Why Self-Advocacy Matters #SensoryBlogHop

Ben and his Nana viewing an empty water park and making plans for the next day.  Ben is wearing wolf ears as you do at The Great Wolf Lodge.

Self-advocacy, according to texasprojectfirst.org refers to “an individual’s ability to effectively communicate, convey, negotiate, or assert his or her own interests, desires, needs, and rights.”

Self-advocacy isn’t unique to the autism community. We all must learn how to make our needs known as well as make requests based on our unique preferences.  There are examples of this all around us.  My good friend has back issues and always asks for straight chairs at a restaurant rather than sitting at a booth.  My dad makes sure to ask if a unfamiliar dish has fish in it before he eats it, since he’s allergic.  And my mom prefers lemon in her tea so she always asks for it when she orders.  Some requests are big, while others are small, but all are forms of self-advocacy. 

I wrote about self-advocacy once before here, but it has been on my mind recently because my family went on vacation to the Great Wolf Lodge, which is a hotel and indoor water park all in one.  We had a great time but, as is usual in a new environment, Ben faced some sensory hurdles during our stay.

As I helped Ben navigate through these challenges, it got me thinking about how Ben communicates his needs when I am not around.  While I am glad that Ben trusts me as his safe zone and walking security blanket, I ultimately want him to be self-reliant.  

Self-advocacy matters.  Ben needs to be able to communicate with children and adults alike.  He has  to tell a teacher at school when the work is overwhelming and he needs a five-minute break.  He needs to know how to say "enough" when a game of tag get too rough on the playground.  He needs to know which adults in this world are safe to help him when I’m not available, and how to ask for that help.

And so here are some ways that I’m encouraging Ben to be a self-advocate. 

1)  Practicing “What Would You Do?” Scenarios

Ben is at his best in a calm, predictable environment, but this is obviously not always possible.  He also tends to become anxious and panic at the first sign of trouble, whether it is a wasp circling overhead or a seatbelt that just won't click.  He relies heavily on a small circle of trusted adults to help him work through difficult situations.

None of us like to fear the worst, but I feel it is important to prepare him for what to do if he found himself in a situation where he were separated from those who trust and protect him.

When we’re out in public, like at the mall, I've started playing the "what would you do" game.  I ask Ben what he would do if he couldn’t find me and he was lost.   How would he get help?  This is very hard for him right now and that scares me more than a little.  Someone recently asked him for his phone number and I realized that my number nut doesn’t have it memorized. 

I’m going to be stepping up the safety talks as much as I can without triggering his already anxious disposition too much.

2)  Letting him speak for himself

I have the bad habit of answering questions for Ben that he is perfectly capable of answering.  Too often, I am his spokesperson to the outside world.  I’ve done it so much that when I try to get Ben to speak for himself, he’ll say, “You tell them.”  And so, I’m making an effort not to be his translator when the server asks for his meal order or when his uncle asks him about his year in kindergarten.  I do cue him at times so he knows to tune into the speaker.  I'll say, "Ben, so-and-so is talking to you." and then he'll turn and listen.

Right now, we give him lots of choices, such as what to wear, where to eat lunch, etc, within certain parameters.  This helps him recognize his preferences and learn to voice them.  Eventually, we will teach him the difference between needs and preferences so that he learns times when it’s vital to speak up (as in when he’s about to go into meltdown and needs a break) and times when it would be nice for him to have what he wants but not necessary (such as getting to go down the slide first at recess).  We're also working on when it's his turn to speak and when he has to wait until someone else is done speaking.  Tricky stuff.

Eventually, we will involve him in decisions that impact his world on a bigger scale, such as participating in IEP meetings and talking to him about his autism and what it means in terms of his strengths and challenges. 

3) Teaching him to listen to his body’s sensory needs

When Ben tells me that something is “too much,” like when he was done at water park after an hour and a half, I listen.   As soon as we stepped out of the park, he visibly relaxed.  “Ah! I love quiet,” he said.  And then I realized just how loud that park really was to him.  Rather than pushing him to have a lunch poolside with the family, we had a quiet lunch in our nice, dark, hotel room.  It gave him the energy he needed to go back and enjoy the water slides in the afternoon.  

It’s important for Ben to listen to his body, especially when he’s going into sensory overload or is on a verge of a meltdown.   We’re also working on finding ways that work best for him to calm his body down.  When he is having a meltdown, he hates to be told to take deep breaths or to count to ten.  Instead, he has told me that what helps him most is a quiet place and a deep bear hug.  And so, we are teaching him to make these requests so that he can get what he needs from others.

This summer has reminded me that when Ben does something that is new or exciting, even when he really loves it, he needs a few hours of downtime immediately after so that his body can cope with the sensory demands.  The more exciting or stressful the event, the more down time he needs.  This summer has given me a new appreciation for how demanding school must be for him, with its long hours and little breaks.  It will be that much more important to give him time to decompress in the afternoons and evenings once school begins again.

4)  Stretching him outside his comfort zone

Ben would prefer to stay where it is safe, comfortable, and familiar, which often means the security of our home.   I try to balance his need for this safety net, especially after a long day at school, with the responsibility to prepare him function independently in a world that is not often sensory-friendly. 

When we were at the water park, I pushed him past his comfort zone to try a water slide that I knew he would love.  To get to it he had to climb multiple levels of water-spraying, bucket-dumping obstacles that are designed for fun but, to him, are anything but.  Normally he would have worn his goggles, but they weren’t allowed on the water slides, which was unfortunate.  And so when he saw the multiple layers of cascading water standing between him and the slide, he tried to run in the opposite direction.  I could have let him go back to the security of the little slides, but I made a split second decision to literally push him past the obstacles in our way.  I showed him how to weave around the worst of the waterfalls.   I told him to close his eyes in the worst section as I helped him through the wall of water.  And, finally, when we reached the top and he tried the slide, he found that he did in fact love it.  As he climbed the steps to do it again, I reminded him that sometimes we have to try things, even though we’re afraid, to find out we really love them.

I’ve learned to be careful of my language so that Ben doesn’t pick up on a fearful or negative attitude from me.  I used to say things like, “Ben doesn’t like that” or “Ben is afraid to do that”.  The turning point was when I noticed Ben asking, “Mom, do I like that?”  So now I say things like, “I bet Ben would like to try that.  Peaches are so juicy and sweet.  He loves sweet things!”  rather than, “Ben doesn’t like peaches.”  By keeping an optimistic tone (even if he’s avoided the thing the past fifty times) it conveys the message that he can do it, if not today, then one day.

5) Intervening when necessary on his behalf

Parents know that we need to let kids learn to do things for themselves, even though it usually takes longer.  Whether it is putting on their own clothes and shoes or zipping up their coat, it’s important to foster independence. 

Though my goal is to help Ben to become a confident, self-sufficient adult, the reality is that he’s still six years old and there are times when the protective momma bear is going to come out.

Like when an older kid stood above us on our trip up to the water slide.  You know- the water slide Ben was afraid to try because of all the watery obstacles.  I didn’t notice the kid the first time until I felt the force of a full bucket of icy water on my head.  I looked up and noticed him grinning above me.  “Nice one,” I muttered sarcastically as we moved on, silently thankful that Ben wasn’t the one to be dunked.  The second time, though, I was on to his tricks and saw him snickering with a bucketful of water poised and ready.  I yelled up to him, “It’s not funny!  He doesn’t like it” And yet, as we crossed the rickety bridge, we both got drenched with icy water.  My boy was now howling in surprise and agony.  I looked for a parental figure and, finding none, I marched up to the boy and said in a low but firm voice, “Look at him.  This is not fun for him.  He doesn’t like water in his face but he loves this slide.  I need you to stop it.”  And, remarkably, he did. 

Ben became the master of the Great Wolf howl.  He loved the idea of "howling so loud that we wake everyone in this hotel".

And so, we take each day as it comes.  We love Ben through his successes and his moments of frustration and fear.  I am so fortunate to have family who love him as much as I do and seek ways to help support him without trying to change the person who he is.  And this, more than anything else, is why I know that he is going to be okay. 

How do you teach your children independence and self-advocacy?

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