Odd One Out – A poem about being Autistic, in her words

I have written about my daughter before (and here). This morning I turned on our home computer to listen to music and found her homework on the screen. What I read made me sob with pride. With her permission, I am sharing it here.

Our journey was filled with doubt and questions and pain and mistakes and worry. Autism is different in every kid, which means that every family has to find their way through the forest alone. Yes, there are experts and resources available, but what works for one child may not work for another. Your journey is unique.

Her high school requires a year long Sophomore Service Learning Project. Through assignments in History and English classes, students study a “world problem” and present their findings at the end of the year. This poem was part of an English assignment.

If you know a child with Autism or Asperger’s Syndrome, I hope this brings you some peace. There is hope for a bright future.

Odd One Out

When I was diagnosed

It made my mother

Cry

And my father was

Pensive

They were very afraid

Of what would become

Of me

I look up and then look

Down because the world is

Overwhelming

My peers always avoid me

They know that I am

Different

Feeling that others can

Cover are not so easy to

Control

The anger, the worry, and the

Sorrow are all so plainly

There

Now I ask you this

Will I always be the

Odd One Out?

No!

The therapy is working

They have put me on a

Diet

I do much better in school

And I can look in your

Eyes

I now have friends

That I see almost

Everyday

I found out my obsession

Can be the key to my

Future

Just like Warhaul, Gates

And Zucherberg too

The geniuses

I go to regular school

And I see a counselor

Whom aids me with

Life skills

Don’t focus on the bad

I can never be

Cured

But I know I will go far

That you can be

Sure

Please do not be afraid

Because I know I will

Prevail

And so will your child

If they have the proper

Care

They will find the things

That ignites the sparks

Within

It’s the key to their

Futures

Believe me when I say

They will not always be

The Odd One Out


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Her Autism Story in 10 tweets

Monday was World Autism Day and I tweeted some thoughts about our journey. Our story is different than the typical Autism story – for one, it’s my daughter that was diagnosed. That makes her a minority in the Autism world where boys are diagnosed about five times more often than girls.

Last week, you may have seen the reports that Autism diagnoses are up to 1 in 88 kids – nearly twice as common as previously believed. The evidence points to better diagnostic practices and I, for one, could not be happier about it. Early interventions make a world of difference in Autism therapies, so if we can get every kid on the spectrum the support that they need – then there is hope for a brighter future.

Her story

Every kid with Autism has their own story, their own way of expressing the diagnosis. I have read everything I could lay my hands on, but found that the best resources for us when written about girls on the spectrum. Girls are different than boys and I think that once these differences are better understood we will see the incidence rate rise even more.

 And that will mean that more kids will get the help and support they need.

Some resources I found helpful are listed below. Both are written with the older Aspie in mind, and Aspergirls in particular had great chapters on being happy, as well as a chart showing the differences between boys and girls with Asperger’s.

Planning a Sweet Sixteen

My daughter will be sixteen in less than two weeks.

Let’s pause for a moment of silence.

We have talked about the big day on and off for weeks, but with the date looming over our heads now – it is decision time. For me, this decision process brings up memories of not-so-great birthdays in the past and how she has triumphed over some very dark times.

So what made the short list for her big day? Here’s her party planning ideas (all options would occur under parent supervision because we are THOSE parents):

  1. Go to San Francisco with friends –This day would involve hitting Pier 39, an art museum, shopping in Union Square and dinner. (SF is about 45 minutes from our house.)
  2. Go to SF and see a band – good possibility with this one, but she’s having trouble finding a show that would be awesome AND allows 16 year olds to attend. Oh, the burden of youth.
  3. Catered party at home with all friends – this is different than the “party at home with all friends” she has had the last couple of years in that the food would come from a restaurant rather than our local pizza place.
  4. Movie night – we might possibly be mildly addicted to Amazon Instant Video.

As I mentioned above, the last couple of years have been about having big parties at home. This was born out of many years of not having friends at all. She was the target of playground bullies – girls that called her names and made a “rule” that anyone who played with Lizzi was a freak. (Yes, I spoke with her teachers during this time. They told me those girls were not mean, cruel monsters because they drew the happy pictures currently taped to the teacher’s desk. That is a rant for another post.)  In 3rd-5th grade, I think she was invited to a total of 2 birthday parties and maybe had 3 after school play dates. In middle school, the loneliness took a turn to the dark side that involved depression and self harm.

It was a very difficult time for all of us.

Birthdays in this period were stressful for her because she couldn’t think of anyone to invite to her party. Of course, there was an option to not have one at all – but that was even more depressing.

We sought help, and found a number of resources that made a huge difference in her life. I will write about those another time, but just know that we have come out the other side stronger than I could have imagined.

In those dark days, I wondered if there would ever be light in her life again. 

But here we are, planning a Sweet Sixteen. She has so many friends now that the thought of inviting them all over for a “blow out” party seems like it might be too much noise and mess. She is leaning toward a fun day with friends that mean the most.

Whatever she decides, her dad and I will be there to celebrate this milestone and savor the smile on her face.

 This post was originally published on WorkingMother.com on November 28, 2011.

Say goodbye to the pink fan

The other day I had a handyman come over and replace the ceiling fan in my daughter’s room. The fan was in good working order, so he was careful with it. He placed it gently in some Styrofoam packing material and it sat in my living room for a day before finding a new home.

We have been planning to replace that fan for months. Over the summer, my girls and I took on a massive redecorating project. I had to pack up my entire home office, including the huge closet of office/craft/sewing/misc stuff and move everything to the living room so the office could be repainted. Once three walls were lavender and one was a dramatically dark blue, my 12 year old could move in and start decorating.

Once her room was empty, it was repainted for my 15 year old daughter, the artsy one. The walls in her new room are deep purple, lime green, bright cerulean blue and … wait for it… black chalkboard.  An entire wall available for friends to graffiti to their teenage hearts’ content, and believe me – that is a lot of graffiti.

With the colorful walls and the ironically black bedding, it was clear that the pink ceiling fan with flowers and butterflies was affecting the overall chi in the room.

So the fan went across the street to the young family with the little girls age 5 and 3. My husband dropped it off and there was quite a squeal from the 5 year old. “Mommy! That for my room?”

Honestly, I had no problem with this entire plan until the fan was gone. Something about watching that little girly-ness leaving forever left me a little sad. It is not like the fact that my girls are growing up was a secret. In fact, the evidence is in every corner of my life: homework that involves medieval politics, the miniature Sephora store in my hall bathroom, the bras of every size and color going through the wash each week…  

But this weekend I just had a feeling that life is shifting into fast forward.

My oldest will be 16 next month. She will not get a driver’s license on her birthday, but she will soon. In April, my “little one” will be 13. She does not have any interest in boys just yet, but she will soon. Instead of the hiding presents from Santa Claus, we have planned a family trip to New York for Christmas break that includes tickets to Wicked and lots of shopping. Last summer we visited a college out of state (my alma mater), this summer we will visit a few more.

I don’t have any regrets about being a working mom. I have been incredibly lucky to work at home for most of the last 10 years. I get a lot of time with my daughters and I am lucky that they think I am pretty ok to hang out with most of the time.  They are interesting people to talk to and I like that we can have deep conversations about life, politics and the economy.

“It’s all good,” I try to remind myself. This is what I have been working towards. But I can’t help it, there are tears in my eyes.

This post was originally published on WorkingMother.com on November 15, 2011.

When I look in the mirror

I sat on the bed and held Becca while she cried. I smoothed her hair, made soothing sounds and told her it was ok. Inside my heart was breaking for her. Between sobs she poured out her heart.

“I know there are other kids that don’t have as much as I do. I know that I am so lucky because I had you and daddy and you love me so much. But when I look in the mirror, I don’t think I’m pretty and it makes me feel so bad.”

The awkwardness of 12. That feeling that you are the only person who doesn’t have it together. She is noticing her body for the first time, really, and noticing that it is changing. Although at this point, it hasn’t changed much. She has always been petite, always the shortest of her friends. At 12 years old she is barely 65 pounds – everything about her is small and fairylike.

Then she entered the Junior High Girls Locker Room and the self image doubts entered right behind her — along with a lot of girls farther along in the development process.

I remember those days. To be honest, I can’t say they are fully behind me. I have a great job, loving husband, sweet friends and wonderful family but the number of the scale can ruin my week. As a mom, I have tried to keep my own body issues out of the spotlight. I don’t go on crazy diets or constantly talk about losing weight. Instead I have emphasized a desire for more energy by exercising, or choosing to cut out sugar.

I really thought Becca would not fall down that rabbit hole. But there we sat on her bed, starting a new phase of our relationship. She is looking to me for emotional support. After years of saying that it’s the beauty inside that really counts, I need to help her learn feel good about her outside beauty, too.

Have you had this conversation with your daughter? What did you say?

This post was originally published on WorkingMother.com on May 18,2011.

I shouldn’t be writing this

Today I am working at home for a couple of hours while Lizzi is at Lacrosse practice. I didn’t finish writing my articles yesterday, so it is a good thing I have a little quiet time. Although the fact that I am writing this post and not my articles probably means I am making the wrong choice.

Not the first bad decision I made today. Becca was late to school and it was my fault. Becca tends to hold on to things like this – not blaming me, just upset that her day got off to a rocky start. She was only a few minutes late, but they are taking SAT’s today and she takes those things very seriously.

SAT’s in Junior High? Really? I KNOW, RIGHT! But yes, they are – I think they start now so that when the kids take the real test there is no imtimidation factor left – they have done it so many times that it is easy-ish to them. I hope that works for her. Girlfriend wants to go to Stanford so she better have great grades and test scores to qualify for financial aid.

She is a pretty great kid, I have to say. I think if she wants to go to stanford, that is where we will find her in a few years. Her ability to set her sights on something and achieve it is pretty scary for someone so tiny.

Anyway, I should probably open my work computer, sign in and write that article.

Gratitude

Yesterday I was sitting on the couch reading Facebook updates and one friend posted a link to a blog that I often read but had not checked in a while.  The lovely and talented Tara Whitney participated in a gratitude challenge and posted the results here.

I decided to be a copy cat.  I do that lot, see something and think — WOW, I should totally do that.  Then I don’t, I forget and well… it never gets done.  Not this time, I tell you!  I got right up, grabbed my camera and took shots of 5 things I was grateful for.

HOWEVER – I am not a professional photographer and it was already dark outside when I took my photos so there was absolutely no natural light in my house.  It is all about the flash-shot, but I got it done.

This was a really good weekend with so much to be thankful for that I am just going to go with the crappy photos and focus on the memories they represent.

Number 1:

gratitude 1 

I am glad my Becca is happy and comfortable in her own skin.  I love her creativity, her self expression.  I love that she watches cooking shows with me and has an awesome attitude about trying new things.

Number 2:

gratitude 2

I had just snapped the photo of Becca and Lizzi walked up to give me a hug.  She has been giving a lot of hugs lately and I cherish every one. I love that Lizzi is being goofy here. 

Number 3:

Scott.  Ok I took a photo of him that was so bad I can’t even post it.  He was at the end of the hall, it was dark and you can only barely make out that is was him at all.  I am so grateful that he was able to take his birthday off from work.  He is leaving on a business trip today and will be back on Thursday, but it was so wonderful to just get to spend the day together as a family.  See a movie, play Guitar Hero, cuddle on the couch watching Mythbusters…  I love that he is just so great at being a husband and a dad.

Number 4 and 5:

gratitude 3

Number 4 is the flower.  It was a gift from the Fetterleys, brought Saturday evening to Scott’s birthday party.  I am so grateful to have friends that love last minute parties and love me even though I gave only 24 hours notice of the event.

Number 5 is the clean kitchen behind the flower.  Mitch and Debbie were her today.  I am so grateful to have them come every 2 weeks, that they love my dogs and find them charming, that my island sparkles when they leave.

So those are my 5 for the day.  What are yours?