Independence and Self-Advocacy

Independence and Self-Advocacy

Many years ago, I read a book by Jennie McCarthy. It was about her son and his journey with autism.

Throughout the book, she referenced that her son is now “recovered” from autism.

This book came out when Elizabeth was 7 or 8 years old, and we were working so hard on our own journey with her global dyspraxia and sensory processing disorder (SPD), and I found myself so intrigued by this phrase that I had not heard before.

Recovered?

What does that word mean? And how did she know it?

What made me focus on this phrase was how it was used in a determined and somewhat non-negotiable manner.

But what made him recover and others not?

Phrases and terms like this can mean one thing to one person and another thing to a different person.

I think that phrases like that area open to personal interpretation.

Since every person with special needs is unique (and has their own strengths as well as well as things they struggle with), phrases like the above cannot be taken as absolute for anyone.

There are other terms that are not absolutes either such as independence and self-advocacy.

Just because your child is still working on a skill does not mean he or she is still not independent.

Or, just because your child cannot ALWAYS speak up for themselves, does not mean they are not self-advocates.

To me it is all a gradient, our children are somewhere on the gradient towards independence and self-advocacy.

Instead of waiting for us to reach the ultimate goal, we focus on the teaching that we did (and do) that helps us grow toward these goals.

Because knowing that you are working toward the goals and recognizing successes along the way is important, as well as knowing that you will keep working each day.

This mindset is the first tool needed to help your child grow toward independence and self-advocacy.

With that being said, how did we help Elizabeth grow to her current level of independence?

I will tell you some of the things we did. First, however, let me give you a thumbnail about Elizabeth.

She is 22 years old, was non-verbal until age 5, she has global dyspraxia and sensory processing disorder (SPD), she has been in several therapies of some form since she was 2.5 years old.

Here are some of the things we did in Elizabeth’s life. Please know that these are the things WE did for Elizabeth. Not all will fit your needs, but my hope is that some will.

Talk

We started off talking before she could even talk back. We would tell her what we thought of her day, what we liked or what we thought could have been better.

Sometimes, this was a minute or two, and other times, it was longer. But these early chat times laid the groundwork for having more substantial chat times as she became verbal and as life became more complex.

During these chat times, we would talk about behavior, safety, friends, speaking up for herself (self-advocacy), actions, fears, and so on.

Before the world got really big for her, we started talking about the WHYs of what she did or didn’t do in a day to help her process the day’s activities.

Sometimes we would use a white board and colored markers to draw a picture to make a concept more real.

One time we used 4 different colors to illustrate how to cross the street safely.

Each day provided things for us to talk about to build in independent thinking about life.

Social Story Books

We started using one of these in our chat times as well as when Elizabeth was with her tutor.

There are so many great ones available now by simply doing a search for them.

The one that we used, and that provided the greatest success during her elementary school years, is called Taking Care of Myself by Mary Wrobel.

We used this book as a starting off point for topics not yet covered in chat times before.

From personal care to safety topics this book covers it all and in an easy way for younger children to understand.

There is now one for young adults, but when Elizabeth was in middle and high school, we used Social Skills Activities for Special Children by Darlene Mannix to help us cover topics that fit her age group better.

The obvious purpose for us with the books was to teach the independent skills.

But, it was also to learn which ones needed more reinforcing or which ones were so important that we needed to break them down into steps to teach them to her better for her to process the information in the best way she learns.

Charts

We started making these to help reinforce the concepts or independence skills that were very important.

We would write down the skill, the steps needed to do the independent skill, and then adjust as needed: How to clean, how to dust, how to handle a trip to the dentist.

It is amazing to me the number of steps (and actual thinking) involved to break down what seems to be a simple skill or concept. Once you do that, it is great to put it on paper and keep it to reference later and reinforce the skill.

After typing them up we would put them together in a composition notebook to use and review as needed.

Some of the examples from early on were the steps needed to wash your hair or empty the dishwasher.

A current one is a list of some of the phrases one would use at work when you need something to do.

The charts grew and changed with her age, need, current activities or interests.

Our composition notebook is on the table as I write this and Elizabeth knows to go look at it when she needs a bit of help to do a task, this also leads to her independence.

We also have smaller charts for the car.

These are the things she needed to remember PRIOR to her going into a certain place.

So, for example, if she was going to church, the chart would list the things she was to remember to make her as independent and appropriate as possible.

This included finding a seat quietly or how to go up to communion.

As simple as these may seem, her struggle is with the initiation and follow-through of the skill.

So, reviewing right before helps reinforce what is expected and helps her succeed on her own.

Things That Occur Daily at School

I have always been a big proponent of communication.

We started a communication notebook (and check off list) to use for the school.

This way we would know what she did well that day at school and what she may have struggled with. Did she pack her backpack herself, did she ask for help when needed, etc…?

These communication sheets helped me to see what independent topics or skills needed to be talked about or added to our charts.

I liked that what we were focusing on was current and not outdated.

As Elizabeth got older, it was helpful to see what others felt were her needs when she was on her own.

Making sure I write it down and know it will not be forgotten, which, for me, means less in my head and more on paper to help keep me calm.

Charts on Phone

Now, with a nod to technology (please remember Elizabeth and I have been at this thing called life a long time before all this was an option), we downloaded a notebook app on her phone to help grow her independence.

On it we put down the “how to’s” for skills like paying a bill in a restaurant or what to pack for a trip to the gym.

We keep adding to it and adjusting current ones but the great thing here is that her using the phone is an age appropriate thing.

Again, her dyspraxia makes initiating the steps to do a skill a challenge so having the information right there helps her a lot!

She also has all of our numbers in her contact list on her phone and knows how to call or text us.

She has been taught the safety importance of keeping her phone charged and she does so each night.

Advocacy for Self-Provide Phrases and Suppports

We have taught Elizabeth to find her “go-to” person in any and all situations.

We never go to or leave her at a place without this key thing.

The “go-to” person is the person she knows will be there to go to for any help or assistance.

So, if she is anxious and can’t remember how to do something, she can go to that person and ask for help.

This way she knows she is safe and that she has support, if needed. She knows who the person is and they know as well.

Elizabeth has also been taught some key phrases to use if needed such as “Please help me do this” or “Teach me how”.

This way she can advocate for herself as well as being as independent as possible.

Encouragement

The littlest accomplishments were celebrated. The littlest steps were praised.

These little things, if praised and nurtured, can grow into big successes.

We celebrated them all with Elizabeth, and still do.

I learned early on to do this. Is it always perfect? No, it is not but the independent skills are in there to grow.

So Where Is She Now?

She is at a college certificate program where she has a “buddy”, her go-to person, with her. She is taking one class and has two internships as well.

She has her “go to” person at each place. She has a part time job at a catering business. She has several go-to people there. She is loved at work and she loves them.

She does jobs around the house, exercises, and uses a daily schedule to help her know what is coming next as well as to allow her to ask question about the things that are planned.

We use a weekly schedule to know what is coming up each day as well as allowing us to chat about her feelings on something new or anxiety provoking. We make the schedule on Sunday and talk it through then and as needed.

Are we all done? No, not by a long shot. She is a wonderful work-in-progress but her independence and confidence are always growing.

So as you begin a new school year, I hope some of the things we did will help you as you grow your child’s independence.

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This post originally appeared on our September/October 2019 Magazine

Independence and Self-Advocacy

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