I wear many hats these days as the Dad of our 3 year old “Amazing Abby.” I am her educator, entertainer, chef, cleanup crew & personal trainer. In November of 2019, I took a leave of absence from my job to became a full time Stay at Home Dad (SAHD). I had no idea what was in store.
Abby was a 78 day Children’s Hospital of Philadelphia (CHOP) NICU grad. Our 3lb miracle underwent surgery for duodenal atresia about a month after she was born. Flash-forward to today…this fun loving, energetic, world traveling three year old is the center of her our world. I always say “she is the light of our lives.”
In April 2020, Abby’s CHOP Physical Therapist mentioned having Abby start treadmill training. “Wait what?!?” I thought. My one year old. ON A TREADMILL. She was barely cruising! Abby’s therapist ensured both of us that it could be done and the benefits are exponential. So my wife and I went all in on treadmill training.
Since we could not access CHOP’s PT Gym because of COVID, my wife engineered a “MacGyver” style set up that includes two bar stools, one five iron & lots of duct tape. This has allowed Abby to effectively use our home treadmill. After breakfast, Abby jumps on the treadmill and watches a little Sesame Street on the iPad. This activity has been really instrumental in helping Abby to walk strong on her own. Not to mention I get the benefit of watching a little Sesame Street too.
Seeing the strides Abby has made in 3 years are so rewarding. I certainly understand that more challenges await with Abby’s development but I am hopeful that the work we are doing now will allow Abby to flourish into a strong, accepted, & admired member of our society.
Thanks for this opportunity to share.
This school in Pennsylvania read my book, “Kelly and the Great Pinewood Derby" about Kelly, a boy with Down syndrome. They read the book to the entire Kindergarten classes. Now they have started building derby cars. The superintendent of their district was on hand to help cut the cars! Here he is with Drew!! This is so cool! They are getting prepared for a pinewood derby race they will have in honor of World Down Syndrome Day.
#downsyndrome #downsyndromelove #downsyndromeawareness #koala #Bullying #childrensbook #Kellyandkelso #Friendship #Kindness #Downrightperfect #trisomy21 #TheLuckyFew #t21 #stopbullying #Inclusion #SpecialNeeds #Books #Book #booksforkids #kidsbookstagram #booksforchildren #childrenbooks #childrenbookillustration #childrensillustration #kidsbookswelove #bookswelove #lovethisbook
In a gloomy doctor's office waiting room, he brings joy and health where there was sadness and sickness.
During a grocery trip, he brings excitement and smiles where there was once just a mundane task.
In the quiet pews of a church, he brings dance and worship.
There are no peaceful silent car rides anymore, only adventures full of singing and wonder.
In the morning mirror with a pool of insecurities, he's the tiny lips of a forehead kiss sitting in the sink, as if to say ' you're beautiful mommal'.
He makes a house a home.
He makes a holiday happy.
He gives non believers something to believe.
He gives broken spirits stitches.
When darkness creeps in, he is our light.
When it's all too much, he is just enough.
He is the peace in the chaos and the calm to my storm.
He is my favorite good morning kiss, and my hardest 'see you later'. #DownSyndrome #NothingDown #wesleyswarriors #t21
Once upon a time, babies, children and adults were diagnosed as mentally r-tarded. They were thrown into mental institutions. Parents, siblings and spouses were told there was no hope for those they loved who were r-tarded.
That time really wasn’t all that long ago.
The words “mentally r-tarded” have been replaced more recently with words like “intellectual disability” and “developmentally delayed”. Those new words are a much more accurate description of what life is like for people who have those diagnoses.
Unfortunately the word “r-tard” was adopted as a slur, essentially used to insult someone or something by comparing them to someone who is “mentally r-tarded”.
Confession - I used to say things like “that’s r-tarded” a lot. In fact one of my earliest roommates used to charge me 25¢ every time I used the word. I’m pretty sure she would have collected $5/week from me if I had ever actually paid her.
At the time, I didn’t understand what the big deal was. I didn’t mean it as an insult to people with disabilities, it was simply a word that I grew up associating as a synonym to dumb, or stupid.
But newsflash? It doesn’t matter if I meant it that way or not. That is the origin of that usage of the word.
We wouldn’t accept an argument like that to normalize other slurs. Racial slurs, ethnic slurs, slurs about someone’s sexual orientation or their religion... it doesn’t matter where or how you learned it, but it does matter that it’s insulting to the people that it impacts.
It doesn’t matter how deeply embedded into your mindset and language it is. What matters is that it’s hurtful to an entire population of people. People like AJ.
And yes, we may have learned some bad behaviors in the past, myself included. Sometimes those things are even so engrained that we don’t always catch them before they’re out of our mouths. But that doesn’t mean that you can’t actively work to stop using it and to educate yourself and others about the why behind the movement to end the usage of the “r word”.
*side note for those who want to argue for using the word to mean slow down - as in a musical sense or a speed sense - technically, that’s still an appropriate use of the word, though it’s a bit of a stretch since most people don’t use those words commonly anymore*
For Down Syndrome Awareness Month, be aware of the Down syndrome momma. The momma that loves her child unconditionally but struggles from time to time with a life she didn’t expect or ask for. Nevertheless she is her child’s greatest protector, advocate and champion. She persists when the world tells her it just isn’t possible because she knows anything is possible when it comes to her child. The Down syndrome momma’s heart softens to those around her that are different or in need while her spirit finds a strength and determination she never knew she had. She is exhausted mentally, emotionally and physically in a way she could never describe but still somehow finds the energy to advocate, write letters, read new research, try new therapies and schedule appointments all for her child. Be mindful of the Down syndrome momma that keeps a smile on her face that hides her struggles. She doesn’t want your sorrow, pity or disingenuous comments but she desperately wants your understanding, support and friendship. She finds it hard to balance celebrating the absolute joy her child brings her whilst admitting that life with Down syndrome can be hard. Very hard. The Down syndrome momma doesn’t want to change her child but she will do everything in her power to make sure the world changes for them. This Down Syndrome Awareness Month, take a moment to see the momma behind the child. Original words written by Baskets of Love Down Syndrome Support Society. @basketsofloveds
#takingthescenicroute #MoreAlikeThanDifferent #DownSyndrome #downsyndromeawareness #downsyndromelove #downsyndromerocks #TheLuckyFew #downsyndromeisbeautiful #chromosomallyenhanced #homiewithanextrachromie #seetheability #alittleextra #designergenes #upsyndrome #nothingdownaboutit #t21 #trisomy21 #shouttheirworth #differentisthenewnormal #luckiestmomsever #lifeisbetterwithyou #WouldntChangeAThing #basketsofloveds #DownSyndrome #downsyndromelove #WouldntChangeAThing #lifeisbetterwithyou #TheLuckyFew #T21Club #takingthescenicroute #nothingdownaboutit #nonprofit #spreadinglove