Monday, January 03, 2011

On Being a SN Parent

As the parent of two children with disabilities, like it or not – I am a member of the “parents of children with special needs” club.  Being the parent of a child with special needs is not a role that I embrace or a role that defines me.  There are many parents out there who are better suited to be parents of children with special needs. They accept their role, if not willingly, then certainly without resistance. They march forward with a positive attitude and the resolve to make a difference.  I admire and respect these parents - they are the champions of change. They gave us the ADA and the IDEA. They push and they get results – whether it be for their own child or for the disability community as a whole.


I’ll admit that I started this journey with great hopes of at least being a champion of change for my own children.  I fought the insurance company so my deaf daughter could have the newest technology implanted in her head.  I moved half way across the country so she could attend one of the best schools for the deaf.  I gave her the best I could and when she turned eighteen, she pretty much turned around, gave me the finger, packed away the cochlear implant and tossed aside everything I worked so hard to give her – hearing and speech.  

I got another chance with Jack.  I worked with him, pushed him and wished him to walk, talk, eat and breathe on his own. I made sure he had the therapies and education he was entitled to.  I travel 1500 miles to give him the quality medical care he deserves.  Despite giving it my all, there has been no progress, no successes, no "inchstones" achieved.  In Jack’s case, his disease won’t allow it.

Perhaps I don’t embrace my role as the parent of a child with special needs because I suck at it.  I don’t say this in a “poor me, I’m a failure” kind of way.  I don’t think I’m a terrible parent, I’m just not a good special needs parent.  Or, perhaps I’m not a good special needs parent because I refuse to embrace it? 

Each of us deals with our role as a special needs parent the best we can.  I believe we are all champions of change – whether it be in making a difference in the lives of many or making a difference in the life of one.  And for some of us, it’s being a champion of change in ourselves as we strive to get up each day and give it all we’ve got despite the fatigue, grief, stress and resistance to embrace the role.   

Regardless, we are all CHAMPIONS.


[This post was inspired by today's post on the Hopeful Parents website.]

8 comments:

worthy said...

I agree Ann - you ARE a champion. You are always so supportive and share your life with us, which is a wonderful thing to do. I suck at being an SN parent too. I often think that Sam's TA does a better job at getting him to eat than I do, but then I think, hey, she clocks off at 3.30 and doesn't have the nights with little sleep that I do, so she probably has more energy to push than I do. We are all doing the best we can, and that is all we can do xxxx

Susan said...

Ann, who are you freakin' kidding?! I don't think any of us are happy about the hand our (we and our) children have been dealt. Embrace it? Who does? But you, you have done so much for your kids! And then there is all you've done and do for the Trach Forum, the Willow Tree Foundation and Touchstones. Suck at it? Hardly! You inspire so many of us and while yes we are all Champions you are especially so!

Ann said...

Just to clarify - when I say "embrace", I don't mean "like". I agree, few people like being the parent of a child with SNs. However, some parents are more accepting than others. Some parents see it as an opportunity. We all come to the table with unique personalities and backgrounds and we react to our role as SN parents (as with everything we encounter in life) accordingly.

Thanks ladies for your comments!

The Hogan family said...

Oh Ann, you always make me think...I personally think this hand that we were given, SUCKS. I am glad to know that I am not the only one who feels like they aren't doing enough, although as the other ladies have said, I think you do a remarkable job as a champion. FWIW, I for one get tired of it all too! You are doing a great job....keep it up!

Lisa said...
This comment has been removed by the author.
Lisa said...

Ann I love this post and I'll tell you why.

Sometimes I feel like there is something wrong with me, I mean four years into this and I still have complete bouts of denial.

I don't think I can ever embrace this and 100% accept it, wouldn't that be like admitting defeat for any kind of normality?

I think we just do what we do and sometimes we are on auto pilot, for me anyway. Although while we are in auto pilot mode the occasional asshole intervenes and snaps me out of my trance. (the stares, the questions, the rude comments, the finger pointing.)It is then my auto pilot mode comes off and I freaking fly that plane with all my might.

I think you are well put together, strong, and emotionally stable will all you have been through.
You do an amazing job.

CS said...

First off, you're an inspiration to many, whether you embrace your title of SN mom or not. You have inspired and encouraged me on many occasions. Knowing that you're in this for the long haul and can still have humor and grace about the hand you've been dealt is what makes you extraordinary.

Also, I think you've accomplished tons with your daughter. Yes, she has thrown everything you've sacrificed for her away (hopefully for just now). But in everything you've given up for her, you've given her the independence that has allowed her to throw it away. Not that what she's done is fair or right on any level but aren't we all just trying to give our kids the independence they need to live life? Isn't it our goal as parents to push them out of the nest and hope they fly? She's flying, albeit with a broken wing, erm ears, but she's still flying. And that's something you can give yourself props for, as my DH would say.

Anonymous said...

Ann, you're a great person no matter what. You really gave me a shot in the arm the other day with those movie tickets. It forced me to go to the movies and pretend I'm normal for a couple hours. Spiderman3D was fun...haven't seen any 3d movies before because I could never leave the kids for fear of...well you know. Anyway, you're a very good person to go through all this travail and still think of others in similar straights. Apart from caring for my children, I've been very inwardly-focused since CMD stepped into our lives. It's a Herculean effort not to be bitter. And plus...nobody, NOBODY understands us. How could they? This shit's pretty nuts. Sometimes I count myself lucky that I'm not running naked through the street like a lunatic after what's happened. I guess there's still time for that down the road, ha! So anyway, thank you from the depths. You're pretty cool Ann, thank you!
-Matt