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.


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)

Friday, November 12, 2010

Fixing Covaid Cruiser-Handicap Stroller Brakes

This video is embedded through Youtube.

Behavioral techniques for difficult children

Sometimes it seems like no matter what you do, he never listens.  So, what do the experts say?  What are the tricks to handle an ADHD child?  Is there a formula, a magic ingredient? 

Although there is no “one size fits all” technique to curb poor behaviors… there are some alternatives to try - - - let me know which techniques you’ve tried… which ones work and which ones don’t???


Tuesday, November 9, 2010

Top 10 Toys for Kids with Special Needs

And Now, Our Creature Presentation - Kids with Down syndrome can have difficulty with fine motor skills, so games and puzzles with just a few large pieces to work with are often a hit. Especially good are games like this Monster Toss -- its level of difficulty can be adjusted to custom-fit the child and her developmental stage. Try starting out close, and then slowly moving farther back!

Monday, November 8, 2010

Toys for special needs kids! It's almost Christmas

Finding the right toy for your child who has a disability can be like searching for a needle in a haystack right?

Here is a website I found that has a list of toys for kids who have special needs, broken down into categories of their abilities.

Visit these Shopping sites for kids with special needs

I thought it was pretty cool :)

Another cool thing I found was a blog whose author works at a toy shop for kids that have unique interests and needs. Click here to visit her blog and read about the "12 toys for Christmas"

Come back to visit as we continue to discover cool toys for your kids.

What other websites have you found to be helpful???? Santa's elves are wondering..... :)

Friday, November 5, 2010

Kabuki Syndrome Camper... A Place to Live??

What are the living options available for a special needs adult with Kabuki syndrome, who is medically fragile, has behavioral issues and is as capable of taking care of himself as a 5-year old?

Is adult foster care or living at home the only options for people with special needs. What happens when neither of these options is acceptable?
Kabuki Syndrome Mom and Dad were faced with these issues when their 18-year old, Nathan with Kabuki syndrome felt the need to be independent.

Kabuki Syndrome Camper...TRANSITIONS

For Nathan the transition from his family home to ‘his own place’ was easy, nothing to it. Nathan needed two things, his baby monitor and a dog. First he grabbed his baby monitor and put it next to the bed then told his mother that ‘every home needs a dog.’ Kabuki Syndrome Mom put a basket of stuffed dogs in the camper and the dog requirement was fulfilled, home sweet home to Nathan. What more could he need?

The transition to the camper was a bit more difficult for Kabuki Syndrome Mom. Nathan was unable to manage his medications, grooming, or schedule and what about at night, how would that go? Nathan had never slept more than a few hours a night, the rest of the night he was always up and about.

Kabuki Camper...Meet Kabuki Syndrome Mom & Family

The Family

Kabuki Syndrome Mom

Having a place for Nathan to go when he is aggressive has definitely been a benefit to having the camper. Nathan’s grandfather states, ‘we were hoping the camper would take some of the stress off.’ In many ways the camper has taken stress off Kabuki Syndrome Mom.

Kabuki Syndrome Mom reports that Nathan has never really slept at night and was often up doing things in the night. One thing that really surprised her was when Nathan moved into the camper she was finally able to have a good night’s sleep. ‘I didn’t realized how sleep deprived I was” says Kabuki Syndrome Mom, “it had been so many years since I had slept through the night without interruption.’

The camper did increase Kabuki Syndrome Mom’s workload, having extra shopping, extra organizing and extra cleaning, but so far she’s managing.

Nathan has been talking about his camper for months, just saying things like ‘I like my camper’, which is how word has spread. When we went out to see Nathan’s camper and talk to his mother, Nathan invited us into his camper and was very proud to show us around. After we had been in his camper for 10 minutes or so Nathan told us we could go.

We went into the house to talk to Kabuki Syndrome Mom and learn more about how things worked. Nathan came in and sat with us during our conversation. When asked why he wanted a new house his response was, ‘Because I did.’

Community Living Services
Kabuki Syndrome Mom & Dad have always hoped that Nathan’s brothers would not have to take care of him. Recently Kabuki Syndrome Momheard about a program called ‘CLS’-Community Living Services that assists adults with disabilities in becoming more independent.

CLS has a respite program with workers that will come to Nathan’s home and work with him on independent living skills and take him on community outings. CLS will be one more support system for Nathan and another step towards independence and building a fulfilling life.

How about you?
Does anyone have any experience with moving someone with a disability into their own ‘place’? Does anyone have any stories of what works or doesn’t work to make the transition smooth? Does anyone have any thoughts to offer Kabuki Syndrome Mom & Dad? Inquiring minds want to know…

Columbia VS Otter Reclining Bath Chairs and Mobility Bases

Bath chair rating Columbia vs Otter reclining bath chair with mobile base

Otter chair & mobility base                      Columbia chair & mobility base

We have used various brands of bath chairs… which brands work and which ones don’t. It’s a lot of $ for trial and error right?

Columbia PVC Reclining Bath Chair and Mobile Base

The Columbia bath chair and mobile base was significantly more expensive than the Otter bath chair and base. The Columbia has blue mesh attached to a PVC frame that does not adjust but remains in a reclined position. Two of three Columbia bath chairs broke after a couple of years when used with adults and heavy use, one was repairable with PVC from the local hardware store.

The Columbia base worked beautifully, always rolling smoothly and easy to steer even after a few years of chlorine exposure.

Otter Reclining Bath Chair and Mobile Base

The Otter reclining bath chair and mobile base were less expensive then the Columbia system. The Otter bath chair has green mesh attached to a metal frame. The Otter bath chair was a favorite with completely adjustable back and seat positions and conveniently placed release levers that have held up over time.

The Otter mobile base on the other hand was a complete dud. From the get go it has been a struggle to control and difficult to push especially under the weight of an adult. The casters are most definitely the difference. The casters on the Otter mobile base are smaller than the Columbia base. As time has passed the casters have become more and more difficult to roll.

So what's the rating?

Columbia reclining bath chair: Not durable, limited adjustments available.- 2 stars out of 5
Columbia mobile base: Durable a true easy roller.- 5 stars out of 5

Otter reclining bath chair: Durable metal frame, easily adjustable with conveniently located.
5 stars out of 5
Otter mobile base: Durable but difficult to roll and steer.- 1 star out of 5 Taking care of someone with a disability is hard enough, this mobile base just makes life even more difficult.

Have you had a similar discovery? Inquisitive minds want to know…. It’s time to look out for each other

Wednesday, November 3, 2010

Living with Down's...real life story

Deb heard about this blog and what we were trying to do to connect, inform, and encourage parents in the area of options available to people with multiple/severe disabilities.  Deb sat down with me to share what many would call a “success story” about the life of her 36-year-old daughter, Jenny, who has grown up with down’s syndrome.

Deb advocated, “There is so much more available now for these kinds of kids than there was 36 years ago.  As a parent, it’s up to you to find those things out.  What kind of life do you want for your child?” Deb shared about what it was like to have your first child be diagnosed with Down’s Syndrome; the anxiety, disappointment, joys, fears, and determination one must have to overcome each obstacle.  She and a group of mom’s with children that had special needs got together and began writing letters to the state asking for them to begin programs, schools, and services for their kids. 

For this family, it took them a while to learn that “Jenny wants to do the same things we want to do”.  Jenny attends camps in the summer where she horseback rides, swims, and meets new people (all favorite hobbies for Jenny).  It may be time to change our definition of “independence”.  So, what does that look like at home?

Growing Up

When Jenny reached her 30’s and attended her brother’s wedding, something inside of her changed.  All of the sudden the woman inside her bubbled up, and the desire to “grow up” emerged.  Now, Jenny hopes to be married someday.  To prepare her for her future, her parents have transformed their walk out basement to a master suite.  It has Jenny’s very own bedroom and bathroom, living room, TV and movies, laundry, but no kitchen.  Every afternoon when Jenny comes home from working at Gateway (an employment agency for people with special needs), she vacuums and cleans her apartment, watches some TV, and when her mom gets home from work she will come upstairs to have a cup of tea and visit before dinner.  When Dad comes home, all three get to work in the kitchen for a collaborated effort in making a meal!  The only problem with this set up, is when Mom and Dad are ready to go out on a date.  They will order Jenny dinner and a movie… but she will sneak upstairs and eat food out of the refrigerator!

Caroline Bartlett Crane

So, when did we begin thinking about universal design?

In 1924, a woman named Caroline Bartlett Crane won a national competition to build a model home for America.  This competition came out of the desperate need America had, with 45% of the population not being able to afford a home. 

Why does this affect us, you ask?  Good question.

Caroline wrote a book describing the model home she designed and built to give us insight as to why she did things the way she did.  This book was highly esteemed by many in her time…. And may have some things for us to learn as well…

Her house was conceptualized around the mother and her baby.  She designed each room so that each person in the household had personal space, for example, in the main living space, every person had a place they could sit and call their own, as well as a bedroom they would be able to escape too.  However, Crane does not believe in WASTED SPACE… are bigger rooms always better?

Take the kitchen for example, she says, “The kitchen, notwithstanding all domestic metamorphoses’, still remains the Hub of the House”.  Crane recognized that a large portion of a mother’s day is spent in the kitchen.  Therefore she explains how the kitchen needs natural light for the room.  That one ceiling light is not good so as to make one work in their own shadow, but that two lights are necessary.  She designed the kitchen thinking about her every day.  She tells you that above the sink, suspended on hooks, are the various things commonly needed- soap, vegetable brush, metal dish cloth, scissors etc. This is not the place for the towels, they are in one of the drawers to the right.

Now… I know that you wouldn’t read her book and build a house to scale of her recommendations.  What she did though in the designing process, is what is crucial to us today.

Think about your day… you’re going out and coming in. Do you have so much counter space that it accumulates piles and then there is no room for work?  Is the play area for your children have a place for you to be productive along with them?  When you are cooking, do you have everything you need set up for you?

Her planning utilized every space she had for a greater purpose.  When you live or work with someone that has a disability, it is important to have a plan.  A plan for safety, a place to call your own (and their own too!). 

An excerpt from her book:

“A frequent question asked of our kitchen hostess was, ‘Where is the broom closet?’ To which the hostess would reply, ‘You noticed the one in the living room for broom, carpet sweeper, dust mop, and vacuum cleaner? There’s no need for one here.  The broom hangs right on the inside of this door to the basement stairs.’
‘But where is the built in ironing board?’
‘It isn’t built in. We think it is better by the laundry.”
‘But I thought a built-in ironing board was the thing.’
“Nothing is ‘the thing’ unless it serves a useful purpose, we think; especially nothing as expensive as a needless cupboard”

The way in which we design our homes says a lot about who we are.  What do you think?  Did Caroline catch on to something here?  What is more important, the quality or quantity of space in your home? 

To see the virtual tour of  “Everyman’s House” or read Caroline’s biography click here