Hypotonia

Swim season is upon us.  For my son George, this means heading to the pool to cool off.  Like many skills, learning how to swim took a little longer.   People with Down syndrome often have hypotonia -low muscle tone.  They also can struggle with motor coordination and balance.   Learning to swim is important as we live in a warm climate.  After many years of lessons, George eventually learned to swim and competed in Special Olympic’s swim races.

Later George braved the diving board, and then the high dive at the local pool. Each year at the start of the season there is usually some regression until George remembers all the movements.  This year seemed to be an exception.  On the first trip to the pool, George went straight for the high dive.   He climbed the ladder, followed the lifeguard’s rule of waiting until all swimmers were clear, and jumped right in. However we faced a new challenge.  As George got in line to jump again, I saw a younger boy who had cut in line in front of him. Then he did it again.  This boy cut in front of many kids, but George was an especially easy target.   George’s older brother came over and told the boy to stop.  But, what would George do if his big brother wasn’t around? I worried.

On our way home, we tried to talk to George about taking turns and not letting people cut in line.   George didn’t want to talk to us about it.  I figured it would just be up to luck how the people in the line would respond. I mentioned this incident to his Speech and language pathologist.  Speech therapy is not just sounds and articulation.  It also includes pragmatics- how do we socially communicate with those around us.  She immediately agreed to work on this.    “How did you feel when this happened George? Was this OK?”   she asked.  George said that it was not. I was surprised to hear that he really did care.  He just needed some strategies.   They started with a longer phrase, but then shortened it to a simple “Don’t cut.” Next, they practiced saying it in a forceful rather than a questioning tone.  Standing up for yourself and being assertive is hard for anyone.   But just like learning to swim, I know in time, he can master this too.

Hi, my name is mamabear5. I'm here because my 13 month old daughter has severe hypotonia, hypomyelination, and suspected leukodystrophy. We are on a journey to find her diagnosis and learning how to live each day with grief and tons of love.
#MightyTogether

Hi, my name is Frances. I'm here because my infant daughter has a lot of cryptic medical diagnoses and we are still waiting for answers. She has global development delay, hypotonia and possible microcephaly.

#MightyTogether

I'm a 31-year-old, straight white male. I got OCD, social and other types of anxiety, ADD, hypotonia (low muscle tone), and I've had bouts of low-level depression for most of my life. I take 200mg of sertraline every day. I got a masters degree a couple of years ago, had a breakdown afterwards, worked in an underemployed position in warehouse logistics for three years. I now teach English online.

I had one girlfriend five years ago. It ended with her dumping me after nine months. I have one lifelong close friend, and I still live with my parents, who are getting older.

What does success look like for someone like me? I feel like I have so much potential, but I'm held back by all my problems. Are they excuses? I have a habit of comparing myself to others, but I genuinely don't know what is underneath all the mental illness...I feel like I can't separate myself from them, like my entire life has been a reaction to my brain and body betraying me...

#Depression #Anxiety #attentitiondeficiydisorder #ObsessiveCompulsiveDisorder #SocialAnxiety