Friday, September 19, 2008

Welcome to Beirut - my week

Some of you really enjoyed my post called - Welcome to Holland. Below is another "Welcome" letter but from a different perspective. Unfortunatly, this one is more along the lines of how my week went. Big things are happening here but frankly I am too tired to even talk about them. No worries, Carson is good. I have just been dealing with insurance, the government and case workers all week. Fun stuff!

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"Welcome to Beirut" by Susan F. Rzucindlo. I don't mean any disrespect to those who like the "Welcome to Holland" version, but in my house, most days are more like Beirut than Holland. I've edited it slightly for grammar and spelling.

WELCOME TO BEIRUT by Susan F. Rzucidlo

"I am often asked to describe the experience of raising a child with autis -- to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It's like this.."

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different from the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad.

One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "Your child has autism.

"There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping, like "Life-long diagnosis" and "Neurologically impaired." Bullets whiz by: "Refrigerator mother" "A good smack is all HE needs to straighten up." Your adrenaline races as the clock ticks away your child's chances for "recovery."

You sure as heck didn't sign up for this and want out NOW! God has overestimated your abilities. Unfortunately, there is no one to send your resignation to. You've done everything right in your life...well you tried...well, you weren't caught too often.

Hey! You've never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She'll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out (early intervention) they drop you into a larger, more complex one (school).

Never to be out done, there is always the medical intervention maze. That one is almost never completed.There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some of the greatest folks in the world are doing the same maze you are, maybe on another level but a special ed maze just the same.

Tapping into those folks is a great lifeline to help you get through the day. This really sucks but hey, there are still good times to be had.

WARNING! You do develop an odd sense of humor.

Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You're excluded from activities and functions because of your child, and you cry. Your other children are embarrassed to be around your disabled child, and you sigh. Your insurance company refuses to provide therapies for "chronic, lifelong conditions" and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen.

You're exhausted because your child doesn't sleep.

And yet, hope springs eternal. Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls; they'll understand -- they are living through similar times. For those people you will be forever grateful.

Don't get me wrong; this is war and it's awful. There are no discharges and when you are gone someone else will have to fight in your place. But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share an odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again -- but hey, what fun is normal?

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I am now going to log off and enjoy some snuggling time with my love. He got a yellow face today, we had a good day, we have a great weekend planned and I am going to try to forget all the responsibilities and just enjoy my time with him.

There is always next week!

Love you all - Em

3 comments:

Anonymous said...

Hoping you have a great weekend!

Margie

Anonymous said...

As Griff would sign...eye...chest hug...pointed finger at you.
Nonna

Becky said...

All I can say is we love you guys and you are both saints. If you need anything you know you can call anytime.
Love, Becky