Tag Archives: living with special needs

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.”

 

O is for Observe

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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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The Evolution of Communication

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Have you noticed it?  Have you noticed the way in which we communicate and conduct business has fundamentally shifted?  We are no longer solely communicating with our mouths and voices as a society.  A GREAT majority of us are using technology and social networking sites to communicate, work, conduct business and stay connected.  We, as a society, have shifted our communication style.  It is my belief that this shift has occurred in such a way to literally wrap it’s arms around the segment of our population who communicate with sign language or who cannot articulate in such a way to be understood.  Our communication methods are literally evolving to include more of our society than EVER before.  There are 8 of every 1,000 people in the United States who have some sort of communication disorder.

To fully grasp this just notice throughout your day how often you are communicating using technology via email, texting or social networking sites.  If you still conduct many of your conversations over the phone or face to face, stop and think, “How would I be having this conversation if I did not have the use of my voice or if I could not articulate what I’m trying to say?”  There are options now that weren’t available years ago! I, for one, believe there’s more to what is occurring in our communciation style than meets the eye.  I can’t begin to imagine where this is headed.  What I do know is that this is a GOOD thing for my daughter, Lillian, and those like her.

This is the VERY reason I was driven to create the Turning Views Foundation, the Different iz Good movement and the Gift a Voice Project.  We began a recycling program through which we collect last generation iPhones, iPod Touches and (soon) iPads to be donated to those who communicate with sign language or who cannot articulate.  **Update** We now take ANY used/inactive cell/mobile/smart phones. We also have it set up so that schools, companies, churches, etc can hold a Gift a Voice cell phone recycling drive and pay NO shipping for mailing the phones!

We also just got our first media coverage about the iPhone, iPod and iPad recycling program.  You can read the article at Reno News & Review’s website and The Gift of a Voice in Sparks News Tribune.  Please visit the Different iz Good website if you would like to learn more, see how you can Get Involved, take a look at our Wish List or even browse our Different iz Good store!

Would love to hear your thoughts in the Comments section! Thanks y’all!