Wednesday, April 28, 2010

What I Want...

Individualized Education Plans, or IEP's, are an annual rite of passage in my house. These documents set goals and implement modifications for children who have special needs each school year so that they can be successful. These meeting can be stressful, especially when you are requesting more services or making sure your child has an assistant to help them through the day. We are fortunate enough to have TWO of these meetings every year.

Since Emma was diagnosed in 1999, and Hayley in 2000, I estimate that we have had approximately 22 of these meetings. (I honestly think it is more, because when they were very young we met a couple times to have "addendum's" added to their plans - but that is still a meeting in my book.) At first I saved every single scrap of paper - advice from several sources told me to keep a thorough paper trail - until finally I had a drawer committed to all these IEP's, all the testing information, all the "Parent's Rights" guides, and all the notes taken during these meetings. In essence, I had created a fire trap.

It took me a little while, but I finally purged the drawer. What brought about the change of mind was not so much the fact that I was afraid of the tinder box in the buffet drawer, but that the information pretty much stayed the same. And to be completely honest, I knew if I needed to get information, the school would have the current stuff that I really needed. I am lucky if I can find their current IEP.

Except for two of these meetings, the IEP's for the girls go pretty smoothly. (Those two meetings are for another blog...) I know what to expect - like I said, the information stays the same. And after all of these meetings you would think that nothing would ever throw me. Yeah, I forget about this part every single time.

Every time we have one of these meetings, we are always asked the same question - What do you want for your child?

Immediately I get nervous and try to remember what I said last year. (The OCD part of my brain is sticking its tongue out at me as if to say, "Told you not to throw those papers away. Told you to file them neatly in pretty little files labeled by year!") It comes to me a little quicker each time - the same lame answer I always end up giving - "I want (Emma/Hayley) to be able to function in society." (Something very similar to that - I can't find their IEP's right now to check.) Neat and all encompassing - the perfect answer to the ultimate question.

Don't laugh, but at those first couple of meetings when they asked me that question, I really thought that if I didn't answer it right that they were going to label me a bad parent. I even started to ask what I had said the previous year. I was so afraid of doing something wrong. Still am...

But now, RIGHT NOW, I wish that I could answer that question - because I truly know what I want for my girls.

I want them to be able to brush their hair and teeth without me having to remind them.

I want them to be able to make change and tell time.

I want them to be able to walk somewhere and never worry that people are staring at them when their quirks begin to show.

I want them to show interest in things that their peers show interest in.

I want them to be able to live on their own.

I want them to be happy with who they are and what they have accomplished in this world.

I want them to be able to experience life without having someone watching over them.

I want them to fall in love.

I know that some of these things are unrealistic for an education plan. But that is what I want for them. Am I asking too much? Probably.

There is no "right" answer to that question. And if you were to ask me tomorrow I am sure some of those answers would change. When I answer that question what I am doing is really asking for reassurance. I say that I want them to be able to function, or fit-in with society, and the experts are going to give them goals that will make that happen. Because with all of these goals and modifications, my girls will be able to do all the things I listed above, right? That is what I am asking for within my own answer. Reassurance and comfort that everything will be okay.

That is what I want for my girls. And for me.

Sunday, April 25, 2010

Speaking the Truth

A young lady I met in college once said this about my girls - "It is like they are drunk. They just say whatever comes to mind, but they are honest. I wish I could be like that."

There are times I wish I could be like them, too. How much easier would it be to just blurt out exactly what you think? When asked to work on a committee that you don't want to be on you could say, "No thank you. I don't want to help. That is too much work."

Just recently, Hayley was in her Drama class and her teacher was talking about Shakespeare, I think, and apparently Hayley was not impressed. She raised her hand and said, "Can we be finished with this now?" The teacher told her that she would be done in a few minutes. Well, a few minutes later Hayley raised her hand to let the teacher know that it was a few minutes later. Thank goodness her Drama teacher is someone I know, and when she called to share this story with me she was laughing about it. I was groaning...

This brought back a memory of when Emma was "truthful" - one that still makes me cringe when I think of it.

Several years ago I was concerned about something medical, not autistic, with Emma. Because of this concern we ended up going to have a genetic screening done. We were up at Vanderbilt, maneuvering through the maze of hallways and elevators, when we finally reached the right place. As we headed down the hallway there were several benches, and that was where the woman sat. (The thought quickly crossed my mind that Emma might ask a question or make some comment to me or her dad, but it quickly sped on out of there. GREAT! Always head a warning - even if it is fleeting - even if you think that you are being ridiculous.)

The woman was a very obese African-American woman. If I had to guess, I would say that she was at least 400+ pounds. I can't remember what she was wearing, just that she had a colorful bandana on her head. Around this time my brain should have been screaming at me - "DANGER! DANGER! Turn around! RIGHT NOW! You KNOW that this is not going to be good! Turn BACK!"

Nope. We kept on walking...

And Emma walked right up to her. (Now the brain started freaking out - sweaty palms ensued, heart rate shot right up...) Emma put her hand on her arm and said, "You are the most biggest beautifulist black woman I have ever seen."

I wished that I had the power of invisibility at that moment.

My brain went into "fight or flight"mode and I did what any candidate for Mother-of-the-Year would do - I did the "scoop" (where you place your hands on your child's shoulders and quickly steer them in the opposite direction), mumbled "Excuse me" and booked it down the hallway.

I should have stayed and explained. (To be truthful I was at that point in my life where I was tired of explaining.) But where to start? I can hear the conversation now...

"I am so sorry that my daughter just said what she did, but she really didn't meant to hurt your feelings. She's autistic and tends to just say what she feels. I mean, you are black, and she would have used the term African-American if she could clearly speak it. And you are big, quite possibly you are the biggest woman she has ever seen. But she wasn't making fun of your size - I swear it..."

At what point would she have punched me right in the mouth?


To this day I hope that the only word she heard was "beautifulist" - because to Emma she was just that. All the other words described physical characteristics only. Beautiful describes a person inside and out. Imagine if I had tried to explain it - how much worse I could have made it. Her sentence was pure honesty, my explanation would have been my interpretation. So even though Emma used all those other words to get her point across, her use of "beautifulist" almost negates the rest of the statement. (Kinda like a Diet Coke canceling out the calories in a donut.)

Now, can you imagine what will come out of their mouths when they are old enough to drink? Oh boy...

Wednesday, April 21, 2010

Flush to the Future

Isn't it funny how something so routine will bring back a memory out of nowhere? Mine happened today when I was using the bathroom at Panera Bread. (Nothing gross - I promise!)

I started the morning with a migraine, and my first line of defense is coffee - LOTS OF IT! Guess what happens when you guzzle coffee like a thirsty man left alone in the desert for a week? Yep. I had to go. I became very familiar with Panera's bathroom - which is very clean, by the way - and their wonderful use of technology. That's right - automatic flushing toilets! It was on my third visit that it hit me - the automatic flushing toilets - I mean. Rewind my life about 6 years or so...

Both of my girls went through a phase when even the thought of an automatic flushing toilet made them want to opt to wet their pants rather than use the facilities. I remember begging and pleading with them, bribing them, placing my hand in front of the sensor (not on it - ewwwwww...) while trying to hold them over the potty, and plain out threatening that if they didn't use the bathroom they were going to be in big trouble.

But we still had tears - lots of them. Going to the bathroom in public could turn into a nightmare if we went to the "right" store, restaurant, etc... I always dreaded it more if there were other people in there. I am sure that they thought we had all just lost our marbles - my pleading, their crying...

Now I know that many children have had a fear of using those wonderful pieces of porcelain technology. Heck, I know several adults who have confided in me that they get a little weirded out by them, too. But my girls were between 5 and 6 years-old at the time. And they were tall 5 and 6 year-olds. Now add that their speech wasn't always clear as these meltdowns were happening. Such good times!

One day it just ended. I remember it so well. We were eating at the local McDonald's, and the girls went to use the bathroom. The reason I remember it so well was because we were sitting right near the restrooms, so I let them go in by themselves. A few minutes later they came out and made an announcement. To us and all the other patrons eating at McDonald's that day. (And there were quite a few from what I recall...)

"Guess what?! We used the potty and we weren't scared at all!"

Not in a quiet voice. Tall 5 and 6 year-olds. Well past the potty-training phase. All I could do was smile and say that was great.

And it is great. Can you imagine having to deal with that issue today? With 12 and 13 year-old girls. Tall 12 and 13 year-old girls. We are beyond fortunate, because I know some people might be dealing with this exact issue. My heart goes out to those people, because I remember the embarrassment and the frustration.

As I continue this walk down memory lane, I recognize that we have been blessed. Blessed with two unique, loving girls. Blessed with people in our lives who love them like they are their own. And blessed with something that has kept us going since September 21, 1999 - a sense of humor.

So the next time you are presented with an automatic flushing toilet, and you use it without being afraid, I want you to own it. Open that restroom door and proudly proclaim that you have used the potty, and you weren't scared at all!

Sunday, April 18, 2010

Tons of Things

Yesterday was a great day - one of those days that I will remember for a long time. Nothing major happened, no earth shattering moments... We went to the drive-in as a family and had a really, really good time.

Everyone got along - no fighting, no name-calling, no sulking - and dare I say it, everyone LIKED each other. Not that we don't all love each other, but the bottom line is that we have a 12, 13, and 16 year-old. Sometimes liking each other is much harder than loving each other.

The teen years are just as emotional and painful as when I went through them, and watching my three interact on a daily basis can make my ulcer flare up. The belittling, the name-calling, the rapid emotional mood-swings... Just a barrel full of fun...

But last night was a mini-utopia. There was good-natured teasing, sharing of snacks and stories, and laughter. Lots of laughter. It started with Cameron saying that he had read my last blog entry. I asked if he liked it, and he said yes, but not the part where I talked about him. I asked if I was wrong and he said, "Not really, but still..." I started giving examples of where Cameron had done some of the things I wrote about and that opened up the door to the past for all of us.

We sat there, waiting for the movie to begin, swapping stories from when they were younger. I grabbed a piece of paper to write down some of them to remember for later. The kids kept adding to my list. And the more we remembered, the more we laughed.

It was after we were packed up and heading home when the funniest thing of the night happened. I am not sure how it came about, something about 2-D and 3-D animation that Emma have gotten mixed up, that Cameron said to her, "What is wrong with you?"

Emma replied, "I don't know. Tons of things!"

We all fell apart. (I am honestly amazed that I was able to continue driving.) We decided right then and there that this was a phrase worth keeping.

It wasn't until this morning that I realized how fabulously truthful her answer was. Every single one of us has tons of things that are wrong with us. If I were to start my list right now it would look like this:
1. Overweight
2. Bite my nails
3. Hate cleaning - anything
4. Prefer opening a can of something to microwave rather than cook from scratch
5. Use way too many inappropriate words when I am upset
6. Cry at the drop of a hat
7. Think that "The Goonies" was one of the best movies ever made

I could go on and on... But couldn't we all? I think that accepting we are flawed makes life a little easier to muddle through on a daily basis. And the good news - We all have tons of things that are "right" with us too! However, what do we tend to get a giggle out of...

Alright - let's be honest here - it is the "wrong" things that give us the greatest laughs. Isn't laughter good for us? Isn't being able to laugh at ourself a fabulous trait? Just think how miserable we would all be if we didn't laugh when we made a mistake.

Thanks, Emma! Even though you feel like you have "tons of things" wrong with you, last night you were so very right!

Saturday, April 17, 2010

Tears and Laughter

This past week was a busy one - a roller coaster ride full of emotions. Late Sunday night we found out that Will's grandmother, Virginia Randle, had passed away. She was an amazing woman who had the BEST sense of humor. Her health had been deteriorating for a long time, and we knew that the end was coming quickly, but things like this always come as a complete shock and surprise. Dave and I made arrangements to travel to Chattanooga for the viewing and funeral - the easy part - and began prepping Hayley - the not so easy part.

None of my children have ever been to a viewing or funeral, but Cameron and Emma understood immediately those subtle social nuances that Hayley has to be taught. The first lesson was that you DON'T bring balloons to a funeral. The kids and I ran to Kroger on Monday night to pick up some things for the trip, and to get sympathy cards. I stood there and looked through a couple until I found just the right ones, and as I placed them in the cart Hayley asked if we should pick up a balloon, too. Well, Cameron just came unglued - "No! You don't bring balloons! Blah, blah, blah, blah...."

(Editor's Note - Cameron is not on the spectrum, but that doesn't mean he doesn't show his autism from time to time! My son has a tendency to spout verbal diarrhea, embellished with his large vocabulary, at his sisters, friends, other family members.... Nine times out of ten, everything he says to them goes right over their heads. Articulate, yes. Age-appropriate, no. I remember well the day that he had just spewed something off to his friends (they were around 11 at the time) and one of them told him that kids just don't talk like that. But I digress...)

I quickly placed my hand over his mouth and told him to relax. I then explained to Hayley that people don't bring balloons to funerals. Good enough answer for her - she went on her merry way. I pulled Cameron back a bit and explained to him that this was all new territory for Hayley, and to be patient. (He tends to forget that she is on the autism spectrum. I SWEAR, we have to have a talk about every four months or so to remind him that his sisters are autistic. Just reinforces the fact that he should be right there on the spectrum with them.)

We get down to the viewing on Tuesday night with little to no drama - and right before we go into the funeral parlor, I pull Hayley aside and go over the "How to's" of talking and acting at a viewing/funeral. Then we headed in.

Viewings and funerals are emotionally rough as it is, but I had added tension because I never quite know what one of my girls is going to say or do. I am sure that parents with "normal" children go through some of that too - some things are universal - however, my kiddos tend to push the envelope.

Everything was going smoothly. (Well, as smoothly as things can at a viewing...) I started to relax a bit. Hayley was saying the right things, acting the right way, so my guard started coming down. After we had been there for a bit, Hayley came over to where Dave and I were talking to Will. She looked at Will and said, "Mr. Will, I am so sorry that your grandmother died," and she hugged him.

Okay - Inside I am doing the victory dance. I did it! Hayley did it! I am getting better at this autism thing. Then she stopped hugging him...

As she pulled away, her face lights up, and she says, "And the good news is, YOU GET TO RIDE IN A LIMO TOMORROW!" Those were just the words, let me add the hand motions - both arms straight out, with her index fingers pointing at Will, until she gets to the word limo - then she did spirit fingers up in the air.

I deflated... Will laughed. Inwardly, I am groaning. Heck, outwardly I am groaning. EPIC FAIL - to quote my son.

Yes - it was funny. Actually, it gets funnier every day. But at that moment... UGGGHHHHH! Embarrassment doesn't even begin to describe it! Will shared it with his whole family, and they thought it was hysterical. I have shared it with my friends, because, honestly, it IS hysterical. When one of these moments occur I tend to forget that when Hayley says things like this, it is not done to be funny or inappropriate, she is being utterly truthful.

Riding in a limo is something Hayley REALLY wants to do. She asked - more like pleaded - to ride with the Miller family to the cemetery. She was excited for them because riding in a limo is something to be excited about. Call it making lemonade out of lemons, or looking for the silver lining, Hayley has a way of finding the positive when she is surrounded by negative. And she has the ability to make people laugh when they need it the most. So, Hayley has changed my perspective. Again.

When the time comes for my funeral, I want balloons. Lots of them.

And I want everyone to ride in a limo.

Thursday, April 8, 2010

Becoming a Slug!

Spring Break! I made grand plans for this week - cleaning, organizing, running much overdue errands, and most importantly, some relaxation. Give you one guess which one I have accomplished so far...

The couch, computer, and remote have been my best buds this week. I have not strayed far from them. And why would I? The couch is comfy, the computer keeps me connected to my loved ones, and the remote has helped keep me up to date on the going-ons in the world. Don't get me wrong, the computer has helped with that, too, but I am a serious Headline News Junkie. There is something reassuring about hearing the same couple of stories repeated over and over again. (Consider it white noise - great to nap to!) I have become a slug! So all is good in my world, right? Wrong.

That dirty little five letter word crept into my consciousness this morning. Starts with a G and ends in a T... G-U-I-L-T. How could a word that has "u" and "i" in it make you feel so bad? (Cheesy - I know...) But, there it was, staring me dead in the face with its hands on its hips and a scowl on its face. I closed my eyes, hoping that it would go away after I took my mid-morning nap, but that GUILT is tenacious! It was still sitting there when I woke up, and I swear it started tapping its foot at me.

I tried to bargain with it - Just one more day then I will get on my "To Do" list. If I do the dishes can I go back on the couch for a while? I made coffee this morning - surely that counts for something... Didn't work. So I did what any adult does in a situation like this - I whined and threw a tantrum - Everybody else is doing it! I deserve this! I need this! And, my personal favorite - You can't make me stop doing it - you aren't the boss of me!

Actually, many times GUILT can be the boss of me, but not this week. The things that I had planned will not effect anyone else but me if it doesn't get done right away. That is what is really important - my actions are not effecting anyone else. Now, will I be running around for the next two days catching up - You betcha! But I will not feel the stress that normally comes with it because I took some "Me" time. I feel like I could tackle the world! (Catching up on your sleep will do amazing things to your outlook on life!)

And I guess that what I have learned this week - prioritize your GUILT instead of letting GUILT become your priority. Hey - I'm not such a slug! All that time on the couch helped me learn something - Go ME!

Time for my mid-afternoon nap...

Wednesday, April 7, 2010

The Greatest Day of My Life...

When you ask someone to tell you about the greatest day of their life you will usually get one of these answers: birth of a child, day they got married, watching their child graduate, etc... Now, ask my youngest child that same question and these are some of the answers that you will get: release of the newest Pokemon game, her birthday, riding a different bus home from school, getting a digital copy of a movie placed on her iPod, etc...

My daughter, Hayley, is on the autism spectrum. How she views the world is very different from "the collective norm" - and that poses a whole basket full of issues that we deal with on an almost daily basis. When the opportunity presents itself, my husband and I try very hard to explain to her why things are done or said a certain way, so that she won't stick out in a crowd.

Hayley has "the greatest day of her life" days on a regular basis. One day, after another one of these moments had come, I decided to share with her what people "normally" mean when they say that phrase. She listened to what I had to say, said okay, and went on her merry way. (I am pretty sure that she did not hear one word that I said because this was the greatest day of her life - the newest Pokemon game was coming out...)

After she left, I got to thinking - Who was I to tell her what "the greatest day of her life" has to be about? There are no steadfast rules of what the greatest day has to be? Heck - there is not even a limit on how many someone can have, is there?

Instead of looking at her not fitting in with "the collective norm," I should have been looking at what a gift she has been given. My daughter truly appreciates all those moments in life that make her feel wonderful. She is a genuinely happy child. How many of us can say that we are happy with all the small things that come our way? I can truthfully say, not me... And that is sad.

My goal is to have the greatest day of my life every day. What made today the greatest day of my life is that my youngest daughter gave me the most beautiful gift - the gift of appreciation for all the small things that make life wonderful.