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.

Beginning of Summer on the Homestead

It’s been a while since I’ve updated you all on our progress here on the ole’ homestead so I thought I would dedicate today’s post to giving you a glimpse into the latest projects and plans we’ve got going on here in Kinnard-ville.

May

While most schools were getting ready to let out for the summer, it seemed like we were actually just beginning.  The plan was to start E in kindergarten this fall, but since he’s been showing a great interest in learning science and reading, we decided to go ahead and start early.  We’ve been staying very relaxed with the schooling schedule and have been speeding along or slowing down as E’s interest grows or diminishes.  If he ends up finishing all the curriculum by fall, we’ll just start him in first grade.  It’s been very nice being able to actually ENJOY doing school together instead of feeling like I’m pulling teeth to get him to do anything.  A and I like to get in on the schooling action too!  Most days when I’m working with E, the two little ones will be either pouring over the iPad working on alphabet or sorting games or sitting at the table coloring or doing puzzles.  When it comes to the iPad, I is turning a little pro!  I’ve even caught him talking (actually articulating specific words – clearly!) when he thought no one was around.  What a stinker!! :-/

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With the hot weather really starting to kick in and with the entire family being outside more to work together, Tim decided to purchase a small pool for the kids to play in while we got projects done around the yard and garden.  Memorial Day was the beginning of the pool fun.

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The end of May was exciting since we received our long-anticipated poultry order.  We ended up with 15 Pearl Keets and 16 Cherry Egger Chicks.  Somehow we were given an extra chick since our order was for only 15.  Not complaining!!  More eggs – yippee! 🙂

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June

Can’t believe June is already half over, but then again it’s been so busy it feels like an entire month has passed.  One of the bigger projects for Tim was taking apart and re-assembling the swing set given to us by a family member who moved to a new house.  The people who bought her house didn’t want the play set since they were bringing their own.  Okay!  This was truly an answered prayer since we had been talking for a while about needing to find a swing set for the kids.  Being a one-vehicle family meant that this summer we wouldn’t have the freedom to go to the park whenever we wanted.  It’s been WONDERFUL having the “park” in our very own yard! 🙂  With the leftover finances for home projects, we eventually would like put a new coating of stain on the entire structure.  I would love to do it now, but there are about a million other projects that take priority over a simple cosmetic fix.

The biggest project on my plate has been to keep the garden alive.  Might not sound like a big deal, but for me it is next to flying a spaceship to the moon.  I have NO green thumb!  In fact, I’m pretty sure it’s as black as black can be.

Tim has been the one to do all the planning and research.  Through all the planning process I watched and listened, but he was the one at the controls.  When he had to go back to working Fridays while his assistant left for maternity leave, it all of a sudden became my responsibility since Tim had no extra free time like before.  GULP!

I’ve been doing all I can to keep the plants alive and to ensure that they are watered every day, weeded (as much as possible) and animals/children kept out.  It was a very big deal when I picked the first red tomato from the vine and used fresh basil I clipped from the plants I’ve been growing in my kitchen window to use in a pot of soup.  SUCCESS!  That day I pretty much felt like I could fit right into Little House on the Prairie. 🙂  I have a long way to go, but at least the plants that did die after the first attempt at planting have been replaced with a second planting that is actually thriving.  We’ve also planted carrots, lettuce and beans and have started planting our peach, apple and pear orchard.  It is yet to be seen if anything will come to fruition with those plants, but I would love for the opportunity to say to my friends and church family, “Harvest is ready!  Bring your buckets and come pick fruit for your families.”  It will be wonderful to have enough food growing on those trees to can applesauce, apple pie filling, sliced peaches and sliced pears to last the year.  What a cost saving!

Tomatoes

Basil

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Squash (smaller plants are from 2nd planting)

Strawberries (Given to us as a small planter from a friend’s garden – they’ve exploded!)

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Watermelon

Cucumbers

Blackberries

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One of the other big projects is to get the path finished with the concrete blocks.  Tim put down black paper to help kill the grass and filled in the low spots with pea gravel so it will be more level.

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Life goes on and we learn more and more about homesteading every day.  The kids are happy and growing and learning right along side us which makes the journey worth so much more.  I still sometimes miss living in the city close to the grocery stores and library as well as friends’ homes, but I am appreciating more and more what an amazing opportunity this is that God has allowed us.  Instead of looking at other homesteads I see online and comparing ours to those well-established places, I have to remind myself that things here are NOT perfect and we don’t have the resources to pour into all the projects we know we need and would like, but we are doing the best we can totally from scratch.  I’m proud of what we’ve accomplished so far!  Not too shabby for two city-dwellers!  Haha!

The biggest thing is watching how I interacts with the different animals.  The fact that he wants to go pet the dog or watch the chicks and keets out in their pen is so far from where he used to be with freezing up and screeching at the top of his lungs because of sensory overload and fear.  He likes to help take care of the animals on the homestead.  In the years to come, I’m sure he will be a tremendous help when we have a flock of goats or even a horse one day.2014-06-19 10.31.06

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Worst Mother Award Goes to…

Either we are the most fortunate parents in the world or the worst when it comes to treating child illnesses inside our home.  When I hear stories from other parents of long sleepless nights staying up with screaming children due to ear infections, I just can’t seem to comprehend what they are talking about.  It’s not like we haven’t had our fair share of ear infections.  Actually quite the opposite!  In the past six months two of my little ones have had ruptured ear drums.  What I can’t understand is that neither one ever made a PEEP!  No crying, no tugging at the offending ear, no NOTHING.

So again we are either extremely blessed or I am the worst mother in the world for not being able to tell that my children are very ill. 😦

Last night I’s left ear started draining like crazy.  I recognized the telltale sign of a ruptured ear drum and called his ENT first thing this morning to have it checked.

After dropping Tim off at the office, all four kids and I headed to the ENT’s office.  With a little bribing beforehand (yes, it works when in a pinch!) we checked in to see the doctor.  Turns out I has a double ear infection with a ruptured left ear drum.  This is the second time in six months that his left ear drum has ruptured.

It’s hard as a mom not to feel this awful weight of guilt on my shoulders because if I had caught it early enough, it would only be infected and NOT ruptured.  I can’t even imagine how much pain he’s been in and never made a sound of complaint other than the typical griping at his brother like normal.

Here he is yesterday while outside playing.  This is his usual look of “I don’t want to do something!”  As a mom I ask myself, “What am I missing?!?!?!”

If you think that look in and of itself would be a clear indicator that he didn’t feel well, here he is just a minute later doing what he wanted to do in the first place – facing away from me playing cars instead of smiling for the camera.  So again, “What am I missing?!?!?!”

Down syndrome has so many different ups and downs to it, but something that many times seems to be a blessing turns into something that makes me want to cry.  I hate that my little boy can’t tell me that he hurts and that he doesn’t even know how to respond to his own pain levels.  As his parents we have to somehow grow even more attentive and observant of his every mood swing or fall because he doesn’t react to discomfort or pain like his siblings.  I’ve heard stories of children with DS who have fallen at school while playing on the playground and go home with broken bones because no one noticed and the children never made a sound.  That’s terrifying to me!!!

Sigh…The journey of learning for all of us continues.  Please pray for little I as his eyes and ears heal from this latest round of infection.  Also pray that Tim and I can grow in wisdom as we endeavor to find a balance of caution and sensibility without smothering I with attention and ignoring our other children’s emotional, spiritual and physical needs.

Parenting is the hardest job I have ever done and also the most rewarding.

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!”

“Loaded” Ultimate Pumpkin Bread

So today’s project included the desire to clean out some of the freezer surplus to make room for the up-coming season’s bounty plus I thought I might be able to get a yummy breakfast or two out of the deal. To my delight I had plenty of frozen pumpkin puree waiting for me. After digging around in the arctic air for a bit I also found bags of chopped apples. Yay for me! 🙂

With the pumpkin puree as my base, I whipped up a batch of Ultimate Pumpkin Bread batter and then threw in the thawed, chopped apples. I could have just stopped there, but still in my “purging” mode my eye caught site of a bag of pecans given to my husband by a co-worker for his birthday this past Friday sitting on the counter. I typically NEVER have fresh nuts of any kind in the house when baking so this was a great chance to try them out in a recipe.

The pumpkin bread recipe is always good, but with the two added ingredients, it turned out FABULOUS. The apples gave it a little extra sweetness while the pecans toned down the nutmeg and added a special nutty flavor all their own. Love, love, love it!!!  Talk about a perfect blend with the delicious pumpkin as the main ingredient.  Oh, and let’s not forget how moist pumpkin bread is…Ahhh…Sweet blissful bites of heaven…. 🙂

I’m very thankful that my boys are both enjoying working in the kitchen with me more and more.  I’s favorite thing to do is sit up on the counter next to me while I talk my way through a recipe and add ingredients.  He is gaining better fine motor skills every time he helps me pour ingredients inside the mixer, and after being shown once can now operate the KitchenAid on his own even adjusting the speed when I ask.

E likes to help me throw things into the mixer as well but his new favorite is helping with the cleanup.  Yay!!! 🙂  Today when I told him I was ready to wash the dishes, he left the cartoon he was watching and ran to get his step stool so he could help.  Let’s just say this mama’s heart is soooo happy and thankful for my big guy.

So here’s the recipe for this wonderful bread.  Hope you enjoy baking this treat for your family too! 🙂

INGREDIENTS:

  • 3 C. flour                                                        
  • ½ tsp. baking powder
  • 3 tsp. cinnamon                                               
  • 1 tsp. nutmeg                                                   
  • ½ tsp. salt                                                        
  • 1 tsp. baking soda                                           
  • 3 C. sugar
  • 1 C. butter, half melted
  • 3 large eggs
  • 2 C. pumpkin puree (16 oz.)
  • 1/2 – 3/4 C. chopped apples
  • handful pecans, finely chopped

DIRECTIONS:  Preheat oven to 350˚F and spray two medium loaf pans with nonstick cooking spray.  In a medium bowl, mix the flour, spices, salt, baking soda, and baking powder and set aside.  In the bowl of a stand mixer with the wire whisk attached, dump in the sugar. Take the butter and put it in the microwave for about 30 seconds, so that it is half melted. Dump it into the sugar. Add the eggs. Cream these three ingredients together on medium speed for about 2 minutes or until fluffy. Add the pumpkin and combine well.  In three batches, add the dry ingredients and mix gently until each batch is just incorporated. Scrape the sides between each batch.  Pour half of the batter into a one of the prepared pans. Fold the pecans into the remaining batter and then pour it into the other prepared pan. Bake side-by-side for about one hour or until an inserted knife comes out clean the top is golden.

Yield: 2 “9×5 loaves.”

A Special Day for Little Man

It’s March again!  Wow!  Time sure does pass quickly when you’re busy. 🙂  For those of you who don’t know, we celebrate a very special day in this month for our little man I and many others all over the world.  March 21st (3/21 – representing Trisomy 21) is World Down Syndrome Day.

Friends from our Buddy Talk group have been busy putting together t-shirts, flyers and a family event to help spread positive awareness on this day.  Some local chain restaurants are even donating 20% of their sales to the Arkansas Down Syndrome Association this day only.  All in all, many people are doing everything they can think of to help spread the word that Down Syndrome is NOT a death sentence!!!

“As the parent of a child with Down syndrome, I know from experience that doctors, nurses, and other prenatal medical professionals are badly in need of accurate information about Down syndrome so they can deliver the life-changing news to expectant parents with as much clarity—and as little bias—as possible. For many families, and for many unborn babies, access to such information is literally a matter of life and death.”  – Matthew Hennessey “First Things”

“George Will once wrote that prenatal testing for Down syndrome was a ‘search and destroy mission.’ In the real world the test is done for one simple reason: If it is positive, you can, with the blessing of our culture, conscientiously justify an abortion.  We are taught that to have an abortion is to make a neutral choice. Lettercase trumpets that.  Expectant parents don’t need a booklet from a doctor who has taken the Hippocratic oath to tell them it is just fine to get an abortion. They have been taught that already!! [They need a booklet from a doctor that says, “The child in your womb is a human being. Whatever you do – do no harm.” That, they haven’t been taught.”] – comment from “First Things”

It’s sad to think that in 2012, 90 percent of all children diagnosed with Down syndrome inside their mothers wombs were aborted.  People think they are doing the child and the world a favor by taking his/her life, but the WORLD is what truly suffers.  In today’s society, we would all agree that we seriously need a good dose of love and compassion.  Friendships without judgment based on race, wealth, status, etc.

Society (or should I call it socialism) believes that if you cannot contribute to society, you are a drain on society and don’t deserve the life God gave you.  Though a person with DS might never become a part of the fortune 500, they are graduating high school and college, working full-time jobs, getting MARRIED and rearing families, and all the while impacting the lives of everyone they come into contact with for the better.  I have yet to meet a group of individuals who are more tender and loving than those with DS!

Are there challenging days and medical battles to wade through – yes.  However, just because a child is diagnosed in utero with DS does NOT mean they are going to have the worse case scenario for the genetic disorder.  While several friends of mine have children with DS that have had to undergo open heart surgery within their first six months of life, my son was born with a perfect heart.  He didn’t have the typical intestinal problems.  He is his own person wired with his own set of ups and downs.  He is just like his siblings, and we take each day as it comes. 

I am so thankful for our Buddy Talk group and all the people we are able to reach around the state of Arkansas and even accross the US.  Our greatest passion is to bring families together to support each other and gain knowledge, to share our ups and downs and to work together to spread awareness and protect the children yet to be born with DS.

Just remember… “We are more alike than different”

Help spread the positive awareness on 3/21 and hopefully save a life by breaking the stereotype!