In Spina Bifida the word Snowflake is referred to children because it affects them differently just like a every snowflake is different. With this said, our son Gilbert was born in 2006 we were told by our doctor that our unborn child was a baby boy we were so happy, and on the downside, he has Spina Bifida. I was happy and full of so much sadness because the future for us and our baby was unknown at that point.
That’s when our journey with Gilbert started. For the first ten years of his life, we spent it in medical specialist offices and countless hospital visits treating Gilbert for many different medical conditions like Hydrocephalus, Kawasaki Disease, seizures, bladder inconsistence, etc. Even though we still considered ourselves very fortunate that we still had him in our lives. I won’t just say fortunate, I will admit that we were and continue to be blessed. After years of continuous physical therapies Gilbert actually walks, runs and can even jump for a child with Spina Bifida he truly is miracle child.
Once Gilbert reached his teenage years, I started to noticed Gilbert’s developmental delays were lining up with Autism. Since he was very young the possibility of him being on the spectrum were becoming more apparent. I researched the Autism and reached out to other parents that we knew their children were on the spectrum, and everything became even more clearer Gilbert has been displaying Autistic signs all along. He had a hard time making friends and even was called lazy by certain family members because he struggled to understand basic chore structure and refused to follow through because he couldn’t. He was a very hard time and frustrating for everyone we just didn’t know.
I made the proper arrangements to get Gilbert tested and properly diagnosed. After months of medical appointments my suspicions on his conditions came true in 2020 Gilbert was diagnosed with Autism. Deep down I was glad to finally get the answer we knew was coming. It also was the door I needed opened to be able to further get the support we needed for him and understand the best way is to communicate with him. It will be just another part of his journey that we will have to help him navigate through.
Autism is different in every child just like the Spina Bifida snowflake saying. Learning how it affects every child helps pave the way to raising a child with an opportunity to succeed. It takes patience and even more than anything LOVE. The Autism in Gilbert is the piece that makes his snowflake unique. He will grow up and maybe he will or maybe he won’t understand the very complicated world he lives in. We acknowledge that he will always need support from us his family and I plan on teaching him with love for as long as possible that he is worth every single minute spent on him.