Wednesday, May 20, 2015

I Remember When.....

I was reminded today about those early days in our autism diagnosis.  Man those were possibly the biggest suck fest filled days ever.  Because what you get from the "medical community" is a paper with your autism diagnosis and a prescription for some Occupational Therapy - maybe, and told they'll see you in a year.  That's it, then you're on your own.  You're on your own, with the only resource you have is yourself, and trying to find the Yellow Brick Road to get back to Kansas. 

Every single parent handles that diagnosis differently, husbands, wives, step-parents, grandparents, godparents, guardians.  We all have our own coping mechanisms and they are all different.  There is not a right way or a wrong way, because there is no instruction manual when you have a diagnosis from autism.  Sure you have professionals that lay out a black and white plan for you - but those so called professionals must have not learned that autism is not black and white, there are many many different shades of grey, and not one of the kiddos fit inside a specific box that they built to try to fix the "problem".  I foolishly and wide eyed believed them with 2 years of therapy and early intervention my son would be mainstreamed by Kindergarten - that was the plan for all kids with autism................  that's another heartbreak for another post.

But I remember the heartbreak and the loneliness that was crippling.  I remember feeling like I was losing my son more and more everyday.  I remember grieving and sobbing over the dreams that I had for my kids, I remember feeling like my motherhood was robbed from me, I remember when I saw one of my friends stare at my kid for the first time in shock, I remember not feeling happy for my friends when they shared their babies milestones because I was jealous and sad, I remember not taking phone calls from people because I didn't want to talk and I didn't want to listen, I remember a couple of years of being a prisoner in my house to autism therapy.  I remember being jealous and angry at my husband because he got to go to work and get away from it for 10 hours - he sometimes a lot of times stayed 18 hours.  But what I remember most looking back on it was my fear, I remember the fear, it paralyzed me, literally I couldn't move, I couldn't talk, and I could barely breath.  If you're an autism parent, I know you felt that too.  That's the stuff we're never supposed to utter out loud.

When pre-school started and I actually got to go out of the house and see people other than the 22 year old therapist that came to my house everyday to help my kid make eye contact and stack blocks (they did much more than that).  I arrived at school, and there were moms there.  Mom's like me that had that look on their face, "WTF just happened to my life".  But it was that time in pre-school, when I saw other moms other families, dads, grandparents bringing their kiddos to school, hoping and praying and expecting the best for their kids.  My old friends, didn't understand my sorrows, my worries, my hurt, my grieving, and my immeasurable love for my kid.  But the mommies and daddies I met at drop off and pick up were top notch, they pulled me out of the hole that I was in and brought me back to life.  They put light in my eyes, and hope in my heart.  They gave me a voice and ears - to speak and listen about ANYTHING.

Never thought times like this would happen, friends make it possible
The journey that autism takes you on is a blind one. There is not absolute map, there are not guarantees, but just like in anything in life, find the people who are doing their best to move forward.  There will be all kinds of people you meet on your journey, and that's the point.  There is no reason to do this alone - the number is 1 in 68 kids has autism. There are a lot of us, don't be sad and alone, there is hope, there is help - so many different kinds of help, there are options, many of them. Do not ever give up hope.

I am the mom of a severely autistic child and a mild to moderately impacted child.  Their needs are both significant, but very very different.  There are so many options and paths to take and the professionals while they mean well, they are just not nearly as compassionate, empathetic and none have the foresight to combine treatments and therapies or "think outside the box".  Autism in many many ways has made  me feel like the most inadequate mom because I never know if what I'm doing is good, right, or working or hurting my kids, and it constantly makes me second guess myself.  My other warrior moms pull me out of my paralysis and help me move forward. They understand, when I can't find a babysitter, they understand and cook a meal for me when my son hasn't slept in 6 days, they talk to me on Christmas because one of my kids hadn't pooped in 5 days and he was miserable.   I can't tell you how much other autism families have added to our life.  I don't know where we'd be if we didn't have families helping other families.  Amazing organizations are out there to help, all you have to do is look past your tears and fears.


If you're a new mommy or even had your diagnosis for awhile and are sad and scared or just exhausted and overwhelmed.  We get it, we live it, and you do not have to ever be alone again.  I don't want to be that mom that jumped into the bottle of wine and swam around for a couple of years because I didn't know what to do.  I still don't always know what to do, but there are so many families that have trudged the autism road in front of me, I follow - and I follow and sometimes I fall but if I get on the path and stay on the path, I'm always going forward and I'm never alone. 

To all my autism and special needs parents that I've met, facebooked, instagramed, emailed and see all the time.  Thank you, for being part of our lives you make our lives better everyday. 

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