A Letter To My Friends

My dear blog-reading friends,


It's been a long time since I've sat down to write.  That's because I've been so busy living life, and frankly, this winter has been a tough one for me.  Between work and health issues, we've been dealing with some new issues with both kiddos as well.  So time to myself has all but disappeared.  But life is slowing down again now, and I have so much I want to say and do and write!


But first things first...April is here again.  It's my favorite month of the year.  It's the month my baby girl was born (joy!).  It's the end of winter (blah) and the start of spring (yay!).  And it's Autism Awareness Month.


In our real, day-to-day life, we don't always feel a lot of support.  That's not to downplay those who do support us--we love and appreciate our parents and siblings, who are amazing with Munchkin and love him and embrace him for the wonderful child he is.  And we have friends who listen and try to understand what's going on with us, and continue to hang out with us, and love our kids.  We love our friends!  And we have a lot of friends that we've never even met, except on Facebook and in online support pages, who completely understand and support us.  We value them immensely.  


But the people we encounter everyday?  The ones who we see at church and at work and in the community?  Even our doctors and Munchkin's team of therapists and teachers at school?  We don't feel support from them much of the time.  And that's been one of my biggest struggles this winter.  That feeling of fighting for your child to be understood and accepted just as he is.  And this winter, we've had a doctor tell us that he doesn't think Munchkin's on the spectrum, that perhaps he was misdiagnosed.  (This, after just one hour with him...really?)  We've had teachers tell us Munchkin's just "playing us," that his "annoying" behaviors are things he could control if we were a little more disciplined with him.  We've had our OT at his school discontinue his services, because he's "just fine" and doesn't need any more help.  (Which has placed us back on the private therapy waiting lists, because, believe me, he still needs help.)  We've struggled to help him find his place in our church, because he doesn't want to be there anymore.  We've struggled to go to restaurants and stores, which we had figured out, but now cause sensory overloads again.  We've had to find different ways of discipline, of motivation, of calming him, because what worked once does not work now.  Parenting is exhausting work for anyone...but parenting a child with special needs is so much more.  More painful, more exhausting, more trying, more failing, more battles, more goals, more steps to reach those goals, more lessons that need to be learned and relearned and relearned... 


So that's why I love Autism Awareness Month.  Yes, I am committed to raising awareness about the early signs of autism, because I believe that the earlier it is diagnosed, the better the child's chances are of overcoming many of their obstacles.  And yes, I am committed to raising money and participating in research about autism, because there is so much mystery surrounding these children and how their brains work.  And yes, absolutely, I am committed to showing the world that our children are so much more than a diagnosis.  They are so much more than their behaviors, and their quirks, and their silences, and their stares.  They are amazing, brilliant, creative, beautiful children who experience the world so very differently than the rest of us.


But mostly, I love it for very selfish reasons.  April makes me feel less alone.  It lets me know that people all over the world are fighting to help their children fit in; to teach their friends and their communities to accept these awesome kids for who they are, not who society says they should be.  It makes me feel valued and appreciated for my hard work every day.  It gives me a purpose, something besides my kids to pour my energy into.  It allows me to make a difference, to share my story, to show the world my amazing child and to celebrate him.  And it brings some of our struggles, some of our pains, and some of our joys into the homes and lives of people who really don't know what life is like for us.   


But most of all, Autism Awareness Month makes me proud to be a part of the autism community.  None of us ever wanted to be members of this group of people, but we are.  And we are warriors!  We are strong, we are brave, we are mighty.  We band together and support one another.  We share a common voice and common goals.  We love our children just as they are.  We support them in a world that wants to change them.  We speak for them when their own words can't express how they feel or think.  We teach them and give them the tools to succeed in this world.  We know that our children are incredible, that everyone of them is valuable.  And we are proud, so very proud, to be the parents of a child with autism.


So check back throughout the month.  I have so much I want to say about Munchkin, about autism. I have this huge desire to show you all just how amazing my little guy is!  I hope you don't mind if I brag on him just a little bit now and then.  Love to all of you,


Ellie