It’s about a little blonde boy…

Yesterday I attended a meeting at the State Capitol in support of Senate Bill 55 which would require insurance companies to cover a certain amount of autism treatment in Utah. I went to see if this bill would pass through this first committee for consideration on the senate floor next week. Celeste, my 17 year old daughter, came as an assignment for her Government class at school. We saved a seat for my husband, Chris, who ran in the door moments before the meeting started. We all sat there together, along with maybe 100 autism families and supporters, waiting…

We listened as Senator Shiozawa, a retired medical doctor, explained the desperate need for this bill to pass. We listened to questions from senators on the panel who would be deciding our fate on this day. Then we listened as members of the community spoke for and against SB55. The very last woman got up and said  “At the risk of being called mean, this bill is not really directly about the care for autistic children,” Wayman said. “It is about the control of private-sector insurance.”

To this woman I say this: You are not mean, but you are WRONG! SB55 is not about a mandate. It is not about republicans or democrats. It is not about politics. It is about a sweet little blonde boy named Bridger. He is my son. He has autism. His smile and laugh will intoxicate you. His tantrum in the grocery store will make you roll your eyes and walk quickly the other way feeling relieved you are not me. SB55 is about a 5, almost 6, year old boy who has not yet called me “mommy” because he cannot speak, however I hope from the deepest part of my soul that someday he will. THAT is what SB55 is about.

Although, along with…um…probably everyone, I have complained about the cost of insurance, I have never said, nor will I ever say “Don’t cover children with cancer, diabetes or down syndrome because my child doesn’t have it so I don’t want to pay for it.” Those children need and deserve insurance coverage for their treatment and SO.DOES.MINE!

To the senators and house representatives who have listened, who are concerned, who believe in this cause I say this: THANK YOU! THANK YOU! THANK YOU! I am grateful for all your efforts large and small. I have unexplainable gratitude for you and your leadership. If I have, at times, seemed disrespectful, angry or ungrateful, I am deeply sorry. That has never been my intention. That is not who I am. Please understand that it’s about passion. It’s about love. It’s about loyalty. It’s about a sweet little blonde boy with autism. I have to fight. I can’t stop until I have done all that I can for my child and you have done all that you can for my child and the rest of the 18,000 children in Utah with autism that you represent. That is when this momma bear will finally rest.

SB55 passed through the first committee and will be heard on the senate floor next week. I am thrilled, I am hopeful, and I am nervous that another year will pass without getting adequate treatment for my son…

“You, you may say , I’m a dreamer, but I’m not the only one, I hope some day you’ll join us, And the world will be as one“–John Lennon

By |February 8th, 2013|Autism, Life, Parenting|5 Comments|

The Five Dollar Autism Shoes…priceless…

I’ve said it before and I’ll probably say it again and again and again “Autism is hard. It’s hard on parents, it’s hard on families and it’s hard on siblings.” Do we love our Bridger more than words can ever express? Absolutely!!! But that doesn’t change the fact that it’s hard. I often wonder about the effect it has on our other kids. How do they truly, deeply feel about having a brother with autism? We don’t talk about it a ton because it’s just our life, it’s what we do. We deal. We love the kisses and the giggles and we survive the tantrums and the inconveniences. Last week I got a little glimpse into how our 12 year old, Sydney, feels about it when she went to a church activity on a regular ol’ Wednesday night.

After school Sydney’s big sister Celeste took her to Walmart to get a 5 dollar pair of plain white tennis shoes. She was taking them to her activity that night where they were planning on painting them. She was excited and I was too. I was wondering what they’d look like, if they’d turn out like she wanted, and if she’d actually wear them anywhere. I was not expecting her to return home with the most beautiful shoes I had ever laid eyes on.

The activity was to make a design on the shoes, any design, any color, anything… Well, our sweet Sydney designed her shoes with blue puzzle pieces. The puzzle piece is the symbol that represents autism. In our house it represents love and passionate support of our Bridger and other children like him. It represents our fight for better programs, insurance coverage and equal rights for a sweet little blonde boy that has stolen our hearts! And THAT, my friends, is what a 12 year old big sister painted on her shoes.

Those shoes said it all. They said “Even though autism is hard, I love you Bridger. I will always love you and accept you just the way you are. And I will fight with everything I have to help you reach your full potential and to create awareness and make others show you respect and dignity.” It was that night and every time afterward that I see her wear those shoes that this mommy is reminded that we are a family. We are united. We all feel the same way about Bridger. We stand behind him as one.

Thank you Sydney for painting your heart onto those shoes in the form of a blue puzzle piece. I’m so proud of you.

“Hold on, to me as we go. As we roll down this unfamiliar road, And although this wave is stringing us along, Just know you’re not alone, Cause I’m going to make this place your home” –Philip Phillips

Learning the art of squeezing blood from a turnip

A few years ago, in our life before autism, we had some friends whose son was diagnosed. They started an “in home program” that the mom ran like a business. She hired instructors, planned schedules, wrote paychecks, etc. We listened with compassion as our friends described this intense program and told us that their wealthy parents would fund the program and how blessed they felt that they had that kind of help. Chris and I literally had the conversation “What do normal people do if they have a child with autism? There’s no way we could afford 30k a year for that kind of program!”

Fast forward a couple years and we found ourselves in that exact situation. Crazy. The first year wasn’t horrible financially because we had our “emergency savings”. So, although it was scary and a little tight it was nothing compared to this last year. Two years of financially supporting a child with autism pushed us to the limit of not only our finances but our sanity as well.

About October of last year after attending The Bridge Concert with Chris http://www.mycrazylifeunplugged.com/the-bridge-concert/, I knew if we wanted to keep Bridger in evidence-based autism treatment we were going to have to get creative. I told Chris I wanted to have a benefit concert of our own. I knew it was a crazy idea and I’m pretty sure from his hesitant response that he agreed. Ha! But as usual, he rolled with it…

We talked to a longtime friend, we call him Smith, that Chris went to high school with. He had been playing with a band called The Lower Lights. He gave us a contact person and the rest is history…it didn’t come together easily but step by step it did eventually come together. There were issues with scheduling and other things and let’s be honest, I had no idea what I was doing! A couple of my friends came through for me, helping me every step of the way. It may be of interest to note that one of the friends was the one whose parents funded their son’s treatment. She paid it forward, to say the least…

I had no idea what to expect. I just knew that I would do anything and everything to get Bridger the help he needs, including ask people for money, our biggest nightmare! So, in the midst of advocating at the State Capitol, having a news story filmed on our struggles, getting Bridger to treatment and taking care of our other 3 children somehow, some way, we pulled together a benefit concert that was successful beyond our WILDEST imagination! I felt that if we raised enough money for one month of treatment it would be worth it. Friends, family and friends of friends and family gave generously and funded 4 months of treatment for Bridger. In March when we were out of money and contemplating pulling Bridger out of treatment we received enough money to pay his tuition for March through June and still be able to feed our family…a tender mercy from God through many kind people…

Feeling blessed is an understatement. The Lower Lights http://thelowerlights.bandcamp.com/  were so kind and gracious! They were amazing and it was a fun night! We saw people that we hadn’t seen in years. I wish there would have been time for me to talk with everyone that was there and to thank them personally. I sent out thank you notes but it didn’t feel like enough and to all those who quietly put tens, twenties, and even hundred dollar bills in the donation box. Bless you. Bless you. Bless you. There are no words…

“Oh I believe there are angels among us. Sent down to us from somewhere up above. They come to you and me in our darkest hours. To show us how to live, to teach us how to give. To guide us with the light of love.”–Alabama

By |August 2nd, 2012|Autism, Life, Parenting|3 Comments|

Happy Father’s Day Chris!

Today, on Father’s Day, I don’t want to go spitting rainbows out of my butt (I borrowed that from my dear friend Sam)! I mean my husband is pretty wonderful but he’s not perfect. He knows that, and if he forgets, I’m right there nagging him to do something the right way (translation = MY WAY!)

Being a Dad at our house has some unique challenges. With a 16 yr old, 12 yr old, a 5 yr old with autism and a stubborn 3 yr old it can be tricky and exhausting. What sets my husband apart from others is that although he’s not perfect, he is always ALWAYS trying so hard to be. Let me share some examples:

For Celeste’s 16th birthday Chris took her on a daddy/daughter date to The Tree Room at Sundance! It was an experience that I’m sure she will never forget. He didn’t stop there, just this last week he took her out for lunch on her day off of her new summer job. They ate sushi as he told her how special she is and how proud he is of her. Did he take away her teenage sadness, worries or questionable choices? No but he’s trying…

Then when Sydney went to camp for her first time this last week Chris volunteered to go up one night and help out so that he could have some special time with his baby girl. Let me add that Chris is NOT a camper but he would do anything for that little girl. As she ran up and hugged him with tears in her eyes when he arrived, did he ease all her past pain and heal all her future heartaches? No, but he is trying…

Bridger is the most time consuming and complicated. There are many examples here but one of my favorites:  Last month on a weekend, Chris decided he was taking both of his sons to the baseball game over at BYU. I was shocked because it is difficult for us to take Bridger out to events even when we’re double teaming him. I’m not brave enough to take both the boys very many places by myself.  I kept asking him if he was sure he wanted to do it and he didn’t give in. He HATES leaving Bridger out of father son outtings so this time, it was my 3 guys off to the ballgame. It’s impressive enough that my sons have a dad that wants to spend time with them, but taking a volatile autistic child out requires a very special Daddy. Just for the record, it went well. I was so proud of all of them. Did Chris heal Bridger’s autism or turn him into a typically developing child that day? Nope, but he’s trying…

And then there’s Noah. He is Chris’ shadow. I love seeing Noah pushing his “lawnmower” around the yard behind his Dad while he mows the lawn for real. I loved seeing Noah burst into tears when Chris left to go to Sydney’s camp. It was so sad but it also made it clear how much Noah loves his Daddy. Chris takes Noah to run errands with him every chance he gets. Does this special time together ensure that Noah will be a successful, confident, respectful young man? No, but he’s trying…

The bottom line is that if you came by our house you would hear yelling and impatience, laughing and crying, arguing and fun times. That’s us. We’re far from perfect, but I feel so very blessed that I married a man that is always trying to be the very best Dad he can be and I know for sure that he’ll never stop trying…

And let me just say to the amazing father of my children: It may be hard to believe, but in our frenzied life, I NOTICE! AND I.LOVE.YOU!!!

“And he did the best that he could, And I only hope when I have my own family, That everyday I see, A little more of my father in me.”–Keith Urban

An Untimely Good Bye

Soon after Bridger was conceived, Chris and I started talking about who we wanted to be our pediatrician. Chris told me he had a friend who was a pediatrician in Orem so it was perfect. That was the first I heard of Dr. Greg Nielsen. It was a good thing we talked about it early because when Bridger was born unexpectedly at 28 weeks gestation, Greg was one of our first calls.

It turned out that there was a picture on the wall of Greg at the Newborn Intensive Care Unit. He had worked with many children there and that confirmed our decision that he was the doctor for our precious son. I met Greg days after Bridger was born and I trusted him immediately. He was calm and assuring. He listened patiently and answered every single question of a freaked out mommy with care and concern. He was there in those crucial days when our son was riding the line between life and death…

I started calling Greg “Dr. Gregory Nielsen” to my husband and his siblings which they all thought was ridiculous since they had been childhood friends and they all called him “Greg”.  I thought it was funny, although I’m sure I was the only one:) I got to know him well over that first year. I had to haul my tiny baby who was still on oxygen to see Dr. Gregory Nielsen weekly, for a long time.

Greg was there to take Bridger off the oxygen at 6 months old, he was there when he had surgery to remove his extra fingers and toes at 9 months old, he was there at 2 and a half when Bridger was diagnosed with Autism.  He was there the day our second son Noah was born. He was there for many well baby checks over the last 5 years as well as a couple other hospital visits and many sicknesses. I trusted Greg so much and LOVED that he erred on the side of caution. He was SO smart and caring. The perfect combination for someone you trust your children’s health to.

Greg started scheduling our appointments longer because I had so many questions. With Bridger’s autism, I wanted to ask him everything. I realized in October at the last visit we had with him, that I must really be a nuisance with so many questions. I am so so happy that I took the time to write him a note about how much we appreciated him. I dropped it off at the office when I picked up a letter he wrote for us for an insurance appeal that was ready BEFORE THE DAY WAS OVER. I couldn’t believe it was done that fast! The guy really took care of us. He really did.

On April 29, 2012, Chris and I received a devastating email from my sister-in-law saying that Greg was ill and in the hospital and was not expected to make it. WHAT??? I couldn’t wrap my head around it. For the next few days I started crying every time I thought of this wonderful man and his family. I would find my husband alone in our room with swollen eyes. On Saturday March 3, 2012 as we were having our Party/Fundraiser for Bridger, ironically, our trusted pediatrician and dear friend was taking his last breaths.

My husband and I attended Greg’s funeral. As you can imagine, we parked way down the street as the parking lot and adjacent streets were jam packed. It made me think of sometimes when people pass away who didn’t lead a very good life, but are still made out to be saints after they’re gone, well this is certainly not the case here. This man was among the best. He was truly an example of love, compassion, hard work and service. No matter how much good is said about him, it doesn’t do him justice.

We found out at the funeral that in 2007 when Greg was helping us keep our little Bridger alive, he had a newborn at home himself.  I also found out the devastating news that we were actually not his favorites as I had previously thought. He always treated us so well that I thought it was because he and Chris were lifelong friends but it turns out that Greg made everyone feel special. It is like when you ask all the children in a family which one is dad’s favorite and they all reply that THEY are. Greg was like that dad. We all think we were his favorite:)

I cried to the receptionist on the phone as I rescheduled Bridger’s 5 year old well check with someone else. I cried on the way to our new doctor. I cry now as I think of making decisions for my sons as they grow up without the help and advice of Dr. Gregory Nielsen. He has set the bar high. I know that as my children grow I will continue to ask myself “what would Greg advise us to do?”

We are so blessed to have been touched by this brilliant, loving, kind man. Thank you to his wife and beautiful children for sharing him with us. You will always be in our hearts and in our prayers.

“What greater gift dost thou bestow, What greater goodness can we know, Than Christlike friends, whose gentle ways, Strengthen our faith , enrich our days. When such a friend from us departs, We hold forever in our hearts, A sweet and hallowed memory, Bringing us nearer, Lord, to thee.” –Karen Lynn Davidson

By |April 15th, 2012|Autism, Life, Parenting|3 Comments|