Being her own advocate: Growing up with Learning Disabilities

Imagine that you are afraid of public speaking, I mean really terrified of it. And yet, had a job that required you to address large groups everyday. The people around keep saying that it will get better, that the support is in place, that you will be fine.

But you are not. It is just that sinking feeling in your gut day after day day after day.

When you have a learning disability, walking into class everyday goes beyond a struggle with the alarm clock. It is day after day of feeling like you are dumb, that you are hopeless. The struggle is constant.

We have tried tutoring and any number of therapies, this is not a post about one approach versus another. It is about learning to speak up for yourself.

In elementary school, I met with teachers, bought books, and searched for ways to help my daughter. In Junior High the district finally acknowledged that her low Math grades were the result of a disability, not a lack of trying. Once high school started, we had a 504 plan in place to that outlined accommodations for her.

For many years, she could not admit just how badly she was struggling. We knew some, of course, it was all over her face. But learning to express the frustration came with maturity. We would have to wait … and teach.

As a mom, our natural instinct is to protect our babies. Keep them safe from harm, make their world one that is full or rainbows and happiness. When someone raises a finger against them, we go into full attack mode to defend them.

There is nothing wrong with that (well… usually) but, if I am being honest with myself, my job is to teach her the skills she needs to defend herself.

She is learning. She proactively approached her Math teacher on the first day of school to explain about her disability. She attempts every problem, but will ask for me to check her work. She takes the news that some of them (or all of them) are wrong with a stiff upper lip and says, “Ok. I will try again.” She has (mostly) gotten past the days when the frustration took agonizing chunks out of her self-esteem.

Then today happened. Today she said she almost cried in class.

The mama bear in me had been poked! A plan started formulating a in my head, what to say, what meetings to hold, what data I would need to bring… I almost couldn’t hear the rest of the story.

It turns out she was exploring her own ideas. She was gauging her feelings, and figuring out what she needed to say to her teacher. She had already weighed the idea of a 1:1 meeting and did not feel it was necessary at this time. She was building her own plan.

Our job as parents is to help them grow into strong, independent adults. She is getting there before my eyes. We will ALWAYS be here to support her, it is just a little tough to see that she doesn’t need the mama bear to defend her.

I am so proud, but I also feel the sting of tears in my eyes. The same sting all parents feel on the day when their little one heads into school without holding their hand, when they first go to sleep away camp, when they go on their first date…

I know it will all be ok. She’s totally got this.

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


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.

My Organized Teenager?

This week my 15 year old daughter told me she needed an assistant.

Really? An assistant? I mean, yes she is a busy kid with sports, church, 4H and homework to fit into the few hours of daylight between the last school bell and the 5:45 am alarm. But I can’t see agreeing to a staff position.

She explained that the assistant would keep track of all the things she needed to do and  keep her motivated to complete unfinished tasks. There is so much she wants to do, but just no idea about how to get them done.

I understood that feeling. Too many projects, all of equal priority, and a need to do it all.

Figuring how to fit everything in to your life and still be happy is a trick that all women must learn. A rite of passage we do not celebrate but should. 

And then, my usually disorganized teen surprised me. She had made a list. An actual written list of these projects and things that she wanted to accomplish. 

Was that a tear stinging my eye? 

In that moment, I was a very proud momma. She had been listening. Even with the headphones surgically attached to her ears, something had made it through. She picked up on the teachings of our tribe.

We talked about her list and how to take her “To Do” list to the next level. Think about the step you have to take in order to reach the goal. 

I was thinking about her fourth grade Science Project assignment sheet. Her teacher had broken the Science Fair process into steps, about 30 of them as I recall, and kids tackled the steps one at a time. While 30 steps may seem daunting to a 9 year old, the breakdown was really straightforward and manageable. 

Any project you want to tackle can be broken down the same way. Think about the steps involved, don’t get too far ahead of yourself. No need to panic about how you will present data before deciding on a topic. 

We picked one of her goals – reconnect with old friends – and talked about a few of the steps she needed to take. Decide on a couple of people to find, search for their phone number, ask mom (me) if we have an old email address to use. She has already searched Facebook, of course. 

Summer vacation starts in less than a month and she will have time on her hands to attack the list. She is growing up fast and soon the To Do list will include selecting colleges and picking a major. 

It is nice to know that she is grasping the basics of building a full and happy life. 

This post was originally published on WorkingMother.com on May 5, 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.

Making time to talk to my teenager

I was making dinner while Lizzi worked on a History Project at the dining room table. She had to work there because for some reason her teacher felt that in order to plan the next presentation, the group had to use a 4 foot square piece of butcher paper folded origami style into 24 sections. While I support his big picture thinking, it was an ungainly effort to make notes in the center boxes.

I had about 45 minutes from the moment we walked through the door from Lacrosse practice until we needed to head back out, pick up her friend and head to her 4H Camp Staff meeting. I started to make dinner and think about how to outline a new plan for a project at work. The timeline was tight and I needed to get back to my laptop.

As it turned out, Lizzi had something on her mind, too.

“I thought Pastor Dan had some interesting points in his sermon yesterday, but he got some things wrong, too,” she announced.

I looked up at her then back at the tomato I was dicing and asked in a non-committal voice, “Really, like what?”

“Well, like Heaven,” she replied. She then went into an overview of how she felt our pastor had included a few inconsistencies in his Easter message. She said that some people don’t believe in God because they just weren’t raised that way and maybe, he should have explained the whole you-should-have-a-relationship-with-Jesus-thing a bit differently to accommodate those different backgrounds.

“Insightful,” I replied. She is fifteen and learning to articulate big thoughts backed with reasoned, organized arguments.

I shared what I thought he meant, but mostly I asked questions. Questions that were open enough to make her think about what she believed. When she got stuck, I helped her. Filling in the blanks with my own experience and faith while sautéing the potatoes left over from Sunday’s dinner. She had some good points and I was glad to hear that she was not only listening, but processing what she heard. Of course, time seems to move more quickly in good conversations.

We were both feeling good about what was said when we noticed the time. I loaded her dinner into a plastic bowl and grabbed a fork.

Dinner in the car, again.

A few minutes late to the staff meeting, again.

But I would not have traded it for the world.

When my girls were little they needed me close by to kiss the boo boos, tickle their toes and tuck them into bed at night. Those days are behind us, but they have been replaced with something much bigger. Not better, exactly, but different and wonderful.

My girls still need me – my thoughts, opinions and insights into the world. They need my perspective on why boys do dumb things and why girls can be nice one minute but achingly cruel the next. They need to know where I stand on the issues and that it is ok for them to form their own opinions.

I never know what topic will follow, “Mom, can we talk?” but I am  certain that whatever else is on the schedule can wait.

Originally posted on WorkingMother.com  on April 26, 2011.