Monday, April 27, 2015

Day 27: Acceptance is Unconditional

Ben getting his Bad Kitty book signed by his favorite author, Nick Bruel.  Ben's autism doesn't stop him from living his life every day.

Today Ben and I took our first trip of the season to the neighborhood pool.

There were several families enjoying the water, so we chose the side of the pool that was the least crowded.  There was just one family – a mom, a dad, and their little boy and girl.  The boy looked to be a little bit younger than Ben.  He wore his arm bands and splashed on the steps by the edge of the water.

When we swam near the family, the mom said brightly to her son, “Look, a little boy your age.  Why don’t you say hello!”

The little boy stared off into the distance, but Ben obliged and said, “Hi, I'm Ben!” 

Still, no response from the other little guy.  His whole body was turned towards the fence, and he was staring at the wooden owl that was supposed to scare the other birds away.

The mom tried to engage again, “Our new friend is talking to you.  Can you tell him your name?” 

Still, no response.

“He’s only starting to have conversations with others,” the mom said apologetically.  She told me that her son was five. 

The familiar flash of recognition registered in my mind, especially as I watched the boy flapping his hands and running off moments later, his mom chasing behind as he ran from the pool area. 

The mom was pretty busy after that, chasing after her son, encouraging him to try to swim in the water, so we never had the opportunity to talk again.  If we had, I may have asked her more about the Pre-K class that she said her son attends.  I may have gently prodded to see if she recognized what I could not help but see in a few short minutes of time with him- characteristics of the spectrum.  I am not a doctor and so I would not have offered my opinion of a diagnosis to her, but if she had asked, I would have pointed her in the direction of professionals who could tell her more.

It has been nearly two years since we received Ben’s diagnosis.  I’ve grown a lot in my understanding of autism but, more importantly, in my understanding of how to be a mom to Ben. 

Here are a few things that I would have told that mom if she had asked about autism- and I wish someone had told me two years ago when I was first learning what it meant for our family.

1)   Autism is not the end of the world.
Too often, when a parent receives the autism diagnosis, they are made to feel like the world is coming to an end for their child.  They paint the picture of a bleak future.  Some parents have been told that their child will never graduate from high school, never go to the prom, never live on their own.  Many, many autistic individuals have proven these so-called experts wrong.  Don’t listen to the doom and gloom prophesies.  Yes, the road is a hard one.  But no one knows what the future will hold for your child.  Don’t limit their possibilities- they are capable of far more than we can imagine.

2)   Autism is not going away…and that’s okay
Autism is a pervasive developmental disorder.  This means that it impacts every aspect of a person.  It is impossible to separate the autism from the individual, much like a person’s hair color or eye color.  You can change your hair and eye color, but the original color will still remain underneath.  In much the same way, a child may appear to “change” through therapy, but they will always be autistic.  Some people say that they hate their child’s autism, and, while I understand where the anger is coming from, we must be so careful with our words, because our child will hear this as “we hate him” and they will learn to feel like a burden.  I choose to look for the many strengths that Ben’s autism brings him, including his amazing memory, his intense focus on his interests, his love of numbers, and his unique perspective on the world.  I love him for the person who he is, autism and all!  We work through the tough parts and we seek to make the challenges less- but, through it all, I make sure that Ben knows that he is loved, no matter what.

3)   Autism is a spectrum
There is a saying that when you’ve met one autistic person, you’ve met one autistic person.  Before Ben’s diagnosis, I knew very little about autism.  Like most people in my age group, I associated autism with the movie Rain Man, because that was my only real reference point.  Even as a teacher, I never encountered a child on the spectrum in my classroom.  I think this was why it took awhile for me to recognize the characteristics in my own son.  They presented in different ways then I had heard about, and so it was easy to dismiss them.  Now, I am much more adept at recognizing the signs in others and I realize that there are many, many people in this world on the spectrum, children and adults alike, some diagnosed and some undiagnosed. 

4)   Autism alone does not define my son
Ben is so much more than his autism diagnosis.  One thing that I understood early on is that Ben is still the same kid that he was before he received the diagnosis.  (If anything, he's even more awesome now!) The reason that we agreed to the diagnosis was to help define his unique strengths and challenges so that those who work with him would have an understanding of the reasons for his characteristics and behaviors.  It allows us to set goals for him that can be addressed through specific therapies and interventions.  Some parents choose to not put the label on their child because they are afraid that society will treat their child differently.  Others simply refuse to accept that their child could be autistic.  However, the fact remains that if a person is on the spectrum, they are autistic whether you choose to formally add the label or not.  And, as such, they will most likely have behaviors that set them apart as different anyway.  I would rather educate people and help them understand why Ben acts a certain way, rather than have him labeled a “behavior problem” or an “odd kid”.  Sadly, there have been times when he has been treated differently when people learned about his autism, but it has also been a great learning experience for many people.  He has played soccer, taken part in theater classes, attended swimming lessons, flown on airplanes, cruised the Bahamas, and done many, many other things that many adults haven’t even experienced.  In short, he’s living a happy, full life.  Autism brings its own particular challenges, but it isn’t stopping him from living.

5)   Keep the worries in check

I’m learning from my other mom friends that worrying comes with the territory of parenthood.  Moms of special needs kids have their own unique set of worries.  We worry about our child succeeding at school.  We worry about bullies and if our kid will have friends.  We worry about our child’s future as a grown up.  We even worry about who will take care of our child after we are gone.  I have learned that the worry will consume me if I let it.  Thankfully, I’ve met some great moms who also have kids with special needs.  They are great listeners and can offer advice when I need it because they truly get it.  They have been down this road too.  When I feel the worries setting in, I turn to them, and then I get busy living my life, spending time with my amazing kid.  For, as one of my mom friends says, our kids remind us that they are awesome no matter what!

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