Be Non-judgmental of the Shell

There are trials everywhere and we don't know every one's life story, challenged children or otherwise. I also think for those who see the situation no matter what it may be, or hear the story...it's the way they "choose" to react which makes the positive or negative difference in our lives. The same can be said for anyone with children or in any situation. However, the way "we" react, if we choose wisely, can teach a lesson no one ever saw coming.

Here is an example of what I mean ~ minus the unnecessary details:

Julia and I were in a local store doing our usual Friday afternoon shopping. I turned off my voice and was communicating with Julia in sign language. In the same isle we happen to be in, were 2 other ladies. They saw Julia and I signing and ‘THOUGHT” we both were deaf. Which mind you doesn’t bother me at all; however, apparently they were having a bad day and appeared to have some difficulty liking life itself. Their body language and whispering I can assure you was not the most appropriate for these ladies whether Julia and I were in the same isle or not. It was like we had a wide-spread sickness and they didn’t want to catch it or understand why we were even out in the store.

We had gotten what we needed and headed towards the end of the isle to be on our way, Julia was pushing the cart and she politely signed to these ladies “excuse me”, (which they didn’t understand but Julia was being polite) as they stood there looking at her without moving. I stood back for a moment to see how Julia would handle it, she signed “excuse me” again, and they just stood there, looking at her like she had more than I head on her shoulders. Julia was going to turn the cart around and exit at the other end but there were 3 other people in the way. So I went to the front of the buggy, put my hand on it and lead Julia, cart and all out the end of the isle pass these 2 ladies and as I went by them I said , while signing so Julia knew what I was saying, “ excuse me ladies, you have a nice day.” You should have seen the look on their face; you could have knocked them over with a feather! I taught them a lesson that day, one they will hopefully remember and never forget.

Yes I could have been rude and all that, BUT, I learned a long time ago I can make a better impact by the way I ‘CHOOSE, to respond. These ladies are just 2 of several others who needed a lesson in being judgmental, my reaction is always the same and with tremendous impact I might add. As one of my favorite groups, Bon Jovi sings it perfectly... "When the world gets in my face, I say, have a nice day!"  Knowledge is powerful; we must be the one to pull the switch in a positive direction.

Blessings of strength and peace as you travel along your journey ~ Kimberly

Lost and Tired: They Just Don't Get It

original artwork ©2013 Julia's World Project

My husband and I had to redefine our definition of family many years ago. We now have a wonderful support system in place with people “who get it”! For those who have children living with autism or any other developmental challenge we ALL have 1 thing and 1 thing only in common…the label. Other than that, our journeys are each different. This is why blogs like this and other websites created by parents who are caring for children living with a challenge are so important and crucial to survival, emotionally! You need a place to ‘get it out” so to speak and allow others on ‘Similar’ paths to do the same and in doing so this now becomes your family, those “who get it” and support you and understand your frustration, the ups and downs, the challenges, thou we don’t live in “your world” or walk along “your path” we each now for sure the challenges, frustrations, and disappointments along the journey. I often say, “God puts us where we need to be at the time we need to be there with the people we need to be with.” We may not understand it, we may even question it, but we always must remember to stand tall and proud for what we believe and never give up or allow our energy to be drained by events, words or opinions that, if we let them, can become cement blocks tied to our feet! If it, whatever “IT” maybe does not move us forward positively, ignore and move on. What we go through today is preparing us for a tomorrow we are yet to know!

Rob Gorski,
Courtesy of Lost and Tired

Rob Gorski, a husband and father of 3 boys on the Autism Spectrum knows this all too well. He is the creator/founder of Lost and Tired and began his writing career in June of 2010 with his multiple awards winning blog Lost and Tired: Confessions of an Autism Dad. Recently cited as the 3rd most influential Autism Blogger on the internet by Dr. Oz's Sharecare website, where he is an expert on Autism. His mission is to create dialogue, spread Autism Awareness, educate the public on how technology can benefit a special needs family and do so in ways society can relate to and understand. Rob advocates for special needs families and those on the Autism Spectrum, both young and old. He has always loved helping people and personally saved many lives before suffering a major back injury which would eventually end his career as a fire/medic. Rob 'gets it' and writes openly about the everyday journey he and his wife travel with their 3 sons.  

“They just don’t get it” was the topic of a conversation with a good friend of mine the other day. For those who know Julia understand, some days she is more deaf than anything, some she is more autistic than others, some days she is a combination of the 2 and whatever else triggers her that day and then there are days she “seems” to be what our society has deemed a “normal” typical 24 year old. We never know what kind of day we are going to have, you can start off down one path and end up on another, or the road map can constantly change throughout the day. But it is our children, who provide us with learning, teaching, strength, compassion, and understanding and unconditional love. While our children are the teachers, it is through them and their journey we travel together that we must share with others by being their voice, there difference maker, we just need to take a moment to listen and learn.

To learn more about Rob and his wonderful wife and 3 boys we encourage you to discover his website, Lost and Tired, you’ll be glad you did.

Mom: We Love You!

image background courtesy of KM Web Designs

The Sweet Cocoon

Families with medically fragile children are often overwhelmed with their child's illness, doctor visits, doctor bills, unexpected complications, red tape, mountains of paperwork, in addition to the everyday stresses of working and taking care of a family.

Picture courtesy of
The Sweet Cocoon

Amanda, mother and advocate for her daughter, Marlowe, knows this all too well. In her words, “My daughter Marlowe, was diagnosed with Sanfilippo Syndrome when she was 4 years old. I know firsthand that most days there is no such thing as a normal life. My living room was filled with medical equipment and my activities revolved around whether Marlowe was able to participate or not. Family outings and activities were limited. None the less, I feel so very blessed to have been given such a precious child to call my own. I have and continue to learn so much from her.”

The Sweet Cocoon is a non-profit charitable organization in Georgia. Their goal is to provide a unique experience to families who are overwhelmed and exhausted.Their mission: to provide a place of comfort, peace, compassion and respite for seriously ill and disabled children and their families. While also providing a way for the siblings of the seriously ill and disabled children opportunities to come together, interact, and realize how important, needed and loved they are. We invite you to discover and explore their website for more information on how you can help make The Sweet Cocoon a reality.

"You are a precious caterpillar wrapped in a sweet cocoon,

who'll emerge a beautiful butterfly in Heaven way to soon."

~ Amanda, mother of Marlowe
Artwork © 2013 Amanda B. 

DIGS: Why They Are Important

DIGS, Inc. offers a variety of social and learning to work opportunities for ‘adults’ and older teens 18+ years in age. Support from community partners and volunteers provide ‘adults’ with activities to promote social interaction, creativity, relationship and life skills building among their peers.

The purpose of social events are to provide enjoyable leisure interests for ‘adults’ living with developmental disabilities and/or other challenges the options to enjoy themselves in their community just as any other person with non-developmental challenges.

This in turn creates a venue for a more enhanced quality of life in any language while bringing out the extraordinary abilities in talent these ‘adults’ are gifted, whether it be through art, music, photography, dance, or creative design in the unique one of a kind pieces in garden art, they all have something of significance to contribute to their community and our lives. DIGS, Inc. is making a difference in their community. We invite you to discover and explore their website to find out how you can help be a part of their community impact or to make a donation.

Deaf Reaching Deaf for God’s Word

Today’s post is about sharing and spreading the word. The two sites below are something you must take the time to see, especially, if you have a loved one or know someone living with any kind of hearing loss or deafness. Both of these sites are intertwined and support the need for deaf people reaching and teaching deaf people so they can come to know God’s World….some for the first time.

The first, to explore is D.O.O.R (Deaf Opportunity Out Reach) International, an established not-for-profit organization whose main goal is Deaf reaching Deaf through sharing and teaching God’s Word in Deaf appropriate ways. From 1999-2006, the organization trained 30 deaf people from 48 countries in a Deaf context, using Chronological Bible Storying (CBS). For more information we encourage you to check  their site to learn more.

The second, to explore is Deaf Bibles Project here you will find, a website rich in sign language content from the moment you click the URL. When you click on a country flag there will be Bible stories in that particular countries native sign language. There are 32 Bible stories available and complete with introduction, the story and follow-up discussion in seven languages. The website gives access to over 224 stories - filmed, edited and mastered by DOOR Deaf staff in India and Kenya. Check them out!

Time to Go

These two boards were created so Julia could put a visual with where and when we would be going somewhere. She knew exactly what to expect. She also used them to ask questions about places we may or may not have been going. She liked to explain to her father when he came home what she did and where she went, especially if it was somewhere exciting. 

We hope you have found this series helpful. This is our eighth and last visual communication board in our series for Autism Awareness month so be sure to visit our printable page for a free download. Picture symbols by Mayer-Johnson Boardmaker™ software.

Expecting What’s next

This board was used to let Julia know what to expect next. The visuals helped with regards to what we would be going on during different times in the day. She liked the structure of this board and how it was used. Julia used it a lot to communicate, by expressing what she wanted to do or to reconfirm what was explained to her. She also used the board to ask questions like, “Is it time for lunch? Time to help mommy”?, etc. 

This is our seventh visual communication board in our series for Autism Awareness month so be sure to visit our printable page for a free download. Picture symbols by Mayer-Johnson Boardmaker™ software.

Consistency and Consequences

This chart was created to reward Julia with stickers (again stickers are a huge motivator) for when she did well in certain areas through her day. I had some behavioral issues with Julia in these areas. No matter what I tried it seemed as though the difficulty was not going away. Once I developed this chart I explained to Julia, in a way she could understand, the purpose of the chart and what was expected of her with good behavior in order for her to receive a sticker. I also explained the consequences of not receiving a sticker in the event she had bad behavior. Bad behavior, good behavior was a tough concept for Julia to put her mind around. The whole behavior concept is interpreted differently by each person. (The key to Julia’s success with this chart was consistency in its use and consequences both good and bad from everyone, yes even grandparents) So it was hard going to get the whole understanding of this chart across to Julia. Again the big reward was at the end of the week to take a trip to McDonald’s, which we had to work up too. I started by giving little rewards at the end of each day like, her favorite snack or drink or a ride on her tricycle outside. All of these choices were important to her, so not getting them was a huge deal. This was a lot of work and for Julia it was a great accomplishment. Being able through consistency and sticking to the consequences to help her grow and visually manage her behavior was very rewarding.

This is our sixth visual communication board in our series for Autism Awareness month so be sure to visit our printable page for a free download. Picture symbols by Mayer-Johnson Boardmaker™software.

Stickers and McDonalds

This chart was to give Julia some responsibilities around the house and to reward her for a job well done. I started with four tasks and three days so as not to be too overwhelming for her. Julia loved stickers (she still does) and they played an important role on this chart. She worked very hard to get the stickers so she could earn a sticker at the end of her task completion. This chart worked for Julia because it helped her to be more independent and it always made her feel important and proud of herself to accomplish a task, (what a self-esteem boost). Again this was successful because the motivator was something Julia wanted, the sticker, and at the end of the week on Friday the huge reward was a trip to McDonald's at the time one of her favorite places.

This is our fifth visual communication board in our series for Autism Awareness month so be sure to visit our printable page for a free download. Picture symbols by Mayer-Johnson Boardmaker™ software.