Tag Archives: 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 . . .

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.”

 

What Is Special Needs Life Coaching?

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Life coaching has been around for a long time. A Special Needs Life Coach has been specifically trained to support families who have a family member with special needs and the individual with special needs as well. A Special Needs Life Coach functions as an extension of the family as many families simply cannot do the work alone. The coach and the family decide what role the coach will play in the partnership. A Special Needs Life Coach is dedicated to improving life quality for persons with special needs and developmental disabilities and their families.

One thing to remember is that a Special Needs Life Coach is not a therapist, teacher or counselor. The involvement with a family is usually specific in nature and designed to meet a particular goal and action plan. A Special Needs Life Coach can assist with research, problem solving, connect the family with resources and create and facilitate a Circle of Support.

How You and Your Family Will Benefit From Working With A Certified Special Needs Life Coach

When we became parents, we didn’t receive a user manual with that beautiful little bundle of joy in our arms. We certainly didn’t receive a “How to Live Your Life and Raise Your Child with Special Needs” manual either when we received this news.

Many times this can be overwhelming. Most of us did not imagine becoming a parent and being directly responsible for our child for theirs and our entire life. Many of us like to think we can do this by ourselves and that people will think less of us if we ask for help. Asking for help is a sign of strength.

You may not be clear about why you want to have a Special Needs Life Coach, you just know you need help. Your Special Needs Life Coach will help you gain clarity about why you want help.

If you want to form a partnership with someone who is an extension of your family, someone who inspires you and enriches your life, someone who can do the “digging” for you; then working with a Special Needs Life Coach will be a positive experience for you.

Does Any Of This Sound Familiar?

Do you crave simplicity?
Do you feel overwhelmed with what step to take next?
Are you stressed out all the time?
Do you feel you, your family or your family member with special needs has untapped potential?
Do you feel inadequate when at doctor’s appointments or in IEP meetings?
Do you have an overflowing to do list of items to look into or research?
Is your greatest worry and fear what will happen to your child when you are no longer here?

If you answered yes to any or all of these questions, a Special Needs Life Coach can help. Find one that suits your personality and style. If that seems like me, you can learn more here or contact me here.

Different iz Good . . . Spread the Word

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It’s time to begin unveiling The Turning Views Foundation and the Different iz Good™ movement.  Those of you who know me know that I’m Mom to Lillian Darnell, 9 yrs old, and Thomas Darnell, 4 yrs old.  Lillian has a Chromosome 18 abnormality called 18p-.  The  main way in which this manifests is that Lillian is speech impaired (she’s about 90% unintelligible). Lillian uses an iPhone with an AAC Application called Proloquo2Go to speak.

Turning Views Mission is To Empower Those With Genetic Differences by giving them a voice, helping them to be a part of the conversation like NEVER before! Turning Views Slogan is Different iz Good . . . Spread the Word!

Our main goal is to provide nonverbal or speech impaired children with an iPod Touch or iPad with the Proloquo2Go AAC Application (or similar) installed and all needed accessories.  In addition, to train caregiver and/or the child how to use the device.  Another goal is to hold workshops in conjunction with schools and speech therapist to educate regarding this technology.

This device and application are life changing in an unbelievably good way for the nonverbal and speech impaired.  Insurance companies and Medicaid do not cover these.  The alternative up to this point have been heavy, bulky devices that cost anywhere from $7,000 – $10,000.  One can have an iPhone or iPod Touch with the Proloquo2Go application installed and all needed accessories for around $600 – $1,000.

One additional major aspect of the Turning Views Foundation is to educate how technology combined with Social Networking sites improves quality of life for special needs children ~ especially nonverbal and speech impaired children. The way in which we communicate and conduct business has fundamentally shifted and changed forever.  It is my opinion that the World has shifted in such a way to include the speech impaired like they have NEVER been included before.  We are no longer solely communicating with our mouths and voices.  A large portion of the population is communicating using technology and social networking sites.  The speech impaired are now able to be a part of the conversation like NEVER before.  Their community and those they can engage with, socialize with and conduct business with has grown exponentially.  A second phase to our mission is to facilitate the making of entrepreneurs of those special needs children, teens and young adults who choose to pursue this exciting venture.

Different iz Good . . .  Spread the Word ~ we will be rolling out tons of DIFFERENT and fun ways for y’all to help spread the word.  I invite anyone who knows a special needs child, teenager or young adult (and even they themselves) to post a video reply on the Different iz Good YouTube channel telling us why Different iz Good, Different is Beautiful and Different is OKAY or what it means to you.

I believe Lillian is different for many reasons.  She is a special young lady who shines like no other and has a beautiful inspiring energy about her.  She is here to teach me and the rest of us some lessons.  One of which is to embrace technology and the shift in the way we communicate or at least approach with an open mind to how life changing this is for some of those amongst us.

Spread the Word Y’all ~ Different iz Good!

I want to steal a  bit of space here and thank a ton of special wonderful motivating and inspiring people for encouraging me and being a part of the creation and birthing of the Turning Views Foundation and the Different iz Good movement.  First, and foremost, Susan, a fellow 18p- Mom.  When I came across the phrase “different is good” in something she had written about a year and half ago, I asked her at the time if I could use that phrase on t shirts.  {Thanks Susan ~ you are a beautiful, smart and amazing Mom to IM.} It has since grown into the slogan for this 501(c)3, Turning Views Foundation.  My wonderful and supportive family who at times, I’m sure, wonder if I’ve lost my mind!! My Chromosome 18 Family ~ having y’all there means more than could ever be expressed in writing.  My eWomenNetwork Family ~ Love y’all to pieces – many times y’all are my glue and facilitate my Glow!  My friends from Oaklawn Junior High (Houma, LA – way down in da bayou) ~ I’m blessed to have y’all in my life!  Friends from my past and my newest friends and supporters.  Thanks a million to all of you!

A Moment of Defeat

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On Wednesday, I watched my daughter, Lillian, as she got off the school bus, struggling with her backpack and walking to her destination in the back of the school.  My heart sank as I stood watching all the other kids bouncing around running and walking normally with their backpacks with not a struggle in sight.  Tears welled in my eyes; it was just one of those days.  She absolutely refuses to wear a backpack on her back and thus ends up carrying it by the little loop on the top.  It’s almost as big as she is.

As I drove home, it seemed as if time stopped for about 15 seconds and I felt so completely and utterly alone.  I chose to feel sorry for myself for a minute and welcome a wave of defeat ~ sorry that I was not blessed with a “typical” little girl.  A little girl that a mother can share life’s little moments with, talk with, have an actual verbal conversation with, hug and snuggle with, watch grow and blossom like most other girls.

I and moms like me have a different life with our daughters.  We watch them struggle with something as simple as carrying a backpack to class, struggle to speak and talk in a way that can be understood with mounting frustration because their little mind is overflowing with all the right words and phrases; but, the mouth, tongue and lips do not work as they should so we can understand.  We watch them struggle to dress themselves, struggle to open things, cut things, play on the playground.  We must listen to their complaints of tummy aches, this and that aches and not know why and add that to our list to try and figure out.  We don’t have the typical “How’d your day go and what’dya do with your friends today honey” conversations?  Ours are “How was your day today?”  And we get a thumbs up or thumbs down. Conversation over.

Only a minute though . . . .

I have a beautiful daughter who shines like no other.  She has a warm loving heart.  AND she is one stubborn hard headed little lady.  I am blessed beyond blessing that she is stubborn and hard headed.  This means she keeps on trying and keeps on trying and doesn’t give up as quickly on whatever she is trying to accomplish.  I have had moments with her that made my heart feel as if it would burst with happiness and joy.  When a speech impaired child tells you for the first time “I Love You” and says “Momma” for the first time, it is a feeling like no other.

This beautiful little lady, who is a self proclaimed fairy, will and does touch the lives of whomever she encounters in such a beautiful way that cannot even be described.  I am her mother for a reason and she my daughter for a reason.  Lillian has a beautiful soul and had some lessons to teach me and will continue to teach me.  She does at times help me to stay grounded.  I find myself wanting and feeling I should be doing more for Lillian; but know that whatever I need to do will happen as it should and I should not force anything.

It is my belief that I need these 15 minutes of feeling sorry for myself and moments of defeat to enable me to come out on the other side stronger and more focused on the path I am on and headed towards.  What about you? Do you feel moments such as these (for whatever reason) are needed and helpful?