Handicap This!

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(Guest Contributors Mike Berkson and Tim Wambach – They blog at Handicap This!) Mike Berkson and Tim Wambach met in the summer of 2001.  Tim was hired to help Mike, a 12 year old with cerebral palsy, as his aide in elementary … Continue reading

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Disproportionate Stick People

In 2nd grade one of Lillian’s team in an IEP meeting said “We are still working on getting her to draw proportional people”. My response “I don’t care that she doesn’t draw proportional people. That’s something special and unique about her!”

Lillian was 7 or 8 years old then. She’s 10 years old now and her people are still different, they are unique, and they are AWESOME!!

Different iz Good . . . Disproportionate Stick People Are Good . . . Spread the Word! -Camilla Downs

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A Glimpse at a Different Family

(Guest Contributor Alisha Marie Peters – Alisha blogs at The Moments That Change Everything)

Being a parent of a special needs child, I know that people often wonder about us. I know that we are often looked at with pity, and this saddens me the most, because we are in on “the secret”…. having these special little souls we’ve been lucky enough to raise has given us an inside scoop on the meaning of  what life is really all about.

Sure it’s hard sometimes, because there are certain things that definitely set us apart from “typical” families….

We spend our money on very different things- therapy, medications, medical equipment, adaptations to our homes and vehicles, special food (formula), countless medical bills!

Taking a trip anywhere is very different…. especially vacations. And I could never dream to take a vacation somewhere with my husband and leave my girl with someone. Couldn’t expect anyone to do the stuff we do…. administering her dozen or so medications everyday, including one by injection. Making her special formula and prepping it for her g-tube because she can’t eat much by mouth and is severely allergic to a lot of foods. And heaven forbid if that tube comes out of her stomach (and unfortunately it does… a lot!), her dad and I are the only ones who have ever replaced it. And then there’s the worry that something would go wrong- when she gets sick… it’s different…. a lot of the time she needs a hospital stay… But we do take vacations…. we just take our girl and half our home with us!

We see our kids get left out a lot…. but that’s why we try harder to make up for that.

But we have learned to appreciate things a lot more. Sure all parents are excited when their kids hit certain milestones, but for us, when a lot of us have been told that there’s a chance our kids might not do these things… then it’s like moving mountains to us.

We also appreciate every moment of every day, because a lot of us don’t know how much time we’ll have with these precious kids. Every day truly is a miracle.

My daughter makes life easier with her attitude. She is honestly the happiest child I have ever known, and being in the education field, that is really saying something! It is remarkable to me that despite the fact that she goes through way more than most would in a lifetime, she still has the best attitude imaginable! Makes it that much easier for me to have a good attitude too.

So, yes we are different from most families….

But, as you can see we’ve come to the conclusion that different is not so bad!

About Guest Blogger

 

This post was written by a guest contributor.  Please see their details on our Contributors page.  If you’d like to guest post for Different iz Good check out our Write for DIG page for details about how YOU can share your stories and tips with our community.

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Samantha Enjoys Christmas in a Different Way

(Guest post by Monica McDivitt – Monica blogs at Like a Butterfly)

Samantha is running back and forth in the front hallway. She is flapping her arms and giggling. I watch, smile and walk into the kitchen to prepare breakfast. Suddenly, I hear bells jingling on the Christmas tree. I look over and see the top of the tree moving from side to side. I stop what I am doing and walk over to the family room to see what Sam is up to. Is she pulling an ornament off of the tree? Trying to sit on or tackle the tree? I enter the room. She is wearing her pink and gray leopard print gown. Her hair is messy but it is pulled back into a ponytail. She is sitting quietly in front of the tree, admiring the lights and trinkets. I know she was probably trying to sit on the tree but all is good. She is safe and happy and that is all that matters.

John and I carefully purchased a new tree this year because Sam had mangled the old tree. After 4 years of being leaned on, sat on and knocked over, half of the lights were no longer operating and the bottom branches were touching the floor. It only took one day before this new tree began to look like the old one, except this one has the multicolored lights instead of the clear ones. John and I figured Sam would enjoy the different colors.

The truth is that Sam doesn’t understand Christmas or any other holiday. She is usually quite easygoing but will run and look for a quiet place to hide if there are too many people around. She will refuse to eat in a large social environment, even if she is at home. For this reason, we miss out on many extended family gatherings. If we do attend, John and/or I have to chase Sam around to make sure she doesn’t grab and eat dirt from houseplants, play with toilet water, break something or go into meltdown mode. I then find myself explaining her behavior(s) to family and/or friends. Though I do not mind educating others about Sam, the ‘chasing around’ and meltdowns are not fun and the only solution to this type stress and chaos is to have holiday events at our own home where Sam can feel safe and disappear into her room if she feels the need to do so.

Sam is sweet, smart, funny and craves her routine. She recognizes that many things are different this time of year so we continue to follow a routine throughout the holidays. I know it sounds dull and boring but John and I must do what is beneficial for Sam. When change does occur we do our best to get her through it successfully. Since Sam is nonverbal and still does not understand how to use communication devices, I often wonder what goes on in her mind. How does she feel? What is she thinking? Is she afraid? I am not sure if these are things I will ever truly know but I have much faith and hope and continue to work with her daily.

For the time being, I know she likes Christmas trees, lights and ornaments. She picks one ornament off of our tree each time she passes and by the end of the night several ornaments are scattered throughout the house and I find myself picking up the same ones every night. I also know that she doesn’t care about presents and never demands anything (except her baths or snacks). It can take several days after Christmas before she is interested in opening a single gift. Tissue paper, bows, tulle, wrapping paper, gift bags are often more interesting than the gifts themselves and this is okay. As long as I see a smile on Sam’s face I know she is content. This is Sam. She is easy to please and John and I are blessed.

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About Guest Blogger

This post was written by a guest contributor.  Please see their details on our Contributors page.  If you’d like to guest post for Different iz Good check out our Write for DIG page for details about how YOU can share your stories and tips with our community.

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Showers, Escalators and Airport Toilets Oh My!

(Guest post by Camilla Downs -  Camilla blogs at CamillaDowns.com)

In July 2011 Lillian and I attended the Chromosome 18 Conference in Indianapolis, Indiana and thought I’d share some of our adventures with y’all!

We had an absolutely beautiful and fun time on our trip together.  Airports are a challenge for us as Lillian has worries and fears and depth perception and balance issues.  So we aren’t going anywhere fast when we are in an airport.  That Mama you see with a frightened looking 9 year old that has a death grip onto said Mama’s arm, hand or any body part she can grab a hold of {sometimes painfully} . . . that’s us!!  Lillian did a fantastic job going through security here in Reno.  It wasn’t crowded and we didn’t feel rushed.  Heck, she even had a ball when she beeped going through the scanner and Mama had to be searched and patted down.  Mama was just so darn happy to get the privilege of having a little ole body massage that early in the morning and at the airport . . . who woulda thought.  My only complaint is that the pat down {aka body massage} didn’t last nearly long enough!

It completely escaped my thought process when reserving our hotel room to ensure the room had a bathtub.  Showers are a “not happening” zone for Lillian.  Ain’t no way she’s getting into a shower!!  I was pretty pooped after finally making it to Indy and we actually had a VERY fabulous corner room with an awesome view . . . I did not want to mess with changing our room.  So, let’s just say that’s the longest Ms. Lillian Darnell has gone without having a bath!!  She did go swimming while she was there and I wiped her down with a wash cloth . . . in my world that’s darn good nuff!!

Our Chromosome 18 events were on the 2nd and 3rd floors.  There were escalators between the 1st, 2nd and 3rd floors.  Another “not happening” zone with this little lady.  I don’t know how many of you have attended conferences in big hotels; but one thing is for sure . . . the elevators move slow as molasses {especially at this one due to one elevator being serviced the entire time}!  I could not talk Lillian into getting on that big bad scary moving stairway thingy just for one little ole floor.  So, off we went to wait for the elevators to ride for one floor move.  I know, I know, you’re thinking why didn’t ya just use the stairs.  Some stairs are okay with Lillian . . . just a few stairs . . . that’s okay.  Stairs inside of a building or even outside like a library are okay.  But, definitely not those industrial stairwells inside of big buildings, you know, the kind that echo and seem to go on forever.

What long trip with our kids with special needs would be complete without mentioning airport toilets?  These have got to be one of the scariest inventions EVER for some of our kids! Hahahaha! Thanks to another awesome, beautiful and wisdom filled Chromosome 18 Mama, we have conquered those darn scary thrones of airport-dom! A few years ago at one of our conferences Shelley Hunt, Mom to Becky and Sarah Hunt, shared with us that she always had post notes in her purse.  She used said post it notes to cover those annoying little sensors so the toilets would not flush unexpectedly.  Lillian felt the need to use the bathroom while we were waiting at the Dallas airport for our connecting flight back to Reno.  We got in the bathroom and she started saying never mind, I don’t need to go. My mind sprung into action . . . “What was that little trick Shelley shared? Oh yes, post it notes.  Oh Lord, do I have any?”.  So I began to search our bag and my purse for one of those magical post it notes.  I finally found one, and only one, marking a page in the book I was reading.  I had just discovered a treasure!!  So Ms. Lillian used that darn airport toilet and we left that bathroom with our heads held high knowing we had conquered that scary flushing white throne!

Showers, escalators and airport toilets . . . oh yes . . . quit the adventure! Seriously, I think y’all can tell I like to have a sense of humor about all this jazz.  That’s me . . . that’s the way I process, I choose to see the humor cause I just don’t care for the alternative.  What do y’all think?

“A sense of humor… is needed armor. Joy in one’s heart and some laughter on one’s lips is a sign that the person down deep has a pretty good grasp of life.” -Hugh Sidey

If you’d like to see more pictures of our Chromosome 18 Conference adventures go here y’all!

{Enjoy this post? Feel free to “like” it below and share with your Facebook Friends by pressing here! Thanks y’all -Camilla}

About Guest Blogger

This post was written by a guest contributor.  Please see their details on our Contributors page.  If you’d like to guest post for Different iz Good check out our Write for DIG page for details about how YOU can share your stories and tips with our community.

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Different is Love

(Guest post by Susan Moran –Learn more about Susan by visiting our Contributors Page)

(©2009 Artwork by Lillian Darnell - All Rights Reserved)

Different is Love

Different is learning love is like a rainbow:

Full of colors and joy-
Full of experiences that upon memory are as colorful as a rainbow,
Full of expectations that upon collaboration are as colorful as a rainbow;
even though the collaboration changes the expectations beyond imagining sometimes,
Full of joy for all of the differences that no one could have predicted and yes, these joys are as colorful as a rainbow.
Different is learning love is like a rainbow, very colorful and full of mystery and joy.

Kaleidoscope

My journey with my darling daughter is like a kaleidoscope. It is a mixture of emotions at levels never before experienced or even imagined. She has taught me that love is joy. Different levels of joy and excitement over “small” things that others take for granted.

These joys occur on HER time table, not on the schedule from some developmental chart or some doctor or teacher’s notion of when is “right” for it to occur.

Love is those first independent steps that we had to wait an “extra year and a few months” for her to take.

Love is the pride that beams from every fiber of her being and through her soul when she “gets it” whatever the latest it is!

Love is the sheer, pure joy when my darling finally, after years of trying, jumps over that yellow bar at PT.

Love is knowing when to whoop and holler at her success and when to celebrate quietly so as not to interrupt the moment for her.

This kaleidoscope love of mine is wonderful. It is so full of color that changes and mixes and is constantly in flux.

I am blessed to have a kaleidoscope love child. Are you?

{Wanna share this with your Facebook Friends? Feel free to “like” it below and share with them by pressing here! Thanks y’all -Camilla}

About Guest Blogger

This post was written by a guest contributor.  Please see their details on our Contributors page.  If you’d like to guest post for Different iz Good check out our Write for DIG page for details about how YOU can share your stories and tips with our community.

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