This is one of my Special Education Blog’s. I wanted to know more about Spina Bifida as I have 2 friends that have it. At Centra Cam I put together a poster to share the things I learned with everyone there. I thought I could take that information and do a blog as well. So here you go!

What is Spina Bifida?

Spina Bifida is a birth defect that  occurs when the spine and spinal cord don’t form properly.  This can cause an opening in the spine and back. There are different levels that this could affect a person in their life. Spina Bifida happens when the baby is in the mommy’s stomach. This happens within the first four weeks of pregnancy. About 120 children are born with spina bifida every year in Canada.

You can’t catch it from someone else.

Problems that occur with Spina Bifida:

• Fluid builds up around the brain and then requires a shunt to drain the extra fluid
• Paralysis, depending on the location of the opening (the higher on the spine, the more severe the paralysis.)
• Bowel and bladder control problems
• Poor hand-eye coordination which can make things like handwriting hard to do
• Learning problems or difficulty remembering things.

1. People with Spina Bifida may use splints, casts, leg braces, canes, crutches, walkers or wheelchairs .
2. They might have a lot of medical appointments or surgeries .
3. They might need to use the bathroom a lot.
4. They might have allergies.

Parents may be able to find out if their baby has Spina Bifida while the baby is still in the womb using a blood test or an ultrasound. Sometimes parents don’t know until the baby is born.

Treatment for Spina Bifida depends on the person and how severe it is. Some treatments might be visiting a brain doctor. They might need surgery, physio therapy or medicine.

It is important for women to go and see their doctor when they find out they are pregnant to learn how to keep their baby as healthy as possible. Folic Acid is good for preventing Spina Bifida. Women trying to conceive a baby should be taking prenatal vitamins and they have the right amount of Folic Acid in them.

Some famous people you might know were born with Spina Bifida.

John Cougar Mellencamp – He is a famous musician who sings popular songs like Jack and Diane, Small Town and Hurts So Good. John was born with Spina Bifida and is now the spokesman for Winnipeg chapter of The Spina Bifida Association of Canada.

Hank Williams: Was one of the most famous country music artists of all time. He was born with Spina Bifida which caused him pain especially when he was travelling and very excited to be on tour. His most famous song was, “Hey Good Looking.”

Jean Driscoll is a champion wheelchair racer who won several medals on team USA and Wheelchair section of the Boston Marathon. Jean never gave up. She wanted to be like her friends and didn’t let Spina Bifida hold her back.

I hoped this blog helped you understand more about Spina Bifida as it changed my outlook on life. Reading these stories about famous people living with Spina Bifida was encouraging. Jean Driscoll made me think of myself because I want to be just like everyone else and I don’t want my cerebral palsy to hold me back!

I think my next special blog will be on Cerebral Palsy. Do you have any topics you would like me to research and post on my blog?

For My Dad’s birthday supper my mom made noodles, potatoes, lemon chicken with chocolate cherry black forest cake . We bought him a Bluetooth speaker and he liked it. After supper we went to The Alice Hotel to celebrate but my power wheelchair couldn’t get in so we had to go back home and get my unpowered chair! Because I had my normal chair Joel and I got to dance. It was a lot of fun.

December 19th was the Centra Cam Christmas Party. In the morning we played bingo and sang Christmas songs!!!!! A group of people did a skit of the The Grinch Who Stole Christmas it was really good. Everyone does a Christmas exchange with each other and I got a ring holder, a Tim Hortons and Superstore gift certificates! That was pretty cool!

Friday December 20th RoseClub drove around Camrose and looked at Christmas Lights. I love looking at all of the Christmas Lights.

Saturday, December 21st our staff Mary Ann dressed up as Santa Clause and then we opened Nancy’s Christmas presents she sent us!!! She made homemade pickles for Theresa, homemade sauce for Craig, a toy for Janelle, spices for Kat and I got some bath bombs. It was pretty nice of her to think of us and send us gifts all the way from New Brunswick. We miss her.

On December 24th we had a house party for Christmas. All of our parents and staff who could be there, came!!! We opened gifts from each other. My mom and I went to the airport mall with our friends and there was a guy who writes on Christmas ornaments so, I got all of my roommates those for Christmas! Kat got me some bath bombs,  Theresa got me a dot to dot coloring book, Craig got me some butterflies stickers for my bedroom and Janelle got me essential oils for my diffuser!!!! I think this was the first time I met Kat’s mom! It was a really fun morning with my house.

Afterwards we went to my parents and Mom and I made cherry cookies, in the evening Mom, Dad, Luke and I watched the real Grinch Who Stole Christmas as a family! On Christmas Day the 4 of us opened Christmas presents. I got Brett Young tickets, and mask that my mom and I made and a bunch of other stuff! We then decorated gingerbread houses! When I decorate the house I like to tell my mom what I want for my house and she does it for me!

We watched Christmas Chronicles as a family. It was really good. I really liked the girl.

On Christmas Day evening Mom, Dad, Luke and I  went to our friends house which has a ramp on it – so my power chair could get in. Which was great….. but then it turned out to be a disaster! They had dog and me not thinking I pet the dog and got hives on my face! Because I am very allergic!

On Boxing Day Mom, Dad and I went to Lloydminster!! My brother Joel and Ashley met us there as they were in Moose Jaw with Ashley`s family! We played Charoodles together!

On the 29th Sunday afternoon Joel and Ashley and I went to the mall and I got to use my gift certificate for my nails!! We opened more Christmas presents and we played the wrapping ball game with everyone! We also took family pictures!

My parents got a pre-sale code from Ashley to buy Brett young tickets the day before they were on sale! We got tickets in the third row!!!! I am really excited I have never been on the floor before!

On News Years evening Theresa, Kathleen and I watched the New’s Years movie on Netflix.

It’s was a very busy Christmas with everything and it was a really special season!!!!

Sunday afternoon I decorated my bedroom door with the butterflies from Craig with my staff Kathleen!!! My mom got me some new books and we also went shopping for new clothes.

We are going to have lots of school presentations again this year that start next week!!!! I hope the year 2020 will be a awesome with good health, amazing experiences and good people in your life!!!

I went to see the Adams Family Play at the Bailey Theatre with Lori. I got a picture with the Sound Guy Duncan he used to work at Centra Cam. The play was so good but it was hard for me to understand because I didn’t know the story line ahead of time. Brian Dumont did so good…. amazing!

This Sunday afternoon we wrapped Christmas presents for my brothers and my brothers girlfriend! Last weekend on Sunday my mom, our friend Chantelle and myself went to the airport mall and did some shopping!

This last Friday afternoon there was a group of us from Camrose Association For Community Living who went to see Disney on Ice in Edmonton at the Expo Centre. We were in the wheelchair accessible seating, so that was very nice! The washrooms were to small for my wheelchair so Kathleen had to help me back up my chair into the stall. But everything else was good, it was a very special performance! I even had some poutine and bought a Frozen blanket.

When we got back to Camrose, we went to Rose Club and decorated gingerbread houses for the Christmas party table centerpieces. The Rose Club Christmas party is  this coming up Saturday night! I am excited for the party. Every year we do a gift exchange, supper, and dancing. Rebecca the Rose Club Leader does a slideshow every year of all pictures throughout the year of the fun activities we have done and I am looking forward to seeing it with my friends. We dress up for the party as well… stay tuned for pictures next month!

On Saturday afternoon my new friend Jamie and I went to The College Farmer’s Market because My mom was selling her jewelry.   We brought a mug for the Christmas party gift exchange and then we went to Garlands and Gatherings at the CRE and I brought a gift for our friend Lisa for Christmas (she is going to be grandmother after Christmas). I also bought a Christmas pin for my coat. We then went to Walmart and I got my haircut. That evening my roommates and I went to the Grinch Who Stole Christmas at the Performing Arts Centre. I got my picture with the Grinch.

On November 11 was the Remembrance Day holiday and everyone in the house decorated the house for Christmas! My roommates Theresa and I wrapped up a picture with some help from MaryAnn! This was the 1st Christmas without our staff Nancy! I think the wrapping pictures was her idea so it was kinda sad. I miss her….. we ALL miss Nancy. But we get to Face time her so that is special.

Tuesday night November 12 when I got back from Centra Cam Theresa, myself and Jessica decorated the Christmas tree!

I got a new job volunteer position at Centra Cam. I go to the Firehall on Thursdays and do the shredding. I can do it all by myself. I really enjoy going to the Firehall.

At Centra Cam we got to meet Chief Dean LaGrange the new police chief for Camrose! He has worked in the police field in various positions for 30 years. He worked in Calgary, Red Deer and now Camrose! He has 3 kids; one is a Peace Officer, one is a 911 dispatcher and one is in RCMP training! Some people gave him a tour and the rest got to ask him questions. I did an article on this for our Centra Cam Newsletter.

I got to meet baby Patrick who is Marrissa’s new baby. Marissa was a staff at my house and funny story we actually went to high school together!

I started reading Charlotte’s Web to my roommate Theresa, she loves when I read to her.

We had the birthday bash and danced the night away with Rose Club. We had chocolate cupcakes and they made a conga line behind my wheelchair it was a lot of fun.

I helped Craig and Becca with the recycling for the 1st time! Its a good thing that I didn’t have my power chair for the cardboard place because it had a step so that wouldn’t be  easy! There is a ramp for the newspapers and glossy paper so it was good!

Then Kat, Becca and I went to Tim’s for coffee! Kat showed me new pictures of her new end tables that she got from Konto! She was talking about Disneyland in October of next year! We had a great time and the washroom was easily accessible!

We went to watch skating in Red Deer on Thursday Oct 9! The skating was really neat, I loved watching it.We had wheelchair and walker seating! There was a big washroom for my power chair and I loved that. I went with Jill, Sara, Cheryl, Joanne, Kathleen and Theresa! For super we went to A&W for fries and blueberry scones.

On Saturday Oct 19 we went to see Dean Brody, Dallas Smith, Chad Brownlee, The Reklaws and Mackenzie Porter! We went for supper at Joeys with Joel and Ashley before the concert.

You gotta love wheelchair seating we were closest to the stage. The concert was really cool. I loved them all. I even got a hoodie!

Every October Camrose Association For Community Living has their charity auction and this past Thursday night we had it!! I have been doing a lot of fun stuff with CAFCL! When I was younger I went to Kandu Summer camp every year!! We would get to go on field trips every week!!! We would get to go to the swimming pool every Wednesday! We would do arts and crafts! I remember getting to go to the corn maze every summer! We also got to go to Stacey’s Farm and ride on her horses an go on hay rides! In the school year when I was younger I also got to go to respite it’s like rose club but for kids! We got to pick what we wanted to do! We did arts and crafts! Sometimes we would like to sleepover and we would watch movies! I remember going on trips to the space and science centre or the swimming pool in Edmonton!

CAFCL means a lot to me and my family. So last night we had a meal, Silent auction to support and make more money for the CAFCL for their program and services! I asked if I could say the prayer for supper and I chose this to say: God is good and God is great, let us thank him as we are fed! Give us Lord our daily bread and bless our time together at this special event Amen! I really enjoyed it! We got to listen to Krista who had been a car accident and it’s so powerful and an amazing story! This year the theme was black and white! They had No Limits balloons on the background behind their stage! They had a sideshow of pictures and their were pictures of me doing my school presentations!!!!! It’s a very special event for the Camrose Association For Community Living every October! You should get tickets and come next year!

I had to go to Edmonton again to get new belts on my butterfly braces as they were giving me sores on my feet that they not supposed to do! So far they are working.

We are carved pumpkins!! Camrose Association For Community Living gave us pumpkins! I got to get scoop lots of seeds  out of the inside of the pumpkins and then Mary- Ann helped carve the faces!

We went swimming at the Wetaskiwin pool with Rose Club. I love swimming it feels so nice to just float. I feel free like a bird. I wish the Camrose Pool would hurry up! Swimming is so important to me.

I went for a walk around Mirror Lake for 2 hours and I got to stop and check the piano they have there. We also walked downtown.

I dressed up for Halloween as a beautiful fairy. Tracy Fontaine did my amazing make up. She was set up at the Retro doing face painting.

My parents and I watched the “Wish Man” which is the movie about the creator of Make-A-Wish-Foundation. It was a really good movie. I was granted my wish and my family and I got to go to Disneyland in California in May 2012! We also went to Hollywood and Knotts Berry Farm for the whole week! Everything was paid for by the Make-A-Wish-Foundation. It is amazing what they can do. I got to tell them my 3 wishes…. My first choice was Disneyland and my other choices were to meet Justin Beiber & a hot tub for our back yard. I got my first wish! You should watch this show to see what it is all about. Thank you to Make-A-Wish-Foundation.

On Saturday evening Rose Club went to a football game. Calgary won against Edmonton!! Darby and I got wheelchair access and she was was able to sit with me!! We had some friends who were excited and gave me hand clappers! We even got a chocolate ice cream on a stick that Darby got cut up and mashed so I could eat it easily!!  The wheelchair washroom was accessible for my chair!!  But there were no buttons to open the door so  everyone was willing to help us. We drove up with my friend Mary Ann and her staff. It was an amazing experience and I would love to go again in a heartbeat with Rose Club!!! I also bought myself a hoodie.

This past Thursday  we took the house roommates and Melissa and we picked up Tracy at New Norway car wash! We went on a road trip! We went to our roommates Craig hometown of Clive and he showed us everything. Where he went to school , where he went to play basketball and even where he went to get his hair cuts! I really loved learning how about Craig’s hometown because I haven’t seen Clive before in my life!

Then we went to the Calgary Zoo! I saw lot of amazing animals and I even got to see my favourite butterfly exhibit.It was very hot in there. I think it was my first time hearing a lion roar so it scared me a little bit! We went to see the lemurs and they were walking around the place. I got a new blanket from the gift shop! It was a fun day!

On Saturday afternoon last weekend I went to see my grade one teacher Miss C and her mom! We went to Tim Horton’s and hung out! She gave me beautiful earrings. I enjoyed  spending time with her. She showed me some cat pictures and I liked that. I don’t see her near enough.

We went to Bev’s 80th Birthday party at the CAFCL office and it really nice to see everyone! I loved seeing old pictures that someone made for a side show!! Brian Dumont sang and he is amazing. I even saw my old kindergarten teacher Mrs. Johnson so that was a surprise! This is my roommate Theresa and I at the party.

It is really hard for me to get through a room when a chair is in my way!

I prefer when someone sits down to talk with me when there is a chair available. I understand this isn’t always possible.

This is a hard one for people, they don’t think of the chair as part of my body. It’s even harder when I am in my manual chair because people just push me without asking and I don’t always know what is going on.

Just because I am in a wheelchair doesn’t mean I can’t help!

This is awkward for me!

I wish people could ignore the chair and make me feel like everyone else.

Don’t be nervous if you see someone in a wheelchair. I enjoy when people say hello to me!

I don’t need special treatment I just need to be treated like everyone else.

When you are speaking to me take the time to try and find out what I am saying. Don’t assume I can’t talk at all or need someone to talk for me. This is VERY frustrating for me! I kind of get REALLY mad and upset!

I can’t do everything myself but don’t assume I need help with everything. I am pretty independent!

Make sure you ask me if I need help and I will tell you.

My wheelchair is an extension of me and I wouldn’t lean on your back! It just makes it awkward!

This is kind of weird and awkward for me when someone is SOOOOO close to me!

This makes me feel like I am a jungle gym or a playground…NOT Cool!

This is very frustrating for everyone, if you notice a van in a handicap parking spot they probably need to open the side door to get out… Not everyone realizes this and it would be helpful if more people did! Be aware of where you are parking!

I hope you learned something from this information. I mostly live a normal life but people learning these things could make everyday a little bit better!

Please share this Blog with everyone you know! We could reach so many people and maybe make a difference for some wheelchair users out there!

Every summer Kennedy and I go out for some ice cream at DQ, which is wheelchair accessible.  I got some Caramel ice cream and she got smarties ice cream! It was it her last week at Centra Cam before she went back to school.

Someone parked beside us so Kennedy had to back up the van so we could get the ramp out! People don’t realize that people in wheelchairs need the space beside them to get their ramp out in a handicap parking stall. It is very frustrating!

My roommates and I went out to Mr. Mikes for a nice day out. It was raining out and we thought we would try something new. It was a lot of fun.

We watched mean girls on Netflix in the evening. It was a really good movie, I loved it.

We spoke  to my doctor and he took me off all of my medications!! This is very good news!

I’m still waiting for my power chair to be fixed it shouldn’t be too much longer!

My Dad and I went on a road trip to Lloydminster to see my Grandma Sharon and Auntie Gail. We went out for ice cream and for a walk through the mall.

Grandpa and Shandy are here from Ontario! Every summer they bring their camper and camp out at the Whistle Stop Golf Course.

I saw my Grandpa and his girlfriend Shandy two nights in a row, we don’t see them often so this was really nice. Tonight my Grandpa was talking about redoing our kitchen as he is a handyman and does kitchen, bathroom and other wood work for people! Our kitchen needs new cabinets and a new kitchen floor!!! When I was younger he redid our kitchen and basement with my Dad’s help!

We went to the Big Valley Jamboree parade on Thursday morning with Centra Cam. Its always nice watching the parade and I enjoy the time outside. I was lucky and got to use the great bathroom at the Centra Cam outlet store!

I love watching the dancing and different floats coming down the street’s of Downtown Camrose! It was a really good way to celebrate Big Valley today.

Friday Night we saw Kane brown and Toby Keith’s concert and it was really good. We settled on the deck with everyone else who was at Big Valley from our group and we had pizza for supper!!! It was really good wheelchair access on the deck! We were seated where we had a washroom and it was accessible for me! This was really nice.

Its very hard to get around the grounds of BVJ. The pot holes and the gravel and sandy roads were not easy to get my wheelchair around! And especially when I am still in a manual chair (GRRR!) We went to meet the High Valley Band before the Old Dominion Band came on! It was very hard to get my wheelchair though the group of people! This is me with the Band, what a cool experience. I will remember this forever!

We went to the Casino restaurant for supper and went to the washroom.  I think it would be easier if they had a button that opened the actual bathroom stall door. It is hard for someone to open the door while in a wheelchair. I think people that design wheelchair bathrooms should have to try it in a wheelchair to see if it works!

We saw Old Dominion and High Valley on Saturday night with everyone, it was amazing.

We saw Brett Kissel and Brooks and Dunn on the last night of BVJ! We danced the night away until my sandals were falling off from dancing with Tracy!!!! We can’t wait for next year!

My Auntie Donna (my Mom’s sister) was at my parents house on this Sunday! She painted my fingers nails purple to match my t- shirt and sparkles on top! We played Quarkle with Luke, Joel and Ashley.

I got to go to the Wetaskiwin pool for a swim, it is SOOOO nice there! We also went for a walk around their lake its just like Mirror Lake.

These past few weeks have been VERY busy.

On June 19th we celebrated my roommate Kat’s 27th birthday with the house. We ordered in Chinese Food from  Lucky Dragon and then had some chocolate cake with icing balloons! I got Kat some essential oils for her diffusers and some bath salts! I love celebrating with my friends.

On Saturday June 25 was the fundraiser for Special Olympics at Safeway! We made Root Beer, orange and purple pop Floats for $3!!

In the evening Theresa and I played games.

I painted my butterfly box I got for my birthday…what do you think?

On Thursday the 18th of July we went on a train ride at Stettler with a whole group of the people from CAFCL and Centra Cam! There were robbers on the train trying to rob us. It was cool they were on horses. We went to a hall for supper and had a bun, potato and roast beef and then we had chocolate and white cake for dessert! There was stores to shop at when you got off the train and I bought myself a butterfly wallet and some new lotion. I also bought a t-shirt on the train ride. They had a lift so I could get onto the train with my wheelchair that was soooo nice! I love it when things are ACCESSIBLE!

On Thursday July 11th, I got a massage from Amy at the old smith clinic! My staff Mary Ann helps me get undressed and Amy does the rest! She massages everything on my body and she gets me to roll on my side so she can get to my back! Amy uses oils and face cloths with warm water!! I go once a month and I LOVE it! Everyone should get a massage!

My mom and I went to Edmonton on July 15th to get fitted for new braces for my legs. If I don’t wear braces my feet will eventually point and I won’t be able to wear shoes. Here are some pictures of the person shaping my legs into the case for the braces!  I am able to bling out my new braces with cool butterfly stickers! I also picked purple Velcro belts to help my legs stay in place! I can’t wait for my new braces I am so excited. We have another 2 hour appointment in August and I will pick them up then. Make sure you check out my blog then to see them!