Autism: Now what

In the weeks following, P’s autism diagnosis, I would wake in the wee morning hours choked with panic.  I would sit at the computer doing endless google searches.  My fingers automatically typed out:  “autism now what.”  My screened flooded with support services from national organizations all the way to local services right in my hometown.  I was able to find solace in other families who had walked the journey before P and so beautifully shared their stories and experiences.  Even though,  I read until my eyes were bleary with tears grateful for reading what others were doing.  It still felt like I was reading a “Welcome to Autism” guide.  If only my family follow steps A, B, C, D & E life would be grand, and P would be all right.  I didn’t want P just to be all right.  I wanted him to feel accepted and experience success.  Here I was paralyzed with the thought, “now what?”

I realized that I operate more confidently when I have information.  Facts and tips began to ease my fear.  As I put into perspective our experiences, I felt empowered with the task to advocate on behalf of P and other kids like him.  I want to share my top three lessons I learned since autism joined our story.

Lesson #1:  Please, please, please do not let the diagnosis intimidate you.  There is no room nor time to be fearful or intimidated.  You will have options for your child and your family.  With those options given to you, you will have to make choices.  Let those choice move your child forward.  Autism will always and forever be a part of your family, but it doesn’t have to define your family.

Lesson #2:  Please find what makes your child tick.  Not what you want your child to like, but what makes their soul happy.  Youtube videos with Swedish voiceovers, pizza tables from your weekly pizza deliveries, bouncy balls, cotton, rocks, or pencils.  Whatever it is–embrace it!  Your child may find it to be a comfort, reinforcer or teaching tool.  P’s currency, right now, is Legos.  He will work, practice, complete tasks for Lego time!  Currently, we have 756,043 Lego blocks in our house.  If one small block is out of place or missing, P knows!  That can lead to a meltdown.

Which leads to Lesson 2a:  Please be able to cue into triggers that may cause a meltdown or sensory overload for your kiddo.  Broken routines, itchy clothing, smells, touch, lights, tiredness, hungry, and sleep patterns can all cause issues.  Be prepared to redirect your child or to leave the environment.  Being alert can be essential for the safety of your child, yourself, and others around.

Lesson #3:  Love your child with your whole heart even when it is hard.  That sounds easy, right?  That is until your child lashes at you verbally or physically.  Or your child shows no emotion towards you on a daily basis.  We all want to hug our kids, but if that simple touch can send our child into sensory overload, it can be devastating.  For both your child and yourself.  You think all I did was hug my kiddo?  Why was I kicked?  Or why did my kiddo back away from me?  I’m not going to lie I have been there, and it hurts.   Your child is looking for a safe place in you.

Someone once told me to think about it like this–when we come home from work we have our routine.  One step of that probably centers around changing clothes.  Let’s get out of our tight pants, itchy sweater, or uncomfortable shoes.  We pull on yoga pants, hoodie, and a breathe a sigh and relax for an evening at home.  If only, it were that easy for our kiddos who struggle with transitions.  Our kiddos need info, need time to process, and security that home will always be their safe place to land.  Once you find a routine that works in your house,  embrace the routine, and embrace the love.

All my best to you,

Heather

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