Forgetting Milestones and Learning to Measure Progress…a New Way of Thinking! #AutismAwareness

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As I sit here engulfed in April, Autism Awareness month, I reflect on our journey with Autism.  I use the word with and not through, because at least for our family Autism is always with us.  It may change directions, but we never fully go through it, as if it would actually end.  Like the majority of our community, Autism is always there.

As the days of April tick on, I take time to read all the posts, quotes and stories. I watch videos of parents celebrating the small accomplishments and I smile as my heart fills with joy. I celebrate with them as if their child was my child.  I also watch the videos and read the posts of those parents who speak only of struggles, pain and suffering. I cry with those parents whose candles are dim and their hope barely a flicker. I feel the anger from those who believe that the money so badly needed is not being shared to help those who need it the most. And, I hear the voices of those who are happy to be whom they are and who don’t want to be cured or changed.

Autism is a spectrum and every individual on the spectrum is unique.  As unique as each person is, so are their symptoms and so are their stories. I only know our story.  I can never fully feel the experience or speak of anyone else’s story or child. For our family, we started in a very difficult place.  We were lost for awhile, as we struggled to understand why my daughter reacted and behaved the way she did. We isolated ourselves for years to protect not only her from unwelcomed stimuli, but to protect us from a judgmental world outside our home. Then, we found hope.  Bree responded to therapy; it didn’t cure her, but it helped her cope. It helped her live outside the bubble of protection that was our home. It helped us regain a life again.  We were lucky and, believe me, we won’t ever forget that or take it for granted.

My daughter, on the outside, looks perfectly fine. On Facebook she looks amazing, because I choose to share her accomplishments and her good days. There are so many people who worked tirelessly to get her to those good days.  I share in order to show them that their hard work is appreciated.  I share to give hope to those who feel hopeless.  I also realize that in sharing only the good, I bring sadness to those whose children do not accomplish as much as my daughter.   I never want anyone to feel bad because of something I do or say. After all, we are a community and our community can only be strong if we work together.  We need to celebrate one another on the good days, but we need to support everyone on the spectrum every day.

If I learned anything over the years, it is that no one is going to show up at your door and say “let me help you!” We have to help ourselves when we can and we have to ask for help when we can’t. If your loved one can leave the house, but you can’t find a place for them to feel comfortable and safe, make that place.  Start networking; it’s exhausting but in the end it can be life-changing. Start a social group; reach out to other parents.  If you can take on the work involved, do it.  Nothing is easy with Autism, and not everyone will agree with you or your plans. That is okay – it is okay to agree to disagree.  We all have the same goal in the end, but if you never try, then you can never move forward.  Sometimes the plans blow up in your face; shake off the hurt and start over.  The most important thing I have learned is “We are not alone!” Find your support group. It may take visiting many different Autism groups online or locally, but they are out there.  I have found a home among the special needs community.  Parents of children with challenges all want the same thing.  We all want what everyone else wants for their child.  We want our child to live a happy and fulfilling life.  We just have learned that life may look a little different than we thought.

Find your home, find your community and support one another. You don’t have to agree and it is okay to look for another community.  Find the one that fits your needs.  Remember, not everyone’s life will look like your life.  If you can, be a friend to others always, but especially on their bad days.  You don’t have to fix their problems; you just need to help them know they are not alone.

If you believe April is a month to celebrate your child/children with Autism…celebrate your child.  If you believe April is the month to light it up blue…light it up blue. If you hate April and everything to do with Autism Awareness month, your feelings are heard, you are not alone and let us know how we can help you.  Personally, and I only speak for myself, April is about Autism Awareness. When my daughter was diagnosed in the early 2000’s, Autism was not yet a household word.  We have come a long way since then, but as long as services are cut, people continue to suffer, discrimination exists, there’s a lack of inclusion/acceptance, and bullying still exists, awareness needs to continue. Autism awareness is not for those on the spectrum or those who love them; we are all very much aware, but it is there to help educate those who walk a different path than ours. We need to work as one community and support all the members on the spectrum.

-Mary Ellen Bogucki

Mary Ellen Bogucki is the mother of Breanna (Bree.) Bree is a nineteen-year-old college student, runner, singer, special needs advocate, Special Olympics athlete and Global Messenger.  Bree has been diagnosed with high-functioning Autism, OCD, anxiety, situational depression and sensory processing disorder. Follow along as her mother describes where Bree began and how she arrived where she is today.  Mary Ellen will explain what helped Bree improve, along with some mistakes they made on their journey. By telling their story, they hope others will find hope and comfort.  Bree currently is attending Harper College in Palatine, Illinois pursuing an Associates Degree in Human Services.  She is a member of their Cross Country and Track teams and the President of the Access and Disabilities Success Club.  Harper College offers a Transition Autism Program (TAP) to help those with Autism transition from high school to college.