Tuesday, July 21, 2015

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?

Monday, July 13, 2015

The Liebster Award

The insanely witty Jennifer aka “Full Spectrum Mama”   has graciously nominated me for the Liebster Award.   

This award was created "by bloggers- for bloggers".  The object is to nominate those who have written amazing blogs in order to honor the blogger and spread the love.

And so, without further adieu, here are the rules.


Thank you, Jennifer Brunton, for nominating me for this award.  I feel as if you have been right there beside me throughout this blogging adventure.  Your blog was the first one that I read after my son’s diagnosis where I was actually able to laugh.  You have a way of adding humor to each of your posts without lessoning the impact of your message.  I always come away with a new perspective after reading your work.  Thanks for sharing Full Spectrum Mama with the world.  We are all better for it


1. On a scale of 1-10, how seriously do you take yourself? (How do you feel about that?)

I’m going to give myself an 8- as in way more seriously than I probably should.  How do I feel about that?  Honestly, I envy those Type 2 “go with the flow” people who laugh easily and often.  I’d love to know their secret.

2. Let it go or get it done?

See question one.  Get it done.

3. All-expenses paid vacation with free and actually effective childcare, where appropriate/necessary: what are the details – where, what, etc - for you and yours?

This is a tough one.  There are so many places that I’d love to explore.  I’d probably say a tour of Europe- for as long as I could.  I’d make the rounds- Ireland, England, France, Italy, Greece.  So much history- so much beauty!

4. What is the thing you worry about most?

Mainly if the decisions that I am making for my son are the right ones.  I constantly think and rethink decisions I make on his behalf. 

5. What is your favorite thing about yourself?

I love being a teacher, in the sense that I can pass on something that I have learned to others and to have the privilege of watching the "lightbulb moment" happen.  I love seeing the impact that my support has on others.

6. Off the top of your head, what are your four best-loved books?

1)      Little Women
2)      Les Miserables
3)      Laura Ingalls “Little House” series
4)      Where The Red Fern Grows

7. Same for movies?

1)      See above
2)      Shawshank Redemption
3)      Harry Potter series
4)      Princess Bride

8. Three last meals, breakfast, lunch, dinner (this includes dessert, duh): go!

         Breakfast- waffles with blueberries
         Lunch- leftover chicken avocado wrap from Longhorn
       Steakhouse (I'm on vacation)
Dinner- chicken salad sandwich and cheddar bacon potato. Cherries for dessert. 

9. What do you miss from the past?

         Time with family and friends

10. What are you looking forward to today?

    Catching up with said family and friends J


1)  Full Spectrum Mama has nominated all of my Sensory Blog Hop blogger buddies, but I’d like to thank The Jenny Evolution  for our monthly blog hop sessions.  I’ve learned so much from these ladies and appreciate the opportunity to share my thoughts with others every month.

2)  Jasmine, my cousin extraordinaire at Coffee and Defibrillators.  You are a survivor and an inspiration.  I wouldn’t be blogging if it weren’t for you!

3)  My old friend Linzey at Seiber Photography.   Not only are your photos amazing, but I love your passion for creating sensory-friendly photo sessions for individuals with special needs.

4)  My friend and colleague Jen- aka the “Go To” Teacher.  You are funny and brilliant and I always learn so much from you!

5)  A fellow autism mom over at Momtisms.  Her witty stories of her boys keeps me laughing every day while reminding me that I am not alone.


Here are mine.  Ready...and....go!                                              
   1)  What book are you currently reading?
  2)   If you could spend 24 hours with one person (living or otherwise) who would it      be?
  3)    What is your favorite saying or expression?
  4)   What is your biggest pet peeve?
  5)   Which of your accomplishments makes you the proudest?
  6)  If you won a major lottery today, what’s the first thing you would do?
  7)   Who inspires you most as a writer or artist and why?
  8)   If you could wave your wand and change one thing, what would it be?
  9)   What’s one thing that very few people know about you?

10)     If you could choose one superpower, what would it be and what would you do with it?

Wednesday, July 1, 2015

What He Needs

"You never understand a person until you consider things from his point of view."  -Harper Lee

How Much is Too Much?

Lately I’ve noticed a few videos and articles of a certain type creeping up on my Facebook newsfeed.

One article showcased “kids crying for the funniest reasons ever”.  It featured a set of pictures showing children crying because “someone broke his cheese in half” or a little boy sobbing while wearing noise canceling headphones because “we took him to a Justin Beiber concert”.

I used to think posts like that were funny.  That is, of course, the intent.

Now I look at the tears streaming down the child’s face in the picture and wonder if the child is having a moment of sensory overload- but no one even knows it.

And then, there are the videos.

These videos are not intended to be funny.

These videos- shot by the parents- show the explicit and painful details of a child at his most vulnerable- during a meltdown.

These videos are too painful for me to watch.

They are often justified in the name of providing support to other parents or as a parent’s desperate cry for help.

And I get the need for support- I really do.

But I don’t believe that “support” should come at the expense of the child.

I also don’t believe that the “support” will be found by uploading videos onto YouTube.

It starts innocently enough.

It is so easy to share the cute photos and videos of our children on Facebook. 

I do it all the time.

It’s fun to see their sweet smiles.

It’s amazing to be able to watch the babies of my childhood friends “grow up” online- even though I’ve never met them in the real world because we live half a country apart.

But lately I’m pausing more often before hitting the “submit” button.

I’ve started asking myself if this is a photo my child would feel comfortable sharing with the world one day when he grows up. 

As parents it is our job to make decisions on behalf of our child.

But our decisions to post things online will have repercussions far into their adult lives.

Privacy, Please!

Our children are not accessories nor objects. 

They are human beings deserving of dignity and respect.

And it is our job to protect them, especially when they are at their most vulnerable.

I’ve certainly experienced moments when my child’s behavior drives me to distraction.

I understand the need to vent and let off some steam to someone.

And so I call a trusted friend or family member.

I talk to my husband.

I meet up with a friend at Starbucks during those rare moments when I have a free hour.

I don’t videotape the episode and hit the “share” button with the world.

Behavior is Communication

When our child is having a meltdown or acting in a “socially frowned upon” manner, we need to stop and ask why.

First- we need to ask if this “socially unacceptable” behavior is hurting the child and/or others.  If not, then it’s probably not worth worrying about anyway.

Believe me, I completely get the frustration and even the embarrassment.

But it’s not about me.

We need to shift our perspective and consider the behavior from the child’s point of view. 

If the behavior does need to change (because it is causing potential harm to the child and/or others), then rather than focusing on how the behaviors are impacting us- we need to change the question.

We need to ask- What need is this behavior fulfilling for the person?

All behavior happens for a reason.

Even the most seemingly random behavior has a purpose.

It may just be that the behavior was slowly building over the course of the day until it reached the point where it spilled over in a moment of sensory overload.

It could be that the environment is simply too overwhelming, for a variety of reasons.  Remember- your experience is very different from your child’s.  Pause- look around- and consider the situation from the child’s perspective.

Or it may be that a circumstance that usually wouldn’t faze the child will suddenly be too much to handle if the child is either emotionally or physically tired. 

We as adults are the same. 

Think about the difference in how you respond to your child when you are running late versus when you are heading out on a leisurely morning.

All behavior serves a purpose.

The Endless Question

Ben tends to ask the same questions over and over.

This summer, the question has been, “Are you my mom?”

He knows perfectly well that I’m his mom. 

I’ve tried answering playfully (“No- I’m your aunt's cousin's sister"), but I’ve noticed that it is no joking matter to him. 

Since Ben is taking the question seriously, I decided that I need to also.

I started thinking about the times when he asks the question.

Usually it’s when we are in a new place or if we are with people who are unfamiliar to him.

I thought about what Ben really wants to know when he asks the question.

He wants to be reassured that I am, in fact, his mom. 

He wants to hear that I will always be here for him. 

He wants the security of knowing that I will never leave.

And so, when he asks the question, for the umpteenth time, even if it’s in line at Target and the shopper behind me is raising an eyebrow and wondering who knows what, I have found my answer.

“Are you my mom?”  he’ll ask.

 Am I your mom?” I ask with a raised eyebrow.

 “You’re my mom,” he answers with relief.

And, rather than worrying about how his behavior appears to the outside world, I’m choosing to focus on what the behavior is telling me that my six year old boy needs.

And, sorry, there will be no videos on You Tube to show for it.