Monday, September 12, 2011

The missing letter

This is the one document I thought was missing from Jakson's paperwork the day he was diagnosed. A letter from a mom telling me "Everything is going to be all right". I've had quite a few emails the last couple of months from friends and strangers asking me to give advice to moms dealing with a new diagnosis. I feel terrible that I haven't had a chance to answer given the recent craziness of moving and starting school. This is my reply.

P.S. I'd love to answer any specific questions or act as a sounding board-please feel free to email me. I love meeting other Aspie/ASD/Autism moms. We gotta stick together.

Dear Mom,

Today your world has changed. Whether you came into this appointment suspecting an autism diagnosis or not, it hits you hard. Something about hearing those words pronounced by a professional makes it so much more final. Concrete. Real. Even if deep down you've known all along, it's tough to swallow.

In a way, an official diagnosis is a relief. How many times have you wondered why other mothers seem to have such an easy time with their kids? Social outings, park group, play dates, even running errands-all done without a worry. You usually don't see other moms chasing their kids out the door as they run away from story time screaming even though you've been coming to the same libary, with the same kids, with the same routine for almost a year. Oh, and that meltdown in Target last week about something that happened six months ago? It's not just your parenting. There really are some issues that other moms aren't dealing with.

There will be guilt. Get ready for it. You'll wonder-Did I do this to him? Did he inherit it from me? Could I have done something differently to help him? Should I have just changed his diet and he'd be fine? The answer to, no, no, and no. And don't let other autism parents tell you differently. One of the first things I learned after my son's (Jakson) diagnosis was that there are a lot of conflicting opinions among parents about causes, therapies, and "cures" and frankly, a lot of them are guilt inducing. I don't understand why (shouldn't we be supporting each other?), but you have to take the articles and advice with a grain of salt. If it sounds crazy, it probably is.

The worst part (at least for me) was when the future questions set in. Will he be able to make friends? Will he get teased? Get good grades? Go to college? Move out of our home? As soon as we walked out of the autism clinic, I had fast forwarded 20 years and Jak was still living in my house! The only way I've learned not to get overwhelmed by the future is to literally never think about it. Take one day at a time.

You'll have plenty to deal with one day at a time anyway. You are your child's BEST advocate and the schools will be proving you. Become educated about autism, about your rights, the laws, and know exactly what you want before you step into a single meeting about your child. No one knows your child or cares as much as you do. Make this your mantra: I am right. I know what is best. They will push, but be prepared to push back.

For me, the most effective way to heal grief was to read about adults with autism and what they have done with their lives. I can't tell you how much comfort John Elder Robison's Look Me In The Eye gave me. Or The Way I See It by Temple Grandin. In fact, after reading those books, I was excited about Jakson's autism!! Eventually you will be able to gather enough information that you will be able to figure out how you feel about autism, find therapists and other professionals that share your beliefs, determine your own, unique philosophy (how does our family approach autism, what are the long term goals for our child, etc) and come to grips with your "new normal".

Don't be mistaken that once your initial struggle is over it's all rainbows and unicorns, because that's not true. There are times when I still find myself starting over----coming to terms with our reality all over again. But, thankfully with the help of a great support team (my husband, family members, Jak's therapist), we can get through any setbacks and realize that the goal we all want for Jakson is attainable. Happiness.

My personal autism philosophy has not changed much in the past couple of years. I'm not looking to find the "cause" of Jakson's autism nor am I searching for a "cure". Autism is not cancer, it's not a cold, this is basically my child's whole being. His personality without autism would be completely different. Sometimes it would be easier to deal with, yes, but Jak wouldn't be Jak without the dinosaur obsessions, his organizational skills, or his need for a tight squeeze---all things that can be attributed to autism. This doesn't mean that we won't involve Jak in therapies. I don't believe that we should deny that he has some challenges that need to be addressed so that he can function in society, but my goal isn't for a "cure", instead it is for Jak to lead a happy life. Even if it isn't the life that I had originally envisioned for him.

Everything is going to be okay. Take a deep breath, let yourself cry, realize that other parents will never understand what you are dealing with, give yourself a break and give yourself a little credit, do a lot of research, know your rights. You are the mom and mom's always know best.

Much love,
A mom who has been there


Camille said...

You are so awesome, seriously. :)

Shenna said...

I wasn't trying to start another day this week in tears... What a great letter! You are a wonderful mommy and friend!

Sabrina said...

Beautifully written friend. And I feel like this can apply to all moms, not just those of autistic kids in the sense that we all need a little encouragement now and then. You are awesome!

KatieB said...

great stuff bethy. i'm so proud of you and know you are doing an amazing job.

Audra Bollard said...

Love, love, LOVE this. Proud to call you my friend!

Melissa Brown said...

This should be published somewhere... Seriously. And I applaud you everyday. I agree that this can apply to moms everywhere that have to deal with a child with a physical or mental disability. The only other moms that truly 'get' what I've been through with Carter are other moms that have a child with heart problems/health problems. I did the guilt thing when he was born. Ive had to push for what I knew was best for him and will continue to have to.
jak was sent to you for a reason just as Carter was sent to me for a reason. Love you!

Julia said...

I just found this through design mom. Its beautifully written. And so far "be different" is my favorite book. I'm still waiting to read "look me in the eyes"

I wrote a little bit about my son's diagnosis here:

Michelle said...

I know this post is almost 2 years old, but I just had to say that I stumbled upon it (after reading your Disneyland trip tips during my DL research - thanks for that, too!). This letter is SO WONDERFUL. I do not have a child who has autism, but my husband was diagnosed this year with Asperger's/High-functioning Autism. I'm still learning how to deal with it, and your words were such a comfort to me! It also helps to allay my fears of "What if our kids are autistic? How will we cope with that?"

So, in short, THANK YOU from the bottom of my heart! I've bookmarked this and will probably look back on it often.

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