Friday, March 30, 2012

Special Needs Ryan Gosling - #4

Here's my take on this week's Special Needs Ryan Gosling meme.  I have to say that a cigarette butt and a coffee in a paper cup never looked so enticing. 

Click on Sunday Stilwell's "Extreme Parenthood" button on the right if you want to create your own SN Ryan Gosling meme and link it to her site.  It's a great distraction from the hussle and bussle of SN life.

See below for my post, "Coming Out," about the families we know that hide their kids' special needs.  Enjoy the weekend and take a moment to reflect on what an amazing parent you are!

Thank you Sunday!!

Thursday, March 29, 2012

Coming Out

Just recently, I got together with a friend with whom I worked at a previous job.  We toasted the fact that her daughter was accepted to a graduate program at a prestigious university.

“My husband and I were so surprised,” she said.  I must have looked confused when she said it because then she mumbled, “She had a learning disability when she was growing up.  I think I told you…”
She hadn’t told me.  Not that she had to.  But we worked side by side for seven years and she shared all the details and dramas of her kids’ communions, sweet 16s, breakups, proms, etc.  This piece of information, which probably caused her untold amounts of angst, never came up. 

She’s not the first person in my life who has recently made such a disclosure. 
A neighbor just explained to me why she never moved when her husband took a job with a very long commute by saying, “well my son was in special ed and it was working well for him so we didn’t want to move him.” 
Another very good friend visits from the west coast for work about once or twice a year and has what I thought was the perfect all American life.  On her last visit, she had a few extra martinis one night and told me that her teenage son was being treated for depression. 

I have often wondered if my friends with perfect lives knew how good they have it.  But apparently many of them aren’t perfect, and I’m beginning to think that maybe few really are. 
At first I thought these friends weren’t sharing that part of their lives because they didn’t want to shatter their image of being a perfect family.   After all, they know I have a son with autism.  I seem cool with it.  I don’t whine.  You’d think they might mention their own child’s issues without needing five martinis first. 

Now I’m wondering if they do it for the same reasons I first didn’t share my son’s diagnosis:  They are in denial.  They are waiting for it to go away.  They don’t want to stigmatize their child.  I get that.
I’m also wondering if that fa├žade of perfection was of my own creation.  They never told me their lives were perfect.  It’s just an assumption I made since their kids’ needs were not as apparent.    

Still, I have to wonder what it would be like if people were more open about the imperfections in their lives.  It's lonely to feel like you’re one of the few chosen ones with this “special” life.  
A wise friend once said it to me very simply, “Every kid has something.”  I now believe she’s right.   I also believe that if perfection is an illusion, then imperfection is the norm. 

Maybe we’d all be more relaxed if we could just start from that vantage point.  Then we wouldn’t feel like we have to hide whatever it is that makes us “special.”  We wouldn’t have to feel ashamed, judged, or isolated. 
We could meet someone and say, “I’ll tell you my kid’s special needs if you tell me yours.”

Friday, March 23, 2012

Special Needs Ryan Gosling - #3

I'm loving this photo (without the caption) and loving Sunday Stilwell more for making me laugh about my high-functioning life these past 3 weeks (scroll down for meme #1 and 2) not to mention helping me gain a new appreciation for Ryan Gosling.  

It's supposed to rain a lot this weekend so I think I may catch up on some of his movies now that I see him in a whole new light.  If you want to make your own meme, click on the Extreme Parenthood button to the right.  Happy weekend everyone!

Thursday, March 22, 2012

It's None of My Business... But...

Brace yourself...

Once you hear those six words, you know it's a prelude to advice tinged with just a liiiiittle bit of judgment... 

To add insult to injury, two mothers who have kids with special needs prefaced their sentences with that phrase to me a few weeks ago at James’s karate class.

Yes, my friends.  When special needs parents say it, well let's just say it ain't good.  It means they don't think you have things under control.  It means they may not think your SN kid is a good influence on their SN kid or even a good fit for the class anymore. 

It also raises the big question:  Are they right? 

One mom carefully worded her suggestion that we consider SSRIs for James' anxiety assuring me that they had been helpful for her son. 

She looked relieved when I told her that James is on Zoloft and she gently reminded me that they take about six weeks to kick in.  (I didn't have the heart to tell her that James has been taking Zoloft for about a year - in other words, this is James on SSRIs.) 

The other mother asked if I had a "naughty chair" or time out space for James.  [Ouch!]

To give her credit, she has seen James act up with me and, admittedly, it has not been pretty.    

I explained to her that, yes, we send James to his room when he is naughty but that he is generally very happy and mild mannered at home (not true but I was caught off guard and words just came out of my mouth).

"Oh, o.k.," she said quickly lest I throw any more lies into the ring. 

But then sitting there in the tense silence as we watched our kids in their class, I had time to think some more... James has been more aggressive lately. 

His social skills teacher said that he's been rougher in their group.  It hasn't been a picnic at home.  James has been having outbursts over the simplest requests.

Of course she wants to know if we have a naughty chair!

But, how did my sweet boy become the disruptive, bad kid and how did I become the mother who let it happen? 

Things have been going well at school this year after a harrowing year in a public school integrated class that didn't work for him.  With James more settled, I signed him up for two special needs classes on Saturday - karate and movement.

After speaking to James’s psychologist, she explained that the two classes are too much for him.  He needs time to decompress and he counts on the weekend. 

Even though he's in a more appropriate school setting, the world still comes at him pretty fast and here I am taking away his downtime and his chance to regroup. 

So, he's not good company.  He's tired, he's anxious, he's pushing back - and I haven't been listening to him.  It took two other parents to get up the nerve and essentially say, “Jacqueline, it's none of my business, but have you read the writing on the wall?  Something’s not right."

Thank you friends - for making it your business.

Saturday, March 17, 2012

Special Needs Ryan Gosling #2

Like last week, this one was a lot of fun!  Scroll down to see last week's poster.  Thanks again to Adventures in Extreme Parenthood.  Click on the Extreme Parenthood button to the right to learn more on how to create your own poster or to see some awesome posters created by other bloggers.

Thursday, March 15, 2012

My Plan C

I always thought my son’s autism would go away by the time he turned 8.  James has been getting therapy since he was 21 months.  He is considered “high functioning.”  All he needs is a few thousand hours of therapy to fix him right up and then I can go back to the life I was meant to have. 

That was my Plan B when my Plan A of having a typical life from the start didn’t work out.
Now that James is 8 ½, I’ve moved that timeline to age 16.  Puberty would have come and gone.  He’d have another few thousand hours of special needs schooling and therapy.  We should all be fine by then.

But since Plan B is taking longer to achieve than I thought, I’ve started to put Plan C into effect.  Plan C can be a little fun.  With Plan C, I get to go to H&M, American Eagle, and Forever 21 with my teenage niece.  I get to buy Starbucks gift cards, costume jewelry, and Ugg slippers.  I’m a cool aunt.
You see, my niece is my Plan C and the clothes, gift cards, and slippers are for her.  It’s not a bribe.  I love the girl to pieces and would be indulging her no matter what. 

But when I look at her, I see more than a sweet niece.  I see a budding grownup who can manage a special needs trust or who will invite my son over for Thanksgiving.
Up until recently, I felt silly and even a little pathetic about my Plan C.   My niece is 18 and right now her so-called “cares” in the world center on boyfriends, tests, whether she has pocket money for a frappuccino, and probably some things that I don’t want to know about it. 

But last weekend I attended a workshop at our local Y on financial planning for your special needs child.  Until now, we’ve have no plan in place for James (because autism was supposed to go away).
However, with Plan B on hold, it seemed prudent to check it out or at least as Donald put it, “have the 'what-if-I-die-tomorrow' plan.”

There were six other parents at the workshop with kids of different special needs and ages and they all shared my concerns – who will watch our kids when we’re gone. 
Like me, most were worried that relatives weren’t the right people for the task.  And assuming we live to a ripe old age, even relatives who are ready and willing would be just as ripe. 

I joked about praying that my niece didn’t move to the other side of the country.  Others laughed and chimed in with similar stories about younger underage relatives who they were grooming for the job. 
One woman admitted she was thinking of having another child just to make sure there was someone there for her son.  One father revealed that he can’t stand his sister but always has his nephews over for sleepovers because he wants them to love his son.  As one parent said, “Hey, it’s what we do.”

I didn’t leave with a financial plan, but I left feeling better about Plan C and not as alone.  The financial planning is coming along.  But right now, I’ve got other things to do.  H&M is having a sale and I gotta go pick up something for my niece….

Sunday, March 11, 2012

Special Needs Ryan Gosling

Thank you Extreme Adventures in Parenthood!  This was fun! 
If you want to know more about the Special Needs Ryan Gosling meme, see more great posters made by other bloggers, or make one of your own, click on the Extreme Parenthood button to the right of this blog.

Thursday, March 8, 2012

When Does the Fun Start?

We had a fun Saturday planned.  My son, James, and I were going to his special needs karate class that morning and then we were going to see Star Wars in 3D.  James, who is usually ambivalent about karate, couldn’t wait to get out the door and he was even more excited about the movie.

When class finished, I went over to ask the instructor a quick question.  James doesn’t like it when my husband, Donald, and I talk to other adults when we are out.
While I was chatting, James was saying, “Why are you talking to him?”

“Hold on James, I am asking him a question.” 
“But why are you talking to him?”

“I need to ask him a question.”
James was agitated.  And then he said it…

“Mommy, you’re such a pig.”
Suddenly, there was a hush in the gym.  The special needs parents, God bless them, turned away like they didn’t hear it and started fussing to help their kids put on their shoes and coats.  In the silence, I could feel their pain for me.

I felt like I needed to respond but I didn’t know exactly how.
“What did you say?” I asked sternly (wrong question because James took the question literally and answered).

“I said you’re a pig.”
The instructor was standing next to me.  For a moment, he lost his Zen-like calm and looked mad and then he quickly composed himself.

“Hey James,” he said, “Do you want to see something really cool?

He pointed to me.  “Your mom.  She’s the coolest thing you have.”
James didn’t answer. 

“James, put on your sneakers,” I said with no emotion.  “Get your coat.” 
While I was grateful that James didn’t say this while we were at a family affair when the silence would have screamed, “See, he’s not autistic!  She just babies him!” I still walked out of the gym in shame.

The odd thing is that even though I felt so defeated, it didn’t immediately occur to me to tell James we weren’t going to the movies. 
As we were walking out, I was vacillating over whether he understood what he said and how hurtful and humiliating it was.  Was he just repeating some TV talk and he didn’t know what it meant?   He couldn’t have meant to disrespect me, could he?  He has autism…. 
I called my husband, Donald, who is usually a bigger mush than me and told him what happened. and ask him what he thought.  "F*** no!  He’s not going to the movies!”  (Well when you put it like that…)

I told James the final verdict and I won’t describe the histrionics on the way home. 
But through the ranting, I thought about how this wasn’t the first time James has mouthed off to us or thrown things lately and how we’ve made excuses.  He doesn’t understand.  He’s just using words from a superhero show.  He doesn’t have friends and he needs to know we love him and are there for him. 

I realized that after a disastrous school year, we finally have James in a special needs school and things are going much better.  We’ve been basking in the fact that we haven’t gotten “the call.” 
We’re glad he holds it together at school and have made allowances for him “letting loose” at home.  But now he was letting loose in public.
Could it be our relatives would have a point?  (We can’t have that!)

We got home and laid down the consequences for bad language and behavior.  Did he understand that he can’t be mean or is his only motivation his desire to play Beyblades?  It doesn’t matter.  
We’ve done James and ourselves a disservice by kicking back and not holding him to a higher standard.  James is sad that we’re mad and that he didn’t get to see his movie.  I didn’t get my mom/son movie day and I was hurt and embarrassed.  We’re all miserable. 

Autism or not, we all deserve better and, hopefully, if we stand by our new rules the fun can start for all of us again.

Thursday, March 1, 2012

Don't Ask, Don't Tell

No one told me that it might be like this.  My mother didn’t.  Other relatives who are parents didn’t.  Neither did my friends with kids. 

No one said parenthood is hard.  With all the jokes about “Say goodbye to sleep,” no one said, “You might have a child with autism.”

And even now, no one acknowledges it.  They go along with their merry lives not saying a thing as if my family is an anomaly. 
James is 8, and my husband, Donald, and I seem like we have it handled so no one asks, “So what is it really like?”  “Does it just suck sometimes?”  “Do you ever feel lonely and isolated from the world?”  “Do you worry about James’s future?”  ”What’s the secret to your light and happy disposition because if I were you I’d be a freaked out mess?”
The truth about my special needs Zen vibe can be found in the pages of “Gone with the Wind.”  I’m Scarlett O’Hara.  I won’t think about it today.  I’ll think about it tomorrow.  Only in my case, I’ll think about it when James is 18. 

I have 10 years to make everything o.k.  Until then, I’m not letting myself think about the future.  And I’m sure when James reaches 18, I’ll wait until he’s 21.  And when he’s 21…. 

I tell myself that if I just keep focusing on how far he’s come, then he’ll just keep coming further.
I have no way of knowing that except that I look at him and can’t imagine the alternative.  I tell myself that Temple Grandin didn’t talk until she was 5.  Michael Phelps had ADD.   James Durbin has a record contract. 

My son has been in therapy since he’s been in diapers.  At times, I see glimpses of something very deep inside him.  Can he be a future Temple or James Durbin?  Will he come out this with a story of how he overcame adversity to inspire others? 
Delusions of grandeur aside, I just want him to be loved, valued, and appreciated by someone.   I’m so scared of thinking about him being alone in the world that I just need to tell myself that it will be o.k. 

James is so attached to me and Donald.  While I love our happy threesome, I want him to feel that connection with other people and for them to feel it back and want him in their lives.
He has the brightest eyes I’ve ever seen and the thought of those eyes losing their shine and feeling alone and hopeless just crushes me.  So I cross my fingers and hope that he’ll grow out of autism to find friendship and love.

If he doesn’t get to that point, then I pray for him to be happy and to keep those eyes and to make sure that people are there to love him, care for him, and make him feel secure. 
Donald and I come from small families and James is an only.  If something happened to us tomorrow, Donald’s sister is our likely candidate to be James’s caregiver.  But she is much older than Donald so she’s no help long term unless she lives to be 110. 
Sometimes I think the worst mistake I made was not having another child for James to have in his life.  But I was scared and convinced that another child would have special needs as well.  But at least they would have had each other. 

It’s no use looking back though.  There’s only today and of course tomorrow – when I finally decide to think about it. 
No one told us what parenthood was going to be like and no one asks questions now.  I imagine they don’t ask because they’d rather not think about it – just like me.