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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
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’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 ….
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.”
Camilla and Lillian
“Most people see what is, and never see what can be.” -Albert Einstein
Observing, paying attention, being aware of the present moment. What’s happening, who you are with, are you having a conversation? Are you really being present for the conversation or are you thinking about all those bills that are due or what you’re making for dinner or what happened on the last episode of your favorite show.
Observing and paying attention are keys to our own happiness and success. In addition, they are crucial in our function as special needs parents. Have you noticed that many with intellectual disabilities are more intuitive than us typical folks. They can sense insincerity, they know when someone is not being present, not listening to them, “faking” kindness. {Just had someone point out that they think we ALL sense insincerity. I’m thinking I didn’t use the proper words to describe what was going on in my head! From my perspective, as Mom to Lillian, I have noticed that Lillian is super sensitive to adults in her charge who are insincere – even when I sometimes don’t initially sense it. I’m also not saying that those with intellectual disabilities are “more” than those of us who have all of our genes. I believe some who are missing genes have a heightened or increased awareness in some “areas”.}
How will we guide our kids with special needs into a fruitful, happy and successful future if we are not present for them? Observe their likes, dislikes, what are they good at doing, favorite hobbies and maybe they have topics or interests they seem obsessed with . . . the weather, the time, making lists, making a plan and sticking to it. Observe these and then use these qualities to their advantage in life. They like these things for a reason. It’s not up to us to figure out why they like or don’t like something or why they are obsessed with a topic. Let’s observe, be present and give them every single opportunity we can to blossom and use the special and unique gifts they have.
I recently returned from the Chromosome 18 Conference and I was humbled by the young adults. {The photo above is Lillian and I at Reno/Tahoe airport headed to the conference in Indy.} One of the last conversations I had with my Chromosome 18 family was in the hotel restaurant having lunch with 20 year old Kati. Kati’s mom, Deb, and I began talking about movies and I mentioned the Lion King. Kati said that was the first movie she had ever seen. Then she proceeded to tell me the second movie, the third movie, the fourth movie and on and on up to the Last Harry Potter movie she had seen. She remembers this about books she’s read also. I don’t know about you; but I find that pretty darn amazing. I was in awe of this young lady. How many of you remember every single movie you have seen beginning with the very first one. Kati loves to plan events and trips. She is planning a trip to Vegas for her 21st birthday which is a little less than a year from now. She loves horses and wants to travel to New Zealand and Florida. This young lady is amazing and look at the unique and special qualities she has been gifted.
I was also intrigued by how many of the young adults have as a dream working with animals and/or children. It seemed to be a very common thread. I asked my friend, Catherine Burzio, if she thought it was that each was simply picking up or borrowing what the previous young adult had said. She said “No, that’s not it at all”. It’s the unconditional love that animals and young children give. I fully understand that for one reason or another there are reasons that some of these young adults cannot work as a vet or even a vet assistant or in a child care facility. But, do you think if we observed them more and were present more we and possibly a coach and our community could find or create just the right fit for them. A fit that gives them the opportunity to do what they love and enjoy and are good at and earn money for themselves.
I don’t know and I’m not at all saying this is the right technique for everyone . . . I’m just thinkin “out loud”. What do you think?
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