Dear Autism Mamma

Dear Autism Mamma,

My story is still on-going.  Almost 7 and a half years ago I started to notice that my daughter had learned to speak a little and then lost what she had learned.  She was responding to me well, and then started to get spacey.   Other babies were noticing the things that were happening around them,  but she was unresponsive.

When I told others about my concerns, I felt blown off or blamed.  I was expecting too much; I was too critical; I was too high strung and thus having a negative impact on her development.  I was spoiling her too much; I needed to have her around other children more often; I was too negative. 

You get the picture.  The explanations all had something to do with me.  There was something I was doing wrong.  I was confused and lonely and questioning my sanity.   It seemed all I could do was wait for someone else to be as concerned as I was.

When the diagnosis of autism came it brought a grab-bag of emotions.  I cried.  Don’t we all? But I also felt relieved to know that I didn’t have to question myself anymore.  We could move forward learning and researching and making our way as a family.   I also learned a valuable lesson.  Nobody knew my daughter like I did. Anyone can criticize or theorize or tell you that you’re wrong.  That doesn't mean they know anything.   I carry that wisdom with me to this day. 

It’s hard to tell you what the experience of autism will bring to your life or take away from it, because we all experience autism in our lives differently. There will be many choices for you to make.  After being on this path for a few years this is the advice I have. 

In spite of all the autism experts out there, many of them really don’t know very much.   Don’t take anyone’s word as the sacrosanct truth, no matter how much confidence and authority a person exudes.   You will get good and bad advice.  You have to learn to filter through it all.  You’re going to make mistakes.  That’s okay.  You can always start again tomorrow.  Your son/ daughter is more resilient than you think and they will make it through a few mistakes. Give up on things that are not helping you; pursue things that are helping; until they don’t help you anymore.  Then move on.  If your gut says “NO!” honor that.

Live for today.  When you get a chance to experience the joys and pleasures of life, go for it!  Don’t let what you ‘should’ or ‘shouldn’t’ be doing hold you back.

There are days when you will want to fight and fight you must.  There are days when you won’t want to fight and that may be a day to sit back a little.  You can always start again tomorrow.

Get as much sleep as you can by any means possible.  It’s just easier to stay healthy and positive that way and you need to be both.

Attend at least 1 support group.  Find other special needs moms on-line and/or in your community.  They are your best resource for emotional support.

Try not to take things too personally.  People will judge you by the therapies you use, the diet you eat the discipline strategies you use, the books you read, the advice you take and the tone of your voice;  ‘By what you have done and what you have left undone.’  Over time, you learn to care less and less about what people think.  The less you stress about it the better for everyone.  You only have to be accountable to yourself and your immediate family.

I don’t know if you will be looking for bio-medical treatments or advocating for acceptance.  You may be doing a little of both.  Do what feels right.  Looking for bio-medical treatments does not mean that you don’t love your child as he/she is.  Advocating for acceptance does not mean you don’t want your child to be healthy and independent.  Anyone who tells you otherwise is a fool.

Try to keep an open mind.  None of us have all the answers and the more open you are the better your chances of finding a way that really helps you and your family.

There may be a few friendships that die in this process; they probably needed to end anyway.  You’ll find new friends on this journey.

Do whatever it is that makes you and your family feel good. (With the obvious exception of excessive use of drugs and alcohol.)  Sometimes you don’t know what that is, but when you find a key to happiness use it to unlock that door and don’t let guilt or the opinions of others stop you.

Consider getting permanent eyeliner tattoos.  I’m serious.   On days when you feel inadequate and tired it helps to look in the mirror and see that you have make-up on and it’s not smudged…. Even though you can’t remember the last time you put on make-up.  It’s the little things that help get you through the tough days.

Finally, it’s likely that you will read lots of books on autism.  I’d like to recommend one in particular.  The Reason I Jump by Naoki Higashida. On top of having excellent information and insight, it will help  you understand what you son/daughter is experiencing as a person with autism.  I have found this helps me find the patience and understanding necessary to be an autism mom.

It’s a bumpy journey, but a heck of a ride.  Be kind to yourself along the way.  Best Wishes!

Shanti