Friday, August 19, 2016

Accessible Halloween in Phoenixville

Accessible Halloween 

Location - Phoenixville YMCA
Date and time - October 30 5-7

Objective: To give children with disabilities an opportunity to have a fun Halloween. Trick or treating is often difficult for children with disabilities due to lack of accessible sidewalks and homes. Accessible Halloween gives kids a free, fun, accessible event to celebrate Halloween.


30 Trick or Treat stations

Six or more crafting stations

Four or more games

Sensory room

To make this happen, we need volunteers to decorate, lead crafts, lead games, lead the sensory room, hand out candy, register people etc

The first meeting is August 31 at 5:30 at the Phoenixville YMCA. Let's make this happen!!! Please come out and see how you can help.

Any questions? Please contact me at jdm19460@gmail.com 

 

Sunday, July 31, 2016

The Turkey Hill Experience

A few weeks ago, Jeff and I took the kids to the Turkey Hill Experience in Lancaster, Pennsylvania.  I heard about it awhile ago, but we never got there. So, we finally set off and went on our way.

The drive wasn't bad at all and quite relaxing. Well, all except my husband living on the edge and trying to get there on an almost empty gas tank. But, none the less, we arrived in one piece and ready for our experience. 

The first thing we noticed was a gigantic cow outside the building.  Jason seemed afraid of the cow when we tried to take a picture of us in front.  I think it intimidated him being so big.  I'm the same way, but the cow didn't bother me.

Once inside, you are in the gift shop.  This is where you buy tickets for the experience or the experience and the tasting lab. We decided with Jason, the tasting lab would be too much.  After we purchased our tickets, we went upstairs in the elevator.

The experience is a go at your own pace and all on one floor.   It has several activities for children of all ages. My children especially liked the ball pit. Towards the end they have a five minute video that you can watch all about the process in making ice cream. 

 Our favorite part was getting unlimited samples of ice cream and iced tea.  Jason ate vanilla and offered to feed me some.  He even drank out of a regular plastic cup some fruit punch. We were all amazed at how well he did!  Laura found a new favorite ice cream - rocky road!

The accessibility was very good and price seemed about right. 

 

Monday, July 25, 2016

Thank you for letting me live

Recently, in the news, a teenage girl with a disability has announced that she wants to die and her parents are allowing her. Her disability is significant but she isn't dying. She can live a full happy life despite her challenges as thousands of us do. My friend, Emily, created a web site in response hoping to inspire people to live and encouraging parents, caregivers etc to encourage people to live. The web site is thankyouforlettingmelive.com. Below is my letter to my parents:

Dear Mom and Dad,

I'm writing this letter to thank you for deciding every day of my childhood to let me live. Forty years ago, doctors handed you a baby girl who was blue due to a lack of oxygen during birth. They didn't know if I'd live or die and wished you luck. It turned out that I have severe cerebral palsy that needed lots of patience, time and care.

You could have done many things in many ways to make your lives easier. But you choose to let me live. Not only let me live but live life to the fullest. I became one of many firsts in our area. The first girl with a severe physical and speech disability to attend advanced high school, earn a degree in education, marry and have two amazing children. I also won Ms. Wheelchair Pennsylvania! I recently battled breast cancer and came out stronger than ever.

Others look at me and think the worst. I'm in pain, have no life, do nothing and can think of nothing. You saw differently and thank you!! Life has its ups and downs, twists and turns but I'm so very happy I'm here! My children now exist. I play goalie for a hockey team with others who are also living life to the fullest. I now promote breast cancer awareness so I can help others live until whatever day destiny calls us home.

Every second of our lives matters. You knew I mattered too despite my spasms, twisted body and crooked smile. Thank you!!!

Jessica Grono
Writer / Speaker
Http://jessgrono.com
 

Thursday, July 14, 2016

To the medical professionals helping me with cerebral palsy

To a medical professional who is caring for someone with cerebral palsy 

During my life, I have had to see numerous medical personnel due to being sick or normal well check ups. Unfortunately, doctors and nurses do not understand how to properly communicate and care for someone with cerebral palsy.  In an emergency situation, not knowing what to do can quickly turn into a life or death situation.

Here are some suggestions that I believe will help if you're giving someone a check up, mammogram or any medical attention when you have a patient with cerebral palsy.

Don't assume you know everything. You don't know if the person has a mental challenge or a genius IQ. Stop talking to them like they are a child or talk loudly as if they were deaf too. They deserve the same respect as anyone you help or give service to. No need to treat them any different until you know their capabilities.

Talk to them. Often a person with cerebral palsy might have a personal care attendant, friend or family member with them.  But you should direct questions or directions to the person you're caring for. It's very impolite to go in and talk to everyone else but the patient. 

Not all people who have cerebral palsy have it the exact same way. How cerebral palsy affects someone varies from person to person. Some people might be stiff while others might have involuntary movements.  Some can walk and some can't.  It all depends on the person. Ask them how cerebral palsy affects them before guessing.

Please don't say, "sit still," to someone who has cerebral palsy. Sitting still can be extremely difficult and not a choice.  The more you ask someone to sit still, the more the body reacts by moving. Explain what you're going to do and try to work together to make it work. Ask if they have ideas on positioning to help make it more comfortable.

Listen to the patient even if they have a speech impediment.  Speech impediments happen to people who have cerebral palsy. It doesn't mean that they don't know what they're saying or not comprehending. It means that you need to listen and be patient so you understand what they need, think and feel.

Don't assume someone with cerebral palsy doesn't have children, work, marriages, and hold normal lives. Cerebral palsy doesn't affect child birth or the reproductive system. People with cerebral palsy are just people with a body that responds differently in motion. Plain and simple.
 

Wednesday, July 13, 2016

Jason and camp

Jason has been having so much fun at camp.  The camp is at the YMCA and for children age 3-5. The first day that he went, he wanted to go right back to camp.  It's half day and only in the mornings. After his first few days, I signed him up for a few more weeks too.

I'm happy that he likes camp so much because he will be attending preschool in September. Camp was a good way to determine how well he would do going to pre school. So far so good!  I like that he is doing crafts, listening to stories, playing outside and other fun activities.  He also tells me all about it proudly.  

Jason is changing day by day and so is his vocabulary.  We can't help but smile from the things that he comes out with.  Our two biggest struggles with Jason are potty training is taking forever and he likes to beat up his sister. Even though Laura is going on ten years old, he still tries to kick, push, bite and anything else to her.  She is very patient and forgiving but it still is a tough situation.

I know we will survive each stage and make it.  It just takes love, patience and discipline. We will survive. 

 J

Thursday, July 7, 2016

Be the light in the darkness

Life can be a struggle. I feel angry when there is a lack of compassion to anything and anyone alive. My mind can't wrap around it, and all I want to do is ask why? But asking why is like asking a three year old why they did something naughty. The answer makes no sense because usually they don't even know.

All I can say is complaining isn't helping. Nearly all of social media is complaining.  The news makes matters worse instead of better to increase their ratings.  Higher ratings equals more money.  We need to take a different approach if we really seek change.

Stop the complaining and do something-anything-nice for a person, an animal, a community.  It doesn't matter what it is, it only matters if you do it. Saying you'll do it next week, next month or next year doesn't count.  Do it today and everyday.  We live for now and we die later.

The simplest acts are the ones that matter the most. Smile more, compliment more, be present, and be kind. Stop looking for the bad in everything and only talk about the good.  Let's bring back the good day by day and step by step.

Yes, bad things happen every minute.  But we can't help something that's happening that we have no control over. We can't help all the starving people, but we can feed a few.  We can't end all child abuse, but we can be nice to children and show kindness. We can't care for every homeless animal but we can donate things to shelters. We can't stop every baby dying in abortion, but we can help women who are pregnant that need support and their babies supplies.  We can't help those who choose to kill with guns, knives or any other violent ways, but we can stop sensationalism violence on Facebook.  No need to draw more attention to hate unless you're being proactive to help the victims. 

Life is short.  Some of us die before being born and some are lucky enough to live past 100. Live wisely and love abundantly. Make each second count. You're the only one in control of your actions. We can and will change the world if that's what we choose.
 

Monday, July 4, 2016

What it's really like to have cerebral palsy?

Anyone that has a disability can usually tell you what it's like to have their particular disability. But there are things that people might not know because talking about every little detail about your disability can be a daunting task.  I have cerebral palsy, and there might still be things that even my husband might not realize.

1. I love holding hands and cuddling but my body often times will not allow it. For some reason, my body becomes very tense when someone wants to hold me in any form. This can be very frustrating for yourself and partner when you're trying to cuddle or hold hands.  Often I need to hold my breath to keep my body still so I don't move.  It's frustrating for me because I love cuddling and holding hands but my body says no.

2. I do have a great bladder, but I still need to use the bathroom. Most people forget that you do need to use the bathroom even though it can be difficult to get to one.  I hate asking to use the bathroom even when I really need to because I know it's not easy to take me. So, I often hold it in pain and politely refuse to drink until I can get to a bathroom.

3. Yes, I like to be independent but help is appreciated when offered. When I'm on the floor, I can do many things on my own which is terrific. But sometimes in doing so, I get tired out or I hurt myself daily.  I'm not being lazy when asking for help.  I'm just trying to be nice to my body.

4. Even though I can't get my own food doesn't mean I'm not hungry.  Not being able to feed yourself is as frustrating as not being able to use the bathroom yourself.  You still feel hungry even between meals. Comments on the amounts you eat or drink aren't necessary because you're helping me. No one analyzes how much you eat or don't eat.  So, please when I ask for a second helping, no need to comment to make me feel bad.

5. My muscles and bones ache on the daily.  I'm never going to complain about every ache and pain I have but that doesn't mean that they don't exist. My body moves 24 hours a day 365 days a year. Even when I "relax" my body moves. Constant moving wears on your muscles and bones.  So, please don't put on a guilt trip when I don't want to be in a manual chair or do something that might make me more sore.  Certainly invite me and ask but if I say no, please understand why.

6. Yes, my children help me with some things, but no I didn't create them to be my personal attendants. Like any kid, my children help us out. I believe helping each other is a normal family action. Yes, you might see my toddler pick up my cellphone if I drop it in a store. You might see my daughter getting out my credit card so we can make a purchase.  However, you won't see them cooking meals, dressing me or other things directed to my care. Once in awhile you might see them feed me or give me a drink. But also know that I'm helping them as well like any parent would. My children know that we help each other because that's just what decent people do.

7. I am lucky to have my husband, but not because he accepts my disability.  Not to sound snobby, but I never had difficulty getting asked on dates or being in a romantic relationship.  Many guys accept my disability and would want a relationship with me.  I'm lucky to have my husband because he's funny, kind, considerate, handsome, likes to have fun, responsible and a good cook.
 


Laura's first Phillies baseball game

On Saturday, we had the fortunate experience to take Laura to see her first Phillies game. Back in October, a friend won tickets and he gave them to us.  We almost took Jason too but we knew he wouldn't be able to sit through a whole game.  I was lucky enough to have a friend of mine babysit him.  Jeff's dad also went with us which made it great for Laura because he taught her things about the game that I didn't even know.

Laura seemed rather nonchalant about going. She thought that she might be bored, but she got all dressed for it. I told her that many people do not even get a chance to attend a game. I said to her to take in the whole experience, and it'll be something that she'll remember always.

Citizen's Bank Park is only about a forty five minute drive, but traffic makes it a lot longer.  We arrived early though and parking in accessible parking was a breeze.  As we pulled up to the stadium, I could see that Laura's excitement grew. She sat up taller, looked around and asked questions. Laura kept saying that she couldn't believe that she was actually there!

Laura and I walked to our seats and as we did we saw hugs pictures of baseball players. We enjoyed saying their names. Luckily, we had terrific seats at the 100 level.  Laura was in awe about how close we sat to the baseball field.  Jeff took me to a family bathroom, and we were pleasantly surprised how big and clean it was.  No problem of accessibility at Citizen's Bank Park!

Since we were early, we walked to a store.  Laura really wanted a foam hand that she could put on and cheer the team on.  At first, we said no because it seemed expensive for what it was. But then I thought if this is something really important to her and will remember the rest of her life, it's worth it.  I bought it and she was very happy with it and used it throughout the game.

For being a July game, the weather couldn't have been any better.  It was overcast, light breeze, low humidity and comfortable.  It could've been so much worse!  Laura was engaged the entire game and not once complained about anything.  She ate a pulled pork sandwich and loved it. She also gave me plenty of hugs and kisses! I had the biggest hot dog of my life and could barely eat half.

Unfortunately, the Phillies lost but after the game, there were fireworks! Again, you couldn't have had better seats or weather. The fireworks were amazing and went great with the music.  It was no problem getting back to the van.

The next day Laura told me that it was the best night of her life!!! Thank you Philadelphia Phillies!