Friday, December 31, 2010

From every end comes a beginning

Well we made it to another new year. I hope 2011 brings just as much happiness at 2010 has brought me, maybe a little less sadness and stress, but definitely growth. This year wasn't horrible but I'm ready for 2011.

2010 brought me:
  • A definitive answer that Lex could hear. The sedated test was not enjoyable for either of us but knowing that it wasn't his hearing that was preventing him from speaking was thrilling.
  • A diagnosis of Autism and Sensory Processing Disorder. These labels have allowed my son to obtain the services he's needed, that we've needed, to help him expand his horizons and grow.
  • A 3 year old. Lex celebrated his 3rd birthday in October and I celebrated 3 amazing years of motherhood. While never easy it's always worthwhile.
  • A good friend moved away almost to the year after another friend moved. While sad for me I'm excited that she'll get to experience a whole new beginning in a city she has wanted to move to for a long time now.
  • My younger brother returned safely from Afghanistan. I couldn't watch the news or read papers with any regularity because I would worry too much. It also brought the notification that he, my uncle and my cousin will all be going to Iraq. While this is also nerve wracking they will all be in the same area and our family looks out for each other, I know these 3 will return safely.
  • My baby brother announced that he and his fiancee will be having my first nephew (related by blood) in April. I can't wait to see them in February for the baby shower and then to meet my new nephew.
  • A separation and pending divorce. This has not been an easy thing for me and Lex and most likely for Nate but we are learning how to handle it every day. It's hard when any relationship ends but it'll be for the best in the end.
  • Words. Lex has started saying more words with more regularity. I can't get enough of "Buzz", "Wah-ee", "E-ah" and "pwease". He's trying new words almost daily and he has an absolutely beautiful voice when he's not screaming or squealing. It's the most beautiful sound I know outside of his laugh.
Every year I make resolutions and this year is no exception. I want to continue working on losing this weight I'm carrying with me. I want to get my financial stuff in control. I want to continue doing the absolute best I can for Lex and find us a different apartment.

Sunday, December 26, 2010

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

Saturday, December 25, 2010

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.

Wednesday, December 22, 2010

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.

Tuesday, December 21, 2010

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, December 18, 2010

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!

Thursday, December 16, 2010

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, December 11, 2010

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, December 4, 2010

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.

Wednesday, November 24, 2010

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.

Tuesday, November 23, 2010

Whining

Today is the start of a week of separation . Lex is going to spend from tonight until Saturday afternoon with Nate and my inlaws. I'm miserable with out having Lex around. I know I will be able to handle the day to day stuff, cleaning, feeding the cats, etc, What I'm going to have a hard time with is the quiet times Lex normally shares with me. The snuggling on the couch with the tv on. Snuggling in bed because he's too awake and needs someone to rub his back to help him fall back to sleep. I'm going to sleep with his spare blanket tonight  so I can feel like he's near by me. If I could have my way there would be no custody agreement  that would mean Lex is several hours away from me for several days. I love my baby boy.

Sunday, November 21, 2010

Happiness

For me happiness is spending time with Lex watching Pixar movies. Happiness is hearing him giggle when he's doing something he shouldn't or he finds something completely off the wall funny. Happiness is hearing a new word come out of his mouth, even if that new word (bad) is paired with mommy. Happiness is him giving me a kiss or hug to apologize for biting or hitting me.

I've found I've been my happiest lately with it just being me and Lex. Sure things can be stressful, especially when he's slamming his rock hard head into my freshly pulled tooth spot but I am enjoying every minute of my time with my Lexy Lex.

Saturday Night Song of the Week

Okay I know I'm a little late but I crashed early last night so here's the song of the week.



I hope to find this kind of guy some day. Not looking for him now but who knows down the road?

Thursday, November 18, 2010

Feeling blessed

Today got off to a rough start. I woke up with massive swelling in my left cheek after having a tooth break last night on that side, I had an abscess. Thankfully I got in to see my dentist and we've gotten that taken care of. I'm still swollen but I no longer look like I have the chipmunk and acorns stuffed in my face.

Today ended on a good note. My good friend Crystal came over and Lex and I got to enjoy the night with her. We had planned on dinner but she stayed right up until Lex was wound down enough for bed. It was great having her around to talk to (not that I don't like talking to Lex but given his limited vocabulary it's hard to hold a conversation), she helped with bath time, brushing his teeth and getting him settled. I will be very sad when she moves to Green Bay at the beginning of the year but excited for her all the same. I know she will do great down there, she's a wonderful person and so smart how could she not?

I'm feeling pretty lucky when it comes to Lex's school and daycare now. The last two days at school it was just him in class and his teacher sent home notes about how well he did with all the one on one time. Today I got a note that there were more kids there so he had a rougher day with more hitting and head butting but after she got him settled down he still had a very good day. I think that having him attend school 4 days a week has been great for him. He has come so far when it comes to everything we are seeking assistance for, he's attempting more words, he's using some signs regularly and he has become even more outgoing, something I know can be very hard for him. Daycare has been wonderful too. Pam is a great fit for us. She understands what his limitations are when it comes to autism and she's great at explaining it to the other kids. She makes sure Lex is always included with the other kids, even if it is just the baby and Lex playing peek-a-boo. Lex obviously loves it there because he runs in every morning and doesn't really want to come home at night. Tonight she and I got talking and she started giving me some information on resources I haven't looked into as far as services to help both Lex and myself. I tend to be willing to give until I break down and she reminded me that I can't do that, it's not good for either of us, so I'll be looking into respite services. I do get a break now when Nate has Lex but that could always change.

I'm also really lucky to work with the wonderful ladies I call my friends at work. They covered for me so I could go to the dentist, handled some of my responsibilities for me since I start a little late on Thursdays and one even agreed to watch Lex next month since my daycare will be closed for her vacation and I can't take that time off of work. We are having a shower for one of the ladies in January as a surprise since she's having her first daughter and we are all so excited for her. She is such a sweetie. She knew I wasn't ready to be done having children when Nate decided he was so she wanted to make sure I heard from her when she announced her pregnancy as to make sure my feelings weren't going to be hurt. They weren't hurt at all, I was very excited for her, she's a wonderful person and mother. After all she's the mommy of another 10/15 baby, we have a very special connection.

Yesterday my baby brother and his fiance found out they will be having a son in April. I'm so happy for them. I was really hoping they'd have a girl but I know what kinds of things boys need so that'll make shopping for gifts that much easier. I don't know what they plan to name my future nephew but I'm very happy to know he's on the way. Matt and Megan will make wonderful parents, they are both pretty awesome people.

My middle brother has been so kind in the weeks since Nate moved out I almost don't recognize him. Karl and I haven't always been nice to each other (we are less than 2 years apart in age so we had a lot of competition when it came to getting approval from family and we tended to flirt with each other's friends in order to make each other mad) but I really like my brother now. I don't know if his deployment to Afghanistan really changed him that much or if my home situation changed me but we get along now like we never really have before. He's also dating a lady with a little boy who is absolutely a doll. Oliver is super cute, hopefully he and Lex can play more often since they only are a little more than a year apart in age. I can't wait to meet Chelsea (Karl's girlfriend, Ollie's mom) I'm sure if she can put up with my brother she's gotta be worth getting to know.

I have so much in my life to be feeling lucky for and I really am lucky.

Monday, November 15, 2010

Our new norm

This weekend was Lex's first with Nate in the Twin Cities. We agreed to alternate weekends so Lex can see both of his parents. I missed him like crazy. I'm so used to having Lex with me all the time it was odd to run to the store and not have to grab a cart and continually tell the small person sitting in it to sit back down. Don't get me wrong it was nice but I'd honestly rather have that time with him. Since I work so much during the week the weekends are mine and Lex's quality time together. Those are the hours I usually spend with him playing, doing crafts and just being together enjoying his laugh and trying to be patient with his temper tantrums. I guess I'll just have to get accustomed to this new norm where he's doing things with Nate's family while I try to think of things to keep myself busy.

Saturday, November 13, 2010

Testing testing

Okay so I'm a little slow and didn't realize that I didn't have a comments field on here for some reason so I changed some settings just to see if it'll work. I think the changes only start after a "new" post. If you can comment please do so, I'd like to see if I got this fixed. Thanks!

Saturday Night Song of the Week

My new goal is to post at least once a week and this will be my sure fire way of doing it. In honor of this being the first week I'm going to post my two top songs of the week. First one is a Hannah Montana/Miley Cyrus song that describes how I've been feeling about the whole separation and pending divorce. Second one is Eminem and Rihanna just because I can't get enough of that song.



Monday, November 8, 2010

A different road

Lex and I started down a different road from Nate roughly a week ago. Nate and I separated and he moved down to his mom's house a few hours south. We have started the paperwork to get a divorce. Now while some divorces are all about blaming each other ours won't be. I can't blame him for all the problems in our marriage, I'm just as much at fault. We've been trying to work on these things since March and no matter how much we improve we always fall back into the bad habits. In the end we are doing what's best for us and Lex.

Lex is living with me most of the time and will be staying with Nate part time so that he always knows his dad loves him. I do have to say that even just being separated a week has proved most beneficial for Lex. I know I'm not as frustrated as I was and that trickles down to Lex, I'm not as quick to be annoyed when he's refusing to communicate and instead just wants to scream. He's getting more one on one interaction because of all the time it's just me and him.

I love being a single mom so far. We've had a few rougher spots (changes in his routine/schedule, cutting his nails and hair) but I would say overall it's been a good week. Lex makes me laugh when I feel down and I make him dinner lol. I think I'm just eating up that he has so much affection to give and since Nate's not here I'm getting it all. We've also developed new games in everything we do and discipline isn't a problem since I'm not trying to battle differing views. I just hope that Lex realizes that we both love him very much I just happen to be a bit better at handling my difficult child when he wants to be difficult.

Saturday, October 23, 2010

To the north or the south?

I've come to a fork in the road and I have to decide which direction to go. Neither is the "right" way they are just both very different. They are both going to have winds and bumps but of differing varieties. If I was just making this decision for me it would be easy but I'm not. I just know I can't keep going straight because that leads to nowhere and more frustration.

Sunday, October 17, 2010

Happy Birthday Lex!


It's hard to believe my little boy is 3. It seems like we just celebrated his first birthday. I love having this little kid in my life. As tough as things may get his smile can always make me smile, his laugh makes me laugh and he's just a rough and tumble little guy. Autism may be his "label" but he is always just my Lex.

Wednesday, October 6, 2010

Yay for change!

Lex had his first day of special education pre-k on the first and he LOVED it. I had a hard time with the idea of getting him on the bus and him going to school and then back to daycare but Lex took it in stride. He had no problem getting on the bus in the morning (I was the only one to shed tears), his teacher sent a note home letting us know how the day went and that he will be a great new friend for the other kids and he made it back to daycare with only minimal tears. He went again yesterday and was incredibly excited when he saw the bus pull up in the morning. Today was rough for him, there was no school. When we were leaving for daycare a bus drove by and he ran down the block after it because he must have thought it forgot to stop for him. When we got to daycare he wanted to sit in the spot we normally wait for the bus at but since I had to get to work I insisted he come into the daycare with me which of course set him off (he thrives on routine and this was throwing a wrench in that routine). He was not happy to be at daycare and I can't say I blame him. We will be switching his daycare in just over a week to a home based center where he can have more one on one time with someone that has more special education/autism experience than his current teachers do.

At the end of next week we'll be losing our services with Birth to 3 since he is aging out of the system. I'm really sad that we won't have David and Paula coming into our home weekly. They have been wonderful in the last year and I know Lex loves them. I think for our "wrap up meeting" on Monday we are going to make thank you cards. It's been a gift having them to help us with the tough times and celebrate the good times it's like having a family member leave. After all, Lex isn't the same kid he was when they started with him.

Lex has started babbling and talking a ton more in the last couple of weeks. He is regularly using his signs and he's attempting many more words. Each new attempt makes me excited for the future. I dread the idea that he's growing up and won't be my baby forever but I love seeing him grow, he's an amazing little kid. Each new skill, each new word and each new moment (tantrum, happy or somewhere in the middle) makes me glad to have him in my life.

Thursday, September 30, 2010

End of one road, start of another

Tomorrow is going to suck. Tomorrow I'll be putting my almost 3 year old on a school bus to take him to his first day of special ed pre-k.
I'm sure he'll do great, maybe have a rough start of it but in the end Lex will thrive. He is so adaptive when it comes to play environments and his teacher said that's first and foremost what her classroom is that learning happens naturally when the kids are playing and interacting. I'm excited to see how he handles the transition to "big kid" status. He'll ride the bus to and from school 4 days a week and 3 of those days he'll go right into daycare.
I on the other hand will not do well with this transition. My feelings are so mixed, pride and worry and sadness have become my 3 shadows these days. I'm so proud that Lex will be doing this, that he will take most of this in stride and be a better person for it. Proud to simply be the mom of this amazing little person. I worry that he'll have a rough go of things just like the transition to the 2 year old room at daycare. That he may not work to his potential because he could be stressed out. Lex isn't a big fan of change and this is a pretty big change. I'm really sad to see the end of the baby days nearing. Since he'll be my only child (barring some miracle) it's hard for me to let go of the sweet baby. He hasn't been a baby in almost 2 years, he's been this rough and tumble, mess and monsters kind of boy but I really just want to hold onto him where he is. Every day is a new adventure, he's talking more, dancing, jumping, and being infinitely more affectionate than he ever has been.
I attribute a lot of the new found skills to all the hard work he does, Nate and I working with him and then his wonderful therapists David and Paula being there and being amazing resources. It's hard to imagine we'll be navigating the world of autism and sensory integration dysfunction without them in 2 weeks since they have been our guides but it'll have to be something we do. We know the skills it's just time to apply them.
I'm not ready to start down this new road but I think Lex will grab my hand and pull me along no matter what.

Saturday, September 18, 2010

Busy and frustrating

It's been a busy couple of weeks here. We completed Lex's evaluations for entrance into the school district and they were pretty right on in relation to where he is developmentally and socially. He'll start his first day of school on October 1st but his last meeting with his current therapists will be the week of his birthday so we'll be doubled up for 2 weeks.

Last weekend we did the Northland Autism Walk. Our team met our goal of $450 and passed it. We had a lot of friends and family come out and walk with us, all of them rocking the tie dye shirts I made. Team Lex was amazing.

This week Lex was moved over to the 2 year old room at daycare. While I wasn't happy about this idea I know they have to do it, one because of his age/size and two because of the numbers of kids they have to maintain in each classroom. The first day resulted in Lex clinging to his old teacher, but I had no information about the day because she didn't know. Second day was more of the same but I sent a communication notebook so we could try to relay information back and forth. After that day I was not happy with the classroom teachers. They made it seem like they weren't going to make an attempt to keep Lex interacting in anything. Nate and I had a meeting with the center director and the teachers yesterday to discuss their concerns and see what can be done to make this easier on everyone. I felt very attacked at this meeting like I was asking them to do something that's not in their job descriptions and that they just don't have time for a kid like Lex. They seem unwilling to do his brushing protocol or even give him a couple of minutes to unwind away from the other kids before bringing him back to projects and circle time. I understand that they have 14 other kids to think about but they need to think about Lex too. I got the feeling during the meeting they really want to have us leave the daycare so that's my intention. I don't want to but I want to do what's best for Lex.

Friday, July 23, 2010

Best part of my day.

Since I know sometimes I can have a hard time seeing the good things in my life I wanted to share the best part of my day.

It wasn't the fact that the doctor I work for wasn't on call. It wasn't that instead of the 19 patients a day we've been seeing we saw 10 out of the 11 scheduled. It wasn't knowing that my brother was picking up his puppy and that meant no more puddles on my floors. It wasn't even the peanut butter bar the doctor I work with bought me.

It was the 10 or so minutes I spent on the floor just cuddling, playing and laughing. I didn't focus on the fact he was doing so well at holding his attention. I didn't focus on the dozen or so finger prints followed by occasional drops of spit on my glasses. Instead I focused on his laugh, so contagious it makes me smile just to think about it. I focused on the kisses that turned into playful bites on my cheeks and shoulders. I focused on what an amazing child he is, how lucky I am to have him and how excited I am to be home with him all day tomorrow, even if I won't feel that way after a full day of trying to keep him and our dog out of trouble. Tonight for that short while it was just about a boy and his mom and their shared joy, laying on the floor, making noises and memories.

Sunday, July 18, 2010

Frustrated

Lately I feel like I've been stuck between a rock and a hard place.

Lex has been a bit more difficult than normal because I haven't been getting my mid-day break since he has started the process of quitting his afternoon nap, which makes him crabby by 5pm. He has also figured out that he is big enough to climb out of the tub during bath time. The first couple of times he climbed out of the tub I thought it was very cute but now I'm not terribly fond of the drenched floor and 2 year old streaking through the apartment. I am proud of the fact he's making strides developmentally even if it's not through speech. He has also started using the sign for cup (well his approximation for it) and he's very proud of himself when he signs to me and I jump up to either get him a new cup or refill the one he hands me. Even with the increase of communication he is still throwing tantrums regularly. I know a big part of that is the inability to fully communicate what he wants or needs to us and that's he's 2.

Some days I just want to join him in the tantrum. I've been feeling stressed between the amount of housework, taking care of Lex and going to work that I have to do everyday. I know that I'm not the only one here that can pick up the daily messes, wash dishes and take care of Lex but I am feeling like it's all my responsibility. I go on strike when it comes to housework but I tend to be the first one to give in. I can't handle the clutter and mess, I can't fall asleep with a very messy house.

Another part of my stress is our total state of being broke. No matter what I do we still have several bills that are late, items that we need that we can't afford and having to hope that we don't have a major emergency or that the car won't break down leaving us stranded.

I just don't know what to do anymore. I know that we'll get through this all somehow but right now things are pretty dim.

On a good note both my brothers are currently home. Matt is just visiting and he brought his girlfriend home to meet us all. Karl now lives a block from me and stops in frequently. He also brings his puppy, Chloe, by for us to puppy sit when he goes to hang out with his friends. It's just nice to have him nearby and Lex is eating up his time with Uncle Karl because they can rough house, watch cartoons or both wear hats and sunglasses and look like studs. They are too funny.

Saturday, July 10, 2010

Weekend work








I can handle doing this type of work on the weekend. :)

Thursday, June 24, 2010

Our trip

Welcome to Holland

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 guidebooks 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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. 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, 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."

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

Written by Emily Perl Kingsley

I've been reading this poem a lot lately. It's in more than one of the books I bought on ASD and in a few I've borrowed from the library. I kind of feel these days that it is really accurate for us. I freely admit that I never expected to have a child that would be attending speech and occupational services so often let alone a child with Autism. But I really wouldn't change anything about him. He may have major meltdowns (what 2 year old doesn't?), he may kick, bite, hit and pinch me regularly but he's still my Lex. He sings "rolly poly" and "icky sticky" with me all the time (not the actual words but he shows me the hand movements he learned at daycare), he loves to snuggle with me and we run around like a couple of crazy people in the evenings to help wear him out. I'm sure if you ask me in a few years I will have very few recollections about the tantrums (with the exceptions of the scars he has left me with) and many memories of all the sweet, fun things we do.

I'm rather enjoying our trip to Holland. Italy has nothing on this.

Sunday, May 30, 2010

Autism hot button (warning very long and rambling)

Before I start I know this is an hot button topic especially with parents of autism kids but I want to express my thoughts.

I am currently watching Dateline NBC and Matt Lauer is doing a special on autism, vaccines and G.I. disorders. They mention specifically Dr. Wakefield and how he has evidence that autism could be caused by vaccines, specifically the MMR. While I am a big believer that children should be vaccinated, the more children that are vaccinated the less likelihood of outbreaks of disease that could potentially cause suffering or death, I do worry that vaccines harmed Lex. I'm not saying that by any means he will not finish his vaccines for kindergarten when it's time, he most definitely will, I worry that the sheer number of vaccines he was given before his second birthday may have done more harm than good. I vaccinated him completely on time with the exception of one dtap (diptheria, tetanus and pertussis) and one hib (haemophilus influenza type b) and those were due to the resident he was seeing as his primary care physician forgetting during his well child visits that he needed them. Lex's kindergarten vaccines will spread out more because he does have behavioral and developmental fall backs when he gets shots, any shots. We gave him bicillin in April for a case of strep (far easier to poke him once than try to coax him to take oral antibiotics 2-3 times a day for 5-7 days) and we saw him slide back in behavior and we lost the sign for "more". I think for him this is the natural progression of his autism in combination with the "terrible twos".

I give vaccines every day I'm at work and the bulk of the children show no signs of developmental disorders, most of them being on the current CDC vaccination schedule, I can only think of 3 other children that Dr. Whitworth sees (she is also Lex's doctor) that have marked developmental disorders, she sees the most children in our clinic. I can't honestly believe that vaccines cause autism because there is no significant research connecting the two. I believe it may trigger traits that are already there to become more pronounced (I think this is the case with Lex). I tell parents honestly that my child has autism and he has been fully vaccinated but that I don't believe the vaccines caused him to be autistic. (As a matter of fact there has been more research pointing to changes in brain development during the second of trimester being related than timing or types of vaccines given).

In other news the transition meeting we had last week went well but was very overwhelming for me. We found out that pending a re-evaluation by the school district this summer he will start a program at my old elementary school going 4-5 days a week for a half day each. The school district will bus him there and back to daycare. He will most definitely continue speech services and possibly occupational therapy. There is also a chance that we could have a speech therapist come see him at daycare but I think if he will be attending "school" that much we will do much better at not overwhelming him if we just do the half days. I have come to the conclusion I would also like to get him involved in another free local program for more speech services. I know he is progressing but he's still pretty far behind. We also sent in paperwork for another program based in our area that will help us with a diet and supplement program. It can't hurt him to take some of the crap he eats out of his diet (the kid can pack away M&M's and sugar like no one's business).

We recently saw his doctor to run labs to make sure his body could handle supplements and a diet change. So far his labs have been normal (we have gotten results for his kidney and liver function tests) but we are still waiting on levels for copper and zinc. We also addressed our concerns about his aggression levels and recent difficulty sleeping. Like we thought she thinks they may be related and she thinks that starting melatonin may help address this on nights he's particularly restless. We haven't started it yet because he has pretty much crashed of exhaustion that last couple of nights due to busy days but I think we may give it a shot tonight. I just hope he doesn't get any major side effects from it, I know in the past I have had some daytime sleepiness from it. She also recommended that we continue to try to wear him out and get him to bed on time and we do most nights.

He has been moved back to the 18-23 month room at daycare and seems to be loving it. With the exception of Friday afternoon they reported a decrease in aggression and an increase in eye contact (they think Friday may have been related to the 3 cupcakes he had at snack, he stole some from the other kids, like I said the boy loves sugar). I'm very happy to have him back with Lisa and Dani in that room, he just seems happier overall, we only had one meltdown during drop off this week and it was Tuesday. Karolyn told Nate that Lex did fine once he realized I was gone. I think it also helps that I've made it a point to sit down and chat with his teachers during pick up at least once a week to check in and see if they need us to do anything different or if we can help them with anything.

On my end things are still a little rough going with Nate but we are going to meet with our therapist during my session on the 9th in hopes that we can have an impartial referee help us. I think the current meds are helping him but he hasn't been sleeping since he has been trying cut back on some of his sleep aids. Hopefully once he's sleeping again we'll be able to really work on our relationship.

I'm also still very sore from my ganglion cyst removal 3 weeks ago. So far this is the only surgery I regret having. Had I known I was still going to be this sore I probably would have let the cyst be for a while longer (like until Lex is walking everywhere regularly). My surgeon's partner recommended resting it and icing it all weekend but that hasn't happened since we attended my uncle's funeral yesterday and Lex has wanted to be with me all day, not to mention my dog being trouble earlier when we went for a walk and pulling me all over town.

I am focusing on losing weight and getting healthier again. I know I've been down this road in the past but now I have help from my doctor and my dog. My doctor prescribed phen.termine for me to help with my out of control appetite (likely related to my pcos and insulin resistance). I have noticed a difference since starting it. I have set a personal goal of walking with Bella at least 13 miles a week. I figure she loves being out for walks and I can use the time to exercise. Besides she loves to chase squirrels, birds and cats so I'm always pulling her back on track, that uses a lot of muscles as she is no tiny puppy (50 or so pounds).

We are also signed up for our first autism walk! We are very lucky to have many family and friends agree to walk with us already. It's not until September but most of Nate's family has agreed to make the 3 hour drive to walk with us on "Team Lex". I can't wait!

Sunday, May 23, 2010

Nerves

I've always been a worrier, I remember worrying when I was a little kid going to kindergarten (I thought I was never going to make friends since my best friends went to a different school) and now I've taken it to a fine art. I guess being Lex's mom has been making me stronger but a bigger worrier at the same time. Tomorrow is Lex's IEP for the transition to the school district. I'm more worried about this than I was his initial IEP for birth to 3. Nate has to leave for work 15 minutes after the meeting is supposed to start and I'll have a house full of specialists (birth to 3, daycare teachers and school district) and I'm trying to figure out the best goals for Lex but the whole thing may change over the summer since he won't be transitioned over until October when he turns 3. I'm hoping we'll have to change his goals because he'll be further along with speech and behavior. Speaking of behavior we've really hit a wall. He has recently decided Mommy makes a great punching bag and teething ring. My parents gave us a great recommendation that when Nate is home he is supposed to take Lex away from me until he can calm down enough to give me a hug and not hit/bite anymore. The only thing that really stinks is that Nate and I work opposite shifts most of the time so it's just me and Lex most evenings. I try to separate myself when he gets aggressive but I can't just leave him and go into the kitchen (it's gated off to keep him out of trouble) because he typically gets aggressive when I'm trying to keep him out of trouble (most recently opening the gerbil cage and squeezing them). I'm just at a loss because I know he gets the same way when he's at daycare and I want to be able to give them recommendations.

On an up note he will be moving back to the 18-23 month room on Tuesday for sure. I hope this will help cure some of the problems he has at daycare.

Saturday, May 15, 2010

Ups and downs

I feel like I've been on a roller coaster a lot lately and the loop de loops are getting old.

I'll start first with Nate. He's been terribly depressed lately and none of the medication or supplements he's been prescribed have been working. I can't get him out of bed or to help around the house much and it's frustrating me. I just don't know what to do for/with him. I don't feel like talking is getting us anywhere so I'm at a roadblock. I know he says he's trying but I have a hard time seeing it when I'm working so hard to keep the house kept up with a swollen and bruised hand/wrist (had a ganglion cyst removed on 5/6/10 and now I keep overdoing it).

Life with Lex has definitely been interesting lately. We have great days and really awful ones a lot lately. Yesterday he was a doll, we had a rough drop off in the morning but after spending the day in the 18-23 months room (his regular room had too many kids) he came back to me sweet as pie. Miss Lisa had bad news for us though, he won't be moving back to that room until June, they thought they had figured it out to get him back there sooner but due to numbers he'll still be in the 2 year old room. Lisa was very apologetic but it still stinks, I want him to be where he thrives and now we have to hold off on that. We came home and had a quiet dinner and after bath he let me do his brushing protocol, something we haven't been able to do for a while. Bedtime was later than normal but he went down without a battle.

Today we went to the zoo with a few of my friends with work and I can definitely see where he is different than other kids his age. Most of my coworkers' kids are in the 2-4 range and were interacting like crazy. Lex wanted very little to do with them. He was only willing to play with my friend's daughter, probably because she's very cute and pretty quiet compared to all the other kids we were with. I couldn't get him to play or stay out of trouble for anything, any change resulted in a temper tantrum with him kicking and pulling my hair (I will be bald by 30 at this rate). The good thing is since we ate lunch before going to the zoo he came home and took a really good nap, allowing me to take one too.

The 24th we have a meeting to start the transition process to have Lex's therapy be through the school district, I'm nervous as all get out. I know that the school he'll be involved in isn't far from home but I'm worried about how he'll handle the transistions, they are not his strongest suit. I did invite someone from the daycare to join us since they are a huge part of his care team, hopefully someone can make it. My next goal is to get him involved in the local aut.ism treatment and resource center. We have an appointment with his doctor to get the labs done prior to the first appointment at the center. We are also starting a gluten free diet for him in the next couple days. I opted to do just the gluten because he is a big milk drinker and I feel that he needs calcium that milk provides. I just hope I'm doing the right things for him.

Thursday, May 13, 2010

The Ten Commandments for Parents of Handicapped Children

1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.

2. Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.

3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.

4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.

6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.

7. Be honest with your feelings. You can't be a super-parent 24hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts when ever necessary.

8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.

9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.

10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

Author unknown

Sunday, May 9, 2010

What it means to be a Mom

My mother is a wonderful woman. She is who taught me about love, tenacity, joy and sadness. She and I haven't always seen eye to eye, very rarely did we back in my teen years. My mother is strong and determined but always supportive. I learned from her how to work hard and how to play just as hard. My mother is my closest friend now that I'm an adult even if when I was younger I thought she was doing the things she did just to get a rise out of me.

My favorite moments with my mother have been rollerskating, playing volleyball in the yard, seeing her immediate love for the grandson she declared would never call her "grandma" and seeing my son play with her the way I remember playing with her as a child. We have endured many hard moments together. My grandfather's cancer diagnosis, my grandfather's passing, the days my brothers shipped off to boot camp, the day my brother deployed to Iraq and the day I had my miscarriage.

Our relationship has never been and most likely never will be perfect but I wouldn't change it for the world.

Lex woke me up bright and early this morning, I think he couldn't sleep and the dog woke him to get me up to take her out but I wouldn't have changed this Mothers Day for anything. I got to spend quality time with my favorite 2 1/2 year old. We went to lunch with both of my grandmothers and my parents and now my boys are down for naps while I relax and paint my nails.

Saturday, April 24, 2010

Wishing

It's another dreary day here in Souptown but at least it's finally raining like we needed. Normally on dreary days I like to curl up and catch up on my friends' blogs and sometimes even comment (I really am horrible at commenting I can't think of things to say most times and when I can I often ramble... just like this). I've been using this dreary Saturday to catch up on the housework that was neglected while I was sick this week and to think about things I really wish I could do.

The first thing would be to become better at taking pictures. I really love to take pictures but I lack the talent or skill to take really wonderful pictures. I get lucky here or there but most of my pictures lack the special something that makes them pop. It's not that I don't have a wonderful subject because Lex is so dynamic when it comes to his expressions that no two pictures would ever be the same. I mean just look at this kid.



You can't get much cuter than Lex in the tub except when he's on his trampoline or in the park.



Another thing I wish for is more time with Lex. I get to spend the better part of my time with Lex but I do work around 32 hours a week and most weeks that seems like too much. He is very much a Mama's boy and when we are home together it is mostly just him and I, the way it has been most of his life. We were very lucky for the almost the first year of his life Nate and I worked opposite schedules so someone would almost always be home with Lex or he went to spend time with his Nana and Papa (or Grandma and Grandpa if they were in town). At 11 months old he was enrolled in his first daycare because Nate went back to school and I was working almost full time. We are still pretty lucky because he is in a daycare where I know the teachers care about him and the owner of the daycare knows who he is in spite of the large number of kids enrolled there, but I wish there was more opportunity for me to spend time with him.

I wish that rather than kindergarten in a few years we would be doing homeschooling. Don't get me wrong I loved being in public school but with his special needs I tend to feel that he needs more one on one time to grasp the same things other kids get quickly. He's very smart but terribly strong willed. I can tell him 3 dozen times that it is not alright to climb on the tv stand and remove him every time and try to redirect him (punishments do not typically work, he doesn't really grasp why he's being put in a corner and I do not believe in spanking him unless it's absolutely called for, ie endangering his limb or life) but he will keep doing it until he's bored of it. Who knows when we start working with the school district this fall for his speech and occupational therapy I may change my mind completely, it's been known to happen.

I wish I had the capability to teach his daycare teachers what works and what doesn't for him. They are really struggling with Lex because he is not the typical 2 year old but he has a lot of the same mentality of a terrible 2. Developmentally he is roughly 18 months old even if physically he is 2 1/2 years. The move back down to the 18 - 23 month classroom with be good for him and better for his teachers. Miss Dani and Miss Lisa are very familiar with Lex and he loves them immensely. Miss Lisa has been pulled in the past to coax him down for a nap so I'm sure he'll be much more comfortable when he gets back to that room.

There are only two more things that I wish for, one that's highly unlikely and one that will probably happen down the road. The first is to have at least one more child, this is the unlikely one. My PCOS seems more out of control than before I had Lex and it's just not financially feasible to spend the amount of money we spent conceiving Lex given all the speech and occupational therapy bills we have to pay. Not to mention my desire to go back to school to become an M.D. The second thing I wish for is a dishwasher... I know it's ridiculous but good grief I hate washing dishes and sippy cups are the worst. Our sink in our apartment makes doing dishes particularly awful given that it is very shallow and only has one bowl to it.






Saturday, April 17, 2010

I love being Mommy!

I know I complain and lament about our difficulties a lot on here so I thought it was time to post about the good things in my life.

I love being a mommy because:
  • every morning I wake up to the sounds a building blocks clicking together and Lex "talking" to himself.
  • I get to snuggle with an adorable boy pretty much anytime I'd like.
  • every day is an adventure.
  • every evening I get a hug from a freshly clean boy straight out of the tub.
  • running around the apartment giggling and roaring like a dinosaur is a great aerobic activity.
  • sharing half of everything I want to eat is a great way to cut calories.
  • I'm happier more often.
  • it's not so odd to have a Pix.ar movie on to enjoy.
  • I can get super cute kid related checks and everyone understands why I have Light.ening Mc.Queen on them.
  • I laugh at least 50 times a day.
  • shopping is no longer a chore, but an adventure to see how fast we can get done or how much Lex has added to the cart (where did the 6 boxes of animal crackers come from???)
  • I get to enjoy new words or activities on a regular basis.
  • a date at Mc.Dona.ld's with my boy is the best way to end a long work day.

While I do have a hard time remembering to be happy some days because of Lex's limitations I also have so many more reasons to be happy. As far as we know right now he'll be moving back to the 18-23 month classroom by May. I think this is the best first step for him right now. His teachers in that room were more than willing to have him back and they are really his two favorite teachers in the daycare. I'm also looking into further intervention services or a personal care assistant for him. I don't know what the school district will be providing him when turns 3 but I should be finding out some of that information in a few weeks since they will be evaluating him in May. Lex's speech therapist has yet to send his recommendation for the autism diagnosis to Lex's doctor but she and I have been discussing it lately and she will most definitely be signing off on the diagnosis and said any services we need her to sign off on or any referrals we want she will do. She's the primary doctor I work with at the clinic so we are pretty lucky to have such a good relationship with her.

Tuesday, April 13, 2010

I wish I knew

I'm feeling really stuck now with Lex and the situation at daycare. Recently we've been getting periodic calls about Lex's behavior at daycare, he's hitting, pulling hair, biting and all around just causing trouble. I try to give recommendations but today it came to a head. Nate received a call asking to have a meeting set up to discuss Lex, his behaviors and what can be done with the whole situation. After much discussion the plan is to try moving him back to the 18-23 month room and see how he does there since there are fewer kids and a slower pace. While I feel that this decision is pretty good I'm worried that I'm not making enough strides to help him. I really do like his daycare and the teachers in the room he's in now aren't bad but I can't help but wonder if maybe pulling him from that daycare and putting him in a home based one where the limit on children is lower would be best for him overall. The main downside I see to that is the likelihood of him being too much for one person to handle is higher (each of his daycare classrooms now have at least 2 teachers). I want to do what's best for my family and taking care of my son but I really have no idea what that is right now. I can see why when a child is diagnosed with autism sometimes parents quit working... if that was only an option.

Tuesday, March 23, 2010

"Instant Karma"

That's the name of the House episode I was watching last night that made me sit back and think, most specifically the quote "People don't get what they deserve. They get what they get". While in that case House was trying to prove that karma has nothing to do with a man's child being ill. My logical mind knows that what House said is true but then there's a part of me that believes in karma isn't so sure.
I often ask myself what I did to become infertile. Was it from not listening to my parents as a child, becoming sexually active at a relatively young age or from picking the wrong man to have children with (I love my husband dearly but I married a man that didn't want children). Logically I know that my infertility stems from a hormone disorder, not anything I've ever done.
I also know this is the same logic I need to have in regards to Lex and his Autism diagnosis. I often wonder if things would have been different if I hadn't taken Lor.tab for my severe back pain, had scan after scan on my lungs or the elective induction and subsequent c-section. I know that none of this caused Lex's autism but I can't help to think that my karmic balance is off.
I wish there was something I could do to help balance the scales but if there's not that has to be fine too. I can't live my life in the what-ifs. There is too much in my life for me to enjoy to dwell on what isn't there.

Spring cleaning

Every year I tell myself I'm going to buckle down and spring clean and most years it just doesn't happen, this year is different. I've already accomplished quite a bit by getting all of the baby clothes that we'll never use again as well as a bunch of toys and other things that I haven't unpacked from our move over a year ago. I have to admit I cried when gathering the baby clothes. I've always felt that I would have more than one child but Nate and I have come to an agreement that we should probably just have Lex. We are financially strapped and it doesn't look like we'll be rolling in the money anytime soon. Speech and occupational services will stop being free in October and Nate has at least 2 more years of school and then I wanted to go back to get my M.D. With all those in consideration I've decided that my desire to give Lex a sibling just wasn't reasonable, especially knowing what I had to do (clom.id and injectibles with IUI) to conceive him. I fear that he'll feel alone in the world but I hope that my brothers will get married and have children soon so that he can have at least one cousin (other than Haiden) close to his age that he can be close to like I have.

I guess in addition to the spring cleaning of my basement I did a little spring cleaning in my soul.

Wednesday, March 10, 2010

Weight lifted.

Today Lex's teachers helped lift a weight off my shoulders. We met with them to discuss Lex's diagnosis and what we can do to help them and what they can do to help us.

We started off notifying them that we know about Lex's penchant for misbehavior and that it was okay to use a heavier hand with him than they would with the other kids and giving them how we treat such behaviors at home because we want to keep that a level playing field. I informed them of Lex's diagnosis and what his signs and symptoms at home are and they shared what his are there. My new assignment is to come up with some information for them about what Autism is and what we can do to help Lex become a participating member of his class. We tried to reassure them that he can be part of the class when he wants to be and to definitely keep up with any brushing techniques that his O.T. has taught them to help bring him around to being a more focused kid. They are also going to look into getting a tent for his classroom to give him a place to retreat when he is too sensory overloaded. All in all I feel better about the situation even if it means I need to sit down and do some homework.

Another bright spot of today is realizing that Lex is starting to show some affection not only to me but to his books. He has a baby sign language book and it has a picture of a baby that's crying and he kisses the baby better. Today while he was watching his "music videos" on youtube he leaned over and gave me several kisses on my arm where I had a mole removed, it melted my heart.

Sunday, March 7, 2010

The 5 stages

I am copying most of this right out of my personal journal so don't be surprised if it makes very little sense or has very little flow.

The grieving process is usually 5 steps (denial, anger, barganing, depression and acceptance) but I feel like I've mastered 3 of the steps recently and not in the correct order. (I've also read/heard that most parents of a child that has special/different needs go through this process over and over.)
I have been going through denial, anger and acceptance most recently. I originally accepted Lex's autism diagnosis because I knew it fit just as much as sensory processing disorder does (70% of kids with spd are also diagnosed with autism).

Then I went down the road of denail. I believed he wasn't really any different from the kids in his 2 year old class. Sure, he didn't talk and he has some negative social interactions but he didn't seem like he was all that different.
Friday morning opened my eyes. When I dropped Lex off in his classroom at daycare the other kids didn't want to play with him and he ended up sitting by himself with some blocks. Picking him up was more of the same. The other kids were running and playing together and Lex was hanging out in a corner by himself. Then came the report from his teacher that he was being aggressive again, pulling hair, pinching, hitting and biting for really no good reason.

I'm angry that the teachers don't encourage the other kids to play with Lex. I'm mad that Lex is being so difficult at daycare. But I'm most angry that I don't know what to do for him.

I guess I'm grieving the child I had expected Lex to be. Don't get me wrong I know he'll be able to do many things but most of life is social and he will have a very hard time with that. When I dreamt about Lex when I was pregnant I never dreamt about endless therapy or a child that is an outsider among his peers. And while I know I should be happy that he is happy and healthy, I fear what is going to happen to him in this world that isn't so understanding.

Saturday, February 13, 2010

Blessed

I've been doing some thinking about Lex's diagnosis and anyone who knows me knows I'm not overly religious but I think the diagnosis was the Goddess' way of thanking me. I had a hard journey to get pregnant with Lex. My pregnancy was riddled with small problems and goodness knows labor didn't work out so well (c-section) but I'm really blessed to have Lex. I now realize that I will have a different insight into every day things, Lex won't look at things the way I do. Every activity is an adventure.

On a side note the 15th marks 8 years with my hubby, it's amazing we haven't killed each other yet. :)

Saturday, February 6, 2010

Thinking

I've been doing a lot of thinking since Lex's speech therapist gave us his recommendation for the Autism diagnosis on Monday. I realized that it wasn't a surprise that we got this diagnosis for Lex. I've kind of known since he was tiny that there was something about him that made him different than other kids his age, not a bad different, just different. I think I just thought I felt that way because he was my baby and other kids weren't.

His speech delay was a big surprise for me. I started talking early and Nate never stops talking, so I thought he'd pick up words left and right. I had high hopes after his initial speech evaluation and when we got started with those services at the hospital. I was kind of in denial that there was much going on other than a simple speech delay. As time moved on and he had only picked up the sign for "more" and wasn't saying much other than "mama" and "dada" I started to worry that we weren't doing the best we could for him. At that point we added occupational therapy at the hospital with the thought that he had sensory integration dysfunction and that his sensory problem was the reason he didn't talk. After a few months of doing both speech and OT and Lex showing minimal improvement we decided to try a different mode of therapy, birth to 3 through our county. His initial evaluation with his current speech therapist showed he was far behind in expressive language and it was hard to judge how far he was on comprehensive language. We started services in September with Lex having speech twice a week, one at home and one at daycare. I saw more improvement at that point but I was afraid to get my hopes up again. We added OT in November realizing that he most definitely had sensory integration problems.

We've just been chugging along right up to the point when his speech therapist asked us if he could do a new autism screening test on Lex. Lex was the first child he was going to try this screening tool on but since he knows Lex pretty well he figured he could test him pretty accurately. At that point it clicked for me, I did a little more research and after the test I just knew. When David sat down with us to discuss the results I think he was surprised I didn't cry. But for me this was validation. I had been right in my thoughts about Lex having the dual conditions of autism and sensory processing disorder.

We are going to continue speech and OT services with the county until Lex turns 3 and then we'll be moving up to the school district but I remain hopeful that one day you won't be able to tell Lex is any different than his neurotypical peers. Even if that day never comes I know my son is still an amazing child that wows me everyday and will continue to wow me.

I don't worry that he'll have problems in school or that he'll have a hard time making friends, my only worry is that we didn't do enough soon enough. I have heard from a co-worker that is the mother of a child with Asperger's that I'm definitely doing the best for Lex right now and it's amazing how much we have done in the last few months but I'll always worry there's more we can do.

Wednesday, February 3, 2010

What we know.

Monday was an incredibly busy day that gave us lots of information.

1. Lex needs more sedative than other kids his size to put him out. He got an extra half dose after holding on strong for 45 minutes after the initial dose.
2. Waking up a kid under that much sedation is not easy and can induce vomiting (the first time in his life).
3. Watching my 2 year old try to walk after sedation (3 hours after he woke up, 5-6 hours after they gave him the second dose) is hilarious and nerve wracking at the same time.
4. My son can hear! He passed the test with just a minor deficit in the lower decibels that is common with kids with tubes.
5. Upon approval from his doctor Lex will be diagnosed with a mild form of Autism. Lex's speech therapist has to write up his report from the test and send it to the doctor. I fully expect that she will sign off on the diagnosis. We plan on discussing it tomorrow when Lex sees her for his tonsils being swollen. (Besides that I work with her and I know how she is when it comes to diagnosis and orders).
6. Expecting the worst and not getting all bad news pays off, it made Monday come much easier. I amazingly held it together when the speech therapist told us the results of the Autism screen. I think it's because I had a huge meltdown once Lex was sedated and he was hooked up to all the wires... that made me nuts. I also had my suspicions about him being Autistic so I wasn't totally shocked.
7. We are doing all the right things to get Lex on track to being similar to other kids and we have been for several months.

Wednesday, January 27, 2010

Taking every day

I'm trying really hard to take every day as it comes right now and it's really difficult for me. We are still waiting for Autism results from Lex's speech therapist, he was supposed to have them a week ago but the test took longer than he anticipated to grade and then we were supposed to get them on Monday but he canceled Lex's therapy due to a dentist appointment. And while this makes me mad I'm more upset that Lex hasn't had speech therapy in three weeks (he didn't have it the week we did the Autism test, the week after we had a meeting with all the therapists and now this week). Next Monday is his sedated hearing test and I'm nervous as all heck that Monday I will get slammed with "bad" news. I don't really view it as bad that he may be on the Autism spectrum and have limited hearing but just as another hurdle that we'll have to leap.

It probably doesn't help that my little angel has been more of a devil than anything right now and I just want to put him to bed the instant he gets home from daycare just to keep him out of things. The kicker is he knows he's being naughty because as soon as I finish punishing him he's right back to what he was doing with a great big smile on his face. This weekend I thought his extra naughty nature was just due to him running a fever all weekend and feeling like crap but Sunday when the fever broke the naughtiness just continued. Time outs and distractions are just not cutting it so I'm at a loss.

Tuesday, January 5, 2010

When it rains it pours

Please don't take this as a "poor me" post as that's not what I've meant it to be but I just need to vent some frustrations and what better place than my own blog?

We'll start with yesterday. I went to my doctor's office in the morning to have some moles evaluated and on my home my car started to act up, it smoked a little and the battery light kicked on. I was hoping that it would last until Friday so Nate could take it to the shop and be checked over.

Lex's speech therapist asked us at the end of the session if he could test Lex for Autism next Monday when he comes to see Lex. And while I know that it won't change Lex it'll just give him more help through the Birth to 3 program it was incredibly hard to hear that my boy could be anything less than perfect.

Today Lex had a follow up hearing test and visit with the ENT after the placement of his tubes. His ears looked great and the tympanogram was perfect. He did not pass the hearing test like we hoped. He did better than last time he did a hearing test but it was not well enough to cancel the sedated test we have scheduled for February first. We may still have another awake test before then but we'll see how the scheduling goes at the ENT/Audiology office.

After the disappointing visit at the ENT office Nate dropped me off at work and on his way home with Lex our car died. The power went off and he didn't even make it off the highway. Thankfully some kind soul pulled over when he saw Nate and Lex on the side of the road and gave them a ride to Nate's favorite store where he called my mom and she came to get them and kindly paid for our car to be towed to a shop (we are incredibly lucky to have such wonderful parents who understand we couldn't pay for it between Nate's loss of employment and my payday not being until Friday). The shop found the problem relatively quickly, the alternator we replaced 3 months ago froze up and needs to be replaced. The silver lining is the part is under warranty and the shop can replace it for just the cost of labor.

With all this stress and some anxiety about Lex's future (I know better than to worry but I can't help it) I have decided that when I see my doc to have two moles removed I may ask him about an antidepressant as I suspect that's the source of my insomnia. I may have to ask him about something for my neck/shoulders too since I carried Lex around a lot of today and even with my muscle relaxer and a heat pad they are really sore and generally miserable.

Even with all this I am pretty lucky. My son is healthy and happy, I have a wonderful family, amazing friends and a husband that loves me. Money can be tight and life can throw me curve balls all it wants I'm still blessed.

Friday, January 1, 2010

Resolutions

We welcomed 2010 just over 12 hours ago and that's given me some time to think about what I would like to work on this year.

Myself - I need to lose 40lbs to reach my healthy weight and I know I have it in me to do it. Just in the last 6 months I've lost 28lbs. So now I really need to pay attention to what I'm putting in my mouth and put myself first to make sure I get the exercise my body needs.

Lex - I need to focus on teaching him the words he needs in the ways he needs me to teach him. Lex's sensory problems means he doesn't get auditory information in they way I do so I'm always looking for new ways to teach him. I have to keep being an advocate for him when it comes to his therapies and looking for new ways to reach him.

Work - I have to stop looking at work as work and more as a place I go to help people. I work in a clinic so that isn't hard to imagine. I have to keep the smile on my face.

Family - I haven't always been the best daughter/sister/granddaughter or wife so I need to start seeing what I can do to help my family.