Wednesday, March 28, 2012
Sunday, March 25, 2012
I have had cerebral palsy for 36 years. I was fine until I decided to be born and hospital error landed me with a lack of oxygen. The lack of oxygen damaged my brain that controls my muscles. Cerebral palsy can be frustrating and hard to explain to those who have no idea what it is.
A friend of mine wrote a list of things she liked about having CP. Since today is Cerebral Palsy Awareness day I thought I'd make a list of what I learned from having cerebral palsy.
1. Handicapped parking is more of a necessity because you need extra space for your lift and getting out.
2. Don't assume people will use proper etiquette or any etiquette at all when meeting you. People get silly and act inappropriate because you have CP.
3. If you have a child, the child will most likely be more independent doing things because they don't want to wait.
4. Being modest doesn't always work when you need help dressing, showering, and going to the bathroom.
5. Having to be fed helps with weight loss or weight maintenance.
6. Involuntary movements can make for funny situations.
7. Cuddling isn't always easy when trying to hold a moving target.
8. Don't let anyone take away your dreams. God has a way of opening them up to you if you are open to Him.
9. Making friends can be hard and holding on to them even harder.
10. Go out dancing and see why disability education is imperative.
11. Yes, you can use a smartphone if you are really motivated to do so.
12. Power chair hockey is the most awesome sport in the world.
13. Everyone knows how you feel because CP makes your emotions painfully visible.
14. Be careful what you hold in your bad hand. You might have it for awhile.
15. Yes, you can have children, relationships, and be independent.
16. Life is your playground. Go have fun but come in when it's dark. Sidewalks get bumpy.
Saturday, March 24, 2012
This story reminds me of a friend's daughter. She was denied access to attend field trips with her camp because she used a walker. These people that make ridiculous laws don't take in consideration the feelings of the children.
Having a disability is hard enough but when people point out the differences even more, self esteem plummets. Teachers need to make children feel more comfortable and integrated with peers. At 5, this can effect her self esteem for many years.
Thursday, March 22, 2012
Monday, March 19, 2012
I started doing Pilates around 2004. I ordered Winsor Pilates from TV. It came with a three disc program - beginners, 20 minute workout and advanced. I got it because Pilates is an on the floor exercise and good for muscle tone.
I'm most independent on the floor and can do just about any exercise. Just like anyone else, it may wear me out or hurt a little but it doesn't harm my CP. it's actually good for it.
Before I was pregnant, I did Pilates 5 days a week. I did the twenty minute work out three times a week and the longer twice. My friend/attendant joined me after breakfast. I admit I felt great and think I looked good. After I found out that I was pregnant, I stopped because Pilates works a lot on your stomach muscles. It could hurt the baby.
I started it back again about three years ago. I joined a class at the YMCA but I got a very cold response. The instructor never came out and said it but I knew she felt uncomfortable with me there. I don't know why exactly. I did all the floor moves fine and modified the standing ones.
I stopped again because life got very busy again. However, I'm back and joined another class at the YMCA. The teacher seems fine with me being there. Some of the ladies look at me funny but I just do my thing. I try to do it at home also.
For about two months now, Jeff has been working out at the gym before work. I try to wake up and do my pilates before Laura wakes up. I feel more energized, healthy and flexible. Hopefully, I can keep up this healthy habit.
Friday, March 16, 2012
The Ashley Treatment came out about five years ago. A couple decided to stunt the growth of their daughter who had severe cerebral palsy. They sterilized her and made it so she wouldn't grow.
They did this so they could easily take care of her. However, it's a very slippery slope even with the best intentions. This procedure is now increasingly popular.
When I was little, I couldn't speak well and no one knew my potential. It's scary that parents and doctors can make these decisions. I think messing with mother nature is never a good thing. Life is what it is and should be limitless.
If I was sterilized, I'd never have beautiful Laura. Granted I know parents or society won't want people with mental challenges to reproduce but who are we to decide?
Wednesday, March 14, 2012
March is cerebral palsy awareness month. Cerebral palsy used to be a more publicised disability. There were yearly telethons and charity groups for cerebral palsy research. Now CP has been pushed away but it still affects thousands of people.
I have cerebral palsy due to hospital error. I have athetoid spastic quad CP. I cannot walk due to balance and sometimes my muscles do their own thing. My speech is affected. In my daily life, I need assistance in dressing, eating, transportation, getting in my wheelchair etc.
At home, I'm most independent on the floor. Thanks to a more accessible bathroom, I can get in and out of the shower, ŵash my hands (I have a lowered sink. My 5 year old loves this. ) A few years ago, I finally gained the strength and courage to pull myself up to use the toilet myself. However, I need help in public bathrooms.
I get in bed by crawling on a stool and then climbing on the bed. I need help doing my hair, brushing teeth and other personal care things.
I recently read that my CP is severe and the lifespan is age 40. I have a daughter so I really hope not. This is exactly why we need more funding for cerebral palsy. We need more doctors that specialize in CP. When you are over 18, finding adequate medical care for cerebral palsy is difficult. We still need therapy, care and direction.
CP is supposed to not get worse as we age. However, somethings are easier and some are harder. People with CP have so much potential if given the chance. I fought stereotypes and waited for technology to help me live. I dance, I play power chair hockey, I won Ms. Wheelchair PA twice, I'm a mother, I'm a partner, I have a Bachelors Degree in education, I am a public speaker, I'm an author, I'm a teacher.
Please don't give up on Cerebral Palsy. We have a voice and deserve the research too.
Tuesday, March 13, 2012
Laura has always come up with some cute things that blow me away. I always wish I write these things down as they happen. I don't because life gets the better of us. I thought I'd share some things she says or has said.
This past Saturday, as she was in the shower, she giggled and said, "Look, there are teardrops on my back!"
She told me on Friday night, as she was trying to stretch my fingers, "I'm going to be a physical therapist and come over everyday. You can lie on the couch and I will stretch you out."
Last night after pre school, 2 swim classes, play date and playing in the backyard, she sat down to do her homework. She needed scissors and a glue stick. She asked, "can you get it for me? I had a really tough day."
After I gave her a puzzle one day, she said, "thanks Mom. I'm really appreciative of this!"
Before school she says, "I'll miss you. It's 3 hours long!"
A few weeks ago I lifted something fairly heavy and Laura said, " Wow you are strong and you are cerebral palsy."
She has told people that she plans to live in her room when she is older. Her husband and kids can sleep on the floor with our pet dog, Lady.
When our fish died, she made them a grave stone. She checks in on it.
Monday, March 12, 2012
Whenever I have the hiccups, I have some M&Ms or candy. In seconds, the hiccups go away! Try it and let me know.
Saturday, March 3, 2012
I rarely like to talk about my own personal issues, however, I thought this might help others feel less alone.
I have PSTD and in many ways, it can be more annoying than cerebral palsy. Israel, my late husband and Laura's biological father, seems to have had Aspergers syndrome. No one knew or guessed that I know of when he was alive, but after he died more and more was known about Aspergers.
I remember the day I figured it out. I was in my office looking up things about suicide and someone mentioned their husband having Aspergers. I read the signs of it and knew he must have had it. I felt horrible and angry that I didn't figure it out sooner.
With some people with Aspergers angry blow ups and social inappropriateness is common. Israel was such a smart, funny, loving and helpful person. But then he could be ultra stubborn, have no empathy on my feelings, and rigid in ways needed done.
Unfortunately, when things didn't go exactly planned or sequences weren't right - he expressed his frustration by screaming and being cold as ice. I first witnessed a major anger blow up to me two weeks after we were married. It resulted in a broken office door and a very stunned, dazed and confused wife.
I chose to stick it out. About eight months later, we separated. Things got real ugly when he put me out on the door step without shoes in 20 degree weather. He moved out for a few weeks and we went to counseling.
All these screaming fests that were a unpredictable as the weather, left me shell shocked, timid and on edge. It got to the point when he'd come home, my heart pounded, palms sweat because I never knew if it was going to be the sweet loving guy or the sullen angry guy.
If I knew he has Aspergers, I would've viewed it differently and understood. No, I should not have had stayed in that kind of state for 5 years. Leaving seems easy but it's not and when I finally did leave, he killed himself.
PSTD affects me when I know the house isn't in perfect order and Jeff comes home. I feel my heart rate increase. Jeff has never yelled over house stuff. When Jeff and I argue, I always have a feeling of being quiet and not voicing myself over fear.
I'm finally fighting back and trying to fight through PSTD. It's almost 5 years since Israel passed, but I still can hear the screaming and thinking in my head - will I survive this argument?
No one really knew what was going on. I hid it well, but afterwards people said they were glad to have the real me back.
Please don't go hating Israel or get the wrong message of Aspergers. With knowledge and treatment, our outcome might have been very different. Israel was as gentle as a lamb with Laura and was an excellent father. His anger was directed to me because e felt the closest to me, I imagine.
PSTD is real though and hopefully one day will be gone.
Friday, March 2, 2012
One of the best part I took out of the movie, The Help, was when the nanny said to the children she watched that they are "kind, smart and important." I thought wow - what a way to boost self esteem. When times are rough, they can have that running in their head and no one can bring that down.
As a mom, I always felt it was important to raise a kind, compassionate child than an ultra successful child. If all three happen, then great but I rather her kind.
I try to live as an example. We give to charity especially give baby supplies and clothes to shelters. We give away toys and books to those who need it. We help friends as much as possible.
So the other day my friend was talking to me about putting off dental work until she saved up for it. Laura was getting ready for school but listening. She quietly went into her room. She came back a few minutes later and was looking around in the kitchen. She came out and whispered in my ear, "where is her purse? I want to give her five dollars."
I was so touched and proud that tears filled my eyes. I gently told Donna because I didn't want to embarrass Laura or make her feel silly. We explained that she didn't need to give Donna money and she should keep saving it because she doesn't work yet. Donna thanked her throughout the day as well. I also told her how proud I was of her.
Ever since I watched, The Help, I tell Laura that she is kind, smart and important every night before bed. I think it has worked!