Tuesday, September 29, 2009

Rocking the special needs boat...

A little foreword. When I was in high-school, I had a friend who knew me well. And when I was in a real roller-coaster of a mood he would always clear the path for me. He'd over-dramatically step in front of me and say "Everyone watch where you step...Deana's feelings are ALL OVER THE PLACE!". Consider yourself warned...Deana's feelings are AAALLL over the place today! This is not to take personally, rather, hopefully a reminder to us ALL that we're all in the same boat!

As a mom to a special needs child, I have learned so many things that I never would have learned with a typical child. One of which is complete, unabashed inclusion of all people. Because this life can be so isolating, and lonely, my eyes have been opened to so many other communities of people who would have these same feelings.

Because of that, I absolutely abhor exclusion. Whether it be not letting your kid say hi to my kid because you don't understand his abilities, or other special needs parents thinking that they have one up on you for one reason or another, and belittle you because of those thoughts.

Several years ago, I got a real taste of what that was like. A parent of a child with Max's same condition really laid into me for the treatment he was on. I KNEW the treatment we had him on was right for him. I KNEW his doctors were right. I KNEW that I was not harming Max in any way with the extreme treatments we were doing. Because I KNOW Max. I tried and tried to get across that each child is different, and you have to watch the child, not necessarily what the text book says. We are constantly learning about their disease, and therefore, the treatment will need to evolve as we understand more. This parent was forceful in their side of the "argument" until the point I simply said, we will have to agree to disagree, and that neither one of us was doing anything to harm our child, and had their best interests at heart.

In this past year that same parent's tune has changed. Their child has entered into the same study Max is in for their rare disease. Since we were there, the treatment on the kids entering in has changed to what Max has been on his whole life. The "radical" treatment that parent got onto me about. Their child has shown tremendous strides in lowering the bad levels that can harm them in this diseasse. To be quite honest, I felt absolutely vindicated for a short moment. But quickly thought...it just isn't what it's about! It's ALWAYS about the kids! Not the nonsensical arguing between parents about who knows more.

All that to say, I have made an effort to meet new special needs moms on their blogs in the past couple of weeks. I am coming to terms with the fact that this is the community I am in, and can either jump in and become a part of it, or always sit on the sidelines feeling like I don't quite fit in any community any more.

I follow these blogs for a week or so to try to get a feeling for what they are about, their child's conditions, and abilities. Then I just make the leap and write a comment. I've never been an outgoing person, in person or online, and it always feels like a big effort for that first comment.

I recently made a comment on one of these new parents' blogs, and someone down the line disagreed with what I had to say. In a very passive-aggressive way. In one of those " I obviously know more about all things special needs than you do" way. And it totally lit me up. I wanted to strike back. I wanted to hack their website and crash it. I wanted to wish a wart upon their face. But instead...I just left the page wondering why I even tried to enter into this conversation.

And it stuck with me...and it bothered me. And I started thinking of things I would say if given the chance. Then remembered I always have that chance right here on my own page. So here it is...things I would say to any parent who thinks of themselves as better than the next one on the very similar road of parenting a special needs child.

Because you use more vernacular in your explanations, does not make you smarter than I am, nor does it mean you understand my child better than I do. Perhaps I use layman terms for those new to this journey who just found my blog and are new to this life of special needs, or for family members who visit my blog and may not understand medical terms.

Because you use different modes of equipment for your child than I use, does not mean that you have a better idea of what all special needs children should use. I know my son, and I rely on his therapists and doctors on our team to help make that decision. And while I will take suggestions from other parents, I have to remember what works for their child may not work for mine. And that's OKAY!

Because your child is able to go to school, does not mean that my child doesn't do just as much at home every day. It also does not make me a bad parent OR a better parent for making my son stay home to keep him healthy.

Because you can throw around heads of departments' names and home phone numbers does not mean your child is more important to them than mine is. I have those same numbers for my son's doctors. And keep that information quiet, only to be used in emergency situations.

Because you are the head of organizations, your child's special olympics coach, sit on advisory boards does not mean you have super human strength and more time to give. We all have to fill our lives with something to make us feel like we still have something to contribute.

Because you go to a counselor about your feelings about your special needs life does not mean that you can give unsolicited counseling to a new parent's feelings.

Bottom line...we all have to reach these markers in our lives in our own ways. I'm sure there is competition and infighting amongst parents with typical children too. But when you are aware of how hurtful it is for others to judge you based on just looking at your child, why on earth would you judge another parent by simply looking at their blog?

Believe me, if I follow your blog, and comment there regularly, you don't at all fall into these categories. I believe very strongly in surrounding yourselves with people that can lift you up, not tear you down. And in my life online or offline, I intend to do just that.

There we go...fully vented. Rant officially over.


ferfischer said...

It's a strange world, isn't it? Sometimes I wonder if people lose their perspective, or maybe there is a point at which I will be one of those people too, maybe that's just part of this journey. Who knows, but lord knows we're all too busy to be judging each other! I don't know where they find the time!

Deana said...

Yes Jenny! Where DO they find the time?? :) That made me laugh! Hope your visit today gets you some answers.

t said...

Hugs to you Deana.

Helen said...

Dear Dena

When I read this entry it brought me to tears, I am sure you already have a full plat of emotions and the last you need is to be treated meanly, I am sorry for that, I feel for you and I know how it is to feel that you don’t fully belong to a community on of course a much lower level, all though I do not live in the special needs world that you do I have learned a lot from your blog and it got me into reading other blogs for Mom’s with kids with special needs, and I honor you for all the challenges you go through everyday and I fully respect you for that, keep on doing what you believe in and God will always be there to guide you, I think we shouldn’t think of it as two different communities for me I see it one if others have more challenges and needs to look after more than I do, that just means that I need to be with them and help and support them in any way I can and just share with them life, I know I can never know how you feel since I am not in your shoes but if I were living closer I would want to be part of your life and would love to meet Max and have Ahmed meet him and play with him and be in the same community FRIENDS.

Love Always


Deana said...

Thank you Vijay! I got that hug!

Zainab, I can not wait until the day our boys meet! Your words were very special to me, something I really needed to hear. Thank you, my friend.

Ray said...

When I read this : "A parent of a child with Max's same condition really laid into me for the treatment he was on" ....my heart skipped a beat thinking it could have been me! ...but as I read on..I knew exactly who you were referring too...and remembered exactly when that incident occured...in fact, I remember like it was yesterday and was offended too!...I jumped then to defend you...saying that my geneticist admired your geneticist and was open to anything he said and recommended for Max!! You and Steve have always been an inspiration on how you go on doing things for Max...even if my son is a bit older than yours and share the same disorder...you are way ahead of us!! Wink! wink! I feed from your experience and your knowledge! ... if "I" ever one day.. write something that might make you cringe..know that I will never ever do it to hurt you in any way!! Raising a child with special has tremendous benefits ...but it does gets lonely somedays! Keep on writing beautiful blogs that reads like a storybook...you should really consider publishing them one day!! :-)

Deana said...

Ray, I don't think you could ever do or say something mean on purpose! ;)

One day we'll meet...our boys will meet! We should try to go to NIH together!!! Wouldn't it be fun?

Anonymous said...

That would be so neat to meet all of you! we are warming up to the idea of going to the NIH one day!! we got the paperwork to apply for our passport the other day...(didn't fill them out yet..LOL) BUT..once we do..our Canadian passport would be good for 5years!that's a start for us hi!hi! baby steps! If you remember, we never took a plane in our whole entire life!!...just living under rocks in stone age!! DUH!