Tag - siblings of kids with special needs

1
When People Stare At My Child Who Has Special Needs
2
Brothers and Sisters—special needs
3
Clinodactyly

When People Stare At My Child Who Has Special Needs

  When strangers stare at my daughter I feel embarrassed, angry, defensive, indignant. I feel all the feelings in no particular order.  Sometimes I make direct eye contact with the starer. Sometimes I call them on it. Sometimes I don’t.  It’s emotional for us when people turn to look at our kids. And when their stares linger, it’s hard to handle.    But I try to remind myself that different draws attention. It’s human nature to be curious. People aren’t generally cruel. They’re just trying to figure it out.  So last week when my son’s gaze fell upon a girl with Down Syndrome and his glance lasted a few seconds too long, and was perceived as a stare, I understand why her mother glared at him.  He looked upset after swim practice. Not only were his eyes stinging from the chlorine, he was feeling the sting of guilt because he’d upset the mother of a girl in his class.  He explained that when he got out of the pool he noticed a girl about Avery’s age standing on the pool deck waiting for her sister. He spotted a school crest on her shirt and he was trying to get a better[…]

Read More

Brothers and Sisters—special needs

  I fell head over heels for each of my children instantly. When my son met his baby sister for the first time, he stroked her downy soft hair and vowed to always take care of her. Sure, they may tease and squabble and possibly bite leaving behind little teeth marks, but mostly they are faithful friends. I thought I couldn’t possibly love them more until the day when the ambulance came. My youngest needed help and my oldest child, blurred out of sight, was brought back into focus with the words, “Mummy, don’t worry about me. I’m fine. Just please, please let her be okay.” Standing with his back pressed firmly against the wall out of the way of the paramedics, I warned him about the mad rush of people who would be coming any minute, and cautioned him to stay out of their way. He was holding his sister’s pink bear, which he later handed me to bring along to the hospital. I knew in that moment, that he loves his sister as much as I love them both, and my heart ached under the weight of that realization. My son has loved his sister from the moment[…]

Read More

Clinodactyly

Our son is fully aware that his little sister is different. He knows about her chromosomal disorder and her cognitive and medical challenges. He understands the implications of the R-Word and he’s aware of the range of physical disabilities that exist for so many people. He has been aptly schooled. We’ve shared Avery’s diagnosis and prognosis with him little by little. It’s like sex education that way — you want to provide enough information to prepare your child for what lies ahead, but you don’t want to bombard them with too much, too soon. He is basically up to speed when it comes to his sibling’s cognitive and physical challenges, or so we thought. I honestly assumed he already knew about her pinky fingers. Avery has a genetic condition called Clinodactyly.   Clinodactyly is the sideways bending of a finger joint. It is often caused by an abnormally shaped bone within the finger.  The pinky finger is most commonly affected.     This condition is usually heredity, but in our daughter’s case it’s a result of her genetic abnormality. My best friend actually noticed Avery’s “shorter than average” pinky fingers before I did. That’s a story in itself which I’ll share another time. […]

Read More

All images and text are copyright © 2020 Forever In Mom Genes