Walking With Drake

One Mother's perspective on autism.

Self-absorbed Mommy

I’ve been in a bit of a writing slump for several months. Granted, the holidays have a way of sucking all the energy right out of you…but this was something more. 

Lately, I’ve been really questioning why I started this blogging journey. When I lost my daughter many years ago to CHD, it never occurred to me to write.  She was so medically fragile that I don’t think I had time to think about much more than keeping her alive from day to day.  With Drake things have been different. Drake has autism, but he is so healthy and full of life.  Despite anything that we have faced or will face he has brought such healing to my husband and I.  All of that may sound like an oxymoron, but it’s true.  When you’ve lost a child and survived it takes quite a bit to rattle your cage in the future.

My instinct has always been spot on when it comes to my children.  Drake was no exception.  I knew before Drake was one-year-old that something was different. I think after the initial shock of an autism diagnosis and all the “what ifs” that come with it, most parents just get into a groove and do what they need to do for their kid, while trying to keep their sanity.   

One thing that has made me so reflective is something that someone said to me several months ago.  

“You are self-absorbed.” “I understand why Drake is the way he is.” “Thankfully, he will NEVER be able to learn from your example.”

Typing those words gives me an accelerated heart rate.

These words have popped in my head on a regular basis.  The words were thrown out in a complete rage, but they were unforgettable words nonetheless.  Words can be powerfully binding. 

Since that moment, I have pondered many things.  When people are angry they often speak the truth.  I believe this person truly believes that I am self-absorbed and that I have somehow caused Drake’s autism.  I assume this person also has no understanding of autism and believes that Drake will not have the mental awareness to understand what a horribly selfish person I am.  It all makes me laugh and breaks my heart at the same time. 

So, the last several months I have reflected on many things.  Am I self-absorbed? Why do I write and have a Facebook page that displays Drake’s life for the whole world to see?

I do it for me.
I’m doing something to make me feel better.

 Is that selfish?  Does that make me self-absorbed?  I certainly hope not.  I do it because it helps me to connect with a community of others like me. It helps me continue to understand my son and how he learns and understands the complicated world around him.  I do it to stay sane and to stop the mind-numbing fear that grips me from time to time. Writing helps me heal, but there is more to it than that.

I want people to see that this little boy is more than a diagnosis. People must understand that Drake is aware of much more than people realize.  He doesn’t talk but he understands.  He doesn’t always look at you when you speak to him, but he hears you. I want people to share in our joy when he makes progress.  Why?  Because Drake making progress gives other parents hope.  I was once a parent of a newly diagnosed child.  I wanted desperately to read about hope and good futures and bright lights at the end of long tunnels.  I want people to see how being a special needs parent is just plain hard, but it is also…humbling, inspiring, joyous, and extraordinary.

If any of that makes me a self-absorbed person then so be it.  If quitting my job to get Drake back and fourth to pre-school and therapy five days a week….driving over two hours each day, makes me selfish, well good.  If staying on the phone countless hours and researching information to help Drake be all that he can makes me a horrible person, then I guess I am. 

A dear friend of mine gave me a beautiful necklace for Christmas that reminded me of my mission.  My call. My journey.  OUR journey.  He is my heart and I am his voice. 

I am doing everything humanly possible to help Drake gain independence, be self-sufficient, and understand this complex world.  Sometimes writing helps me make sense of it all.  When I write I am exposing my feelings, something I have trouble doing verbally.   It leaves me feeling naked, raw, humble, and at peace.

Being Drake’s mama is part of my calling.  My calling throughout life has been difficult, but it has also been beautifully blessed.  If being an advocate for Drake, sharing our journey, and fighting with everything I have to make this world a more accepting place for him makes me a self-absorbed person…. then I am…and I’m proud of it.  My prayer is that one-day Drake will know that I did all I could to make sure his future was full of nothing but happiness. Somehow I don’t think my mama lovin’ little guy will ever think I am a horrible person.

As a fellow blogger reminded me:  "Don't dim your light just because it's shining in someone else's eyes." 

***I have forgiven the person who made the hurtful comments.  Life is too short to walk around with an unforgiving heart and this is someone who has gone through some pretty difficult times.  Yes, it will be a long time before I can forget the words.....but I'm not walking around harboring anger.  If nothing else it gave me time to examine myself and make sure I am doing what God would have me do.***

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  1. Did someone you know say that, or someone on the Internet? How cruel and unfounded.
    "Don't dim your light just because it's shining in someone else's eyes."

    1. Perfect quote..I may just add that in! <3

      Someone I know and love said it....I've forgiven her. But. Words hurt, that is for sure.

  2. Please keep blogging. You give encouragement to other mom's that are going thru a rough time. I love reading your blog and posts. Please keep it up. Thank uou

  3. Fabulous! Those are some of the same reasons #whyiwrite. Keep blogging!

  4. "Sticks and stones will break my bones, but words will break my heart."

    I am very sorry to hear that you were the whipping horse for another person's misdirected rage. You can intellectualize it, and I'm sure you've come to the same conclusion, but it bears repeating: when people are ugly, it says more about what they are going through...

    I love your blog. I think you are courageous and inspirational. You may have just the right message, at just the right time; it could be the light that keeps someone going when they have completely broken down. Keep on keeping on. <3

    1. You are exactly right..this person was going through a horrible situation. We humans have a tendency to hurt others when we are hurting ourselves. I think it a defense mechanism for some.

      Thank you for your kind words. Part of my goal in all this is to help others when the world gets dark.

  5. Wow - I am so sorry someone said this to you, and am glad you are continuing to write and help others.

  6. I am an autistic blogger. Is your content something Drake will want to read when he is older? I am not against writing, but I am against publishing content that has the possibility of derailing his self-esteem. Autistic people have the highest suicide rates of any disability group, which makes it even more crucial to write tactfully. Remember that employers can look at your blog, so, if you describe embarrassing moments in detail, it can reduce Drake's chances of finding a job. It is hard enough as it is because 90% of autistic people are unemployed. Keep these factors in mind.

  7. Would you mind explaining how I have "derailed" his self-esteem? Since we are being honest, I am disturbed by autistic adults who assume they know everything about all autistic children.

    1. I did not accuse you of such a thing as evidenced by "has the possibility of derailing his self-esteem" rather than "You derailed his self-esteem." I am just asking you to consider in the future whether what you post is something Drake will be proud of when he reads. Your blog is so far free of disconcerting content, but, just keep my comment in mind for future reference.

  8. Thank you for your input. I was a bit "put-off" because the majority of autisitic adults seem to constantly bash parents of autistic children. I have always tried to read and look at each post through his eyes. I realize and I pray that I day will come when he can read about his journey. More than anything I want him to see all that he accomplished and see that I worked extremely hard to help him.