Oprah: What is it about Special Olympians why is it that going into that space makes some people so uncomfortable?
TS: Well, I think we are all afraid. Think of who these people are. They are not smart by traditional definitions, they aren't rich by traditional definitions, they aren't pretty by traditional definitions they are not successful they sometimes look sick by traditional definitions. They are all the things we don't want.
Oprah: That we fear...
TS: that we fear. Nobody wakes up in the morning saying that I wish that upon anybody. So, alot of people go well..uh..I'm sorry that happened to you. You know, one mother told me that she had three sons. Two work in big investment banks and the other has a severe intellectual disability and she says every time people ask me about my sons I tell them about my oldest who is in New Your and the second one who is in Chicago and then I tell them about Christoff who lives at home, who I have to get up out of bed every morning and they always say, "I'm sorry". And she said to me, 'Tim, your life's work is to tell people to stop saying that about my son. That boy is the light of my life. and every one thinks that I should be afraid that I should be sorry that I have this boy and he is magic. " So we are afraid of all that and we don't know what to say. If you have a baby, what is the first question you ask a doctor, "is the baby ok?" Sometimes the doctor says, "no, the baby is not ok". and your world goes crashing in. you know,,, what is this child? This child is not healthy , This child is not going to be what everyone thinks he should be...
Oprah: Normal
TS: Normal! The tyranny of that word! is just like a cancer in the culture..normal.Are you normal? Are you fitting in? Are you like everyone else? My God, it is terrifying and yet we all feel that so we come with these (Special Olympic) games expecting to be sad, we come expecting to feel pity, We say thinks like there for the grace of God Go I . People say that to me well intentionally to me all the time.
Oprah; Yup, yup yup...Just a second... Tim is making me cry.. Go ahead
TS: ....So people always say there for the grace of God go I and I always want to say to them ...that pity that fear that embodies I'm healthy and they are not...umm...I think there is strength in vulnerability that only vulnerability knows. I think in some ways the whole special Olympics gamble is is there power in vulnerability and trust and I think the answer in our athletes is that there is on;ly power in vulnerability and trust. The other power is superficial it locks people up, it puts people behind bars social cultural political interpersonal..There is only power in .....you know, I grew up where everybody is on the spotlight that';s where we all wanted to get to that's where you would be successful and what I saw was sometimes when the lights are the brightest people feel the most invisible. I think sometimes where you think you want to go is not where you will find your most heartfelt, most meaningful, most purposeful life..I think ..I looked around and I wanted to be like all those people in the limelight and I found myself happiest at a place where no one wanted to be.
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So as I took 15 minutes to transcribe this piece from the Oprah Super Soul Sunday show, Lucas seemed awfully quiet upstairs in the bedroom. Usually, this is a sign of something no good about to happen but I was inspired. Yes, vulnerability, and trust is strength! Of course! And while I was being so inspired by Timothy Shriver's wise words about disabled people, Luki was upstairs taking his new cloth diaper off and pooping on the clean bedding I changed this morning, on the rug, carpet and stairwell all the while happy as a lark. When I went upstairs to find this mess, everything I just heard on the Oprah interview sounded like a big fat lie and I wanted to shove the poopy rag I used to clean the bedroom down the throat of the person who claims having a cognitively disabled child was magic. It is hard work and today is the first time I had a major meltdown instead of L having one and it entailed lots of yelling, tears, and cursing. Luki knows when someone is upset. He may not know why but he definitely picks up on people's emotions very well. Not only do we both have the flu and are not tons of medicines, but I had just changed all the linens this morning! I am tired, feeling weak, haven't had a proper meal in days due to no appetite from the meds. Some days, Luki has the meltdown and other days, it is me. This journey is hard and we both need to vent our emotions to stay sane and healthy.
What put an end to my pity party was thinking of him being yelled at by someone other than myself like a therapist or caregiver. I wouldn't allow for it. He may experience abuse from others in his future and just imagining it left me feeling so much compassion for him. I wiped my tears as well as his and held him tightly in my arms and apologized and told him how much I love him. He may still not understand that it is not ok to take his diaper off and poop everywhere but that is ok for now. In time, we will get there. This should be reason enough to qualify for Protective supervision under IHSS but while there is always money to wage wars, we are not yet qualified. After about 15 minutes of this he was his happy self again and hungry for lunch. And so we move forward to face another day making mistakes, crying together, wiping each other's tears, apologizing and saying I love you.
This bird took the words right out of my mouth!
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