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.

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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.