Saturday, April 28, 2012

Special Needs Ryan Gosling

Last week was crazy and I didn't have time to find a new way to put together an SN Ryan Gosling meme when picnik shut down.  This week was equally nutty but it's nice to be home right now and know that I don't have to rush anywhere for an entire weekend.  My previous post was about how my son gave a bratty girl a well-deserved finger and I didn't care.  Now he thinks giving the finger is funny so while I'm not rushing anywhere this weekend, I'll be working on that so that I can take him out in public again. 

Thank you Sunday Stilwell for keeping the SN Ryan Gosling meme going.  Click on the Extreme Parenthood button to the right to create your own meme or to see some very funny memes created by fellow SN parents -- or just to read a great blog.

Happy weekend everyone!

Thursday, April 26, 2012

Stick to the Script

When James started learning to label things, we thought we made it through autism.  “He’s talking!  He knows that everything he sees has a word!”

We soon learned that language was more complicated than that, particularly when it came to conversational language.  That’s when James can’t pull the pieces together and will rely on phrases he hears on TV. 

At age 8, James can now engage in a rudimentary conversation but if the discussion becomes more nuanced, he opens the file cabinet in his head filled with super hero, commercial, and movie scripts.

James is also at an age where kids immediately zero in on the fact that he is different, and it can be painful to watch.  He doesn’t notice their looks or understand their snide comments, but I have enough hurt when I see it happen for both of us.

I find that boys can be a little more forgiving especially if there are electronics involved.  Girls can be another story.  They are quicker to notice that James is not like other kids and they will begin exchanging looks with each other the minute he opens his mouth.

Over the weekend, James and I were on line at Walgreen's.  A girl was standing in front of James and he tried to talk with her. 

My heart always stops beating when I see James try to initiate something with another child.  I worry that his bright eyes will turn to disappointment and a little glad that he’s not related enough to figure out that he’s being rejected.

James tried to have his version of a conversation with the girl and she kept rolling her eyes until she snapped, "You're weird!"

I don’t know why, but this time it registered with James that she wasn't being nice.  He didn’t have his own words to respond to her so he went to his file cabinet and looked right at her, gave her the finger, and said, “Don't make me say it too!”

The girl's eyes bulged out in indignation and she shot a look to her entitled mother who looked at James and then at me.  I could tell she was waiting for me to reprimand James, but I felt like my son gave it back to every snotty girl today and tomorrow. 

I just stood there with a blank expression holding my 2-liter bottle of soda.  Inside, I was screaming, "That’s what you get you little goddamn shit!” 

I was also trying to figure out where James heard it - it couldn't have been Cartoon Network.  Maybe at school?  Maybe a movie?  I didn't know and I really didn't care.

Fortunately, the mother didn't say anything to me because I don't know where the discussion would have gone.  She turned away with a tightlipped, annoyed look on her face and went to the register to pay.  I could see her looking at the girl (all of 18 years old) behind the cash register trying to get a nod of understanding from her.  

When I got home, I waited until James was in his room to tell my husband.  "Guess what James said to some little bitchy girl!"  Donald’s face lit up.  "Good!" 

Then together we tried to figure out where the script came from - because if it's from a movie, we definitely want to see it and re-live the moment again.

Thursday, April 19, 2012

Oh Lord

My son, James, was seven years old when I first took him into a church.  Up until then, he couldn’t tolerate loud music and large crowds so I was skeptical about how it would all play out.

Last year, however, a new woman was hired to run the Sunday school program and my eagle SN mom eyes noticed that her son was a lot like James. 
She seemed very approachable so I spoke with her one morning about James.  She was lovely and assuring and I felt like I hit the holy jackpot.

It was very important to me that James go to church – for two reasons.
First, it was a gift for me that I just wanted. 

Since James was a toddler, it’s been a never ending special needs ride … watching Team James parade in and out of my living room, making every moment teachable, finding an appropriate school setting, finding another appropriate school setting when the first didn’t work out, feeling lonely and isolated, and berating myself about not trusting my gut when I knew something was wrong. 
I am tired and I want my slice of the normal pie.  This is my payback.   I want to walk into church with my son.  Or as I put it to my husband, “After all I’ve done, his butt is coming to church.” 

Second, God is my plan D.
You see, Plan A was that James would be born typical.  Plan B was that all of this therapy would help James pop out of autism.  Plan C is my teenage niece who has no idea that I have set my sites on her as my son’s overseer.  Plan D is the man upstairs.

We still don’t know exactly where James will end up in life.  Will he be "all better” (there is still a piece of me that holds onto this plan)?  Will he live in a group home with nice people and my niece will check in on him?  Is there another scenario?
What we do know is that at some point my husband and I will be gone and James will be without us and he needs to have the feeling that there is someone else, something else that is there for him – that mommy and daddy are in heaven and love him and that he is always loved.

I’m not sure that he’ll be able to grasp all of that, but if I start to plant the seeds now, maybe that little piece of heaven will live inside of him and give him some relief and a feeling of love, security, and hope.
Donald and I have been seeing a special needs financial planner to begin looking at James’s future.   I realize that I can find someone to manage a special needs trust.  I can even pay someone if need be. 

But who will take care of James’s soul and make sure he has the strength to believe in himself and in humanity?   
A financial planner would probably tell me that it’s not prudent to rely on divine intervention, but my son is special – in so many ways.  He’s going to need help that I may not even be able to anticipate right now, so I have to bring in the big guns because I’m running out of letters in the alphabet. 

So that’s my plan and I’m sticking to it.  Amen.

Thursday, April 12, 2012

Holy Cow

My Easter weekend began with grand plans for three days of holy immersion.  I was going to take off work on Good Friday and attend the entire three-hour service, go to the Easter Vigil mass on Saturday evening, and then attend Sunday mass with my son.  A religious trifecta.

Yes, I was primed to be in the God zone. Who needs Christmas with all its gifts, tips, and materialism to mark the birth of our Lord?   Easter is the real McCoy – not a birth, which anyone can do, but a resurrection complete with dark chocolate and pretty colored eggs that don’t break my budget. 
Instead, I found myself missing Good Friday mass, breaking Lent (no alcohol) one day early, hiding out at a movie theatre to avoid my family, getting hit by my son before dragging him off to church, screaming at the top of my lungs, and missing half of Easter mass.   A special needs trifecta times two.

I can’t pinpoint where it all went wrong – an unaccommodating job, an uncooperative son, and an uninformed husband who didn’t catch on that my sanity was contingent on my plans.   
By the time Sunday arrived and I got James to church, I was harried and ready to cry again.  A well-meaning older woman (aka a “church lady”) sitting next to us opened her purse and took out a perfectly sharpened pencil and smiled sweetly as she gave it to James. 

I thanked her and whispered to James to thank her too.  He dutifully said, “thank you,” and then said to me, “what’s this for?”  I explained that she gave it to him so he could draw a picture. 

“Because she’s being nice.  Now draw something!” 
James drew a stick figure on his program and then said, “Can I give it back to her now?” 

“No, draw some more!”  I felt like the church lady I never met saw the look on my face and wanted to help salvage my weekend, and I wanted to honor her gesture. 
When I returned to work on Monday, I was trying to figure out what it all meant.  After all the drama, why wasn’t I still upset that my holy weekend was devoid of the main ingredient?   I had no anger.  I wasn’t even that surprised. 

I realized that this must be my new normal.  I’ve accepted it.  I’m not fighting it anymore.  It is what it is. 
But I couldn’t decide if it is a good thing that I’ve shed all expectations or a sad thing that I’ve resigned myself to the uncertainty and drama that has become my life.
When I looked at the highlights of the weekend, it was the church lady with the pencil, the movie I escaped to see (I think I need to do more of that), that broken Lent bourbon (I definitely need to do more of that!), and reading tweets by special needs parents who were having wacky Easter weekends too. 

They were all things I didn’t plan on, so maybe I’ll let the unexpected be my new normal – because, Holy Cow, I know what to expect when I make plans.

Friday, April 6, 2012

Special Needs Ryan Gosling #5

That Ryan.  He really "gets" my little guy.  I think I'll keep him.

This has been a crazy week, but the minute I had some downtime I had to make sure I submitted my Special Needs Ryan Gosling meme. Click on the Extreme Parenthood button on the right if you want to create one of your own or see some hilarious Ryan Gosling memes created by other bloggers.  While you're at it, thank Sunday Stilwell, Extreme Parenthood blogger and SN RG mastermind. 

This week was so busy that I posted one of my first blog posts (since I'm sure no one ever read it).  It's called "The Other Woman" and you all know her.

Thursday, April 5, 2012

The Other Woman

The second video clip on the iphone ends and my friend anxiously finds the third.  “Here he is when the nanny comes in.  See how he looks up and hugs himself as soon as he sees her?  That’s because they play the ‘I love you’ game.  That’s a good sign right??? 

The lighting in our diner booth is low and I squint to look once more, and then smile and nod

“So what do you think?” she asks? 

“He looks great,” I repeat.

“But too soon to know for sure, right?” 

“Well, you know I’m not a doctor…”

And so goes the dialogue every few weeks as my friend shows me videos of her son sitting on the floor or in a chair, looking up, looking down, reaching out, playing with a toy - looking for assurance that her little guy is “normal” to her - “typically developing” to me. 

My son, now 8, has autism spectrum disorder, but my friend knows how I feel about labels.  I think of James as “an amazing kid” because it’s who he is first and foremost.  She admires me for that.

My friend and I met when James was four so she never knew me through my initial angst, my pain, my guilt, my denial, and my confusion as we circled the big “A” diagnosis starting when he was 18 months. 

She didn’t watch me begin the journey, so she only knows the together woman who takes it all in her stride and doesn’t believe in labels. 

I’ve never let her know that I’m not completely that woman either.  I knew she was planning a family and let her know the woman she needed to know.  The woman who had it all together – nothing phases her – not even autism.

So, sitting at our usual table watching her nervously search for the third video clip, I felt like I failed at being the other woman I wanted her to know. 

After being such a shining example of togetherness, I wanted to shout, “Why do you think it would be so awful to have a son like mine!”  And, more so, “How could you have no inkling of how insulting this conversation to me?!” 

But I knew the latter was my fault.  How could she know?

Of course, I didn’t say anything like that. 

A few weeks ago, her son was 19 months old and we got together.  She had her videos and a few photos.  We looked, we talked.  He passed the “markers” according to her doctor.  She was happy.  She made it through!  “Whew!” 

When we said good bye, she looked so relieved, even serene.  She seemed to float as she walked away.  I smiled, remembering that carefree stride from long ago.  I was happy for her but also sad for her and mad at myself. 

Mad because maybe I really didn’t do my job as a friend.  I made it look so easy and, of course, she knows she can’t be that person if it happened to her.  I wasn’t.  

And sad that she feels so safe because she escaped the “big A” and can’t imagine that anything could be worse.  Sad that her big escape doesn’t mean anything and that there are no guarantees that we get off scot free. 

I wish it didn’t scare her so much to become me.  I wish I could tell her that some day she may hurt and it will be okay. I wish I could shield her from the heartbreak that can strike at any time and change all the rules and twist all the dreams. 

I wish I could meet and have coffee with that woman I used to be.  I wish I could have prepared her for what was to come and assure her that she and her little boy will come through it changed - but amazing. 

I wish there were markers or milestones that we acknowledged every time a woman in my shoes takes a step to recapturing that woman she used to be. 

I know I’ll never get her completely back.  I’ve moved on to another place and it’s like moving to a new home and feeling settled after five years.  There’s no moving back to the starter home. 

I even feel proud of the woman I’ve become, proud of what she’s been able to do for her son, and blessed that he was given to me to love.

Yet, when I see the former me inside friends, cousins, and co-workers with new babies, a tiny part of me always misses her.