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.

My Beautiful Boy Turns 5!!!

He's in kindergarten and he is now 5. Wow. How did we get here so fast?

It's 10:23, morning therapy has been cancelled, he's eating potato chips (OK - I admit I had a few myself) and a chocolate chip muffin and we are both still in our pajamas. That is how we roll in this house: birthdays are a day to break from all the requirements and duties of our life. In other words, we are lazy slobs who like junk food.

I spent last evening in tears. If you search around the web, you will read about "windows of opportunity" with autism. These are time periods that have been suggested to be crucial to the outcomes of children who are diagnosed early. The first oft cited window is 0-3 years. The next is 5. SLAM! Game over, right?

Now, let's get one thing straight right off the bat: I am not sad that Zach has only come so far and hasn't become the child I wish him to be. He is exactly who I want him to be - happy and involved. I hope those are the two things that make him feel fulfilled - my ultimate goal. (Thank you Ms. Cutler for your help with me understanding that...)

My tears came from self pity - a frustration with myself: I no longer work, have a graduate level education, have supposedly dedicated myself to my children, and yet I have failed him; his communication skills are extremely behind.

Something in me tells me he is much more capable than his existing skill set. Gut feeling? To a good extent yes. But a gut feeling with some research/science and anecdotal evidence behind it: he has a lot of the requisite skills for speech: his articulation patterns are mostly age appropriate, his receptive language is growing, he has several single words and a few phrases. The issue? He has yet to understand the purpose of language - most likely because I have not put into place the appropriate environment to realize the importance of communication. Without that, the gap will never close, and in fact, it may be growing wider.

Now I want to express to my readers - I do not cry. Well, OK I do - but very rarely. Compared to other women I have experienced - I am really pretty much on the low end of the scale when it comes to tears. The hours of crying last night that I couldn't control was just a shock for me. Why last night?

I guess I am also grieving the fact that he likely doesn't understand what a birthday is. I am in the process of trying to update him on when people ask him how old he is to say "five" and not "four" anymore. This morning my greeting of "Happy Birthday" to him was met with a blank stare. I wonder if the phone will ring with anyone from my family to wish him sentiments for the day. This brings me more sadness. (After I wrote this - Babcia Boulware did call - HURRAY!)

He enjoys birthday parties (see picture at right from birthday #3) - with his favorite part being everyone around the table singing with the candles on the cake. My selfish grief has yet to yield way to me even plan a party. I am hoping this post will help me clear my head to get out of this funk and figure out a way to celebrate the life that is definitely worth celebrating. I am so glad to have Zach in my life, autism or not. Nothing will ever be taken for granted like I see so many others do with those they love. Autism makes you realize that life holds no guarantees, yet it also makes you realize there is plenty of reason to hope.

He is my boy wonder. He has accomplished things that I didn't think he would, yet left other things out there to still be reached. He has helped me to gain insight into others. I have a life with purpose - when I see so many floundering that way - trying to find it in things that likely won't give them the soul satisfaction they are yearning.

My short term goal: figure out a way to celebrate this day for my beautiful boy. My long term goal: I won't cry at the next birthday. Zachary: You are a joy in my life. In a world of power struggles and lies, deceit and selfishness, you find your joy in dancing to a favorite song, swinging on a swing, and chocolate - things that will likely remain unchanged- simple things that so many people ignore.

Happy 5th birthday Zach!