Hitting The Road with Turner Syndrome (Literally) and what's Next!

I am writing this to assist other butterflies by giving them some knowledge from my journey and for everyone else to learn what I learned from driving training and what it means to me to be a successful driver living with Turner Syndrome and Nonverbal Learning Disability. 

I have always wanted to see if I could drive. My motto had been "I just need to know for sure... if I can't drive that's fine but I need to know for sure." Some employment challenges lead me to Vocational Rehabilitation through Opportunities for Ohioans with Disabilities. This was a VERY hard decision for me to make because I don't like being seen as having a disability. I have a medical condition which leads to challenges. Turner Syndrome is not a disability in and of itself although some of the challenges that come with it can cause disabilities. 

Anyway, to make a long story short, my vendor through Opportunities with Ohioans with Disabilities has a Driving School as part of its services. This meant that ALL of my lessons were paid for by the state. They also helped me prepare for and take my written test so I could get my temps. I found out that I had to have a job for this and I am so grateful for my job at Wendy's because otherwise I would not have been eligible for this service. Not only did they pay for driving school but they payed for Pharmacy School as well! 

Now for the lessons! It took a major commitment of time! I would mostly do my lessons on Sunday afternoons but also sometimes on Saturdays and before work.  I thought college was emotionally challenging but learning to drive was a lot harder. I had to face so many challenges related to my mental health with driving... I had to learn to believe in myself, learn how to control my anxiety, and utilize all my strength when I didn't pass the first two times to not give up. My parents would have to give me confidence when I didn't have any. My brothers and sisters-in-laws and even my little nephew also supported me. I remember driving Zachary (with a licensed driver and permission from his parents) and he said, "You did great!"

Towards the end of my driving school journey, I learned that I could not get with my license without God taking the wheel on my behalf. I was too weak and just didn't feel like I could do it! To bring some perspective- driving is the hardest thing for ladies with Turner Syndrome. This is because of Nonverbal Learning Disability which 90% of us have. Related to driving, NLD causes us to have visual-spatial challenges as well issues with depth perception. To get my license, I literally had to not only not listen to the people who said I couldn't do it but I also had to overcome the challenges caused by Nonverbal  Learning Disability. It is a literally a  battle!!!! 

To end, I did it!!! I prayed before every test and asked God to take the wheel and on the third time, I PASSED and got my Driver's license!! Not only did I pass, but I passed PERFECT on both maneuvering and driving!! This is what a butterfly does!!!! We don't settle!!! My instructor sent me the results with the score, and I will keep it forever!!! 

So, what is next for this butterfly? I am still working at Wendy's while in Pharmacy School for some source of income. After Pharmacy School, I will go back to the vendor who will help me find a job in Pharmacy as a Pharmacy Tech and once I land a job, I will have Job Coach the first 3 months that will work with me and the employer. They will then phase out but can come back if needed. Sometimes, I doubt myself there but then I remember what battle I just won and it motivates me to not give up! 

So many things had to fall into place, and in God's time it happened! It really happened!!! Did it hurt? YES! Was there frustration and tears? ABSOULTETLY! The take-away is fight but fight with God on your side. I didn't until I made it to the testing period. It was then, I realized I couldn't do it on my own. Don't settle for what people say you can't do! Set out to prove them wrong! If it is God's will- you WILL prove them!!!  

The Road to Gideon James

I have almost always had a dachshund. I was born into a family that had one. Her name was Nicki. We had to put her down when I was 7 so I do not remember her too well. I remember crying the night before we put down, so I know I had some form of attachment to her. When I was 10, God led us to Caleb! He was an amazing little boy!!!! We had him until I was 27 in 2016, when we sadly had to put him down. He was 17 and we had him for that length of time. My family let me make the decision of when we put him down which meant a lot to me, and it helped me with the grieving process.

For 9 years, I was without a puppy. I now know after getting Gideon, I waited too long. There were issues with timing and just regular logistics. Now it was possible to get a puppy and that is what I did!!! I knew this was going to MY puppy and dog and because of that, I have known for years that my baby would be named Gideon- Gideon James. Gideon is my favorite biblical prophet, and his story means so much to me and I see myself in Gideon. I chose the name James for his middle name because James in one of my favorite chapters in the Bible. Caleb had a biblical name, and it was also important to me to keep up with that theme. 

Gideon is amazing! He is helping me in so many ways already! I think the biggest thing so far is he has really taught me about God's love for us! I love him so much! He is a puppy, so he does things that I do not like but I love him, and those moments do not make me love him any less! I may get frustrated with him, but I don't give on him! God is that way with us!!! We may do things that He does not like, but He loves us nonetheless! Like I would never think of giving up on Gideon, God never thinks about giving up on us! 

I am so thankful for my therapist! She went above and beyond to make Gideon identified as an emotional service dog (ESA) and it was finally approved! This allows him to let me without monthly fees and a deposit! He is also allowed to go to public places with me. It is such a blessing! I also learned that God does provide through that situation. 

Gideon is 2 months old! He was born on the same day as my nephew! This was how we knew it was right! I will never wait 9 years again! He has really increased my quality of life! 

2024 In Review

How was 2024 for you? I hope it was good year for you!  2024 was a remarkable and life-altering year for me.

In February, I was hired for what I thought was a great job and long story short, they let me go. It was devastating to say the least! God made a way though. I had applied for unemployment because you never know if you don't try. The State found I was "unjustifiably terminated" and received compensation. The compensation was nice but what really helped me was being told by the State that I did nothing wrong! Unfortunately, employment can be very hard for TS butterflies because of discrimination and our Nonverbal Learning Disability. I am working on those issues and am also learning to drive through a vendor with a State Agency. We knew I would not be able to learn to drive through a traditional driving school and if I learned how to drive it could only be through an agency that teaches people like me how to drive and God provided there!  

I was home for a month getting my mental health and spiritual health on track. In early April, I received a text from someone who worked with me at Wendy's saying they really wanted me back and if I wanted to go back, they would take me back immediately and they did! God provided there! If I were at the old place, I would not have a day during the week for things like learning to drive, doctor appointments, and more. I work Tuesdays-Saturdays which temporally is exactly what I need. I also learned what I want to do which is to be Pharmacy Tech! 

In July, I attended the National Turner Syndrome Conference in Orlando, Fl and I went to Disney World with my TS sisters! I learned a lot about mental health in TS and discovered I had to get my act together or it could become bad, and I did. I now have a Social Worker on my team until I can get into a psychiatrist and my meds were adjusted with the help of a psychiatrist. The medicine and dosages I am on is working so well! My Social Worker checks on me once a month. 

In August, I had a huge medical emergency because of Turner Syndrome. I am involved with many Facebook groups for TS and have read post from my TS sisters, so I knew it was possible and I knew I needed to get the hospital right away. I do not know what would have happened if I did not it was a possible issue for TS and was able to communicate that to my family and the medical staff. It literally saved my life! I was admitted and it was storybook treatment from what I read when my sisters went through it! I was admitted and had 5 blood transfusions as well as 2 iron infusions. At one point, the nurse told my mom outside they could have lost me and at discharge I was told by a nurse "You practically all have new blood!" I will NEVER forget those 6 words! I had so many close calls and this was probably the closest call I had! I am grateful to be still here! 

Spiritually, 2024 will be the year I experienced the most growth and my mental health is reaping the benefits. I can see where God has provided for me in big ways- like Wendy's taking me when they did not have to. I will never forget that Wendy's offered me my job back and that they wanted me back! I didn't have to run begging. I saw God in the people who visited me from my former church and my current one and made me so loved. I saw God in so many ways! It was not always an easy road and there were some very hard things I went through. I am still dealing with severe pain in my hand. I am still working through what the hospitalization means for my future and that is hard, and I am still processing! We will never know what happened and that is something I need to deal with as well! 

I’ll suffice it to say, I can see God working through it. It isn’t easy but then God never promised us easy. He just promised He will get us through it! So, no matter what baggage you brought with you into 2025, or what you will go through remember God is for you and not against you! Look for Him in the little ways He proves Himself to you! You are not alone!