49047 from 9:00 am to 3:00 pm. 

Tuesday, December 14:  RJ will share his expertise and provide training in a computer lab with professionals and interested family members in software programs geared toward special learners.  This presentation will take place in the computer lab at North Pointe Center from 9:00 am to 3:00 pm.

Visit RJ’s website at www.rjcooper.com.

This presentation welcomes parents and professionals.  Lunch and refreshments will be provided both days.  Computers and space are limited, so please reserve your name as soon as possible. 


***FREE***


Call or email to Register: Diane Schultz (269) 445-6250 dschultz@lewiscassisd.org.
 












Katie Bekett - Independent Living


It started with a 3-year-old girl in a hospital and the president who was angered when he learned that federal rules prevented her from going home.
By what sense do we have a regulation in government that says we'll pay $6,000 a month to keep someone in a hospital that we believe would be better off at home, but the family cannot afford one-sixth that amount to keep them at home?
The president was Ronald Reagan. The girl, Katie Beckett, had contracted viral encephalitis, a brain infection, when she was just five months old. She'd gone into a coma for ten days, and when she came out she suffered a paralysis that left her unable to breathe without the help of a ventilator most of the day.
After more than two years living in St. Luke's Methodist Hospital in Cedar Rapids, Iowa, the family reached the limit of what its private insurance would pay for Katie's care. Medicaid, the state and federal health insurance for the needy, started picking up the cost of that expensive breathing machine and other care.
But Medicaid would pay only as long as the little girl lived in the pediatric intensive care unit at the hospital.
Beckett's parents, Julie and Mark, said they wanted their daughter at home. The girl's doctors agreed, saying she needed to grow up in a more normal environment than a hospital room.

Independent Living - Alternative Options

The following is an article from NPR:
What do you think -  Should a 22 year old be living in a Nursing Home???
After a year in a nursing home, Mathew Harp got his wish and moved out. He now lives in an Atlanta neighborhood with a woman who provides his attendant care.


Click "read more" to read article

Mental Retardation

Saying that someone is "mentally retarded" has many connotations to it, and is no longer simply a "medical diagnosis".  Instead, it is now encouraged to use the following words

  • Intellectual Disability
  • Cognitive Disability
  • Learning Disability
  • Developmental Delay
  • Developmental Disability

Also, please use the phrase by putting the person first.... so as to not label them by a diagnosis.  Example: "Instead of saying 'the autistic child' rather say, "the child who has autism".


Animal Therapy and the Developmentally Disabled


"Though equine assisted therapy is increasing in popularity, there are other types of animal assisted therapy that have been found effective as well.
Click "read more" to find out what else is out there...

Thursday, December 9, 2010

Standing Wheelchair

A standing wheelchair

Yesterday we put a very energetic young man with severe cognitive and physical developmental disabilities in a standing wheelchair.  As soon as the breaking mechanisms were loosed, this young gentleman sprung to his feet – literally!  A big smile spread across his face with the realization that he could stand up himself for the first time!

How does the standing wheelchair work?
Click "read more" to find out

Tuesday, December 7, 2010

Home Help Services for the developmentally disabled


HOME HELP SERVICES
Are you concerned about taking care of yourself and continuing to live in your own home?



Are you eligible for Medicaid?
This program may let you hire someone to help you with your essential daily activities.

Brittle Bone Syndrome - Definition & Testimonies

Brittle bone disease is more commonly known as osteogenesis imperfecta (OI). It is a rare, usually inherited disorder that causes bones to break easily due to the body’s low production of collagen. There are six different types of brittle bone disease. The last two types, Type V and Type VI have been recently identified, and many articles refer to only four different types. The type of brittle bone disease indicates the degree to which the condition may impact one’s life. While some people are severely affected by brittle bone disease, others are able to live a relatively normal life.
Low levels of collagen characterize Type I brittle bone disease. This type is the most frequently occurring and the least severe. Bones are likely to break easily before the onset of puberty. As well, those with Type I are prone to scoliosis, extreme curvature of the spine, and may need to wear a brace as teenagers to correct the curve.

Monday, December 6, 2010

Computer Accessibility

Computers and technology has opened up a whole new world for people with disabilities.










The key is: to figure out how to set up the computer to allow our loved one access. I found this website that offers education on how to make different operating systems accessible to people with special needs.  

This page discusses four topics:

1) Computer & Software developers

2) Computer Programs

3) Software Toolkits

4) Computer Access Resources.

What resources have you found???  The technology changes so quickly.... let's work together to keep up!  :)

   

Wednesday, December 1, 2010

How to fix/maintain the tilt'n space on a Safari stroller or wheelchair

This video is embedded through Youtube.

Tuesday, November 30, 2010

Down's Syndrome & Occupational Therapy

When your child is an infant, your immediate concerns relate to his health and growth, development of the basic motor milestones, social interaction with you and others, interest in things going on around him, and early speech sounds and responses. At this stage an OT may become involved to:

- assist with oral-motor feeding problems (this can also be addressed by Speech Pathologists). Due to hypotonia and weakness of the muscles of the cheeks, tongue and lips, feeding is difficult for some infants with Down syndrome. OTs suggest positioning and feeding techniques, and can be involved in doing feeding studies, if necessary.
                 

What is CP?

Diagnosis of Cerebral Palsy

Cerebral Palsy (CP) simply means that there has been some injury to the brain during development which has resulted in difficulty transmitting the necessary impulses from the brain to the muscles for coordinated movement.

Many children born prematurely will develop some movement difficulties related to early neurological injury.  These impairments emerge slowly over time and are typically not evident during the newborn period.  Most mild motor abnormalities noticeable during the first few months of life will improve and may completely resolve with time.  When motor impairment persists, a diagnosis of cerebral palsy may be considered. 

 About 10% of children born at birth weights of less than 1000 grams will eventually receive a diagnosis of cerebral palsy (McCarton, et. al, 1996; O'Shea, et. al., 1998), a permanent condition.  

Diagnosing cerebral palsy in children born prematurely is often a difficult process which requires observing the child's development over time.

Wednesday, November 24, 2010

Active Learning & the Developmentally Disabled

A Warning:

"If you help him instead of requiring him to do it, he will forget to do it, and we will have to have to start training him in that skill again."

Do we do too much in helping our loved ones who are handicapped in one way or the other?  Are we doing too little?  Lilli Neilson, a sister to several blind and disabled children has developed a theory called "active learning" in how to educate the child with developmental delays about the world around them.




The Philosophy:

ADA quote

"(The ADA will).... ensure that people with disabilities are given the basic guarantees...(of) freedom of choice, control of their lives, the opportunity to blend fully and equally into the...mosaic of the American mainstream"    President George Bush.  July 26, 1990

Tuesday, November 23, 2010

8 Reasons to Use a Ceiling Lift

  1. Positioning much easier with ceiling lift than floor mounted lift.
  2. Floor mounted lifts have troubles with carpets and fitting under a bed frame.
  3. Ceiling lifts do not have these two major concerns.
  4. If you are planning to use a portable ceiling lift then the weight of the lifting unit will be a key point in selecting the correct lift.
  5. Manual ceiling lifts are used where a care giver slides client along rail.
  6. Motorized ceiling lifts allows independent transfers by end user.
  7. Ceiling lifts can be used with walking sling.
  8. Track can go through doorway by suspending track below header or by cutting into door header to accommodate track.
information found at: http://www.silvercross.com/ceilinglifts.html

   

Monday, November 22, 2010

Tuberous Sclerosis from Mayo Clinic

What is it?
Tuberous sclerosis is a rare genetic disease that causes noncancerous (benign) tumors to grow in many parts of the body, such as the skin, brain and kidneys. The signs and symptoms of tuberous sclerosis vary — from patches of light-colored skin to seizures or behavior problems — depending on where the tumors develop.
In most cases, tuberous sclerosis is detected during infancy or childhood. Some people with tuberous sclerosis have such mild signs and symptoms that the condition goes undiagnosed. Others experience serious disabilities.
There's no cure for tuberous sclerosis, and there's no way to predict the course or severity of the disease. With appropriate treatment, however, many people who have tuberous sclerosis lead full, productive lives.

Symptoms?

Friday, November 19, 2010

Course of Rett's Syndrome

Rett Syndrome is a neurological syndrome that effects girls almost exclusively, and may be misdiagnosed as autism or cerebral palsy


  The course of Rett syndrome, including the age of onset and the severity of symptoms, varies from child to child. Before the symptoms begin, however, the child generally appears to grow and develop normally, although there are often subtle abnormalities even in early infancy, such as loss of muscle tone (hypotonia), difficulty feeding, and jerkiness in limb movements. Then, gradually, mental and physical symptoms appear. As the syndrome progresses, the child loses purposeful use of her hands and the ability to speak. Other early symptoms may include problems crawling or walking and diminished eye contact. The loss of functional use of the hands is followed by compulsive hand movements such as wringing and washing. The onset of this period of regression is sometimes sudden


Children with Rett syndrome often exhibit autistic-like behaviors in the early stages. Other symptoms may include walking on the toes, sleep problems, a wide-based gait, teeth grinding and difficulty chewing, slowed growth, seizures, cognitive disabilities, and breathing difficulties while awake such as hyperventilation, apnea (breath holding), and air swallowing.



What are the stages of the disorder?




Scientists generally describe four stages of Rett syndrome.

Signs of Down's Syndrome






Down Syndrome Facts 
The incidence of a child being born with Down syndrome increases with maternal age. Even though this is true, almost 80% of children with Down syndrome are born to mothers who are under the age of 35. The reason for this is that most women give birth before the age of 35.

Down Syndrome Symptoms


General characteristics

Most children with Down syndrome have some of the following physical traits:
  • Short stature. A child often grows slowly and, as an adult, is shorter than average.
  • Weak muscles (hypotonia) throughout the body. A child may seem to have less strength than other children of the same age. Weak abdominal muscles also make the stomach stick out.
  • A short, wide neck with excess fat and skin. Usually, this trait is less obvious as the child gets older.
  • Short, stocky arms and legs. Some children also have a wide space between the big toe and second toe.
  • A single crease across the center of the palms of the hands. This is called a transverse palmar crease or simian line.

Facial features

Down syndrome often results in distinct facial features, such as:
  • Small, low-set ears.
  • Irregularly shaped mouth and tongue. The child's tongue may partly stick out. The roof of the mouth (palate) may be narrow and high with a downward curve.
  • A nasal bridge that looks pushed in. The nasal bridge is the flat area between the nose and eyes.
  • Tissue buildup on the colored part of the eye (iris). These areas are known as Brushfield's spots and do not affect the child's vision.
  • Irregular and crooked teeth that often come in late and not in the normal sequence.
(found at http://children.webmd.com/tc/down-syndrome-symptoms)

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