Enough. I have had enough.
I am done with the waterboy with T21 who is strong enough to lug dirty towels, loves the game enough to clean up after others play it, and show up to do his job rain or shine, be "given" the opportunity to run an unopposed play.
And then what? We all sit around applauding the charitable act of the team - which it was - who gave this kid a chance to "fit in" for one play? Are we serious?
OK, so maybe football's a brutal sport that could potentially harm the young man because of physical differences, but then what about the Home coming king bull? I'd love to know if these "charitable" students who are smiling for the cameras in their ball gowns after "charitably" voting for the boy or girl with T21 have invited them to parties when there was no news reporters in sight? Do they sit with them at lunch? Do they have conversations with them about how hard it is to "fit in" in high school with or without an extra chromosome?
Maybe they do, I would never assume to judge.
All I am asking is that you the reader, the community, and the world at large afford people with T21 the same courtesy.
Enough with "awareness." Sorry for the offense for those genuinely believeing it is good, but awareness walks, awareness days at the ball field, awareness shirts, on and on.
Other people are aware that our loved one's exist. They will tell you they think our loved ones are sweet (because aren't they all?) and lovable. What they wont tell you is that they also believe our loved ones are LIMITED!
Limited?
Put your three year old with T21 in a kindergarten level reading class. I currently know over 300 people across the globe whose child with T21 was a fluent reader before age 3.
Some typical kids struggle with literacy.
Call the news for the child with T21 who runs miles every week and have him explain how it helps him breathe deeper, speak clearer, and learn easier.
Some typical kids struggle with being sedentary and have speech problems.
Talk to a mother who has elected to homeschool her child with T21 because she knows it isn't an inability to learn, but the distraction in the environment that poses a challenge to an immature nervous system. Ask her if she believes she can fix it.
Some typical kids have processing problems.
Don't look at my son as limited until you look at your own and realize all children have strengths and needs.
And also, I have absolutely had enough with the "R" word discussion.
Guess what? I don't care if you use the word, just don't assume it applies to my son.
Assuming something about a child based on how they look isn't insight, it's discrimination.
Finally, I have had enough with people thinking it's compassionate (or in any way their ability) to "allow" a person with T21 a "special" opportunity to experience the joy of living in this world, being accepted, competing, and "fitting in."
It isn't compassionate, it's ignorance. I promise you my son - and MANY others with T21- will not only compete, but they will succeed.
And they wont ask your permission.
A place where achievement, expectations and dreams for babies and children with Down Syndrome thrive! This blog was started by an Occupational Therapist and mother of a 3 year old boy with Down Syndrome (hereafter referred to as T21), who refused to believe the stereotypes and set out to form her own action plan. Armed with a Master's degree in Occupational therapy she set out with an insatiable desire to redefine the reality of what it meant to receive a diagnosis of T21 today.
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Love this! My son is only 16 months old but I'm already OVER IT! The inspiraporn just turns my stomach most times. Time for acceptance...not just awareness.
ReplyDeleteAwesome post. Thanks for your fresh perspective! It is so welcome in this world of "way to go" when the cheers are way too soon and show a lack of faith that children can do more when the bar is put higher. Thanks.
ReplyDeleteThank you! This is exactly what I have been thinking during the last year when friends and family forward emails or newspaper clippings about anyone who happens to have the same diagnosis as my son.
ReplyDeleteGeralnyn, I attended high school in a small rural school in Central Idaho a friend of mine who also attended has T21. Everyone I went to school with treated her with kindness and inclusion. While she was never elected Prom Queen or anything she did have many friends (the whole school) who always talked to her like just another person, had her sit with them at lunch, carried her books (she has fragile bones) etc. Having a person with Tina's condition taught us to be better people and to look beyond physical characteristics to who someone is inside. This is a life lesson that if everyone learned would solve racism, discrimanation and ablelism. Tina was not as blessed as Lucas has been early interevention wise, although she has very devoted parents who adopted her out of the foster care system at age five. Your blog makes me wonder who she would have become if she had, had the right help. She is a vibrant person with a very good sense of humor who now lives on her own in an apartment. Tina always knew that she was different and she suffered from occasional bouts of sadness because she knew that she wasn't normal. Her best memories are of high school and all her friends. We still go out for cocoa at Starbucks when I am in her city. Tina was and is my friend not because I felt sorry for her but because I felt that everyone deserves to have friends and a rich life; my classmates felt the same way. I can hope that by electing special needs kids (sorry for the term) to prom royalty, or allowing them to make a winning play those kids were trying to give them a richer high school experience in a misplaced, well meaning way. I agree with you that we need to stop infantizing people with down syndrome and other special needs. Today I have a daughter with high functioning autism, and another with mosaicism which is how I found your blog. I have pushed the envelope with my oldest like you have with Lucas and been amazed at her progress. She is in school now and I hope that her classmates will look past her stimming and other "autistic behaviors" to who she really is a bright little girl who desperately wants friends to play with. We need to start seeing children as children regardless of genetic difference, syndrome etc, all children deserve friends, support, the love of their community and high expectations. Keep up the good work with Lucas!
ReplyDeleteThank you for sharing your story, how I pray Lucas will be blessed to make real friends like you were to Tina. You gave her what I will die fighting for - my son's right to be who he is, to be accepted as equal, and for a happy life. Thank you again!
DeleteHi Geralyn, thanks for your great post. I have a 3 year old daughter with t21. We are originally from mongolia but currently live in utah. We came here 2 years ago. Unfortunately my work contract is ending next week and we have no choice but to go back. I have been desperately looking for a job to stay here but no luck so far. If we go back to mongolia my daugther will have no life. The level of support and acceptance there is probably about same as 50 years ago in the US. I have a masters degree in finance and have about 5 years of experience. I am writing on your blog hoping someone would read it and maybe be able to help us out. My email is bayasaa11@gmail.com
ReplyDeleteI believe I saw this for a reason....
DeleteThank you so much. You give me the courage I need.
ReplyDeleteI so appreciate these sentiments, I have felt the same way since my daughter was born 5 mos ago. I wasn't sure if I would feel differently as she got older and started experiencing these things in her life. Right now I feel like much of what you have written about is patronizing, but who knows what the future holds.
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