Meet Madden! He LOVES the water, and if he could, he would swim in the pool all day long! Madden is such a ray of light in so many people's lives, and even though he is nonverbal, he is so social and can make truly anybody (even strangers!) play with him. To learn more about his AMAZING accomplishment of learning how to wave, the uplifting and amazing support his family has received through social media, and more, read the interview down below conducted with his mother.
1. Hello! To start off, can you tell me about Madden?
Madden is 5 (almost 6) and has a rare genetic syndrome called Angelman Syndrome which causes him to have significant developmental delays, seizures, sleeping issues, being non verbal (most likely during his entire life) and a lot of excitement. We finally got the diagnosis a year ago after many genetic tests, MRI’s, therapies, and EEGs. He is a very happy boy, and has a smile that can truly light up any room!
2. What are Madden's best strengths?
Besides his insanely strong grip when he gets a handful of your hair, Madden shines with light. His spirit shines beyond his physical and mental limitations. He is a perfect example of finding joy in the little things in life.
3. What has Madden recently accomplished?
Madden recently learned how to wave on command. It is about the cutest thing I have ever seen and he loves to wave at everyone and anyone! Another big milestone was being able to drink out of a straw. We have always been worried about his liquid intake, and this has been such a game changer!
4. What do you love most about Madden?
Madden is very social. He likes to look you in the eyes and thrives with one on one attention. He can make any stranger play with him. He is extremely good at non verbal communication and can make most people understand him with his grunts and gestures.
5. What are Madden's hobbies?
Madden LOVES water (a trait of angelman syndrome). He could swim in a warm pool or water hole all day long! He also loves watching other children play. He will stand on a playground and be so happy watching the kids around him running and laughing. He also loves watching real people do things on YouTube, such as getting on trains, singing, doing magic tricks etc.
6. Do you have any recommendations for other Angelman families?
Yes! My biggest resource has been my Angelman syndrome Facebook group I am in. We all take care of children with this rare syndrome, and our stories are almost exactly alike. I go to them when I have a bad day, medicine question, and anything else Madden related.
7. What important life lessons has Madden taught you?
Madden has taught me, my husband, and our 2 daughters how to be more understanding and kind people. We have learned the power of service and its ability to bring peace and love into our home as we serve Madden and his needs. We have also learned how huge the special needs community is and all the things we can do in this world to improve the day to day lives for those with disabilities.
8. When someone meets Madden for the first time, what do you hope they think?
Madden was meant to be exactly how and who he is. God doesn’t make mistakes. He has a big purpose on this earth.
Meet Lucas! This sweet boy loves to watch Youtube and can always be found playing out in the sun or watching movies with his siblings. Lucas has always been supported by a tight knit community, and he inspires everyone to be kind and inclusive to individuals with special needs. To learn more about his amazing accomplishments, the wonderful nonprofit Lucas' mother started in honor of him, and more, read the interview down below!
1. Hello! To start off, can you tell me a little bit about Lucas?
When Lucas was 20 weeks in utero, he suffered a stroke and the doctors said that there was very little hope that he would survive. However, he proved them wrong! He did live and was born with profound and complex needs including autism and hydrocephalus, which is the buildup of fluid in the cavities of the brain which requires a shunt. Lucas was delayed and non verbal for most of his life until recently. He is able to say a few words now! He needs assistance in every aspect of life including mobility, eating, bathing, dressing, and speech.
2. What would surprise people the most about Lucas?
How much he truly does understand. At first glance, it would appear as if he’s not interested in most conversations; however, that is usually not true! He is very attentive and works very hard to understand what others are saying.
3. What does Lucas love to do? What is his personality like?
Lucas is more of an introvert and often keeps company by himself. However, he loves spending time with his siblings, watching Youtube, and reading rhyming stories like “Brown Bear, Brown Bear”. He also loves to soak his face in the sun and is always down for a fun picnic at the park!
4. What are some of Lucas's best strengths?
His tenacity and persistence. Every single thing that people said he would never do, he has accomplished.
5. What are some of your favorite resources as a parent?
I love the Facebook group Finding Coopers Voice, which is a safe space celebrating the unique challenges of parenting special needs children. I also started a non profit in Lucas’s honor called The Lucas Project (https://www.thelucasproject.org/) which provides recognition, resources, and respite to special needs families.
6. What has your son taught you?
7. If you could tell the world one thing about Lucas, what would it be?
This kid is going to change the world in some way.