Sunday, September 27, 2015

Give me the tools

When I was in Junior High my Dad built a large wood soccer kick board in our back yard.  I grew up in rural New Jersey and we had a good amount of yard space to practice any sport we were playing.  This wood back board became a tool to help me develop the skills I needed in the various sports I played.  I vividly remember throwing and catching lacrosse balls using the back board.  I remember playing one-on-one matches with my dad using the back-board as my goal.  It was a resource which I used to help me improve.  It also was a way to bond my Dad and I.  We spent hours outside together.  We would talk about sports, school, my dad would give me advice, and I would tell him goals I had for the future.  The simple tool of a back board was a special connection with my dad. 
My back yard in New Jersey.

When Max was born I was so nervous to be a mom.  I loved him with all my heart and soul, but I didn't know what I was doing.  Parenting was something new, and it was something I didn't go to school for.  I read books on parenting, on sleeping, on nursing and having a happy well adjusted baby.  But when Max started not hitting basic milestones, was socially behind his peers, and I was unable to connect with him I didn't feel like a good parent.  I failed.  I was failing my child.  I wasn't doing something right.  Max would spend hours screaming all day, would physically hurt himself, and was unable to communicate.  As much as I wanted to understand, I didn't.  I was frustrated, depressed, and worried that I was not a good mom. 

Then a miracle happened.  We talked to our pediatrician and explain the things we have been observing with Max.  He comforted us and told us there is help.  He also told us that we were not bad parents, but instead we are parents of a special child who is going to need our help to navigate through life.  At age 2.5 Max was diagnosed with Autism.  This was a year and a half ago. And since then I have been gathering tools that allow me to enter his world.  The diagnosis WAS NOT the end of the world, it was the beginning of a brand new one.  It was a world that I am so lucky to be a part of.  Autism has helped me reach both my children.  It has helped me be a better mother, wife and teacher.  

Max has been the best guide in the world.  He is a fantastic example of unconditional love, kindness, stubbornness, and devotion to his love for life.  He struggles, we all do.  But at least now he has parents who have tools to help him be successful!  Having two children with Autism gives us even more tools because what we have learned works with Max might not work with Dexter.  We have to be constantly learning. 

Autism isn't a label for my family, it is a tool, a guide, and a world that connects me to my boys. 

Monday, September 14, 2015

It take a Village

There are some days I sit and cry.  I cry with frustration, with tiredness, with negative thoughts that I can't be the mom my boys need.  And every single time I have had a moment, or even a full day like this I have had a friend or family member reach out to me and offer to help, or just talk, or even just take a drive around the block.  (Sodalicious has become a major stress relief in my life.) I can't tell you how grateful I am for these moments, and for the village Will and I have formed to help raise our two special boys. 

People often ask "What can we do to help?"  or "Do you and Will need anything?" 
We don't know how to answer this.  Our personalities are not one who ask for help.  We like to serve.  We like to help and be helpful to others.  So asking for help is hard.  But we are learning. 

There are not many people who can watch Max and Dexter.  They are hard boys and I totally understand make people nervous.  Dexter is so anxious to be without Will or myself and will cry for hours.  Max can bolt at a moments notice, and honestly that scares me.  Then Max and Dexter both have sensory issues with food.  So we tend to do everything as a family.  We go everywhere together and travel as a pack.  It is just easier. 

There have been so many people who have helped us.  So many people who have come to our rescue and have made our lives easier.  The emails of support, the texts on hard days, and the middle of the phone calls mean the world to us.  Will and I feel so lucky to have such a huge village.  It is the stranger in the food store who helps me when both of the boys are melting down in the busy parking lot.  Then there are the group of BYU boys who live across the street from us who have on multiple occassions cleaned up our outside toys and have saved Max when he has run into the street.  These acts of kindness make me have so much faith in humanity. 

This past weekend we took part in The Utah Walk for Autism Speaks.  We created a team for Spaceship Max.  We didn't have any expectations for the walk and we really just wanted to go and be a part of the Autism Speaks event.  I was blown away by the support we had.  We had many who supported us by donating to our team and then we had a great group of friends who came and walked with us.  The event was loud, which for an Autism event was strange, but all and all it was a great morning!  Our family is blessed with so much support.

I love my family!  
Super hero dad