Today I gave a presentation about epilepsy awareness and safety.  I had a very receptive audience of women most of whom worked with people who had a disability, or who had children with disabilities.  Many of the women who attended had some expirence with people who had epilepsy. 

Having worked last night I was over tired which mixed well with nervous. I  became hyper and giddy.  It went well that way though. On the elaluation sheets some people discribed me as being funny or entertaining.  I might as well take that as a compliment.  

Today was the Imagine Walk and family fun Day at Goddard Park.  It raises money and equally as importantly, awareness for Project Autism.  My aunt and I had the pleasure of joining thousands of others from all walks of life in this great accomplishment. It is truly a wonderful thing to see so many people come out on a dreary Sunday morning to show they care about people whose lives are affected by autism. 

There were activities for children, characters such as Elmo, Buzz Light Year and the mascot to the University of RI's sports teams ( a ram) walking around and happily greeting people of all ages.  There was a horse ride, bouncy house for children to jump on, a petting zoo. 

This was my first year at the walk and I hope to attend again. I highly recommend that anyone who is able to attend such gatherings for important causes in their area do so.  If you can not attend you could donate , or simply spread the word about causes dear to yourself.  There are so many causes and so many people in need in our world today.  In the spirit of this web site I also point out there there are so many disabilities that need attention.

I ramble.  But I also reflect on how important it is to help our fellow human beings as we travel through life.

POETRY:

I walked today.

Only about a mile.

Not so far for me.

But when thousands walk the mile.

Or wheel through the mile.

Or ride a stroller that mile.

Much gets accomplished.

One person makes a difference.

By many together make a greater difference.

Let's all walk together

Lets all make a difference 

Reflection:

What can you do, or what do you do to make a difference?

Thanks for reading my blog!

Because I have epilepsy it is not obvious that I have a disability.  At least it isn't so long as I do not have a seizure in front of my employer.  This gives me the much debated choice.  Do I tell my boss or not?  I already told her I was not comfortable walking her mother down the stairs because my balance is very bad (a side effect of my medications)and if I fall I do not want to take her 95 year old mother with me. She was very understanding and while I carry Doris' walker downstairs Marsha takes Doris down the stairs gait belt and all.

Perhaps I am afraid of rejection, or of being treated like a child because of my epilepsy.  Ideally people should treat people with understanding and respect with or without a disability.  Ok, that's obvious.  -at least it ought to be but in many societies and cultures since the beginning of recorded history it was not.  And some people still don't get it. 

Anyway, that is a different topic all together.  Some say you better tell your boss, others, No it's your right to say nothing.  And I wonder am I ashamed to say something?  Just afraid that rejections from the past will repeat.  I'll be left jobless, with low self esteem from rejection.  One question with many angles.  TO Disclose or not to Disclose?

This past week my friend with whom I graduated college came to visit me.  She has Cerebral Palsy and is in a wheel chair. We both had a great time and using the ride bus and some taxis got around Providence quite well.  (Though we never did make it to Wal Mart).

I found that most people were helpful and well meaning.  It would be no surprise to anyone with a disability that some people are just not sure how to respond to people who have a disability.   I thought I share just a few other observations.       

I watched how the man in one of the shops was speaking directly to me as I stood behind Christy, even though it was she who asked the question and needed no help in explaining herself or comprehending his words. 

I watched too as the bus drivers assumed that Christy was the one who had the ride program and that I was her attendant.

I watched as the man in the museum let one of us in for free. 

When I met a deaf woman on the bus, I did use to what little ASL I know.  I looked at her, annunciated and SHOUTED MY WORDS!

POETRY:

Disabled people don't do things the wrong way

just a different way

their experiences may be different

and thus their insights

they have different frustrations

and different triumphs

but disability is a long word

its inclusiveness is broad

perhaps those with perfect health and perfect ability                                                                 

are the ones missing out

on something

to unique to explain

Question:  How have you found society treats you when they discover you have a disability?  (Feel free to respond)

  Thanks for reading my blog!

ANDREW:

I wish I could read his mind

He laughs but does not speak

or sign, or point to a card

He cries when I don't know why

what do I know? 

But he reaches out to my hand

and I see a smile 

I rub his back

I think he likes that

What future will he have?

I wonder

But for now I just love

and assist to the best of my ability

and

selfishly perhaps,

I wish I could read his mind

 What are the greatest joys, and what are the most challenging things when it comes to working with or raising autistic children?

I volunteer with a SPRED Group.  Spred stands for special Religious Education.  In the group[ I work with we have 4 autistic children.  We meet we the children every other week.  The program its self includes people of all developmental disabilities and goes into adulthood.  I like working with the younger group, which is what I happened to be asked to do about 3 or 4 years ago.  When I took interest little did I know what a  challenging and rewarding journey I was about to embark on.

I also help by babysitting and assisting  one of the families with everyday activities.  While I will be the first to admit these children come with their challenges they are also beautiful children of God and deserve to be treated as such. 

Every 20 minutes a child is diagnosed with autism. 

To learn more about autism  go to theautismproject.org

If you live in the RI area please join us for the Imagine Walk and Family Fun Day on April 27. Registration begins at 9:00 Goddard Park.

I found out only recently that I qualify for the RIDE bus.  That is the bus program I can call up 24 hours in advance and get a ride in a small bus or taxi anywhere in Rhode Island. ($3 each way) I had to fill out paper work and so did my neurologist.  It is amazing how this service has helped my self esteem among other things.  It has given me a  freedom and reminded me that I am a capable adult with the same rights as others.  I should not let my disability hold me back as much as I often do.

POETRY:

THANKS RIPTA

Thanks Rhode Island Public Transit Authority

God allowed me epilepsy

you allowed me a freedom I'd nearly forgotten

Thanks to my family who often give me rides

but somehow riding as an adult on the disability bus makes me feel more normal

It may not make any sense unless you live in my head

Thank you God for RIPTA  

Question:  Does anyone else out there find taking the disability bus in their area has been a new found freedom?