Miracle Boy With Chromosome 15q Duplication and Autism Makes Hope Bracelets One Bit at a Time
July 18, 2012
Pavel is a miracle boy from Decatur, GA, who was born with a rare genetic syndrome, Chromosome 15q duplication (visit Dup15q Alliance). As a result of the duplication, he has autism, a seizure disorder and is non verbal. Pavel’s fixation with straws as a young boy eventually led to a fixation with beads which helped him develop his fine motor skills and to make jewelry for BeadsKnitsandBits, a contributor to the 7000 Bracelets for Hope™ rare awareness campaign.
As a toddler, Pavel’s fixation on straws demanded the need to hold one constantly. He would stick small straws into larger straws; he put straws into furnace and air conditioner grates; any little spot that a straw would fit, Pavel would find one. All of my research into Autism, told me to encourage your child’s interests as it could lead to a job for them some day. I couldn’t imagine what kind of job Pavel would have that involved straws.
One fall, when Pavel was eight years old, we were working on some new crafts. I had a wire snowflake and was amazed how easily he could put the beads on a wire, even the really small beads. His fine motor skills for handwriting, sign language, and drawing were poor, yet he tremendous agility and precision in placing the beads on each wire.
I soon came to realize that the repetition of this fine motor skill with straws created a much needed motor plan, and he was able to easily shift from a non-functional activity to one that was functional.
Sometimes I have noticed when Pavel strings beads he likes to hum. Just as he found relaxation putting straws into furnace grates and pulling them out as a toddler and young child, he now finds stringing beads relaxing.
Our son Pavel has been my inspiration for joining the Global Genes Project and 7000 Bracelets for Hope™ campaign and my inspiration for my ChainMaille jewelry.
As I was making the jewelry I realized that making a ChainMaille pattern is like parenting a child with autism. You need to take small steps, add a lot of repetition, patience and hope, then at some point you will be blessed with a miracle. To others your miracle may seem small, but to you it will shine because you know all that went into making it happen. And here is my miracle. Pavel graduates from school this fall. He will join me in my shop making snowflake ornaments, cards, and gift embellishments. My shop is called “BeadsKnitsAndBits.”
Pavel has been perfecting his craft since age eight. He took a break during his teenage years and now he is back at it, better than ever. He is just getting started now and will be in full swing by Christmas. Pavel is the “Bits” in BeadsKnitsAndBits.”
You can find Pavel and our shop on Ebay, Etsy, Artfire and now Facebook. Take a moment and “like” us on Facebook. We hope to see you there!
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