Sunday, May 31, 2009

zoo trip

We went to the zoo today. We spent a lot of time in the petting zoo section. Shannon ran around yelling "Doggy, come here doggy". At one poin, she laid her head on the goats back and smile at Bob and said "best friends". She is definetely my animal lover.

Saturday, May 30, 2009

I'm nervous

It's almost June, that means it's almost June 11th which means it's almost Lauren's neurologist appontment. I've been pushing it out of my head for the last month but it creeps closer and closer and closer.

I'm afraid I will leave once again with no direction, no step closer to where she is, and what is wrong. However, I'm equally as afraid that I will leave with an answer. An answer that maybe I'm not sure I want.

I go through stages depending on the moment and the second of the day. In one moment, the doctor can announce she has X (not Autism) and I can leave knowing for once what is wrong with this kid. I can go on to tell my insurance company where to shove Lauren's supposed Learning Disorder and they can start whipping out the funds to pay for her neurolgist appontments.

In another stage, maybe the doctor announces she has Q. Q allows children to develop normally until age 10 and then we'll see dramatic loss of skills, loss of speech, etc. I'm not ready for this.

And maybe, just maybe the doctor will say "her genetic profile is abnormal, but we still don't know what she has. No one has something like this. (this is what I secretly believe). Maybe eventually we'll find out but technology is not there yet. I'd say that they'd name it after Lauren but they never name it after the patient, it's always named after the doctor.

Maybe this is why I've concentrated on posting poems that other people have written. If I focus on other people's issues, I don't have to worry about my own. I wish I could sum up Lauren in a few paragraphs but I can't.

However, if there is one thing that Lauren does well. And there are many things that Lauren does well. Lauren lives in the moment. She focuses on the then and know. She is blissfully unaware of her limitations. So for the next twelve days, I'm going to try that out. I'm going to live with Lauren, in the moment.

Friday, May 29, 2009

Mothers Lie

I have always liked this one. Thanks Joy. I promise I will be back soon--- with original thoughts.

By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.
She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).
Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.
She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.
Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.
The doctor's words took your breath away.
It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.
It didn't seem possible.
That didn't run in your family.
Could this really be happening in your lifetime?

There's no such thing as a perfect body.
Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.
Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.
How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clich├ęs and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.
I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.
You snap, you bark, you bite.
You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,"Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you.
From where I sit, you're way ahead of the pack.
You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.
You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability.
You're a neighbor, a friend, a woman I pass at church and my sister-in-law.
You're a wonder.

Lori Borgman is a syndicated columnist and author. Web reference unavailable. (Thanks to Andera K. on the EOHarm discussion list

Welcome to Holland

Now that I've welcome everyone to several countries, I'd figured I'd post the original. To me it has, and always been, very, very hoky and way too simplistic. They seemed to get a guidebook to their disability. When I showed up in this strange country, I must have walked past the person giving out the guidebooks. Also, the rest of the world knows they went to Holland. They don't expect them to live like they went to Italy. I believe this was written about a chlld with Down Syndrome. Such is one of the many differences between a child with an obvious disability versus a hidden disability.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Last Daisy Meeting of the Year!

Our last Daisy meeting of the year was last night. We sang songs and played games.

The next meeting we have will be with 1st graders who eat lunch at school and are at school all day long. They think they are quite grown up to do that.

Thursday, May 28, 2009

There is no Handbook

When I had Lauren, I left the hospital with a 7lb15oz baby, a handbook on breastfeeding, a handbook on basic (very basic babycare), and normal typical one year development. The handbooks didn't do much. They gave me some basic ideas and numbers to call in dire emergencies. However, for the most part when you bring home your first bundler of joy, you are completely on your own.

There is no section in the book on what to do when your baby screams 15 hours a day for no apparent reqason. There is no section for what to do when your baby spits up and refuses to eat. There is no section on what to do if your baby who has screamed 15 hours a day, suddenly stops and spends the day looking at you with glazed over eyes.

If there is no handbook for typically devloping children, there is definetely not a handbook for special needs. We desperately need one.

We need a section on navigating the school district. What is IEP, MFE, EYS, and IDEA? How can I advocate for my child but not irritate everyone so they go out of there way to avoid me and Not want to help my child.

Where do I begin? Do I take her to neuroglogist? a psychiatrist? a developmental peditrician? How about a genetic counselor? This could eventually move on to the do they need drugs or do I need drugs?

Insurance mysteries: Are they set on denying her just cause? Why can't anything be a covered charge? If I run out of wrapping paper, can I just use an EOB?

Navigating special services: This is a hot one for me. I work for angency whose entire goal is to help people with disabilities yet I feel no one will help her.

How to do deal with other people in public? Should I just hand out cards? Do I really have to hear about your sister's neighbor's cousin that had a little boy who is just like that? Do I have to explain to everyone that she's not retarded? In fact can we just ban the word retarded, unless used in a clinical sense (which 99.9% of the population will never use it in that way)?

How to live for the moment but plan for tomorrw. How do I shut my brain off when I start thinking about what the future will hold? Why didn't I take her to EI when she was 2? Maybe my MIL's right and the meds are harming her?

Will someone please write a handbook on raising a special needs child? I would but I'm too busy raising a special needs child.

Tuesday, May 26, 2009

Happy 4th Birthday Ellie!

Ellie is 4 years old today (doesn't it sound old). She had a great year. She went to school for the first time. She absolutely adored her teachers (Miss Holly and Miss Carrie could do no wrong).

She learned to write her name. She is still learning how to share. Ellie is a great big sister. She has unending patience with Shannon. She is Shannon's hero and Shannon just adores her. She's not the greatest little sister and loves to call Lauren "a bum bum baby) among other things.

She is quite the lady. I often think that the author of Fancy Nancy captured the essence of my Ellie.

She was our first step into normal parenting. We have been so much more relaxed with Ellie. We were never in a hurry to see her do anything; we were simply thankful that she did it.

I'm sure Ellie's 4th year will be just as busy as all the other ones.


Ellie's cake


Ellie waiting to blow out her candles


Presents? For me? You shouldn't have!



It was a very Tinker Belle birthday!

Monday, May 25, 2009

Memorial Day Girls


One day I promise I will stop dressing them like this but for now they are so cute!

Friday, May 22, 2009

Last day of school for Ellie

I think that I must have just posted on how it was Ellie's first day of school. However, school has come to an end. It will be quite an adjustment for Ellie. She's waited her entire life to go to school and now it is over.

We did go to her preschool picnic today. Ellie introduced me (again) to her beloved Miss Holly and Miss Carrie. We met some friends as well.

Thursday, May 21, 2009

It's almost Ellie's birthday

Ellie wakes up every morning and says "Is it my birthday today?" Her birthday can't come fast enough.

She has an entire list of things she wants: a striped skirt, some new shirts, a kite, and a bike.

Lauren got a bike for her birthday. It's been a long 2 months for Ellie. Bob and Ellie are going tonight to see what size she rides. I'm guessing 12" as Ellie is still a little thing

Wednesday, May 20, 2009

Must have Daddy

Lauren has a stuffed Elephant from Ikea. We found a few mintature ones that match. Her elephant is now a mama to baby twins. I thought the family was complete. However, Lauren decides we must go back to Ikea and get another big elephant to be the daddy. I guess no family, even a family of elephants, is complete without a daddy.

Monday, May 11, 2009

Happy Mother's Day!

We went to an Inn by our house for Mother's day for a brunch.

It was wonderful. We ate until we could eat no more. The girls thought it was a Fancy Nancy place so they acted like lovely ladis.

Bob says we should go ever year. He says he is now looking forward to Mother's Day

Sunday, May 10, 2009

Money

I was driving the girly girls somewhere and Ellie wanted to buy something. We were a few days before payday so I said "We'll have to wait until Friday because I get paid. We don't have the money for it now".

Lauren accepted that but Ellie said "But Daddy has money, we just use his".

I said "but how do you know Daddy has money"

Ellie "I see it all the time"

I guess when you are 4, it's got to be tangible to be real.

Tuesday, May 5, 2009

A special treat

I sometimes bribe (I mean reward, definetely reward) the girls when I leave for work. Ellie, especially, has a difficult time with me leaving. She cries and begs me to stay. I sometimes promise her a special treat. She knows I have vending machines at my work.

Yesterday, she promised me a special treat. I think it was supposed to be M&Ms. However, when I came home from work, she was empty handed. I guess that's what happens when you are three and can't drive to the store to get said special treat.

Saturday, May 2, 2009

Welcome to Beruit

WELCOME TO BEIRUT by Susan F. Rzucidlo

(Beginner's Guide to Autism)

"I am often asked to describe the experience of raising a child with autism-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 than 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 "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 over estimated 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 if 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 life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and 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. You're insurance company refuses to provide therapies for "chronic, life long 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 its 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 and 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.

Friday, May 1, 2009

Welcome To Schmoland

Holland Schmolland
by Laura Kreuger Crawford

If you have a special needs child, which I do, and if you troll the Internet for information, which I have done, you will come across a certain inspirational analogy. It goes like this:

Imagine that you are planning a trip to Italy. You read all the latest travel books, you consult with friends about what to pack, and you develop an elaborate itinerary for your glorious trip. The day arrives.

You board the plane and settle in with your in-flight magazine, dreaming of trattorias, gondola rides, and gelato. However when the plane lands you discover, much to your surprise, you are not in Italy -- you are in Holland. You are greatly dismayed at this abrupt and unexpected change in plans.

You rant and rave to the travel agency, but it does no good. You are stuck. After awhile, you tire of fighting and begin to look at what Holland has to offer. You notice the beautiful tulips, the kindly people in the wooden shoes, the french fries with mayonnaise, and you think, "This isn't exactly what I had planned, but it's not so bad. It's just different."

Having a child with special needs is supposed to be like this -- not any worse than having a typical child -- just different.

When I read this my son was almost 3, completely non-verbal and was hitting me over 100 times a day. While I appreciated the intention of the story, I couldn't help but think, "Are they kidding? We're not in some peaceful country dotted with windmills. We are in a country under siege -- dodging bombs, boarding overloaded helicopters, bribing officials -- all the while thinking, "What happened to our beautiful life?"

That was five years ago.

My son is now 8 and though we have come to accept that he will always have autism, we no longer feel like citizens of a battle-torn nation. With the help of countless dedicated therapists and teachers, biological interventions, and an enormously supportive family, my son has become a fun-loving, affectionate boy with many endearing qualities and skills. In the process we've created . . . well . . . our own country, with its own unique traditions and customs.

It's not a war zone, but it's still not Holland. Let's call it Schmolland. In Schmolland, it's perfectly customary to lick walls, rub cold pieces of metal across your mouth and line up all your toys end-to-end. You can show affection by giving a "pointy chin." A "pointy chin" is when you act like you are going to hug someone and just when you are really close, you jam your chin into the other person's shoulder. For the person giving the "pointy chin" this feels really good, for the receiver, not so much -- but you get used to it.

For citizens of Schmolland, it is quite normal to repeat lines from videos to express emotion. If you are sad, you can look downcast and say, "Oh, Pongo." When mad or anxious, you might shout, "Snow can't stop me!" or "Duchess, kittens, come on!" Sometimes, "And now our feature presentation" says it all.

In Schmolland, there's not a lot to do, so our citizens find amusement wherever they can. Bouncing on the couch for hours, methodically pulling feathers out of down pillows, and laughing hysterically in bed at 4:00 a.m. are all traditional Schmutch pastimes.

The hard part of living in our country is dealing with people from other countries. We try to assimilate ourselves and mimic their customs, but we aren't always successful. It's perfectly understandable that an 8 year-old from Schmolland would steal a train from a toddler at the Thomas the Tank Engine Train Table at Barnes and Noble. But this is clearly not understandable or acceptable in other countries, and so we must drag our 8 year-old out of the store kicking and screaming, all the customers looking on with stark, pitying stares. But we ignore these looks and focus on the exit sign because we are a proud people.

Where we live it is not surprising when an 8 year-old boy reaches for the fleshy part of a woman's upper torso and says, "Do we touch boodoo?" We simply say, "No, we do not touch boodoo," and go on about our business. It's a bit more startling in other countries, however, and can cause all sorts of cross-cultural misunderstandings.

And, though most foreigners can get a drop of water on their pants and still carry on, this is intolerable to certain citizens in Schmolland, who insist that the pants must come off no matter where they are and regardless of whether another pair of pants is present.

Other families who have special needs children are familiar and comforting to us, yet are still separate entities. Together we make up a federation of countries, kind of like Scandinavia. Like a person from Denmark talking to a person from Norway (or in our case, someone from Schmenmark talking to someone from Schmorway.), we share enough similarities in our language and customs to understand each other, but conversations inevitably highlight the diversity of our traditions. "My child eats paper. Yesterday he ate a whole video box." "My daughter only eats four foods, all of them white." "We finally had to lock up the VCR because my child was obsessed with the rewind button." "My son wants to blow on everyone."

There is one thing we all agree on. We are a growing population. Ten years ago, 1 in 10,000 children had autism. Today the rate is approximately 1 in 250. Something is dreadfully wrong. Though the causes of the increase are still being hotly debated, a number of parents and professionals believe genetic predisposition has collided with too many environmental insults -- toxins, chemicals, antibiotics, vaccines -- to create immunological chaos in the nervous system of developing children. One medical journalist speculated these children are the proverbial "canary in the coal mine", here to alert us to the growing dangers in our environment.

While this is certainly not a view shared by all in the autism community, it feels true to me.

I hope that researchers discover the magic bullet we all so desperately crave. And I will never stop investigating new treatments and therapies that might help my son. But more and more my priorities are shifting from what "could be" to "what is." I look around this country my family has created, with all its unique customs, and it feels like home. For us, any time spent "nation building" is time well spent.

-- The End --