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.

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

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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 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?

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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.

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.

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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.

A Poem for Special Teachers!

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

Sam and One of Her Awesome Special Ed Teachers

Teacher Appreciation Week is around the corner. Though I believe ALL teachers are invaluable, I am giving extra props to special education teachers. Surprise, surprise! :)

They aren’t just teachers. They are physical therapists, speech therapists, occupational therapists, researchers, nurses, and our children’s cheerleaders! Their patience, creativity, organization, ability to accept and understand the differences in each of our children and their ability to motivate, identify, appreciate and celebrate small victories are what make them different from the rest! Few things are more rewarding than knowing you have made an impact on the lives of children who are struggling to reach their full potential.

Two years ago I wrote this poem for Sam’s LIFE Skills teacher and paraprofessionals, printed it, framed it and gave it to them as a gift. It was written from Samantha’s perspective. I hope you like it:

You greet me every morning with a great big smile
Help me out of the car
Even if it takes a while

I am a little girl who cannot hear or speak
But still you understand me,
Week after week.

I have more challenges than most other people, you know
But you never give up on me
Even if my progress is slow

You help me with my daily life skills
Help me to succeed
Teach me how to sing and play
Adapt it to my special needs

I am strong and happy
I like to giggle and tease
Sometimes I may even drop down on my knees

You work very hard everyday,
Help me learn and grow
You are patient, kind and loving

This I wanted you to know
It takes a special person to be a teacher like you
And my Mommy and Daddy are grateful
For everything you do!

Happy Teacher’s Appreciation Week!

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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.

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.

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Acceptance of Different

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

There are many things to accept in this world. We must accept different people, different cultures, different religions, different points of view, different methods of accomplishing tasks, different schedules, expectations, rules, directions, likes and dislikes and the list goes on and on and on.

In our house, one darling really needs help with accepting different expectations and different methods of accomplishing tasks. She likes sameness—it is comforting to know how and when things will be done. However, as stated above, this is NOT how life really works. So, I am challenged daily to help her embrace and enjoy flexibility. :) To this end, I made up a song/chant with her in the car the other day.

I wrote a song to help IM deal with adjusting her evening schedule to include sitter time. She loves her sitter but still struggles with differences in routines and how things are done. All things should be done Momma’s way, don’t you know?! :) So, here it is.

Izzy’s way, Izzy’s way
I like to do it Izzy’s way
Sometimes it’s dif-fer-ent,
But that’s O. K.,
I LIKE to do it Izzy’s way.

We also talk about how this song can help at school, at PT, at doctor’s appts, where ever things are different—we can sing this song and make it a good day. :) It helped that night and another night too. :)

I bet you know some one who could use flexibility training too. :)

What will you do today to embrace, celebrate or help some one with differences?

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