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.

So it begins

Its the first Sunday night of summer vacation and we are all relaxed after a busy-fun weekend.  This time of year is always busy since we have the end of school excitement coupled with our birthdays.

This year, our birthdays were really special.  On Thursday, my wonderful girlfriends took me out to dinner.  It means so much to me that they carved time out of this busy week to make my day. 

Saturday night I surprised Scott a little.  He knew people were invited to come over, but he didn’t realize how far I had sent the invitation.  When Mike came through the door, he was floored.  When Dennis and Scott R. arrived later, it was really a party for him.  A great night for him to spend with a few fun friends.

It’s funny with friends, you know.  There is that part of your brain that wishes everyone was happy and lovely to everyone all the time.  That part that wants everyone to just get along.  This weekend I was also reminded how delicate that balance of friendship can be – that we can love many different kinds of people, but they do not necessarily love each other.

And that is ok.  We don’t live in a perfect world and not everyone will embrace around the dinner table. 

I have to remember that it is ok.

It gave me a certain insight to Lizzi’s stress this school year where her friends are concerned.  For the first time in 3 years, Lizzi had friends at school.  People who looked for her at lunch time, invited her to sleepovers, texted her 20 times a day… Some joy that we were all wondering if she would ever get to experience. 

But then some friends decided to not be friends with each other.  One friend started ‘dating’ another’s boyfriend. Some friends teased another friend. One friend started acting crazy, another friend seemed to be drifting away.

For a kid with difficulty understanding social cues, these friend dynamics are intensely confusing and more than a little bit overwhelming.  She began to feel that her little world was falling apart.  And that it was somehow her job to keep everyone together.

That’s a lot of stress to carry around.  And it really took a toll on her emotionally stability.

Teachers often comment on how much kids grow over the summer, certain that it is the summer sunshine that makes them sprout.  Lizzi seems to have topped out in the growth department but I am hoping that this summer will help her to grow emotionally. 

The nice thing about summer vacation is that the number of people you have around on a daily basis is significantly smaller.  Only a few friends together at a time — rather than a few hundred looking for seats at lunchtime — and a little more adult supervision of interactions. 

Even as an adult, managing friend personalities can be a challenge but at some point you simply remember that we are all adults and everyone will act accordingly. 

But kids are kids. And middle school is probably the hardest time in childhood. 

We have a good foundation.  That is what the last 13 years have been about.  The therapy appointments, the diet, the meetings with teachers to figure out what classroom support was required to make her a successful student. 

So now that she is doing well in the classroom, we need to focus on how to make her successful when the bell rings.  We didn’t make it this far alone and so we have started considering what kind of professionals we will need to turn to for this next stage of development. 

Now that the frantic pace of year end activities are over, it is nice to think about tackling the next challenge.  Time to make some lists, make some calls and move forward.

So… how is it going?

Yesterday was an elliptical day.  I reminded Lizzi to spend 30 minutes sweating and, in typical teenage fashion, she tried to come up with other (less exertive) alternatives. 

I needed to work on the Fair poster so I had no patience with her alternatives.  I shot them down and insisted she just get on the cursed machine.  On she went, but I suspect she did an easy program.  That’s OK, for right now. I just want her to do it.

How about me?  Well I finished the poster then went straight to the meeting, then came home too late to do it.  I was sure Lizzi noticed.  When I tucked her in to bed that night I brought it up.  I told her I was really proud of her for doing it, even though she didn’t want to.  I pointed out that I did not get mine done.   Then I promised to do my 30 minutes BEFORE having coffee.

You heard me.  Before coffee.

Unfortunately, I overslept so I had to make lunches and drive Lizzi to school before exercising. 

And before coffee.

I feel pretty good, I have always felt smarter when I have regular exercise in my life.  Again — why is it so hard for me to get up and do it? 

I won’t worry about that too much .  I have my motivation now.

Motivation Found

When I first became a mother, I learned that I could exist on less than 3 hours of sleep.  Even if those three hours were not in a row.  I learned that I could make dinner with one hand while soothing a collicky baby in the other.  I learned that even with diligent scrubbing, there is no such thing as a Stain-Free carpet.

A few weeks ago I mentioned here that I needed some work out motivation.  I own a very nice elliptical machine that sits quietly in my home office.  In fact, I could reach out and touch it from my chair right now.  But for months and months it has sat unused. 

elliptical

 

 

 

 

 

 

 

 

 

I know that exercise is important.  I know that eating healthy is not enough. I know that I was not born with a fast metabolism and if I hope to have any level of health in the future, I need to create a healthy habit for myself.

All of that knowledge has not pushed me into regular exercise.  I thought Harry Potter would help, but, alas, even the promise of re-reading of the series has not been enough.

Then something happened that pushed me off my lazy butt and into athletic wear.  I huffed and I puffed and I did it. I am confident it will continue this time, too, because I am not doing it for me.  I am doing it for my daughter.

Lizzi reading at Willow Glen Convalesent Hospital

We have all read about the psychological health benefits of exercise, that cardio will release endorphins which reduces stress and improves mood. Lizzi needs that.  She has a tendency to perseverate on negative feelings and I am worried about where that will lead. 

Kids with Asperger’s are prone to depression.  While, yes, there are medications that can help they all come with side effects and some with warnings.  We may need to go there, but maybe not.  Since she was first diagnosied we have tried to go with a natural therapeutic approach.  Between removing milk from her diet, OT, Speech, and a focused family effort to support her she has made tremendous strides.  She has accomplished so much more than anyone thought she would be capable of.

But being a teenager is tough for everyone.  For someone with AS it is significantly more difficult.  We have have reached a point where diet and love are not enough. 

We have added Karate since that tends to build self-confidence.  Let’s face it, getting to punch a bag and yell is a great stress reliever.  On non-karate days she needs to spend 30 minutes on the treadmill. 

Needless to say, I gave her full license to nag me about getting on there too.  She likes that part.

Scott and I have always tried to be good examples for the girls.  Treat each other with kindness, have fun, hold hands and approach life with an open mind and a good attitude.  But now she really needs us to see us with exercise in our lives.

So yeah, motivation has been found.