NACD Update

We’ve had so many people asking us about I’s progress in NACD and what it is exactly, so today I thought I’d go ahead and do a post showing his latest progress and explaining a little bit more about the program.  First off, here is a short video explaining what NACD is and how it works with all children whether special needs or not.

Our initial interview to kick-start the program was the end of March.  As we waited for the customized program to be written for I, we were assigned some basic compliance training activities to do with him to prepare him for when we began implementing the daily program with him.  It was very apparent at the interview that he was NOT compliant at all.  In fact, I believe he screamed through most of it and refused to let the instructor near him.  So embarrassing!  At least the instructor saw just what we were dealing with since I made sure it was impossible to sugar coat his behavior or abilities. :-/

We followed our instructions for that first week and actually started implementing them with A as well as I.  One of the things on my goal list was for both boys to be potty trained.  Up until this time, it was an impossibility simply because of A’s stubbornness and I’s lack of comprehension.  Last time I tried potty training A, he gave himself a UTI from refusing to use the potty.  That child has a will of iron!  Needless to say, after working with the boys using the prescribed change in training methods, we saw a HUGE difference.  A was potty trained in a matter of days with not ONE fight.  Although we are still working toward potty training I, the change in his obedience has been dramatic.  Tim and I have also changed for the better now that we know how to administer effective correction so that we don’t become overly frustrated.  Never in a million years would I have thought a car seat and timer along with daily compliance training exercises could make such a positive change in our home.

So not only has A been potty trained and both boys increase their overall obedience, I has also learned to:

  • Drink from a cup with no spout, valve, flow regulator or straw
  • Chew his food without choking
  • Say words on command
  • Complete more tasks around the house with simple verbal instructions instead of visual

We are now a little over a solid month into the program, and I am so excited by all the changes I’ve seen.  What thrills me the most is that we are not having to drag I to outpatient therapy every day to get the training he needs.  NACD is training me and Tim how to do all the work with him at home.  Still amazed at the support and expertise of the NACD staff/coaches who are in contact with us daily!

Here are just a few short videos showing some before and afters.

Isaac’s Interstellar Entourage

It’s the middle of July meaning we have less than 3 months left to get our team put together and everyone register for the 3rd Annual Central Arkansas Buddy Walk.  Yay!

This year we are making our team official by coming up with a name and ordering t-shirts for those who want to join us.

Introducing…

Depending on how many would like a team shirt, the cost will be $10 or less.  Will have an exact amount when I place the final order the middle of September.  Let me know as soon as possible if you are interested and what size you need!  Feel free to bring lightsabers and Star Wars masks, you name it. 🙂  I’ve got my eye on a toddler Princess Leia outfit for little H and possibly a child-sized Wookie or Yoda outfit for A.  E and I want to be Jedi. Haha!  This is going to be sooo much fun!!!

We would love for everyone to come join us and show little Iz-O all the love and support possible on this special day.  The registration deadline is September 26th.  For those of you who won’t be able to join us on the walk in person, you can still join our team and show your support financially by making a donation under our team’s name.  Click on the links to print the needed forms.

What is a Buddy Walk®?  The Buddy Walk® was developed by the National Down Syndrome Society in 1995 to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome.  The Buddy Walk® has grown for 17 walks in 1995 to nearly 300 walks planned for 2014 worldwide.  In 2013, more than $12.2 million was raised nationwide to benefit local programs and services, as well as the national advocacy and public awareness initiatives of NDSS that benefit all individuals with Down syndrome.

Funds raised by the Central Arkansas Buddy Walk will go to help Arkansas Special Olympics, Miracle League, Arkansas Down Syndrome Association, the National Down Syndrome Society, and Central Arkansas Buddy Talk.

1st Annual Central Arkansas Buddy Walk (2012)

2nd Annual Central Arkansas Buddy Walk (2013)

I know there are so many other really great causes out there that deserve our attention and donations, but this is truly the most important event for our family since it not only helps encourage and build friendships with other DS families, it is an incredible opportunity to raise positive awareness.  At last year’s event, while setting up the tables at registration, we had people walk up to us and start asking questions about what it was for and other details.  Any opportunity like that to share the joys of DS is a worthy cause.  Just the other day while eating lunch with the boys at Sam’s Club, a little girl got up to leave with her family and turned around to stare more at I and said quite loudly, “That boy is weird and looks ugly!”  My first reaction was anger – at her cruelty and her parents for not correcting her, but then my broken heart overcame my anger.  Ignorance and the lack of compassion is something that we need to strive daily to overcome.  I wonder if that family had ever had the privilege of spending time with individuals with DS?  My guess is the answer is NO for if they had, their lives would have been changed for the better and the cruel words would have instead been a friendly smile and wave.

Spreading positive DS awareness helps stamp out the ignorance and negative stereo types as well as gives people the opportunity to develop compassion and understanding when spending time around those with DS and their loved ones.

Two Mud Magnets

My last post was dedicated to E, so I thought this next one should focus on my two little cyclones – I and A.

I’m glad we took some quick snap shots to memorialize their latest escapade since I’m sure it will one day become one of those “Arrg, Moooom!” moments. Hehe!  When I’m old(er) and really wrinkled I’ll be able to pull these out and get a good laugh for the day.

While Tim and I were outside keeping an eye on the flocks of keets and chicks that we had let out of the pen in order to train, we let the boys play on the slide and swings.  Just when our attention was diverted elsewhere for a moment, they found their way over to the mud puddle and dived in – literally!

They were having such a great time, it was impossible to pull them away and end their merry mud making adventure.

This picture of I cracks me up because it looks like he sprouted the hereditary “Woosley” eyebrows.  Haha!  He just needs a dark cape and hat and he could be a classic storybook villain. 🙂

The brothers that play in the mud together, stick together – and I’m thinking that could be literal when the muck dries!

Praise the Lord for homestead living!  Instead of having to deal with the incredible muddy mess inside the house, the boys enjoyed the freedom of stripping down outside for a little “hosing off” before getting into the bath.  I enjoyed not having to spend the remainder of the evening cleaning mud off every walking surface inside the house!

Let’s just say it was a much-needed outside shower for these two!

Nothing better than getting all messy then getting to run through the sprinkler in the buff especially when the sprinkler has warm water coming out of it from being warmed by the sun all day. 🙂

Haha!  Good memory-making evening with these two little mud magnets.  Even after being hosed off outside, the bath water still turned a murky brown. Eewww!

A Boy, Boots and a Bike

This past week has been an exciting time for E.  Two very important factors came into play and have changed his world for the better.

The first was finding a new pair of rubber boots on the clearance rack while out shopping.  Do you know how hard it is to find rubber boots in the middle of flip-flop season?!?!?!   Flip-flops and homesteading just don’t seem to mesh unless you like the feel of animal droppings and dirt squishing between your toes.  Haha!  Poor E is definitely NOT a flip-flop kind of guy and had worn out his last pair of boots that he received as a birthday present in January.  So much so that his papa had duct-taped them together just so he could continue wearing them outside.  The problem was that they leaked like crazy so any time he jumped into a mud puddle, he would have to change his socks once entering the house.  (I was washing a LOT of socks!)  Considering we’ve had about 4 inches of rain this week, there are plenty of really good puddles just screaming to be jumped into.

2014-06-27 09.35.39 The second was when E finally gained up enough courage to start riding his bike again.  Around the middle of November, I found a good used bike for free.  This new bike was the next size up from the one E had been using but would soon outgrow.  E did very well riding the new bike last year, but when I tried to get him to ride it once the weather turned nice in the spring, he would run the opposite direction.

After months of working to help him regain his confidence, he finally got on and started pedaling down the road.  Even with a couple of spills when trying to turn, E got right back on the bike. Yay!  Now, in between thunderstorms, he can be found outside riding up and down the road like he’s done it all his life.

I asked him recently what his favorite thing to do outside is, and he replied that it’s riding his bike.  I’ve tried to use all of this to help him learn a valuable lesson in trust.   Just as he is learning to trust us when we warn him about playing in the tall grass because of poisonous snakes, he is learning to trust us when we say that the reward will be worth the hard work and effort.

Oh to be a kid again and zoom around on your first “set of wheels” while enjoying the freedom of no adult responsibilities!

World Down Syndrome Day (3:21)

I’m sure you’ve seen at least a few posts from all over the world as we gear up together to celebrate 3:21.  I recently saw this video shared with our Facebook group Buddy Talk and thought I would share it with all of you.  It made me cry!  I hope as you watched that you were able to maybe place yourself inside my shoes and the shoes of  moms like me out there as we’ve all had a similar thought at one time.  Maybe by watching it would help you be able to share an encouraging word with a friend or loved one who is given the diagnosis that their expected baby has Down syndrome.

World Down Syndrome Day is a way that people across the globe unite to bring positive awareness to a genetic condition that affects 1 in every 691 births world wide.  Every year 6,000 babies are born with DS in the USA alone.  Amazing to think that the US is blessed with 6,000 of the happiest people on the face of the earth!  Wow!!!

If you are in the area and want to help bring positive DS awareness and help support a good cause, I would love for you to join us on on Tuesday, March 18, at the Jacksonville, Arkansas, Chili’s restaurant for a fundraiser from 4-10 p.m.  Print this flyer and bring it with you to present to your server so that 10 percent of your total ticket will be donated to the Arkansas Down Syndrome Association and Central Arkansas Buddy Talk.

We are also doing a balloon release on Friday, March 21, 6:30 p.m. at the Big Dam Bridge (N. Little Rock side).  We will be selling blue and yellow helium balloons for $1/each as another small fundraiser for Central Arkansas Buddy Talk to help fund future DS events in our area.  Hoping for a GREAT turnout this year so come out and show your support if you can!

“More alike than different!”

Lemon-filled Olive Oil Lanterns

After a recent conversation with Tim regarding our winter preparations, I started doing some research on inexpensive types of homemade candles or lamps.  Last year we had a horrible snow and ice storm dumping over a foot of snow on the roads and power lines.  Our property is at the end of the line, so any power outages means that we will be the last ones to have our power restored.  This all boils down to us needing to be more prepared for a long power outage.

While Tim works on solving the water and heating problems including installing some different insulation strategies and hand pump, I’m working on lighting and cooking.  Thankfully we have a wood-burning stove and some cast iron skillets so cooking won’t be too difficult. 🙂  The lighting was tricky because we are doing all of our updates on a tight budget.  Hense the idea of making my own candles.

Using what I already had inside the house along with some lemons given to me at church this past Sunday, I was able to spend just a few dollars on some very economical (and pretty) oil lanterns.  Yippee!

For this project you will need:

  • Olive or vegetable oil
  • Lantern wicks
  • Floral wire (or paper clip)
  • Container
  • Lid (optional)
  • Fruit or herb filler

Loosely twist your wire around the wick leaving a small portion at the top in order to light on fire.

Center your wick inside your container then bend the wire over the side to anchor it into place.  You can buy special oil lantern wicks specifically to use with converting canning jars into lanterns, but this way is WAY cheaper. 🙂

Next, slice your lemons to your desired thickness and place them inside your container arranging them in a way to cover the sides without taking up the bulk of room inside the container.  You want to fill it with as much oil as possible.

After you’ve arranged your lemon slices the way you want, carefully fill the container with your oil.  Not only are the lemons pretty but they also help scent the oil so it will give off a soft lemon fragrance the longer they soak in the oil.

Let your wick soak up the oil for at least 15 minutes before you attempt to light it.

The great thing about these little lamps is that they can burn smoke-free for many, many hours.  If the oil starts to get low, just refill.  Also, you can continue to reuse the container and just add a new wick.

Stay tuned for my candle-making experiment!  I’m going to attempt to make some medicinal candles using Eucalyptus Oil and Tea Tree Oil and possibly a bug repellant peppermint candle.  We’ll see…. 🙂

FINALLY!!!

After months of waiting and wondering just when this little bundle was going to make her appearance, she finally arrived on Saturday, July 13, at exactly 35 weeks, 2 days weighing 8 pounds, 10 ounces and 19 3/4 inches long.

Talk about a nerve-wracking pregnancy with a total of FOUR trips to Labor & Delivery and weeks of almost constant labor before she decided it was time to come.

The early stages of the pregnancy flew by since we’ve all been so busy getting settled into our new house while trying to finish its construction.  At four months pregnant, I could still crawl around underneath the house helping to identify leaks and other plumbing issues.  Hehe!  However, by the time I reached week 28 things were starting to catch up to my body.

Our first trip to Labor & Delivery was at 29 weeks then 31, 33 and 35 weeks.   The medication I received at the hospital never really stopped the contractions but would slow them down enough to help keep me from dilating and delivering the baby too early.  Since we had already been to the hospital three times prior to our final visit, you can imagine how fearful I was of it being just another false run.  I was so worked up over the thought, that I tried to wait until the last possible minute to head to the hospital.   I had been up since 1:30 the morning of the thirteenth with strong contractions and decided that before I would wake Tim up, I would get the house clean.  If nothing else, it would either keep the contractions coming strong or they would stop altogether but i would still end up with a clean house.   Seemed pretty logical to me at the time. 🙂

Tim’s mom arrived at the house a little after 3 a.m. to stay with the boys.  Tim and I decided that to be on the safe side, I had better start heading in the direction of the hospital just in case things really picked up speed.  We didn’t want to be almost an hour away when hard labor hit in case we ran into complications.

Around 4 a.m. we were on our way to the hospital with a few short pit stops to make.  We made it to our church (halfway) and I begged him to stop so I could run in and use the bathroom.  Thank goodness for having his keys on him at the time!  Haha!  Our next stop was the gas station down the street from church where Tim parked the vehicle and ran inside to grab a coffee.  While sitting in the truck waiting, I noticed a police car kept circling around the gas station and stopping close to where I was waiting in the parked truck.

After what felt like an eternity, Tim finally made it back to the truck with coffee in hand and an explanation for why it had taken him so long inside the store.  Apparently a lady in front of him in line needed help with finding directions to a certain town.

Well as soon as we pulled out onto the road to get back onto the interstate, blue lights started flashing behind us.  Yes, that’s right!  Pulled over on our way to labor and delivery.  Haha!  The officer was very nice and had pulled us over to inform us that the tags on the truck had expired.  Tim explained that the truck was his mom’s and we were just borrowing it on our way to the hospital.  The officer asked Tim if everything was okay, whereupon Tim calmly explained that we were heading to the hospital to have a baby.  The flashlight beam immediately flew up to shine on my face and extended abdomen.  The officer then urgently told us to get out of there and make it to the hospital as safely as possible.

My original plan was to just have Tim park in the parking deck near the L&D entrance and I would just continue walking up and down the ramps without interruption until I couldn’t walk any more.  Well that didn’t happen because my bladder kept getting a workout from all the contractions so we ended up a few floors down from L&D where I was able to walk back and forth down the hallway in front of the elevators and take a bathroom break every few minutes.

Every time a nurse would see me pacing up and down the hallway, she would stop and ask if I needed a wheelchair or any help.  I would smile and thank her but reassure her that I was completely fine.  Each time we would get  the response, “This must not be your first!”  Haha!  Nope!  Fourth times the charm. 🙂

When things started getting more intense and closer together making walking more difficult, we headed up to the L&D floor where we found a deserted waiting room outside the check-in area.  I continued my pacing in semi-private the whole time battling with myself whether or not I needed to check in.  I did NOT want to go through the whole process yet again if it wasn’t the real thing.  I was so afraid of being stuck multiple times with an IV and the discomfort of the entire process that I was beginning to talk myself out of being in labor.  I was clamming up instead of relaxing and letting my body just do what it was designed to do.

Tim finally jumped in and made the decision for me.  I was admitted to the hospital around 6 a.m. and after being checked and told that I was dilated to 4 cm I was wheeled into an actual delivery room and not kept in triage.  My contractions didn’t peter out this time but continued to build in intensity.  I thought for sure that I was dilating but when I was checked again at 10 a.m., the doctor informed me that I was about 4.5-5 cm.  Ugh!  We were given the option of just allowing the labor to continue on its own or allow the doctor to rupture my water.  Either way the doctor would not be sending me home until the baby was born.  She would either be born that day or in another 24-48 hours.

I don’t know if it was all the mental battles I had been waging the last half of the pregnancy with the fear of the baby being born so early she would have to overcome a lot of physical problems or just the fact that my body was totally exhausted from the weeks prior to that day of contracting every two minutes for hours at a time, but I was WORN OUT!  I knew that if I had my water ruptured I would end up wanting the epidural because the pain would become too intense for me to handle at that point.

I did ask for the epidural but had to have a bag of fluids pumped into my IV before I could receive one.  It took an hour for the fluids to get into my system because my IV port kept clogging.  Then when I was finally hooked up to the pump, I was only given about 10 percent of the pain medicine to see if I would have a reaction.  I did.  My blood pressure dropped drastically within a minute and more fluids along with blood pressure medicine was pumped into my veins as fast as possible.  During all of this, my labor hit transition time and became unbearable.  I had enough pain medicine in my system to only numb the bottom half of my left leg but nothing else.  It was enough to keep me from being able to get up and move around to cope with the pain but not enough to help alleviate it while lying on my back.

The nurse noticed that my contractions were really strong and coming closer together so she asked to check my progress.  She told me that I was still only dilated to 5 cm but was now 90 percent effaced.  Immediately after that I had two huge contractions one right on top of the other.  At the end of the second contraction, I hollered out that I needed to push.  The nurse rushed over to check me again and then ran out the door to grab the doctor.  My body had dilated from 5-10 cm in just under 2 minutes.  Guess my doctor’s original fear that when I delivered it would be extremely fast was right on the mark!

I was able to deliver Hannah’s head just fine but then something happened.  There was a change in the room’s atmosphere and I could hear a tone of urgency in the doctor’s voice when she gave Tim and the nurse rapid-fire instructions.  My bed was quickly lowered so that I was flat on my back and both Tim and the nurse grabbed a leg and started bending it them back like a pretzel.  There was a huge rush of overwhelming pain as I was instructed to push with everything I had.  The pain was so intense at that moment that had it lasted a few seconds more I wouldn’t have been able to control my gag reflexes and would have lost my stomach over the side of the bed.  Thankfully it didn’t last forever and I heard my baby girl give her first lusty cry and saw her chubby cheeks.  It turned out that all the anguish came from the fact that Hannah’s right shoulder had gotten stuck underneath my pubic bone.  Her little body and face were all bruised up because the doctor had been trying as hard as she could to pull her out to no avail.  Hense the immediate call to action to contort my body so that she could literally “pop” Hannah out by jamming her fist down onto my uterus during that last final contraction and push.

Even though this had been the most difficult pregnancy and most painful delivery, Hannah’s post-delivery was the BEST.  Out of my four children, this was the first time I was able to care for my newborn minutes after she was born.  She never had to stay in the nursery or under the heating lamps.  We even got to go home together after only three nights in the hospital.  What an answered prayer and dream come true for me!!!!

I am so thankful for my husband Tim and all his support and encouragement though these last few difficult months.  There is just no way on earth I think I would be able to endure the birthing process without him by my side!

Big brother already smitten with this brand new baby sister.  This was the first time that E got to hold her.  He still asks to hold her every chance he gets. 🙂

All the boys getting a better look at Hannah after being introduced to her.  Now that they are more accustomed to having her around them, even the little ones fight over who gets to hold her next.  They all dote on her and are quick to give hugs and kisses whenever the opportunity arrises.