Giveaway!!! Gary's From Grief to Celebration!

As I promised you Sunday, I am giving away a copy of From Grief to Celebration by Gary Bender! On Friday, February 4.

1) Comment here or on the link on our Facebook Page that you want to be entered!!
For bonus entries:
2) Post a link to this giveaway! And tell where!
3) Fan Gary's Blog http://www.downsyndrometeenager.blogspot.com/ tell us that you did so
4) Comment here or on the Facebook page daily until next Friday, February 4.
5) Oh, and of course, Fan me on Facebook or follow me here!!

Good luck!!!!!

Pro LIFE

I'm a little behind, but only by a day.

The anniversary of Roe v. Wade was yesterday. Many of my bloggy friends have posted about it. I have always been adamantly pro-life and I admire all of the pro-life posts I've read. I had it on the tip of my type-writing-tongue to make my usual platform speech...Including the fact that 90% of babies that are diagnosed with Down Syndrome are aborted and how sad that is....it makes my heart break and makes me want to knock down their doors and beg them to change their minds, or give me their sweet little bean-bag babies...and then, it struck me to my very soul that they are not only missing out on a love and insight to their world, but that they are missing out on LIFE. And not *just* their child's. Theirs.

There are more and more tests that are coming out, with earlier and earlier detection. Many of the tests that are supposedly close to 100% accurate have been wrong in both detecting and missing kids with Downs....I am absolutely positive that there have been babies that have been aborted with no abnormalities due to those tests.

I know someone who is currently pretty sure that they are expecting a baby with Downs. They have called on their friends and family to pray that their baby with be born without defect...and I am praying with them...but I pray with a torn heart...and I actually find myself sad. I understand, I mean I REALLY understand, that it is scary and not what you had envisioned for your life... We have mourned the normal and walked the terrifying corridor of massive health problems...but sometimes ...Sometimes I feel genuinely sorry for those who do not have an Elise in their lives. I mean it!!

I wonder sometimes what Elise would be like without the bonus chromosome...who she would be, what she would be like...what she would say...But I always come back to the FACTS.

Elise has made our life fuller. She has made our life more ALIVE. She is the light that illuminates the corners that we would have missed otherwise. Sometimes I regret she was not our first so I could have truly appreciated Gabriel's babyhood...but my excitement when my kids hit their milestones is actual and genuine. I do not take them for granted. They all deserve a celebration.

I feel that God can use dark and scary times to show us "Abundant Life" such that our previous life looks paltry. I find myself echoing the story I heard once. (And of course, now that I want to link it up, I cannot find where I saw it! Give me a shout if you know!!) A sibling once told his family that "everyone should have a baby with Down Syndrome!" And I agree.

She is Pro LIFE, and lives it fully and gives it in abundance!! She is God's little catalyst of joy in my life.

Sometimes I wonder that if we were really living life fully and accepting the abundance that God has to offer, would we even care if our lives were not the picture perfect that is so often longed after? And I am putting my life to this microscope, so don't think I am just sitting here in my perfect life looking down at you.

John 10:10b "I came that they may have life and have it abundantly." Are you accepting that gift? Are you actually as pro-LIFE as you think?

The 5 year battle

I know that many of you are a little upset at me for slapping my kid with medications for her behavior after a short period of time. I just wanted to take this opportunity to say this HAS NOT been a rushed decision. There has been no teacher/school pressure, there has been no pediatrician pressure, no therapists, no principals, no family have pushed us abruptly into this decision. I have been very supported in the dragging of my feet to this point...and have been equally supported that this is the right decision for now...

This has been a long road of about 5 years, where we have been questioning her abrupt choices and impulsive actions.

In the beginning, we chalked it up to her age and immaturity. Which I think was the right thing to do. As the years have passed, we have addressed it in consistency of our reactions, in consequences, and interventions.

(So much so that I witnessed a young extended family member attempt to use it to Elise's disadvantage. He wanted Elise to move so that he could have her spot in front of the TV, and yelled that she hit him. Unfortunately for him, I was spying to make sure that she was behaving as she should. She was across the room from him and had not moved...but he knew that if she hit someone, she would be instantaneously moved and receive consequences. And by extension would leave her spot open for the taking!)

Recently, the consistency of consequences are not keeping her from being abruptly aggressive. So I decided to make diet adjustments hoping to make an impact on her behavior. I have met people that swore by it and I've read that sometimes diet can play a part in ADHD. So I took out most of the refined elements of her diet (her cracker choices, while allowed, were made whole grains only). Fried foods have been completely eliminated and I have pushed as much as I was able in her fruits and vegetables (she still struggles with sensory issues).

Unfortunately, while I am pleased with the over all impact this has made on the entire family's health, it did not make the tiniest dent on her behaviors.

She has hurt other students at school. And wept copiously that they were hurt. While she comprehended that her actions were wrong, she was unable to stop herself! She is big enough and strong enough that I am genuinely concerned that she will truly hurt someone. Even without that though, her peers fear her reactions.

This is the age when ALL children start to really make friends and learn the social cues so very important and integral to their social development. And it is only more so with Elise. She craves the friendships and interactions with friends...

So after 5 full years of attempting as many different intermediary actions as we could pursue, I was driven to accept that we perhaps needed to address this medically. At the very least, we needed to rule out more severe medical issues that this could potentially be, which could include neurological issues, in the form of possibly migraine headaches and mini seizures or others...

If this was a simple case of ADHD, then we could address it now. And perhaps let her off the medications in the summer or holidays or at a later date and see if the simple improvement of her socializations could impact her choices...or just see if she had matured at all...

So this is what we have done. Because of her heart history of repair for congenital defects and the impact that chemo has on the heart, we chose a medication that is not a stimulant. We also got a complete cardiological check-up which also included a 24 hour heart monitor for one day that would give us a base line to check and see if there had been any detrimental effect on her heart at given intervals. There has been a lot of interaction between her cardiologist and neurologist. And I am quite comfortable with the decisions made and the doctors reactions concerning them.

Elise has been on the medication since Wednesday. It has made a mind-numbing impact on her behavior. She was literally impacted on the first day which kind of scared me initially. She was beautifully behaved from 7-11, at which point she crashed into exhaustion...and ended up sleeping for an hour or so. (I decided that we really needed to allow the medication time to adjust in her body, but at no point would this be an acceptable option. And if this [or any] medication took the "Elise" out of Elise, then there would need to be alterations in the drug or dosage.) The next day the wall happened at 12, then 12:30, and every day she perked back up at about 1 and was perfect until bedtime-ish. At which point she was tired and went to bed quickly and restfully (which has always been a battle!). Today, she never even hit the exhaustion wall and was not aggressive or impulsive.

It has been an amazing turn of events for Elise and I am reservedly enthusiastic. I will continue to monitor her progress and its impact on her closely, but I am hopeful about the impact this may make in her life!

Brag aBout - Gary!

As you know, I posted a Brag aBout form so EVERYBODY could celebrate their kids without feeling the pressure to "Be a Writer". My first entry was, conveniently, someone who I was going to link up this week!

My child with DS, first name and age: Alex - 17 , 18 in June

Any other kids and their ages: Courtney 18, Tom 15

Quickie medical wrap sheet: coarctation of the aorta repair - 21 months, health fine, battling with weight

Recent goals attained? (Within your family or IEP!) participating in sports teams

Any fun stories that you'd like to share? Alex is so proud to be a local celebrity after the publication of her mom's first book - she is signing autographs

http://downsyndrometeenager.blogspot.com/

Gary has a link to buy this amazing book on her site. I got the pleasure of reading it in one of its earliest forms and I can honestly say that this is an excellent book. Both in its camaraderie of sharing and in its insightful wisdom. I so highly recommend this book, I am actually one of the "reviews" on the back... :)

She gave me a couple of copies to share with my friends, and who qualifies better than you lovely people??? So expect a couple of giveaways over the next little while *cough, cough* (like one for sure this week!)

Challenge, if you will accept it!

I posted a very cool giveaway and fundraiser HERE to help get a family the final amount that they need to bring a child from the Ukraine home. Her name is Masha.

This family has already adopted two children, also with Down Syndrome. When they were there helping other children, they felt that God was asking them to bring this girl home, too.

The foundation that is handling the adoption is the very reputable Ukraine Ministries of Oklahoma, who has a particular specialty in special needs adoptions called Eli Project (Please read about them HERE). When you donate the funds are sent straight to them and they are even tax deductible!! If you donate securely HERE, you will also be entered to win an amazing kit of sign language DVDs called Signing Time.

AND I have been given an opportunity to up the ante. If you donate, there is someone who is willing and thrilled to match your donations dollar for dollar, up to $500 dollars!!! Seriously!! If even half of the folks who follow this blog on Facebook and through Google Friend donated a measly $5 to this fundraiser (make your coffee and breakfast at home for one day!!), with the help of our matching sponsor, we could give this family a big FAT $1000 to help them bring their girl home!! Wouldn't that feel wonderful???

The thing is...in order to know the funds to match, you need to send me an email with your name and your donation amount. Okay? I won't tell anyone else, just confirm with Ukraine Ministries so we can match! So, go, donate, email to Tiffany at underwater9800@gmail.com with your amount, and know that your lost coffee went to change someone's LIFE!!!

Friday Guest Blogger - Arthur

Please let me introduce Arthur. A fraternity brother of my husband that I talked into sharing. I particularly craved his perspective. He is not a parent. He has a sister with Down Syndrome. I always want to hear siblings' perspectives because I want to parent all my children with their needs at the forefront. Thanks so much to Arthur for letting me pick his brain!!



"My 29 year old sister has Down’s Syndrome. She still lives at home with both my parents. Mary Sue is the youngest of 6 kids.

She is 5 years younger than me and do not recall when I first realized she was different. I have a memory of being told that there was an issue with her heart when she was born.There was concern about it requiring surgery but that was it. It probably took several years before I realized the impact on my family and myself.

I never ever saw my parents get into an uncomfortable situation with her. I am sure they had discussions about how to handle my sisters Down’s at first but I never saw them. I can only speak to their actions. My parents have been very supportive of my sister. They paid for special schooling during her early developmental years. They were supportive as she made her way through school and graduated from high school. They wanted her to have as many experiences as she wanted. She played a year of softball and has had a couple of minor jobs. My parents take on every vacation they take. From the outside looking in, my sister’s condition affected me more than them (although this is highly unlikely).

I remember in later years of grade school and through high school being uneasy about the perception of my sister which is totally selfish on my part but a reality. I did not know what people would think. However, I realized that was more my personal issue and could no way compare to what my parents must have thought the day they got that diagnosis.

My sister has always been a fun loving person. She has never done anything hateful in her whole life. Mary Sue is fairly functional. For the most part she manages pretty well. She is ambulatory, able to dress herself, feed herself, and even helps do the vacuuming. Cognitively, she functions fairly low but do not remember at what level. She does not speak as much as she used and has drawn a little more reclusive. She loves to write and usually only speaks in short phrases at the most. My dad lets her sign her own SSI checks now. She definitely goes at her own pace. She may stay in the shower for an hour and take an hour to get dressed. She loves CMT and can listen to it all day. And she does it all with a smile.

Now as a family we are making the family decisions being prepared for who will be next caregivers. My parents have recently done a will, thank God. Also, they recently ran into medical treatment issues because she is over 18. This has not been a problem in the past but one hospital was being difficult and wouldn’t draw her blood. Anyway, we have just done the whole Medical Durable Power of Attorney and how my older brother and I will be next in line to look after her financially and medically. My parents said we all can take part in being caregivers but I think they believe my older brother and I may be the most sane (I guess I fooled them). My sister remains a part of my family’s daily life and is included in all our activities and encouraged to participate. I have gown to have an extra soft spot in my heart for Down’s kids, and I think if anyone is around them long enough they will as well. God touches us in mysterious, challenging, and wonderful ways."

Opportunity to give Masha a HOME!

As I stated in my post The Business of Adoption, the adoption of children with special needs is not only generous, it is SO important!! It is a matter of life and death. Actual or emotional...either are just as real.

A Bloggy Friend got a surprise shipment of Signing DVDs and decided to offer them up as a Giveaway/Funraiser for an adoption fund for a friend.

Please donate HERE and give Masha a Home and a Family. It will make all the difference in the world for her!

The Brag aBout Form!

Brag aBout Form

Get Loud about being Proud!

My child with DS (or other special needs!), first name and age:
Any other kids and their ages:
Quickie medical wrap sheet:
Recent goals attained? (Within your family or IEP!)
Any fun stories that you'd like to share?

You can stick to the form or do whatever format you'd like! Just brag, baby!!!

Send your Brag aBout to me with your name (first or however you'd like to be known as) to underwater9800@gmail.com

(absolutely include a link to your blog if you have one!!)

The Business of Adoption

No, my friends, don't panic yet...I am still working on my husband...but it is my prayer to either adopt or get involved somehow in my future.

I know many people who adopt because they cannot or choose not to have their children biologically. I know people who adopt because they feel called to. I know people who adopt because they, like me had their hearts ripped from their chests at some point.

My heart was ripped from my chest when Elise was less than a year old. A good friend, who desperately wanted to adopt and who felt called to, was perusing a flier with available children...and there was a tiny girl, who looked JUST like my girl, staring up at me. It broke my heart that she needed a home, and while I knew that there "was a market" for "those babies" (yes, those were the words offered me by my lovely OB who delivered Elise!) The idea that she needed a home called me.

That was the seed planted...then over the years there have been words said, stories told, and pictures taken that have caused my heart to crave it more.

Practically, my words have been "If I will never be an empty-nester due to one, why not two...?"

On a deeper level, my heart breaks for these children...especially the international situations...because this is the stuff that is going on NOW, not 100 years ago, not 50 years ago, not even 10 years ago. Now. (Even my mama didn't watch/read these...please do...these are the stories of rights and abuses that happen when children get moved from orphanges to institutions...and perfectly good people do nothing...)

http://www.msnbc.msn.com/id/26332429/ns/dateline_nbc-international/

http://www.nytimes.com/2009/01/05/world/europe/05bulgaria.html

http://www.nytimes.com/2007/11/13/world/europe/13iht-serbia.4.8319013.html

http://www.soros.org/initiatives/health/focus/mhi/about/about/more

I have further more gotten a day to day education in watching my Bloggy friend pursing her adoptions...

http://myianna.blogspot.com/

and
http://gardenofeagan.blogspot.com/

(specifically: http://gardenofeagan.blogspot.com/2011/01/i-need-300-people.html)

And the idea that I could save even one from this life cuts me to my soul...so...who knows how this will drive me...Right now the only thing that I feel like I can do is donate to http://reecesrainbow.org/ which is an organization that tries to find these babies families...and I can help with their costs...but someday I believe that God will ask me for more...

So those who think that I am a flippin' crackpot to adopt another firecracker when I am treading water with my own...consider the facts. There are babies who need someone.

Why not me?

Kelle Hampton

As you can see, I wear Kelle Hampton's blog button proudly on here...Enjoying the Small Things is beaUtiful!!! In celebration of her Nella's first birthday, she is doing a fundraiser for NDSS. And she decided to include pictures of other beauties sporting the bonus chromosome...Now, I think one of these surprise models is the MOST beautiful and all, but all of them are fantastic photos...go enjoy and donate if you are so led...

Enjoying the Small Things

Businesses that Empower?

A friend posted a couple of her local businesses that support and empower people with special needs. I posted them on the Resources page. If you know of any I'd love to include them on my pages...please contact me with them on our Facebook page or by email (underwater9800@gmail.com)!!

Brag Sessions

Anybody want in on Brag Sessions? I'd love to have you on to tell what stuff your Lovey is up to...ages, recently attained goals, favorite activities, funny stories. They don't need to be deep, they don't have to be well written, all they have to be is something celebratory and proud! You can include pictures, whatever you'd like! Please post your interest on the our Facebook page and I can inbox you, comment here or you can email me at underwater9800@gmail.com...

Decisions

Do I hope that we are making the right decision? You bet I do.

Remember back in October when Elise was making some rotten behavior decisions? Well, she is continuing to have great days, and continuing to have abrupt behavior impulses that she cannot control. She has responded positively to consequences and several programs that we and her teacher have put into play...but she is still struggling to control the impulses.

We don't know if this is ADHD in play. Or if there is something more neurological. So, we decided that we would address the ADHD. I sucked up my desire to avoid medication in favor of friends at school. While she has some friends, both typical and special peers, who seek her out to play, there are also those who actively dodge her, because of the abrupt and aggressive actions. And she has difficulty attending to class and can be a distraction to others.

So, we met with a neurologist to discuss options. He agreed that my arm chair assessment of her actions was correct, most likely being ADHD. We decided to address that, and if that didn't impact her behaviors then we would look deeper at possible migraines or seizures or other possibilities...

He prescribed a medication, but because she is being followed by a cardiologist, they had to sign off on this drug because of effects it may have on her heart....well, 3 weeks later, and we are still trying to iron this out...don't even get me started...suffice it to say, I have a new nurse friend that I know by first name...oh, and I have her personal number too. :)

Elise has a cardiologist appointment today at 1:00pm. Please pray for wisdom at this visit...I'll tell you the whole story when I share the results of this afternoon... I do pray for discernment on the part of the physician for Elise's best and healthiest path...

I want her to make safe decisions with regard to her friends. I want her to be able to attend in class. I want her to maintain her mischievous and bubbly self. I want her body to be safe.

Please pray with us.