Thursday, May 01, 2008

Blogging Against Disablism Day - 2008!

"Coming to terms with Normal"

This is my 3rd year participating in Blogging Against Disablism Day. Disablism is a term used to describe discrimination against persons with disabilities. The main focus for Blogging Against Disablism Day is to point out some of the challenges that face individuals with disabilities, as well as to raise awareness about various disabilities. To find links to read and enjoy the post from others in support of Blogging Against Disablism Day 2008, please go here. To read my posts from 2007 and 2006 (about Discrimination and the Challenger League*) go here and here. To understand more about the term "Disablism", please read the piece, "One in Seven" by Lady Bracknell.

This year, I want to tell you about a 5 year journey I’ve had in coming to terms with the word “normal” and how that word now applies to my handicapped child.

Definition of normal: According to norms or rules; Usual; ordinary; Healthy; not sick or ill.

When you become the mother of a child with special needs, the word “normal” suddenly becomes a dirty word. It is a reminder of the normal life you’ve now lost and a description of what your child is not. In order to put less emphasis on the word normal, many parents of special needs children often refer to “normal” children as being “neuro-typical.” To me, changing the name or phrase doesn’t take away the reality.

Our Jenelle is now 5 and ½ years old. We’ve been living with the realization of her special needs for 5 years now. In these 5 years, I feel I’ve come full circle in coming to terms with her disability, and with the true definition of what normal really means to me.

“According to norm or rules” – This part of the definition of normal happened for us very early on with Jenelle’s disability. There are milestone markers to be met by an infant (rules) and she clearly wasn’t meeting them. This was our first taste with those words, “not normal.” Because she was just a few weeks old, it was hard to come to terms with it. She wasn’t meeting the norm, and yet we had no reason for it. No answers. She still had a lot of growing to do as well. I think in the beginning, special needs parents can often fool themselves into thinking that “normal” is still a possibility for their child. The reality is that it is not.

The day we took Jenelle home as a baby, we were under the impression that everything was fine. On that day she was a “normal” child; a very good and very quiet baby. Milestone markers are there for a reason, and eventually the fact that she wasn’t reaching her milestones was hard to ignore. Milestone markers are there to raise attention to possible problems with an infant. When Jenelle failed to meet the 6 week milestone of supporting her own weight, we began to realize that there was something wrong, and definitely not “usual” or “ordinary” about our child.

“Healthy, not sick or ill” – this is the most misleading part of the definition because our Jenelle was healthy, and definitely not sick or ill. She just wasn’t meeting her milestones. How could that be unhealthy? I think the hardest part of “normal” for me were her first test results. As we searched (and continue to search) for some answer to why our child is the way she is, each and every test result was normal. The only exception was the EEG. The EEG was abnormal (finally something to show we weren't crazy!) It confirmed she was having seizures. Persons with epilepsy can look very normal, and yet epilepsy can be a very debilitating disability. And in a weird way of looking at it, that abnormal EEG was normal because it confirmed she was having seizures! It is normal to have an abnormal EEG when you have seizures!

I have never been one to wince at words like “abnormal,” “mentally retarded,” or “handicapped.” These words to me are descriptive of what my child is like. For our family, a “normal” dinner consists of my eating with one hand while holding a syringe in the other to gravity feed Jenelle through her g-tube. We do this at our dinner table, at the mall, or at a restaurant. This act is “normal” for us as it has become part of our "usual" and "ordinary" routine. And that is everyday life with Jenelle.

As time goes on you eventually come to accept your child’s disability. Every special needs parent has to come to terms with mourning the loss of the perfect, normal child in their own way. I’ve learned that the paths in which one can take to come to accept the hand a disability has dealt them can be as different and as unique as the disability itself. Denial is a very safe place as coming to terms with abnormal is difficult. After the grieving, and the learning, and the heart ache, eventually comes acceptance. Eventually we learn to accept that our life is the way it is. Our life is normal to us, even if you have to twist the meaning in that definition to fit our circumstances. Once you find your own definition of normal, I think you’ve come full circle in dealing with your child’s disability. And life becomes normal again.

* As a follow up to last year, I wrote about starting a new Challenger Little League Team with our local league. If this is your first visit to our website since that post last year, please check out the video below of my Jenelle walking to first base! The Challenger Program we started is enjoying a very successful first year. Not only are the disabled children enjoying the game of baseball, they are simply amazing to watch. I am touched by the lessons the “Neuro-typical” kids are learning from the Challengers. If your local league does not have a Challenger Program, I encourage you to look into starting one. The gift from being involved in this experience is simply amazing, as a parent and as a volunteer.


akakarma said...

What an honest and accurate post, beautifully written! I hate that word normal! Who the heck is normal anyway?

Anonymous said...

Beautifully written.
Yeah, normal.

I have a dear friend who described the aftermath (of a tragedy in her family) as "The New Normal". I have taken that term and applied it to our family and my disability and my son's neuro and developmental issues and it helps, because none of us fit the parameters of normal and most of us never will, so we have new parameters and we move forward. And even if it is a bit of a mental trick I play on myself on some days it's all I have to hold me together so I can move forward with my little guy.

Giant giant hugs.

Kari said...

This is beautifully written. We too are living what I refer to as the "New Normal" Sometimes the word Normal still burns.

Ruth said...

I love your Garrison Keillor quote at the bottom of your page. I also like what you said about acceptance and the process that goes with that, which includes denial. Hope you don't mind I link to this on my blog for other parents (and everyone else) to read, learn, think.

Lala!! said...

Hi! Thanks for visiting and commenting on my blog today!

Would you be happy to link?

Any thoughts on enteral feeding would also be fantastic! I love to post short stories from other enterally fed patients or families! There is an email link top right of my blog if you would be happy to chat!



David said...

What a wonderful post! Thanks for sharing.

Attila the Mom said...

"Normal" has always been relegated to the same word refuse pile as "stupid", "retarded", "my mother always cooked meatloaf 'this' way" and "your butt looks big in those jeans" in our house. Not allowed.

In this day and age, what is considered "normal"?

Just loved your post!

Unknown said...

After my daughter was diagnosed with Epilepsy she cried, "I just want to be normal." I took her face in my hands and looked directly into her eyes. "Have I ever called you Normal?" I asked. She shook her head. "Why is that?" I continued. "Because I'm special and special people don't get to be lazy so they can be normal."

Long before she was diagnosed, long before we were aware there was a problem I had told her that she was special. She is extremely intelligent and I wanted her to know that striving for normal is not acceptable. Each child should be striving for their best no matter what that is.

Thanks for a great post and an amazing blog. Love visiting as I always feel uplifted by your spirit.

About Nancy said...

Thank you for sharing this insight. I battled accepting our daughter's disabilities for many years. It is a difficult road, but God has a grand purpose behind it all. You are a very special parent indeed!