Halloween catch up

Not sure if JBF - just between friends - sale is national but man I love that sale!!  Sell old items, barter for an early shopping pass and buy amazing items!!

Besides getting lots of school uniforms for our kiddos attending the Mandarin immersion school - I found all of these except Fei's (well she got a beautiful snow white costume but that didn't meet the theme.)

Heehee Dawson's English teacher pulled me aside a few days before Halloween as he told her we made him a potato LOL!

And Morgan went with all of her friends - who were all princess's.  I just couldn't see spending tons of money and time making a ball gown she would wear once so this was our compromise - Belle before!

Halloween was a crazy day - as our family has gotten bigger, I have had to change how I do things.  

I have backed down to being room mom for only one class. 

 I was super excited to help out my friend whose daughter is in the am class because they were IN CHINA getting their son!!  So two parties for preschool meant missing the harvest fest at the mandarin school but we sent "pumpkin" cups made from butterscotch pudding and green airheads for stems (apparently I didn't get an pics LOL!)

 Tao and Cav's class got mummies made from squeezey apple sauce and were super cute 

We also changed up how we did Halloween - I know horrors.  Our oldest had a football game at 7 pm (2 hours away)  In addition, because we have so many food and begging issues with Cav and Fei we thought having them go to doors beg for food and get candy was … well. . . insane.

So I got them pizza, made them each up a treat basket with candy, bracelets, pencils etc and they got a NEW movie.  Plus kettle corn because our Chinese kids especially LOVE popcorn LOL!

It was a crazy hard decision but ultimately they loved it, we got to go to the game and watch our oldest, and Brahm got to be ball boy for the varsity game!

Tak is #53!

Standing up for Brahm

When you have a child born with a special need, there is a period of loss, and so many tears.  Tears over regret, the loss of dreams, but mostly, tears as you watch similar aged children progress past your own.

What you know is that your child's path will be harder.

I guess this is why they now call them Challenged. (which BTW I have such a hard time still even uttering the words challenged, disabled, or special needs with any of our kids.)

But your child learns to finally walk, to talk, to meet all those goals.  And somewhere in the midst you fall in love with the things that make your child unique.

For Brahm, the deepest ache I felt was when we realized his heart for sports, pairing that with a body that would let him down and I remember crying out the Lord WHY!  How unfair.

We also made a conscious decision to give him every opportunity to play for as long as his body would last.

What I didn't know is that I would have to fight for this right.

If you have followed then you know Brahm is a phenomenal little wrestler.  We loved the sport because he could compete against others that were close to his size and weight.  For a child who only gains 2-3 lbs a year we knew his time wrestling would be limited.

What we didn't know is his hopes would be dashed THIS year at the age of 7!

You see our little guy weighs 34-35 lbs but because of his birthdate - he is supposed to wrestle in the 8U division.  The biggest problem is that their lowest weigh division is 45 lbs.  That's almost a 50% increase in weight.  It's ludicrous.

Even worse is that he has been allowed to wrestle in the 6U - 37 lb division all year.  He does win - not because of any other reason than he his good.  His understanding far outweighs his age.  He started wrestling last year and won 4th in state.

Then just days ago, before he was supposed to wrestle state THIS year - we were notified he HAD to wrestle in the higher weight division.

And the tears started flowing again.  You see his Dr's were ok with him wrestling in an appropriate weight class but they warned us an accident, and forceful trauma to one of his little joints could become catastrophic.  My husband and I knew there was absolutely no way he could wrestle in the 45lb weight division.

So I cried, I wanted to hide in my room, and cry even more for how unfair life was for our fierce little guy.

And then I posted - on FB - and was encouraged and then I knew it was my responsibility to fight for my him.  My responsibility to try my very best, to research this issue to help our son attain his dream.

SOOOO, I have emailed, & I have called each time specifically stating our request for a "reasonable accommodation" (this is the terminology for ADA.)

I have a clear paper trail - Hoping, praying that someone will find some bureaucratic common sense and do whats right for our son.  We are at the very top organization for wrestling within the US.  I almost laughed when I found their address - in our town.  But it also made me sad, as their offices are located just miles from the US paralympic training grounds.  Of all the cities in the US to discriminate against our boy.

My Aunt said it the best " All children need to learn how to win and to lose, but they need to be given the chance to try."

So as time ticks down to Saturday morning please pray with us for strength and that they find an appropriate compromise.  I really don't want to file an ADA or Civil Rights complaint but am prepared to so, so that another child does not have to go through this.

State - 2013

The test of the morality of a society is what it does for its children. 
~Dietrich Bonhoeffer

2/2014

"A nation's greatness is measured by how it treats its weakest members." ~ Mahatma Ghandi

Emerging

My new favorite saying is "The days are long but the years are short." 

I think all mom's have a special place in their heart for their oldest.  THe baby who changed the dynamics of the household from a couple - two individuals living a life together but fully capable of caring of themselves ~ to a family.  When a tiny little baby enters the picture- in our case fulfilling a dream we were unsure would happen - helpless, needy, and in so many cases forgiving of so many mistakes.

AS I look at the young man who turns 15 today, I can hardly figure out in my mind how this tiny baby born with so many possible complications is now taller than I.

Despite his size, it is heart, his gentle spirit that we are most proud of.  This boy of ours who had not walked into a church until 3rd grade now hears God calling him and my humanness realizes I must step aside.

I can honestly say that the changes we have seen in our boy over the last three years have been amazing.  Our journey through adoption and his two trips to China has opened up his eyes, it has shrunk the world, and dare I say lit a fire in his adventurous spirit.  It is so fitting that our oldest shares his birthdate with our official adoption date for Tao.

I know there will be many more nights of worry ahead, but also feel an excitement for what the future holds.  I know that there will be bumps along the way, and desperately pray for smooth sailing.  But already the man we see emerging astonishes us everyday.

The boy who hates pictures, I absolutely love this from his big hands to his adoring look

Blessed

What a Blessed day we spent yesterday.

It was Tao's first Halloween and that boy is a rockstar.  None of the fear, or overstimulation we experienced with Cav (He did well also which was the truest blessing.)  His little personality shined as he commented and talked with each new homeowner.  I have to believe my little fisher of men renewed people's spirits and brought them joy.  He is also the biggest class disrupter but how blessed we were that our teachers love him and encourage his presence.

I finally broke out the sewing machine after 3 years and made them all outfits

Made minion marshmellow pops for 3 classes (Cav's class only did healthy belch heehee)
These were super easy and when I had to race home was quickly able to make 5 more!

THe preschool party was an easy success and all the littles had fun!

Cav's party was earlier than last year so i got to just be a mom in his class!

Our little class disrupter

Brahm's cute teacher loving our baby! (and yes I lost my mind and let them purchase a fart gun!)

I still haven't figured out the big family thing completely.  With 3 ~ I always made the special snacks, was room mom and made outfits.  Reason would stand that with twice as many I could do half as much but truly God has blessed me in still being able to provide my momma's desires with joy and not feel overwhelmed or stressed.

Halloween is always a bit different for our house - mainly because we live in a community that has all 5 acre plots of land.  There is an official don't come to our doors rule for our community.  Luckily, every year we are Blessed by friends who recognize this and invite us over - THis year our bigs went on their own with friends - which was bittersweet to say the least.

It was fun though to be at our friends home and open the door to squeals from the children, the laughter and sense of community as the streets were filled with children and even the community firetruck came by.

Today in bible study a friend uttered such profound words.

May we always knock on God's door with the eagerness of a child and utter anticipation everything He gives to us is good.

Dwarfism Awareness ~ Little Football

When Brahm was a toddler I distinctly remember crying about how unfair it is that God gave our poor disabled boy a heart for sports (yeah we have come a long way.)

Now it's more of a matter of finding sports he can play without further damaging his joints.

Some children with dwarfism can play almost any sport

Some children with dwarfism are very limited on the types of sports they can play (most specifically those who had the neck surgery Fei did and those that have spinal issues.)

And then we have Brahm who suffers from joint pain

and because the round ends of bones are jagged 

we have to protect his joints. 

A break especially near the epiphysis could be detrimental.

So we find sports,

weigh his heart, mind and body

and give him a chance to try.

Mind you at 7 he only weighs 33 lbs LOL!

Anyhow, flag football was our newest try

AND he loved it!!

He actually did great on defense ~ mainly because his mind was so amazing and he gets the game

and we had to laugh at him trying to block etc.

And our Tao - well he is another sport kid.

One of my all time favorite pics - he is trying to get Fei to hold the ball

think Chuck and Lucy from the peanuts LOL!

Dwarfism Awareness - sports

Dwarfism became an approved "disability" in paralympics 30 years ago

Since then many little people have participated in more and more sports including the World dwarf games held every 4 years and

DAAA games held every year during nationals

For their size our littles are extremely athletic.

In fact, Brahm is our sport kid.  This was a struggle we had to endure coming to the point of yelling at God about how fair and unfair life is.

Brahm has more heart and soul than I could ever have.

Dwarfism Awareness ~ walking

Because children with dwarfism have larger heads and torso's and shorter arms and legs

They ARE very late walkers.

In fact, it can be completely normal for a child with dwarfism to not walk until they are 2 or 3.

Brahm was 1 1/2

Tao was 2 

and Fei was over 2 but we are not sure.

Once they walk they are good to go and many of the development questions (especially with adoption) fly out the proverbial window.

Dwarfism awareness - {hypotonia}

Most children with dwarfism have hypotonia or low muscle tone.  

Although Brahm looks like he is less than 6 months here is is over a year.

He had almost no core strength

I thought he was a great baby - I would set him anywhere and he would stay there

I was wrong and he was unable to get out of the sitting position.

Dwarfism Awareness - parents

It is estimates that 80% of children with dwarfism are born to parents of average height (AH).

we don't say normal height, tall, AH is the correct terminology.

This is Brahm

Daddy is 6'3" 

(and wears a size 15-16 shoe)

Field Day triumphs and woes!

THere are some days I jsut want to hide in my bedroom and cry.

Today was Field Day - I HATE field day.  My kids can't do stuff, they can't, they can't, they can't.

BUT I NEVER EVER, EVER let on to them.

I dread the day in silence, plan on attending the event to try an put out fires before they begin and be prepared to have a special treat at home for them.

WHen we only had a Brahm it was easy - I spent my entire day following his group around, anticipating and making the playing field as fair and accessible as possible LOL.

With 4 littles it's jsut NOT possible.  I get a much needed work out running from group to group but still I have learned I have to depend on my teachers to anticipate and care enough to accomodate my kids on the fly.

And you know it was great for 3 of them.  Ok Tao didn't really have field day as he goes in the morning.  BUT Brahm's class loves him, as does his young, future loving teacher.  So he joined them LOL!

Brahm ran and for the most part stayed up with his group in ALL events!!  THIS was the first year he could do that!!  We cheered, and were beyond excited for him.  Previous years (as we are jsut about a month into school),  Field day became the demarcation line where we could see his status in class go from cool little guy to something is wrong with that kid.

It has been beyond heartbreaking to watch.  BUT I think we are past that with him, and my heart sings!!  We were blessed with a gloriously warm day which helped his joints.  WOnderful kids who would match up with him at stations.  Apparently he did get drug in the 3 legged race, but at 32 lbs - well it's not hard to do.

Fei - well she was Fei with her radiant smile!  My favorite were the hurdles.  Apparently, she ran up to them, looked at them and then crawled under them!! LOVE

So our littles did incredible.  I am so relieved and excited that they had fun, had fun with their friends and are still as awesome before this day!!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

And then there is Cavanaugh - this may make people mad, but we only accomodate our kids some (ie I went to find the hand trike because I knew he couldn't do the bike race).  But most of the activities we ask them to try.  That's it, step up, do your best and be respectful of the people volunteering their time.  You don't have to be the best, you don't even have to finish but you must try.  (I am talking frisbee toss, ball throw etc.)

(THis is the 3rd year Cav has participated in one capacity or another so it was not new.  He has been slowly spiraling downhill as the predicted honeymoon is slowly waining.)

Cav decided he was not going to do any of it, and was defiant and nasty to his teacher and helpers.  So much so that they called me.  Luckily, I was on my way and we had a little come to Jesus meeting of how he is expected to act ~ period.  Both my husband and I are of the premises that teachers are not paid enough for the crap they endure.  I have to admit I am horrified that it is my son causing so many issues ugh

Cav loves to act more disabled than he is, and his teachers well, they have great hearts but totally enable the "poor disabled boy".  By the time I got to the school from my bible study at 11:30 he had eaten everyone's food from the wagon, gone to the bathroom twice, went to see the nurse and totally disrupted the entire classes time.  The hard thing with manipulative kids is that you can't pinpoint what is going on but you are totally and utterly exhausted and frazzled.

Giving him the benefit of the doubt I let him apologize to his teacher and rejoin his group.

THis lasted for a bit but then all hell broke lose.

Let's jsut say we left the school early with him screaming at the top of his lungs.

The sad part is that people only see Cav for his legs.  Not the child behind them.  If he had been born with legs I can guarantee he would never be allowed to act like he does.  It is such a disservice for his future.

My heart also breaks because those around us that saw me carrying my screaming leg flailing 5 year old out of the school will go back to their preconceived notion ~ that's why those orphanage kids shouldn't be adopted.  And THAT breaks my heart.

World Dwarf Games part 3 - football

When you have a little you expect a life of step stools, teaching self advocacy, answering questions.

But as with any special need there is a sense of loss sometimes.

I say loss but truly it is that pain in your mommy heart.

For us - it is football.  Brahm LoVES football.  I mean eat, sleeps and breathes it.  He loves the mental part of it.  His big brother plays.   For children with dwarfism they can NOT play tackle football.  Their necks and heads - well football can lead to paralysis.

SO when we saw they were offering a flag football clinic we knew that was a MUST.

And it was everything we expected.!

We were the first ones to the field Brahm was so excited.  But in no time at all it was a pick up game of flag football - just like anywhere else in the USA - except the participants were equivilant in size.

They are jsut as fierce, there are some incredible athletes, there are NO excuses.

It is surprising how one pick up game can heal a mother's heart.  

We realized despite our best attempts 

WE HAD BEEN MAKING and allowing EXCUSES for Brahm.  

We were  afraid since Brahm has a different type of dwarfism he would tower over the other kids

We were "thrilled*" to see he was similar in size.

In fact, we saw so many different looks to dwarfism.

* When Brahm was a baby he was to perfect, to tall the LP community constantly told us.  We felt stuck between two worlds.  So when I say thrilled we were glad that Brahm fit into this community.

1st day of school

Ha!  people ask us all the time if we homeschool and frankly I commend those that do but my children hardly listen to me when it comes to brushing their teeth.  Also our littles REALLY need to be out in the world as much as possible we believe.  Advocacy for them will perhaps be the greatest tool we can teach them.  Brahm not so much - but Fei will be little as in her adult height will be similar to her current peers (1st graders).

We are so blessed by our school - and most importantly we are blessed by our teachers - they LOVE our kids.

So although it is a whole new year, we have all the SAME teachers except Brahm.  Everyone else moved up into last years teachers.

For littles this has been amazing, I didn't have to coach the 1st grade teacher about Fei's needs, she had Brahm last year.

The kindergarten teacher knows we don't treat our children as disabled - we expect them to do the same as their peers to the best of their ability.

It was amazingly an easy morning, especially since the 1st grade teacher took me aside and warned me the bathroom locks hadn't been changed (fei can't reach them to close the door.)

So we have a freshman, a 6th grader, then 2nd, 1st, kindy and preschool (who starts next week but didn't want to be left out!!)

Tao starts next week but we didn't want to leave him out!

Gorgeous girl ready for 1st grade!

Handsome 2nd grader!!

Cav had issues this morning about taking pics, and it was past time to leave

But I was able to snag a phone one from class!