Angel Words, Volume 6, Late

WARNING: This Angel Word is maybe a little bit different than the others have been...

Yes, I know. This post comes a couple of days late. But Tuesday was a SUPER busy day (three therapy sessions and a GI clinic appointment- ugh!) and so we just did what we had to do on Wednesday! Yesterday, well...yesterday I have no excuse. I was just lazy! HAHA!

So here is my angel word for this week- TOUGH. Yes, angels are tough. We know that. But angel parents are also tough. In fact, I would venture to guess that ALL special needs parents are pretty rough and tumble! They have to be! I was recently on facebook, and saw an article about how the Iowa legislature has taken the step of removing any reference to "mental retardation" in the law books, and replacing it with "mental disability"- a move I applaud! Because not only is it less offensive, but it is also more accurate.

Several of the commenters on the story pointed out that someone is always offended over something, and that the special needs community is too sensitive on this issue. I just had to laugh. Sensitive?!?! They think we are sensitive!?!?! Truly, that is laughable to me. We are anything BUT! So I decided that I will share a list of ways that I, and I am sure other special needs families, are tough- probably more so than we will ever get credit for...

We are tough because-

*we have survived one of the hardest things that can ever happen to a person. We have survived being told that our child is not "normal" and will never grow up to have the life and the future that we anticipated and dreamed of for her. That is a deep heartbreak that I will live with for the rest of my life.

*we have to fight, on a near daily basis, just so that Ava can have as normal of a life as possible. We fight doctors, specialists, therapists, governmental agencies, school districts (already), social norms, family members...all while maintaining as excellent a level of care and life for our child as possible.

*we have to watch as our child is poked, prodded, suffers seizures, put through uncomfortable tests, all while reassuring ourselves we are doing everything we can for her.

*we endure stares, bad looks, rude comments, prying questions, and sometimes down right meanness- just for going to the grocery store or out to eat with our child in tow.

*we have to learn the lingo of complicated medical fields like genetics so that we can explain our child's condition to your average doctor.

*we spend endless hours at Arkansas Children's Hospital specialty clinics and offices. On a near weekly basis.

*we have had to make difficult decisions on who to allow to continue to be a part of our child's life, and have had to endure ridicule for those decisions.

I say all of this not to "toot my own horn" but to point out that any sensitivity we have is appropriate, and perhaps even earned in a way. The "R" word is certainly a hot point in our special needs community, and it is so because of the way society has chosen to use it. I was recently with someone that is sort of a friend of a friend- a person that knows about Ava but I don't know well- was talking about someone who was, as she put it, "ummm...'special.' " She didn't use the "R" word verbally, but she did with her tone and her attitude, and went on to make fun of the person. The word "retarded" isn't the issue- the attitude is! I was hurt and offended and I am still kicking myself for not saying something right then. I believe that anyone put in this position would become passionate about this issue. Anyway, that is another post for another time....

Shortly after Ava was diagnosed, my sister and I were talking about some things, and she said that she feels like there is a lot of sensitivity in the special needs community. I guess I could see how one could think that. I think some of that is honestly, inherited from one generation of special needs parents to the next. Because for so long, parents had to fight even harder than they do now. My goodness, 50 years ago, Cole and I would have been shunned for not putting Ava in an institution! As a special needs parent, each child's condition and how they are able to function with that condition is SO different, that there is absolutely no way that one piece of advice can be valid for every child, or even every child with that condition. So when someone- trying to be helpful or not- tries to tell me how to help my child when they don't know my child, I do get a little touchy!

Let me give you an example: We love most of the pediatricians at our clinic. Most, but not all. There is one doctor in particular- an older lady- who I absolutely refuse to see unless I just have no other option. Because every.single.time we see her, I get bombarded with questions like "Why is she not in a special school?", "Don't you think a school could do more for her than you are doing?", "Do you really think you are doing what's best for her? Because I think a school setting would be better." This lady knows nothing about my child other than what she reads in a chart. She has spent *maybe* 10 minutes with her throughout Ava's entire life, all during sick visits. And she has the nerve to tell me that I am not doing what is best for my child because she read about AS online and read Ava's chart?!?!

So yes, maybe I am sensitive. Because I have to put up with a lot of things from a lot of different sides. But I am pretty thick skinned too. If I wasn't, I would have lost it long ago! So here's to keeping it together- most days!  :)