The Sidetracked Parent

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**Memoir Coming Fall 2026**
Helping Rare Disease and Special Needs Parents Navigate the World of Education, Resources, and Support
Customized Rare Disease Ribbons, Clothing, & Accessories

06/14/2026
06/13/2026

MISSING AUTISTIC ADULT ๐Ÿšจ

๐Ÿ’” A family is living every parentโ€™s worst nightmare right now.

35-year-old Khan Nguyen has been missing since June 3, 2026, after leaving for an approved walk from the adult group home where he lives and never returning.

Khan is autistic, developmentally delayed, and functions at approximately the level of a 10-year-old child. Every hour that passes without answers is filled with fear, heartbreak, and uncertainty for the people who love him.

๐Ÿ“ Last known location:
72nd Street and Portland Avenue, Tacoma, Washington

๐Ÿ‘• Possible clothing:
โ€ข Navy blue zip-up sweatshirt
โ€ข Blue jeans

Khan may be confused, frightened, vulnerable, and in need of help. If you see him, please approach gently and calmly. A simple act of kindness could make all the difference.

His family is desperately waiting for the phone call that says he is safe.

๐Ÿ™ Please do not scroll past this post. Share it. Talk about it. Help us get Khanโ€™s face in front of as many people as possible. One share could reach the person who sees him and brings him home.

If you have seen Khan or have any information about his whereabouts, please call 911 immediately.

Letโ€™s come together as a community and help bring Khan home safely.

โค๏ธ Every share matters.
โค๏ธ Every prayer matters.
โค๏ธ Every set of eyes matters.

06/13/2026

While I know the two humans in this picture are the same two humans sitting at our kitchen table right now, it genuinely feels unreal.

It's been almost ten years since, after a chaotic and tumultuous birth, Georgia finally took her first breaths. The memories of those early days feel like a fever dream. When the baby you give birth to doesn't match the vision you expected, grief muscles its way into everything, and still, with almost ten years passed, that grief still finds its way into my heart sometimes.

But as the saying goes, time heals all, and our family and our Georgia girl have fought for so much of this amazing version of our lives. We just have one more gigantic hurdle to climb in order to make Georgia's life so much easier... and in turn help us, her family and her caretakers, ensure she lives a long and safe life in a comfortable home.

This idea of Georgia's dream home was something Patrick and I started to envision years ago. We heard no more times than I could count. "No, your credit is bad," "No, your income isn't enough," "No, your income doesn't count," "No, you don't have enough to put down..." but each no just kept pushing us harder towards something we knew we needed for our daughter. We could never quit. She wouldn't and has never.

When our loan finally came through almost a year ago, it was our third attempt and it took over 10 months for us to get our application finished and approved. But we persisted, and the moment the ink hit the paper, we believed the worst was behind us.

But we continued to hit snag after snag, and in December, in an attempt to rectify the situation, we changed our floor plans that we had loved in order to meet the county's specifications. I have learned so much about dirt and soil and septic systems against my will over the last year, and even when the new floor plan was *finally* approved by our loan officers, the county still said no. Then, we hired our second soil engineer who did find a way for it to happen... an expensive and time consuming way, but a way. So over the last two months, we have been going back and forth to try and make this happen.

Along the way, incredible human beings stepped up to help. Julie Ruth Singleton helped us reach a county commissioner and started a GoFundMe to cover the nearly $20,000 estimate. Our builders Barndominiums of Georgia have flexed and adapted with us every step of the way, and somehow have believed in this dream home of ours as much as our own family. Nathan Dockery and his team have jumped in, finding company after company to help cover the project. The community that has always held our family up through every difficult path continues to amaze my husband and me. I am personally in awe at how much one little life can make such an incredible impact in this world. Our baby was born to change this world, and I have always believed that. The impacts of her life have never ceased to inspire so much good, and every time it happens, I am overcome with gratitude.

Fierce Georgia On My Mind now has over 10,000 followers, so I am humbly asking for your help once more. Our fundraiser has collected a little over $4000, which will cover the cost of the engineer who helped us in this project. The last remaining thing we need to get taken care of is a pipe (so unglamorous, I know) which is the most expensive piece, $10,000. That means if every one of our followers simply donated one dollar, we would have more than enough to cover this pipe.

So please, if you have any pull in your heart, consider going to our GoFundMe (the link is the first comment in this post because of the algorithm). Even if you cannot donate, please share it. Share this post. Leave a comment. Even if you only say a few words about how Taylor Swift is a wonderful musician or your favorite color, it all helps boost this post to more people, and since our pages are monetized, it's the easiest way for someone to donate without spending a dime.

Across my kitchen table right now, sits a nine-year-old who wasn't promised even one year of life. In spite of having Trisomy 18, heart defects, cerebral palsy, vision impairments, being non-verbal, and needing a walker to guide her through this world that was not built for her, she smiles and fights every single day. She has inspired me more than I could ever put into words, and has helped me evolve into the woman I am today. As I have always said, "though she be but little, she is fierce." And she deserves a safe home. Please help us make that happen ๐Ÿฉต

06/12/2026
05/20/2026

โญ๏ธJoin Disability Book Week for our Superstar Author Interview with Dr. Destiny Pacha โญ๏ธ

The link to the interviews is in our bio or simply search on YouTube to visit our channel!

As you may know, DBW celebrates and shares books with positive and accurate disability representation to amplify voices, challenge stereotypes, educate, and foster a culture of understanding and inclusion.

Learn more about these amazing books and the authors who wrote them with Superstar Author Interviews!

05/20/2026

Dear editor...

Sydney is a grandmother to an 8-year-old granddaughter living with mucopolysaccharidoses (MPS1) who undergoes weekly infusions of enzyme replacement therapy. Here, she writes a heartfelt letter about fearing the loss of valuable support under new US policies.

Read Sydney Gingrow's Letter to the Editor here: rarerevolutionmagazine.com/fighting-for-life-and-hope/

05/20/2026

Some leaders say family caregiving is strife with fraud. I know at SOME level it is, but not at the level of the actual caregivers. Itโ€™s pretty difficult to fake caregiving when there are so many checks and balances at every turn.

I would love to know where the fraud occurs. But as a mother/guardian who provides that care to my two children on a daily basis, it blows my mind that people think it is so easy for a caregiver to work the system.

Believe me, that is NOT where the fraud is happening. They donโ€™t make it easy to access the money.

05/20/2026
05/20/2026

Key takeaways from the CDAC Meeting on May 13th, 2026

๐Ÿ‘‰ Community Connector services: 5-hour hard cap with limited exceptions for extenuating circumstances.

๐Ÿ‘‰ HCBS soft caps now in effect for personal care, homemaker, and health maintenance services.

๐Ÿ‘‰ Equine therapy was removed from HCBS waiver implementation due to budget constraints, though equine-based OT/PT services remain available through the state plan.

๐Ÿ‘‰ Proposed Homemaker limit: 7 hours per member (an increase from the original 5 hour limit)

๐Ÿ‘‰ New group rates in development for caregivers supporting multiple members - coming 2027

๐Ÿ‘‰ CES/CHRP โ†’ DD transition changes begin January 2027 and two people will need to leave services for a member on the waitlist to

๐Ÿ‘‰ Caregiving hours gradually decreasing to a 56-hour weekly cap by July 2027.

โ€ผ๏ธ Most importantly โ€ผ๏ธ Continue to attend meetings, participate in discussions and forums, and submit feedback/escalations.

We are here to help!

๐Ÿ”— Full summary: https://drive.google.com/file/d/1i8ErvnijDTWhzjdcN79NV8Lu_o9rPqA9/view?usp=drivesdk

๐Ÿ”— Latest version of the draft rule can be found here: https://drive.google.com/file/d/1R1Zfd6Qq5BXxAb-Th-9EmAKJXsfhr9Lg/view

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Colorado Springs, CO

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