Monday, December 7, 2009

When ECFE Breaks My Heart, Part 2

(for Part 1, click here)

So, there I am, choked up, teary eyed and embarrassed beyond belief. I am not a huge fan of crying in public. In response to a question regarding how I knew something was "off" in Jonathan's development so early, I was explaining that... while everyone seemed to think I was nuts... my previous background in autism gave me some insight into the 'red flags', so I pursued assessment earlier than most. And then, the inevitable comment:

Lead Teacher (paraphrasing): OH, God meant for you to be Jonathan's mother! What a blessing for him!


I have heard comments like this before:

God picks only special parents to take care of these little angels...

I could never do what you do.... you have been chosen to a higher purpose.

God only gives people what they can handle, and you are meant to be his mommy.

These special little angels are sent here to teach us something.

Ok, let me explain something to any dear readers out there who do not have special needs or disabled children.

Don't say crap like this. EVER AGAIN.

Now, I think people are trying to say is that they think you are a good parent and they think that the child is lucky to have your support and love. Cool.

But this is what I hear:

Apparently, you believe that God has rewarded me for my education, training, and desire to help others by giving me a child with a disability so I can experience the sadness and anguish that causes. If I had just quit school and worked at Wall Mart I would have a "normal kid". And, of course, because YOU don't have all the fine virtues I have, you are safe from ever being 'blessed' to have such a special child. Also, only people who are good and educated and "capable" have disabled children, because God would never give an idiot a child like with a disability. It would seem that if you ever did have a child with a disability, you would give it up for adoption or leave it in the snow, since you could "never do what I do". And thank goodness God gave him to me to raise, because apparently all disabled kids are here to teach you how to be a better person.

Let me make this very clear. I am no different than you. Any parent .... ANY PARENT... could be in a similar situation at some point. You do what you must. You rise, or not, to the occasion. I do not believe God gives special needs kids like some kind of "gift". Frankly, that would just make me pissed off at God. Sometimes, shit just happens. God, or Allah or the Universe might be able to lend me a little strength, but I don't think our lives are like some massive chess game that is under some kind of master control. There are plenty of kids, special or otherwise, with crappy parents who shouldn't have children. That is just how the dice rolls.

I have no superpowers. There is no difference between you and me. You cannot construct some magical fate to separate my reality from yours. I am not chosen. I have and will continue to make mistakes. I may not be able to handle this. Do not assume I.... or any other parent of a special needs kid.... is ready, willing and able to handle this.

Our kids provide an opportunity. We can learn from them. But don't give them the JOB of teaching us. They have enough on their plate. Each of us has the opportunity to learn compassion, understanding, strength, courage, and justice from all the events of our lives. And maybe someone will learn some of those lessons by knowing Jonathan. But that is not his job. His job is to be Jonathan. To make the most of his life. And my job is to help him because I am his mommy and I take my job seriously.

Jonathan might have gotten lucky to have me as his mom. And I am lucky to be his mom. But we are as real as you. We could be you. And when you accept THAT, you will truly learn how to have compassion and understanding for us.


abby said...

Amen! I couldn't have said any of this any better myself.

Anonymous said...

Exactly my thoughts when people say things like that to me!

Anonymous said...

I hear this all the time especially from my neighbor. I wish I had the courage to say those words to her somedays. Well done.

trishag said...

Exactly. Perfectly said.

Rob Rummel-Hudson said...

That's exactly right.

pixiemama said...

YES! The "God never gives you more than you can handle" line comes up, I have to suppress the urge to swear VIOLENTLY at the person bestowing such BS on me. My usual response is "Then God really doesn't know me too well, huh?" with a curt nod, then I walk away. Unlike you, I had no "educational advantage," not that it makes any difference, which is exactly your point. Our children are our children, regardless.

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Anonymous said...

I am a teacher and I get the comment "I could never do what you do all the time" I say I love what I do. I say if you don't love working with these kids you shouldn't. They deserve to be taught by people who love them. I couldn't teach a general ed class and I wouldn't try. God gives us more than we can handle alot of times we just have to catch our breath and wait.

Lisa said...

Thank you! I am new to your blog and read some of your past posts. This one really says what I've been thinking and feeling for a long time.

Atomicmom said...

Thank you for this post. I want to print it out and put it on little cards that I can hand out whenever I get a well-meaning but hurtful comment like that. I think I'd need to print out a lot of them. I won't have the guts to do it, but it makes me feel better having read your post!

pattinthehatt said...

Thank you for this. I hope it reaches a lot of people.

For a long time I have had similar thoughts when someone says such a thing. I do try to keep in mind that people mean well. They don't really know what to say, but they don't feel that it's okay to say nothing, so they try to find a way to put a positive spin on the situation, endowing it with a higher purpose and you with special qualities. I try to remember, even as I wince and/or roll my eyes on the inside, that they are speaking from ignorance, not malice. You get a similar rash of comments when you lose someone close, though it doesn't last as long. People blurt out the most amazingly stupid things- but almost all of them mean well.

Please don't think I mean this as a criticism of what you've said. You are right on the money, and it needed to be said. I just wanted to share my thoughts because I know that taking that POV has helped me deal with some mind numbingly ignorant statements.

As far as god not giving people more than they can handle, how then does one explain people who lose their sanity in the face of such situations, or even people who kill themselves because they cannot handle things? Less likely to be noted, but also important, people who barely take care of themselves because the amount of time, money, and strength are mostly used up taking care of their beloved child who has so many needs? Those people are sometimes dying small deaths, too. I suppose someone very devout will say that those people should have turned to god and they would have been okay. But if god made them, he knows how they are, and he knew it was unlikely, or even impossible, that that would be the course of action. What about people who abuse their special needs children because they are both clueless and cruel, like those foster parents in Cleveland who kept autistic children and other special needs children in cages? Was god guiding their hands? Really? You want to argue for that kind of god as the god of love?


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