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

9 02, 2014

It’s still about a little blonde boy…

By |February 9th, 2014|Autism, Life, Parenting|0 Comments|

2013-08-15 12.10.41A year ago I wrote It’s about a little blonde boy… about our fight to get insurance coverage for our sweet son with autism in Utah State. The bill didn’t pass so here I am again full of hope…and if I’m being honest, sometimes anxiety about what is to come. It is still, and always will be, about our little blonde Bridger…

Since I work for the State of Utah we have been blessed the last year and a half to participate in a Pilot Program so Bridger’s ABA Therapy has been insured 80/20!!! This amazing blessing has given us the opportunity to breathe again after depleting our “emergency savings” the prior year paying for these services that have been essential to Bridger’s progress but will break the bank if you’re not independently wealthy.  If you follow me on Facebook then you have been spammed by seen the many brag-posts boasting that Bridger is now using some sign language to communicate with us, that he occasionally repeats a sound that amazingly resembles a word, that he is starting to learn how to swim and that he is using a spoon and fork to eat sometimes now instead of only using his fingers! These may not seem like notable feats to the parents of a typically developing almost 7 year old, but to our family these are cause for celebration!!! Seriously, full on clapping, cheering, grab the camera, high-fiving moments! They are moments that give us hope for the future of our sweet little blonde boy…

Unfortunately, the pilot program ends the last day of June 2014. If something doesn’t happen in the current legislative session, the Frys will have to say good-bye to Ben. Ben is Bridger’s ABA Tutor that has worked tirelessly with our boy for the last year and a half to help him tolerate holding a crayon in his hand, then scribbling and most recently drawing a straight line (hip hip hurray!) Ben has become more than a tutor to us, he has become part of the family and at times he is our savior. He has worked countless hours so that Bridger could learn to spoon his food and learn new signs. He teaches him skills by repeating them over and over and rewarding him as he learns. If only you could hear the cheers from Bridger’s workroom and the squeals of delight as Bridger masters a new task. Coming up on the agenda for Ben and Bridger is putting on and taking off his shoes and coat and sometime soon even potty training! ABA will help Bridger learn self-help skills and gain some independence so that in the future he doesn’t have to depend on others for everything!

2013-08-15 14.44.39ABA Therapy may not be the route that all parents of autistic children choose to take, but for us it is the right method. It is the way our son learns. It is what will help him progress. We know it, we’ve seen it, we’ve lived it! We are not asking for a hand out. We just want our insurance to help cover this treatment as they would any other medical treatment! And for the record, even when it is covered 80/20 it’s not cheap. The numbers would probably blow your mind. But to us, it is worth it. We love our sweet Bridger to the moon and back a million times just the way he is, that is why we have to give him every skill we can, teach him as much as we possibly can so that he can reach his full potential whatever that may be…

So for now as the hustle and bustle of the New Year continues we will be quietly praying our guts out that SB57 will pass! We will be praying that legislators will open their hearts and hear our cries! We will be praying that this is our year! We will be praying that people and businesses in our neighborhoods will support us, support our son, support autism!

Candidly speaking, whether the bill passes or not, we will prevail. We have learned from our experience as parents of a child with special needs that for every door that is slammed in our face, there are lots of open windows if we look hard enough to find them. Thank you to those of you who are responsible for the open windows. They come in so many different shapes and sizes. They make a difficult journey easier. Thank you! Thank you! Thank you!

We will keep fighting. We will keep pushing forward. We will do whatever it takes to help our amazing little blonde boy whose presence in our lives brings joy that cannot be explained in words. “To know him is to love him” a truer statement has never been spoken…

“All you need is love. All you need is love. All you need is love, love. Love is all you need.”—The Beatles

2014-02-02 16.28.58

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

8 02, 2013

It’s about a little blonde boy…

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

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