Sunday, May 31, 2009

Grandma and Grandpa's Visit

We had a wonderful weekend with Grandma and Grandpa Howerton.

Thanks for coming to Iowa. WE miss you already!



Friday, May 29, 2009

Botanical Field Trip

It is that time of year, when each of the kids have a lot of fun things with school.
Today, Beans had her kindergarten program for all the parents and Chan had a field trip to the Botanical Center just across the river.
The school was very accommodating and wanted the parents to be involved, so they scheduled both of these events at the same time!
C and I decided that we would divide and conquer so he stayed with Beans and watched her program and I went with 2 classes of first graders to the see all the plants.
Next week Chan has his first grade program on the same day that Beans has her field trip- I am still trying to figure out the details on that one!

It was a beautiful, hot day today and perfect for going outside. Except that we were inside green houses and the humidity was worse inside than it was out.

KD came with me to see the plants and she did very well. I dressed her in a tropical themed dress and she matched the scenery perfectly. She sat in her stroller for almost 2 hours while I chaperoned. I think she was getting so many kids picking at her that it must have been entertaining.

Beans reviewed the pictures with me from today and she asked me if we went to the jungle today. HaHa, I love kids!

What was I thinking?


I asked Chan if I could take his picture and he chose this cactus plant to stand in front of for a pose.


The 3 musketeer's (as their teacher calls them) with their newly planted starters.

Art project

KD at the playground after the botanical center.

To My Boys, Love Daddy

I found this today, and I hope it adequately shares the difficulties of Autism.

You hold out your hand to me
you have that look in your eyes
I wish I could understand you
but it takes so many tries

I know that you're frustrated
you wish that you could say
everything thats bothering you
but you can't find the way

I understand why your angry
I'd be angry too
It must be so hard
with no one to understand you.

I try to remember "simple's best"
when I talk to you
I try to keep my words short
so you don't get confused

I try to show you pictures
in case you can't find the words
no matter how you communicate
You will always be heard

I may not understand you
But you'll always have my hand
to help you and to guide you
through things you don't understand

I wish the world could see you
for who you really are
you're not your diagnosis
you're my little star...

People judge you 'cuz you're special
'cuz you have your little fits
'cuz you don't like certain textures
cuz you can't deal with it

I wonder how it makes them feel
to judge a child so young?
How can they blame your problems on you?
do they think you're like this for fun?

Yes, you hurt yourself cuz it feels good
you scream and have a fit
you bang your head on the wall,
you're just having fun with it...

maybe thats the way they think
but they're just all naive
exiled by the community
they all want you to leave

they've called you names of evil
for being the way you are
they say that you're the devil
those names aren't going far

Baby, you're not evil
you're not doing anything wrong
you adjust to what you can
and we keep going on

What you are is Autistic
you're a special little girl
For God loved you so much
He gave you your own little world

The one you withdraw to
when life's getting to be too much
when you feel you need a time out
when you can't handle a certain touch

And though you're in that world
most the day and night
sometimes I see a flicker
its the real you trying to fight

Trying to come out and SEE me
trying to show you care
but don't worry about that baby
I know the real you is there

God has granted me patience
I asked for it in prayer
I look past the shell of you
I look past your lost stare

One day you will greet me
and say "mom, I've been inside...
I know you never gave up on me,
but that is no surprise...

For God has told me many times
that you would be the one,
who never gave up hope for me
and would fight until the fight was done"

Until that day comes around,
I'll be right with you
one day you'll open your eyes

We are truly blessed to have not one, but two unique and talented boys who, while they will have significant challenges ahead of them, are loving, caring, energetic and amazing. The Lord blessed me as their Father, the greatest blessing of my life.

AND - to my wife who wrote such a nice post about me (below - read it, I am amazing), you will never know how lucky I am to have found you and that as we take this journey together how thankful I am that I have the opportunity to take it with you.

I appreciate that you pick up the phone 20 times a day - all I want is to hear your voice. I appreciate that you don't mind that I leave clothes around the house during a 10 game home stand in which I may only see the kids awake for 10 minutes during that week. Most of all, I appreciate that you wait up for me on those nights and we are able to spend a few minutes together during the hectic season in which I work. I know you understand my job and I appreciate that. I also know you don't always like it - and I want you to know that I understand that too.

I share this with the world because no matter how close you are to our family or my wife, you probably don't see how amazing she is on a daily basis. During the baseball season she truly is a single mother of four, and she does it with the most love and appreciation for the four spirits that the Lord has trusted us with.

I love you.

Now - seriously, read about me - I am fantastic. It's right down there, below this one, just grab your mouse and scroll. What are you waiting for. Jeez.

Tuesday, May 26, 2009

my husband

It is a fact that I rarely share how much in love with my husband I am.
In fact I rarely share my appreciation for him and all that he does not just for our family, or for me, but for others.
I choose to wear my rose colored glasses when he leaves his clothes at every location in the house other than the closet or the hamper.
I choose to answer the phone twenty times a day even though I know he is just calling to remind me he loves me.
I choose to stay up until way past my bedtime just so I can say goodnight to him.
and
I am rarely energized enough to hassle with the kids and cuddle on the couch watching movies with him.

Yesterday we got to watch a movie and cuddle on the couch (sort of) and it was so nice.
Yes, the kids were climbing all over us, bouncing balls in front of the television and asking for something to drink/eat every ten minutes.
But it was blissful.
My best friend at the complete opposite end of the couch surrounded by 30 little toes and 3o little fingers.
Just having him in the same room for more than 10 minutes was nice.

Baseball season is long hours and I feel robbed of time as does he, but it provides meals on the table, a roof over head and yada yada yada.

I am thankful for these things. I am so lucky to have a great and loving husband, that supports me in all that I do. Tells me how beautiful I am even when I do not feel like it and is always willing to offer me a break no matter how long, if he is able.

I love you babe- for every reason listed above and for no reason at all!!

Saturday, May 23, 2009

Another Week

It is day 9 of a 10 day home stand and the tribe is restless.
The chief in charge is tired and is having a hard time thinking these 4 kids are very cute right now.
The kindness between them is diminishing and I am afraid they have forgotten what the word sharing even means.

It is weeks like this that makes Baseball season hard. We knew there would be weeks like this and I try so hard to not complain, but I think if I do, I just might be able to feel better and endure the chaos a little bit longer.

In better news, We are expecting the in-laws for a visit this next weekend. Cannot wait! It will be great to have family here. Maybe KD will decide to take more than 3 steps at a time and show off her new skills to Grandma and Grandpa Howerton!

Here's to a better week!!






Wednesday, May 20, 2009

The best part

So I successfully made it through my day. I took Nooshie to his first day of school this morning and there was very little crying (by me).
It took every ounce of self control to not call the school twenty times and check in on him.
I only called once.
They said he was doing just fine and he fit right in. I knew he would, I was only calling for my benefit.

The house was a little too quite for me and I couldn't wait to hold my little Nooshie this afternoon.
The time to pick him up could not come soon enough.
We were 8 minutes early.

I held him for at least 30 minutes once we were home, just squeezing and kissing him. He finally told me he wanted to play outside so I followed him.

The best part was definitely the part when he came home. A piece of me was missing. Now I am whole again. :)

Monday, May 18, 2009

Found!

It hit me today.

It is something that I have always assumed I was missing. The part of a mother that misses her children terribly when you send them off to school. I assumed that I was born without that feeling as I always felt relief, joy and utter relaxation when I would send Chan and Beans off to school. I would count down the days until Spring break was over and I could send them BACK. I would dread the days they stayed home "sick". I don't mind the days they are actually sick, because I do feel bad for them and I genuinely loved how polite, loving and kind they were. It was every other day, I dreaded. 3 o'clock came to soon and Christmas break was too long. What was wrong with me? What kind of a mother am I if I can't wait to get my kids out the door?

I must be broken.

Today was out of routine. Daddy had to leave for work before the roosters crow and so it was left up to me.
I forgot.
I didn't set an alarm, and the only other alarm I rely on is my cell phone ringing. It was still on vibrate from church yesterday, so uh- Beans finally brought it to me 20 minutes before we are supposed to be leaving to take them to school. I'd like to say things were hectic and chaotic. But they were not. I was calm. We even left the house 8 minutes early, and we didn't forget to brush our teeth. Even more amazing, I was dressed. This is a HUGE accomplishment for me, but it is still not the reason for this really long post.

I realized that as I was dropping them off at the front of the school, that I actually felt a tinge of "I don't want to" I wanted to keep them home today. Talk with them, have them read to me, cuddle on the couch, squeeze them a trillion times and maybe jump on the trampoline with them. I didn't want my kids to go to school. They are my kids and I am missing out on time with them by sending them away 5 days a week until three in the afternoon.
I have been robbed! Where was this maternal instinct years ago??
I am not sure if I am feeling this way because Nooshie is getting ready to start school this week and I REALLY feel that way with him, or if I have accomplished something spectacular?
I am crushed inside and seriously second guessing my decision to let Noosh go to school. He is only two. Only TWO! He will now be in school until he graduates high school. I really feel robbed about this one. Maybe I'm just being selfish. I have expressed my feelings to several people lately and everyone of them has the wisdom I needed to hear. It is better for him and I am doing the right thing. With the early intervention we may be able to avoid some of the issues we have had to face with Chan. I know, I know. I get it. I don't want to, but I do.
I just want to keep spending my days with my kids. Why did it take so long for me to feel this way? I love them so very much and now instead of worrying what I am going to do with them over summer break, I am already feeling like it isn't long enough.

I'm just venting. Getting it off my chest. It really pains me to take Noosh to school and seriously I just cry about it. I am going to miss my baby. I am trying to see the positive side of this. KD will get a great deal of my attention and we can plan special things during the day, just the two of us. I know I will not take this for granted. They are all growing up so fast. I need a pause button.

So turns out I DO have it. I'm not as different as any other mother, just in a different situation. It may have taken me longer to find it- but its FOUND!!




Sunday, May 17, 2009

Totally Worth it!



With a face as cute as this and a personality as awesome as his- you just have to smile!
WE love you Noosh!!

Saturday, May 16, 2009

This and That

This weekend (which is still happening) has been a lot of fun. The relaxing kind of fun. The best kind in my opinion.


KD turned one!!
We celebrated with some yummy burgers from the big red Robin and a blue and green cake picked out by Nooshie. Nothing fancy- just laid back and easy going.



She hasn't decided that she is ready to walk yet, but she did decide to stand up from the sitting position all on her own and then stand unassisted for the first time ever- Progress!!

Great company was also involved. My little brother stopped by for a quick visit on his way back to Washington State from Wisconsin. We had a great time visiting and yep, you guessed it- relaxing. So nice to just talk and chill on the couch while the children jumped around and soaked him all up.


And as if this wasn't enough- our favorite friends came over and played all day Saturday. Okay, so not ALL day, but it was still fun.

We also received a surprise package or two in the mail. Have I ever mentioned how much we love packages?!!
Nooshie received another awesome shirt and it fits him perfectly. Both in size and personality!!

and yes, he does have it on backwards. He put it on all by himself :)

That's pretty much it, just had to share. Sending our love to our families! We miss you all and hope to see you soon.

Friday, May 15, 2009

Monday, May 11, 2009

Meet Mrs. Nielsen

I stumbled across an amazing blog last summer and fell in love. I feel as though I knew this most amazing mother and wife and yet I have never personally met her. The love letters between her and her Mr. Nielsen were like reading a sappy love story. She is the kind of person you envy and strive to be like. She's creative, inventive, loving, fun, and oh so talented. Her heart is so soft and kind and she always sees life and it's trials as glass half full.
Then last August, her and her beloved husband were in a plane crash. Their friend and pilot did not survive. Mr. Nielsen suffered burns on 30% of his body and she suffered burns on 80%. They were rushed to a hospital in Arizona and were not given great odds. They were kept in medical induced coma's for about 3 months. All the while, their families stepped in and took care of their children. They visited them often and prayed fervently. The community wrapped their arms around them and rallied for their support and recovery.

Mrs. Nielsen became even more beautiful as her life was made oh so public. She won awards for the way she decorated her house, her blog was upped 100% to be more public. Her readership grew and grew. Her sister's took over the postings on her NOW very popular blog as they re-posted some very lovely posts. The world was wrapped in this ever growing love story and I couldn't help but ache as this beautiful, talented mother and wife laid clinging to life. Many fundraisers were set up for the family and a separate blog that kept us updated on the recovery.

This last holiday season, this 20 something, mother of four was taken out of her medical induced coma and then later transferred to a hospital closer to home. Mr. Nielsen also survived and was now in physical therapy. Mr. Nielsen never wavered, he stood by his wife every chance he got. Stefanie was soon back at home with her family her children and parents included. She attends PT often and still has surgeries to help with her recovering body. She has been blogging again for the past few months and every word is like eating a delicious piece of chocolate cake. It flows, it's funny, and you can read the beauty she still feels in life. Her looks may have changed since the crash, but her heart and talents have grown even more.
I enjoy this read. It is my favorite love story. I yearn for her updates and all that she shares. She still looks at life, although having changed a hundred fold, as the greatest thing in the world.
If only the world could be half as amazing as she is. She has helped me realize the blessings I have even when I take them for granted.
If you are looking for yet another blog to read and stay up until all hours of the night, then check it out when you can, you too may fall in love with Mrs. Nielsen. NieNie

Sunday, May 10, 2009

Thank you



Thank you
for your kind words.

for your prayers.

For the glance across the room to let us know you are thinking of us.

For the hug, even if I shrugged it off.

For the extra helping hand.

For the listening ear.

For the optimism.

For the love.


Thank you to all our friends and family that support us and have offered their support, kind words to lift us up and keep us looking at the big picture.
Thank you for praying for us- we truly recognize the hand of God in our life and know that we have friends and family like you just for moments in life like this.

We are blessed.

We love you all!


Saturday, May 9, 2009

Better than Chocolate

Without fail, whenever I am feeling sorry for myself, there are two things that ALWAYS cheer me up. Maybe not better than chocolate, but it's close.

1. Music- love lyrics that inspire and remind you that there is light at the end of the tunnel

and

2. Taking pictures of four very beautiful kids :)

Always brings a smile to my face and changes my mood.

Today, I took the kids to a local, almost abandoned monument park just so I could take pictures. They had a blast climbing and running around and I had a lot of fun taking pictures of it.



They were playing hide and go seek and since I was taking pictures of Beans and Nooshie hiding, I may have made them found sooner than later- oops :)















The Climb, Miley Cyrus ( I have this loaded in at number one on the playlist)

I can almost see it.
That dream I'm dreaming.
but there's a voice inside of my head
saying you'll never reach it.
Every step I'm taking
Every move I make feels lost with no direction.
My faith is shaken.
But I, I gotta keep trying
Gotta keep my head held high.

There's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be an uphill battle
Sometimes I'm gonna have to lose
Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb

The struggles I'm facing.
The changes I'm taking.
Sometimes might knock me down, but
No I'm not breaking.
I may not know it,
but these are the moments that
I'm gonna remember most
I've just gotta keep going, and
I gotta be strong
Just keep pushing on

Keep on moving
Keep climbing
Keep the faith baby
It's all about the climb
Keep the faith, keep your faith


Friday, May 8, 2009

Autism Sucks



There are no two ways about it. Autism sucks.

It sneaks up on unsuspecting children like a thief in the dead of night and steals their childhood. It creates so much havoc in homes that more than 75% of happily married couples who have an autistic child end up in divorce. When the diagnosis comes, you know that your child will be treated differently forever. Special classes, therapy sessions, having to purchase a special brand of socks to avoid the morning confrontation that comes with having to wear shoes and socks that are not comfortable for the child because of his sensory issues. There are days that jeans are fine and others that jeans cause so much agony that you just want to throw them all away.

Your life must be a total routine where the simplest change in plans can cause an outburst that will last all morning. and never- I mean never - tell an autistic child that you are going to do something and then not do it. They remember everything.


Yesterday was day # 1. The first day following a diagnosis that we all thought was coming because of recent activity, but one that you hope never happens. It was the first day that my youngest son was taken from me. He is still here, but he is not the same. The beautiful blue eyes are empty. The number of words he was speaking for his age bordered on gifted, and now each day - like the 14 previous to it - he is regressing. He has become more emotional and less engaged. He is a different child, and I want the old one back.

For weeks my wife has been sharing with me the signs of his regression. At first we thought it was learned behavior and he was copying the things that he sees in Chandler. As time went on, and we took more and more notes, it was clear that whatever the trigger point was for Spencer - it had happened and our lives would never be the same again.

I have been working with Autism advocacy groups over the past few weeks, joining the board of two and working closely with another to ensure that parents who are about to have their First Day with Autism have the resources necessary to provide the best care for their child. I always thought I was doing this because of the inspiration that Chandler has always provided me. Now he has a teammate.

My wife is an absolute saint. She has an unwavering faith that I wish I could duplicate. She has never once asked "why us?", she just went to work to provide the best course of treatment for Spencer and has already lined up therapy and pre-school. I could not have asked for a better companion to take this journey with, she makes me stronger. Her biggest challenge is not our children with Autism, it's being married to me and she handles it with style and grace. She was sent to me, I have no doubt about that and it was the best gift I could have ever received.

Day # 1 was horrible. Day 2 is a little better, but I am still struggling. I will get over this - I have to for the two children who up until yesterday I thought the only thing I gave them was blue eyes.

We can either let Autism define who we are, or redefine Autism. I choose the latter. You see, my children are going to beat this. I am going to get Spencer back, and Chandler is going to have a normal life. I will not stop until this happens. I will not rest until progress is made and I will make sure that our children receive the best possible care, no matter the cost or location. They were placed in our care for a reason, and anything less would be letting them down - and I will not allow that to happen. I'm done crying (probably not, but soon), I'm done feeling sorry for myself. I'm done trying to find someone to blame for taking the most precious thing from me.

Today is day # 1 for some parent, tomorrow will be day one for another. Each child deserves the best possible treatment and access to resources. Each parent deserves access to the same resources and alone time with their spouse to ensure that they remain united in this lifelong fight.

Autism Sucks. So we're going to beat it - together.

Wednesday, May 6, 2009

Autism times two


To whom it may concern,
This is how my dad used to always start all of his letters to our school when he was writing us an excuse for missing any days or time. I have always really wondered if "whom" appreciated the formality or if they just knew that the person that wrote the letter really had no idea who was going to be reading it and really if they even cared how the letter was addressed.

So, I write this post To whom it may concern. I have to say that I am deeply saddened. I spend the majority of my days watching my beautiful little two year old son drift away from the adorable, happy go lucky, go with the flow kind of smile, to a blank stare. I watch in horror as I recognize him regress in speech, motor skills and social, emotional ability. I watch with my husband as we try to cherish each day, fully understanding that good days will be rare and that from here on out we will only see glimpses of the sweet boy we used to know. The tantrums, the meltdowns, the anger will overcome him and occasionally we will be granted a hug. A warm smile, and a loving little child. I am mad as hell and scared at the same time.

We didn't sign up for this.
We intend to fight for him and give him the best advantages possible. We will continue our move forward with support groups, therapy and early intervention. We will work hard to save what we can. We will not let you take another little boy from us while we just sit here and watch it happen.


We already miss our son and we weep with the knowledge that you have already taken a piece of him. You have picked the wrong family! We were built with strength and perseverance. You don't stand a chance and I hope you know that this little boy means the world to us!
I think it is only fair that you understand that you will lose this battle. We work hard for what we have and we do not take it lightly when something we cherish is being taken from us.

Signed,
The Mother that intends to fight until we win


Today was the day we knew we needed to have, but also the day you wish you didn't have to have.
Today, Nooshie was diagnosed as a child on the Autism spectrum. They are leaning towards Aspergers, just like his big brother, but they would like to evaluate him some more.
The Early Childhood Special Education Autism Resource Team will be placing him in a FULL TIME early intervention education program at the local center. He will attend 5 days a week, 7 hours a day. He will be challenged here. The goal is to keep him fully engaged the entire day so we do not continue to lose him. He will attend every day even through the summer, then in the fall he will be placed in a district program since he will be three years old.
He will also have an occupational therapist that will work with him weekly at the center to help with his sensory disorder.

We were also told that he is on the Obsessive Compulsive Disorder scale and that they will address this too. He will begin seeing the same psychologist as Chan and it is at that point he will be given the official label and a determination of where he falls on the spectrum.

Devastation is the only word I can think of to describe our feelings about this and yet it does not seem strong enough to handle all of our emotions. We feel as though we have been defeated and that we have already lost the son we know, although we have not.
There are some feelings and a small desire to give up and why do I even bother, but we know that when we are done mourning and feeling sorry for ourselves that we will fight more than we have ever fought. I do not think this would be half as hard to take if we had not already been through this. The first time we didn't realize what was happening and what the end result would be. This time we do.

I love our son and I understand that we are all given trials that we can handle, but in my immediate dismay, I am angry and frustrated. I want to blame our Heavenly Father and ask him why? Why would we be given two wonderful sons with such a difficult task to live with? Why would we have another when we are already overwhelmed with one?
I know the day will come when we might possibly see the blessings, but today- we mourn. Today, I hold our son and cry. I feel as though we have been defeated. I crumble inside and try to maintain my confidence on the outside.

I want a do over.