Tag Archives: special needs parenting

KOLO 8 Daybreak News Segment – January 4 2013

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On Friday, 1.4.13, I was on KOLO 8 Daybreak News with Annie Goni-Stewart, eWomenNetwork managing director. Had to be there at 6:00 am … How exciting to be dressed and outta the house at such an early hour! We talked about eWomenNetwork Reno/Carson/Tahoe/Vegas/Sierra Nevadas Chapter and my book, ‘D iz for Different’.

Walking into my very first eWomenNetwork event in July 2007 was one of the most positive life enhancing decisions I had made up to that point in my life. I am blessed with such amazing friends and support. I have a very long list of how I’ve been blessed by being a member. The car I own came through an eWomenNetwork connection. The teaching I did at UNR Extended Studies came through an eWomenNetwork Connection. Seriously, down to some of the clothes I wear and food in my fridge! And what I didn’t get a chance to say in the interview is that the two BIG endorsements I received for my book came through eWomenNetwork. I was fortunate to meet the Ziglar family at the 2010 International Conference in Dallas. I stayed connected with Julie (Zig Ziglar’s daughter) and DeDe Galindo(his granddaughter) and that friendship let to Julie Norman endorsing my book. Another eWn Member, Debe Fennell, connected me with Jim Stovall, author of the book and movie, The Ultimate Gift. That led to his endorsement of the book! When we bring our authentic selves to this amazing group of women and come with a give first, share always philosophy ….. Wishes and Dreams Come True!!!

View the segment here … https://www.kolotv.com/video/?autoStart=true&topVideoCatNo=default&clipId=8132638

Susan Hill facilitated all of this, so the three of us went our for coffee afterwards. Cheers!!

Special Needs Book Review Guest Post

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Thank you to Lorna d’Entremont of Special Needs Book Review for sharing with her audience about ‘D iz for Different‘!

Special Needs Book Review is pleased that yet another author agreed to introduce her book to our readers. This guest post is by Camilla Downs the author of D iz for Different – One Woman’s Journey to Acceptance. Since the book’s publication, Camilla Downs has undergone her own professional transformation with a career change from social media consultant to special needs parent coach and mentor, offering hope and guidance to others parenting kids with special needs. Congratulations Camilla on all your achievements! Thank you so much for sharing your story with us. First, who is Camilla Downs?

……….. “Feelings of isolation and overwhelm keep special needs parents stuck, especially when coupled with deeply ingrained erroneous thought habits,” said Ms. Downs. “Special needs parents can unknowingly isolate themselves and begin viewing their lives in a negative way. These findings from the discussions and interviews that went to the writing of D iz for Different have been further confirmed by the hundreds of discussions that have been generated since its publication in May of 2012,” she added.

Go here to read the entire article.

The 7th Annual Caregiver Recognition Celebration

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On November 15th, 2012 I was fortunate to be able to attend The 7th Annual Caregiver Recognition Celebration! It was a double fortunate as my step-father, Frank Romano, had nominated me to be recognized! Thanks tons Frank! My Mom, Patty, and Frank attending the luncheon with me. It was GREAT! I was so moved by the event I wanted to post all who were nominated as well as the winners in each category. It was definitely a very inspirational luncheon!

Edwina Taylor- Caregiver for Child or Youth with Special Needs
Kathy Carpenter- Double Life Caregiver
Bonnie Timmreck-Family Caregiver
Rosa Moala- In Facility Caregiver
Megan Riley-In Home Agency Caregiver
Janet Hatch- Hospice or Community Volunteer Caregiver

Renown Children’s Hospital Scribbles …. Journey to Special Needs Parenting

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I recently got the privilege of guest posting on our local children’s hospital blog. Head on over to the  Renown Children’s Hospital Scribbles blog to read the full posts y’all! Part 1 – It began one December evening in 2004 while … Continue reading →

17 Easy and Free Ideas on How to Rejuvenate Yourself

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I know I’m not alone in having those times (far too many) when my shoulders and neck have made themselves at home nestled right under my ears. Now, although my shoulders may be happy there, the tension this creates is not happy news for me and my brain!!

I also know I’m not alone in having zero to very low funds to invest in rejuvenating activities so I’ve put together this easy and free list in the hopes that you find a thing or two that works for you.

    1. Laugh!
    2. SMILE … even when you don’t feel like it … smile especially at those you love.
    3. Feeling overwhelmed, angry or sad? Take deep breaths and drink a big glass of water.
    4. Step outside for a few minutes of fresh air.
    5. Turn on your favorite music and DANCE for a few minutes … or more!
    6. Go outside and gaze at the moon and stars.
    7. Clean for a few minutes … this ONLY works if you clear your mind and solely think about your task at hand.
    8. Keep a Happiness and/or Gratitude Log … Whenever you have a few minutes write in it …
    9. If you have a flower garden, step outside and SMELL THE FLOWERS!! Smell them, touch them and admire them. Think about ONLY the flowers.
    10. Spend a lot of time in your car? Listen to inspirational audio recordings. Better yet … make your own, recorded in your own voice.
    11. Stop and stretch for a few minutes. Stretch your arms to the sky, bend over and touch the floor. Open your arms wide and stretch.
    12. In the thick of an unpleasant situation, say to yourself, “I am forever undisturbed.” This helps to create a buffer between you and whatever is happening.
    13. After everyone’s in bed, instead of escaping with television drama, try this instead … read 10 or more pages in an inspirational, self-help or humorous book.
    14. When a friend or family member gives you a break to run errands or go to appointments for yourself, build in an extra 10 minutes. Go for a quiet walk with those 10 minutes. Sometimes a 10 minute walk is all you need to recharge.
    15. While waiting in lines, try not to read the tabloid headlines. Take deep belly breaths. Release all worries, thoughts of yesterday and tomorrow … completely empty your mind with each exhale. Do this at least 3 times. Next, breathe in peace and joy. Think of yourself as a sponge soaking it in.
    16. While waiting for your child at appointments, try not to sit in the lobby. Go sit in your car or outside somewhere. Use all of your senses. Just sit and listen to the sounds of nature. Feel the breeze or the rain or the grass. Look around you and think about only what you see. Do you see flowers or trees? Think about the shape and color of the flower and/or tree and whether it’s smooth or rough, etc.
    17. Print this list and keep it in your purse and your car …

If you find this content helpful and/or inspiring, and it feels the thing to do, I invite you to buy me a coffee … Thank you!

Buy Me A Coffee

Now that you have a starter list, add your own ideas and personalize this list. Be creative and have fun with it. What do you think? See some on this list you plan on trying right away? Please share your thoughts for easy and free ideas for rejuvenation!!

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

Coming Soon!! “Words of Alchemy” is the latest book coming to life! Shooting for near the end of July 2019 for publication date.

Amazing news! My 17 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 13 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.

Go here to see latest soul writings. xoxo

Handicap This! …. Guest Post

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I am thrilled and honored to have been a guest over on the Handicap This! blog y’all!

Here’s a little snippet of what I shared over there:

“These two (Thomas and Lillian) are truly a gift to me and the World. Coupled with my life’s journey, they have helped to awaken my true self. The three of us make a GREAT family and team!

Why Do I Write?

I write because there is something inside of me that won’t let me not write. Something that gently nudges and says, “You’ve just got to share that.” My instinct, my gut, whatever you want to call it – that’s what I’m talking about. I fought this feeling for a while. I didn’t think I had anything meaningful to contribute and wondered why anyone would care what I thought or had to say. I know down to my core that I was chosen as Lillian’s Mom to in some way help those like her and parents/caregivers of those like her. I have a journey that I felt must be shared with others to inspire, give hope and motivate. Another reason I felt compelled to share my journey was to help people understand that the way they choose to view life matters more than they know ….. ” Head on over to read the entire post and check out the great guys over at Handicap This!

Lillian and Being Different Presentation

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It’s that time of year again … Lillian’s Birthday!! Happy Birthday Lillian!! Every year, except last since I homeschooled her last year, I give a “Lillian” presentation to her classmates. This began in the first grade because her classmates kept … Continue reading →

Time To Just Be

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For the first time in about six years I scheduled a “date” with myself … no plans, no appointments, no errands, no networking events … nothing. When I was married, I scheduled a date day with myself once a month, just as I did with Lillian and my spouse. Thomas was not yet 1 year old so I had not begun date days with him yet. I haven’t done that since 2006 (scheduled a date with myself, that is … I have a date with Thomas and Lillian alone once a month).

You see, I’ve just recently realized what *respite means, the true meaning and it’s true purpose. Since 2006, I have used my time away from Lillian and Thomas to go to personal appointments, run errands, attend networking events and work. I really did not think of myself as a *caregiver and one who needed respite. I didn’t really know the definition of a caregiver or respite. (See below for a definition of “caregiver” and “respite”.)

In the last couple of months I decided I absolutely must have some time to myself … time to just BE. I finally scheduled someone to come stay with Lillian and Thomas on July 12, 2012 for 4 hours, not knowing how I would pay for it. But, I knew this had to be done for my own sake and for the sake of Thomas and Lillian. (***Update*** After I wrote this article, I found out, without my asking or saying anything, that grant money was going to be used to pay for my respite for this month. Hmmm … Coincidence??)

I have read, heard and believe that we each must have time to ourselves, caregivers or not. Time for doing what we like to do, want to do or time to do absolutely nothing at all … with no commitments. Taking respite allows us to refuel and refill our cups so that we can come back to our families and our obligations and serve to them from what overflows. Having this time infuses us with creativity, patience and resourcefulness. I understood the concept and thought I was doing good, giving myself 15 and 30 minutes of it before Thomas and Lillian wake up in the morning and after they go to bed.

Today, when I finally left the house, thirty minutes after the scheduled time, I still didn’t know what I was going to do. I knew I wanted to write … I have been craving to write …. articles, quotes, poems … whatever, my soul has just been screaming … “Write, Write, Write!!” But, when I left my stomach was screaming, “Feed me first before you write!”

I found myself at the Summit Sierra outdoor mall as I didn’t want to waste any of my 4 hours (now 3 and a half) driving somewhere. I then got extremely confused … where do I eat, I don’t know what to do. I posted on facebook asking local friends which of two restaurants I should eat at. I sat in the car and pretended like I was reading for about 30 minutes, all the while getting more and more confused … wondering what in the heck I was doing. I finally decided I would just go to a fast food restaurant. I pulled up to a handwritten sign that the debit card machine was not working and I didn’t have any cash on me. I couldn’t back up as someone was behind me and couldn’t go forward as people were waiting for their food. I was forced to wait, all the while wondering what the heck I was doing!! For me, this was a reflection of what was happening in my mind. When I was finally “free” from the drive through lane, I parked the car. What do I do? My intuition said to go back to the original restaurant I had chosen, so that’s what I did.

And you know what? I had one of the most blissful meals and experiences I have ever had! I was on the verge of tears, hoping the waiter didn’t come ask how I was doing while I had tears welled in my eyes. I was thinking, so this is what it’s like? I had forgotten …

I’ve heard that this is a common experience with caregivers … We have forgotten what it’s like to have time to just BE. The second we leave our loved one we become confused and are not sure what to do with ourselves. I didn’t think it would be like that for me … I even wrote about giving yourself quiet time in my book, “D iz for Different”, in Chapter Q: Q is for Quiet … Now, I understand …

…. And watch out because now my passion is welling to the point of overflowing to educate and help other Moms/Parents/Caregivers of special needs kids understand too …. to include a new project brewing over at the Turning Views Foundation and Different iz Good. Oh and you better believe that scheduling respite or a date day with myself or whatever you want to call it will become a permanent part of my life!

For those of you attending 19th Annual Chromosome 18 Conference, this is what I’ll be speaking about, Taking Time for You, in addition to three 15 minute Proloquo2Go sessions.

Stay tuned as I’ll be writing a post detailing a bit more statistics and facts about caregiving and respite.

*Who are Caregivers? 

Caregivers have often been called the backbone of America’s long-term care system. On a daily basis, family caregivers assist relatives and loved ones of all ages with routine daily tasks like bathing and homemaking to carrying out more complex health-related interventions like medication adminstration and wound care and managing complex needs of children and adults with disabilities.

In 2009, it was estimated that 29% of the population, or nearly 67.5 million people, provided some type of care to children and adults of any age, including the elderly, with special needs. These caregivers provided nearly 20 hours of care per week and often do so at the risk of great phsyical, emotional, and financial hardship. (Source: Caregiving in the U.S.: 2009. National Alliance for Caregiving/AARP, November 2009. https://www.caregiving.org)

*What is respite?

Respite is a key component of family support and home and community-based long-term services and supports. Respite services strengthen family systems while protecting the health and well being of both caregivers and care recipients. The Lifespan Respite Care Act of 2006 defines respite care as “planned or emergency care provided to a child or adult with special need in order to provide temporary relief to the family caregiver of that child or adult.” Respite services may be provided in a variety of settings, including the home, adult day care centers, or residential care facilities. (Source: Fact Sheet from The Lifespan Respite Care Program)

I Wish I Wasn’t An 18p- Girl: Moment of Defeat – Take Two

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I’m pretty sure Lillian has said something like this at least once in the past. I’m not sure exactly why, but this time it felt like a punch to the gut.

Lillian falls frequently due to depth perception and balance issues. She fell pretty hard on the tile floor tonight, and this is what prompted her to make the, “I wish I wasn’t an 18p- girl” statement. She’s okay. Got one heck of a bruise on her elbow. I told her it was okay to feel like that and to wish she didn’t have 18p-. I also told her that 18p- is not who she is. I told her she is Lillian, and 18p- is just a special quality she has. She smiled and said, “I know.” Twenty minutes later she was fine and had forgotten all about her comment.

I didn’t though . . . Guess you could say this is my Moment of Defeat – Take Two.

The moment after she was in bed, I had that “time standing still” feeling and the tears began flowing. I began to question everything I’m doing, my belief system, my thought processes. I had the “Who do you think you are?” and “What are you doing?” thoughts in the mix too. The last time something like this hit so hard was in May 2010. I wrote about it here: A Moment of Defeat.

Why? Why did this statement, on this particular night, this particular week have this impact on me? Maybe partly due to the book I’m about to release in which I share about myself, my past, my thought processes and my belief system. I’m on the edge, facing some fears and taking hold of that vein of courage within me. Then, I’m sucker punched by one little statement from the little girl who inspired me to “be” where I’m at and to write this book.

Maybe partly due to needing a break from this beautiful young lady. Maybe partly due to feeling a bit guilty as I’ve not shown patience lately in understanding what Lillian is trying to say to me. Guilty because there are times when I cringe when I hear her begin to speak to me. I know I will not understand half of the words she speaks and I will have to focus 100% on what she’s trying to say and it will take double or triple the amount of time to understand one little sentence . . .

**LOVE OFFERING** If you find this content helpful, I invite you to toss a tip in the love offering bowl. With oceans of gratitude … Camilla ….

love-cards-in-a-basket-october-2016

Yep, this one hit hard. Only for a moment though (well, okay, maybe a few hours!). I remind myself that I DO exhibit patience more times than not, I DO choose to have a sense of humor and laugh about it with Lillian. I remind myself I KNOW why I wrote this book. I KNOW that my belief system and thought processes are right for me as this is what brought me to the acceptance and happiness that has always been right here within me. I remind myself that I am sharing it with others in the hopes that something I’ve written will give someone hope, encouragement and inspiration. I remind myself that just a few hours earlier a little girl with wisdom filled eyes looked in mine and said “I know.”