Monday, October 21, 2013

Getting my wheelchair

I didn't get my first motorized wheelchair until I was 7. My parents debated back and forth on if I could handle driving it. My mother wanted me to have my independence. My dad worried if I could drive it.

Low and behold, I finally had my motorized chair! To me, I saw opportunity and fun. Sure I had to practice a lot but I caught on pretty quickly. Kids with disabilities now have an amazing variety of chairs compared to the early 1980s. Back then, choices were scarce and wheelchairs were just ugly! 

I've been in the middle of getting a new wheelchair Hell. I was evaluated back in April and here we are in October and I'm still waiting! Today I just got word that it finally has been submitted to the insurance company. Praise The Lord!  

Getting my last wheelchair was so easy compared to this. It makes no sense that someone who cannot walk all of their life or even a significant part should have to jump through so many hoops. A wheelchair isn't just a chair. It's an extension of who we are. We need it to perform daily living tasks, go to work, go shop, go places and live life normally.

Sunday, October 20, 2013

Teamwork to survive

Anyone that needs an attendant to help with everyday life knows that when they are out, life isn't very fun. Mine has been out for three weeks.  She slipped in my bathroom and hurt her knee and ankle very bad.  I feel terrible that happened to her. Even though it's not my fault, since it's at my house, I can't help but feel responsible in some way.

I am fortunate enough to have someone local who can come in as needed. She's a wonderful back up but  unfortunately not meant to be a full time day person. But thank God she's available and can at least be here to do some of the essential stuff..

Jeff and I are very fortunate to get a long as well as we do. If not, these last three weeks would have been very rough.  We have some stressful moments.  He's been doing an awesome job on taking care of the house, Jason and me.  Plus he's balancing his own jobs and his own stuff.

Teamwork is so important in a marriage but especially with children and a significant disability. Keeping things moving smoothly and efficiently helps reduce stress.

Jason is 8 months

Jason is 8 months old! He still continues to amaze me. His smile lights up the sky and his laugh melts your heart.  There is no way that you can walk away from Jason and still be in a bad mood.

He is growing into a big boy.  Most likely he is about 20 pounds right now.  He's beginning to fit into 12 month old clothes.  It's nice that he's so healthy in growing and weight.

Jason is working hard on beginning to crawl.  He lays on his belly and pushes his upper body up.  He just started to bend his knees.  He can move backwards and in a circle.  I don't think it'll be long at all when he's crawling.

He doesn't have a big interest in sitting up on his own.  We keep practicing and one day, I know he will. He's just on his own time.

Jason has learned to clap his hands.  It's so adorable to watch him clap.  He gets so proud of himself too. He also lives peek a boo and playing with his big sister.

Jason knows that I can't do everything daddy can.  He's fine with that.  When I'm in charge for a few hours, he's ok not being in the Jumperoo or exersaucer. He is very content playing on the floor.  When he's tired, he will just fall asleep peacefully with his soft blanket.

He loves his Jumperoo though and exersaucer. They are his favorite!

October is anti bullying month

October is dedicated to anti-bullying month. But it really should be a whole year celebration. Bullying does no good to anyone. 

Bullying starts off as innocent. Perhaps that person is trying to tease but it comes out wrong. Before too long, the bully feels powerful in a weird way and it continues. The person being bullied feels like the size of a pea and broken inside.

If you do not want your child to be a bully, think about how you talk to them and treat them. Do you make fun of them or tear them down? When they feel bad about themselves, they are more likely to go to school and make someone else feel terrible. The cycle continues.

Talk to children as soon as they begin pre school.  Keep the conversation going all the way until they graduate high school. Be an example on how to treat others. Your children learn from you daily.

Monday, October 14, 2013

The rain proof poncho from Buck and Buck

How can a poncho give a wheelchair user independence? All season waterproof poncho from Buck and Buck has given me much independence to enjoy the outside no matter the weather. It keeps someone both warm and dry!

On a typical Thursday morning, I transfer into my motorized wheelchair to walk my daughter to the school bus. I saw it was rather dark outside so I asked her if it was raining and she replied yes. Normally, this would mean that I would either get soaking wet or stand at my door as she crosses a busy street alone. However, today I could try my All season weatherproof poncho.

I was apprehensive about putting it on by myself but once I pulled the zipper down, I didn't have much of a problem. I have athetoid cerebral palsy so my arms don't always do what I ask. It wasn't hard even one handed.

I noticed immediately that it covered my whole lap and leg area. As many people that use wheelchairs know, when it rains or snows our lap and legs become soaked. Not with the poncho made from Buck and Buck. I could also cover my joystick box so it wouldn't get wet and my driving arm would stay dry. 

The polar fleece lining of the poncho is not only soft but warm. When I went outside in the rain and 40 degree weather, I felt comfortable. And that says a lot because I'm normally cold. 

My daughter helped me with the hood although I'm quite certain that I could've done it myself.  I'm not a hood or hat person but this hood is comfortable and doesn't blind you. It kept my head nice and dry.

The rain didn't soak into the poncho. It simply beaded up and pulled away from it. I was very impressed.  My whole body stayed warm and no rain anywhere. 

If I had to give the All season waterproof poncho some criticism, it would be this. I missed not having a front pocket so I could store my cellphone. A pocket is always nice to have especially out in the weather elements. 

I'm so happy to have this poncho and not have to worry about a dangerous situation for my children anymore.  Thank you for giving me the freedom to conquer any weather. 

For more information -

Saturday, October 12, 2013

Father creates wheelchair

Anything is possible if your mind is set to it.  Many two year olds are running around exploring the world. However, Alejandro has spinal muscular atrophy making it very hard to move. His father used his hacking skills to invent a motorized wheelchair for his son.

Alejandro's parents tried to get medical insurance to purchase him a motorized wheelchair. The insurance company denied them for five years. So his dad took creativity and ingenuity in his own hands.

He bought a $800 motorized chair on eBay.  Then the question was how would Alejandro be able to sit and drive his chair? His father adapted a seat for his son. 

He then took foot pedals and rigged them up to the wheelchair. Alejandro is able to move his feet. These movements help control the motorized wheelchair so he could steer where he wants to go.

When one door shuts, sometimes you need to open another door yourself!  Follow Alejandro's family on their blog.

Wednesday, October 9, 2013

Tom hanks

Tom Hanks has been diagnosed with Type II diabetes.  He talked about it on the "David Letterman Show" last night.  Diabetes is a disease that affects how blood sugar is managed in the body.

When someone has Type II diabetes it means that your fat, liver and muscle cells do not respond well to insulin.  Insulin is a special hormone that moves blood sugar to cells so they can store energy. Cells need energy to thrive.

When blood sugar can't move into the cells, there is an extra amount of sugar in the blood which makes someone experience hyperglycemia. This can result in shock,fainting, seizures and other things to the body.

Often people who are overweight are diagnosed with Type II diabetes. After being diagnosed, one must learn how to maintain blood sugars.  They need to learn when to eat, how to test blood sugar, how to buy diabetes supplies, take medicine and take better care of their body.

Tuesday, October 8, 2013

Kids set goals month

Children need goals too and during Kids Goal Setting week, what better time to start?  Some might look at kids and believe that they don't need goals. However, goals give them hope for the future. 

What type of goals are good for kids? Well, you don't want to overwhelm them so customize the goals to each child. Explain to them why goals are important and plan something special when they meet them. 

Example goals are:

1. Complete all homework before watching any television. 
2. Making their bed in the morning.
3. Achieving a specific grade in a certain subject. 
4. Reaching a level in sports or just joining a sport activity. 

Make the goals obtainable in a reasonable amount of time. Celebrate when the goal is reached and encourage them to set another goal. 

Monday, October 7, 2013

Friday fun

 Our weekend turned into something very fun. I consider the weekend to be Friday and Saturday because I don't have any attendants or work. Sunday I teach and clean. 

Laura had off Friday due to parent conferences. Jeff had to go to handle some business activities so I had both kids on my own. We did perfectly fine. Laura is a big help but Jason is an easygoing guy. 

I like days like these. They might be a bit more difficult but it's fun just spending quality time together without someone here. Laura always loved these days ever since she was two! I think Jason will as well. We might not always do it by the book but they are clean, fed and happy.  Not to mention most importantly- loved!

We played, did homework and watched a little bit of television. We ate lunch after Jeff returned. It was a late lunch but that's ok.  Jeff took Laura to karate. A lot of people don't go to karate when school is off, but I pay good money for it so I would like her to attend. 

Laura has been off and on with karate. She actually wanted to quit.  I told her that I wanted her to stick with it until at least the end of October. Laura is really good at karate and it would be a shame for her to quit.  I talked to her karate teacher and he gave her a pep talk. Then on Friday she was praised a lot for her moves. They said she would be able to be on the tournament team if she kept up the good work.

That night was the final First Friday event in Phoenixville until May.  Laura didn't want to go so she hung out with my dad. Jeff and I took Jason. The band was great. They were much better than other bands that play usually. I danced a lot.  Jason enjoyed it too with his little feet kicking.    The weather was very warm. It felt like a spring night other than a fall night.

It was a great start to the weekend! 

Face your fears day

October 8 is face your fears day! Facing your fears is not easy even if it sounds trivial. Fears hold us back from our true identity and new life experiences. 

Perhaps you are not being honest with someone, procrastinating doing a task, want to do something but are not or not facing reality. On face your fears day, decide to make a change. Look fear in the eye and conquer. 

More times than not, once a fear is conquered, we wonder why we were ever afraid in the first place.  As long as you are not hurting yourself or anyone else, face your fear and you will feel better you did! 

When you do something that you were afraid of doing, you will feel accomplished and proud. Then the next time you do it, it us not as hard. Everyone has a fear of something.  You are not alone, but it's how we choose to deal with it that makes the difference.

Laura's report card

Laura's school uses the trimester system. I haven't figured it all out yet but Thursday she had her SLC. SLC means student lead conference. Unlike usual parent teacher conferences, the student attends and participates.


Laura's teacher said many good things about her. She said that she can rely on Laura to do the right thing. I felt very proud to hear that. The only negative thing I heard was from her gym teacher who said Laura loses focus when she plays with her best friend.


After the meeting, we went to the hair cuttery where I had my bangs trimmed, stopped in the Goodwill and ran into Giant to stock up on Laura's favorite yogurt. Then we celebrated at Red Robin for lunch.


The day wasn't quite over yet. We took Laura to get her hair trimmed at Sweet and Sassy. I had a groupon there then headed to Toys R Us so Laura could return something and use gift cards.


I also got Jason a car that rattles and stacking cups. Laura got a game for her Leapster and a bracelet making thing.


The rest of the day we relaxed!


Thursday, October 3, 2013

Jason is seven months

Jason turned seven months old. He is as precious as always and honestly a very good baby. He now weighs 19 pounds!  He wears 9 month old clothes.

Jason is a very happy baby. He smiles easily and has a fantastic sense of humor. I get a kick out of when he sees me in my wheelchair opposed to being on the floor. Jason gives me a look of disbelief followed by a light the room up smile. 

He now loves his Jumperoo and exersaucer. I was able to get the exersaucer at a yard sale for $5! It's in excellent condition and retails $80. We purchased the Jumperoo at the Just Between Friends Sale for $30. Normally it's $90.

It's so cute to see him jumping and having the time of his life. He also enjoys holding toys and making noise. He still likes his soft toys and blankets too.

Jason can sit by himself for a few minutes but he doesn't do it consistently. We are working on it. He eats three meals a day of baby food. He likes the Gerber brand the best. Anything else he pretty much refuses.

Jason is also learning how to clap and give high fives. Everyone that meets him loves his smile and twinkle in the eye. When he is happy or excited, his feet start kicking away.  Jason hardly cries unless he is hungry, tired or hurt.  He is an amazing little boy.

Wednesday, October 2, 2013

Cerebral palsy day

October 2 is World Cerebral Palsy day. It's a day spent where people all over the world think of innovative ways to help and encourage those with cerebral palsy. People with cerebral palsy are all unique in how the disability affects them. Just a hand might be affected or the whole body.

Cerebral palsy is a difficult disability to hide. Speech, motor skills, walking and moving can be affected. Unfortunately, it's commonly misunderstood as mental retardation and some people actually think people with cerebral palsy move how they move on purpose. Statistically speaking, most people with cerebral palsy are not mentally retarded. And the body movements cannot be helped.

What does help someone with cerebral palsy is understanding and common sense. Stop assuming they are mentally retarded or deaf. Chances are you will look silly to act like that. Do your best to be patient when they speak and listen to them. Never tell someone with cerebral palsy to be still. Believe it or not, they would love to be but the body won't allow it.

Tuesday, October 1, 2013

Breaking Bad and Dexter

Jeff corrupted me. Yes, I watched the show Dexter and Breaking Bad. Both of these are not my typical television shows. However, they are both so addicting.

I was pregnant when I first started watching both too. I had to look away at the disgusting parts. I remember clearly one episode of Breaking Bad when I actually threw up in the living room because of one particular scene.

Jeff and I bond a lot over series shows. We enjoy watching them at night after the children are in bed. We also relax watching them as Jason naps and Laura's visiting family on Saturday afternoons.

I always preferred Dexter over Breaking Bad but I must admit that the Dexter final season and finale were huge disappointments. Breaking Bad had the best ending and tied up loose endings. In my opinion, I think Dexter went down hill when Deb found out his true identity. It wasn't the same mysterious show after that.

Anyway, I have many fond memories of watching both with my husband. I'm also very happy Homeland,Greys Anatomy,Body of Proof and Ironside are on. Walking Dead comes back on soon too. I'm not quite a fan of that but it is interesting. It gives me nightmares!


Hire someone with a disability

October begins National Disability Employment Month. Congress has set October to be dedicated for awareness for employers to hire those with disabilities in 1988. This was to replace Employ the Physically Handicapped Week made in 1962.

Currently it is hard for anyone to obtain a job. When a physical disability is added into the mix, employment gets even more challenging. However, fear is really the only reason why employers hold back in hiring those with disabilities.

Employers fear that people with disabilities won't be able to handle the position, afraid customers might shy away from the person or liabilities will increase. Fear should not get in the way of hiring great employees.

Employers need to hire people with disabilities. Statistically speaking, those with disabilities are better workers. They know their disability better than anyone and can adapt to the job. If customers seriously have a problem with them due to the disability, then do you really want their business anyway?

If you are an employer and are hiring, try to look at a persons credentials and look beyond the disability. You might just be hiring the best worker out there!

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...