Welcome to the World Abigail

Our family was truly thankful yesterday on Thanksgiving. We received a new bundle of joy!! 8lbs .5 oz, 20 inches long. Now thats a nice size for a Butterball :)

Now THAT'S Comedy

Have you ever had an "I Love Lucy" moment, where your in a situation so hopeless you just throw your arms up and surrender??  Yeah, I just had one of those myself.

Kids came home from school, chaos always begins as they tell me about their day, ask for a snack, and head for the Wii to unwind before dinner.  Shortly after they came home one of the twins staff workers came to pick up a book.  After short conversation I realized that Isaac had messed his britches.  I went into the living room for a second to talk to the older kids again and tell them I was going to change Isaac I'd be right back.  Into my bedroom I find that Isaac had once again dipped his hands into his diaper..

UGH, ok I deal with this so much I feel as though I'm becoming a pro at getting his diaper off while holding his hands and running bath water all at the same time.  So I get him in and rinse off his hands and wipe up his bottom good enough that I'm ready to lift the drain and fill the tub up with clean water to give him a bath.  Within a minute or two of him splashing and having fun, Caleb comes running in.. He wants in on the bath action.  In he goes.  I always take advantage of bath time by cleaning up the bathroom and starting laundry (laundry room is in my bathroom).  They were playing and I was peeking in on them and making funny Peek A Boo noises.. They are getting braver and braver in the tub and are laying on their tummies trying to stick their face in the water.  It is cute... BUT.. there's a big BUT.. both boys have reflux really bad and we thicken all thin liquids because they choke on them, this includes choking on bath water.  I can't thicken the bath water.  As Isaac chokes for the second time I tell them to sit up and be careful.  Finish loading the laundry and turn on the washing machine... I hear really bad choking, I look and Isaac is upchucking in the tub.  I run over and grab Caleb out before any of that gets on him, I make it just in time.  I wrap Caleb in a towel and sit him on my bed.  "Caleb mommy will be right back, hold on" (uh, huh!) and then I go back in and rinse off Isaac and get him settled down.  Out of the tub he comes, drying him off and sticking a diaper on his butt and I hear "MOM CALEB JUST PEE'D ALL OVER THE COUCH!!"  You've gotta be kidding me right?  UGH

So in a matter of about 15 minutes I dealt with Poop, Puke, and Pee all in a bad way... LOL  These are the days that remain stories for years to come :)  Oh by the way, they are both fine and eating cereal and watching tv like nothing ever happened, even now they teach me that hey, its no big deal mom.

Any good ideas on how to get pee out of a couch cushion that does not come off??????

Excitment Builds

Today I am running around finishing up errands and trying to tie up loose ends so that Tom and I can head out tomorrow for Orlando.  We are heading to The Arc National Convention to soak in one day of good information and bring that back to our local chapter to hopefully be able to grow from it.  The Arc of Jefferson County is actually a large local chapter for the little rural community that we live in.  I am proud to be a part of it and hope that we continue to do good by the people we serve.

I failed at the 31 for 21 challenge... I wasn't able to blog the last two or three days due to the twins being ill, remodeling a bathroom, and figuring out last minute costumes for the kids to wear to school for their Halloween Party.  I have to say, I totally cheated my way out of taking the kids Trick or Treating this year.  Camille went with a friend.  Tristin never put together a costume, and Elijah... well Elijah is easily bribed :)

I offered him a WHOLE PACK of those mini Kit Kat bars (for $1) that he could have all to himself and he was tickled!!  So we hit three houses right here on the hill, great grandma, grandma and papa, and Aunt Sue and Uncle JR and he was happy.  Now that's my kinda kid...LOL  Honestly, I used to get all decked out for Halloween.  Decorating, sewing costumes from patterns just to be different, cool treat bags, you name it.  But since the twins have been here.. October is just a busy and emotional month for me.  Its their birthday, but I still remember how devastating the whole month of October was for us when they were born, not because of their diagnosis, but because of their prematurity, the NICU stay, Isaac developing NEC.  It somehow made everything else seem unimportant.  Now it seems as though I have found out that my kids survived without going crazy getting tons and tons of candy from strangers, I have saved on a dental bill, and its less chaos.  Who couldn't use a little less chaos in life these days?

I am so Thankful for my children.  For them just going with the flow much like I do these days.  I am Thankful for people helping Tom and I out so that we can attend a conference and be away from our children for THREE WHOLE DAYS.  I am nervous to be gone from the kids, yet anxious to spend much needed time with my husband.  Raising five children, two with special needs, tends to take adult conversation out of the relationship sometimes.  I hope we think of things to talk about :)

31 for 21: Thankful Thursday Our Girls Nite Out

Often times trying to get away for a night of fun activities is so difficult to do.  Tonight I found a way to have a girl night out.  There was a local church here in town hosting a concert by Meredith Andrews.  I have been hearing some of her songs on the radio lately and loving them as I have really related to some of the words.  When I heard she was coming to town I had to go.  This was the first concert for Tristin and Camille both and I am happy to say they both left there with a CD signed by Meredith and they loved the concert.

Music is such a struggle here at the house lately.  Tristin is 13 and wants to listen to all the Top 40 Music.  I "the mean mean mommy" do not approve of alot of the songs and make her turn it off.  I have been trying to get her interested in more Christian artist and I'm hoping tonight was a good step in the right direction.

When she first watch Meredith Andrews on YouTube to decide if she wanted to go see her she said "Mom, she's so pretty" to which I replied "Do you think you can't be pretty and a Christan?".  That made both of us giggle but it opened up a great conversation between the two of us.

I feel so caught up in just tending to the twins these days.  Their many therapies, feeding them, bathing them, keeping them entertained, that I feel like I'm losing precious time with Tristin right now.  As soon as she turned 13 the teenager attitude kicked in.  That VERY same day!!!  Anytime I can bond with her is a good time.  I enjoyed both of my girls tonight.  I pray that something may have been said or done tonight to open their  hearts more to following the Lord in their days to come.  The older they get, the more nervous this mama gets to let them go off and make all their decisions without me.  Its scary in one aspect, but exciting in another knowing that I have faith that they have a very bright future ahead of them. 

Thanks Girls!!! Luv Ya XOXOX

31 for 21: Wordless Wedensday ~ More Oldies But Goodies~

Isaac

Silly Boy

Caleb

Peek A Boo!!

31 for 21: Trying to make a difference

When my boys were both born with Down Syndrome it kind of gave me a kick in the butt to share my story with everyone and to really learn what it means to advocate for my kids.  Because of this I actually bumped into an opportunity a year and a half ago to become the Executive Director of The Arc of Jefferson County.  I was looking to start a support group for parents who had children with Down Syndrome.  I called someone from The Arc and she said "Now why would you want to limit it to just Down Syndrome, as parents of children with special needs we all go through alot of the same things."  That really struck me.  I gave it a thought for a day or two and I couldn't come up with any arguments as to why I would want to limit myself for a support group.  We truly do attend more doctors visits, get our children involved with Early Intervention, introduce them to the world of therapies, stress over things we wouldn't if we had healthy children, worry about the future, learn more acronyms than we would have EVER cared to have known in a lifetime in about two years time, and most of all... we seek out those that have been there-done that and hope they can offer encouragement and support.

I accepted the position of Executive Director and have not looked back.  I am training to be a parent advocate.  To learn the Right and Regulations of parents within the school districts.  I am wrapping my brain around the many many support services there are out there and trying to make note of anything that I think I need to know to offer to someone else.  I am learning more and more about The Arc and their role as being a leading advocacy group in the United States.  I am loving the fact that just by stepping into this position by accident I have a facility already established that I can bring trainings into, hold picnics and playgroups, and help this organization grow.  I don't know just how yet, but the possibilities are there, I'm excited about them, and with God's hand it in I pray that people WILL someday know who The Arc is and what they do.  I'm still learning myself, but I am happy to be a part of them.

I have just recently also joined forces with The Mentor Parent Program, Inc.  I am totally excited about learning about them too.  Things are going well.  I do need to take a breath and make sure that I am not letting my 5 kids childhood slip away from me because I am being to busy with other things.  One mindset, is that I am doing this to improve the lives of our boys.. And the other is being fearful that I won't matter as much in the lives of others like I do in my childrens eyes..  Its a struggle right now, but one that I keep plugging away at until I figure out a schedule that will work for everyone.

I am totally EXCITED that Tom and I are heading to Orlando, Florida to Walt Disney Resort a week  from tomorrow to attend one day of The Arc's National Convention so that we can both learn together more about The Arc and grow together in knowledge.

And to think................if I did not have children with Down Syndrome, I would not be a part of these two amazing organizations now would I??

31 for 21: A story from a sibling who has a brother with Down Syndrome

I had to share this article today, its from a local girl, Natalie Bonavita Spencer, whom I've never met before.  She grew up here in DuBois yet I have never had the honor of meeting with her.  I met her online ironically a few years back.  This was posted on her facebook today and she said I was allow to repost on my blog.  Her story appears in a book I truly want and need to get soon called Gifts 2 and she is featured on page 77.

In September of 2008, I submitted a story two nights before the deadline.  The story was about Greg and I and was for the book Gifts 2: How People with Down Syndrome Enrich the World, edited by Kathryn Lynard Soper.  I had Matt and my friend, Adirenne, edit the story via e-mail and submitted my story for hopeful selection into the book.  Not too long after, I learned that my story would be included in the book and started the editing process.  Just over a year later, Gifts 2 was published, right around Greg's birthday in October 2009.  This book, along with the first Gifts book, provide first hand accounts of what it's like to live with someone with Down syndrome, from parents to siblings to educators to friends.  Below is the story I wrote for Gifts 2.

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Subtle Wisdom
By Natalie Bonavita Spencer

I have never known life without Down syndrome.  From the day I was born, it was everywhere.  When I wanted to play with toys, Down syndrome was there.  When I wanted the attention of one of my older siblings, Down syndrome was there.  When I went to school, to the baby sitter’s, to the mall, to Grandma’s, Down syndrome was there.  But I never saw it.

Gregory Joseph was born in October of 1977; I was born three-and-a-half years later, the sixth and last child to join our family. Throughout my teen and young adult  years, each member of the family has told me how they reacted to Greg’s birth and diagnosis of Down syndrome.  My mother was able to fully accept Greg within the first few weeks following his birth, while my father admits it took him six months to see beyond the Down syndrome and finally “see” Greg. My four older siblings, who were between the ages of eight and twelve, each reported an adjustment period. I, however, can’t remember when I first realized Greg had Down syndrome. He was always just Greg.

What I do remember is having a brother who would play Barbie’s with me and watch the movie Annie with me over and over, singing along with all the songs.  I was the member of my family best able to understand Greg’s “language” and would often interpret what he said for the rest of my family. He may have looked and sounded different to the outside world, but not to me.  His tongue sliding out of his mouth when he was concentrating or tired; the “W” position he sat in, with each leg bent at the knees and each foot touching its corresponding hip bone; his full-body laugh, which prevented all sound from escaping and left only a big smile and a shaking body—these were all parts of Greg, not the Down syndrome.  I saw him no differently than I saw my older siblings, or how they, in return, saw me.

As I entered my teen years, Greg and I were the only kids at home, as my older siblings had all married and started their own families.  I found myself realizing that I didn’t have a typical teen sibling relationship with Greg. I never had to fight for the car, as Greg does not drive.  I never had to fight to watch what I wanted on TV, as we both had our own TVs in our bedrooms.  I never had to fight for the phone, or the living room when friends were over.  There were times I wondered what it would be like to have a “typical” sibling close to my age, but this was my life, and it was okay. Granted, we had our share of times where we bickered, as only siblings can – like over who would get the last Oreo cookie.  During these times, Greg would get mad and storm out of the room, only to come back a half hour later with the most somber look on his face, sighing deeply, and saying “No happy.  Sorry.”  Greg made it easier to let go of some of the teen angst that we all experience.  He taught me that it is possible for someone to give a genuine and heartfelt apology, then move on – a lesson I’m still trying to apply today.

Greg also taught me that it is more than okay to accept someone despite how he or she may look or sound.  It’s easy to judge a book by its cover, but those who do so may miss out on seeing the person beyond the difference or disability. In our home, we get to enjoy Greg’s tradition of calling our father every April 1st, tell him to look at the snow outside, and yelling “APRIL FOOL’S!!” while giggling. We’re aware of things we normally wouldn’t be interested in, such as WWE wrestling and Power Rangers. We watch Greg get up each morning and independently get himself ready for work, from showering, to dressing, to shaving and packing his own lunch, and finally getting himself on the bus, all the while talking to himself and planning out his entire day for all to hear.  We understand that he can find his favorite show on TV at any given moment, despite not being able to tell time.  We realize his abilities far outweigh his disabilities.

Now, as an adult early in my career as a speech-language pathologist – a career I wouldn’t have known about or considered without Greg – I appreciate the subtle ways Greg has affected my life.  He has shown me how to fully accept people for who they are – something he does very easily.  He has taught me that there are many different ways to view a situation and to express yourself.  Without me realizing it on a conscious level, Greg has influenced how I view my students, many of whom come to me with limited speech and language skills due to a diagnosis of Down syndrome, autism, or overall developmental delay.  I know these children each have many abilities that are known to their parents, siblings, grandparents, and extended family members who love them.

Greg has taught me by example that if you can’t make yourself understood the first way you try, you try another method. This has helped me to help Robbie, who is nonverbal, my height, has the strength of ten of me when he becomes upset, and has autism. Robbie enjoys books and puzzles, and can turn on and navigate through a computer better than most adults I know.  He can run faster than I can down the hall and has a great smile.  He is an intelligent boy who is learning how to express himself nonverbally. However, he becomes incredibly frustrated and sometimes aggressive when his wants and needs are not met on his timeline.  Greg’s speech is fairly unintelligible to the unfamiliar listener, and like Robbie, Greg becomes frustrated when he is not understood after a few tries and will occasionally give up.  But more often than not, Greg will take a few seconds and will figure out another way to express what he was trying to say.  Through Greg’s living example, I am aware that although Robbie may not be able to tell me what wants using clear, precise words, that doesn’t mean he can’t tell me another way, either using sign language, pictures, or by taking my hand and showing me.  When Robbie does this, I see his frustration level decrease, just as I do with Greg when his thought is understood and he looks at us all as if he is thinking, “what was so hard about that to understand?”

Because Greg can’t always tell us what he’s thinking or feeling, some may think he does not understand some of the world around him.  My understanding that this isn’t the case has enabled me to help Kiara, who like Robbie is nonverbal.  When I first started working with Kiara two years ago, she was very difficult to engage, barely looking at me when I encouraged her to sign “more” or wave “hi.”  Kiara was very lax in all areas, physically and cognitively.  Then, halfway through my second year working with her, something started clicking.  Kiara started establishing eye contact more frequently, interacting with adults on her own for brief periods, identifying vocabulary, and initiating requests for objects she wants by pointing or gazing.  She began to imitate some sounds and vocalized more audibly.  She would become upset if she couldn’t write her own name.  She also showed us she was very interested in how things work: she would make sure a zipper is zipped up fully, and tried to take apart toys if possible.  She also had a knowing smile when she is doing something she knows she isn’t supposed to do.  Because of Greg, I know that just because Kiara can’t verbally express herself doesn’t mean she’s incapable of understanding when someone’s feelings are hurt, or when someone is mad or sad.  Kiara, Robbie, and Greg understand much more than you might think at first glance – just give them time to show you in their own way.

The subtle wisdom Greg has shared with me is truly significant. It has affected not only my life, but the lives of others. Because I grew up learning from Greg and realizing he is much more capable than not, I look for what my students and others in my life can do. I am willing to give my people the benefit of the doubt more readily because of him. I am grateful that my life has always included Greg as my brother, who has taught me so much and influenced my life in so many wonderful and positive ways – some of which I’m just beginning to understand.

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Natalie lives in Pennsylvania with her husband, Matt.  She enjoys her work as a speech-language pathologist.  Her brother, Greg, lives in Pennsylvania with his mother and works five days a week.  He is planning to move into a group home as soon as possible, and will expect a phone call before visits.

Greg's birthday 2008

Christmas 1982