A day in the life....

Anyone out there that is a parent knows what I speak of when I talk about loving someone without reservation...loving someone unconditionally...loving someone so much it makes your heart ache with a joy unequaled by anything on this earth.  You also know the weight of responsibility resting squarely on your shoulders as you make those all important decisions about what you want your child to experience and what lens to use to view the world. The responsibility of the knowledge to give them the tools they will need to navigate their way through this confusing and wondrous journey we call life. 


As you can imagine, when you are given the diagnosis of autism for your child....there is... a sense of loss. Everything you envisioned life would have in store for this child has now completely changed....in an instant.  At the time this happened to me, I didn't want to believe it...I wanted to pretend it wasn't there...I told myself that it would all be okay - we just have to work hard to catch up and he will be right back on track...he's just delayed....no big deal.  Then you start thinking...what did I do to deserve this??  Why is this happening to me?? I am not equipped for this...what do I do wrong? WHY ME??  As time went on, I had to come to terms with my grief and think of it in a different way...yes this was happening...no, I didn't do anything wrong..and most importantly...this wasn't about me! Get over yourself, Kathryn!  This was about a child that needed me to advocate for him to be a part of the world. As hard as it was for me to wrap my mind around this tragedy...think how hard it was for my child.  The next step was to look ahead to the future and find ways to help my child be connected to the world around him. I have spoken with several mothers that have gone through this and we agree that it is a sense of loss...just like when you mourn someone you love that has died...you have to go through the stages of grief before you can move on.  I will not experience the communication and milestones another mother with "normally developing" children will experience...I do mourn the loss of that, but on the flip side - we have learned a new "language" and have morphed the term "normal" into something that works for us.


Have you ever wondered what "normal" is?  I have come to the conclusion that "normal" has a different meaning to everyone out there.  In my household, normal is ......

• running around on our toes and rejoicing in the sound "eeeeeeeeee"
• watching the same part of a movie or computer game over and over again...rewind-fast forward-rewind-fast forward...it could be the visual or the sound or the combination of both that we get hung up on...thus causing great excitement and hand flapping and jumping
• sign language is an emerging skill
• textures of foods and picky eaters leave something to be desired as we usually have 3 different meals on the table at one time
• getting angry at the drop of a hat because we didn't understand the concept as a joke
• learning a skill and then having to learn it all over because it is like we have never seen it before(even though we have done it a million times)
• getting stuck on a topic and only talking about said topic 50 gazilliion times no matter what is being talked about....everything relates back to said topic
• taking medicine 2 times a day
• therapy and counseling 3 times a week
• go potty...go potty...go potty...go potty...is our mantra!
• eat food...eat food...eat food...eat food...is our other mantra...
• sit chair...sit chair....sit chair...sit chair....is mantra #3
• routine is EVERYTHING!
• homework is a VERY long process...the sky is blue...the SKY is blue...the sky is BLUE...what color is the sky??......."greeeeen??" (look of confusion followed by anger followed by tears)
•  someone screaming the phrase "your fired!"

The list could on and on but I will spare you.  My point is that we all have our own "normal".  I love my sons...my "normal" is a ten year old with Asperger's and a non verbal autistic 5 year old. They are the loves of my life and I will ALWAYS fight for them and help them find ways to connect with the world.  


So friends...I bid you farewell with this thought.  Take a minute to see the beauty in your life...it may not look like someone else's beauty...but know in your heart that it is YOURS...appreciate it, give yourself permission to experience it, and most of  all...be thankful.


~Kathryn