Monday, March 28, 2011

Parenting and disabilities

Recently in the news there was a case about a mother who became physically disabled due to complications when she was giving birth to her triplets. Her husband divorced her and wanted her children to not even know who their mother is. They will be turning five soon and the courts gave the mother some visitation rights.

I didn't really ever think that by having a child would ever mean someone would deem me unfit. When my husband died, I had a six month old baby that was fatherless and so dependent. I admit I was terrified. Many nights I laid awake trying to figure out how I was going to make everything work.

One thing I knew for sure was that I'd never leave her side. Even though I couldn't meet all her physical needs didn't mean I was any less than a mother. Luckily, I had family support and I put together a great friend and employee system. Yes, I still was scared but Laura needed me more than ever. I couldn't give up.

I feel so sad that the woman actually had to fight in court to even see her children. She almost gave her life for them. She might not be able to do everything but to be able to feel them hug her and share time, must mean the world.

Friday, March 25, 2011

Women health issues with disabilities

I just read an interesting article about the lack of support in woman's health issues when there is a disability. I have experience with this first hand.

Getting a pap smear is a normal female test and one we dread. I hate getting them because getting on the examination table is difficult and high. The table is narrow making me nervous that I'm going to fly off. Of course there are no side support or railing either. And then on top of all that, I have to somehow keep my legs apart and stay still. (I get to experience all this on Monday. )

When I was pregnant, I had a difficult time finding an ob that would accept me. They all immediately assumed that the pregnancy would be high risk and wouldn't touch me. I thought I found one and they ended up giving my name to child welfare without my permission. Finally I found the right fit and my pregnancy went quite smoothly and normal.

So, yes, we do need better awareness of health issues and disabilities !

Health and women with disabilities

Tuesday, March 22, 2011

No attendent today

My attendant called off today but of course I didn't know until it was after eight. I often panic when this happens. It's very difficult to rely on others for personal care. People do get sick but still hard.

I let Laura stay home. She had the sniffles anyway. Jeff really stepped up and wasn't angry at the situation. He set Laura and I up with enough food for the morning and afternoon. He also assisted me in getting ready and making sure I had what I needed.

Laura and I played, watched some movies and danced. My Dad then picked Laura up and surprised Zef with taking her to pick him up from school. I went out to dinner with them to O'Grady's.

When I got home my afternoon attendant was here and helped me with house stuff and getting ready for bed. I gave Laura a shower and watched Marmaduke.

Having Laura miss school isn't great, but spending the day together and having support is priceless !

Monday, March 21, 2011

Hips, Child abuse and tid bits from Jessica

My hips are finally feeling the strain of 35 years of sitting in the W position. Unfortunately, it's the only position I can sit to type and do things somewhat independently. I have been remaining in my wheelchair more or the couch but nothing beats independence. Luckily, I've been dictating more of my articles and hopefully soon have a key guard so I can use my computer from my desk.

I'm not looking forward to the day when I can't get around on the floor. I feel so free and like I can take care of myself. In July 2009, I finally learned how to get on the toilet myself in my house from the floor. One of the best things ever after relying on others all your life to take care of the most basic human need.

I have never been great at asking for help. Laura picked up on that trait. I guess life changes and so does our body.

I wrote an article today about child abuse prevention. Child abuse is a huge pet peeve of mine. I even cringe when I hear people yelling at their kids in stores.

Children are so valuable but often are treated as a half of a thought. Laura isn't a perfect child but I respect her dignity and opinion. I discipline her with her best interest in mind. I don't discipline out of frustration or anger because that doesn't really teach.

Laura swam today independently by holding a noodle in swim class. I was very proud of her. She also made fruit salad in cooking class. Ok, time to give my hip a break.

Saturday, March 19, 2011

Full moon and Red Lobster

I used to not believe the whole full moon myth. However, once I realized that Jeff and I have our worst arguments during the full moon, I believed differently. Now that I know this, I look at the calendar to prepare.

This time I knew it was this weekend so we both are careful. We have had a few minor disagreements though. We handled it and moved on.

Thursday night we went to the Trappe for St. Patrick's Day. Jeff's parents took Laura after we met them for dinner. They missed her. A local band played at the Trappe so we decided to go. It was, of course, packed. I felt slightly nervous because drunk people respond strangely when they see someone in a wheelchair. However, I'm friends with the band so I felt pretty confident between the band and Jeff.

We had a great time and I danced like crazy. I hardly drank alcohol. I don't need to to have fun. Jeff enjoyed himself and we got a couple free shirts. At one point, Jeff left and a huge drunk guy started to get a little too friendly. The band kept watch as well as a fast moving bouncer who saved my phone from being squashed.

The next day we got me a GPS for my van and went out to dinner at Red Lobster. We were given the wrong waiter, the wrong food and Jeff must have had food poisoning because he threw up violently the minute we came home. We won't be going there again anytime soon.

Today I play hockey. Unfortunately Jeff is working but my friend, Grace, is taking me. I'm excited !

Sunday, March 13, 2011

Kindle and Cerebral Palsy

I remember learning to read the book Go Dog Go while sitting next to my father on out living room couch. In fact I read that book to Laura tonight before she went to bed. I like reading, but due to my cerebral palsy, it wasn't always easy.

I could never hold a paperback book. My arms and hands lack the control. When I was at home, I'd sit in the W position and use my knees as weights to anchor the pages. My neck and back would eventually ache but I loved a good book.

At school, the teachers would place my book on a book stand and I'd have a have to ask someone to turn the pages. I read fast so I would feel bad constantly asking so I often re read pages.

When Kindle came out, it was a little above my price range. I kept the idea in mind. I asked for one for Christmas this past year and received it.

Other than the on/off switch being a little hard to do and some of the keys are tiny, I love it. Reading is finally comfortable and fun to do. I wish I had the Kindle in elementary school and up. My life would have been so much easier. But I'm sure glad they have it today.

Kindle 3G Wireless Reading Device, Free 3G + Wi-Fi, 3G Works Globally, White, 6" Display with New E Ink Pearl Technology

Saturday, March 12, 2011

And the world should pause... How does God do it?

It looked like a science fiction movie but was much more real.

Laura woke up early on Friday (around seven. ) Jeff has offered several times that if I woke him, he would take care of Laura. I probably took him up on this offer about four times. She can be headstrong and determined to see Mommy no matter what and she's always so so cute and sweet when she first wakes up, that I just get get up and take care of her.

I normally have Laura shower at night but she nor I felt like it Thursday night. So we decided for her to get one before she dressed. About one year ago, I started helping Laura shower. Before that me and an aide would do it and she would freak out. So when she was tall enough to reach the shower handle, I had an idea.

I talked Laura through the shower. Guess what? No more crying. Showering became much less stressful. Now she plays, washes herself, washes her hair and puts her toys away practically by herself.

So, after Laura was happily in the shower, I crawled across the hall to my office. Keep in mind that I can hear everything and she's in the shower - not bath - so she was safe.

When I clicked on CNN to read the news, I was astonished to learn about the earthquake and tsunami in Japan. Those poor people were hit out of no where. I was picturing parents trying to save and protect their child. I'd do anything in the world to keep Laura safe.

I believe in God. I read all the hype on the end of the world. I can't say that I'm completely sold. However, God must absolutely be the strongest being to sit and watch his children being hurt, tortured or killed. I cringe when Laura gets a small scrape. I want her to get her ears pierced but don't know if I could stand the pain watching her get poked.

I don't know how He does it. God is even more powerful than I imagined.

Thursday, March 10, 2011

Best toys - Right now

Here are my toy recommendations:

Leapster Explorer from Leapfrog - Very good game playing device from Leapfrog. You can put on videos, ebooks and games. All are educational and fun.

Dollhouse - Laura loves imagining with her barbies and dollhouse characters.

Barbies - Barbies encourage imagination and an outlet for her to work out her emotions.

Ipod Touch - You can put on an endless supply of fun and educational games. Great for going places too so they don't become bored.

Books - Can't go wrong with a new book!

Play doh - Laura loves modeling and pretending with play doh.

Paper & paint - This might be a little messy but well worth the effort.

Tuesday, March 8, 2011

Strep and craziness

I have strep throat again. I have had it several times throughout my life. This time it seems a bit more painful. It started out on Saturday and I got to the doctor's yesterday afternoon. Today is my second day on antibiotic and I'm still having pain when I swallow. My attendant already called off tomorrow because she has it. I'm understanding but still annoying because I didn't miss a beat but thank goodness Donna can come so Laura doesn't miss her book club class and her spring craft class.

Laura has been interesting lately. She spent a lot of time in the corner yesterday for not listening and yelling. Today was more of the same. She often talks back like a teenager. She is so sweet, smart and funny. Then she can turn into a little monster. Yesterday she threw a tantrum because she decided in the middle of the parking lot that she wanted the zipper on her jacket zipped that second.

Her vocabulary is so mature that sometimes it's difficult not to laugh. She'll say, "I need to tell you something. I made a decision to do things my way. " I'm thrilled she's so smart but it makes discipline hard.

Speaking of discipline, Jeff and I weren't always on the same page on how to handle behavior. So I printed up her routine and rules. Now no matter what his schedule, he knows what is going on when and her rules. He let me do the rules because I'm with her most of the time but he gave me his input too.

Laura went out with Israel's family last night. Certain members of his family and I aren't seeing eye to eye at all. It came down to me actually not being invited to a family function. I debated on letting Laura go but she loves her cousins and uncle. But all this drama is sure going to make future family events challenging.

I don't like drama but I'm not a push over especially matters that concern my daughter and family. She is my number one priority and always will be.

Tuesday, March 1, 2011

Growing before our eyes

Laura will soon be four and a half. It's amazing to watch her change physically, emotionally, spiritually and intellectually.

Today I noticed that her pants were not fitting quite right and her shirts seemed a little tight. Keep in mind that she isn't big by no means. She is barely thirty pounds but is getting taller and longer.

So when she was in pre school, my attendant and I went shopping at Kohls. I like Kohls because the clothes are decent in quality, fit and style. They always seem to have a sale going on. I didn't go overboard but I bought some shirts, pants and tights.

It was such a strange feeling to shop in the real girl section opposed to the toddler section. I felt sad in one way because my baby is getting older and now clothes will be bigger and of course more expensive!

After I picked her up from school, had lunch, played outside - we went in her room and took out all her clothes from her closet. I picked which ones were just right, too big and too small.

The too small pile is always somewhat depressing. I remember exactly when she wore things and so on. I did the same with her shoes.

A long with growing physically, she's learning more about God and having a greater understanding about people and love. We are reading a chapter book now and having discussion about what happened. She's learning to write and put sounds to letters.

I know even adults evolve daily hopefully to the better. But seeing a child change into an extraordinary person is a wonderful gift.

How society views people who have cerebral palsy

Have you ever had a day when you forget that you have cerebral palsy? You simply wake up, do your normal routine and don't even think ab...