Same vs Different

In many ways, Matthew is just a little kid-- he runs around, sleeps in his big boy bed, eats just like the big kids, plays pretend, and so on.  But in other ways, he is a bit different (beyond his physical differences).  He communicates a bit different, he develops a bit different, and he seems to learn just a bit different too. 

So, my biggest dilemma right now is-- what do we do about potty training?  Do we treat him just like a little kid-- doing it up big in a day like we did with Alyssa and Jackson or do we treat him as if he's a little different and do something different than we've done in the past?  I wish I had a crystal ball that told me the right course of action--which path leads to the best outcome. 

Also in question-- when is the right time for Matthew?  Alyssa was 2 and a half.  Jackson was a little over 3.  I thought that 3 was the perfect age, as Jackson was easy to train and had very few accidents.  With Matthew, I question the timing because his developmental age does not match his chronological age (asynchronous development).  And even his developmental age has great variation-- for example, socially he's around 3, gross motor is probably around 2 and 1/2, fine motor about 2, but verbally he'd be lucky to be called a year and a half! 

What to do? What to do? 

Does It Make a Difference?

Matthew has been in therapy since he was 4 weeks old.  Occupational, Physical, or Speech-- or all 3-- for 3 years+.  I've always wondered how much of a difference it actually makes for him, as his biggest developmental jumps seem to not revolve around therapy but some mysterious switch. 

With the move and summer adventure, Matthew has been without therapy for 6 weeks.  During those 6 weeks, he has had the biggest jump in verbal ability-- ever! 

Again, it makes me question the effectiveness of therapy for him but we can't take the risk of not going to therapy.  So, I have found a private OT in Austin that we will start next week, and we are on a waiting list for a private Speech therapist as well.  We also await the start of the school year in just 4 weeks where Matthew will be in an early learning environment 5 days a week, concentrating on his developmental needs for 4 hours a day. 

Hopefully the switch has been flipped and therapy will just improve the leap. 

Normal vs Special

As I read about medical researchers 'turning off' an extra chromosome, I had mixed emotions.  On one hand, how wonderful would it be if the genes on that extra part of Matthew's 4th chromosome were made inconsequential!?! But on the other, that extra genetic material is part of Matthew.  I wouldn't want to take away part of Matthew that makes him so wonderfully Matthew. 

This dilemma reminded me of a Ted video that a dear friend sent me that raises a great question for parents of unique kids--do we try to make his life as 'normal' as possible or do we go the other way and celebrate his 'uniqueness'?  As Matthew's mom, I struggle with the desire to do both.

I saw a sign in a store that read "Why try so hard to fit in when you were born to stand out?".  Ironic, isn't it, that I want Matthew (heck, all of my kids) to fit in but yet I want them to be unique and special too.  I'm unsure if you can do both. 

For Matthew, he is unique.  With his 8 beautiful fingers, his cute misshapen ears, and his bright but downturned smile, he will always stand out.   I want to celebrate him as the perfectly unique being God made him, but I also don't want him to suffer for it, which I fear will be inevitable. I want him to have a normal life, but be special too. 

 

For a much more eloquent perspective about 'turning off' down syndrome, read this post from a mom whose daughter has downs syndrome.

Why Matthew Cries

There is a tumblr site called "Reasons My Son Is Crying".  It made the news, as one dad was documenting the reasons why his sons were crying, and it morphed into this site.  I think about it often when Matthew is crying about stuff that I just don't understand.  So-- here are the reasons that Matthew cried for the 12 hours he was awake.

I closed the garage door.
He had a spat with Jackson about the Strolling Bowling game. (See the awesome retro commercial)
I wouldn't let him sit in the '66 Mustang (which was on the street at the time).
Again, I wouldn't let him sit in the '66 Mustang (which was on the street at the time).
I shut the front door.
I wiped his face.
He was told he couldn't have more goldfish.
It was naptime. (This happens every day and drives Darren nuts.)
He was told it wasn't okay to pound on the computer keyboard.
I put the shoe bins out of reach.
He was told he couldn't stand on the kitchen chair to destroy the Lego Death Star.
It was bedtime. (Again, happens every day to Darren's dismay.)

This was Matthew crying during time-out during our trip to the lake.
It is rare we can capture Matthew crying in pictures,
because like Pavlov's dogs, he usually smiles as soon as a camera comes out.

Jackson's Birthday Experience- Bats!

We celebrated Jackson's birthday the Saturday after his birthday with grandparents from both sides and Uncle Bryan and soon-to-be Aunt Brandi.  It was a nice gathering and the first time we've hosted guests in the new house!

For Jackson's birthday experience, we went to see the bats.  This is a very Austin experience, as Austin has the largest urban bat colony in North America and every night when in residence (about March through early Fall) they head out to forge for dinner en mass. It is quite a sight to see! 

The facts.

Jackson was a huge hit with his bat wings (that we picked up at the Indy Zoo).

He really enjoyed the fan/spray bottle I bought to keep us cool.
Surprisingly enough, we really didn't need them as it was pleasant outside-
especially for the middle of July!

We had a picnic as we waited for the bats to emerge.

My point and shoot camera wasn't the best choice to photograph the bats,
but all of the little black spots are bats. 
They emerged in waves. Just amazing!

Interesting Medical Developments

I used to follow health/medical news with a passing interest until Matthew was born.  Since then, I follow it religiously.  I don't exactly know what I expect to find that relates to Matthew's one of a kind chromosome duplication, but I keep watching, reading, and listening-- just in case.  Maybe something develops in the medical community that will keep his heart healthy, his kidney perfect, or keep him from developing more adhesions in his belly.  While I await that type of news, there have been 2 recent, very interesting medical developments that may relate to Matthew.

1. Medical researchers were able to 3-D print an ear, that works and grows!  Matthew has microtia of his right ear (meaning it is little). We wouldn't consider surgery for it, as it is extensive right now.  But this 3-D printed ear gives possible hope for kids with microtia.  You can read about it here. 

2.  In a lab, medical researchers have been able to 'turn off' the extra chromosome that causes the symptoms of Down Syndrome.  Wow.  I can't even image what this would mean for all of the kids with trisomies (3 copies of chromosomes), like Matthew (who has partial trisomy of chromosome 4). You can read about it here.  

What interesting developments! 

A Week At Home- Together!

The kids and I have been home a little over a week after our great summer road trip. This is the first time that the 5 of us have spent 7 days/7 nights at our home since late January! 

I spent most of last week unpacking, so this week is really the first week we feel like we live in the house.  The house is now totally habitable.  Everything is unpacked, save 1 box of dvds and pictures to be hung on the walls.  It looks like we live here! 

After the last 6 months of transition, we are adjusting to our 'normal' life again.  Happiness is!

View from my favorite room in the house.
All unpacked.

The Unknown

When Matthew was first diagnosed when he was weeks old, I think the unknown is what I feared the most.  Would he smile? Would he sit by himself?  Would he walk?  Would he talk? Would he be able to feed himself? Would he be able to care for himself?  Would he be able to drive?  Would he be able to hold a job?  Would we be 65 years old with a totally dependent 30 year old?  In the last 3+ years, many of the unknowns have made themselves beautifully known, though some still remain. 

In the last few months, I am less and less fearful of Matthew being a totally dependent adult. 

The day he was released from the hospital in April, Mattie brought me a bag of goldfish to open--meaning:  he knew he was hungry, opened the pantry, decided what he wanted to eat, pulled the goldfish from the shelf, attempted to open himself (as indicated by the teeth marks on the bag), figured out he couldn't, determined that mom would help, found me, and handed me the bag to open.  Sounds simple enough, but it is something I worried Matthew might not be able to do.  I love being proven wrong by Mattie!

The other day I heard water running in the bathroom.  I found Matthew on a stool brushing his teeth-- meaning:  he decided he wanted to brush his teeth, pulled the step stool into the bathroom, got his toothbrush from his drawer, and turned on the water.  Again, sounds simple, but I love watching him be so self sufficient!

There will no doubt be many challenges for our sweet Matthew in the future, but I am so very thankful for the beautiful resolutions to the unknowns to this point. 

Matthew Post Op 3 Month Update

In very Matthew fashion, when Matthew recovers, he is full steam ahead! 

Many times on the trip, I marveled that Matthew was 2 months post-op and we were traveling the US.  The only special provision was a map of children's hospitals along the route, just in case, that thankfully we didn't need.

I was so worried days after the surgery, but when Matthew turned the corner, his recovery was nothing short of amazing. 

3 months post-op and you'd never know what he'd endured, save the wicked belly scar.  Thanks be to God!

Big Boy Bed

Alyssa and Jackson were moved to toddler beds from their cribs when they starting climbing out of the crib.  We kept waiting for that sign from Matthew that it was time to move him from the crib, but he was perfectly content to stay within the confines of those 4 slated walls. 

So, we decided we'd make the leap when we moved but then the movers reassembled the crib.  It was just easier to keep him in it for those 10 days before the trip. 

Then, we went on our road trip with only his toddler cot.  He fell out of it a few times, but overall did great in the cot (and in the bed with me sometimes).  So, Darren disassembled the crib while we were gone and since arriving home, Matthew has transitioned fully to the big boy bed.  So far, 4 nights and 3 naps into the transition, and Matthew is doing great!  

The last bastions of babyhood are leaving the Hoy House-- no stroller on the summer road trip, no pack n play, no crib.  Diapers are next! 

Napping in his big boy bed.

Summer Adventure- Destination #5

Destination #5- Chicago, IL (quick visit with family)

The kids sitting on Uncle Bill's motocycle.

The squirrel eating the peanut Jackson thew him.

Summer Adventure- Destination #4

Destination #4- Pure, MI (to see family and play in the lake)  What's not to love about the lake?

Eating.

Seeing family.

Learning to fish.

Fishing.

Playing in the water.

Taking the 'ice cream' boat to get ice cream--every day.

Hanging out with the dog.

Jumping off the dock.

Everybody jumping off the dock.

Playing with cousins.

Going to the sandbar.

Being loved on by Aunts and Uncles.



Love Pure, MI.
Thank you to Uncle Gary and Aunt Peggy for hosting us yet again!

Summer Adventure- Destination #3

Destination #3- Cape Cod, MA (to see our dear family friends and play in the ocean)

 

 

 

Thank you to the Randolphs for hosting us.
Counting down until we see you again!

Summer Adventure- Destination #2

Destination #2- Washington, DC (to see Aunt Karen and go to the Lincoln Memorial)

Washington Monument under referbishment because of the damage sustained in the earthquake.

Look kids, the White House.

Picking flowers in front of the Washington Monument.

Jackson and Matthew walking through the WW2 Memorial.

 

The kids did great with all the walking.
Yipee for not having to take a stroller!

Jackson pawing the Kermit the Frog case at the Smithsonian.

Matthew walked all the stairs up to the Lincoln Memorial.

I got to share my favorite place in the world with 3 of my favorite people in the world.

Summer Adventure- Destination #1

Destination #1- Indianapolis, IN (to see Aunt Debra and go to the zoo)

Summer Adventure

Last year, when I envisioned taking this year's summer road trip, 3 kids and 4700 miles, I knew it sounded a little nutty. After Darren took a new job with less vacation time, it seemed even crazier, as I would be doing it solo.  And finally, as the trip got closer, it seemed like I had lost my mind, as Matthew would often freak out on the short ride to the grocery store.  But Alyssa, Jackson, Matthew and I went on our summer road trip adventure anyway.

It was amazing!  The kids were great. 

Driving, we had a few rocky moments here and there, but overall, they were often better behaved in the car than they were out of it.  They powered through too, going 4 or 5 hours between breaks.  And they did it without the aid of dvds, as they often get carsick with them.  We listened to audiobooks.  They colored.  They napped.  They played with their bag of toys.  They enjoyed seeing the US through their window.  82 driving hours over 22 days. 

On the other end of the drive, there were people we love and fun to be had!  (More posts to follow.)

I would definitely do it again!

At one of our many stops.

 

Happy 6th Birthday, Jackson!

Happy 6th birthday to our Jack-Jack!  He's a fun-loving kid that gives big hugs and laughs from his toes.  

Jackson loves
-corn dogs
-Star Wars
-playing Wii
-Phineas and Ferb
-his family
-sleeping on the top bunk.