Buddy Walk 2010

Allie's Allies 2010

   



Help me walk, Dada



Granny, Paw Paw, Allie, Mommy and "Dada"

Allie's - and our- 3rd Buddy Walk was this month and we had so much fun celebrating Allie and Down syndrome in general.  My Mom - Allie's Granny - and Bill - Allie's PawPaw came to town to participate in the walk and we had such a wonderful time watching them with Allie over the course of several days. 



Allie and Nathan



As many of you know, The Buddy Walk was introduced several years ago and they are held all over the world.  The goal is primarily to raise awareness, acceptance and to provide advocacy for people with Down syndrome. We are not looking for a cure - there is no cure. Down syndrome occurs at conception and is all part of God's plan (in my opinion).  Some people feel a "cure" is to terminate a pregnancy. (Yes, GASP!!).  Some doctor's still today encourage this option as they have no idea how capable individuals with Down syndrome can be. (yes, another GASP). 

 

Allie's Buddy Jack



So, the Buddy Walk is vital to get the word out - to introduce ourselves and prove to everyone that people with DS are not disadvantaged. They are as different as everyone else is different from each other. We all have disabilities - things we aren't so good at and things we are good at. So do they.  People with DS may learn using different methods - or perhaps not.  Which, is not much different than any one else. They have just as many feelings and emotions as people without DS and they have goals and dreams, too. So, again, the Buddy Walk raises awareness and acceptance and hopefully opens doors to allow all individuals to obtain the jobs they want, go to the schools they want, live life as they want.  Who wouldn't want this, right?  So, to all those doctor's out there and individuals who clearly still "don't have a clue". I say ... get one! 



 

Granny, Mommy, Allie



Whew... not sure where that came from, but I'm off my soap box and back onto my nice cushy chair.  I guess I just felt that needed to be said, so I'll leave it.  But, back to our day... the weather was perfect - okay, a tad hot for Alabama in mid-October as I believe we were in the mid-80's. But, we had the largest turn out ever for our Buddy Walk.  Allie's Allies - our team - got even more organized this year and had more than just signs. We had a table and soft drinks and snacks and - compliments of Granny - we had a home-made Dora Cake! Dora is a favorite of Allie's and we enjoyed having such a celebrating Dora with us.  The cake was also delicious and gave us all a much needed snack after our walk. 

 

Jenny, Melissa and Hannah

- always there for us



In fact, our walking team consisted of about 30 individuals and Allie WALKED with us. Okay, she still held our hands, but she walked a good bit of it. It is so exciting to see the changes in her and they seem to happen almost daily now. She is really becoming a little girl and no longer a baby (sniff sniff).  Additionally, we had donations from over 80 people!!  We raised approximately $2,900! As a group, the PADs organization (Parent Advocates for Down Syndrome) raised over $104,000 and money is still coming in! All money raised stays here in Birmingham to help the Parent Support group (PADS) and to help fund the Adult Down Syndrome Clinic here at UAB (Birmingham).

Allie's friend, Madison



 It was such an exciting fund raiser and it was so rewarding getting donations from all over the country - from family, friends, friends from way back when, friends of friends, and people we don't really even know.  So many people love Allie and saw the importance of donating. We thank you so much for that!  We truly are blessed to have so many loving people in our lives. 

Neighbors make the best friends!

Kimberly and Kayley with Allie & I



Leah, Sheila, Allie and I.

 Our Buddy Walk is always held in October and we always welcome you to come join us and walk with us. Or... if you can't come to Birmingham, please attend a Buddy Walk in your town, you will have a wonderful time with some wonderful people!



Thank you to everyone that supported our team and walked with us and thought about us and wished us well. We really appreciate all the help you do to get the word out about Down syndrome.

Let's Get Allie on the Cover of Birmingham Parent Magazine

http://birminghamparentcoverkids.surveyconsole.com/

Voting has begun! Help us get Allie on the cover, please. I think eventually it will have her name next to her picture, but for now she is the first one in the Special Needs category. She is wearing a yellow top and looks her typical happy self (See picture above). Voting goes through the end of October, so please vote as often as you feel like it – they ask that you vote once a day from as many computers as you have access to. I actually don't expect you to do it daily, but as you think of it, please vote. Also, the kids are super cute, so we will need your help!

Also… you probably know this, but I feel the need to repeat it - the reason I do these type of things is to try to bring awareness for Down syndrome. The more people know about it and see perfectly normal little kids like Allie, the less frightening it is for them (regardless if they are an expectant parent, a parent of a friend of a child with Down syndrome, or any number of examples). The less other people are afraid or ignorant about Down syndrome, the more normal of a life Allie will have and the more acceptance she will experience.

The goal right now is to get her on the cover of their Special Needs edition (which I heard they may have 2 next year!!) and spread the word and spread the Allie Love. :-)

Thanks… happy voting! Please spread the word if you'd like.

Also, as a side note... this is the first year they are doing online voting exclusively, therefore the site may not always work properly or quickly as they may experience a huge surge of votes (hopefully due to Allie's Fan Club -Allie's Allies) If you run into trouble voting, please just come back and try again later in the day.


Sincerely,
Captain of Allie's Fan Club
Sandy and Tim


a/k/a “Mama” "Mom" "Mommy" or whatever Lil Bit decides to call me. :-)

and a/k/a DaDa (her most favorite thing to say, recognize, ask about and favorite sign to do)



XOXOXOXOXOX to all of you!

A Thrilling Day

Today I got such a thrill when I went to meet with Allie and her Physical Therapist, Melissa. Allie got to try on some new splints (I think that is what we call them) for her feet. These will go inside her shoes and help her stand properly on her feet. She won't always need them, just now as she is learning to stand and walk to help her out. With her "loose" joints and low muscle tone, there are several things that can be done to help Allie learn to sit, stand up, stand and walk properly and these tools are just the next ones we will be using. Without shoes on, Allie - like many babies - rocks onto her heels and also rolls to the side of her foot. These splints - or braces - help to give her support so that she stands properly. We don't want to put pressure on the knee joints or other muscles in a wrong way, and this will help. Of course, you all know how little I know about such things, so I'm just hoping that I'm stating it at least close enough. The main point of this post anyway is not really about these little shoe inserts, but in the fact that we tried out a walker today and
Allie walked to me!!!!!!

The walker is a little big for her and a smaller one is on order, but when Melissa put Allie in it, she grabbed the handles like a pro and seemed to walk very fast right to me. It was thrilling to see the excitement on her face. I only had my phone with me, so I grabbed a couple videos and pictures. But, it seems like the videos can't be published here on the blog. I'm sorry. I will get more when we get the walker at the house and will post them at that time.

Allie was so proud of herself and so ready to do this. For weeks now she has watched the other kids run up to me to say hello or goodbye and I can see the look on her face of wanting to do it, too. Today, she had her opportunity and she loved it! She even threw in a little dance in the midst of it all.

I will post a lot more pictures and videos once we get the walker and practice with it. Allie is just growing so fast I can't even blog quick enough about it! Oh... and for those of you just wondering ... she now weighs 16.7 ounces! She has gained a bit since being sick in December and we are doing great with the milk! Keep lil' Allie in your prayers to gain weight and keep those GI doctors at bay. :-)

Love to you all!

Introducing Allie and her Bonnet

No, Allie is not trying out for Little House on the Prairie, although, clearly she'd get the part as Baby Laura Ingalls. And no, Holly Hobbie is not her favorite doll, either. And, finally, no, her Mom has not decided the fashion days of the early settlers were better than today's awesome clothes. But, Allie is wearing her hearing aids - and keeping them in - much more these days. Thanks to the bonnet.

So, although it isn't a fashion statement I'd like to make and I don't think one adorable girl wearing this hat will bring them back into style (let's hope not anyway), I must admit she can hear us better and that is really what is important. I must say, we don't appear to be the only ones that wonder what Allie will say about the hearing aids when she can tell us. You see, ever since she was an itty bitty baby back in the NICU, she has turned toward sound. You all remember how she turned her head and opened her eyes when I first met her and said hello. Well, she also turned to look at us and when we'd play music for her. So, clearly she can hear. She still responds to us without her aids in and it is hard sometimes to think to put them in when she is so responsive. But, her fabulous Speech Therapist - Meredith - helps us to understand it all and that encourages us to keep those hearing aids in. You see, Allie's hearing loss is mild to moderate. That means she can hear, but to really learn and be able to pronounce her words properly, the hearing aids will help her greatly. So, I'm learning that bonnets aren't such a bad thing. I'm also searching the web for a few more styles to help satisfy my desire to have my baby dressed even more adorable - preferably something from this century's style.

Allie and her bonnet - January 2009

For an idea on how Allie can hear things, click on the link "What Things Sound Like to Allie" under sites to check out. Click on the mild hearing loss for some ideas on how Allie can hear. You may want to listen to the moderate hearing loss, she is in between the two (if I understand it all correctly).

Allie's Allies

What's a Buddy Walk, Mommy?
The Buddy Walk is a walk that we have once a year to walk with and celebrate people that have Down syndrome. It is a day that we want people like you to know that we accept you for who you are. It also helps us teach other people that don't know you that having Down syndrome is okay. October is Down Syndrome Awareness Month. During this month groups all over the country walk to show they support, respect and accept people that have Down syndrome. We are walking in Birmingham, Alabama on your 11 month birthday - October 19th. We'd love to invite all of your fan club to join us, too. If they live too far away, they are welcome to support our cause by making a donation of any amount (every dollar helps and adds up) to your team, Allie's Allies.

What do we do with all the money? Can I buy a new Winnie the Pooh?
No, we can't buy anything with that money. The money goes straight to PADS - Parent Advocates Down Syndrome. That is the group we go visit every month. We learn all about Down syndrome and we meet other people with Down syndrome. It helps Mommy and Daddy a lot so we can learn the best ways to teach you things and how to find the best doctors for you. It helps you so that you can meet other babies your age, too.

Does anyone else get some of the money?

Yes, money also goes to the Adult Down Syndrome Clinic at UAB. It is only the 2nd of its kind in the nation! It will be a place where you can go when you get older to get medical help and perhaps learn skills you need to get a job and learn other things, too. It helps adults with Down syndrome right now, but it is brand new and needs money to put all the programs into place.

Will anyone come to the walk with me?
Yes, Allie. You have a lot of people that love you and they want the world to be a better place for you. If they can come, they will walk with you. In fact, we already have a bunch of people planning to walk with you!! We are really excited and they are, too!

What if they can't come to the walk?

We are asking them to make donations - they can do it online at the PADS website (see link to the side) or mail us their checks (made out to PADS of course).

What if they can't make a donation? Will you be upset?

No, I won't be upset. I understand people save their money and use it how they have planned to use it. I would ask them to consider adding our group as one of the charities they give to next year. But, most of all, I'd ask them to spread to the word to their friends and families that Down syndrome is not something to be afraid of. It is not as scary as they might think.

What is Down syndrome again? I forgot.
Down syndrome means that you were born with an extra chromosome - I call it your Superhero Chromo. This extra chromosome happened the second God started to create you and it is in every cell in your body. See, each cell in your body has 47 chromosomes instead of 46 like I have in each of my cells. Down syndrome is also called Trisomy 21 because the extra chromosome is usually on the 21st set of chromosomes. This extra chromosome has different effects on everyone with Down syndrome. Some effects are similar - which is why you may feel you look a little like someone else with Down syndrome, but some effects aren't similar. For example, you may learn to do something a lot sooner or later than someone else with 47 chromosomes. No one really knows what you will or won't be able to do. This is the same as any baby born with or without the extra chromosome. So, in the future, we will learn what your super powers are because of your extra Superhero Chromo. It is all rather exciting if you think about it!

So, everyone can help spread the word that people with Down syndrome are more like people that don't have Down syndrome than not alike, right?
Right! You sure are smart, Allie!

Okay, the Buddy Walk sounds like fun and thanks everyone for recognizing that I'm just like you, just a little younger.

Love and kisses from me, Allie B.