Monday, September 22, 2008

Not worth the energy...IGNORANCE

We try very hard to make life "normal" for our son with disabilities, but it just isn't the same. Living in the "typical world" half the time with my other children helps me see that there is almost nothing there that makes the two worlds remotely similar. Not even comparable. Families of SNK (special need kids) can say they are normal and they try to be for the most part. But changing a diaper for a child that is of the typical age of not needing a diaper is not normal. Nor is using a feeding tube to get your child his nutrients. Or giving them medicines multiple times a day to stop seizures that aren't controllable.

People from the "typical world" that make stupid assed comments. This has been a topic that has hit many of the support groups that we belong too.

Just some things for example;
"Gee, I don't know if I could handle a kid with special needs"
Well sure you would. What the hell else are you going to do? You don't have a choice....its your child. Should we lock them in a room cause we can't handle it? Should we leave them in a corner and not help our own flesh and blood? If you answered Yes to the last two questions, please hit the X in the upper right corner of your screen, cause you're as a$$. :)

"Will he ever be normal?"
WTF?? Are you serious? What world did you grow up in to think this was an appropriate thing to say to someone?

"What is his prognosis? life span you know that kind of thing?"
This sometimes comes from people who don't even know the child. My response..goes something like this...1) does it really matter to you or are you just being a nosey MF'er?
2) don't worry about his life span...but if you continue to ask stupid questions I see that yours is getting shorter my the minute!

Or when people in the "typical world" make stupid comments of our situations like
"Maybe if you didn't buy all these "toys" and live within your means, it wouldn't be so hard."
Oh you are one funny person.Those "toys" are chairs, equipment and such to help the child. Or do you think we like these things all over our house looking like a hospital supply warehouse? DO YOU THINK we are out spending money on things we don't need? We are doing the essential things. Try going from two incomes to one because you are staying at home to ensure your child is getting taken care of. That he is so involved that you can't have both of you working because you are driving over 800 miles a month to and from therapies to HELP your child. AND if you were both working that you'd have to find daycare that would be able to take care of a special needs child and have trained caregivers for that child who are able to administer medications to him? Live within our means? Please....are you serious? If you think we're living high on the hog...THINK AGAIN!

There is a little boy of 4 yrs old that is always in the therapy waiting room when Daniel and I get there on Wednesday afternoon. And he use to watch me with Daniel from across the room, he has not graduated to making his way over to us and asking me a few questions which I politely answer. It is too bad that a little 4 yr old boy has more tack than many adults. This past week when I arrived "Austin" was sitting in the chair in the way back where I normally go to feed Daniel before therapy. I smiled and walked over there and he said "I was saving your spot for you and Daniel do no one took it" (there is no one else in there besides his mom!) so I proceed to thank him and sit down. The whole time I'm feeding Daniel he is asking me questions about Daniel and telling me about his past week. Cute little kid. He politely waiting until Daniel drank his bottle (yes he asked why D was drinking from a bottle and then said he wished he could drink from a bottle too cause sometimes he spills his cup!) and asked if Daniel could come play with him at the little table and read a book. I said "sure, I bet he'd love too (D was all smiles)"
And I can almost bet you that Austin will be sitting in the same seat next Wednesday waiting for Daniel to play with him, and not judging him.

Why can't all people be this way? Why can't people just accept that there are some differences between them and Daniel and move on?? Too bad its a little child that has more intelligence and sincerity than many ignorant adults. Check out the story from the maker of "Signing Time Videos"

People speak from ignorance of our situation, and frankly, I am very happy for them that they are blessed to live without the same worries.
They have their "typical" children, and for that i am happy.
But note this:
They miss out on allot of the beauty of life that we as SNP have, and for that I do feel sad for them. You will never experience what life is with a SNK. It is remarkable. It is something you will never understand. We are blessed more than you. From the outside it looks like we have horrible struggles, and you might feel sorry for us. Well don't. Cause you will never be able to look into my sons eyes, and see the love, the drive, the wonderfulness that is in him.

So don't feel sorry for our struggles, our situation....because we are getting something that you will never get to experience and know. There is a bond there between my son and I that you will never experience - and that bond...... it makes all the ignorant, stupid people disappear.

But were it not for our personal experience with disability, I suppose we would share that same ignorance. Because of that, it is hard for me to take their petty comments as anything but a lack of having walked in our shoes. I get angry at first but then I find it's just not worth the energy of getting upset, and I refuse to let some ignorant comments get me down.

So instead of getting into a war of words so to speak, we'll take that energy of ours that deals with disability.. and we will continue on our journey, and say People are ignorant and they may suck most of the time....but you are soooo missing out on our wonderful world, and for that, I feel sorry for you.

7 comments:

The unpregnantmother said...

Hats of to you!

mommy2twindaughters said...

I love reading this blog. You always write what I am feeling. It is different being a SNP but well worth it. My girls are 2 and in the last 2 years we have been asked some ignorant questions and usually I can come up with an answer, other times I stand there with my mouth open in amazement.

Justinich Family said...

I totally feel the same way. People say I don't know how you do it, or it must be hard. For me there is no other way to do it. I was given a special needs child so I take care of him the best I can and try to give him the best life possible, I don't know what else I would do.

Anonymous said...

I agree, i just feel like when people ask what the diagnoss is, its the most polite way they can think of asking, i mean better to ask than to stair right?

there is no easy way to ask, but they sometimes are trying to be polite.

-B

C said...

Toys. Snort. I'll show ya toys. It would be a privilege to worry about, say, a pool table or ATV. Keeping the training vehicle (BOSS car) charged so my kidlet can hone his skills and hopefully eventually drive a wheelchair all by himself? Riiight. Here ---> the door. Buh-bye.

I have four older NT kids, one younger SNK and, yes, the practical application of parenting is *very* different. I have wondered what piece of programming is missing from people who blather on down those paths of pity or obtuseness or just awful tactlessness. Too bad we can't install a switch, huh?

Hugs to you and yours.

Nelba said...

Amen!

laila said...

LOL- Mel that was so hillarious!!!!! Very well written and you hit it right dot- very true!!! XOOX