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.

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.