UTAH FRIENDS: Our state legislature will be in session beginning January 22 and they are voting on an issue that is very important to Betty and the rest of our family. You might assume (as I once naively did), that having a disability (or many!) means you automatically qualify for Medicaid or SSI or something... anything?! Well, that may be true in some states, but not in Utah. The asset limits that disqualify a child in need are ridiculous (if you own more than one car, you ...don’t have a chance - not to speak of savings, retirement funds, etc.). While traditional insurance is necessary and helpful, there are many things it simply does not cover. For example, it limits the number of annual visits to a physical therapist, or the reasons you can see a speech therapist. Plus, the deductibles, co-pays and other costs associated with insurance continue to skyrocket. That’s why we have been SO THANKFUL to be part of a pilot program known as the Medically Complex Children’s Medicaid Waiver for the past year and a half. This program serves medically complex children, getting them the care and services they need through Medicaid, while waiving the parents income and assets so the child can qualify based on their income alone ($0 for this four year old 😉). Currently this program helps more than 500 of the most medically complex children in our state. The legislature will soon vote to determine if they will fund this program indefinitely, or if funding will dry up at the end of the pilot (this summer!!!). Please consider contacting your local representatives in support of the bill (H.B. 100) to establish and fund this program in our state. If you need help finding your representative or drafting an email to them, DM me and I’d be happy to help. ❤️ #specialneeds #disabilities #utah #medicaid #mccw #writeyourreps
When it takes heaps of paperwork, hours of phone calls, months of appointments, and getting passed around to every known specialist in order to land on a diagnosis, there is no room for shock, surprise, or even disappointment. So today we are celebrating instead! Nothing about Betty has changed, but her ability to access and interact with the world just might, now that we can get more of the services she needs. #welcometoautism #autism #specialneeds #diagnosis #openingdoors
I love this sweet video. Every member of our family is better because Betty is ours. ❤️
This is a new local business we can't wait to support. Just a great story all around. Who wants to come??
This is a really beautiful and easy-to-understand video. Worth a watch.
Thursday - It's preschool orientation! We drive down to Betty's preschool to meet with her teacher and a few of the specialists on her team. Her teacher hands me a stack of papers and begins to go over them. Nothing new here: forms, approved snack lists, a reminder to please not send your child to school when they have a fever, an overview of the curriculum. [ 1,055 more word ]
I really shouldn't care what other people think, but every time I post about the challenges of being Betty's mom, I feel the need to post a follow-up clarification statement of sorts, for fear that everyone will think I see Betty's life and mine, as her mother, as a tragedy. I don't. I'm pretty sure if you know me or have followed me here for very long that you know that, but bear with me. 💛
We have plenty of joyful, happy moments. And also, this season has been particularly ...difficult because a) summer b) postpartum hormones c) Betty is growing, and caring for her is starting to cause some irrevocable physical damage to my body. There is happiness and there is sorrow, longing and fulfillment, gratitude and wishing things were a little different at times.
I think that occasionally posting some of the hard truths about parenting a child with special needs is important. Without vulnerability, there is no connection. And I like connection, especially in the occasionally-isolating land called motherhood. And since I'm talking vulnerability, might as well throw in a @brenebrown quote, yes? She sums up what I'm trying to say so well, "I'm slowly learning how to straddle the tension that comes with understanding I am tough and tender, brave and afraid, strong and struggling - all of these things, all of the time. I'm working on letting go of having to be one or the other and embracing the wholeness of wholeheartedness." #specialneeds #motherhood #vulnerability #specialneedsmom #strongandstruggling #wholeheartedness
Throwing it back to when Betty was the same age that George is now (4 months). In fact, he's sleeping right now in that same ducky sleep sack. 😍 The past several weeks with Betty have been super hard. I start to feel bad for having a hard time but when I think about it more abstractly, it is a little easier for me to see why I feel like I'm on the verge of losing my mind on the regular: it's extremely difficult to do everything (every. thing.) for a little person who mostly s...creams and arches away from you, and to do it for YEARS. That's all. There's no answer or grand solution. It's just hard. And that's ok. But today has been a better day and she's reminded me that there is still a delightful little girl in there. And man, wasn't she a cute baby? I mean, come on. (BTW I have to mention that there are people who give so much to make life easier for me and my family and for that, I am so, so thankful) #tbt #specialneeds #specialneedsmom
I had this whole big long caption written about our Betty-less hike yesterday. But I erased it all because I'm not ready to put those difficult feelings on public display just yet. Let's just say it's getting hard(er) to go anywhere with Betty. It's a reality I struggle to embrace, even 4.5 years into her life. And leaving her behind makes me sad. #specialneedsfamily #specialneedsmom #albionbasin #hikingfamily
For nearly a year, we've been trying to get Betty to touch, look at, or stand in a gait trainer without supports like a hip positioner or chest support. And she has consistently resisted and fought us. After yet another failed attempt last week I was seriously starting to wonder if PT was even worth it. And then today she pulled up in the gait trainer, held on, and took off! This is a whole new level of independence and I'm so proud of her! 💜 (lots more proud mama video in stories)
We pass through the valley of the shadow of death to bring our children into mortality. And then we spend the rest of our lives climbing mountains for them, with them, and often while bearing an impossibly heavy load. This is motherhood. And you know what? I wouldn't have it any other way. After all, I've always loved the mountains.
Happy Mother's Day! I gifted myself a print of this loveliness by @caitlin_connolly_ to commemorate the day. It reminds me that while climbing can be hard, there's no one I'd rather do it with or for. And of course, thank you to my own wonderful mom, who climbed with and for me, and continues to help me appreciate the beauty that can only be found in the unrelenting hills. @margie.madsen