The Many Faces of Autism

I have wanted to publish a book for a long time… not a book with words or even illustrations.  Just a book of photographs.  I would call it, “The Many Faces of Autism.”  In this book, I would chronicle what autism in our house looks like on a day to day basis – the good, the bad and the ugly.

Most likely, I will never get around to a book of any sort.  But as it is Autism Awareness month, I’ve felt the need to do something to honor Autism, honor Grayson, and honor our journey that we’ve been on together.  I have put together a mini sampling of photographs (click on photos for descriptions).  Maybe this is something that only a mother can appreciate.  I really don’t know.

What I do know, is that sorting through these pictures has resurfaced so many emotions – sheer joy and pride, and grieving all over again at the hard reminders.  I remember the early fits and craziness, countless doctor appointments, and the constant helplessness that never left my side.  I remember peeking through the preschool window to see him pulling his hair and rocking, all of his frantic fears…plastic bags and umbrellas in the wind, the fear that someone would eat his food, touch his bellybutton, etc…etc…etc…  I remember crying the day that he ate his last Krispy Creme doughnut, knowing that a super restrictive diet was to start the next day, as we tried to heal his bleeding ulcers and bacterial gut infection.  This “diet” would kept me up until 3 a.m. trying to figure out what in the world to feed him and learning 1,000,000 new terms for allergens.  I remember never being more than 5 minutes from his school and the way my heart would race every time my phone rang.  I remember the screaming, sometimes hours on end, and feeling like death would be a welcome relief.

However, in spite of all of the heartache, what I mainly see when I take a bird’s eye view of these photographs is…GROWTH!  In the midst of the day to day fits and agitations and 50 TRILLION QUESTIONS, I can easily forget just how far he has come from the little boy that he once was.  These pictures serve as a sharp probe to remind me to count my blessings.  Sadly, I have gotten lost in my own agitation and impatience.  I have started seeing failures instead of successes, and I have forgotten how to laugh with Grayson and find compassion for him in his struggles.  I have forgotten that he is funny and sweet and smart and creative!  And in all of this forgetting, I have forgotten that although I may be tired, I am not a mean and angry, old and haggard witch (how I feel at the end of so many days).  I have forgotten that it’s ok to laugh and smile.  I have forgotten so, so much.  I have a lot of remembering to do, and quite honestly, this overwhelms me.  What if I cannot remember how to get back from where I came?  Perhaps I have never even been “there” and need to forge a new path??  But then I think of Grayson and all that he has overcome and become, what we have become together.  And I know that I can, and that I will, get where I need to go.

 Maybe this is the beauty of photographs.  They capture moments that trigger memories.  And though not immediately apparent, when viewed from afar, we are able to see that which was missed standing close up.  So, without further ado, I am happy to share, “The Many Faces of Autism…”

(Grouped into the following categories…Obsessions, Firsts, Sad Times,  Progressive Photograph-ability, Sleeping Anywhere, Crazy Moments, Precious Moments and my Favorite Notes from Grayson)

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You Are Enough.

13323703_1046851035408719_7118944347292993062_oTo my new friend…and for anyone else who is struggling to feel that they are “enough…”

I can see you have a hard time recognizing the beautiful person you are and all of the wonderful things that you do.  I shared that until you are able to see for yourself how amazing you are, you would have to learn to trust those who best know you.  I realize that I just met you and don’t yet qualify for that role.  But I have been where you are and my heart hurts because I understand how you feel.

You approached me because of our shared struggle in raising special needs kids.  My impression of you right off was that you live with gratitude (you didn’t have to come up to me to say thank you), and you are courageous (for being vulnerable with someone you just met).  I quickly realized that you are exceptionally amazing because you willingly chose to bring two struggling children (that are not yours by birth) into your practically empty-nest home.  I don’t know if you recognize the magnitude of this choice.  It doesn’t matter if you have been scared or have second guessed yourself…you willingly exchanged your life for theirs and there is no greater love than this.

And forgive me, but I Facebook stalked you tonight.  I looked at your pictures and I didn’t see irritability or failure or anything else that you mentioned.  What I did see was a strong woman fighting to give two children a normal life; children that would have otherwise been lost to the proverbial system.  I saw two children living in a house surrounded with beautifully tended flowers and attending church in a loving community.  I saw birthday parties, extravagant school projects, Halloween costumes…all things that these children would never know without you.  I saw your beautiful smile in many pictures.  How many forgotten children never receive a genuine smile?  Do you realize what normalcy, consistency and safety you are giving to these kids?

Of course I know that there is more to meet the eye than what is portrayed on social media.  I know that you rage and cry and scream and want to drive off in your car and never look back.  But I also know WHY you feel this way.  It is NOT because of who YOU are.  It is because of the situation you are in and the ways you are being stretched and pushed beyond your capacity.  You are strong day in and day out.  You can’t even truly rest while you sleep because of the dreams and nightmares.  You are trying to love two children as your own, even though you missed out on the essential bonding years of infancy.  Not only that, but you work full time!!  In my book, this certainly qualifies you for some kind of major award! 

I can see that you truly want the best for these kids.  You really love them.  But I can also see that you’re tired, you’re depleted and you’re running on fumes.  You are human and you have a limited amount of time and energy.  So you have to, for everyone’s sake, eliminate all the needless junk in your life.  By this, I mean get rid of the self-imposed guilt.  Expel the hovering, vicious thoughts telling you that you’re failing.  And especially, eliminate (as you are able) all of the self-doubt that pushes you to believe that you’re not good enough, patient enough, loving enough, whatever enough.  You are you and that is enough.  At the end of every day you are empty.  This is because you have given everything so that they might want for nothing .  It will never feel like enough because they are bottomless pits at this point (regarding their neediness).  But with time, maybe their special needs will be less because of the backbreaking work you are putting forth now. 

Above all, try to look at yourself and everything around you with soft eyes.  Pursue beauty and that which feeds your soul.  Your face lit up when you talked about books…maybe you could make yourself a cozy reading niche?  Perhaps gardening or photography are undiscovered talents?  Regardless, figure out how to love, cherish, and respect yourself.  It is not selfish…it is survival.  Celebrate the small things, turn your morning coffee into a  sacred ritual.  Give yourself permission to sit and do nothing without judgment.  Fight for joy and pray for the eyes to see light and beauty. 

quotes_creator_20161219_090518And though I don’t know you well, know that I love you.  We are connected through our struggles and sufferings and I understand.  I understand that you sometimes feel trapped in your own life.  I recognize that you constantly feel as if you are on the verge of a mental breakdown and I am all too acutely aware of the guilt that has become your constant unwanted companion.  But I also see that you are strong enough.  You will have to work hard at resting, strive to surround yourself with love, and be a continual advocate for yourself and your family.  But I know that you can do it.  Hang in there and believe me when I say that you are amazing.  Good strength!