Little Losses

Let me tell you about little losses.

When we were in the throws of the early times… first assessments, first therapies, first fights, and first diagnoses…  many many sad thoughts floated through my mind.   It wasn’t just the “my kid as a disability” crap, although that was most definitely there.  It was the little losses… or potential losses… that seemed to swell up to an unbelievable pitch in my mind.

He couldn’t talk:  Yeah, that sucked.
He wasn’t engaged:  Yeah, not fun.
Meltdowns and Mayhem:  Ugh!
What would the future hold?  Yeah, that question monopolized my brain.

But it was the little losses that seemed to be the most sharp.  At Christmas, he didn’t seem to understand… or maybe care?… about Santa.  Little loss.  He showed no interest in books or (more important to me) having me read to him.  Little loss.  He hated singing, especially anyone singing to him at all.  No “Happy Birthday” songs for him.   No “Wheels on the Bus” on the car rides home.   Little loss.  The sweet little moments that I anticipated would come my way as a parent seemed elusive and unattainable, and for me that was a loss.  A little loss.. but like a paper cut… it still stung.

I tried to just set them aside.  Those moments were not for us, after all.  We are on that different path, and it is still a good path.  It was up to me to see the beauty in this, and spending too much time dwelling on the little losses was futile and counterproductive to building a good relationship with the Amazing J-man.  So I man-ed up and moved on, and tried not to cry when a little loss snuck up on me and bit me on the ass.  It happens, but it does not do to dwell.

But you know what?  I think that many of those little losses are proving to be temporary.

Last week, J-man said to me, clear as day, “Make cookies?”

I was stunned, to say the least.  Not that he said “make cookies”…  but that he wanted to make cookies with me.  Seriously? Be still my mother-loving-heart! I can count on one hand the number of times I have tried to get him engaged in cookie-making, and can honestly say that only once has he even tolerated my “forced” attempt at having one of those moments.  You know, sometimes you just ache for what you know, for the things from your own childhood…

Anyway, I replied back, “You want to make cookies??”

Yes, yes, cookies.

Well, I jumped on this like house-afire!  I actually sent Big Daddy out to the store for chocolate chips as we started making the cookies, because I did not want to lose this moment.  He pulled a chair up to the counter.  He helped measure the dry ingredients.  And the wet ones.  He cracked eggs with me, hand-over-hand.  He even helped with the mixer, one hand on the handle and one hand covering his ears (because it was too loud, of course).  He licked the cookie-dough-and-bacteria-laden beaters (and I didn’t care one bit!!!).  He helped me spoon out cookies onto the cookie sheet.  And he waited for them to bake, looking in the oven a couple of times to see if they were done. And then ate one with gusto.


And two days later, during snack at his program, he told his OT that HE made the cookie he was eating.

Yeah, I know… right?

Now in the car, he has favorite music from the soundtrack to The Lorax.  He lets me sing along.  And he tries to sing too.   He asks for this one by name.

And Sometimes There Are No Dirty Looks

We took a little trip last weekend to visit some friends.  A little weekender to get away, hang out, do nothing special with friends who moved away but with whom we are still close.

Of course, we flew.
Those of you with special needs kids…. or heck, KIDS of all types…. know how nerve wracking traveling with children can be.  The chaos, the lines, the overstimulation… and that effect is just on me!  YIKES. So we planned ahead.  Family security line: check.  First on plane to settle in and avoid standing in a line: check.  Snacks, activities, toys, movies, iPad: check.
A very excited little man: check check.
And he was perfect.   By all standards, he was absolutely perfect.  He sat well, following important directions, was engaged and interested in the experience, able to be distracted and coped beautifully with the overwhelming experience of traveling.  So much so that when we landed, the lady sitting in front of us turned around to speak to me.
At first, I mentally cringed a little.  I feared she was going to complain because J-man had been kicking her chair or something.  He wasn’t, but you know….  reflexively defensive instinct, I suppose.  But instead she complimented him on what a wonderful job he did on the trip, and how well behaved he was.
Uh, what?
Not that J-man wasn’t well behaved.  He was amazing.
But did I just hear someone praise my child on his behavior?  Really?  Did that just happen?

I think I mumbled a surprised “thank you”.

After disembarking, we had a quick potty break where the woman again approached me and repeated her compliment.  I told her that J-man was on the spectrum, so that makes her compliment extra sweet since it is a greater challenge for him than most.  She mentioned she was once a special education teacher and that clearly we are doing something right.   After she left, she apparently found Dan in the hall waiting for us and repeated her compliment to him.

YIKES!

You know, I think that was the first parenting compliment I have ever received.  Or at least, my first compliment from a complete stranger who did not know J-man’s backstory.  I think most special-needs parents get the evil eye because our children do have difficulty in public for a variety of reasons:  overstimulation, difficulty understanding social norms, difficulty communicating, anxiety, and so on.  Our kids tend to have difficulty behaving “as expected”…  as a well behaved neurotypical child  (and note: Not all neurotypical children behave well.  Just saying.).  Anyway, we receive more than our fair share of the Hairy Eyeball.

So to have the opposite.  To get a compliment.  And to know that somebody noticed all of his hard work….  well, it warranted a blog post.

School Daze

And so it begins…

My yin and yang.  My highs and lows.  My dream and nightmare.  All this and more has resulted from a single, crazy, amazing event.J-man got into the “dream” charter school.  For Kindergarten.  This fall.  THIS FALL!

*sob*

Those are tears of joy and dread, people.  Of hope and doubt.  Of confidence and fear.

I am so excited, confused, conflicted, excited… oh wait, I said that already…  well, there you go.  I am a whirl of mixed up emotions.

Of course, my first mistake (or act of utter genius) is that I applied to have J-man enrolled at the “dream” school to begin with.  You see, we didn’t plan on enrolling him in Kindergarten this year.  The plan was to keep him out until he was six.  Give him time to mature, etc etc.  And I still think that is a really, really good plan.  A reallllllllly good plan.

But….  well… for some crazy reason I thought that it couldn’t hurt to apply to go to the “dream” school.  I knew the odds were stacked against us.  There were only a very small number of empty slots (like, 20), and well over 100 applications.  So, you know… the odds of J-man getting in were very small and….

Here we are.

Will he be ready?  Welcomed?  Able to perform in a regular classroom?  How much support will he need?  Can they provide it?  Is this school truly as wonderful as everyone says?

Am I making a giant-ass mistake by even trying this????

And yet, as I waiver to and fro, I see things like this bus…

J-man cut out the bus, windows, and tires independently.  And glued them on independently.  And those were things he couldn’t do a month ago.  So maybe I am worrying needlessly?  Maybe he can do it??

Stay tuned.  The drama is just beginning.

Vacation Post Due

I have been an AWFUL blogger.
Part of it is because I have been working full time, doing advocacy work at the Capitol, preparing for the Highlight It Up Blue for Autism fundraiser/awareness event, sponsored by autism spectrum disorder Australia, and taking care of J-man and Big Daddy.  But hey… I did skip out on the seminar at J-man’s program entitled “Parental Burnout – what you need to know”.  I am working toward being the poster child for parental burnout… I am not sure I need to go to a seminar on it.

The other reason is that J-man and I flew down to Arizona to visit my parents.  It was a long weekend, and there is lots to talk about, and unfortunately… because of the above events this past month… my brain cannot possibly convey the terrible wonderfulness of our trip right now.  So that will have to wait.  Maybe this weekend I can write something coherent… if I am not in a stress-induced coma.

In the meantime, two photos.  One of the oh-so-awesome J-man sporting some serious shades…

… And the next of me, sporting my new blue highlights.  I just want you to know that I hate pictures of myself, but I am sharing it here because of YOU.  I am just that giving.

I promise much more entertaining blogposts in the near future.

Autism, Acceptance, and April

For some people it is a month devoted to building awareness.  For some it is about teaching acceptance.  For others it is about rallying for a ‘cure’.  For others it is about building support.  And for others it is about celebrating autism’s challenges and triumphs.  It is a mixed bag of responses in a divided community, with  some horribly harmful messages (like using the word “hate”)  and beautifully inspiring messages.  It is exhausting and inspiring and frustrating and motivating.

On April 1st, I helped spearhead a fundraiser for a local autism organization that provides supports, information, and activities for the local community.  It is an organization affiliated with the program J-man goes with, and they are small potatoes:  simple events, seminars, and the like.  For example, they are holding an upcoming fundraiser to help a family in the program whose autistic child has cancer.  That is what they do.  They don’t promise a “cure”and aren’t looking to change the world.  They help small groups of people with simple things.  They hold fun events that are sensory friendly and autism accepting.  It is local level advocacy that I can really get behind.

The Ladies from Salon Onyx

Tera of Tera Photography
These amazing photos are hers!

Highlight It Up Blue for Autism was my brainchild:  Get blue hair extensions for the month of April and use your blue hair as an opportunity to talk about autism and what it means for you in your life.  To educate people, to generate discussion, and hopefully affect people in some small way.  My friend Tera and I organized it online.  We got stylists from a local salon (Salon Onyx) to volunteer their time.  We made a Facebook page.  We networked.

The turnout was amazing.  Considering myself and my friend Tera organized it via email and Facebook, we were both stunned at the number of people who showed up to get silly blue hair extensions, make a donation, and meet each other.

Over 160 people stood in line:  mothers, fathers, brothers, sisters, friends, family, autistics and neurotypicals, professionals, teachers and lay-people.  People who want a ‘cure’.  People who believe in neurodiversity.  People who knew very little about autism.  People who live with autism every day of their lives.  People who do every therapy known to man.  People who don’t.  The rainbow of beliefs about autism was represented in those people who stood together in line this one day, who laughed and giggled about getting a silly little blue hair extensions, who had their photo taken, who shared the experience with their friends and family on Facebook.  They all shared one thing, though:

Love

 

 

Love

 

 

Love
 

They may love someone with autism.  They may BE someone with autism, and they love themselves and their friends and family.  They want others to understand it;  they want to understand it themselves.  Some flounder.  Some don’t. But they all LOVE.

This month I devote to loving autism.  I believe in acceptance, insofar as I believe that my boy has a brilliant brain that experiences the world differently and that is okay. His brain needs to learn about the world differently and that is okay.  I believe his path to happiness might be different and that is okay.  I believe he is capable and able and disabled and that is okay.  That is my message this month.  In fact, it is not just okay… it is good.

He is the Amazing J-man.

J-man, I love you.