Autism: It takes an entire family

July 12, 2012


by Guest Blogger:  Nancy Cook

A Grandmother’s Journey

Everyone talks about being a mother and how devastating it is when your child diagnosed with autism.  I bring a different perspective, that of a grandmother. 

My grandson was diagnosed with Autism Spectrum Disorder at 3.  That day I not only lost my grandson, but I lost my daughter too.  All those things that regular grandmothers do with their grand kids weren’t going to be available for me.  All the fun times my daughter and I would have shopping and taking the kids to the park, going out for ice cream, gone.

As a mother you cry, mourn, and look for reasons; then you pick yourself up, dust yourself off and begin to learn all you can so you can heal your child.  As a grandmother, all you can do is cry, mourn for your daughter and…wait.  As much as you love your adult children, it’s not your place to “take over” even though you’re dying to help.  You have to wait, and while you wait, you read, study, go to all the conferences and learn about special diets, therapies, etc.

I remember my son-in-law telling me that I had no idea the sense of loss they were both feeling because it was not my child.  What he didn’t understand was that, as a grandmother, my grief was double.  I had lost my dream of a “perfect” grandbaby as well as the typical mother-daughter-grandbaby relationship I had always dreamed of.  You know, the one where you can share the things the grandchildren do and reminisce about raising your own children so long ago. 

Gone were the days of shopping, gardening and lunch dates when the kids were in school and you had free time.   Instead it was IEP’s, checking out appropriate classes and therapies, finding a great doctor, good speech therapist, ABA provider and all those other issues that families with ASD face every day.   Dietary restrictions, sensory integration issues, the inevitable tantrums and all the other challenges brought by autism made the simplest trip or occasion a major ordeal.  

 Autism treatment is very expensive and pooling our resources seemed the wisest thing to do.  The diagnosis was in October and the next February we grew from a family of two, a retired grandma and grandpa, to a family of 6, all in a 3 bedroom house with a typical 18 mo. old and an almost 4 yr. old with autism.  We became a three generation household all dealing with sleepless nights, tantrums, special cooking, GFCFSF, special supplements, rotation diet, driving to therapies, etc.  Needless to say we learned a lot about ourselves, each other and of course, autism. 

Here we are 6 years later.  My grandson has done very well, his ATEC (Autism Treatment Evaluation Checklist - 1) at diagnosis was 140, it is now 40.  When diagnosed he had no speech, very little language, sat quietly and played and had no interest in the world around him.  Today he is very personable, loves to talk and be part of the family, loves to draw cartoons, reads like a college professor and has improved dramatically overall.  We still do the special diet, still do biomedical, still do behavior therapies and he still has autism.  However, along the way, the sense of loss that we all felt has been tempered by learning who he really is and finding joy in that child, not the one we imagined he was. 

It is said that it takes a village to raise a child.  I think the real statement should be “It takes an entire family to understand, heal and recover a child with autism”.  Autism is not easy but it has taught us all that there are so many more important things than being able to “go for an ice cream cone” or “play on the swings at the park”.  We have learned to appreciate every milestone no matter how small.   We have come to cherish every smile and every hug, no matter how fleeting.  We have met some remarkable folks on our journey, people who have made our lives so much richer and deeper.   We’ve also been able to help many families on their journey to recovery because we understand what they are going through.

As a family we are closer, more patient and more understanding than we ever were before the word “autism” entered our lives.   We also have a greater sense of family and connection since the diagnosis.  As individuals our weaknesses have been challenged, our strengths have been stretched, our beliefs have been strengthened and our resolve has become unwavering. 

It is also said that what doesn’t kill you makes you stronger.  I will add to that what doesn’t kill you makes you better, if you let it.  Can I say I am glad that my grandson has autism?  Absolutely not!  But is it the devastating diagnosis we once thought?  Absolutely not!   Our lives have taken a different course than we expected, but it’s those unexpected turns along the way that have made this journey of life so much richer then we ever dreamed it could be.

Editors note: Nancy is an awesome grandma and mother. She also works hard to educate families via TACA's Santa Rosa chapter coordinator efforts. We appreciate grandparents like Nancy beyond words.