Friday, January 10, 2014

Wicked

My husband’s cousin, who had been living overseas for years, just moved nearby and has joined our lives.  She knew James has autism but had only met him once before she moved back.

Earlier this week, she called my husband all excited.  She found out that the show “Wicked” will be having a production just for kids on the autism spectrum and wanted to take the three of us as her guest.  My husband called me over, told me about her offer, and put us on speaker (which I told him never to do to me again) so I could respond.
It just came out of my mouth:  “You know, I’ve seen Wicked.  It’s long and I don’t think I could sit through it again.  But you guys can go.”

My husband has no desire to see Wicked so he was shaking his head to say “Noo……!”
But she didn’t take me up on my offer.  There was silence on the phone.  I had already trampled on her gesture. 

I signaled him to take us off speaker and he did while rambling on to her on that James can’t sit through long plays, etc. 
I felt so bad.  I didn't mean to sound so flip.  I thought about a friend of mine who is gay and came out to her family years ago.  A few months later, they decided to rally around her and come in from Connecticut to march with her in the Gay Pride Parade.  She was mortified.  “I just want to march with my friends.  What do I say to them?”

“Aww… that so sweeeeeeett…,” I said.  “They want to show their love and support.  You have to let them do this for you…”  I’m sure she’d be saying to me, “Aww…you jaded pill.  It won’t kill you to sit through it again.  Let her express her love …”
I know that I, like a lot of my SN mom friends, roll my eyes when well-meaning people with neurotypical lives send us every article about autism not realizing that we are walking encyclopedias on the subject, or tell us, “Oh my son does that too."  (Really, he always licks his wrist before he puts a piece a food in his mouth?) 

But I have to realize it all comes from a good place and there is no right thing to do or say when you have a friend or family member who has a child with special needs.  Some of us want people to acknowledge it more, some of us want people to acknowledge it less, say this, don’t say that, invite me to your kid's party, don’t invite me... 
No matter what they do, they open themselves to our judgment and even outright rejection, which was the case for our cousin and her beautiful offer.
So I resolve to give neurotypical families a break and, of course, figure out a way to make it up to our lovely cousin (cause I still don’t want to go see Wicked).

Wednesday, September 25, 2013

This Magic Moment

After all the heavy legwork of autism…the evaluations, therapies, schooling,, etc… the hardest part for me is birthdays.  All the feelings hit home when James’s birthday comes around.  James turns 10 this month and has never had a birthday party with other kids.    

There’s always been a reason.  He wasn’t related enough.  There was no one to invite.  He couldn’t handle group settings.  Every year, I grin and bear it (and cry of course) and then tell myself, “maybe next year…”

James is getting closer to making friends, but put him in a room with more than one kid and it’s too much for him. 

So I resigned myself to another year of no party, but then something unexpected happened.

My husband decided he wanted a party.  He called the parents of a classmate of James who also has autism and has a birthday around the same time and asked if they’d like to have a bowling party for just the two boys and our families.

They agreed and he proceeded to plan the day, asking them about diet restrictions, calling the bowling alley about rates, food, etc., ordering a cake… 

It was surreal.  He’s a great father but for the past 8 years I’ve been the one coordinating therapies, finding schools, hosting team meetings and playdates while he looks on and says, “So is the therapist with the red hair the OT or speech?”

Now he was a man on a mission, calling the family regularly and updating them on his planning. One night he held up the contract, “I’m filling it out now and sending it back.”  (So you do know how to scan a document and send a pdf… I knew it!) 

While watching him in action, I was nervous and would make comments about keeping it more low key, “It’s just the two families; why do we need a contract?”  And he’d say, “Because this is how I’m doing it.”  (Subtext:  stay out of it.)

So I braced myself for the day, keeping my fingers crossed that James could keep it together and this time not so much for James but for my husband who really wanted this.

The morning of our party, James woke up so excited about his “big day” and started practicing bowling on the wii.

I was still holding my breath when we arrived at the bowling alley and met the family.  Then I saw their faces.  They were beaming and their son was as excited as James.   Again, my husband just took over - checked us in and handled everything. 

The kids had a ball.  They laughed and bowled and ate and the adults did the same thing. 
 
When the cake came out, we all sang Happy Birthday and when we finished singing James put his arm around the boy and they blew out the candles together.  I held in my tears of joy.  I could see the other mom did too.  I’ve waited ten years for this moment. 

When we got home, my husband said, “So I did good, didn’t I?” 

“You did amazing.  I was afraid to get excited.”

“I could tell you were. “

“I needed that.”

“I know.  We all did.  I know you do everything and I do nothing and now I want accolades and you’re thinking, ‘But I do this every day,’ but you can still bring it on.”

And I did – and still am.  It’s been almost a week and I’m still floating through the day.  If my job wants to fire me, if anyone wants to drop bad news on me, now would be a great time because I’m feeling no pain.  I’m still living in my magic moment. 
 

Friday, September 6, 2013

Fingers Crossed

I’m high on the Lord.  I put positive energy into the universe.  I like Oprah.  But when it comes to my son, James, I just cross my fingers and hope for the best. 

Fingers crossed that the playdate goes well.  Fingers crossed that he likes camp.  Fingers crossed that he has a good year at school.  Fingers crossed that he’ll keep it together at a party.
There is no rhyme or reason as to why one situation turns out well and another doesn’t.  I can prep him, prep others, give him his meds, make sure he gets a good night’s sleep, draw pictures, and structure the heck out of the day. 
But in the end, the cards get thrown in the air and we see where they fall.
We started last year feeling very optimistic about school (because the year before had gone so well).  I thought we were in coast mode. 
But Day One was a disaster and we never rebounded.  I stared at my iPhone for a year waiting for an e-mail, text, or phone call from the school. 
This year, I think he’s in a better state of mind, but I really can’t count on that because we take nothing for granted anymore. 
There is a sense of liberation in this knowing that despite all I do, I cannot control the outcome of a situation. 
It means I don’t have to beat myself up when things don’t go right – the playdate went on too long, I should have spoken up more last year when I sensed that the teacher wasn’t right for him, I should have given him more breaks from activities this summer, I shouldn’t have upset him by talking to a stranger in his presence…  Maybe that’s how I get to coast mode.
It may also mean another step toward acceptance.  This is James and he is who he is. 
We’re going to live our lives and help him as much as we can, but at the end of the day we just need to accept who he is and take things as they come. 
Hopefully, it will take the edge off our anxiety as he enters 5th grade. 
School starts next week so…fingers crossed…

Thursday, July 11, 2013

Swoosshh...

“Swoosshhh…..”  That’s the sound my son, James, makes when he is in his fantasy world pretending he is Anakin Skywalker, the Green Ninja, or Harry Potter.

James can swoosh around the apartment for hours at a time.  We’ve tried pulling him into our world by signing him up for activities like karate, swimming, and soccer.  We try to find playdates for him. 
But before we leave for a sport or get ready for the playdate, there is often a huge blowout with James refusing to go or ranting that he doesn’t want to share his toys.  

James will be 10 soon and we thought we’d be closer to having him join the real world, but it obviously hasn’t happened.
James had a week off between school ending and summer session starting at his special needs school. I tried to fill up the days with fun things to do.  But he’s older now and has his own ideas. 
Idea #1:  He wanted a sleepover at my mothers.  (Woo hoo!)   Idea #2:  He doesn’t want to go to summer school.  Idea#3: He doesn’t want to take swimming once a week after school.  Idea #4:  He wants to be like a turtle and stay inside his shell (why am I surprised?).
Idea #1 was easy (and great for me!).  James spent four days at my mother’s and according to her daily reports he was a dream (mom is nice and wouldn’t upset me no matter what).  
When I arrived to pick him up, I saw that she was right.
He never “swooshed.”  He didn’t twirl his hair. He ate everything on his plate.  He leaned over the table so half his food didn’t fall into his lap. 
He said the water was “made with love” and kept asking for “love water.”  I gather he feels safe at my mother’s (Gee, you think so?).
My parents live in a quiet retirement community.  The demands are low and the day for the most part is structured.  Their home is neat and clean (i.e. there isn’t stuff everywhere like our apartment).  The futon stays open in the den and James gets to sit on it and watch TV and have his snacks hand-delivered. 
It’s hard to watch James be so “on” when he gets his wish to be like a turtle in a shell.  I saw him change the minute my husband called to check in.  James got on the phone and proceeded to launch into superheroes while twirling his hair. 
Obviously, we represent “the real world” and all the stuff he doesn’t want to do so he retreats to fantasyland.
I’m not sure which is best -my place where we always coax, challenge and push him to deal in our world so that he escapes to his own, or my mom’s where there is no pushing, just pure acceptance and indulgence of who James is and what makes him happy.
I assume there is a middle ground which might result in just a little bit of swooshing, not a lot.  But we’re not there yet because it’s hard not to want what you want and to hope that someday James will want it too.
 

Saturday, June 15, 2013

Father Knows Best

(Life has gotten in the way of my blogging, but since nothing has changed much about my husband being a rocking dad, I am dusting of parts of my post from last year to pay tribute to all special needs dads.)

 
We all know that special needs moms rock.  But there is a guy perspective to autism that I don’t know if I could live without.

Here is my shout-out to my husband and all special needs dads who sometimes see the forest for the trees more than we do, who let our kids be kids, and who aren’t afraid to ask the un-PC questions.

My reasons why my husband – and I’ll bet yours too – is an awesome dad:

He is our son’s best friend.

He knows our son wants a best friend, so he makes sure he’s it – right up their Friday night ritual of eating pizza, M&Ms, and ice cream and watching three hours of Cartoon Network (P.S. The Regular Show is great).


He embraces our son’s obsessions.

He read that Beyblades is a great “social” game for kids and has wholeheartedly fed James in his obsession. We have five stadiums, scores of blades, a membership to the World Beyblade Organization, and a homemade poster in our living room with their daily tournament scores.

 
He acts gross with James and they both laugh.

Thankfully, Secret Mountain Fort Awesome was taken off the air soon (does anyone remember it?), but they still act out the characters.

I won’t go on. If you’ve been unfortunate enough to see the show, you know what I mean. If you haven’t, I won’t dignify the show with a description. (Google is your friend).

 

He asks the questions I may not want to ask or don’t think is appropriate to ask.

What percent chance does my son have to live independently? On a scale of 1 to 10, just how much on the spectrum is he? Will he ever have friends? How did this happen to him?

 
He walks with our son with his head held high.

No explanation needed here.

 
He keeps my bourbon stocked.

No explanation needed here either.

 
Sometimes father knows best. Happy Father’s Day sweetie!

 

Wednesday, May 22, 2013

The Karate Kid

A woman we know who is a karate instructor invited James to join a new class she was starting.  She is chock full of energy and always has a lot of projects in the air. 

I gave her a half-hearted yes at first because in theory it seemed like a nice idea and I haven’t found a karate class for special needs kids.  James also responds well to Estelle because she is very direct.

Last week, she reached out to see if we were confirmed.  I texted back and was honest.  I told her I was on the fence because I am reluctant to have James with typical kids because of how they might react to him.   
Two minutes after I sent my text, the phone rang.  It was Estelle…“You don’t have to worry about that in my class. I don’t let kids do that. I am always watching them.  If I catch them doing it, I take them aside...” and on and on she went until she started talking about the cost and what she was pro-rating etc.  I was too tired to say no.

So there we were this Sunday with Estelle.  There were just two other boys and a parent in the class. While Estelle was changing, the boys were pretending to do karate and one boy gave James a firm kick.  I could already see that they “knew.”
The class started and true to Estelle’s style, it was a whirlwind.  She talked fast and got right into moves.  She gave little explanation and the kids barely had a moment to stop.  It was everything a special needs karate class was not. 

But, James did amazing.  On the autism scale of one to ten, James was an 11.  He paid attention, tried hard, and asked questions that were somewhat appropriate.  It was like his brain didn’t have a second to wander.
But on the neurotypical scale, James was a 4.

James was the weird kid.  The other two boys laughed and rolled their eyes every time he asked a question or said something.  Estelle didn’t notice. The other mother in the class didn’t seem to notice.  But I saw every smile and every sneer.
As I watched, I tried to give James the eye or shake my head when he wanted to ask a question. 

But then I thought, “My son is raising his hand appropriately to ask a question.  Why am I shaking my head that he can’t?  So two kids won’t smile to each other about him?”
I need to hold my head up and say, “Great job James,” not “Don’t talk James; the boys will look at you funny.”

When the class was over, I didn’t know what to think.  It’s a small class and she kept his attention for 45 minutes.  I already paid so I’m going try it week by week.
I know it’s my choice if I give two children such power.  James goes to a special needs school and we aren’t around typical kids much, so this is new territory for both of us. 

But if I can navigate the unchartered waters of autism, I can at least try to navigate the unchartered waters of snotty kids – although it seems like getting a black belt would be easier.   

Thursday, May 9, 2013

Special Moms

A mother of a boy who attends my son’s special needs school texted me, “Is everything o.k. with James?  Thomas has been upset and says there’s been a lot of yelling and cursing on the bus.”  

When I read it I knew it was code for “James is screaming on the bus the whole way home.” 

I texted her back and apologized ,acknowledging that James was the culprit and we were working on it with James and his school counselor.
She shot back a response, “Don’t worry!   I only asked because I wanted to make sure no one was bothering the boys. (sure..) Let’s get together soon!”

Another mom who I’ve been avoiding because James acted out on the last playdate called and left me a message to “check in.” 
It was official:  I felt loved. 
My son may have special needs but my own needs are quite simple.  Just a text and a phone message from two fellow special needs moms and I am set for the week.
I feel lucky and extremely thankful to have met other mothers who have been there (actually they are there), who don’t judge, who know the isolation and even the shame of being the mom with the “kid,” and who want to make sure you know that it’s o.k.
Special needs moms -- you can’t shock them.  They only try to top you so you won’t feel bad that your son took his pants off in the park because he was hot.  They agree that 20 minutes of interaction followed by 90 minutes of electronics is a successful playdate. 

And they will camp out on your living room floor so that their anxious son can have a sleepover at your house and feel like a “regular" kid.  

They tossed out the “Perfect Parent” rulebook long ago and moved on to more important things. 
That means they are fine with pizza, chicken fingers and french fries.  They don’t use the expression “healthy snacks” (some of them, like me, have never seen one).  And they never put on a shocked face when they see a child drinking soda.
They coordinate, advocate, and educate and they never compromise on getting their kids the supports they need.   
Looking for one of the FBI’s 10 most wanted?  Get a special needs mom on the case and tell her that the person in question developed a new vision therapy for kids on the autism spectrum.  She and her posse will find the guy overnight.
This Mother’s Day, I celebrate all of you awesome special needs moms for being there for your kids, your families, and each other.