Wednesday, May 13, 2015

When Special is Typical

Anyone living in the world of disability cannot help but have heard about the "typical" siblings of a disabled child.  They miss out on things because of Mom or Dad hauling the Special Kid off to yet another therapy or appointment.  They are always more compassionate than other kids, because their sibling with special needs taught them to have more patience and understanding.    

Are we supposed to be more grateful for these typical siblings, and wish we had been able to give them more attention?  I think we did a pretty good job of making sure the  "Original Three" still led typical lives, despite being saddled with special needs siblings.  Besides, they even got trips to Hong Kong and Taiwan because of the adoptions.  They're pretty compassionate, but show me any family with nine kids and you'll see a lot of love from the older ones being showered down upon the littles.

Five of our nine children have Down Syndrome.  In the realm of disabilities, I think this is pretty minor.  There has never been a lot of pitying the poor siblings going on here.  Besides, the Original Three are all grown up and moving on...although I do admit the reality that some day they may choose to care for their adult siblings.

Leif is still here though, a 4 year old completely typical boy being raised with his 5 special brothers and sisters.

Leif does not know what Down Syndrome is, or what it means for his siblings.  He does know Dante has Autism, and that it makes him different and sometimes irritating.  That's life, though.

So I guess now it falls to the oldest three-- Amelia, ShanLin, and Micah to help take care of their little brothers and sister.

Leif asked his big sister to pour him some juice.  Dante indicated to Amelia that he wanted to go out into the water, and he trusted her to take him.  Micah knew that Kimberly needed some guidance so he took her by the hand on the sidewalk.

Does this technically make them "typical" siblings?

Even Kimberly wanted to give our special Dante a toy and a pat on the head when he fell asleep on the floor.

My kids look after each other in ways that amaze me every day.

These kids are role models for each other. It made perfect sense for Leif to have Amelia do the driving when he and Dante wanted to hang out in Poppy's truck.  And when Leif asked his big brother and sister to play with him,  Micah and ShanLin were more than willing to put on some costumes and play along.  They think it's pretty cool that he's nicknamed them Iceman and Firestar.  (Amelia is Batman.)

In our house, all the kids are learning compassion, and they each get their own time too.  Amelia, ShanLin, and Micah take part in Special Olympics Gymnastics and an amazing dance class, Leif and Kimberly are each in a gymnastics class, and Dante gets to go to school every day and have boatloads of attention from his wonderful teacher and aides.

In our house everyone is typical and special, even if none of the kids living here know-- or would care-- what those words mean.

Wednesday, May 6, 2015

Put On a Happy Face

I have been asked many times since Spring Break how our trip was...and almost every time all I can do is smile and say, "The weather was beautiful and the children had lots of fun."  That is the truth, but not in it's entirety.  I cannot keep telling the story of how one stupid event cost us our time with our boy, which was very painful and frustrating for all of us since seeing him was entire reason for making such a long trip.

Our second son (I'll refer to him as 2 of 9 since he doesn't always like to be named) has been in Georgia for a year, and we all miss him.  In February Jamie and I decided that we would take a road trip to visit 2 of 9.  Our first thought was to just take Dante, Leif, and Micah- leaving the girls with family, but that was not a possibility.  We went back and forth for a few weeks trying to decide if the van would make the trip (it has over 200,000 miles!), and if we would survive a 17 hour drive with 6 kids, then doing the drive all over again to get home.  There were also the logistics of finding someone to feed and care for all of our animals while we were gone.

In the end, the desire for all of us to see "2 of 9" won out and we started planning the road trip to Georgia.  We would stay at hotels on the way down, and we rented a cabin at a KOA for our 3 nights that was near our son's base.  We planned to visit a beach, do lots of talking, and visiting with old friends who drove 5 hours down from their Georgia home.

We arranged for a housesitter, packed our clothes and prayed for our van to survive!

The drive was beautiful, and blissfully uneventful.  Kimberly did not always appreciate all the hours strapped into her carseat, but in the end we were all thrilled to arrive at the campground.

We were reminded how much Dante absolutely loves to swim.  He was so mad every time we had to tell him swim time was over.  In one hotel on the way home again he screamed so loud and long about getting out that I was surprised no hotel staff came in to check on us. (Although maybe they had security cameras and saw it all? Or maybe someone had experience with Autism and knew Dante was fine?)

Unfortunately, not everything went according to plan.  Something went very wrong for 2 of 9, and we were given very little time with him.  We were supposed to be together from Monday morning through Wednesday morning, and instead we saw him for a few hours on Monday, a few minutes on Tuesday, and not at all on Wednesday.

I was torn between anger at the military system, grief for not seeing my son, grief for my kids not seeing their brother, and grief for 2 of 9 not getting to see us.  It took a lot of effort for me to put that aside and make sure the children were still having a good time, running around, swimming,  going to the little playground, and roasting marshmallows.

Honestly, I'm still a bit frustrated about the whole thing.  I know I should have just been grateful for the time we did get.  Clearly from these photos it can be seen that the children still had fun.  We did not go to the beach as planned, since we were hoping our Sailor would suddenly arrive, but a day of waiting at the campground resulted in only a 15 minute visit.  I feel cheated, and I feel that my kids got cheated, and the timing of the situation could not have been worse.  And my poor boy is still suffering the consequences of someone else's actions.  That really angers me.

I know that some day we will look back and this will have been a small blip in the big picture, but at the time, and still now, it is hard to rejoice in all circumstances.

Since Leif barely saw his big brother and we never made it to the beach (or anywhere!), I am saving tip money and hoping to fly down with him for a weekend visit in the Fall...too soon to drive again!

Next April we will likely make the trek again, Lord willing and van still working, and next time will be different, or at least the way I handle the any frustrating turns of events will be different.

In the end, it was a good trip if I look at it as a family vacation and not a pointless drive to and from Georgia.  We spent some time with good friends, spent a few hours with a son we had not seen in a year, and we learned that the children-- Dante included --can not only survive a road trip, but enjoyed all the different hotels and eating out.  The weather was beautiful, a nice change from the cold of Massachusetts, and everyone we met in our travels was pleasant and friendly.

God is good...even when I have a tantrum and ask him "WHY?"

Saturday, February 14, 2015

The Micah Experiment

Micah is adorable...and stubborn...and sweet...and frustrating...and helpful...and disobedient...and it is oh so hard to figure out what makes him tick.

What are characteristics of Down Syndrome, and what are stereotypes?  And there you have Micah.

Micah is so very smart, yet he takes hours to write his Bible verse.  He only whispers when reading, so that if a mistake is made it is not heard.  He will not even try math beyond counting.

He eats very slowly and rarely asks for seconds, yet he helps himself to any food he wants in the night.  Too many times we have awakened to a melted carton of ice cream on the table, or a peanut butter jar with a spoon still in it on the counter.

Micah might get up in the night, but he also is hard to wake up in the morning, and will routinely try to put himself in bed for a nap during the day.  We also would  find him sleeping in the girls' room every morning, instead of in his own bed.

He still "leaks" and goes through several pair of pants a day.  And his poop is yucky.  (We'll leave it at that.)

So we decided to experiment with his diet.  Starting on January 12th, we removed all flour from his diet.  This meant removing all flour from the house, since he is the Midnight Raider.  If he cannot have it, it cannot be lurking in the house.

In the last few weeks, there have been changes.  It took a while to see them, and we have not been 100% flour free, but they are becoming more noticeable as time is progressing.

Micah has been found in the wrong bedroom only once!

He is going through fewer pairs of pants daily, so his incontinence is getting better.  (I have yet to see a stool sample)

He is staying up during the day, interacting more, doing his writing faster, and is just happier and more cooperative.  The other day he sang and danced to an entire song, from memory!

Something has most certainly changed in our boy.

I hesitate to say it is all the fault of flour.  As a side effect of now flour products, there have been no processed foods in the house either.  I have not been baking so there has been a drastically decreased processed sugar consumption.  The snow and slow nights at work have effected my grocery budget, so there has been no ice cream in the almost no dairy.

What made him essentially wake up?  The lack of gluten, dairy, sugar, yeast, preservatives, or additives?  I am not really sure.  And unfortunately I did not even track his behaviors and diet daily, to look back and try to see a pattern.

So for now we will keep him, and all of us flour free.  Eventually I will add back in freshly milled whole wheat flour bread with natural yeast, since it has been some time since we had natural bread instead of processed white flour bread, and I will watch for any changes in Micah.  In a few months the goat will begin to give us milk again and we will have home made yogurt, I will watch to see if that addition of dairy changes anything.  We will hopefully figure out if there can be days of cheating with sweet treats, or if we have to be strict with his diet.

I am just glad we are trying this "Micah experiment", and very pleased with our results so far.  He is even asking for fruit to eat, instead of wanting only bread.

Wednesday, November 26, 2014

My Holiday Soap Box

7 years ago this month my Dad died.  Jamie, the kids (only 6 of them then), and I spent 5 days in a hotel, and had Thanksgiving dinner at Denny's.  I also spent several hours Thanksgiving Day visiting my Mom in the hospital.

17 months later my Mom died during Holy Week, and we spent Easter weekend at the same hotel and Easter Sunday at at the same Denny's.

3 years ago Dante had severe cellulitis in his right arm; he and I spent December 23-26 in the Hospital.

These experiences made me very grateful for eating options on a holiday, and aware of the need for community workers to work on holidays, as well as hotel staff and other things we don't think of as necessary.

Waiting tables at a Cracker Barrel, means I have to work Thanksgiving and Easter.  It really stinks to not be with family the entire day....some guests make that feeling worse, some make me thankful to be there.

When I wait on an elderly couple whose family is too far away, it is a blessing to be the one to wish them a Happy Thanksgiving.  Going out to a restaurant might be the only thing that makes their day special.

I have waited on people going to or from their own jobs that day, when preparing a meal is the last thing on their mind after the shift just finished.  And there are those traveling home from a full day with family who need a short break from all the driving and traffic.

It really burns my biscuits though to wait on large parties who simply do not feel like cooking and so they all meet up to camp out at a few tables in a restaurant.

Seriously, toss a turkey in the oven, tell everyone to bring a dish and camp out in your own living room.

And now people are shopping on Thanksgiving and making even more people required to work for our gratification??? What are we thinking???

I'd better get off my box now and finish cleaning the kitchen...we celebrated a day early since Nik and I have to work on the real Thanksgiving Day.  It was a blessing to sit at the table with 7 of my 9 kids, although we missed the two big boys.

By the way, we celebrated without our Zachary because he is in the Navy and has to work.  We will also celebrate Christmas without him (again) because he has chosen to serve our country.  Please be sure to thank those who make this choice, because it most certainly benefits you.

I am thankful for my family, and for my job.

God is good.

PS, Apparently turkey makes Dante tired...

Sunday, November 2, 2014

Will You Help?

'Tis the Season to be jolly.  Or it will be soon, once Thanksgiving has passed and Christmas season "officially" begins.

The Christmas catalogs are already arriving daily in our mailbox, and Leif is convinced that the first day it snows will mean that it is Christmas.  Right then and there with that first flake.

It is time to start considering how we will spend our money this Christmas Season.  What we will buy for our children, and for our families.

It also means that it is time for charities to raise funds, Salvation kettles will appear at the entrance to every Wal-Mart, huge boxes will appear for toy drives led by the Marines and various police departments.  Churches will have Christmas trees decorated with tags featuring the name and age of a child in need, and gifts for those children will be purchased, wrapped, and left under the tree.

Remembering those who have very little is so important.

Remembering those who have nothing is also imperative.  Quite frankly, it is commanded by God...look up James 1:27.   Deuteronomy 10:18...Job 31:16-18...Isaiah 1:17

This year I have offered to be a Christmas Angel Tree Warrior for Reece's Rainbow .  When I first emailed my interest, I was told all the kids have sponsors.  This morning I received and email that a warrior had to drop out, and would I sponsor Xander?

I was telling Jamie about my decision to raise funds for this precious orphan, and Leif hear me mention "Xander"

He said, "I have a friend named Xander!  He's my brother and  I love him!"

No, we are not even remotely able to consider adopting the Xander I am sponsoring, but I do call my oldest by Xander, short for Alexander.

Leif does have a brother Xander that he loves, and I am asking all of you to help me raise funds for this little boy to have a family, possibly even a brother of his own to say, "He's my brother and I love him!"

Please visit this website to read more about this little boy, and then visit this one, search for his photo and donate towards the cost of his adoption, so a family will be able to afford to choose him as their son.

A donation of $35 or more will get you an ornament that will help you remember to pray for Xander, and for the family that will be able adopt him because of your gift and prayers.

Right now he is in the $0-$99 raised section, but by Christmas I am hoping he will be at the top and the goal of $1000 will be realized.  

Will you help?

Monday, October 20, 2014

A Demonstration is Worth a Thousand Explanations

Often an explanation is enough to teach a person how to do something new.  I can read a recipe and follow it successfully, and illustrations with the directions are usually enough to put together a new purchase.

My triplets do not learn by explanation, they learn by example.  Auditory processing plays a role in this, due in large part to having Down Syndrome, and they really have a hard time visualizing what I am saying.

A demonstration is worth a thousand explanations, though.

When they saw me sit down to play with play dough, it was not long before they were also exploring what they could make. Having difficulty understanding a verbal or written explanation does not mean the cannot learn things.  In fact, given the proper instruction and opportunity for hands on learning and repetition, they learn quite quickly.
  Amelia told me she was making some train tracks.

ShanLin does not talk, but she was quite focused on her project.  Those little balls of dough certainly had her fine motor skills being improved.

 Micah was able to balance a triangle, and give me an adorable smile.

Kimberly was really working on her hand/eye coordination, helping Micah with his projects.

She even tried to take over Micah's projects.

Leif has taken the lead with their time outdoors, getting Amelia to climb trees with him, and Kimberly to climb up the play set.  She can be a bit playful herself, trapping Leif on the ladder.

While we do handwriting and reading, textbooks do not play much of a role in our home school days.

Instead of time spent explaining, we spend a lot of time doing, a lot of time learning....

And lots of time having fun.

God is good, always.

Monday, October 6, 2014

The World Keeps Turning.

We finished our first month of schooling...and we are looking forward to working our way through month 2.

Kimberly has turned 3 and therefore has stopped all of her therapies.

Dante is fully enrolled in a special needs classroom and loves it.

Sunny has turned 13.

Today is Amelia's 11th Adoption Anniversary.

Nikita bought a puppy that is just adorable and sure to keep her busy.

And the world keeps turning.

I am so thankful for our life, our home, our amazing children.  Alexander in college, Zachary in the Navy, Nikita contemplating her future, the triplets doing so well at home, Dante in school, Leif rocking our world daily, and Kimberly making sure our world revolves around her.

God is good.