Special Needs Parents

Don't get me wrong I have respect for most parents of special needs children What they do out of love and compassion is more than I could mentally especially if the child has behavior issues. 

One mother in particular is just ridiculous though. Just by reading her blog I've come to the conclusion her attitude creates a bigger disability for her child.

She never has anything positive to say about her kid's school, therapists, doctors or home care workers. Alot of people bent over backwards to kiss her Ass but yet it's never enough. Regardless of what's going on in her life it's always someone else's fault, never her own. When she fails to follow through with needed services for her child it will be someone else's fault.

Perhaps I'm misunderstood some of what she is trying to share but her negative attitude shines through. But then again this post may appear negative.

My friend has a child with a similar diagnosis but J's was caused by a birth injury and an incompetent medical team. My friend had went into premature labor and J's umbilical tube was wrapped around her neck for too long. By time it became clear there was a problem the damage was done. The Dr did an emergency C-Section to save J which left my friend unable to have another child. 

My friend fought for her daughter and did not neglect  J's needs because it was inconvenient for her.
J attended school until she was 19. She received Speech Therapy at school and Occupational Therapy at home through a home health service. While J attended school my friend worked full time for her State. J has Cerebral Palsy, Autism and Mental Retardation.

Since "finishing" school J goes to a care center a few hours a week for socialization and it provides respite for my friend. J is included in almost everything her family does. And she's never blamed for her family not doing something. Or used as an excuse not to participate in life.

J will never walk, communicate, feed herself or even turn over by herself. J is a sweetheart that gives my friend joy.

I know every parent is different and perhaps I'm too judgmental. It just irritates me that the parent is disabling the child and then blaming others for it.

Tis the Season

To get married.... and divorced in Hollywood. People magazine is full of upcoming stories of future nuptials and babies. Stories of who's wearing a mysterious ring , could they be engaged?  You know the stories.

The most ironic thing is the most successful celebrity marriages don't occur in the limelight. The celebrities successfully seperate their careers from their private lives.  Tom Hanks and Rita Wilson for example have been married 24 years. Tom's career has been phenomenal starring in many movies but he gets little recognition from tabloids or even People magazine because his personal life is far removed from Hollywood. 

Gary Sinese (Forrest Gump's Lt Dan) and his wife have been married 31 years. David Morse (Green Mile) has been married 30 years.

Dolly Parton has been married for 46 years. Dolly is one of music's most recognized icons in the world but she's successfully kept her home life private.

Dolly considers her long marriage her biggest achievement.

And there is several other celebrity marriages just as long but choose to live quietly amongst the shadows. These couples didn't declare their love by jumping on a couch on network TV or televising their relationship and wedding.

One story on people that recently caught my eye is Danny Devito and Rhea Perlman reuniting after being seperated for several months. There was talk of infidelity and the comments on People was surreal.

Many think Rhea was stupid for taking him back. I applaud them working to save their 30 year marriage and 40 year relationship.

In my opinion unless a marriage is irretrievably broken you work to save it.

My prediction for those recently sporting a new engagement ring only half will make it official. And of the couples that make it to the alter some will end in divorce before their 5 year anniversary.

Today I was invited to witness a miracle

Isn't she precious and new. I dubbed our friend's New little one Miss Itty Bitty. She's tiny for full term, just 5lbs 12oz. I held her when she was less than an hour old.

Our friends asked me to come down and be with them during this magical time. So after days of deliberation and nervous misgivings I agreed because Miss Itty Bitty's Daddy has been a friend of ours for 14 years. When we needed anything throughout the years, he's been there. It would of been wrong to turn down a friend especially when he's been there for us repeatedly. I just dreaded traveling.

So off to Labor and Delivery we went, took an hour to get there and another 20 minutes at the hospital. Of course most units on this floor was locked down like Fort Knox. Visitor passes and locked doors etc.

After getting to the room our friend went for that most important C-Section. Followed by tying some fallopian tubes. Talk about a one stop shop. After sutures and stapling our friends were back with the little one wrapped like a burrito. After playing pass the baby and cuddling her , she went under the warming light.

After the baby and new Momma was settled we had a dilemma. The baby is tiny and newborn clothes would be slightly too big. So we went shopping to find smaller things. Afterwards we ate and went back to check on everyone.

Ten hours and 100 miles traveled, a new life. What a joy to share.

About me

Hi! Welcome to the post about me. Seems strange discussing myself,my own issues and injuries. As a former Nursing Assistant my body took years of physical abuse. The wear and tear left a permanent injury. According to the American with Disabilities Act, I am disabled. According to BWC I am MMI (Medical Maximum Improvement), I am as good as I will ever be and have improved as much as possible. I will never get better, only worse. My FCE with Comp disqualifies me from most jobs and my physician has the final say on where I can work. I did have a Customer Care job for a major cell phone carrier but I had to travel 44 miles one way. The travel became too much even though I was a good Rep.  Now I just follow Dr advice and my FCE.

My life is simple and at times lonely. In a way I'm Lucky for now my disability is not physically visible. I can walk but not miles anymore. I plan to remedy my walking this summer.  Bending is impossible. Turning in bed is a struggle. I can't squat, reach, crawl etc. It can be worse because there's a lot I can do still.

I had xrays during the summer and had no new fractures. I fell 2 weeks later. Typically my left leg is weaker. One of my initial injuries was repaired but the injections in my spine I agreed to at the time to continue working caused my vertebraes to break down.

I am fortunate my husband works to cover our expenses that allows me to stay home but he's gone alot.

My life isn't bad, it could be worse. I could be worse.

Chromosome Issue Parents

** If you comment please refrain from using the "R" word or any derogatory phrase.

Developmentally Delayed= DD
Trisomy= T
Down Syndrome= DS

A human cell has 46 chromosomes, 23 from each parent. When a chromosome has triple copies it is called Trisomy.

Down Syndrome has 3 copies in the 21st chromosome. Edwards Syndrome has triple copies in chromosome 18 and Patau Syndrome has triple copies in the 13th. I used T21, T18 and T13 as an example, there is several other disabilities caused by certain chromosomes being tripled. Or when an error occurs during conception and development.

*The degree of disability depends on how many cells is affected.

Some with developmental delays can learn to live independently, work, and drive , while others require 24/7 supervision.

It really depends on the child and intervention given early on.

Early intervention in education and diet can promote independence later on.

**

Years ago I could never understand why one of my friends would get upset when of my neighbors kids was picked up by a schoolbus. The bus had the school's name on the side. It said...

_________ county board of MR DD

She felt the phrase MR DD labeled the kids and adults riding in the bus.
And to make matters worse the bus took the kids to a school that was for kids with DD and MR.

My friend lived in a neighboring state and special needs kids rode a regular bus and attended school with everyone else. Her daughter's disabilities were the result of a birth injury that left her severely disabled.

One thing I noticed with my friend and in several blogs I follow is better nutrition plays a big part in everyday life especially with chromosome issues. A better diet sometimes eliminates some medications, improves behavior and the overall quality of life for the child or adult.

I've read a lot of blogs written by remarkable mothers and fathers. Even though they have good relationships with Drs and other professionals, they are the child's first line of support in all aspects of life. From dietary needs, therapy, exercise and medical, the parents push. They don't focus on what their children can't do but encourage growth.

Ummm just another random blog

Tabloids, Paparazzi and People magazine

Years ago I stopped buying tabloids after the untimely death of Princess Diana. I think the paparazzi contributed to her death and still feel to this day if we continue to buy the tabloids the invasion of privacy will continue. One good thing that came out of her life and the treatment from the press is that Prince William and Prince Harry could attend school without being hounded by the press. Unless it was an official event the sons of Diana the Princess of Wales and Prince Charles were off limits during their education.

During his time at the University, William met Kate and until they were spotted outside of the University she didn't exists. Their relationship started and got strong out of the public eye.

Quite a difference than Diana faced. Once Diana was identified as the love interest of the Prince every move she made, outfit she wore or word spoken was scrutinized.  Diana, the Princess of Wales changed many people's opinions about the Royal Family. It became more modern and less stuffy.  She cared about issues that was long ignored.

She loved the press when she was promoting a cause and the press loved her way too much. In the end it was a double edged sword, and for Diana it was fatal.

The press now hounds Kate and the Prince, violating their privacy as they did his mum.  Every minute of their days is carefully planned and each outing is carefully planned to ensure their safety.  The only secret they have is the gender of their child. She claims she doesn't know the gender and if she does she's not saying. Good for her. Regardless of her marriage she does deserve privacy. Her marriage created a celebrity status.

Violating the privacy of celebrites is common place in the US too especially around Hollywood and New York. No wonder some chose not to expose their kids to it by raising them elsewhere.  A few celebrities chose to give their kids a normal life and I can't blame them.

So many people criticized Michael Jackson because he hid his kids in disguises when they appeared with him. His kids could of easily blended into the crowd without being noticed, as long as he wasn't there. They could do things a typical kid would do.

It's a horrible thing when young kids are harassed because of who their parents are. The kids aren't the celebrity but their privacy and rights are constantly violated.

It's a shame a celebs child can't go to school without photographers and the press ready to pounce.

The worst thing is People's online magazine are starting to post similar crap as the tabloids. I believe in free press and free speech but there should be bounderies.

The joy of learning

Education has always been a big part of life for most of us, from the moment of birth. And sometimes before birth. I've seen ultrasounds of babies learning to comfort themselves by sucking their thumbs while they are still residing in high humidity.

But for the most part we start learning from the moment of birth when we learn to nurse. The small things we take for granted now ,we had to learn then. We learned to cry when we felt hunger, was cold, wet, or just needed comfort. Before we learned to verbalize our needs with words we cried. We learned to trust our needs would be met.

As we got older we learned to roll over, crawl, walk and verbalize our needs. Each goal met was celebrated, a new lesson learned each day. We learned by imitating our peers, siblings and parents before any formal education.

Our parents and siblings were our first teachers. We learned by example, some earlier than others but we learned. My generation and those before me didn't spend hours playing video games or sitting in front of a tv. We learned to use our imagination during playtime, we played outdoors. I think Mr Rogers and Sesame Street was the only programs I watched before attending School. Even today if something interest me I learn as much about it as I can. Why not?

Each day we learn something new, I know I do. At the age of 27 I had to learn better body mechanics to keep from injuring myself further. Even getting out of bed required me doing things differently. When I was 31 I had back surgery, so I had to learn to do things differently yet again. The new way of doing things is forever implanted in my mind, the old way is a distant memory.

Working in nursing it always amazed me to see our residents relearn the simplest things after strokes or back injuries. Or seeing someone who recently lost their sight learn to function and regain independence again. The mind is a wonderful thing.

I think our willingness to learn plays a big part in rehabilitation and how we cope with the loss of abilities. The loss I faced was minimal compared to other illnesses such as MND, MS, MD and Huntingtons disease. Each of these illnesses is devastating, rehab is important to teach the person how to deal with each new limitation as they occur. When an ability is lost we are taught a new way to do things. Adaptive equipment is sometimes needed.

After my back surgery I was sent home with a lot of adaptive equipment, I didn't have to wait. I had a raised toilet seat, a grabber, items to help with bathing and dressing & a walker which I used for a month. (Nothing like being 31 and needing a walker).

It's a real shame that others have to wait because of national health insurance for the items to make life easier. Or waiting for approval for therapies to cope with each loss by learning new ways of doing things.  I never had to wait for the things I needed or therapy.

Keep striving to overcome limitations by learning something new everyday.....

 

Storm of the Century

It's hard to believe it's been 20 years since the Blizzard of '93. 20 years since I got stuck at work for a few days (and nights). 20 years since I had the honor of working with the most awesome group of people. We pulled together.

Working in a nursing home or any place that has patients in-house, you cannot leave during severe weather. If you leave employment can be terminated. Nobody else could get in because the roads were closed.

It was 30 degrees above freezing when I went to work that morning. By noon it had dropped below freezing and we had a foot of snow on the ground. By 8 we had 22".

It happened again yesterday on the 20th anniversary but thankfully we only got a few inches. When I left for town we were having a few random flakes, 4 miles later it looked like a blizzard. The roads became dangerous. An hour later we had a lot of snow.

Oh the beauty of winter in Appalachia.....