Discover and read the best of Twitter Threads about #Downsyndrome
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Living w Disability
š¹I donāt know what youāre going through
š¹Is every day a struggle?
š¹Greg suffers #DownSyndrome, Alz Dz, Depression, Catatonia
š¹ Yet today he said, āSundayās donut day, but letās have āchockleā anyway & Iāll be ok.ā
Be inspiredā¼ļø
(pic w perm)
#Recovery
š¹I donāt know what youāre going through
š¹Is every day a struggle?
š¹Greg suffers #DownSyndrome, Alz Dz, Depression, Catatonia
š¹ Yet today he said, āSundayās donut day, but letās have āchockleā anyway & Iāll be ok.ā
Be inspiredā¼ļø
(pic w perm)
#Recovery
Okupasi Terapi Anak Berkebutuhan Khusus
@threadreaderapp unroll
@threadreaderapp unroll
Okupasi terapi adalah jenis terapi yang dilakukan untuk membantu anak-anak berkebutuhan khusus dalam mengembangkan kemampuan fisik, sosial, dan emosionalnya. #okupasiterapi #anakberkebutuhankhusus šŖš¼š¶š»
dev.to/hompimpacenter
dev.to/hompimpacenter
Okupasi terapi dilakukan oleh seorang terapis yang telah berpengalaman dalam menangani anak-anak dengan berbagai macam kebutuhan khusus seperti autis, down syndrome, cerebral palsy, dan lain-lain. #terapisokupasi #autis #downsyndrome š§š»āš¦½š§š»āš¦Æ
1/4:
Dear Lord,
If I seemed distracted at church today, it had everything to do with the awesome little blessing you gave us.
As youāre WELL-AWARE, I spent my time chasing Iron Will as he:
- body tackled that unsuspecting little girl;
- ripped off all those flower petals;
Dear Lord,
If I seemed distracted at church today, it had everything to do with the awesome little blessing you gave us.
As youāre WELL-AWARE, I spent my time chasing Iron Will as he:
- body tackled that unsuspecting little girl;
- ripped off all those flower petals;
2/4:
- attempted to commandeer the golf cart used to transport the mobility-impaired;
- pulled over a display stand;
- coated the window with milk from his bottle;
- practiced throwing EVERY object not nailed down;
- attempted to commandeer the golf cart used to transport the mobility-impaired;
- pulled over a display stand;
- coated the window with milk from his bottle;
- practiced throwing EVERY object not nailed down;
3/4:
- and, for his finale, as I was attempting to simultaneously control him with one hand AND answer Natureās call, he threw his matchbox car in the toilet initiating a chain of events Iām not ready to discuss in detail or without hyperventilating.
Besides, you know my heart.
- and, for his finale, as I was attempting to simultaneously control him with one hand AND answer Natureās call, he threw his matchbox car in the toilet initiating a chain of events Iām not ready to discuss in detail or without hyperventilating.
Besides, you know my heart.
1/š§µGratitude is Painās big brother
Ā
āŖļøProf Greg teaches me to accept life on lifeās terms
āŖļøICU pts teach me how to traverse pain
āŖļøGratitude is their close companion
āŖļøGratitude is not just a tenet of etiquette ā itās an essential quality of well-being
#UpSyndrome
Pics w perm
Ā
āŖļøProf Greg teaches me to accept life on lifeās terms
āŖļøICU pts teach me how to traverse pain
āŖļøGratitude is their close companion
āŖļøGratitude is not just a tenet of etiquette ā itās an essential quality of well-being
#UpSyndrome
Pics w perm
2/ I canāt pay gratitude w a checkbook, only from the ā¤ļø
šMy Gratitude Ledger is in deficit because I donāt nurture #Wisdom
Ā šI underutilize this superpower of recovery
Ā šGratitude is Gregās antidote to victimhood
šIt helps him rise above any situation
#TheLuckyFew
šMy Gratitude Ledger is in deficit because I donāt nurture #Wisdom
Ā šI underutilize this superpower of recovery
Ā šGratitude is Gregās antidote to victimhood
šIt helps him rise above any situation
#TheLuckyFew
3/ Gratitude canāt be reduced to verbal or written acknowledgment of a gift š
Ā
Greg has a deep sense of awareness of his interdependency on others, you & me, his sisters & brothers.
Heās gracious in heartfelt appreciation despite living w great disabilities.
#FindYourTribe
Ā
Greg has a deep sense of awareness of his interdependency on others, you & me, his sisters & brothers.
Heās gracious in heartfelt appreciation despite living w great disabilities.
#FindYourTribe
Today, people with #downsyndrome are living almost 50 years longer than they did in the 1940s (Esbensen, 2010).
This is largely due to advancements in the diagnosis and treatment of congenital heart disease.
"Congenital heart disease is one or more problems with the heart's structure that exist since birth." (Mayo Foundation for Medical Education and Research, 2022)
Best way to recognize pathological/neoplastic immunophenotypic changes is having a good grip on immunophynotypic variations in reactive/regenerative conditionsā¦ summarizing #FlowICCS22 plenary session 3 herešš» š§µ1/ #hemepath
Normal granulocytic maturation patternsā¦. Plots follow maturation from promyelocyte (*) to neutrophils #flowiccs22 #hemepath 2/
Here are phenotypic changes post GCSF therapy compared to Normalā¦. Donāt over-interpret this pattern as abnormal myeloid maturation #flowiccs22 #hemepath 3/ promyelocyte (*) to neutrophil
When I decided that I was going to use my voice as a survivor of #JeffreyEpstein to spread awareness about the unique risks that young #autistic girls & women like myself face, I realized many of those risks were the same for me as someone who has mosaic #DownSyndrome & that my -
advocacy & education regarding #trafficking beyond being #autistic, but who may also have mDS, or any other type of developmental disorders. I wanted to point this out because October is #DownSyndromeAwarenessMonth & so many are unaware that there are several types of DS. -
Every few days Iām going to post some facts about what life is like having mosaic Down Syndrome & spread awareness about how having mDS (as well as being autistic) made me an easier target for #trafficking. If Iām able to show others signs to look out for, even if itās just a -
I am heartbroken. I don't know what to do. My world is shattered. Broken. Unfixable. I can't breathe.
My beautiful Charlee is gone.
My beautiful Charlee is gone.
I'm supposed to be the strong one. Her protector. My baby died in my arms last night. I held her as she drew her last breath. I told her it was going to be okay. She could go if she wanted to. We felt her presence leave the room. She is at peace.
I'm not okay. My wife and other children aren't okay. Nothing can prepare you for this. No amount of pleading with God, begging him to let you trade places with your precious angel can fix it. There is a big empty hole right in the middle of me. Charlee was my whole world.
1/š§µ Are you happy?
My brother w #DownSyndrome is teaching me tons of life lessons.
In medicine & in life, I make big decisions based on guesstimates of otherās Quality of Life #QOL.
I often GET IT WRONG!
Ā
What do adults w #disability teach me about TRUTH?
Can I learn?
My brother w #DownSyndrome is teaching me tons of life lessons.
In medicine & in life, I make big decisions based on guesstimates of otherās Quality of Life #QOL.
I often GET IT WRONG!
Ā
What do adults w #disability teach me about TRUTH?
Can I learn?
2/š„ How do we ācalculateā someoneās #QOL?
Ā
#Confession: I get it all wrong when I impose MY judgment onto THEIR life.
Ā
Greg, my 57 y/o brother-in-law with Down Syndrome, has a better QOL than I do.
Why?
Digest thisā¦read onā¦
Ā
#DownSyndromeLove
Ā
#Confession: I get it all wrong when I impose MY judgment onto THEIR life.
Ā
Greg, my 57 y/o brother-in-law with Down Syndrome, has a better QOL than I do.
Why?
Digest thisā¦read onā¦
Ā
#DownSyndromeLove
3/ My working definition of QOL is āthe ability to give & receive love.ā
REREAD THATš
Greg understands the Law of the Gift: Treasures GROW when we give them away.
Itās the opposite of hoarding.
Yet, giving ourselves to others can be SCARY. Greg ponders deeply these emotions.
REREAD THATš
Greg understands the Law of the Gift: Treasures GROW when we give them away.
Itās the opposite of hoarding.
Yet, giving ourselves to others can be SCARY. Greg ponders deeply these emotions.
1/š§µ Beauty in simplicity
Ā
For too long in life, I thought success was about climbing in the šās eyesā¦higher, better, farther. My physician wife & I are ānew parentsā to my 58 y/o brother w #DownSyndrome & heās giving me all kinds of new understanding of what matters.
#COVID
Ā
For too long in life, I thought success was about climbing in the šās eyesā¦higher, better, farther. My physician wife & I are ānew parentsā to my 58 y/o brother w #DownSyndrome & heās giving me all kinds of new understanding of what matters.
#COVID
2/ When I come home, Greg is usually hiding from me, like you see here. He thinks so beautifully, āHow can I make someone else #happy in the small things in life?ā
Here he is hiding in plane sight next to our dog Butter. Look at that grin!
#Recovery
Here he is hiding in plane sight next to our dog Butter. Look at that grin!
#Recovery
3/ Hide and Seek: He taught me that if he canāt see me, I canāt see him!
At first that seems nutty, but in truth, for me to enter āinto #relationshipā w you, we do need to SEE EACH OTHER, right?
So whoās teaching who here?!
At first that seems nutty, but in truth, for me to enter āinto #relationshipā w you, we do need to SEE EACH OTHER, right?
So whoās teaching who here?!
As you may or may not know, my beautiful daughter Charlotte (we call her Charlee) is adopted. Charlee has #DownSyndrome. That doesn't define who she is, but it definitely adds to her flair! A few of my mutuals have asked how we came to adopt Charlee. I figured I'd attempt a story
My wife and I were foster parents, because sheltering abused and neglected kiddos was something we felt called to do. We're older, have adult children, so adoption wasn't really a goal for us until we brought our future son home from the hospital after 10 days in the NICU.
He was born with NAS and had a lot of complications from it. That first year was hard. Birth mom never showed up to visits, never came to court. Dad didn't either. For 2-1/2 years we went to every court date and attempted visit as we fell head over heels in love with this boy.
So, yesterday I filed a lawsuit against Ron DeSantis, the governor of Florida, over his executive order that strips from local school districts the authority to make reasonable rules protecting the health and safety of our kids. Itās a little more nuanced but thatās the gist
2/ Iām a mom of two great kids, they go to school in the same district I did back in the day. I moved to Florida in 1978 and graduated from high school in 1990. Iām a product of public education and a huge advocate of it. I went to a public college and law school (go @Seminoles!)
3/ My kids are 13 and 10. My 13YO is brilliant and clever and brave, heās funny and loves @Wizards_DnD and @LEGO_Group and @Marvel and @starwars. Heās an awesome big brother. (Super cute, too)
Our president @marjoriesba reacts on @EWTNNewsNightly as South Dakota @govkristinoem signs into law a bill banning lethal discrimination abortions of children with #Downsyndrome:
"I hear constantly among families of people with #Downsyndrome that their lives are happy - and by extension, they raise their families to a whole other place of joy that would be impossible without them." - @marjoriesba
"If you've experienced the life and friendship of a person with #Downsyndrome, you know there's a special light, a special avenue to God... they're just some of the best people that I've known" - @marjoriesba
1)In this thread, I will bring attention to the need for the prioritization of #COVID19 vaccination for people living with intellectual and developmental disability (IDD) in #Quebec. Please consider reading and sharing.
2)People living with IDD are a vulnerable health group. Yet, a lack of surveillance of COVID-19 outcomes in this group in Quebec and Canada has made it incredibly difficult to understand how the pandemic is affecting them and their families.
3)Studies have suggested that COVID-19 may pose a greater risk for people with IDD. This group has a higher prevalence of comorbidities associated with poorer COVID-19 outcomes, including hypertension, heart disease, respiratory disease, and diabetes. doi.org/10.1016/j.dhjoā¦
So with the exciting news today that NWT has 'gone green' on our map, some might be wondering how we are assigning the colours. š„š§š©
A thread... 1/n
A thread... 1/n
First of all, we have health comms expertise but we are NOT clinicians, academics or policy experts.
We ARE experts on parenting a young man with Ds.
As citizens, we can read publicly posted government policy and interpret it as, well, citizens might do...
2/n
We ARE experts on parenting a young man with Ds.
As citizens, we can read publicly posted government policy and interpret it as, well, citizens might do...
2/n
And so we've done just that: read the postings of each province and territory as they relate to prioritizing vaccinations.
Note we *only* assess posted policy.
Guidelines, frameworks and hearsay are unimportant to our kid's health so we give these no weight.
3/n
Note we *only* assess posted policy.
Guidelines, frameworks and hearsay are unimportant to our kid's health so we give these no weight.
3/n
New research commissioned by @scotgov says people with learning disabilities are three times more likely to die from #COVID19 than the general population. They released the information to parliament in a reply to my written question today š
I first began asking for this information last summer and it was due in the Autumn of 2020. The results of the work by The Scottish Learning Disability Observatory @UofGlasgow show significantly increased mortality rates compared to the general population
People with a learning disability were also twice as likely to catch #COVID19 and also twice as likely to experience severe illness as a result. The research was first wave when few people were tested.
There are two disability related stories that are popping up on my timeline and they are very different from one another but show us something interesting about disableism.
The first is about the group @DragSyndrome who had an event cancelled in the US because someone questioned whether the artists could give informed consent to perform because they all have #DownSyndrome
out.com/news/2019/9/03ā¦
out.com/news/2019/9/03ā¦
The other are the attacks being levelled against @GretaThunberg that attack not her politics but her appearance and mannerism. #GretaThunberg is being attacked for not behaving in a neurotypical way but for being visibly autistic.
theguardian.com/environment/20ā¦
theguardian.com/environment/20ā¦
EXCLUSION IS NOT PROTECTION
Peter Meijer, 31, heir to a multi-billion $ supermarket chain, is running for Congress, challenging @justinamash (who quit GOP over current admin policies) for MI3 seat. The award-winning @DragSyndrome was scheduled to perform at a venue Meijer owns.
Peter Meijer, 31, heir to a multi-billion $ supermarket chain, is running for Congress, challenging @justinamash (who quit GOP over current admin policies) for MI3 seat. The award-winning @DragSyndrome was scheduled to perform at a venue Meijer owns.
Meijer cancelled the #DragSyndrome appearance. Why? To āprotectā them, he says.
Bullshit.
The members of the UK-based troupe have #DownSyndrome (as does my daughter). Never mind that theyāre adults, talented, successful, with full agency, whoāve performed around the world...
Bullshit.
The members of the UK-based troupe have #DownSyndrome (as does my daughter). Never mind that theyāre adults, talented, successful, with full agency, whoāve performed around the world...
Meijer says he knows better. Claims heās āprotectingā ādifferently-abledā people. (Hey Peter: say ādisabled.ā As in āAmericans with Disabilities Act.ā)
My daughterās whole life, people tried to exclude her (violating IDEA, another federal law, btw). They called it āprotection.ā
My daughterās whole life, people tried to exclude her (violating IDEA, another federal law, btw). They called it āprotection.ā
When will the Syrian people be able to live in peace? Syria 8 years of invasion, suffering, torture, deaths, biggest refugee crisis, destruction, wasnāt enough for you, US-led Coalition?
#SĆria #USLedCoalition #USWarCrimes #WarCrimes #USCrimesAgainstHumanity
#USTerrorism #Terror
#SĆria #USLedCoalition #USWarCrimes #WarCrimes #USCrimesAgainstHumanity
#USTerrorism #Terror
Breaking: Several 'enemy airstrikes' target the Syrian military in northern Aleppo aml.ink/F8qb2
This November, millions of Americansā access to health care is on the line. Each day from #100DaysOut to midterm elections, weāll share the story of a Little Lobbyist who needs YOU to be a #HealthCareVoter for them. THREAD 0/100
#100DaysOut āMeet our kids and think of them when you vote. Our children deserve that.ā @ElenaHung202 bsun.md/2LTlco6
This November, Xiomara's access to health care is #WhatsAtStake. She needs you to be a #HealthCareVoter. 1/100
bit.ly/2K3XYtQ
This November, Xiomara's access to health care is #WhatsAtStake. She needs you to be a #HealthCareVoter. 1/100
bit.ly/2K3XYtQ
#100daysout Timmy wouldāve lost his insurance in the NICU if he hadnāt been born just 6 days after the #ACA banned lifetime caps on care. bit.ly/2sAzoJV
Timmy's access to health care is #whatsatstake this November. Be a #HealthCareVoter. 2/100
bit.ly/2OrNcRt
Timmy's access to health care is #whatsatstake this November. Be a #HealthCareVoter. 2/100
bit.ly/2OrNcRt
