Rare Disease Legislative Advocates Youth & Teen Advocacy Day

Rare Disease Legislative Advocates Youth and Teen Advocacy Day took place on June, 18th 2024. I had the opportunity to speak about important acts that directly impact kids and youth with rare disease across the country. I felt it was a very great experience. During my meetings The Accelerating Kids’ Access to Care Act, as well as the Creating Hope Reauthorization Act were my focus.  Having a rare disease has many challenges. Sharing about my life experiences with the hope that it may help change and make things better for others with rare diseases across the country is empowering. I will say that I was very nervous.  The meetings all took place over one day and were done using Zoom meetings. I felt like I got better throughout the day.  I had prepared notecards and been preparing by practicing with my family for the meetings. They helped me to be confident and remember what I wanted to say.   I haven't done a lot of public speaking in my 10 years. I have talked to kids in classrooms about service dogs and about Congenital Muscular Dystrophy.  Talking about legislative issues was a little bit intimidating.  I was very nervous leading up to the meetings. I had gotten a few emails as well as my families encouragement and support making me feel better.   Tibbs helped me get ready for me day, and helped me keep my energy up for my meetings by assisting me. Tibbs did his best to give me some extra love and support that morning as well.  It was great getting to meet with the staff from three different offices. I met with legislative correspondent Eve Schoenberg from Illinois Senator Tammy Duckworth's office, legislative correspondent Robert Spivey from Illinois Senator Dick Durbin's office, and policy advisor Worth Loving from Representative Mary Miller's office  They all were so kind and listened to my story, my asks, and asked questions to better understand how they could assist me and kids like me. During all of my meetings I asked for pictures.  I have recently learned to edit and add graphics to pictures.  It is something I really enjoy doing.  I have included them for you to see. 

                         

I felt that my first legislative advocacy event day went great. I am very glad was able to take part in the day and hope it had an impact to help individuals with rare diseases.

 

Steamboat Classic

 Last year I ran along with my dad in a running chair.  He pushed me in it for 4 miles in the Steamboat Classic race.  I don't remember every detail, but I do remember...at every corner there were people cheering and encouraging us to go on. Due to safety with the chair and the large crowd we got to start 5 minutes early.  I remember being cold from the wind on my face. I remember talking to my dad about my brother, and hoping he did not catch up with us and pass us.   I asked my dad what his favorite part was from last year's race, he said "leading off the race together, and sharing the experience with me".  My favorite part was being out of my power chair and doing the race experience with my dad. We were able to come in first in the women's wheelchair race category.  It was unforgettable.  I can never forget how fun it was.  

  

I had big plans ever since that race to do it again this year. Unfortunately due to my health I was unable to participate in the same way this year. There are many fun ways to enjoy the Steamboat Classic race including cheering on the competitors, the after party, and the Riverfront Market right by it on the very same day. Tibbs and I cheered on my dad, brother, sister, and many family and community members.  It was fun to spot them in the crowd of runners both at the start line and the finish line.  We were also able to enjoy music by the stage at the after party. I got to chat with some of my family and friends.  They had neat new drinks and snacks set up for the runners. 

 

I love the Riverfront Market.  They have so many vendors with homemade items, treat, artwork, and produce.  I am so glad it is located by the race because it is such a fun way to extend the morning for more fun.  It is very dog friendly.  Almost everywhere you look people have their pets.  Tibbs is such a good boy, and helps me shop and find great things.  We especially like to check out the dog treat booths, and handmade items they are Tibbs and I's favorite booths.  Tibbs is a pretty popular guy.  He tends to get recognized often, allowing us to meet lots of new people.  It is a very early morning to fit in all this fun, so we are always ready to head home and rest up. 

 

 The year has been off to a busy start. Getting back into school has been full time and I haven't had a chance to write for fun often.  Tibbs and I had a great time celebrating Christmas, my birthday, and New years!

We just got back from Cincinnati and although I have found lots of things to enjoy in Cincinnati,we only had time for hospital visits this trip.  Tibbs and I liked that you could see the grass there.  It has all been covered in snow at home.  It was a chilly trip and we are now both looking forward to spring!  Since it is so cold outside we have had to get creative on how to get Tibbs exercise.  For Christmas Tibbs and our other dog Kamy received the gift of an agility set.  It is much warmer to get them some exercise and keep sharp on skills in our basement instead of in the negative temperatures we have been having outside. 

Tibbs and I are going to start the year trying some new things.  I have decided to make Tibbs a Facebook page.  We enjoy taking pictures and videos.  It is hard to share all of our favorite pictures and videos on the blog.  We are hoping the Facebook page will be an easier way to do that, especially when we are so busy with school.  I am working on teaching Tibbs a few new things, and hope that we can share those with you as well.  Be sure to follow Tibbs on his Facebook page PGI Tibbs.

  

  

If you have not seen it ADI featured us in an article at the end of the year.  It talks all about how Tibbs and I like to come up with new ways to do things.  This is something we are going to focus on for 2024 so stay tuned.  I have added the link to the article below if you would like to check it out!

https://assistancedogsinternational.org/blog/2023/12/04/general/empowering-independence-a-young-innovator-s-journey-with-assistance-dog-technology/

Going to the Movies

 

Going to the movies at a theater may seem like a simple task, but it has some challenges.   Tibbs and I recently went to the theater to see the new movie "Wonka."  We walked into the theater through the front doors and the first thing my senses noticed was the smell of buttery popcorn.  It is a smell that I enjoy, but since Tibbs and I can't eat it we could definitely do without.  The large display of movie posters is always exciting.  New movies that have just come out and movies coming soon are like surprises just for you. I do not go to the movies often, but when I do it is always with a friend making it extra special. 

Tibbs is also my special movie buddy and is great at watching movies with me both at the theater and at home.   There are not many places for wheelchair seating at the movie theater. It is always a good idea to plan ahead or call and ask questions ahead of time.  I love that they have cutouts at most theaters allowing wheelchair users and non users to sit side by side.  The cutouts also allow extra space for Tibbs to get comfortable and relax. The theaters are dark and loud.  It could be very stressful for a dog that has not had this experience.  I have been to so many places with Tibbs that I know where we will both be comfortable.  Sometimes he does have his leg fall asleep and he will stand up to wake it up and reposition, but then always goes back to his down position.  Tibbs helps me when I get stressed by laying his head on my lap or my foot.  He can quietly get me things I might need without disturbing others with some hand cues.  We enjoy going to the movies together.  Tibbs and I enjoyed "Wonka"and think you might too.  

When we watch movies at home he is free to wander if he desires, but sometimes enjoys watching with me.  He is always around just in case I need him. He especially likes movies with dog characters.  I think his favorite we have watched together so far is "Beethoven's Christmas."  I hope you get to enjoy some relaxation, and maybe even a good movie this holiday season. 

 

December to December

I want to take you on a wild adventure back in time to the first home pass Tibbs and I got to have a year ago this month.  I had worked with Tibbs at outings previously, but this was my first ever furlough and opportunity to bring a service dog in training home to spend a week with me. 

I was so excited to go pick up Tibbs at the Bradley campus bright and early on a Friday morning.  Normally it takes me awhile to wake up and get ready.  It was not the case that morning.  I was so excited I could hardly sleep the night before.  I was up and out the door before my mom told me it was time to go.  When we got to the parking lot we quickly saw cars pull up with all the furlough dogs.  I immediately spotted Tibbs looking at me in the car window.  I immediately recognized his big brown eyes and doggy smile. As soon as he got to me he must have felt my excitement, as it took a few minutes for us both to calm down.  We got him all settled in the van and took him home.  

I showed Tibbs all around the house.  He loved my room.  Since he was on furlough he had to sleep in a kennel, so we got him all set up in my room.  It was hard adjusting to seeing Tibbs everywhere I went.  He seemed so big at the time and we had to learn to work around each other.   Now Tibbs looks so small to me.  Tibbs has not changed in size we are just so used to each other that I hardly notice his size anymore.  This was the first time for me working with a service dog for over a couple of hours.  At first it was a bit exhausting.  Tibbs and I were both trying to figure each other out.  We had to learn to work together, care for each other, and help each other. Tibbs was also in a new place learning house rules, adjusting to a new dog, and adjusting to living with a family with siblings and chaos.  Tibbs also had to learn to work full time with a power wheelchair, how to take commands from a then 8 year old girl, and practice working with me.  We both had our work cut out for us that week.  As you can see from the pictures below, a year ago we both looked a little different. 

   

 

We went to dog friendly places, and worked around home.  We learned how to do commands together and learned how to benefit each other.  I cannot count all the things that I learned that week. Tibbs taught me how to work with a service dog, the independence they can help bring, and that i really wanted a service dog of my own. I took Tibbs to my grandmas to decorate and make cookies and we just spent the week living life together.  We became best friends in just a short time.  We were able to go on a public dog outing and pass our level one public access test.  Unfortunately it was on our last night of furlough and I was going to have to take him back for more training the very next morning.  I unlike the week before had a horrible time getting up that next morning.  I was dreading taking him back and saying goodbye.  I shed a few tears and tried to remind myself it was not goodbye but see you later.   I miss the excitement of a furlough morning and learning new dogs personalities and new adventures with them.  I instead get Tibbs love and continued adventures something I didn't know existed then, but am so fortunate I get to experience every morning now. I still enjoy meeting all the new dogs and watching them grow and learn.  It is such an amazing experience getting to see them get fully trained and finally go to their forever homes with their person.

This December we will get to experience all kinds of holiday traditions together.  I no longer have to say goodbye and Tibbs and he and I are well adjusted.  Tibbs is part of our family and fits right in.  I can't imagine what December would be without him. 

SNOW

I cannot believe my girl is still sleeping.  Doesn't she know what is outside our window. It is white, it is cold, oh my SNOW!!   Finally my girl is waking up! I better give her kisses so she doesn't think she should go back to sleep.  She may need a quick snuggle to wake up faster. 

My girls sister came in, I tried to give her the puppy eyes to make sure she knew to wake up my girl by yelling SNOW!... but she didn't... she acted like it was just a regular morning. She did finally look out the window and told my girl there was snow. My girl was now awake and excited to look out the window with me.  She told me "look Tibbs snow," but of course I already knew that.  I was so excited to get to work helping my girl get ready for the day, because I knew where we were headed. My girl suggested maybe I would like some breakfast.  Of course I  decided I would eat, but I made it quick so we could go outside.  I made sure to give her all my paws and patiently wait to get cream on all of them.  Oh boy I know what she needs next... I will just go ahead and get her hat and gloves for her. She only had to remind me to "wait" a few times.  After I helped her get all bundled up it was finally time for SNOW!! 

 

While we were waiting for my human family to shovel snow off the walk my girl threw snowballs and played with me.  Nothing is more fun than playing with SNOW and MY GIRL.  We carefully played on the slick sidewalk.  My girl even had me play with my dog sister. Can you believe she loves snow more than I do?  My dog sister can be a bit much sometimes, and the snow is great for wearing her out.  She may even get so tired I may not even have to remind her to let me do my work this afternoon.  We took some fun pictures with our family.  

 

It was pretty chilly and my girl was afraid the cream had warn off on my paws and I might be getting cold. Maybe my girl is getting cold too?  I better help her get inside quickly. We got inside and all the snow off our coats.  Boy do I love warming up with a good ear scratch by her on my comfy couch.  

Oh Tibbs I am supposed to write the blog.  I guess you did a pretty good job.  You may even need a nap later.  I will have to take over next week, but I now know who I can get to fill in to write for me!

Holiday Glimmers

Holidays can be stressful.  You have to think of all the things you have to do, and all the places you need to go.  Sometimes planning for your service dog can be stressful as well. Going to peoples homes is different than every day, and they might even have pets of their own.  Navigating around homes with decorations, and small doorways can be challenging. Sometimes these challenges make me stressed, and can even make me feel like I don't want to go or participate. 

 

I found out about this really cool thing called "glimmers" it is parts of your day that make you feel happy, peaceful, glad, hopeful, or joyful.  By focusing on all of my "glimmers" throughout the day it helps me to focus on the good parts of my day.  When I reflect at the end of the day my negative experiences are always out shined by all of the "glimmers" in the day. I love the holidays, for some of the things I really enjoy.  I love decorations, and putting up the Christmas tree.  I love riding in the car and looking at everyone's holiday lights. I love celebrating my birthday that is very close to Christmas with my family. Making holiday treats to share is so fun.  Relaxing and resting after a busy day is wonderful!  

   

Going to my grandparents and getting to see them is one of my holiday traditions.  This past week we got to celebrate Thanksgiving.  This was Tibbs and I's first turkey day being together.  I was nervous about all of the thanksgiving smells, new places, and our big family crowds.  Tibbs had also had an allergic reaction earlier in the week.  Tibbs had never had anything like this happen so I of course was worried.  We had to take him back to the veterinarian so soon after his yearly visit, but I am so glad that they were able to help and he is all back to himself now.  On Thanksgiving I was concerned that his Halti was going to irritate his face since he had just had a allergic reaction, so we went with just a martingale collar. I gave him the day off from his vest since we were just going to my grandmas with my close family.  I was nervous about their house with all the yummy food smells, their pet cat, and all the decorations being up.  I am happy to report that Tibbs did amazing.  We both had a great day.  Holidays and unexpected events can make life stressful, but be sure to keep your eyes out for the "glimmers" this season!