7 02, 2017

An open letter to our new US Secretary of Education

By |February 7th, 2017|Autism, Blended Family, Life, Parenting|2 Comments|

Dear Betsy DeVos,

You scare me. It’s true, you scare the hell out of me! You may or may not care, I don’t know you so I’m not going to assume either way. I’m just an ordinary mom. I quit my job as a juvenile probation officer a few months ago for several reasons but most of all to chase the idea of a better education and services for our son with severe autism. We left behind my two step-daughters and moved to another state in search of better circumstances for our disabled child. It was a tough decision, one of the toughest of my life thus far. We are blessed that we had this option, many people don’t.

To be honest I’ve never known who the US Education Secretary has been before. I’ve never paid attention but with this political climate it’s been hard to avoid. I consider myself a left-leaning conservative so for the last year I’ve watched in shock as Trump’s America has unfolded. I’ve tried to wrap my head around the feelings of all sides and tried to understand. I’ve tried to sort out truth from fiction. Then you came along.

I watched in horror as you struggled to answer questions regarding IDEA,  the Individuals with Disabilities Education Act. It’s a federal law ensuring a fair and equal education for children with disabilities throughout the nation. I listened. I waited. Then you said protection for disabled children should be left up to the states. Wait. What??? I hope that since you made that ridiculous statement you have thought that through. What kind of person thinks that giving a quality education to special needs kids is negotiable??? I hope you have recognized that taking away federal support from our disabled children, from my disabled son, would not only be un-American but also inhumane!!!

Look. I do everything I can for my son financially, emotionally, physically. I’m not looking for a handout. As a parent, I have literally given all I have to help my sweet boy and my family have a good life but there’s no way we can do it alone. It’s too much. I know that there are people out there that expect the parents of special needs kids to just handle their business and there’s probably not much I can say to change their minds. If they haven’t walked in my shoes they may never truly understand.  I just hope that you are not one of those people Betsy. I PRAY that you are not one of them because we need you in our corner and right now I’m scared. I know that you have supporters that say your heart is in the right place. You have no idea how much I hope they are right and that you are prepared to FIGHT to make sure ALL children in our country get an excellent education. I will be watching. I will be hoping. I will be fighting.

My son is just one story Mrs. DeVos. We’re just one family. I don’t speak for everyone, but as of today YOU do. The future of our children is in your hands. My sweet son’s future is in your hands. PLEASE, please don’t let him down.

Sincerely,
Bridger’s Mom

“We will fight, not out of spite, For someone must stand up for what’s right, Cause where there’s a man who has no voice, There ours shall go singing, My hands are small, I know, But they’re not yours they are my own, But they’re not yours they are my own, And I am never broken, In the end only kindness matters, I will get down on my knees and I will pray…”  –Jewel

25 03, 2014

7 Candles Burning

By |March 25th, 2014|Autism, Blended Family, Life, Parenting|0 Comments|

photo (8)Tonight as I watched 7 candles flicker on Bridger’s birthday cake the war of emotions in my heart was intense. Probably like most moms, my kid’s birthdays are always bitter-sweet. Watching my oldest turn 18 was so exciting yet painful as we faced the push and pull of her struggle for independence. Pretty soon I’ll be watching my 13 year old turn 14 with sparkling eyes full of her dreams but suddenly talking about boys and driving. Yikes! And my baby turned 5 not long ago. It’s incredible watching him grow and learn. He will be in kindergarten next year…exciting and sad at the same time. But watching my 6 year old autistic, sweetie pie turn 7 provoked a storm of feelings in me, feelings of hope, fear, love, sadness and many other things that felt heavy.

The progress that Bridger has made over the last 7 years has been amazing…more than amazing. We have been seriously watching a miracle daily. He went from a fragile 2 pounder to a giant presence full of life and love and joy and strength and complex beauty. So why do “they” keep limiting his potential by saying that you can only treat autism at an early age? From the beginning I was aware of the looming age of 7, wondering what that would mean for us, if the progress would just stop, what life would look like after that deadline? We have come so far but still have so far to go, much too far to put a time limit on my sweet boy’s potential!DSC00328

It is here now. As the candles burned we began knocking on the door, waiting for it to open so that we can peer inside and see what our son’s future will be. Even local politicians confirmed our greatest fear this year by voting for bills that treat children only until the age of 7 (HB88) and the age of 9 (SB57). The message was loud and clear and in my opinion very short sighted because when all is said and done, it doesn’t matter what “they” say. Nothing will stop us. Not politicians. Not research. Not age. Not money. We will keep moving forward. I just know that Bridger will continue to progress to heights that we have not even imagined for him yet. His spirit and determination won’t end because we added a candle to his cake, nor will ours.

After Bridger’s dad and brother helped him blow out the candles while I made a silent wish, we all ate some cake (Bridger just ate the candy off of it which was strategically placed there because his mommy knows he doesn’t like cake). Then we went outside with our big 7 year old. As he jumped on his brand, new trampoline his giggles and squeals of delight soothed my soul. The storm inside my heart was calm, the fear dissipated. As I looked into the deep blue eyes of my smiling boy the heaviness was gone and there was only one pervasive thought flooding my mind and heart “It’s a beautiful life. Really, really beautiful.”

“There’s a light making it’s way. On up the mountain night and day. And you’ll get tired and you’ll get weak, But you won’t abandon your masterpiece.” –Jakob Dylan

18 09, 2013

School Daze

By |September 18th, 2013|Autism, Blended Family, Life, Parenting|0 Comments|

I’ll be honest here, I am not the mom on Facebook talking about how sad I am that my kids are heading back to school. I mean, I absolutely love my kids but summers are hard on our family. I’m a working mom so my schedule doesn’t change much except for that in addition to work I have to add in taxi driving to swimming lessons and t-ball, ever changing therapy appointments, vacations, and knowing that while I’m at work my kiddos are home running my sweet sister-in-law/nanny ragged. Summer used to seriously be my very favorite season but not anymore. I.NEED.MY.STRUCTURED.LIFE!

Now having said all that, I have to admit that as school started this year I walked around with my game face on, but in reality I was in this weird daze. I felt like I was going to break down and sob at any moment for weeks. I think another autism mom who I stalk follow on Instagram hit the nail on the head when she said that her son was supposed to be starting his first full day of school this year but it was his 4th! Just like Bridger. It’s his first grade year but he’s been going to school/therapy all day for years. That mom said her heart is messed up and I agree wholeheartedly (with my whole messed up heart), hence the state of emotional duress as I sent my sweet 6 year old who doesn’t even talk, on a big yellow bus for 8 hours a day to yet another new school with complete strangers. How much can a mommy take???

After a couple good cries in the privacy of a locked bathroom and a few weeks under our belt, the fog is lifting. Bridger isn’t falling asleep at the dinner table after all day at school and two hours of behavior therapy anymore. He actually thrives off his rigid routine. He seems happier, crying a lot less and he’s communicating much better. Even though I miss him while he tends to his busy schedule, I know we’re giving him the best chance to succeed.

So we’ll keep running our crazy rat race, disguised by a carefully planned out and color coded calendar on the white board hanging on the kitchen wall. And when I climb into bed each night exhausted, I’ll remember to be thankful that it’s fall and not the lazy days of summer…

“Some days I don’t know if I am wrong or right. Your mind is playing tricks on you, my dear. ‘Cause though the truth may vary, this ship will carry our bodies safe to shore…”–Of Monsters and Men

4 10, 2012

The Five Dollar Autism Shoes…priceless…

By |October 4th, 2012|Autism, Blended Family, Life, Parenting|3 Comments|

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

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