Blog-a-thon Day 9

Kyle has been rising extra early the last few days. 4:30 AM. He is joyful and ready to begin the day, even if I am not. I don't really have a choice. This morning it sounded as if he was building something in the workout room next to his bedroom. I think it was his way of calling me to fix his breakfast.

Given my 4:30 AM wake up time, my brain feels like a bowl of mashed potatoes today. I'm guessing some of you can relate.

A lot of people have commented on my first two posts about my brother Philip. The things I shared were news to even my closest friends. This is because the focus has been more on my son, Kyle, than my brother.

Autism awareness. It's great to realize how far we have come as a society from the days when you felt you had to hide your child and were reluctant to share with anyone. Today everything is out in the open with an entire month dedicated to autism awareness. Who would have imagined this would happen back in the 60's and even the 70's?

I think it's good for people to be aware that there is a full range of people on the autism spectrum. There are adults whose autism is not very apparent and might even be missed in conversation. These people may have IQ's on the genius end but struggle with relationships. Relationships impact everything from employment to friendships to quality of life. Then there are adults like my brother and my son whose autism is more apparent and comes as a part of a larger package of challenges.

Awareness. Awareness of autism and the different ways it affects people. Awareness of autism and the way it affects parents. While my mother crumbled under the weight of it, I believe I have risen above the weight of it. It has not been easy.

I share my experiences through this blog to support others and also spread awareness. Sometimes my readers share back. A few weeks ago when I posted the video about Carly, who communicates through typing, I shared honestly my reaction to it. See my “Happy, Sad, Inspired, Guilty” post.

In response, one of my readers shared her experiences and feelings too.

I know my son is very low functioning at this point and he has his moments but he is mostly a peaceful and smiley little guy.  He has odd and obvious movements that sometimes draw stares and when I notice people watching him (probably more out of fear and annoyance rather than curiosity), I can't help but wonder why they are so afraid and bothered.  I've seen other kids at Target or wherever louder and running down aisles and no one gives them a glance but for some reason just because they don't understand the loud squeals and the jibberish or his odd hand movement they look at him almost like he is a scary monster.  And I used to get so angry about it, but now I just flash Ash a smile and give him a big hug in front of everyone because he needs no "superpowers" to win me over.  He has given ME the superpower to forget the world around me and the ability to weed out the shallow people.  I feel proud to have been chosen to be the mom of a special needs child. I, like you, hope that someday our autistic public that function on the lower side of the spectrum with no special talents or ability to "mirror" the general public get the dignity they deserve too.  Thanks for standing up for them and for being a great role model for all the caretakers out there.  Our job is IMPORTANT!  We are in charge of lives without voices and fend off judgment daily.  That is a hard and important job.  Thanks for taking care of the people who give care.

Blog-a-thon Day 8

I hope you all had a nice Easter/Passover weekend. Eating a sandwich on matza brought back all kinds of childhood memories. I do not follow the Passover dietary observances, per se, but do believe matza with butter can be a religious experience.

I got to hike over the weekend and it was heavenly. Well, for the most part. On Friday, Neil and I did an unexpectedly long hike to Tom's Thumb in Scottdale, Arizona. I had never been there and was delighted to discover such a wonderful place exists just a 25 minute drive from us.

Yesterday, I did a short hike on the mountain I frequent next to our house. As most of you know from my books and blogs, hiking is one of my prime "oxygen-rich tools for loving and living well with autism" AND life. It was a gorgeous spring weekend here in Phoenix, Arizona.  I was looking forward to enjoying my deep breaths atop the mountain. There is a  saddle which is often shaded where I love to sit and take in the 360 degree view and contemplate life. I even have a certain rock configuration I gravitate to when available.

Yesterday, I sat down right about the time another gal sat just about 4 feet away from me. I would have preferred to be alone but was ok with sharing my mountain space. Within a minute or two, she lit up a cigarette. I had never seen anyone perform the required exertion to climb up to that point and then actually smoke so I was a little surprised. It's probably been done, but I have not seen it in the 14 years I have been hiking there.

Pretty quickly, my nice peaceful spot and beautiful air was being polluted. And pretty quickly, I got rather irritated and decided to leave. I had not intended to say anything, but found a few words (no, not four letter ones) slipping out as I passed her.

I did my internal huffing and puffing most of  the way down and low and behold, the hike was much less enjoyable than usual. In fact, the downhill walk is where I usually feel the endorphins pouring in, and most of what I felt was irritation. I managed to ruin the rest of the hike for myself. She was perfectly fine enjoying the rest of her cigarette. I was hanging on and feeling grumpy and "wronged".  I even got to relive the experience by sharing it with Neil when I got home.

And the moral of the story is... we are never done with spring cleaning or letting go. It is a life-long practice. I pride myself on having let go of some pretty big stuff. But lest I get too cocky, there's plenty of stuff left to show me I'm still human and I still hang on to things which do not serve me.

I'm very grateful for the awareness. That's where the growth lies.

Awareness is a gift!

Almost to the thumb

I found this poem in a folder marked "INSPIRATION" while cleaning out a drawer. The lingo is not polictically correct by today's standards but the sentiments are right on.

                                                                                                              (Author Unknown)

I am the child who cannot talk.
You often pity me, I see it in your eyes.
You wonder how much I am aware of -- I see that as well.
I am aware of much, whether you are happy or sad or fearful,
patient or impatient, full of love and desire,
or if you are just doing your duty by me.
I marvel at your frustration, knowing mine to be far greater,
for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times.
I do not gift you with clever conversation, cute remarks to be laughed over and repeated.
I do not give you answers to your everyday questions,
responses over my well-being, sharing my needs,
or comments about the world about me.

I do not give you rewards as defined by the world's standards -- great strides in
development that you can credit yourself;
  I do not give you understanding as you know it.
What I give you is so much more valuable -- I give you instead opportunities.
Opportunities to discover the depth of your character, not mine;
the depth of your love, your commitment, your patience, your abilities;
the opportunity to explore your spirit more deeply than you imagined possible.
I drive you further than you would ever go on your own, working harder,
seeking answers to your many questions with no answers.
I am the child who cannot talk.

I am the child who cannot walk.
The world seems to pass me by.
You see the longing in my eyes to get out of this chair, to run and play like other children.
There is much you take for granted.
I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.
I am dependent on you in these ways.
My gift to you is to make you more aware of your great fortune,
your healthy back and legs, your ability to do for yourself.
Sometimes people appear not to notice me; I always notice them.
I feel not so much envy as desire, desire to stand upright,
to put one foot in front of the other, to be independent.
I give you awareness.
I am the child who cannot walk.

I am the child who is mentally impaired.
I don't learn easily, if you judge me by the world's measuring stick,
what I do know is infinite joy in simple things.
I am not burdened as you are with the strife's and conflicts of a more complicated life.
My gift to you is to grant you the freedom to enjoy things as a child,
to teach you how much your arms around me mean, to give you love.
I give you the gift of simplicity.
I am the child who is mentally impaired.

I am the disabled child.
I am your teacher. If you allow me,
I will teach you what is really important in life.
I will give you and teach you unconditional love.
I gift you with my innocent trust, my dependency upon you.
I teach you about how precious this life is and about not taking things for granted.
I teach you about forgetting your own needs and desires and dreams.
I teach you giving.
Most of all I teach you hope and faith.
I am the disabled child.