Autism Night Before Christmas by Cindy Waeltermann

Autism Night Before Christmas
by Cindy Waeltermann

Twas the Night Before Christmas
And all through the house
......The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract
The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head
Did I get the right gift
The right color And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don't understand
The pleasure he gets
Just from flapping his hands.
"He needs discipline," they say
"Just a well-needed smack,
You must learn to parent"
And on goes the attack
We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it's like
To live with the spectrum
The struggles and triumphs
Achievements, regressions
But what they don't know
...And what they don't see
Is the joy that we feel
Over simplicity
He said "hello"
He ate something green!
He told his first lie!
He did not cause a scene!
He peed on the potty
Who cares if he's ten,
He stopped saying the same thing
Again and again!

Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with autism
Make the tiniest stride
We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,
But what they don't know
Nor sometimes do we
Is that children with autism
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings
Children with autism
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky
So to those who don't get it
Or can't get a clue
Take a walk in my shoes
And I'll assure you
That even 10 minutes
Into the walk
You'll look at me
With respect, even shock.

You will realize
What it is I go through
And the next time you judge
I can assure you
That you won't say a thing
You'll be quiet and learn,
Like the years that I did
When the tables were turned

Thank you Santa

Christmas was good to us this year. Lex and I got to enjoy some quality time with our family at my mom's house. Lex was spoiled rotten, he got a lot of new toys and some clothes. I was equally spoiled since Lex did better than he has since infancy at the family parties, tantrums were limited, he was funny and playful, even though he was obviously exhausted today. I was so proud of my little boy.

I think his favorite gift came from my parents. Lex has been really into Toy Story lately, I frequently get requests to watch "Buzz", so I had planned to get him a Buzz Lightyear but by time I could afford to get it for him I couldn't find the one I wanted to get him so instead he got Woody. He absolutely loves his Woody doll but last night his dreams came true. After I posted on facebook the night before that I couldn't find Buzz my dad made it his personal mission to find Buzz and he did. Lex was very excited when he opened that gift. He has been carrying Buzz and Woody everywhere. I even got an adorable picture of him sleeping with Woody.

Merry Christmas from Lex!

He amazes me

Today Lex went to my best friend's house for the day so I could work and admittedly I was worried it wasn't going to be a good day. He has been there a couple of times for birthday parties and he knows her kids from other things we've done together but I have always been there when he is. He took off like a shot into the house, obviously a good sign. I sent her a text at lunch time just to see how things were going and she said he was the best kid of the three (she has a 3 and 5 year old boys) Unless she was looking for Lex he was playing quietly all day and he was giving her kisses and hugs, huge change from the high five he barely gave her before. I was amazed he did so well out of his comfort zone. I still can't believe how lucky I am when it comes to Lex.

After work tomorrow we will begin our Christmas celebration, he and I will make one final stop and then once he's in bed I'll put up his train set under the Christmas tree so he can see if first thing in the morning Christmas Eve. Santa will be making a special appearance at my mom's house that evening, I just hope Lex will let my cousin's kids see him before he takes over. Saturday is another Christmas party at my mom's house. Sunday will be spent playing with all the new toys and washing all the new clothes. and gearing up for Lex's trip to Nate's. I'm sure Lexy will do fine though the whole thing. He's become so adaptive lately.

Tomorrow

Tomorrow this all becomes real. I don't see the goal as being the "easy" but it's a goal. I'm meeting with a lawyer to go over the divorce paperwork and hopefully start the ball rolling on getting what I need to take care of Lex. Nate has been out of the house for almost 2 months and has been helping where he can but tomorrow signifies my desire to make it just me, even if I'm having some doubts about that. They are purely idiotic doubts, things so ridiculous they shouldn't be slipping into my mind but they are. To me tomorrow is sealing off of a connection that I've had for so long. It's the end of Lex having a full blooded sibling. It's the end of a relationship that was based on love. I know I'm just meeting with the lawyer, we aren't signing the final papers but this one step scares the crap out of me. I know Nate and I can't coexist but what about Lex?

Saturday Night Song of the Week

One of Lex's favorite movies is Madagascar 2 and while this video is from the first movie every time I hear this song it makes me think of him.

On a side note he actually did a full pee in the toilet tonight! I'm so excited for him!

What drives you?

Everyone everywhere has something that keeps them waking up and moving forward. For me it's Lex. Don't get me wrong I would still have a life if Lex wasn't here but it would be a very different life, one I can't even begin to imagine.

Every day with Lex is it's own adventure, not because he has special needs but because he's a headstrong, rough and tumble 3 year old. Some days the adventure is extremely trying, we both end up in tears and can't begin to look for the sunshine through the clouds and then there are days where I can't imagine that he was never a part of my daily life. Today was definitely the latter.

He has been making some small strides in speech the last few days repeating "yellow" (yell-ew) and "joker" (jo-cur) shortly after I told him what color his car was and the name of the Batman character he brought me. Last night he started saying "please" (peas) while signing it to ask for things.

Today he didn't say please as much but we had another small success, he asked me to bring him to the bathroom (grabbed my hand and pulled me that way) after handing me a pull up. I helped him get situated so he could sit on the toilet and gave him his potty book. A few seconds later I heard a few drops hit the toilet water, he did it! Now up to this point Lex had been iffy on his willingness to sit on the toilet for me, he'd do it only if I encouraged him and brought him in and sat with him.

I think we may be rounding a corner with him when it comes to self help skills and speech, a very exciting thing for me (and him).

Even on days that aren't like today I live to take care of this little boy. I do as much research about autism and sensory integration disorder as my free time allows (to steal Jenny McCarthy's  idea I would definitely have a graduate degree in Google research) so I can have a glimmer of an idea to what life holds for him, a glimmer of what he could be seeing or experiencing in any given day.

I love sitting in his bedroom and playing with his cars and blocks and whatever he's interested in at the moment even if he's not into playing with me. I live to hear every attempt at speech, see every new skill and celebrate every new success.

Things that don't come easy are worth the effort, the frustration is worth it, even the tears and temper tantrums are worth it. Those things give me a better idea of who Lex is, what matters to him and tells me just how important everything I do with him really is.

Sure there are days where I would kill for him to be like other kids his age, talking, able to understand that I'm not just saying no but explaining why he can't stick the knife in the outlet.

But in the end Lex is Lex, a kid with autism and sensory integration disorder, a volatile temper (just like his mom), a strong desire to do what he wants, big beautiful blue eyes and an amazing sense of humor (and awesome laugh to go with it).

Lex is the child I never thought I'd have.

For good or bad he will always be my miracle.

Saturday Night Song of the Week

One of my best friends is starting a journey into the unknown in the next few weeks. She's moving out of our town and down to Green Bay. I'm very happy for her, I think this will be the start of many good things for her. P!nk has always reminded me of her and this song definitely does.

Saturday Night Song of the Week

It's another 2 for the price of one! I'm addicted to Glee and I couldn't choose just one of these videos. "Somewhere Over the Rainbow" is really special to me. When I was in the orchestra in high school this was the song our conductor chose as our specialty. I've also sang it to Lex at least once weekly since he was born. When he gets married it's the song I want to dance with him to.



I just love this song! I remember seeing Rocky Horror Picture Show for the first time in high school and then doing the "Time Warp" for the dance portion of my drama class it was a lot of fun.

Thankful

I know it's the time of year when everyone is posting about what they are thankful for and while I normally try to post this throughout the year I figured I'd join the masses and post now.

I am thankful for
-Lex. He's an amazing, frustrating, funny, beautiful and stubborn boy. I spend every day trying to teach him new words and how to communicate his wants and needs with we and he spends those days teaching me how to be more patient. He teaches me how to loosen up and enjoy the day every day. Some days I don't feel like we are meshing, I'm not getting his signals and he's not getting mine but on the days we do it's magic. He'll talk up a storm and I understand his "words" and their meanings, he'll guide me around the house to help him do things. These are all massive strides from a year ago when he wanted to do everything by himself and he wouldn't say much. I just want to see him growing  and expanding as a person.
-My parents. Mom and Dad are wonderful. When we had car trouble earlier in the year Mom came to the rescue. If there's ever a time I can't go get Lex from daycare one of them will go get him for me and entertain him until I can get to their house. They spoil Lex like there is no tomorrow. They always have mini marshmallows for a snack, the layout of their furniture makes a great track and they have the best bed for jumping on. Nana and Papa's house is Lex's favorite place, he loves being home with me but when we get dressed to run errands on the weekend he races to the door yelling "Nanananananana!" So I know he wants to go visit. I'm thankful that these two people that I know love me so much were willing to let me make my own mistakes and are always there to help me get back up when I fall.
-Nate. After being married to someone for 7 years a separation and pending divorce is difficult and he is trying to work with me to have this be as amicable as possible. I know in my heart of hearts I still love him but just not in the same way I once did. I'm thankful for him being there through our whole ordeal of trying to get pregnant, our loss and subsequent amazement of our pregnancy with Lex. He was good at helping while I was pregnant, trying to princess me even though I'd rather keep trucking along. I'm thankful he was so "afraid" of me to go to the nurses station to advocate for me while I was in labor. I'm thankful for him being here when Lex's tympanoplasty tubes were placed, for the sedated hearing test (and getting extra jammies after Lex threw up waking up from sedation) and for sitting by my side when Lex was diagnosed with autism. I'm thankful he handled most of Lex's occupational therapy sessions while I worked and then started the brushing protocol before I could. I'm thankful that even at the end of our relationship we can act like adults and still care about the amazing child we have together.
-My brothers and their loved ones. Karl started the year in Afghanistan and came home safely. He came back a grown up, I was used to my little brother being more teen like and goofy but he's getting his life together and I love being able to watch that change since he's only a block down the street from me. It's nice knowing he's nearby but not so close that we are within bickering  range. I have yet to meet Chelsea his girlfriend but some day. Ollie is an amazing little boy and so funny. I hope to have him and Lex get together to play soon. Matt has been in Missouri working hard and now playing just hard. His fiance Megan is his perfect match they even smile upside down. I'm thankful Matt has found his match in her she's a perfect fit into our family. I'm really thankful for my nephew that Megan is still baking. I love babies! And Samuel is going to be one loved baby!
-My friends Chelli, Penny, Shawne, Kathy, Sally,Tami, Mark and Beth at work. They make the day fly by. We spend so much time laughing and pulling pranks on each other. This is the first job I feel like I'm a member of a team instead of a body filling a position. I love hanging out with these ladies outside of work and their adorable kids.
-My friends Crystal, Krystal, Stephanie and Dustin. Some of you are actually related to me and some of you I wish were, you know who you are. I'm thankful of all the love and support you give when all you really have is a hug from miles away. I'm so proud of you guys for everything you've done in the last year and the things that will come in the new year. Keep your chins up and let me know if you need anything.
-Pam, Lex's daycare teacher. After the problems we had with New Horizons this year Pam has been a miracle. She just seems to "know" what to do when it comes to Lex and some of his difficulties. I almost never get a bad report on his behavior there. The kids there are wonderful too. Yesterday when I dropped Lex off the kids asked if he had school and then were very sad to find out that he did. They wanted to play with their new friend Lex and he wanted to play with them.
-Carol, Lex's special education teacher. Carol is wonderful with Lex. She admitted she didn't really know what to do with him for the first days because he was so difficult to handle. She makes it a point to communicate with me at least once a week and she tries to find the good even when she has bad to tell me about. At his conferences she was proud of the strides he has made and even commented on how she wished the other kids were as good at eating as Lex is.Yesterday's note brings a smile to my face. "AMAZING Day!" Lex was very involved and participated . He did 2 obstacle courses with NO protest and independently did 1-2 more. Then he went to the table to play with playdoh and a peer joined him and they played for 10-15 minutes!" This is really big for Lex and I like to thank Carol for letting me know how he's expanding there and using my ideas when she thinks they'll work for him without interrupting his class
-Douglas County Birth to 3. Most specifically Paula and David, The time we spent working on techniques we learned in occupational and speech services is priceless. Lex had such a good relationship with each of them and I know he enjoyed playing with them while learning. It was hard moving away from their services but Lex is nothing but better for having them.
- Nate's family. They have let me know that I'm still a part of the family even with what's going on with me and Nate. I can't wait to see my eldest niece get married this fall, she'll be a gorgeous bride.I'm glad they were willing to give him a place to live when he moved out and a place for Lex to have fun on his weekends with them.
-Pumpkin, Ozzy and Alice (Bella and Eva). Our kitties are a source of frustration some days ("What do you mean you couldn't throw up in the box... why in my shoes?") but they are a huge source of relaxation for me. It's nice to have a warm body snuggled in my lap while watching movies or taking a nap. It's a load of fun watching them play with whatever "toy" falls on the floor and how easily a shadow can startle them. While Bella and Eva no longer live with me(Bella went to the shelter and was adopted almost instantly, Eva went with Nate) I'm thankful that I got to have the time to get to know them.
-My own learning and strength. This year has been a journey, it's been a long twisty ride and I've come out stronger and smarter for it. I know I'm going to have my down points but if I keep smiling I can manage anything and if I can't handle it myself I have wonderful people that will be here to help me.