Sunday, January 23, 2011

Dealing with Diagnosis

The week The Boy was diagnosed, it seemed as if everyone had something to say.  Some words of wisdom or piece of gossip column advice from people who had no idea what we were going through.  At the time, we didn't know anyone who had a child with autism - no one to truly tell us what we were in for.  

Some of the things we heard was:

"It could be worse."

"It's really not a big deal." 

"Whatever doesn't kill you, will make you stronger."

"God doesn't give you anything you can't handle."

"He (referring to The Husband) just needs to get over it." This was told to me by an in-law.  She's now dealing with her own son's diagnosis and from what I hear is having a difficult time.  "Getting over it," she is learning is easier said than done.  

And my personal favorite, "The Boy's not going to die from Autism and neither are you." This was told to me by my best friend of more than 15 years. We are no longer friends - but that's for another post.

Those first few months were difficult. I did a lot of crying. There was a lot of uncertainty. And I felt like my home was no longer my own.  With therapists coming in and out.  Our work schedules changed, our life style changed.  I used to go out after work with friends, gossip on the phone - after The Boy's diagnosis that all stopped. Our life revolved around The Boy and therapy. I couldn't justify going out - what if I missed something?  There were people in our lives who couldn't understand why we no longer had time.  And we learned who our friends really were.  

In retrospect, going into seclusion probably wasn't the best thing.  But we all deal in our own way.   

I would tell any parent dealing with a new diagnosis to just take it day by day. That there is no time frame for acceptance. Not to let others dismiss their feelings of loss.  And not to succumb to guilt - you'll drive yourself crazy.  Then I would tell them to be strong.  You can advocate for your child in the morning and cry in the afternoon (because it is okay to cry and feel sad).  That if you need to scream - bury your head in a pillow and scream (I did this a lot).  I would also tell them that it gets better. Maybe not easier, there is always something to fight for - you just get better at fighting. I would also let them know that there is joy to be found in every day simplicity.  Never allow your sorrow to overshadow those moments.           


  1. This comment has been removed by the author.

  2. Sad that some people don't think before they speak. Friend is a word that's very over used and I've learned over the years that there are very few true friends in life. In times of crisis you know who your real friends are. Your ex friend should be ashamed of herself for making such an insensitive comment as someone once said to me sometimes ppl aren't meant to stay in our lives forever and some ppl truly don't get it until they find themselves in the same situation which is pretty sad.


AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.