Thursday, May 31, 2012

Picking Up the Slack

Six weeks ago, a former boss offered me a position at his new place of employment.  I didn’t have to think twice before I declined the offer. 

I didn’t expect him to be surprised by my answer.  He knew that my job was convenient for me – it was a five-block walk from my apartment.  He knows I have a son with special needs.  In his mind, I was comfortable where I was.  
And in my mind, I was comfortable unless the right opportunity came along.
I knew his offer required working outside of Manhattan – a reverse commute.  That was a no no. 

Who would get my son, James, dressed for school, or take him in if he missed the bus?  Who would do homework with him, or go to school events and therapist meetings?
It just wouldn’t work.  But this gentleman was persistent probably because like a man he wasn’t thinking about all that I have to manage.

But then another man chimed in about it.  It was my husband saying I should take a more serious look into this opportunity.  
“But, who’s going to manage all of this?” I asked.

“What is ‘this’ and what do we need to ‘manage’?” he answered.
[Is he kidding?  Either I’m so amazing that I don’t even break a sweat – or someone isn’t paying attention to all that is going on.]

“Hmm.  Let me think… ‘This’ is know…our LIFE…our autistic son, the appointments, the cleaning up, the “stuff”…all the freaking “stuff” that requires a flexible schedule.  If I take this job I can’t just pop into school or come home whenever something comes up.  You’ll be with James for at least an extra hour every night and you’ll have to get him dressed and on the bus in the morning…”
“We’ll be fine.  I can pick up the slack.”

[Slack?  Is that the name of all I’ve doing?]
I reminded him that he’ll be the main contact with the school -  “…that means you have to carry your cell with you at all times now.  Are you o.k. with that?” I asked.

“Sure….” He answered with less conviction in his voice.  
I spent the next two weeks in deep discussion with friends over whether we could make this new world order work. 

But the consensus was that people will have to manage including our eight-year-old son, which may not be a bad thing.
It’s been just a few days and so far we’re all o.k. 

The commute is an hour every morning and evening of “me” time.  I can read, write, and think with no distractions.  I haven’t had that in eight years. 
Have I been overestimating this slack thing or will something big hit the fan soon?  Or maybe it’s something in between and the timing is right because we’re at a place where we can all handle it. 

If this really works, then I’ve reclaimed a part of my life even if it means escaping on a train to do it. 
Maybe it will be exactly what I’ve needed.  Actually, maybe it’s what we all needed. 

Friday, May 25, 2012

SN Ryan Gosling

What is it about rolled up sleeves that make Ryan look even more sexy?  I think I need to write a blog post one day about those days when the social worker calls - because we all know it's never ever good when the social worker calls.  I don't even know if a wakeup call from Ryan could erase the scars of the social worker call.  What do you think?

To join the the SNRyanGosling meme fun, click on Sunday Stilwell's "Extreme Parenthood" button to the right and you'll find step-by-step instructions to creating your own.

My blog post below is about how all of the therapy in my son's life has led me to see a therapist.

Thursday, May 24, 2012

The Notebook

Growing up in my family, the idea of seeing a psychologist never entered our minds – unless we were rolling our eyes about other people. 

Who needs therapy when you can just talk about things over a beer with a friend?  Shrinks were for people who didn’t have friends or who were looking for problems that weren’t there.
This week, my husband commented that I’m entering my fifth year of therapy and James is entering his sixth.

James’s shrink is part of a whole team that I affectionately call “Team James” and which include a speech therapist, OT, psychologist, psychopharmacologist, teacher, and social skills instructor.
When reality hits me, I wonder why I need a team of six people to help me raise my child and do something as simple as negotiate a visit to the grocery store. 

Bless everyone’s heart, they all have observations and advice and I bring my notebook to write it all down so I don’t forget – and so I can share with my husband and my shrink who helps me sort things out.
It’s a simple three-holed, spiral notebook.  But when I take it out of my bag at meetings and place it on the table, the therapists’ eyes freeze on it.

I have joked, “Don’t worry, nothing you say will be held against you…,” but I know they are thinking the exact opposite. 
But other than videotape the conversations (I’m sure they’d love that), how else can I keep up with the endless scrutiny and suggestions about every minute aspect of James’s life?

 I don’t have my son’s ASD memory to remember all this:
James twirls his hair incessantly throughout speech.

He doesn't twirl his hair in OT.

Monitor his hair follicles to make sure the twirling isn't damaging them.

Don’t tell fibs even if you’re joking because James needs to trust what comes out of your mouth.

Don’t joke too much; he’s very literal and it confuses him.

James goes to bed too late. 

Don’t let James visit your room in the middle of the night and sleep in your bed.

To encourage “pro-social behavior,” don’t say, “If you do X, you’ll have a consequence.”  Instead, say, “If you want to do Y, then you’ll choose not to do X.”

Don’t use too many words in giving explanations; he can’t follow it all.

Once we get home, I read the notes out loud to my husband – “A reading from the book of James,” I joke.  He calls it – “A reading from the book of what we’re doing wrong.” 
After I go over the notes with my shrink, I put the book away with the intention to follow through on each one of them. 

But my high functioning brain is fried and I really just remember one or two.  No wonder I need six people to tell me over and over what I’m doing wrong, and then I need my own shrink to tell me that I’m a good parent. 
I'll bet if I just had beer with girlfriends, they'd tell me I’m taking notes at the wrong place.

Friday, May 18, 2012

Big guy, little guy... whatever. Ryan is MY guy.

Click on the Extreme Parenthood button on the right to create your own meme compliments of Sunday Stilwell (isn't that a great name?) and join the fun.

See below to read my post about autism and the neighbors (I'd rather Ryan was my neighbor so I'd have a reason to put in my contacts!)

Thursday, May 17, 2012

Hi Neighbor

My son, James, is 8 and I’ve considered it a blessing in disguise not to have kids his age in our apartment building.

I don’t have to share elevators with families that have typical kids who play with each other. I don’t have to watch James try to be friendly and deal with the embarrassment of parents whose kids won’t respond to him.

When people run into James and me, they may sense that something is off -- that he’s in his own world, hyper, anxious, or just unusually silly. 
But they are more likely to assume that James is typical and it’s just his indulgent parents who spoil him and make him so quirky.

My husband and I don’t mind since we’re protective of James (and we’re still waiting for autism to go away). 
A few weeks ago, however, I was in the laundry room with a woman whose daughter is approaching school age.  Like most New York City parents with a small child, the only thing on her mind was where her daughter would start kindergarten. 

Upon seeing me and knowing I have a son in school (and not knowing he goes to a special needs school), she started blabbering about the neighborhood school, should they do private or public, the testing for private schools, whether her daughter would get in...
I just listened with one ear feeling confused and envious. 

Then came the inevitable questions… “Where does James go to school?”  “Does he go to public or private?”
I wasn’t prepared to be asked and didn’t know what to say,  “Oh, he goes to P.S. 2,” I outright lied.

“He does?!  Do you like it?!!” 
Then I realized there was no way to get through this conversation without drowning in a sea of lies, so I backtracked, “..Well…actually, he did go there.  This year he goes to a school that has small classes for kids who can’t focus.  James has issues…” 

Now she looked confused and I was the one blabbering.  
I don’t know who was more uncomfortable – this woman wishing she had never asked, or me who couldn’t exit the discussion gracefully.

But by the time I got back to our apartment, I felt better – almost relieved.  I told  husband that I outed us to a neighbor and everything was o.k.  I wasn’t on my game, but it still felt good.  In other words, I think we can do this.
Just this week, I was in the elevator with a young woman who got off on my floor.  We hadn’t met before and introduced ourselves. 

Her name is Sondra, she lives in New Jersey and is splitting her time in the apartment with her parents who live in California but like to come to New York.  She’s a designer.   
I told her that I’m Jackie.  I pointed to our apartment down the hall and said that I have a husband and a son named James.  “James has autism and we can be noisy in the hallway.  We’re sorry!” I said with a smile.

She was nice. She didn’t flinch.  She just nodded her head and smiled back. 
Now that wasn’t so hard.  Actually, it’s getting easy. 

See you around neighbors!

Friday, May 11, 2012

Special Needs Ryan Gosling

Ryan is so smart.  Sometimes I wish I could hide out in one of these when my son is having a meltdown. 
Click on Sunday Stilwell's "Extreme Parenthood" button to create your own meme or read some really funny ones. 

My blog post below is about  my best friend, Denial. 
She gets me through the day. 

Thursday, May 10, 2012

Denial - It ain't just a river in Egypt

No, it’s not, and if it was it would be easier to know where it stands in my life.  It would be easier to touch it, feel it run through my fingers, and then know for sure that it was real. 

Am I living it when I look at James and see his leaps?  When for those moments, he is acting like any other child – laughing at the same joke as me, reading a comic book and twirling his hair like I do, trying to do a magic trick with coins, making up butt jokes. 

Isn’t this what 8 year olds do?  They are curious, innocent, silly, active.   So is my kid.  For those moments, he’s typical. 

Is that denial or is that me seeing what is possible?  Is that me seeing what others don’t?  Could they all be wrong and I’m right?

I have my eye on the prize of my son one day living away from home, living with someone who loves him, and having friends. 

Is that Jackie believing in him and seeing the true James or is that Jackie in denial because the truth is still too painful?   

All of these kids who grow up to overcome odds and win Olympic medals, all those mothers cheering on the sidelines who become overnight celebrities themselves when the world learns their child’s true story.  Could I be one of them?  So many of these medal winners have overcome bigger obstacles than my son, right?

It was the second evening after James was born when I was finally alone with him – just my son and me, no visitors.  I had rarely held a baby before then and now there I was standing alone in the hospital room in my slippers and robe, holding my swaddled baby. 

At that moment, I looked at him and a voice said to me, “He’s different.”  There have been very few times in my life when I’ve heard the voice come to me so distinctive and clear. 

Throughout James’s first year, I knew he was different.  Something deep inside of me even knew he was delayed.  I’d tell people when James was two months that if he had his druthers he would have stayed in me another two months.

But no one believed me when I said I thought something was different about him.  People said I was neurotic, I was looking for something that wasn’t there, it was because I hadn’t been around babies very much.

There was a tiny sense of relief when his daycare told me he was delayed.  I was scared but also knew, “I was right.” 

I was right about James from the very beginning.  I saw what no one else saw. 

So it would stand to reason that I am right now.  And that I still see what no one else sees.  That I see the boy who works so hard to get through the day despite the noise, the frenetic pace at which the world seems to go by him, the social language that he can’t quite make out, the connections that he can’t seem to make with people although he seeks it out. 

I see the boy who has moments when he can almost share the same world as me.  The rest of the time, he’s trying to keep up with us. 

All I have to do is keep remembering to understand his world and listen to him.  Help him understand himself, show him I believe in him, and slowly guide him over the bridge between his world and mine. 

All I have to do is follow my gut, my heart, and my love, and wait for the voice to finally tell me, “He’s o.k. now.”  Who can deny that?

Friday, May 4, 2012

Special Needs Ryan Gosling

Thank you to the smart posters who recommended picmonkey.  It's so easy!  And thank you George Costanza for telling me about shrinkage.  Who says there's not enough educational programming on TV? 

I don't get a chance to Tweet and post as much as I'd like, but I enjoy being a part of Sunday Stilwell's Ryan Gosling meme fun.  I think all of you parents of SN kids rock in such a big way and I thank you for sharing your lives with honesty and humor and making us all connected. 

Click on Sunday's button to the right if you want to create your own meme or laugh at some great ones! 

Have a happy weekend!

Thursday, May 3, 2012

Just Say No

A relative, who holds the family title of “perfect” mother, announced that she is converting to her husband’s religion.  Her kids are young and she doesn’t want them to be “confused” as they get older.

Knowing that my husband, Donald, and I are of different religions, she asked me with her wide, wondering eyes, “Do you worry that James will be confused?”
“No,” I responded matter-of-factly. 

In the past, I would have over explained my answer and be upset with myself afterwards.  My new mantra is that I don’t need to give people the right answer or explain why they aren’t getting the answer they need to hear. 
Instead, I leave the explanations in their court.  Does my “No” mean that James has autism and would never know the difference so her question is moot, or does it mean that I think she’s an idiot?

The truth behind the “no” is really in between.  Our 8-year-old son, James, has autism and he knows that Donald and I are not the same religion.  
But unlike her little snowflakes, who apparently will need a support group as adults to cope with their confusing childhood, my son isn’t stimming over this one. 
The truth is I’m actually a little envious that she has time to think about this sort of thing.  Just like a neighbor who recently saw me tying James’s sneakers and asked, “James doesn’t know how to tie his shoes?”

“No!” I replied.  I didn’t start rambling that he’s always worn Velcro so we didn’t get much practice.  I didn’t lie and say that he can tie his sneakers but we’re in a hurry so I’m doing it for him right now.  Just a simple “No!” -- with a tinge of attitude.
She was left to decipher whether my “No!” means that it is frustrating to me that James can’t tie his shoes despite my attempts to teach him and she is an ass for asking, or that if he could tie his sneakers he obviously would so shut up.

The truth is I don’t care if James can’t tie his shoes.  I’m assuming that by the time he is 21 he’ll know how and if he doesn’t, he’ll wear loafers. 
The beauty of “yes” or “no” is that I’m not angry with people and their questions - or with myself -afterwards.

It’s also cleared some space in my head to realize that I might be them if I wasn’t me. 
Maybe if I had time to put my contacts in and clean my house or if my kid went on play dates and I had a minute alone, things would be more black and white for me. 

I’d feel like I had the perfect life because I made all the right choices, and those other people with their imperfect lives -- well they didn’t really think it out as well as I did.  So what did they expect?  Now they have kids who can’t tie their shoes and are confused about what to believe.

Do I think that I would be that way? 

Would I switch my special needs life with them and become the almighty perfect mom who made all the right decisions?