Helping Outcomes for Parents of Exceptional Children

 

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Vanessa Infanzon Story

 

 

In 2003, my husband and I were blessed with Bennett Ryan, a beautiful red-headed boy with big brown eyes, tiny fingers and feet. So perfect, so sweet - we were so in love with him. So in love, it was not until many months later that we realized that Ben was not progressing - not moving his head or body, not making sounds.

Since we did make the realization that something was not completely right, we have been through a lot. It is my hope to share our story and possibly make it easier for others in similar situations. Everyone has a story to tell and I am a firm believer that sharing the good and bad of your own life is the best way to heal, best way to connect with others and the best way to find out that we are all alike in some way or another.

And I am selfish too. This is not just for others, this is for me too. I have wanted to be a writer for a long time. I wanted to be Carolyn Keene (author of the Nancy Drew series) first, then Erma Bombeck. By sharing our story, I also get to try out something that seems to sit somewhere inside of me.

Since I am starting this 6 years into Ben's life, I will skip around from practical stuff I do now, to some of the early years coping with it all. I posted the web address "Welcome to Holland" poem. My mom gave it to me when we first learned about Ben. It did a great job expressing how I was feeling. I read it again about a month ago and it has such a new meaning for me now. One line talks about how you may meet people you would have never met because of this experience - we have met some of the most wonderful and caring people through Ben. He seems to attract only the cream of the crop.

So here we go...

Me, Spontaneous? Never!

Let me start this off by saying that I am the kind of person who will make a “to do” list that will include “Plan something spontaneous.” And I see nothing wrong with that. I received a call two weeks ago from my son’s case manager. Her supervisor, as part of her graduate school work, started a non-profit organization, called HOPE (Helping Outcomes for Parents with Exceptional children.)

The mission of HOPE is to promote healthy relationships for parents of children with disabilities by providing opportunities to engage in activities within their community. Providing parents with the opportunity to embrace and renew their partnerships to be strong for their children and maintaining the family unit. (Taken from their brochure.)

So the call I was getting was to ask if my husband and I would be willing to go on short notice the next week - Thursday and Friday to Myrtle Beach. I didn’t say, “Hell, YES!” – I am way too polite for that, but you bet your ______, I was thinking it. So Ryan and I drove to Myrtle Beach Thursday morning for a quick trip to the ocean. And did I mention Thursday was my birthday? Things just seem to come together sometimes.

After receiving the call I started looking up what “they” say about parents with a child with special needs. Despite a staggering 80-90% divorce rate, that may or not be true, I found good information. Oddly enough, a few bloggers wrote about marriage this past week too. Here are a few items worth reading:

 

Resources
For Better or For Worse
Dr. Laura Marshak, author of Married with Special-Needs Children (co-authored with Fran Prezant)

Authors counsel couples with special-needs children

Love, Marriage, and all that Good(?) Stuff

 

I think more than anything that made this mini-vacation so great was that it was spontaneous. We never would have planned a trip away from the kids in less than a week’s time. We would have felt guilty taking off from work and asking friends to watch the kids…but because it was “given” to us, everyone jumped in to help make it work.

Marriage for everyone is hard work. Add any special situation, and it intensifies the experience. The communication, unconditional support, respect and friendship all need to be there for a successful relationship. We all have to take the time to develop it and then keep it going with very regular maintenance, which can very happily happen spontaneously! Who knew?