A Letter To Myself

April is Autism Awareness Month.  As I was perusing through autism support groups recently, looking for advice on potty training Miles, I came upon a woman's letter to herself on the day her child was diagnosed. It was very empowering and she challenged all autism parents to do the same thing. I found this exercise very cathartic. We have been in the middle of a mildly bumpy patch with Miles and autism behaviors lately, and this activity helped me to put into focus how far we have come and how many things are going so very well. This post is in no way seeking out sympathy for our situation. I don't know about other autism parents, but sympathy is the last thing I want. We love our autism angel just the way he is. While his upbringing and challenges may be a little harder than with neurotypical kids, the good outweighs the bad every time.  This is just a glimpse into the last year of our life. While I feel very vulnerable in posting some of my deepest feelings on the subject matter, I feel that helping with autism awareness and helping to establish understanding and acceptance of kids like Miles means that mothers like myself need to put ourselves out there to show people what it is like. To see the Miles that I wish everyone else could see.  I look forward to seeing how this letter to myself may change in another few years.

A Letter To Myself On The Day of Miles' Diagnosis

Dear Karena,

I know you feel like you have been preparing yourself for this day for months. You know what the neuropsychologist is going to tell you, but in the back of your mind is still HOPE. That hope will sting the most today. While you know that you are about to hear, “Your son is on the autism spectrum,” your heart hopes to hear, “He is going to be fine, he's just a late bloomer.” Those words won't come, and you already know who Miles is, and what challenges he will likely face. That is why you have been on this path long before anyone else suggested it to you. Still, your tears in front of a perfect stranger will surprise you because you didn't realize how strong that hope for something different was. Don't forget to squeeze Jason's hand a little tighter, and hold him closer because he is experiencing all of this with you, but will try so hard not to show it because he feels he needs to be strong for you.

You are going to feel overwhelmed with the packet of information you are handed with talk about ABA therapy, special needs programs, medicaid waivers, and support groups. It is even more terrifying when you realize these therapies will cost more than you make in a year, and your insurance won't cover it. However, you have very experienced and capable people in your life that will help you to navigate these waters. You will war with yourself about whether to share this diagnosis news or keep it a secret, wondering if the world doesn't know about it then you can teach him to blend in before school and no one will notice his differences. Kids can be so mean when they see labels. In the end you want the world to see that your son with autism is beautiful and brilliant, and want the world to see him as you do. His disability is nothing to hide and nothing to be ashamed of. He is still the little boy that can brighten the entire room with his smile, and who laughs and sings most of the day, and loves to snuggle with Mommy to watch Mickey Mouse. When you get the courage to take that step and let the world in, the support you receive from family, friends, and even near strangers will literally take your breath away, and be a much needed lifeboat in a very rough and terrifying storm. You will find a posse of warriors that have your back with understanding that no one else has, as no one is as strong and supportive as other special needs parents. Your friends will become family and have your back every step of the way whether it is for a reality check or encouragement or a shoulder to cry on. Your family will tackle this adventure head on and will be his biggest cheerleaders.

You will let your hope soar again with every success Miles has, and your heart will break with every small regression because you want so badly for him to beat the odds. But in the quiet moments, free from the meltdowns and obsessive repetitive activities, you will realize how much you have learned and gained from Miles' challenges:

• You will learn not to take life for granted.
• No victory is a small victory.
• A smile and genuine hug from your baby is more valuable than a thousand beautiful words (those words will come though and be even more beautiful because of your wait).
• Conversations can occur through songs.
• God has placed many amazing people in your life for just this purpose that will help you find peace and make sense of all the scary things.
• Even though you hate conflict and ruffling feathers, you can do it for the sake of your son and never think twice about it (Go Mama Bear)!
• Your older boys have the most beautiful hearts and will protect Miles always.
• Miles will be OK, even if it isn't the kind of OK you wanted.
• Miles will show you how to increase your love and compassion for those around you.

This isn't the path you wanted your child to be on, but his isn't the nightmare you feared. There will be rough days where you cry and wonder how you will make it, but the good days are so beautiful, and you would never realize how much so without having experienced the bad days.

Miles has always had autism and you have been an autism mom long before today, but you never realized it until now. Nothing changes today, you now simply have the tools you need to get Miles more successfully to the next step.

Have patience and show love in all things. Don't lose hope that things are going to be OK, no matter how much hope hurts some days, just be prepared to alter your definition of OK.

Hold tight to faith that God has a plan for you and most importantly for Miles. You will start to see pieces of that plan over the course of the next year and the rest will unfold in time. Hold tight to your family. Jason is your partner and best friend, and the best way to help Miles and to help yourselves is to rely on each other. Communication is important so that neither one of you feels overwhelmed or alone.  Make time for your older boys as they need to know they are still important and valued as their own beautiful individual selves. This will be a confusing time for them as well, but your boys will become strong advocates for their baby brother and will find their own strength as well. Now take a deep breath and look at your baby. He is the same little man he was 5 minutes ago, but you are now a mom with a mission, and you will succeed for him. So stay strong. You've got this Mama!