Tuesday, February 22, 2011


It seems to me that autism can be like the wind. Some days, barely noticeable, just a steady manageable breeze.  Other days, it is howling, so fierce you fear your home, and all that inhabit it, will be picked up and carried away.

Well it has been windy around here lately. Mostly because I have been dealing with Mia's transition from Early Intervention to a preschool program.  Boy how I love Early Intervention.  Those therapists come right to your home providing guidance and education to you the parent, while giving your child therapy in the comfort of their home.  I remember back when Early Intervention ended for Ethan.  I felt a bit lost then too.  But, we "found" The Vista School and we were not alone for long.

Mia has had pretty intense ABA/VB programming since this past June.  I am really proud of the team of individuals we have had working with her.  I have had quite a few parents and professionals remark on our accomplishments.  I am very thankful for Mary Barbera, our BCBA.  She has pushed me when I needed pushed and guided me when I was struggling.  I have learned so much from her and continue to, and I thought I already knew alot! 

I am currently working hard to continue to make the best decisions for Mia.  It is pretty much a full-time job.  I am really worried about her and how she will do without me right beside her, as I have been up to now.  How can I protect her? What if it is all too much for her? I am so used to being right there to comfort and support her. She is transitioning, but so am I really. This period of change is hard, but necessary.

There is more to come, so I better "batten down those hatches".  For sure that wind will pick back up again.  Hopefully, setting us back down somewhere safe and equally comforting.  Those winds of change can be a good thing.  I feel the need to repeat that to myself.  Those winds of change can be a good thing.

Tuesday, February 8, 2011

What is Hope

As parents of children with life threatening illnesses, or neurological impairments, we often cling to "hope."  The hope that oneday things will be better, as we struggle to manage day to day life with our children. So recently, I began to wonder what exactly is hope, and how does it, or the lack of it, impact our family lives. Of course I started with Wikipedia. Wikipedia, that super cool virtual dictionary at your fingertips. Here is some of what I found:

Hope is defined as, "The belief in a positive outcome related to events and circumstances in ones life." Emily Dickinson wrote in a poem that "Hope is the thing with feathers that perches in the soul." Hope can be passive in the sense of a wish, or active as a plan or idea, often against popular belief, with persistent, personal action to execute the plan or prove the idea. Hope is important to both well-being and educational performance; people low in hope are more likely to be anxious and depressed.

Personally, I believe it is hope that propells us into action. The action of obtaining effective treatment for our children, of researching options, and meeting our own personal needs. Remaining hopeful is one of the best ways to ensure your individual happiness, as well as the well-being of your children. Unfortunately, hope does not always produce a perfectly positive outcome. I know far too many families that have lost their child to cancer,and many families struggling daily to find help and services for their children with neurological impairments such as autism. Although, these families fight hard and never give up hope. They are some of the strongest people I know.

Recently, a fellow autism momma friend of mine, told me her 12 year old formerly nonverbal son with autism, has recently begun to speak some words. She quickly followed it up to say, "I guess we should never give up hope."   I also know a local family who has a son who battled the same brain cancer as Ethan. They are now preparing to go to THON with a healthy and continually progressing 2 year old.

You certainly do not need to have major life challenges to appreciate the positive effects of hope. We all need hope in our daily lives. Whether it be the hope that you will finally get your dream job, or that your child will begin to do better in school, or that your husband will unload the dishwashwer without being asked.  So, the next time you feel that little bit of pessimism starting to take over your thoughts and eventually actions, remember the importance of hope and act on it.