Sunday, January 06, 2013

Just the Truth: When Life's Journey is Unexpected

There is an article bouncing around social interwebs which claims to take a bald-faced look at the "truth" of having a child with autism. That "truth," according to the article, is that having a child with autism destroys your life.

It is the most horrible article I have ever read in my life.

For one, it is not the truth. It is the opinion of a person watching a family with an autistic child (not even their own child), noting how the parents had to give up their careers and have no one to help them but a set of retired parents- who are now at odds with each other, because Grandpa resents having to spend his retirement money on his grandchild. I will spare you both the details and the article. It is a waste of valuable time and will just skyrocket your blood pressure.

No, raising a child with special needs is not easy. It is very different from raising a child without special needs, because most people understand and know what to expect in raising a child without special needs. We spend a lot more time in "therapies", rather than "extra-curriculars." We know fancy words such as "propioceptive input" and "pathologic encephaly." We understand plenty of weird acronyms, such as "IEP" and "BIP" and "FAPE".

I still watch the kids at the park and think "wow, that kid needs some OT."

My life is not what I had thought about and planned for. It is, in fact, very, very different. No, I do not have a full-time job, but a string of part-time gigs and contract work. My husband and I go out by ourselves about twice a year, though we have finally found someone we could use for babysitting (an aide with our OT office does babysitting on the side, and is awesome with our guys). Up until now, it was Grandma or else we stay home. Sometimes, that is how life goes. Not as planned.

Does that mean my life is "destroyed"?

My life is different. I don't know many people now without special needs kids, so I am not quite sure how different. For us, this is normal. To go on a trip, you don't just get in the car and go. You have back-up plans in case the trip doesn't work. You pack familiar items, even for a day trip. We are in love with Steve Jobs and Apple for making our lives so much easier. Did you know there are some really awesome apps to help kids with pincer grips and eye-hand coordination and... wait, am I off topic?

Do I sometimes feel sad about not having a full-time gig in a nice little college somewhere and running off to India with my family every couple of years? Well, yes. It was a nice dream. But that's not how life worked. And I will get him to India. It just needs a lot more planning, and won't be happening very soon. However, I did manage to get my passport updated last year. Just in case.

Yes, my life is different, and it changed our plans and dreams and ideas of the future. But we will never say we no longer have one. We have a life, and it is an awesome adventure of a life. We will work through the challenges- just like everybody else. It has ups and downs; even if the downs dip a little lower, the ups rise a little higher. Or perhaps, they just dip and fly at different moments, for different reasons. Life is more unexpected in many ways.

But you know what? Different is not demolished. Unexpected is not always bad. And like Bilbo Baggins, I'll never be the same... but I'll have plenty of good stories to tell.


Miz Kizzle said...

An equally ridiculous argument could be made that getting married destroys one's life (the loss of freedom! The expense! Putting up with the other person's friends!) Or that having children, any type of children, is a horrifying burden and a soul-wrenching time-and-money suck.
As someone who is physically disabled with a spinal injury, I suppose I could be looked upon as a less-than-optimal wife and mother whose existence makes my family's life miserable.
Of course that's a load of crap, and the kind of thinking that led to the eugenics movement and the death camps of Nazi Germany.
The writer of the hateful article should be ashamed of him/herself.

farmwifetwo said...

OK.... since I have even more freedom than you, go out atleast twice a month with a teenage babysitter with Dh and friends. Have travelled - Grandma came to help - and Dh and I are leaving for 4 days in Feb... I'm going to play devil's advocate b/c I really detest comments as you last line Miz Kizzle wrote. I'll also note since you didn't leave a link I haven't seen the article but I have a good jist since this happens regularly in autism-land.

See, that very attitude is what happens when parents self destruct in autism-land. The slamming of how horrible they are, the how perfect a parent I am. Then things go terribly wrong and people blame the parents instead of looking hard at the mirror about themselves and their ignorance to people that are screaming for help and instead of giving it... they get slapped at. Not by "normal" parents... no... but those that have children a lot like their's.

See, I know I've got it good. I know even at it's behavioural worst with my eldest it's nothing compared to some parents dealings with their children. Even knowing that my youngest will never make "normal" or "independant", I never complain because he's happy, learning, friendly, and "I love Mommy" (yes, I taught him to say that, and now he says it on his own with big smiles and kisses).

I feel terribly sorry for those people. Hopefully, they will get the supports they require and find kindness and compassion within the autism community... You can't expect "acceptance" if you won't give it in return. Which is why I lost respect for most of autism-land online... years ago.

Joeymom said...

Actually, the article is pretty hateful. But I want to move away from that, and to the goal of THIS blog- which is to be supportive and spread the news that life may be different, but that isn't necessarily bad.

But it would also be nice if there was more community effort to help. A nice center with trained people where you could drop Johnny or Janie off for a couple hours to go to a movie or grocery shopping would make a HUGE difference. And that is just *one* idea.

Bullet said...

The article is two years old - I am not sure why it is resurfacing now. It's by a woman named Carol Sarler and appears in the Daily Mail.

Joeymom said...

It pops up pretty regularly. Once out there, always out there.

kristi said...

Challenging, yes. Hard, yes. Frustrating, yes. BLESSED, yes!

Miz Kizzle said...

Farmwifetwo can "detest" my comment all she likes. It reflects the truth as I see it from the point of view of a disabled person. Ever heard of a man named Peter Singer? He's a fairly well-known philosopher who teaches at Princeton University. He supports animal rights and conservation of natural resources. He also believes that mentally and physically handicapped people should be put to death -- humanly, of course.
That's disturbing stuff. I don't like being pitied because I walk with a cane and I certainly dislike the thought that there are people out there who think that less-than-perfect mental or physical specimens shouldn't be allowed to live.