Meet Miriam! She is a mighty 5 year old girl who always has a big smile on her face, and she loves to play with her 3 puppies and make new friends. Miriam has Cerebral Palsy, and she and her family strive to raise awareness and bring inclusion for it every day!
This interview is a little different and is told from Miriam herself! She talks about her loving family, her adoption story, a day in her life, and more!
1. Hello! To start off, can you tell me a little bit about yourself?
Hiya!!! I’m Miriam, I’m a strong and mighty little 5 year old girl who loves adventure! I was severely drug exposed while I was in the womb and spent 27 days in NICU detoxing.
I’m adopted and mom and dad were there the day I was born and every day since. My birth mom did a beautiful thing when she made the decision to share me with mama and daddy. She has since passed away and our family will always love her and her family for the choice she made. The drug exposure caused Hypoxic Ischemic Encephalopathy (HIE) which subsequently has led to a Cerebral Palsy diagnosis (clinically dyskinetic CP) but mom thinks I have mixed CP. It took the start of seizures and diagnosis of epilepsy at 2.5 yrs old to actually have my MRI read correctly and receive my long awaited for diagnosis of CP.
Medical stuff aside!
I love to make new friends, I love music, eating, and being with family! I have 3 puppies that watch over me good and an endless amount of people who love me! I use a talker to talk and I’m working on graduating from a walker to canes to walk! If I’m going a distance I also have an adaptive stroller! I also have some really cool foot braces that help reset my feet in alignment! My CP affects my whole body but it doesn’t stop me! As a family we share my journey with all the world through my page to advocate, bring awareness, to make new friends, and to share the love and message of Jesus - how his perfect plan brought us together and how he fearfully and wonderfully made me just like I am. When medical standards say I shouldn’t have even been born, God created me just right!
2. What are some of your challenges?
The biggest challenges I face every day are mostly around communication and trying to break through my physical limitations! I may be considered semi-nonverbal but I know everything I want to and try to say. I have a device for talking but I feel like it slows me down, even when mom tries to explain that it helps everyone understand me. I work hard every day to grow my strength physically so I can be my most independent self, whatever that looks like, which changes every day.
3. What is your day to day life like?
My day to day life probably looks very similar to the routine of most children, its just a little slower and adapted to my needs. We incorporate some physical activity every day and often that includes some physical therapy. I'm homeschooling right now because of Covid so that is also a part of my daily routine.
4. What would surprise people the most about you?
Often the able bodied community assumes that because I'm semi-nonverbal that I'm not intelligent or that I cannot hear. So it surprises people that I know what they are saying or I can hear them.
5. When someone meets you for the first time, what do you hope they think?
When someone meets me for the first time, I hope that they think I'm a fun, smart and joyful girl to be around and that they would love to be friends with me.
6. What is the most important thing for someone to understand about yourself?
The diagnosis of CP is very broad and often very vague. The most important thing I think anyone can consider about all people with disabilities is to assume nothing more than good things. Instead of making assumptions, spend time getting to know that person if you what to know what they are like!
7. Has your diagnosis affected your parents’ jobs?
Mom stays at home with me because of the extent of help and care that I need!
8. What is a recent accomplishment/ milestone of yours?
After my first intensive clinic ever I have learned to go from the floor to standing independently and then follow with taking some independent steps. This is a huge accomplishment for me!
9. Are there any resources which you recommend if anyone wants to learn more about Cerebral Palsy?
Moms favorite resource are other parents and families that are walking through similar seasons as we are and the number one place she finds that is her Instagram community!
10. Has the COVID-19 pandemic affected your day to day life?
The main way Covid has affected my life is the limit it has put on interacting with my friends and family! I miss seeing and playing with all of my friends!
11. If you could tell the world one thing, what would it be?
Be a friend!
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