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.

Our Baby is ONE!!

Happy Birthday KD!!

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

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!

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

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.

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.