Friday, January 6, 2012

Flashback Friday

Flashing back two years to January 2010 (but to update, I have since lost touch with Joan and can no longer find her on Twitter nor Facebook):

Ten Common Traits
By Ali Harper, Small Portion of a Life's Journey

On this crazy journey, as a mommy to an extra special little one living with hydranencephaly, I have miraculously met many people just like myself. Shocking, I know! But not really, if you think about it. 
I remember one process of thoughts that ran through my head one day, and they continue to echo once in a while to this day: I remember wondering why I did not personally know anyone who had a child with severe disabilities or noticeable special needs. Since I thought through all the people I personally knew and  couldn't think of one person in my life who did, I thought that it would one day be me. Truth be told, I really believed that I would be the one...why, I am not sure. 

Although I thought that once, and have rethought it many times since that conversation with myself on a drive to work one day...I never truly believed that it would be me, or that it COULD be me. 
I was not strong, or courageous, or vocal enough to stand up against others who faced me with an opposing argument...but perhaps I'd never felt strongly enough about anything for those characteristics to come shining through. I must say that these strengths come to you in your darkest moments when you know nothing else to do but fight.

Regardless of where we were before embarking on this journey, we are all on the same pathway full of unknowns. Every day I have "inner conversations" with myself where I am trying to answer questions and convince myself not to worry over obstacles that may never present themselves. The worry, the opposable hope, the helplessness & the great desire to make everything better...just never goes completely away.
I found this article from a wonderful connection I have made on this journey, Joan Celebi from Special Needs Parent Coach. If you are not familiar with her, check out her blog and her website and her book, for that matter :) She is a wonderful source of information and resources...  you can also find her on Facebook or Twitter. Thanks Joan, for all that you do! This explains why we, as parents of little ones with extra special needs, have this unexplainable bond upon meeting...or even upon not ever meeting. Here's the article with my added notes :) :

Ten Great Traits of Parents of Children with Special Needs
by Joan Celebi, Ed.M., CLC

Are you on Twitter?  More than just a social networking site, Twitter is increasingly a place where you can connect with people, resources, and information.  The Twitter special needs community is growing daily.  If you're not already a part of it, go to and open an account (it takes about a minute).  If you'd like to make some great special needs connections right out of the gate, find me by typing joancelebi into the search box, then click on "followING" (not "followers"). 

Most days, I post links to new articles and valuable resources for parents of children with special needs.  Also, about once a week I post a "Twitter List" or "Twitter Mini-Series," with practical tips, doable steps, and various things I've learned over the years as a mom of a child with special needs, and a life coach to parents of children with special needs.  Much of what I post on Twitter never makes it to this blog, so head on over to Twitter and start following me and the many other special needs parents and professionals who are sharing information literally every minute of the day!

Here's something I posted on Twitter recently that I wanted to be sure to share with blog readers.  It resonated with many of my Twitter followers.  I suspect you will see yourself in this list!

Today, a Twitter-List just for moms & dads of children w/ #specialneeds. Great traits of parents of children w/special needs:

10. Camaraderie: meet someone new + find out they have a child with special needs = instant friend.
*seriously, it is like a holiday of some sort to meet other parents of children with special needs. There is always a seemingly awkward silence when you meet another mother who just doesn't get what you're facing. They don't want to ask questions or insult, and you don't know how to divulge enough information to inform without making them feel uncomfortable. Other special needs mommies, they just get it!

9. Sense of humor – it carries us through even the worst of days
*without this, I would have many tear-filled days spent in the comfort of my bed. Being able to put a positive, humorous spin on the obstacles at hand really gives you a better way of looking at the situation and helps to lighten the load.

8. Appreciation – for what's truly important in life
*before having Brayden, or facing a terminal diagnosis for my child, I now notice how many things in my life I had taken for granted. Moments are not taken for granted, no matter how seemingly unimportant they are to some...

7. Determination – a "do whatever it takes" attitude
*having to fight, regardless of the oppositions standing in the way...and we all have great amounts of oppositions, disagreeing carers, etc.

6. Vigilance – often anticipating and heading off potential problems before they happen
*the more knowledge I have, the better equipped I feel to handle any proactive rather than reactive

5. Empathy – for others facing challenges in life, whatever those challenges may be
*a challenge is a challenge, regardless whether it is big or small...I value them all and hope to never lose this valuable trait

4. Intellectual prowess – from reading all those research studies!
*I am an expert in the field of neuroscience when it comes to the workings of the brain, the conciousness and most definitely in hydranencephaly. If I don't know about it, I will be finding out more about it and get back to you!! :)

3. Resourcefulness – more often than not, we find a way or make a way
*whether it is with positioning aids, overcoming feeding battles, adapting toys to accommodate our little ones, or getting the equipment and care we know our children need to have the best quality of life possible!!

2. Strength – mental, emotional, and physical -- and stamina, too
*I don't know about strength all the time...but it's there, I just sometimes have to drag it out of a slumber!!

1. Courage – we face challenges head on that we once could never have fathomed
*nothing scares me anymore, and no person intimidates me...seriously, I would go to blows with a sumo-wrestler if it meant a more positive outlook for my babies!!

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It is so true, that even if you never had these traits prior to becoming a parent of an extra special little indeed possess some or all of these traits by now! And in my opinion, it has made me a much better mother, wife, friend, & person all around. Who says we teach our children but don't learn anything in return?? I can certainly say that I have probably learned more from my children, than from any other one person on the planet...pretty good considering they've not even reached the preteen years!

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