Timothy Shriver, Oprah and the Poop Fest

Here is an excerpt of the interview of Timothy Shriver on Oprah's  Super Soul Sunday promoting his book "Fully Alive".

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!

https://www.facebook.com/Discokidmusic/videos/1114055755301647/

Disability, the Biological Imperative and Memes.

For many people, the sight of a disabled person, be it mental or physical, is an unpleasant experience.  Some thinkers throughout history have believed in euthanasia and the use of eugenics to select out people deemed less fit for survival.  The definition of what was seen as the less desirable traits have been arbitrary and may have included homosexuals, the mentally ill and those with genetic traits for cognitive delays.  Desmond Morris boils down all human behavior to sexual urges. If all human behavior is dictated by an arbitrary biological imperative, then how can we blame people for their "poor" life choices, hatred, fear and cruelty? And, are desirable traits such as love and empathy laudable when we are in fact just machines under the laws of the natural world?
  Richard Dawkins believes  humanity is transcending the dicates of the biological imperative through the transmission of  memes, a culturally desirable piece of information passed on from generation to generation in spite of an overarching biological drive; that is to say, genes are being replaced by memes. If so, caring for the weak instead of ostracizing them; or, doing counter-intuitive things such as loving your hateful neighbor as Jesus taught his disciples makes all the sense. 

So where does Luki fit into these prevailing thoughts?  Rather than a Darwinian view of survival of the fittest, I hope a meme gets transmitted into future generations viewing the disabled not as the weak but desirable people in society who serve as  the glue that keeps people's altruistic tendencies intact - a much needed trait for promoting a peaceful and harmonious society. Seen this way, Luki is a peace bringer who helps society live in peace and harmony - a very important purpose and mission! 

"Pissed Off" - A Reading with Venus Andrecht

This is one "pissed off" lil fella

Luki has been out of sorts on and off for about a month and I can not figure out what is bothering him.  He would have horrible tantrums as if something was greatly irritating him  but being nonverbal he could not let me know what was wrong.  I saw the frustration in his eyes as he cried and pouted but what could I do?  He had no fever and I was hesitant to medicate him for pain if pain was not really his problem.  He would cling to me, try to crawl onto my head and pull my hair all to no avail and no relief for his symptoms.  There were periods when he was calm and seemed ok, but then his tantrums would return.  I was at my wits end and had to do something, but what?  The only available thing for me to do was get in contact with Venus Andrecht (a telepath, clarifying counselor and pychic) and ask for her telepathic ability to look into Luki and find out what was bothering him. The 20 minutes spent with her over the phone was very clarifying, indeed.  I  hope to use the information to help him along better.

This is what transpired in our conversation:

Venus uses her telepathic ability to speak to the higher self of a soul and obtain information for the seeker (in this case, me).  We already know L is a "high being" with an old soul and great psychic and intuitive abilities.  According to Venus, L took on this this lifetime so that he can experience living with a disability.  He has had many lifetimes of learning and spiritual growth and has reached a level of mastery in wisdom and knowledge.  Michelle Whitedove believes he is here to serve humanity (I'm not really sure how, yet). 

Therein lies the problem.  He is so used to quick thinking and being able to do things for himself that being in a disabled frame of mind is very frustrating for him. He is also somewhat spoiled from other lifetimes when he had many servants and disciples who would do things for him and all his needs were always met.  Being in a disabled mind and unable to speak must indeed be a very frustrating experience for him.  But, somehow his soul wanted this experience - perhaps for further soul growth? What are we all trying to "grow" into?  Who can say? Some explanations can be found here. And somehow, my own soul wanted this experience, too!  I have much to discuss with God about why I chose to do so.

When asked to look through L's eyes into the world, Venus said she saw the world not as we see it but like a kaleidoscope of colors and shapes that don't always make sense.  When listening through his ears, Venus said everything sounded jumbled up and like a  whole lot of incoherent mumbles.  This may explain why he has a hard time taking commands and responding to his name when called.  She also mentioned he may have synesthesia(?)  which I need to do more research on.  I gather it has something to do with the senses being mixed up and sensory input being processed incorrectly.

Venus also asked if L had any allergies because she sensed him being itchy.  He was so bothered by whatever this was that when asked what was wrong, he would respond that he is "pissed off"!  I was surprised that a wise old sage soul would use those words, who knew? Ha!  Where did he get the words "pissed off" into his little head?  I had to laugh at this unexpected response and now I am hoping his first verbal words would be "pissed off'!  That would be a hoot!  Gabriel thinks he is picking up on my lingo and I need to clean up my potty mouth from now on and stop saying the F word and shit. I don't think I say it very often but Gabe thinks I do.  I wish I could be more like him...I don't know how he does it. 

Our phone conversation was disconnected two times during the reading. I have never had such a thing happen with my phone before and was very apologetic to Venus for the disconnection and explained that I am not hanging up on her on purpose.  I had intended to audio record our conversation but nothing got recorded and it felt like all my electrical equipment at hand just stopped working which I am pretty bummed about. Venus said that this is a reflection of what is going on with L.  Not getting heard, not being able to communicate, getting disconnected are all symptomatic of how L is feeling.  Maybe he is trying to let me know first hand the frustrations he is having.  When Venus explained the situation with the phone to L's soul, he responded by saying, "oh, isn't that so typical"!  Ha! Not only do I potentially have a wise old soul with a potty mouth, but also cynical, too! Ha!  I can't wait to "meet" L! 
 
Venus telepathically counseled L to use more of his  intuitive/psychic abilities to navigate the world and get his needs met since he is limited in doing so through the senses.  She suggested I give him some calming medications that are safe, perhaps herbal... Venus shared my session and testimonial at the beginning of her weekly radio show, The Dear Venus Show. You can listen to it by clicking on the hyperlink.  It is archived in her February 10, 2016 show.  My story is in the beginning and is titled "Living with a High Being".

After speaking with Venus and getting her intuitive insights into the situation, I am led to believe that perhaps it's his diapers that is the problem.  I noticed a small rash on the side hip where the elastic velcro of his diaper is  located.  Maybe the allergy and rash she was referring to his the discomfort of having to wear diapers.  I know I would be in a crappy mood if I had to wear hot wet diapers all day long.  I have decided to invest in cloth diapers and see if his tantrums are reduced.  From recommendations I received from other Dup15q moms, I have purchased a set from a company called Mother Ease and another from a company called The Willow Store.  The latter is a family owned company who has a child with Down Syndromes.    I am going to find out if the Medi Cal waiver will cover cloth diapers and if our medical reimbursement account will also accept it as a medical necessity. 

We haven't started on the cloth diapers, yet but L hasn't had a tantum since the reading.  He is back to his calm and loving self.  I reassured him that I am going to 'fix" his problem and to be patient with me.  I feel he really understands and is grateful for my efforts.  I can't wait for the cloth diapers to arrive. 

Bite mark from L.  He didn't want to walk to school.

He bites his finger out of frustration

Update:  Venus shared a fascinating article  (click here) about how best to communicate with babies. Will definitely be trying it out.

THE PURPOSE

The purpose of our Spiritual journey is to become better human beings. But to become more compassionate, loving, and kind human beings we must come to know our own nature; the nature of our own minds. 

We cannot become more loving, more compassionate or more forgiving if we do not understand why we are not. We must delve into our mind, not at the lower intellectual level, but into our higher level of consciousness to garner true understanding. 

In understanding that the energy of anger arises from within us, from within the nature of our own mind, we can resolve it; We can transform that negative energy into the positive energy of wisdom. It is that wisdom that allows us to better ourselves as humans.

All negative energies we experience; such as anger, jealousy, hatred, aversion, fear, and resentment are products of our mind; and once we realize that we are able to resolve and transform them. If we don’t understand the true causes of our negative thoughts, emotions and actions we will just keep causing ourselves the same sufferings over and over again. 

Only through the slow process of coming to know our own nature, can we transform it and become better human beings. 

Walk your path slowly and mindfully. Meaningful change takes time. 

~ Delores ~

Pathways To Oneness: Spiritual Energy Therapies and Guidance

Luki Tries to Make Friends for the First Time.

Yesterday, we spent a lovely Saturday morning trying out a new cafe on Thrid Street called Toast Bakery Cafe.  We have driven past these shi shi looking cafes in the past and vowed to try them out one of these days but never really got around to it.  A whiff of beautiful fragrant teas made a very good first impression of the establishment and the food that followed was even better.  Gabe and I tried the dip sampler for breakfast which was an assortment of the bakery's favorite dips served with their rolls and toasts. It was something new and different.  We will definitely be going back.

For lunch, we went to Luki's favorite kid's restaurant, Lemontree Kid's Cafe where we celebrated his fourth birthday.  Since we have been coming here for over 2 years, Luki is well aware of the restaurant's layout and enjoys the mini Merry Go Round, Choo choo train, slide and ball pit.  We noticed him doing two new things this time.  First, he is now crawling around the ball pit on his elbows in an army style and can go around the pit several times enjoying himself immensely.  Gabe calls it his amphibeous army crawl.  The second and more important thing I noticed was he was actually trying to make friends!!

I noticed him watching all the children running around lauging and being silly and it looked like he was really trying to get involved in what they were doing or at least analyzing their behaviour.  At one point, he approached a little girl around 2 or 3 years old and another boy of same age.  I hadn't noticed, but Gabe said he was pulling on the girl's hair.  All I noticed was him tapping their backs and trying to give them hugs.  The two kids did not appreciate Luki's advances and the girl proceeded to push Luki away.  Luki approached them again and again and every time, the little girl and boy took turns pushing him away harder and harder until he fell flat on his bottom.  Gabe finally went to the rescue and scooped Luki out of the play area and fortunately, Luki didn't seem to understand the rejection he just experienced.  I witnessed all this unfolding before my eyes transfixed on what was happening unable to move or take my eyes off the scene.  I should have been the first one to intervene but I was waiting to see how Luki would react to the rejection, whether he would be angry or sad and start to cry.  Fortunately, he was clueless and when redirected to the ball pit, carried on with his army crawl happy as can be.  I, on the other hand, was becoming an emotional mess inside and felt my heart sink to the ground. 

I just witnessed Luki trying to make "friends" for the first time and get rejected in the meanest way. I felt so bad for him and wondered if he would every make any friends in the future.  It was so hard to watch his innocent first gestures be minsunderstood by other children.  Will any child ever take the time to understand him?

 

Thoughts on Marie's Story .

Courtesy of Wikipedia:
Marie’s Story (French: Marie Heurtin) is a 2014 French biographical film directed by Jean-Pierre Améris and written by Améris and Philippe Blasband. It is based on the true story of Marie Heurtin (1885-1921)—a girl who was born deaf and blind in late 19th century France.

In 1897, 14-year-old Marie Heurtin, the daughter of a humble artisan and his wife is born deaf and blind and unable to communicate with the world around her. Desperate to find a connection with Marie and avoid sending her to an asylum, the Heurtins send her to the Larnay Institute in central France, where an order of Catholic nuns manage a school for deaf girls. There, the idealistic Sister Marguerite sees in Marie a unique potential and, despite her Mother Superior's skepticism, vows to bring the wild girl out of the darkness into which she was born.

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What made this movie so emotional to watch was the looming death of Sister Margarite from a fatal respiratory illness. Just as Marie is rescued from her dark world with the help of Sister Margarite and taught sign language through touch, we learn that due to a respiratory illness (tuberculosis?) Sister Margarite will soon die.  Throughout the whole movie, all I kept thinking about was that moment when they will have to say goodbye on a death bed and it made me cry from beginning to end.  

And I thought of Luki in every scene.  How will our parting be when faced with death? Who will go first?  How can I ever say goodbye to someone who needs me so much?  Who will take my place?    Who lives and who dies, when, where, how  is not up to me but God. After my death, whether Luki should suffer or be well taken care of...  is that not up to me, either?  Am I  not responsible for his care after my death and should I be making plans? Or are my plans laughable in God's eyes? 

There are fates worse than death but this issue touches deeply into my heart. Only another mother with a disabled child would fully understand the feeling.  My own mortality was the first thing that went though my mind immediately after I received L's diagnosis 2 years ago and it is still the one thing that brings me to tears and saddens me the most.  And, it doesn't help that last year there were two deaths related to Dup15q Syndrome and many more die early every year.  

It gives me hope  that people like Sister Margarite exists!  What loving souls here to help people and love God!  My fears and sadness were somehow alleviated by a quiet inner voice telling me that L will be alright because there will always be loving people like Sister Margarite in this world.  God will make sure to send such souls into the world to do His work.  This is the truth I hold onto. I declare it to the universe: Luki will always be well taken care of!  And so it is!  Praise be to God!