Setting the Table becomes a Moment to Remember

As a society we often get so caught up in the hustle and bustle of everyday life that we forget to take time to stop and notice the little things in life. Since January, I’ve been making an effort to notice the small moments, enjoy them, and live in the moment. 


Sunday night, as we were getting ready to sit down for dinner, I got out plates and silverware and set them on the table. I walked back to the counter for something else and when I turned around I noticed Noah at the table. He was setting the table! 


I was so proud to see him doing that on his own for the very first time. It was a moment. My heart smiled as I watched my little boy in his wheelchair, setting the table. I breathed in the moment and etched it into my memory. I never want to take these moments for granted. Because of  his special needs, because of cerebral palsy and autism, I’m aware – so very aware – of these little moments and for my boy they are actually big moments. 


(This post is a part of the CP Connection. Click links below for more info.) 

Goodbye Corner Chair

Years ago when Noah was about 2, his physical and occupational therapists decided he needed a corner chair. I’d never heard of a corner chair before but his therapists explained that it would give him maximum support while sitting and that it would also help him with head control and the goal was that through sitting in the corner chair, eventually he’d be able to sit independently without the corner chair.

They brought me a medical equipment catalog to show me pictures of corner chairs. This was our very first experience with ordering medical equipment and I remember feeling so emotionally unprepared. I got teary eyed as I looked at the corner chairs. They were so sterile and clinical looking. The therapist consoled me by saying we could paint it, decorate it, and make it cheerier and less clinical.

When it arrived, there were a few more tears as it looked just as bad in person as it did in that catalog. Some may think this is vain or something silly to shed a couple of tears over but when you are thinking of your child’s life and the things you’ll buy for him turn you are not expecting to pick out things from a medical catalog and you realize that your child's life is turning out to be completely different than you imagined then sometimes you just have to take a minute and acknowledge that, grieve it, and then move forward.

My Mom and I painted the corner chair a bright royal blue. Then my Mom painted different Sesame Street characters in automobiles on the tray (which matched the wall paper border in Noah’s room at the time). It turned out really cute.

Recently, J picked up some of Noah’s old medical equipment that he had outgrown that was stored at my parents’ house. We gave them to the physical therapy department at Noah’s school so that other children can benefit from them. That corner chair was one of the things we gave to them and I found myself a little sad to say goodbye to it. Ironic isn't it? Something I loathed at first turned into a sweet memory for me.

But I know another special boy or girl will use that corner chair and smile at Big Bird, Bert, Ernie, Elmo, and Cookie.

I apologize for the terrible cell phone pic but check out the amazing job my Mom did on the tray!

Song for a Child with Cerebral Palsy

March is National Cerebral Palsy Awareness Month so I'll be sharing some things related to Cerebral Palsy through out the month.

I recently came across That Smile, a precious song written by 8 year old Cassidy Matthews for her sister Elise who has Cerebral Palsy. Such sweet lyrics for an 8 year old!

Lyrics:

1st verse:
What would you do
If you weren't like anyone else?
If the easy things
Weren't so easy?
What if it took you longer to do it?
You might feel sad and lonely.
You may just want to sit and cry.
How do you move above all that? 

chorus:
What do you do?
What could you do?
You smile that smile
That perfect smile.
You show them all
That lifes worth living
And not to feel so sorry.
You smile that smile,
That perfect smile.
The one that melts us as your giving.
And leaves the heart
Filled with joy,
Why can't we all live that way? 

2nd verse:
What if the sounds from your mouth came out different?
What if they couldn't
Understand you?
What if they treated you
Not like the others?
You might feel down
And not so special.
You may want to fight
Or get frustrated,
But what would that do?
What would that fix? 

chorus again 

last verse:
What if each small step
Was celebrated?
If your world was at you fingertips/
What if your beautiful
Face could change us?
You might just feel happy and proud.
You may want to show your
Light to the people.
That's what we need
In a world llike this! 

Chorus again 

Oh let us all, be that way-ay!

Spread the Word to End the R Word

It's not acceptable to use the "R" word nowadays. I know people still do it, though, but it's demeaning. Tomorrow (3/7/12) is the official day of awareness to Spread the Word to End the R Word. Can you commit to not use the R word anymore? If so, take a minute to sign the pledge and then spread the word and ask others to do the same.

Noah and I thank you! Let us know if you sign the pledge!

A Few More CP Facts

This will be the last of the "Cerebral Palsy Awareness Posts" for March. I found some interesting statistics I thought I'd share. And since you are here reading my blog and I'm doing this because of my Noah, I wrote about Noah after the statistics if they were at all relevant to him. 

• There are more boys born with Cerebral Palsy (CP) than girls (for every 100 girls there are 135 boys).
• About one-half of children with CP are born prematurely. (Noah was a preemie.)
• More than one-half of children with CP have hemiplegia (one side of the body is paralyzed, as typically seen in adult stroke).
• One in nine people with CP have features of autism. (Noah has borderline autism.)
• One in four people with CP have epileptic seizures. (Noah has epilepsy too.)
• Six out of 10 people with CP have normal or superior intelligence. 
• One in three children with CP cannot walk. (Noah doesn't walk much. He has walked in the past some with maximum assistance in a walker but it's very difficult and tiring for him.)
• One in four children with CP cannot feed or dress themselves. (Noah can not dress himself but he can feed himself table foods like chicken nuggets or crackers but needs help with things that require a spoon like pudding.) 

Source

And even though March is over, I'll continue to share relevant information regarding Cerebral Palsy as I come across it because I feel educating others is a positive step in the right direction of my son and others like him being fully accepted by society. 

What Do You Call Someone with a Disability?

As the mother of a child with a disability, I notice when people stare at my son, Noah. I notice the whispers. I've heard children call him names. It breaks my heart. Sometimes I think they act out of ignorance. They just don't know what is wrong with him. They don't know how to interact with him. They don't know what you call someone with a disability. I've heard him called retarded, deaf, dumb, stupid - just to name a few!


In the past, people with disabilities were not seen as having much to contribute to society and were often times institutionalized. Welcome to the year 2011! Now, the disabled live and work amongst us. There are 49 million people living in the US who have some form of a disability. (That's 1 out of 5, folks!) So obviously the stereotypes are myths, because these people do have a future and they do have feelings!


They are not retarded, dumb, cripple, mute, or defective. They are people just like you and me. They are just different!


So, you ask what do you call an individual with a disability?? You call them women, men, boys, girls, students, your teacher, doctor, neighbor, friend, athletes, brunettes, blondes,church members, leaders, your Mom or Dad, your sister or brother, or and any other word you would call any other person.


I call him Noah.


(Note: I actually wrote this years ago but thought I'd share it in honor of CP Awareness Month.)

Cerebral Palsy Awareness Month

Did you that March is Cerebral Palsy Awareness Month? In honor of this, I'll be doing a couple of posts this month focusing on Cerebral Palsy. People tell me all the time that they don't know very much about it so here is your chance to learn a little bit about it! 


First up, let’s define Cerebral Palsy.


To be very brief and sum it up in one sentence; Cerebral Palsy (which I am going to refer to as CP) is a condition caused by injury to the brain resulting in loss of oxygen right before, during, or after birth. There are varying degrees of CP from mild to moderate to severe. 


Now some facts about CP......

• Approximately 765,000 children and adults in the US manifest one or more of the signs of CP. 
• 8,000 – 10,000 children are diagnosed with CP each year. 
• CP is the second most common neurological impairment in childhood.
• Currently, there is no cure for CP but treatments and therapies (such as physical therapy, occupational therapy, speech therapy, communication devices, medications, braces, etc.) can be used to manage CP and help a child reach his/her full potential. 
• A number of other medical conditions are associated with CP such as mental impairment, seizures or epilepsy, and impaired vision or hearing. 
• 45 % of all children with CP develop epilepsy. (Noah has epilepsy too.)
• The average lifetime cost for a person with cerebral palsy totals nearly $1 million over and above the costs experienced by a person without the disability.
• 20% of children diagnosed with congenital cerebral palsy developed CP due to a brain injury during the birthing process.

Do you have a question about CP? Now's your chance to ask! Simply leave it in a comment or email it to me at coleyscorner(at)gmail(dot)com and I'll do my best to answer it or find the answer in a later post.


Sources:
Cerebral Palsy Source 
United Cerebral Palsy Organization

Noah's PCA

I have been meaning to write about this forever but am just now getting around to it. When we were going through the process of applying for a Personal Care Aide (PCA) I looked and looked for personal experiences with PCAs of other families of special needs kiddos but couldn't find any so my hope is that if anyone else out there is going through the process of approval or thinking about applying they might find this post and find it helpful. 


For over a year before I finally applied, people were urging us to apply for a PCA for Noah. I felt it wasn't necessary at that time until his surgery was coming up. I decided to go ahead and apply back in April of 2010 and finally in Spetember Noah was approved to get 15 hours of a PCA in our home.


I'm not gonna lie - it hasn't been exactly easy or comfortable for me, especially in the beginning. I had a very hard time letting them do anything. At first, I let them do more housekeeping type duties (sweep Noah's room, change his bed, etc) and then I slowly worked up to letting them do more with Noah. But I just felt bad/guilty for needing them. I felt like I shouldn't need them here, like other mothers don't need help and it was bad that I did but then I quickly had to remind myself other mothers don't have 14 year olds who don't walk, talk, and who need as much assistance with basic daily things like dressing and eating as Noah does. It's not a "normal" situation and I have to realize and recognize that to be ok with it. 


Over time though, I have gotten more comfortable with it. So much to the point that I now feel comfortable leaving Noah alone with them while J and I run to eat or run to the store or something like that. 


We have a PCA come in the evening, right around the time Noah usually wakes up from a nap. She is able to help him with eating while I cook dinner, read to him, give him a bath, etc. We don't have her here every day but it is nice at times on the day she is here to not have to try and juggle dealing with Noah while I cook dinner or get his bath in before J has to leave for work. 


We did initially have a couple of issues with some of the PCAs they were sending. But the one we have currently (aside from her issues of being late, which we are working on) seems pretty good with Noah. She was actually sent as a fill in but when I learned she had experience with kids with CP, I specifically requested her. 


So, I'll keep y'all updated on how it is going. 

An “All Star” with CP

On Tuesday night, we were all watching the beginning of the All Star game. Before the game started, the announcers announced that People Magazine and the MLB had teamed up and were honoring and recognizing thirty people (out of thousands across the nation) as “All Stars Among Us.” One person representing each team and each person being honored somehow makes a difference in the lives of others in his or her community. 

We got excited when we noticed that one of the “All Star People” being featured was in a wheelchair. We listened and watched as we learned a little bit more about this special boy. Tears filled my eyes as I learned that this seventeen year old young man named Gary Lynn,  who was in a wheelchair and in many ways resembled my Noah, had cerebral palsy and had started a foundation of his very own to raise money for research and education for cerebral palsy. Gary is from Houston, Texas and was representing the Houston Astro’s. He’s raised over $12,000 for CP research to date. 

When Noah first saw Gary in his wheelchair, he got excited, as he often does when he sees people in wheelchairs. He identifies with them and I think he automatically feels a sense of kinship with them. It’s something big that connects them. So, he did get excited when he first noticed the wheelchair. Once J and I figured out what it was all about, J pressed paused and we stopped for a minute to explain to Noah. I wanted to be sure that he understood that the people that were walking (or wheeling in Gary’s case) onto the field were being honored. I wanted to be sure that he understood Gary had cerebral palsy too. I knew it was a good teaching moment, an opportunity to show Noah that nothing, not even cerebral palsy, can stop or define him.  It was a good moment, very neat to watch and I felt so proud of a young man I don’t even know. Be sure and check out The Gary Lynn Foundation. 

Cerebral Palsy Information

I've noticed lately that people have been coming to this blog using the search engine tag "children with cerebral palsy" or something to that effect. I thought it would be good to create a page here for those people so that you can easily find out information about cerebral palsy as well as how it affects my son.

But first a little disclaimer… I am attempting to put what I have learned about cerebral palsy over the years into laymen’s terms but please keep in mind that I am not a doctor, a nurse, or a trained professional who deals with cerebral palsy. I’m simply a mother wanting to educate others about her son's condition. For more information on cerebral palsy, please see the "CP Links" section at the bottom of this page.

What is Cerebral Palsy? (I will refer to Cerebral Palsy as CP from now on.) CP is a condition caused by injury to the brain resulting in loss of oxygen right before, during, or after birth. More and more often, CP is being linked to negligence on the medical professionals part. It can often be very common in premature babies as well.

What are the effects of CP? CP affects each person differently. It can affect their speech, motor control, ability to walk, and the ability to do everyday things - even eating! It can affect their whole body or it can affect just certain aspects of their functioning.

How many children have CP? According to UCP, about 8,000 babies/children are diagnosed with CP each year.

Does the condition get worse over time? No! CP is considered a "static" condition - meaning it does not get worse. With therapy and hard work, people with CP can overcome their obstacles.

Since each child with CP is different, I thought I would take a moment and walk you through how CP has affected Noah. Eager to see the world, Noah arrived 6 weeks early weighing 4 lbs and 12 oz. After I was given the epidural, he lost oxygen which resulted in CP. We did not know he had CP at the time. After an attorney did an investigation as to what caused the CP, I firmly believe that Noah's CP is the result of  my reaction to the epidural and the doctors not responding quick enough to that reaction. 

Noah was a happy baby, but we did begin to notice that he was not on target with some of his milestones. At about 8 months old, a CT scan was done and it was then determined that Noah did have CP. Noah had surgery at Shriner's Children's Hospital in November of 2002 to lengthen his heel cords and to put steel plates in his hips. It was a long process - he was in a cast from the waist down for a month and then in "boot" casts from the knees down for another month. The surgery has helped some and Noah is able to walk short distances in a walker.

Noah's speech is also delayed by CP - although he comprehends and understands so much! He is now communicating with sign language and a communication device. Noah goes to a very good local school for children with special needs. He is in a class room setting, but receives occupational, physical, and speech therapy and learns life skills at school as well. He is doing well in school and enjoys school - especially riding on the school bus!  Noah continues to amaze us with his zest and love of life. Noah is a very happy and loving boy who enjoys making others smile and laugh by doing silly little things. He plays Miracle League baseball (baseball program for children with special needs), loves the Clemson tigers, and enjoys reading and going places.  He is a curious learner and a bit of dare devil at times - especially when it comes to roller coasters.  People have asked me if I wonder what Noah's life would be like if he did not have CP, but that is hard for me to imagine. 


Noah is who he is - CP and all.


Cerebral Palsy Links:

UCP Support Community for Parents of Children with CP


Links to things I have written regarding CP: 
Cerebral Palsy Awareness Month
What Do You Call Someone with a Disability? 
Defining Noah