My first daughter was born with the amyoplasia form of arthrogryposis multiplex congenita. She has extremely low muscle tone on all four of her limbs, no bicep movement in her arms, her elbows don’t bend all the way and her knees don’t straighten. She is also nonverbal and currently participates in ABA therapythroughout the week.
My youngest daughter was born with amniotic banding syndrome, for her, it means she only has a few fully developed fingers and she had to have her leg amputated. She’s addressed her physical challenges through surgery and has lots of fun sprinting around with her “robot leg,” which is what we call her prosthesis.
I take my job as a father of a child with disabilities very seriously, but it is also important to note that I am happy. I have two beautiful daughters and an amazing wife.
Here are some things I have learned along the way that I think can help anyone who knows a family like mine: