21 02, 2012

Bridger’s Birthday Event/Fundraiser

By |February 21st, 2012|Autism, Life, Parenting|1 Comment|

Okay Folks! We’re swallowing our pride and asking for help! Bridger turns 5 at the end of March. For his birthday we’re having a party and inviting everyone to join us at 7pm on March 3rd at a church cultural hall down the street to celebrate him! A local band THE LOWER LIGHTS (http://thelowerlights.bandcamp.com/album/the-lower-lights-a-hymn-revival) will be performing and we are so grateful to them for participating in our cause. There is no cost. In lieu of gifts, we are accepting donations for Bridger’s autism treatment. Without help we don’t know how much longer we can keep him at his expensive school. If you’re not able to make it to the event but would like to help us out, you can click the donate button here and contribute to this great cause. I would like to give a huge shout out to Focus Design (http://focusonline.com/ ) for designing and donating the incredible invitations! Thanks to all of you for giving us your love and support! It means more than words could ever express!!!

This little light of mine, I’m gonna let it shine. This little light of mine, I’m gonna let it shine, let it shine, let it shine, let it shine.”—Covered by The Lower Lights

20 02, 2012

Lights! Camera! Action!

By |February 20th, 2012|Autism, Life, Parenting|0 Comments|

A local news station visited our home on Friday night. I can officially say that I will NEVER do a reality tv show. As much as I love to watch them, I’m sure I wouldn’t enjoy being on one.

We originally said we would talk to the news because we were advocating for House Bill 69. We were all in and so even though this was WAY out of our comfort zone we said we’d do it. After rescheduling a couple times it turned out that they didn’t come until AFTER the bill was dead so we weren’t sure we wanted to get in the middle of a political firestorm since the autism community seems a bit divided on the status of House Bill 272. Ultimately, we decided that we had to shine our little light on autism and help bring awareness to our joys and challenges.

I scrubbed down the house as best I could and anxiously awaited their arrival. Sydney, being 11 was super excited, and the rest of the family was well, just normal about it I guess. Lol. While the reporter was here we were showing them how much Bridger likes his spinning chair and saying that he can spin for hours without it bothering him. Of course, although he’s never ever done it before he puked right on camera! Bahahaha…oh boy…Near the end of our time with them Celeste called Noah out for “tooting” and he got embarrassed and had a total meltdown which sparked Bridger to get upset and start crying as well.  As the reporter and camera man were leaving both boys were having full on come aparts…oh well…welcome to our world…

Now we wait. We have no idea what parts of what we said they will air. It’s a little stressful hoping you said all the right things, something that might make a difference. I guess we’ll see sometime this week because they told us that they always air an autism story during sweeps because they get so many viewers. Um…hello Utah Legislators! Doesn’t at least that little tidbit of knowledge tell you how important this issue is???

“are you ready for? are you ready for? are you ready for lights camera action
are you ready for? are you ready for? are you ready for lights camera action”–VFactory

19 02, 2012

United We Stand!

By |February 19th, 2012|Autism, Life, Parenting|0 Comments|

Chris and I have never been too interested in local politics until this year. House Bill 69 was drafted in Utah to mandate insurance companies to cover autism treatment. This was of great interest to us, to say the least.

Imagine our surprise two and half years ago, when our little boy was diagnosed with autism and we found out that our insurance (which we have been paying a premium on for years) wouldn’t pay any part of the treatment that research proves he needs! The shock continued as we found out that he needed in excess of 20k a year for the bare minimum of treatment! Where in the world we’re we going to come up with an extra 20-30 Grand a year???

In the last two and a half years we have worked our butts off (Chris works full time and I work part time) taking extra side jobs, applying for grants, and now were even resorting our prideful selves to doing a fundraiser to raise money for Bridger’s treatment. We have now depleted our sizable “emergency” savings and are struggling to make it month to month to keep our son in the treatment that he needs and still be able to meet the needs of our other children and household.

When we heard that there was legislation that might be able to lighten our burden we were immediately on board. We were hopeful! We were excited! We joined the grassroots movement and started attending meetings and began meeting many wonderful, amazing people in the autism community in Utah, some with burdens even more crippling than our own.

This is when we learned what living in a Republican State really means. It means that you can sit in a meeting with a House Representative or State Senator (just kidding our senator MARGARET DAYTON refused to meet with us) and tell him/her your “story” and have that person tear up and say how sorry they are for your struggle and then let you know that a mandate won’t pass here and that there’s no money in the budget so you’re on your own. That was our experience. Shocking, depressing, but most of all sad. It left me feeling so alone in this already devastating journey.

Although it looked bleak at times we didn’t give up. We knew we had to fight. We knew our little 4 year old Bridger’s bright smile was worth the fight! We sent Christmas Letters detailing our struggle to all our State Representatives. We sent emails, we made phone calls, we went to the Capitol Building when the session started. Turns out that it has all come to a heartbreaking end. The bill is dead. They tell us it will not pass.

In comes House Bill 272. I guess this is the compromise. There is a division in the autism community regarding this bill. From our understanding, this bill will benefit only children with autism from ages 2-6, mostly children covered by Medicaid. I’m all for ANY child getting help with autism but what about the rest of the kids. What about us? We’re not poor enough for Medicaid and we’re not rich enough to afford treatment so what happens to our little guy and our family??? It makes me cry every time I think about it. Whether or not this legislation passes, we are still at square one. The struggle will continue. We will not quit though. We cannot quit. We will still keep fighting to give our little Bridger the best possible outcome in his life. Whether he ever speaks a word or whether he is someday able to live independently we will fight for him to the bitter end!!!

“When you try your best, but you don’t succeed. When you get what you want, but not what you need. When you feel so tired, but you can’t sleep. Stuck in reverse. And the tears come streaming down your face.When you lose something you can’t replace. When you love someone, but it goes to waste. Could it be worse? Lights will guide you home. And ignite your bones. And I will try to fix you.”

12 02, 2012

Winter Blues

By |February 12th, 2012|Autism, Life, Parenting|0 Comments|

We have literally had someone sick at our house for over 2 weeks now. Bridger seems to be developing an annual RSV Virus at the beginning of every February.  Last year he was in the hospital for several days but this year we recognized the signs and we’re able to fend off a hospital stay, although I was pretty worried for a couple days. He missed a week of school. This is so sad to say but we kind of enjoy Bridger when he’s sick because he’ll actually snuggle and sit in the same place for more than 30 seconds. His sisters like to hang out with him and it’s nice to be able to get things done and know he’s not causing mischief while I’m trying to make dinner,etc. However, it was such a relief when he started feeling better again.

Celeste and Sydney caught the cold part of the illness but they were troopers and still went to school every day. Such dedication! I also plowed through the stuffy nose and hacking cough and made it to work as scheduled. The only good part of having the cold is that I can’t smell poopy diapers! Sorry to anyone who has been in our stinky path. Chris came home one night gagging because it stunk so bad in our poopy house. Ha! Oops!

So, last night after a typical Saturday, Noah came into the kitchen for dinner and suddenly puked all over the floor!?! It was very sad. This was actually the first time he has been really sick as a big boy. He spent the rest of the night throwing up every little sip of liquid he drank, including children’s Tylenol and sick juice (AKA Pedialyte).  I slept with him on the couch. Chris offered but even though I’m still not feeling that great myself I couldn’t go up and go to bed while my baby was so sick. He kept waking up begging for more to drink water, juice, chocolate milk. Uh. No. Every time I gave him a sip he’d throw up a few minutes later. At 3am he woke me up and said “Momma, I want some pizza!” Needless to say, he got a little sip of water instead of pizza! Finally at 5am I went and got Chris and switched places. I was exhausted. Now it’s Sunday afternoon and Noah is resting peacefully on the couch and Chris is upstairs napping. I hope the worst of it is over! I’m sick of sickness. Bring on the spring!

“Sick of it all, Sick of it all. We will not follow. Sick of it all, Sick of it all. They don’t understand how Sick we are, Sick we are…”–Evanescence

12 02, 2012

Mad Science

By |February 12th, 2012|Blended Family, Life, Parenting|0 Comments|

Sydney is the opposite of a procrastinator. Maybe we could call her a bit of a perfectionist. She’s so responsible for her age. She started working on her Science Project in December. Her idea actually came from Celeste because she had to do a project for Chemistry too. Celeste’s idea eventually changed a lot but Sydney stuck with the original. She, well we, got 4 small house plants and fed them with four different liquids. She used water, soda, diet soda and Monavie (an acai berry health drink). She thought the Monavie plant would flourish but in the end her “hypothesis” was wrong. The plant with good ole water did the best. Sydney won 3rd place in her class and will take her project to District in a couple weeks! I’m so proud of my little hard worker!!!

“Plastic tubes and pots and pans, Bits and pieces and Magic from the hand, We’re makin’ Weird science…”—Oingo Boingo