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.

Being Different Inspires Others

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(Guest post by Monica McDivitt – Monica blogs at Like a Butterfly) We searched for Rodeo Championship BBQ Cook-Off booth numbers 913 and 915 where a rodeo dance was being hosted for a camp in which Samantha participates. The area outside of the … Continue reading

Most Popular Posts for 2011

Spent some time today combing through our 2011 posts to put together a “most popular” list for our new visitors and frequent visitors alike in case you missed something or want to share a great article with a friend. I wanted to include ALL of them as I think ALL of them are awesome and inspiring posts. I took a look at how many comments and facebook likes each post received. So here ya go – Most Popular Different iz Good posts for 2011!

Different iz Just Fine – January 7, 2011

Giving Sam a Voice – February 7, 2011

Symbiosis – February 9, 2011

My Kid Rides the Short Bus – February 16, 2011

It’s the Little Things – April 18, 2011

A Poem for Special Teachers! – April 27, 2011

Just a Little Girl – May 9, 2011

Different is Love – May 24, 2011

Showers, Escalators and Airport Toilets, Oh My! – September 13, 2011

Different is . . . – December 12, 2011

Samantha Enjoys Christmas in a Different Way – December 20, 2011

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.

Different is…

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

Different is…

Different is the loooooooooooooooooong pause after you answer the question, “How old is she?”

Different is the questioning the new doctors have over why this “normal” child is on a liquid diet instead of table food.

Different is checking your schedule for doctor and therapists appointments before you plan a play-date.

Different is your darling explaining orthotics to her friends.

Different is the questions from the school-mates as to why she is acting like THAT.

Different is explaining “words” like IEP and GERD to your friends.

Different is saying; “Sissy, you are sweet I could pour you on my pancakes.”

Different is blowing Daddy hugs so hard he almost falls over.

Different is singing no matter where we are or who is watching.

Different is getting up and dancing in the restaurant when the Latin music moves you.

Different is chatting to the birds and animals on the walk and not noticing or caring who sees.

Different is saying my name is. What is your name? May I have a hug now?

Different is the one more hug, Mommy before you go.

Written by Susan Moran

{Wanna share this with your Facebook Friends? Feel free to “like” it below!  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.

Thoughts from a Momentary Perspective

(Guest post by Sara Jackson Johnson –  Sara blogs at Sara in Between)

Sara Jackson and her Family

I’ve been struggling with some genetic results I received this week for my youngest, which told us that in fact he has two rather than just the one extremely rare genetic disorder. I’m pretty sure this takes him from one in few thousand to one perhaps on his own and while that’s kind of cool, it’s also quite lonely from where I’m sitting, not yet with the head space to learn the new stuff.

So I’ve done some hibernating, ruminating and finally blog-style tantruming and now I’m quietly trying to calm my feelings.

What has helped is catching up on an amazing TV programme shown here in England on BBC1. It was about surgeons at the Oxford Craniofacial Unit who use their skill to operate on children with disorders, malformations and life-threatening conditions affecting their skulls and faces.

These amazing professionals are leaders in their field, with extraordinary skills and techniques and the stamina to perform 7 hour operations. They are artists in helping to break and reform bones in the skull to allow room for brains, to help attach muscles to allow a smile reflex, to perform an extraordinary operation, then attach a brace and turn it a milimetre a day to gradually change the shape of a head and reduce pressure in the brain. What they do in these operations somehow didn’t seem gruesome, because of the humanity with which they held themselves, and the effect is nothing short of miraculous.
What is amazing is that they carry out their duties with an amazing humility and kindness, knowing that what they are doing is saving lives, but also helping people to look less different. To feel less obvious and blend a little more and as such have a slightly easier time of life.

What really struck me was something that the one of the surgeons said and understood about his patients. That parents struggle with these huge decisions while their children are young and have no choice when things are life threatening. But at some point these children become older and often decide that enough is enough. After countless operations the danger is over and only the cosmetic remains which is why some of them arrive at the conclusion that they are who they are. Job done.

I watched with admiration and tears at the humanity of these surgeons, the strength and pain of the parents and the amazing resilience of these kids.

Still days after I’ve watched them I’m carrying around the lessons that they didn’t know they were teaching me when they agreed to be filmed by for once what appeared to be an emotionally intelligent TV crew.

Difference and all it embodies is often far too complicated to put into words, but today to help me concentrate on renewing my perspective, I’ve enjoyed looking around the edges.

{Did you 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.

The Good

(Guest post by Andy Flowe – Andy  blogs at Go With the Flowe)

Andy and Sammie

Eventually, I intend to write about the downsides of growing up with a sibling with special needs (although they usually turn out to be upsides as well, at least in the mind of this unapologetically  idealistic college student).  But first, I want to get a little corny.  Every year, my family packs our bags and heads out to the annual Chromosome 18 conference.  We’ve been to over 15 conferences, held everywhere from San Antonio (the home of the Chromosome 18 Registry) and Plymouth, Massachusetts to Anaheim, California and everywhere in between.   We’ve turned it into our annual family vacation, and we all look forward to seeing our second family at the conference every summer.

The thing that I personally enjoy the most at the conferences has been all of the other siblings I’ve met.  It’s really helpful to talk with others who have experienced the same struggles and joys of living with a sibling with special needs.  We usually find a room away from the prying eyes and ears of parents and sibs, and swap stories, be they about how hilarious, sad, frustrating or just plain annoying our siblings can be.  At the 2007 conference in Plymouth, I guiltily admitted to the other sibs that I had milked up the relationship I had with my sister for a recent college application essay.  My admission was met by almost unanimous laughter from the older siblings, and when the laughter died down they all cheerfully admitted that they too, had played up the “I have a disabled sibling” card in their college applications.  “But,” one friend assured me, “It’s okay, because its all true!”  And I realized that despite how cheesy the essay sounded, it was, for the most part, true.  So without further adieu, I present to you the corny, unedited version of the essay that got me into college four years ago.  Enjoy:

My sister has been and always will be the single most important person in my life. Sammie is 20 years old and she supposedly “suffers” from Tetrasomy 18p, but I’d argue that she’s never suffered a day in her life. Tetrasomy 18p is a rare chromosomal abnormality that causes both behavioral and mental impediments, and Sammie is the happiest, most loving, generous, caring person I know. My mom recently asked me “When did you realize that Sammie was different?” I thought about it for a second, then I thought about it again, and I finally realized that I never thought that Sammie was different, she was just Sammie. There’s nobody like her in the world, and I could not be blessed with a better big sister.  In middle school, my dad and I would get into shouting matches roughly once a week over some trivial thing and we’d have to stop and figure things out when we looked over to find Sammie bawling her eyes out, tortured by our fighting.  My dad and I would each give her a hug and talk to her until she felt better, assuring her that we still loved each other.  Whenever my mom or dad would come home with a new boyfriend or girlfriend, the standard of judgment was always Sammie. If Sammie liked my dad’s new girlfriend, then we all liked my dad’s new girlfriend. She was able to weed out the bad matches and my parents made several romantic decisions based on Sammie. At times, I was jealous that Sammie received more attention than me because of her disability, but I always found myself back in Sammie’s room with her arms around me assuring me that she would always love me. I was invincible within those arms.

Andy and Sammie

I’d like to think my writing has grown a bit since writing this, and the corniness of  it (especially the last line) totally makes me cringe, but I still stand by the substance of it.  At the last few Chromosome 18 conferences, we’ve held a “Sibling Panel“, where a bunch of us siblings get up in front of parents and answer questions about what its like to live with a sibling with special needs.  This past year, after the panel was over, a few parents came up to me to talk, and one told me “Gosh, Sammie is just so lucky to have a brother like you.”  The compliment came as a surprise, and it was definitely flattering, but I found myself feeling a little disappointed that I hadn’t completely gotten my message across.  If there is only one thing that I can teach others about growing up with a special needs sibling, it’s this:  Sammie isn’t the lucky one, I am the lucky one, and there is absolutely no way I would be the person I was today if it wasn’t for her. She pushes me to be a better version of myself every single day, and all she asks for in return is some love.  And I’d like to think that if everyone had a Sammie in their lives, the world would be a whole lot better place.

(Is this an article you’d like to share with your Facebook Friends – Go Here to do that – And Thanks Y’all – Camilla)

Symbiosis

(Guest post by Sara Jackson Johnson –  Sara blogs at Sara in Between)

I walk past this image at least once a day in the park at the end of my street .  I could take a more direct route through to the tube station, but always find my feet walking me this way.  This morning I realised it was time to pen a small note to work out why.


What I see here is intricate and interesting and kind of wrong in the middle of a park full of neat, planned and ordered foliage.  It strikes me every day and I have thought more than once about stopping the park keeper to ask how long it has been there?  Whether the ivy affects the health of the tree?  Is that a stump it’s growing on?  Whether they ever think about cutting it down and releasing the tree of its needy interloper? Or which of them actually came first?

But I never do. Not just because I think the park keeper hates me. You see unlike the other gardeners there with whom I have a happy hello-filled acquaintance, he either avoids my eye with no great subtlety or gives me a grudging smile if he absolutely has to…Anyway, I digress….

I don’t ask because I just love it as it is.  Love that I don’t really know whether it is a stump covered in ivy, opportunistically grabbing onto a tree that was unfortunate to be standing right next to it.  Or that the new tree was planted next to an old thing and they’ve developed a symbiotic need and love for each other.  I love that it makes me slow down, often stop, just to look across and down and up to see whether I can see the join.  Whether the tree is behaving as it should and marvelling at the sheer tenacity of that ivy.

I even enjoy the comparisons I find and the images it puts in my head; about me, my son, his DNA, what a pretty way to see something uninvited become so very…necessary somehow.

However I mostly love that in this picture, the sun is shining down on them both, as it does on us all.  Plain or startling, boring or exciting, healthy or wizened, different or the same.  Not how anyone planned it I’m sure, but glorious nonetheless.

Our Daughters Differences Lead Us to Stem Cell Therapy

(Guest post by Maria Barber –  Maria blogs at Mommy You Know What)

We have a little girl named Lila, who is 4 years old.  Through all of her struggles, she has taught my husband and I patience, perseverance, how to love no matter what the circumstances may be, and how to look at the differences in others as blessings.

Lila has cerebral palsy (CP).  CP refers to anything that affects the brain (i.e. lack of oxygen at birth, abnormal growth, missing segments of the brain that had not grown in the womb, genetic abnormalities that have affected the structure of the brain).  This diagnosis is a HUGE umbrella to fall under, so we continued to search, as Lila’s CP is very mild.  Until last November, when her neurologist read over her MRI from 2 years prior and realized that he overlooked a very important fact.  Lila’s cerebellum is smaller than normal.

The cerebellum controls muscle tone, balance, coordination, learning skills, speech, etc. Her differences have mostly been seen in her physical sense, walking with a walker and not being able to stand independently, and in her speech.  Your muscles control speech, nevertheless, she continues to push through and try to use her words in social situations with her peers and teachers.  Hopefully Lila will one day have the confidence to interact at the level of her peers, and process this interaction much more quickly than today.

These differences, along with the promise of stem cell therapy, have led us on this journey of fund-raising to help her to have a stem cell treatment this year, with the promise and hope for more stability and balance, better control and confidence with her speech, and faster processing to keep up with her peers.

Some of you may be thinking…,”she has abnormal growth in her brain, is it really possible that something can help her cerebellum to regain growth and heal?”  YES, and thank goodness!  When anyone has a part of their body that is growing slower than normal, this means that the blood vessels which surround this area are constricted, not bringing enough oxygen to that area.  Stem cells help to regrow/open up those blood vessels to bring more oxygen to that area and promote growth.  Stem cells have also been known to regrow neurons.  Lila’s cerebellum has a chance to grow and get her back on track in the event that we can all give her this gift of stem cell therapy.

Please check out her blog at Mommy You Know What.  This will explain more about our beautiful daughter, her struggles, her smiles, and our fund-raising efforts.  Please join us on our journey, and share our blog with others who may need to see the positive side of the world of special needs.  The beauty is in the eyes of our special children!

I will be sure to drop in again at Different Iz Good and give you all an update as to Lila’s progress.  Look forward to sharing with you all again :-)

Everybody’s Different

(Guest post by Sara Jackson Johnson –  Sara blogs at Sara in Between)

Why Different iz Good Exists!

Everybody’s Different by Sara Jackson

Every day I look around and this is what I see
Lots of different ways to look and different ways to be
Sammy’s only got a dad and Melly’s got two mummies
Emma’s face is often sad while Tommy makes things funny
Jacob’s hair is curlyish and Angie’s always sneezing
Louis gets up earlyish and Ella’s feet are freezing.
I find it odd the world around us thinks we’re all the same
As I think they might be looking without turning on their brain
So let’s celebrate our differences and how unique we are
And change the record, shout out loud and spread this message far
Because everybody’s different, it’s very plain to see
She and you and him and her and them and us and me!”