Wednesday, April 8, 2015

Day 8: Acceptance is Community

Ben building with his friends during the Buddy Walk for Down Syndrome earlier this year.  

Okay, tonight I’m cheating a bit. 

I hope you’ll forgive me, but I’m copying part of a post that I wrote earlier this year for tonight’s blog entry.  

It’s been a long day but a productive one filled with school, a parent teacher conference (where I took on the role of parent, not teacher), a parent support group meeting for parents of kids with sensory needs, and a chat with a colleague/friend.  

It has been a day that has served to remind me of how many wonderful people surround my family.  

It’s amazing to think that many of these people have only come into my life in these last couple of years since Ben’s diagnosis. 

It took time before I found my tribe.

At first, raising a child with special needs felt very isolating. 

It seemed as if no one was going through what we were going through.

Other moms that I would meet during playdates would talk about their child’s latest accomplishment, whether it was learning the piano or getting a new swimming medal.  I wanted to celebrate the fact that my kiddo tried a new food and finally learned how to put on his socks by himself. 

It felt awkward and strange at birthday parties when your kid is the one in the corner, barely playing with the others, or, in my case, clinging to my side the entire time.  This was how it was at first.  

Slowly certain friends drift away.

However, in their place was a whole new community that I never even knew existed.

I have become friends and connected with so many amazing people who have helped to support us and help us grow along the way. 
Fellow parents who understand when your child acts differently during a playdate and cheer along with you when your child finally learns to pump his legs and swing at the age of five.

Fellow educators and colleagues who have long conversations over cups of coffee to help you truly understand IEPs, accommodations, and goals.

Teachers, OTs, and SLPs in Ben's life who go the extra mile for him every day and who love him for who he matter what.  They rally around him as a team in support, and I learn from them every time we meet.

I have meet a wonderful support group of parents and autistic adults both in the real world and the virtual world. 

I’ve met fellow bloggers around the world who have children with different but similar needs to mine.  

We are finding our way together.

Hearing the stories of others helps to remind me that I’m not on this journey alone. 

And now, for your reading pleasure, here is a section from a post I wrote at the beginning of this school year.  In this blog post I write about how I believe we must go through the five step grieving process after our child receives a diagnosis before we can come to the place of acceptance.  And, while autistic adults would not have us mourn for those who are on the spectrum, I think we parents must come to terms with the loss of the child we thought we were going to have in order to embrace the child that we do have.  You can read the post in it’s entirety here, but, for now, let's skip directly to the part talking about acceptance:


It will get easier over time. 

I promise. 

Some days are hard, some days feel impossible, but then there may not even be days, but just moments- moments of sheer joy and bliss, when you see that thing that makes your child so uniquely wonderful that it literally takes your breath away. 

I try to fill this blog with those moments so I can come back later and remind myself of them, to keep me strong when I need to hold onto them the most.

I wish that everyone could reach the acceptance stage. 

Sadly, too many hang on to their feelings of anger and sadness. 

They hang on to their vision of the child they believed they would have, rather than the child that they do have. 

You’ll know you’ve made it to acceptance when you start looking at things from the perspective of your child. 

When you think about how all this big, loud, confusing, and often scary world is impacting him.  When you stop to consider first what is like to walk in his shoes every single day. 

And, when you take the time to do this, then you’ll be so proud and amazed at all your child can do in spite of all the obstacles the world puts in front of him. 

You’ll want to be his ambassador to the world, to teach the world about him and others like him, so that person by person, those others will change, so that eventually society can change and see your child the way you see him, for the unique and wonderful person he is.

Acceptance is letting go of that picture that you held in your mind of what your child was going to become.  Of the person you thought he was destined to be.

Because, believe me, once you let go of your preconceived ideas of what your child should and should not become, then you allow your child to develop into the person that he or she is meant to become. 

And then, when you truly embrace the unique gifts and talents that your child brings to this world, a whole new world of amazing possibilities that you never could have imagined opens up before you. 

And it’s better…so much better…than you could have ever hoped, imagined, or dreamed. 

Your child may not be the child you expected him to be, but he is a gift to this world, with his own unique strengths and talents to share. 

And, with the right people and supports in place to help him to be his best self, you can unlock these hidden gifts and let the beauty shine through.

And then you’ll discover something that’s the most amazing part of all. 

It wasn’t your kid who needed to change the most, really. 

The one who needed to change all along was you. 

And then once you change, then you can help others to change. 

And that’s when you know you are on the way.

You’ll seek out other autistic adults, because you will know that they were once autistic children, and they know what it feels like to go through what your kid is going through.  You’ll learn that they are the true experts, because they are living it right now.  If you’re lucky, you will count them as your friends.

You’ll become part of a whole new community, new circles of people in your life who will support you and lift you up when times are difficult. 

Most importantly, you’ll find that inner peace within you. 

Not to say that you spend all of your days in a serene, zen state.  I wish.  However, even amidst the chaos that is life, you will feel this settled feeling inside knowing that, even though things may be falling apart all around you, you are on the right path, because even though you may not make all the “right” decisions, you are doing what’s best for your child in the long run.

You’ll feel a huge sense of pride in the fact that you are now part of an ever-growing movement, much like the civil rights movement in the 1960s, that is literally changing society as we speak.   That’s when you become an advocate

You may not advocate by marching for the autism cause.  You may not wave a banner, network with politicians, or even write a blog.  If you like doing those things, I encourage you to, but I want you to understand it’s not a necessary ingredient to being an advocate.

To advocate for autism acceptance is to treat your child with dignity and respect, even in the midst of his darkest moments.  This will speak volumes to all watching you, first and foremost your child. 

Every time you interact with the general public, whether at a restaurant or the grocery store, and people around you watch how you handle a moment when your child is having a hard time, you are teaching others how to model the practices of autism acceptance.  When you explain to a family member, a friend, or even a complete stranger what autism is…what it truly is…and how it’s okay… you’re modeling acceptance.

No matter where you are on your stages in this process, I wish you well. 

You may not believe everything I have to say, but consider this. 

I wouldn’t have believed these words a year ago either. 

We all have to work through the stages.

Remember, you must pass through them all. 

There is no skipping steps. 

The amount of time it takes to work through each one will be different for each of us.

But remember, you are not alone. 

Find your community. 

Find your tribe.

The internet is a wonderful place for community, but you need one in the real world also. 

And, finally, never stop looking to find your peace.  Your child is worth it.  Your family is worth it.  You are worth it.

No comments:

Post a Comment

Please add a comment here.