We live and breathe Autism.

Since 2010, we have lived and breathed autism.  Looking back, the shock of hearing the diagnosis for 2 of our children didn't even touch the reality we were about to be thrust into, like it or not, we had to learn as we went...trial and error...sink or swim.  We grieved the future loss of meaningful conversation and everyday interactions became more robotic and confusing for us and them.  I quickly learned that I needed to focus when behavior interventionists were teaching my children how to express themselves and how to regulate their emotions.  If my then 2 & 3 year olds were learning methods, I needed to be on board!  

Fast forward to 2011, when our newest arrival came home from the hospital...I was thrown into a tailspin that has lasted over a year.  I won't bore you with daily schedule chaos or massive paperwork overload...but let me share my heart.  I was quite honestly sinking into a pit of NO control, energy, hope, understanding, focus and my ability to gain some sanity was literally GONE!  I watched my babies growing into toddlers who screamed all day to get what they wanted, and if denied access they would climb walls, chairs, shelves, tables, gates, open child proof doors, push out window screens etc.  They pealed paint off the walls, smeared poop around their room, banged on doors and glass, removed diapers and clothing constantly, emptied toy boxes, drawers and cleared shelves onto the floor multiple times a day.  My life was and is a living nightmare.  And let me tell you the difference between A-typical children and those who suffer from Autism.  Autistic children do not respond to their name, the word STOP, or explanations of danger almost to the point they appear deaf or they get excited about the concept of being chased or reprimanded and they will pursue their activity with more vigor.  

I continued on as before with constant therapy and gave up my privacy, pride, personal desires and peace for a life of work that had no certain outcome.  Many well meaning friends and family encouraged me to pursue something for myself, a hobby or activity I enjoy.  Well, I love to write and had finished a children's chapter book a few years back and tried to get published without success.  I thought, " it makes sense to make some edits and submit it again". Reality kicked in after attempting a few times to sit quietly to write or log into a computer.  My dreams or pursuits were a distant memory and the more I tried to achieve them the more frustrated I became that I was failing at it.  Hence, my pit was getting deeper.  I was facing an empty future of nothing but autism.

I remember a stranger coming up to me when I was in the "fog" of my new reality and she said there was a method of therapy in her country that works better than anything else she has seen and that is "just give them love".  Even though I was overwhelmed with "advice" and constant pressure of things I should be doing, or not doing, or trying or needing to add to my list, this comment stuck with me.  I knew she wasn't talking about the automatic love we have for our children.  The love she spoke of goes worlds beyond that.  A love that expresses itself in small opportunities that others miss.  It's physically touching, squeezing, hugging, whispering etc...instead of scolding the child so they will calm down.  It's going against our natural instinct and putting our own needs aside so the child has the "best chance" to succeed in their fragile environment.  Loving them this way causes us to feel, to the best of our ability, from their perspective as a lost mind trapped in a growing body.  It sounds crazy and I am sure people who watch me with my children have their opinions.  But when you are faced with a potential threat minute to minute, you have no choice but to learn and implement what works, and lets be honest, desperate times cause people to try anything!  It's certainly not full proof and everyday without fail, we are on edge and looking for "what's next"...always on guard...all hands on deck!

My heart aches. I want my babies to have friends and to play house or dress up or learn to ride a bike and take swim lessons...writing this even makes me cry.  I ask God a lot of questions.  I have struggled with His reasons for allowing this to happen to our precious little ones.  My husband and I go on dates and look for other outlets so we aren't constantly buried in "autism" related activities and conversations.  We pray with heavy hearts, although he tends to be more hopeful than I, we do ask for healing, a miracle, even small miracles like talking or expressing concern and love for others, which we have seen answers to in recent months.  Ultimately, we know that God is aware and not surprised and we see him working in our hearts to softens us when we get hard, to mold us to be like His Son, to keep us tender towards sometimes unlovely situations.  In closing let me share that Autism has changed our life for good.  We will not ever be autism free.  We have accepted that and love our children with more openness than I ever though I could have.  But we grieve the dreams we had pictured of our future.  We wish that this hadn't happened for many reasons but I think the one that stands out the most is we want our children to thrive and love life and without them being able to tell us their feelings or thoughts we can only grasp onto innuendos and wonder if "one day" they will be able to tell us "Mommy and Daddy, your love for us was so evident that everyday we have felt secure and happy because of you, and that has made a life of autism life worth facing".



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