DEEJ

Next RPM Southtown’s Support Group is Wednesday the 18th at The Comfort Zone Cafe in Hamburg.

I am so invigorated to share!!!

Yesterday we made it to the screening of DEEJ at the Disability Museum on Main Street in Buffalo.

It is the story of one of the first non-speaking autistics to ever graduate from college. DJ Saverese, the protagonist of the film, was there.

PLEASE SEE THIS FILM! 

I got to watch the movies with my three heroes: Jim, Lisa & Philip!

Philip asked DJ via his iPad how he was able to combat his anxiety.  Anxiety is such an issue for many autistics.  DJ answered, “MEDITATION, exercise, and loving yourself.”

WOW! What an inspiration you are to me DJ.  I will continue helping my girl with RPM and I will continue deepening my meditation practice.

It’s just all perfectly connected.

 

 

Mid summer daydreams come true

I heard my first cicada today. Deep summer is soon to set in.

I’m trying to make memories every day for this tribe. I’m trying to pay attention. It will still go by so fast because there is no freezing moments.

Maybe that’s why we all like to take pictures so much. We post.  We invite others in.  “Come & stay awhile in this beautiful moment.  You weren’t here, but I wanted to share it with you!”  Perhaps the pace we are forced to keep with has us all desperate to hold on to time.

Gratitude is a practice I started many years ago when I was newly married and living in a city where I knew very few people.  Keeping a gratitude journal was a thing then and I really loved it.

I try now in earnest to connect with my little family each night and to talk about the things we are grateful for.

I am immensely grateful every day that this is the summer B. and I have begun reading poetry together.  Thanks to RPM this is the summer B. has begun to write poetry.

B. writes poetry.

It’s painstaking still, but it’s happening.

That is a miracle that only the parent or caregiver of a non-speaking child could ever truly understand.

I have known her and valued her through this silent journey, but for her to be able to share gives her a joy I could never buy, beg, borrow, or steal. (Believe me, if it was the hope diamond I would have found a way…)

Each day we show up and we learn and grow together.  With prayer, meditation, and our letter boards.

Her sister is her illustrator.  The collaboration has begun.

Gratitude makes my summers wider, bigger, and more mine. I’m grateful for all of you. Those who are in my daily life supporting me and those of you who I will never meet who are out there walking a similar path.  I promised I’d build you a bridge.  You are why this incredibly private person decided to share.  Your energy buoys me.  A picture can’t hold it, but my heart can.

However…

if there is a picture that could somehow reflect the love and gratitude I have in my heart, on this beautiful summer day, Read More

MORE SOON

Getting together resources for disability parents.  Contemplative practices ARE accessible to you!

 

Also…….

RPM support group coming to the south towns this month!

Good things coming.

Ask

Jim and I celebrated our anniversary a few weeks ago with a beautiful trip to Niagara-On-The-Lake. So it was a delight when my brother watched the girls to let us have a late dinner together on the actual day.

We decided to take a walk down the alleyway where the venue of our reception used to be. The restaurant is no longer there, but this beautiful wall mural still is.

TobiMuralI can tell you it was pretty magical. I felt all the spirits with us in that alleyway. Not ghosts. Guides. We are supported and loved by so many who have crossed over to the other side. For a moment under that crescent moon the veil parted.

They are with us. Nothing is lost. Love continues.

Go to your sacred spaces.  Pray.  They are listening.  Whether you believe in an after life, angels, saints, or a current of light and love in the universe.  Believe that you  have guidance available to you. Love is an energy that exists outside of the confines of time.

Believe that you can ask.

I wish you light,

T.

 

 

 

 

Fire

There is a little woman in Austin, Texas who has the heart of a lion.  She is the strong person who would not quit until she unlocked the gorgeous mind of her son, Tito.  Tito was a non-speaking autistic that had a treasure trove of wisdom locked within him.  His mother Soma developed RPM. (Rapid Prompting Method)

RPM is what gave voice to my daughter.

I believe RPM is to a non-speaking autistic as sign language is to a deaf person.  I believe a letter board is as crucial as a wheelchair.

I know non-speaking autistics are bright people locked inside bodies that won’t obey them.  I know we must respect and celebrate their diversity.

The path to get to these beliefs and knowledge was a 5 year journey.  I am not so pompous or self-congratulatory as to tell you this was easy.  I will tell you that there was an ember inside of me that believed in my daughter.  This ember has gown into a burning fire.  This fire has obliterated doctors, teachers, and therapists who preached a litany of pessimism.

I am an advocate.  I am a mother.

I thank God every day for Soma.

I thank Soma every day for being so brilliant.

I thank my daughter every day for being the strongest person I will ever know. Read More

Finding RPM

We found RPM a little over a year ago.  Philip Reyes is the messenger God used to bring me this good news.  My Uncle Kevin who is one of the most kind people I know handed me a section of our Buffalo News.  “Tobi, the boy who wrote this has autism.  They say he is non-verbal and communicates with a letter board.”

As I read Philip’s words I remembered googling RPM once before.  I had been reading about how many autistics really loved and connected with transcendental meditation. One such young man in a television interview was communicating with his mother through a letter board.  Joey and Roberta Lowenstein  were featured on The David Lynch Foundation web site.

When God knocks on my door sometimes it takes me awhile to answer.  Now He was shaking the windows.  I couldn’t deny that these three letters, “RPM” had flashing red lights attached to them in my soul.

When B. was first diagnosed with autism I would lie on the couch in a panic.  I’d feel like screaming, “She is in trouble!  My baby needs help!  Why aren’t we calling an ambulance????”

Philip Reyes would be our ambulance driver metaphorically speaking.  Instead of a hospital his words would lead us to a school.  Thanks to him and his mother we would find Soma and HALO.

Into The Quiet

Having a loved one who needs care can be filled with noisy, scary moments.  Our loved one may scream or cry with pain, frustration, or confusion. They may use aggression to get their point across.  Unfortunately, one mode of expression that may be lacking is their gratitude.  How do we let go of our need for it?

The big payoff for many things in life is the appreciation we receive in return. We give up so much of ourselves as caregivers and the one thing that we desperately want is to be known by our loved one. If they could know how much we are giving of ourselves it would make the painful sacrifices easier.

Often in Autism, Alzheimers, and Palliative Care this recognition does not come. Our loved one may not be able to turn to us and pour out gratitude for our labor and sacrifice. Sometimes there is wailing or nonsense speak.  Sometimes there is only silence.

The longing for our loved one’s approbation can set us up for depletion. How do we replenish our spirits without an occasional “thank you”, or a smile?

Silence is scary and foreign to many people.  In our modern world its presence is almost extinct.  There is usually noise and most often we create it.

Friends and family may shun our loved one for this very reason. It is too painful for them to be around someone who pays no attention to them, or who doesn’t recognize them any longer. Their reaction is based on how the quiet makes them feel. They are uncomfortable because they have no experience with silence.

Contemplative practices teach us to go deep into the quiet.  We meet stillness and silence and work to stay with them in the present moment.  Fear will come up.  Note it and let it pass.  Anger will well up too.  Note it.  Let it go.  Do not judge any of the emotions that come up in the quiet.  You are more than brave to go there at all.

You are in training on your mat, your cushion, your kneeler, in the woods.  You are training in the silence and learning how to be with it.  Your weapon may be your breath, tree pose, your Rosary, Mala beads, or hiking boots.  Whatever modes of practice speak uniquely to you will become your arsenal.  Your contemplative work is both respite and boot camp for the soldiering of caregiving.

When the quiet comes up in our caregiving we will be prepared for it through our practice.  We can meet our loved one there with compassion.  The quiet will seem less overwhelming because of the work we have done there.  We are fortified and prepared.  Our actions becomes less dependent on recognition when we are able to have them met by silence.  They become sacred by the suffering we are trying to alleviate.

I use the word “trying” because often we cannot make the pain stop.  Our loved one’s suffering continues despite our most valiant efforts.  There might be a thank you trapped inside our loved ones body that doesn’t work. They may be screaming their “I love you” in silence. We may never know.  In this sacred work of caregiving we must recognize and honor our intention.  It matters that we stay with them, beside them in sounds of anguish and also in the silence.

It matters that we try.

meditation3

Lighting the candle

Dear Fellow Caregivers,

We have found each other out here on this path.

We are soldiers of sorts, survivors of many battles, waking up every day to continue the fight.

We fight for something even more precious than the self.  We are fighting for someone we love.

I’m here to share with you.  I want to help.  There are ways of being on this caregiver path that can give you strength.  With this replenishment you will have more to give to those who count on you.

Life has taken us to places we didn’t plan for. These are emotional spaces we truly did not want to see. They can be terrifying and exhausting, but when we survive these challenges the clouds part.  The light returns.

I feel that it is my responsibility to share my story so that it might alleviate the suffering of others.  I truly believe that a contemplative practice can help.

The clouds come back. They always do. Only now, things have changed.   Now it’s different. You’re different.  A contemplative practice creates a reservoir of calm within to draw from during our toughest battles.

Most importantly – you’re still here. I’m still here too. The path is still before us.

If I get ahead of you, I will light a candle.  If I fall behind, please light one for me.  We will remind each other of the beauty of living here in these angles of light.

Most Gratefully,
Tobi