What is this Puzzle Piece about anyway?

I was recently asked what the meaning behind the necklace that I made is.

The necklace in question is this: (And they are for sale - $8 plus S&H )

Historically, the puzzle piece was the logo embraced in 1963 by the British organization now referred to as the National Autistic Society. The original logo included an image of a weeping child in the center.

 

  

The group described this logo as: “The puzzle piece is so effective because it tells us something about autism: our children are handicapped by a puzzling condition; this isolates them from normal human contact and therefore they do not ‘fit in’. The suggestion of a weeping child is a reminder that autistic people do indeed suffer from their handicap.”

Some may find this description very offensive – but contextually I think it is very understandable. At this point when this logo was derived, autism was still not a diagnosis – many of those who had autism were diagnosed as schizophrenic and even more interesting, a very popular theory of “refrigerator mothers” was the prevalent thinking of causation. (Like those poor mothers didn't have enough to worry about! To be blamed on top of it! Ugh) But I digress...

For many of us parents, I think the symbol makes sense – from our perspectives this disorder certainly is complex and varied, with a lot more mystery than clarity.  Again – this is from the parent perspective.  The variance amongst the population with diagnosis is represented by the colors within the puzzle piece. Autism crosses nearly every demographic equally – race, color, creed, country, socio, economic … all but one: gender. Autism prevalence is 4x higher in boys than in girls.  (NOTE: the two colors of blue used are traditionally male associated.)  But the spectrum is just that, unpredictable and varied, at times beautiful with a side of rain – and the colors could represent that as well – autism may make one quirky and skillful or it could make someone speechless and seriously aggravated and every combination in between. 

One day, I hope future generations will look back and laugh – at the fact that we found autism complicated and unknowable, and difficult. We have a lot of work to get there. For now, I can only ask for your understanding and your awareness. I appreciate anyone who is willing to symbolically show that.  When a parent sees this symbol, as they do a knowing smile of support when a child has troubling behavior, it makes them feel less alone. And that means the person they are supporting with autism gets the benefit of a parent who feels encouraged. And I personally know how important encouragement is when sometimes I feel not up for the challenges autism makes me face. So thank you for asking and for willing to wear my simple necklace!

The Mundane and Tedious is still a Life Made Extraordinary

Sometimes analytical looks a lot like pessimistic.  Indeed, if I reflected only on the probability of things instead of the possibility, I would be just that.  In a world where so much is unfair, it's easy to be of the "woe is me" and "people suck" sort.  And there are days ... well, yes there are days.

But indeed there are days - as long as I live to see another day, I see that as the opportunity to change statistics.  Today of course is a good day, so my attitude is a reflection of my feelings.

If there is anything I realize, it's that in the heat of battle, when things are dismal, I need a record of when things aren't to help get me through, to remind me it isn't always bad.

Without people who are exceptional, my attitude would be much different.  What makes for exceptional people?  A lot of people like others who are famous, wealthy, etc. They hope it will either rub off or fall off.  I am always suspicious of such folks, myself.  In such an laborious if not unpopular life as I have, I am blessed with meeting some of the most amazing people on Earth.  People who WITHOUT being asked, or being paid, or being recognized, or earning credit, reach out to us.  These people stun me every time. And because of Zach's autism, we have met way more of these exceptional people than the average person.

Take last night as an extraordinary example.  It was our Thursday night baseball game - through the Syracuse Challengers - a league based in the Little League for kids (and now adults too!) with disabilities.  Some 450 kids get to wear a jersey, grab a bat, feel the dirt under their feet just as any other kid. The concept of this league, let alone the number it serves is just amazing.  Run by families with special needs kids - they have been able to capitalize on the great intentions of ordinary folks to generously donate so that no one is turned away and no one has to pay to play.

But while the concept of the league along is amazing - it provided way more opportunity last evening than just my child's opportunity to play.  Last night, 2 of my son's therapists - who did not know one another, who did not  ask us, nor did we ask, showed up to watch him play.

The one therapist is about to move out of the area and I am sure has plenty to do to get ready. And he is a single young man who could probably find a lot more exciting venues to show up at then the 2 inning no score game of my son's. He included some baseball skills into his therapy with my son. And he even helped him to bat at 2 of his games.

The other therapist brought along her own family - her husband and son, age 1.  Like having a full time job and a family of her own, and a newly walking child doesn't keep her crazy busy!

When I contemplate their attendance, I am blown away; all beliefs of people as being inherently selfish seem to be inaccurate.

And then there is Zach's aide.  She has constantly encouraged me to have Zach do things I would otherwise be too wary of attempting. Things like going to the movies or out to dinner.  We have had so much fun taking on the challenge of bringing Zach to such places knowing she was there as our safety net. And more often than not, he has risen to the occasion. She likely is unaware of how brave she has helped me to be.

And least not are the kids in Zach's class, who when given the opportunity, choose to spend their free time (playtime) to engage with Zach.

These people are the very people that help make me get up in the morning after a night of no sleep when the future is looking fairly dim.  The motivation will always be to help and support Zach, but these people reinforce my efforts, which results in more opportunities and successes for my dear son.  They are the ones who didn't need a special needs child of their own to recognize the needs and supports a family like ours has.  I was not one of these people myself.  I needed Zach to teach me those lessons.  These people are gifts to the rest of us.

I live a very extraordinary life, even if it does involve the mundane or even tedious. Sometimes I actually feel bad for everybody else.

Luke: 23:34 Rewritten

'Father, forgive them; they do not know what they are doing.'

I came across this passage today watching a young black man in Missouri talking about peace.  It made me weep.  And it's been awhile since I have done that.  We haven't been going to church for a bit, not feeling supported enough to get there quite honestly.  I struggle with religion a lot.  But my faith is a different thing.

I have become ever increasingly frustrated with our situation.  People have made remarks that are very ignorant and hurtful that I really though out to know better.  And then a random chance meeting while walking my dog brought me to someone who out of the blue, worked as an aide substitute in our home school district.  She told me of a few children with autism that she had.  She gave such an amazingly interesting perspective of what it was like to be in that situation.  She, without having any intent other than sharing, revealed her thoughts and feelings on the situation.  She is a very intelligent woman, who left her career to raise her 4 beautiful boys.  She signed up to do some subbing and landed in the shoes, on occasion, as an sub aide to special needs students.  For once, I didn't feel crazy as she laid out her concerns before me.  Where was the training? How does this work?  We laughed as I told her as a parent I still would like the answer to those questions for myself! 

Life threw me a bone with this simple connection.  Is that God? I honestly wish I could tell you.  But it is good.  Faith may mean to some believing that something is in control of all this mess.  But for me, Faith means believing that in all this mess, there is still Good.

I have know that people out there just don't know what to do with a child like mine.  It isn't easy!  I have no idea what to do at times.  If anyone ever claims to be an "expert" they just need to be slapped.  There is no expertise in this stuff.  There may be experience and background - but there are no "autism whisperers" out there that can handle every situation. 

In the end I probably need to say more often than not to myself: "Thou who has some sort of omnipresence, forgive me, I don't know what I am doing, but even so, I am going to keep on trying. "Thus began the Goddess of Indomitable Spirit

Shaving Cream Easter Eggs

The eggs are nor prettier.  The process is much messier.  So why do it?  Sensory issues.

My kids are both tactile learners - and the more input they can get sensory wise - the more they understand the experience.  Dyeing eggs is usually more observational - the addition of shaving cream allows for more physical manipulation I think this is a great way to enjoy dyeing eggs!  My thanks to Jeanne Sokolowski for sharing this project on facebook - here's how it worked out in the Morphet Household.

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Age 6: In the Beginning, there was a Snow Globe

What can I say - age 6 has started out with a bang for my beautiful little boy.  While other mothers of 6 year olds are buying Star Wars toys, Legos and going to Little League or local soccer games, we are attending therapy sessions, working on bike riding still, and making sure our little ball of fire has not created an unalterable mess in his general whirlwind curiosity.  Zach has begun to once again get into mischievous trouble here at home.  Here he is covered in powdered sugar, as was erroneously left out on the kitchen counter to make a carrot cake for his dear father's birthday.  I left just for a moment, a mere lapse of time needed to empty one's bladder.  I noticed the eery silence with then sudden erruption of hooping it up.  As I walked in warily to the kitchen, there I discovered my dear boy enjoying his own little snow globe.  I quick grabbed the camera and snapped away.  After taking a few shots, I realized I had witnessed this once before, with his sister,  in a near negative image - the powder was brown as in cocoa, and the dog licking up the powder was black, as in Buddy.  In both circumstances, you know who had to clean the darned mess up and was smart enough to take pictures to remind herself why she deserves a night out with her husband.

Family Feuds

Us folks of kids with special needs are an interesting lot.  I think in particular, those of us privy to the parenting efforts involved with autism are indeed a particular breed of craziness relative to the general public.  No where have I ever seen such a group of people, advocates of the disabled, so ardent in their beliefs that they actually fight reminiscent of the Hatfield and the McCoys.

Nothing Says Happy New Year like a CSE Meeting

The hustle, the bustle, wish-lists, the cookies, the tree, relatives in from out of town, relatives meeting up and toasting, presents are purchased and dispersed, Santa. My worries were set aside, and we actually had a very nice Christmas.

We are so incredibly fortunate that for all of our special circumstances - our kids are very adaptable. Some children at this time of year fret and become anxious. Obsessive tendencies, sensory overload, phobias of men in red suits - these can drive some children on the spectrum into dark places, and leave their parents without the joyous holidays they wished they had. It tears me apart to read stories of people who cannot put up trees or spend time with their extended families because of some of the nuances of their child's autism. One of the things parents want is to reclaim some of their own childhood by doing the things they did with their own children. This is especially true around the holidays. We, for the most part, are able to do that. Zach's food intolerances notwithstanding, we almost had a normal holiday!

Actually, it wasn't normal relative to some of the things I read. There were no fights, no major meltdowns, depressive episodes, wishing it would all go away. This does seem to be the theme of the American holiday, where Martha Stewart wannabes unite and create irritatingly perfect Christmas cookies. Yet, these cookies will not be enjoyed by all - indeed Ms. Stewart doesn't accommodate those outliers - freaks of the gastronomical world - those with food allergies, intolerance, or Celiacs. No room for auto immune disorders in her world. I claim my superiority over her in that I accomdate my guests.