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News: Neurodiversity Learning Continues – Family Update

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January 26 2022


(Photo from a January 2022 walk with Thomas – Galena Forest)

I received the results of Lillian’s neuropsychological evaluation this morning. It was as expected (plus some), however, overwhelming with much parent guilt over not having done this earlier in her life. Hot tears have been flowing on and off most of the day. This also brought relief in knowing the “why” of some issues.

I feel like I’m the middle of the rope in tug of war between helping Thomas get enrolled for dual credits for his last two years of high school, along with figuring out college, and thinking about all that needs to be addressed with Lillian. Plus addressing some of my own medical issues. We’ve got the route(s) figured out for dual credits. It’s just taking all the steps, filling out the forms, and looking into colleges to be sure the credits transfer to the 4 year degree.

I have been letting myself feel sad and sorry for myself today, as I do this all alone. Some days I’m just so damn tired. I will walk into the overwhelm, the tiredness, and let myself feel it all. I don’t believe in smooshing these kinds of feelings down, piling positivity on top of it. That does no one any good. I believe in physically feeling the shit of life.

This evaluation assessed more than autism. I’ve not shared the results as that is up to Lillian as to whether or not we share. She does have some hard core disregulation happening. These diagnoses have opened up therapies that insurance would not pay for without the diagnosis, and informed me of specific therapies and tests I did not know about. Therapies that would have been incredibly helpful earlier in life. Yet, we will start where we are.

Then, tomorrow, or the next, or the next, I’ll move back to knowing that I’m a damn cheetah, because I can do hard things. (So glad I read Glennon Doyle’s book and learned that phrase! Highly recommend her book, Untamed.)

I’m not posting for sympathy. I’m sharing because that’s part of my processing. Getting it out of my head. And I know if I’m feeling this way, others I know may be feeling this way. 🌹🌹🌹

**March 2022 Update** Things are moving along nicely with figuring out Thomas’s path. We’ll learn any day now if he has conditional approval where he’s applied, and we’ve lined up alternatives just in case.

Moving much slower with Lillian. Although she has finally looked at the report following her assessment, she and I still need to discuss next steps. She seems resistant to move forward. Hopefully, with time she will become less rigid about it.

Moving forward with addressing my health issues, too. I’ve begun twice a week physical therapy to address neck issues; which will continue for 8 weeks. I purchased a stand up desk, that adjusts to all positions so it can be used as a seated desk as well. And I’m taking the first steps in addressing my GI issues.

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here. 

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

News: Camilla Joins The Family Navigation Network – A Project of NCED

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I have been offered and accepted a very part-time position with the Family Navigation Network (FNN); which is a project of the Nevada Center for Excellence in Disabilities‘ (NCED). NCED is a part of the University of Nevada, Reno.

I’ll be working about 10 hours a week, with the opportunity to work 20 hours a week. I just don’t see the 20 hours happening any time soon, though. I finally hit 10 hours last week. Ha! I’ve been with them for about a month now, just have not had the time to make a proper announcement.

Family Navigators help connect families with resources that they may not have known about; while at the same time collecting resources and information that we can share with families. So far I’ve spent much of my time onboarding, attending webinars (to learn about more resources, and the like), and have stepped into researching what type of information and resources Nevada families need.

When I come across resources I feel would be of benefit to my Chromosome 18 family, I make sure to share them in the 18p- facebook group as part of my volunteer coordinator role.

Here’s a description from the NCED website:

The Nevada Center for Excellence in Disabilities serves as Nevada’s University Center for Excellence in Developmental Disabilities (UCEDD). The UCEDDs were established and funded by the Developmental Disabilities Rights Assistance and Rights Act (DD Act). UCEDDs work to accomplish a shared vision that foresees a nation in which all Americans, including Americans with disabilities, participate fully in their communities. Independence, productivity and community inclusion are key components of this vision. The DD Act funds 67 Centers at universities in every state and territory.

And a description from the Family Navigation Network website:

Resources. Support. Navigation.

Located within the Nevada Center for Excellence in Disabilities, the Family Navigation Network is a place to find health care support and community resources for children and youth with special health care needs, their families and the professionals who serve them.

I’m excited to put my skills, knowledge, and heart to use helping other families. xoxo

Blessings,
Camilla
See It. Share It. BE IT … Spread Love Everywhere You Go!

“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 20 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here. 

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

 

Get to Know Me: Forced to Spend Your Life in a Library

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I’m a member of an author/book reader facebook group, and the admins ask great questions. I decided to turn some of the questions into a “get to know me” series. I would also love to hear your answers to the questions posed in the series. Thanks Helen for asking such fun questions!

If you were forced to spend the rest of your life in a library, a museum or a zoo, which would you choose and why?

When my kids were younger, we visited the library every other week, and left with 4 bags of books. We were still doing that up until COVID, as my daughter and I volunteered at the library every Wednesday. When they were young, we used to pretend the library was our house, and would plan out where we’d have our bedrooms, living room, etc …. Beautiful and fun memories!

A toy company makes an action figure of you. What two accessories does it come with?

A button you press that satisfactorily takes care of all paperwork one would ever need taken care of and another button that cleans the toilet for you.