Discerning Silence

I've been working this blog post out in my mind for a very long time.  I've been thinking on it, stewing on it, mulling it over.  Here's the thing....  non verbal really, really stinks.  To me, it stinks way more than CP.  It is hard to parent a child coming from a background of neglect and trauma.  It is even harder when that child is not communicating with you.  When, for a myriad of reasons, this child is not using verbal language.  Seth is full of hurt.  As is any child who has been abandoned, orphaned and left to institutional care.  He is well aware of what he's missed out on.  Seth knows "lonely". 

Over and over, I have thought "How am I supposed to help this little boy heal when I don't even know what's going on inside him?".  And see, this is where I realize that Heavenly Father knew we needed Seth.  I have six biological children.  I have enough parenting experience, that I was fairly confident I could be an instrument in working a child towards healing.  I was, perhaps, a bit overconfident.  But God wanted me to stretch.  He wanted me to grow.  He wanted me to learn how to listen.  To really, really listen.  So in His wisdom, he gave me a child that I had to REALLY work to listen to.  He gave us Seth.

Seth is unique.  Seth's speech issues do not stem from his CP.  He does not have a motor planning issue.  He does not have apraxia or dysarthria.  Seth doesn't talk because of a number of issue.  The biggest two being neglect and trauma.  Seth doesn't talk because he wasn't talked to.  Seth was largely isolated, raised in a quiet baby house, with limited social exposure.  Caregivers were quick to give physical care.  He was fed and clothed efficiently.  He did not know abuse.  But he also didn't know warmth or love or friendships or play.  Seth wasn't talking when he came home because he lacked the social communication framework to get there.  Long before toddlers start to talk, mothers are working on skills.  Making funny faces, playing "This Little Piggy", playing Peek a Boo, reading books, playing with toys.  When a child lays in a playpen alone, year after lonely year, the results are devastating. 

Seth has made huge progress in communication.  Seth's now using the PEC's system very skillfully.  He indicates his choices, his wants, his needs, with a series of pictures.  When he hands me the picture card, he is, in essence, saying "I want _______ (insert card)".  He has learned that communication is worthwhile.  He has learned that communication is power.  When he communicates, we listen and do our best to help him.  That is the motivating factor to communication.

From there, we continue to slowly build to verbal speech.  The key word being "slowly", because the ball is in Seth's court.  He has the power.  He has a few words in his repertoire.  If he chooses to use them.  Sometimes (most times), he'd rather be silent.   There is a part of Seth that wants to be his own island.  For a child who spent his life so physically dependent, he is fiercely, stubbornly emotionally independent.  I think because that's what he had control of.  Seth wants to rely on Seth.  Because Seth has never let Seth down.  He trusts Seth.  Seth is multi faceted.  Complex.  He is wise beyond his years.  He is so stinking vulnerable.  Communication takes trust.  He has hurt I can't even wrap my brain around.  But I can wrap my arms around it.  And we do.  We wrap our arms around Seth's hurt all day long.  We recognize it.  We embrace it.  We own it.  It is a major factor to what drives Seth.  Seth's biggest need is to feel safe.  For him to know that he is ours forever.  We are providing him a safe place to heal.  But he will choose how fast that healing happens.  Because that's his right.  For all he's been through, that is his right. 

Seth's most consistent word is Mama.  We've heard him say about 30 words.  Most days, he says 3-5 words.  We have no doubt that Seth will talk.  For Seth, verbal is vulnerable.  Connection is vulnerable.  Trust is vulnerable.  Non verbal is comfortable.  Non verbal is, in his mind, where he can hang out in our family, on his terms.  He can choose when to connect, how often to connect, and when to disconnect.  So we continue to create a need for communication, to bring him gently to our side, to build trust, to celebrate his successes, his steps toward us, his willingness to need us.  And we wait, sometimes not so patiently, for Seth's voice to be heard. 



In other awesome news.....  Frank has a family!!!  My sweet Frank, who Jeremy and I met while we were adopting Seth, is turning 13 this month.  Happy birthday to Frank.  This year, he gets a family!

And not just any family, but a totally awesome, completely rocking family.  I am so excited to watch them travel to him, to meet him, to love him, to bring him home.  Any child who has to wait 13 long years for a family deserves the very best, and the Bakers are absolutely the very best.  The Bakers are not new to the world of adoption.  They have adopted multiple times, bringing six children home from China and from Ghana. 

If you feel inclined, you can donate to their adoption fund through this link.  They are also bringing home Emmitt, another boy who has been in an institution for far too long.  Please support this beautiful family on their journey to bring these boys home. 

http://reecesrainbow.org/?s=baker

And lastly, as always, my mind wanders to the boys and men we love.  Those still living at Seth's institution. 

It's Mother's Day, and they've been on my mind all day.  The mother-less.  Those who are without love, without family, who are existing, day to day, in a steady stream of hopelessness.  

I asked Helping Hands USA what the institution need right now.  Today.  They replied "Diapers.  Always diapers."   Helping Hands USA has recently lost their biggest donor and is struggling mightily to supplement the needs of the institution.  Last year, we worked to fund raise for fans and CD players and new wheelchairs.  This year, Helping Hands USA is struggling just to keep up with the demand for diapers.  Such a basic need. 

He commented that with the heat coming, the smell becomes overwhelming if diapers are not supplied.  Oh my heart.  It hurts to think of any human living in those conditions.  And so I ask you, can you help?  Jeremy and I are committed to helping the institution, the boys and men, every month.  It's in our monthly budget.  Can you commit to the same?  Even a small amount, every month?  If not, can you commit to help them today?  This month?  Can you give a little to boys who have so very little?  Can you show them a little bit of a mother's love?  A mother's kindness and compassion?  If so, here is the link that will take you to Helping Hands USA's website.  It is a tax deductible donation. Thank you! 

http://givethemjoy.org/Donations.html

Bursts and Set Backs

Progress for Seth continues to be steady, continual and with occasional huge bursts.  This past week, we had a burst. 

 

Two weeks ago, I asked Seth's PT to let him try canes.  To be honest, we were both a bit doubtful that Seth could actually pull it off.  He has very high tone and does not have the best balance, but he's surprised us before.  I was curious what he'd do, if he'd be able to figure out how it works.  I told her if we never try, we'll never know for sure.  He surprised us yet again. 

 

 

This was week one, so she held the sticks and moved them.  He just had to shift his weight bearing to his legs and learn to push down on the sticks in order to lift his legs.  Two weeks ago, we were both pretty sure this wouldn't work.  This week, we started talking about canes and then getting him to independent walking.  Hard to believe that a year ago, he had only barely started walking in a Kaye walker and still needed a wedge on his AFO's because his feet pointed downward from years of neglect.

 

The director of the baby house told me that Seth really wanted to walk, that he'd sit in his stroller and watch other kids run around.  He was frustrated that he couldn't walk.  He'd try walking on his pointy little feet.  But without the proper equipment and therapy, they had no way to teach him.  Seth has spent his whole life being a spectator.  He stopped being a spectator when he learned to walk in his walker.  He's learned he has access to his world, that he has freedom to go wherever he wants, that he is a participant.  And now, he's moving even further into that independence.

 

Did you see that look of pride in his face?  I love that!

 

In all honesty, Seth's mobility will probably always be a mix.  He'll use a wheelchair and a walker, and hopefully in some cases, he'll be an independent walker.  Depending on terrain, distance and his own preference, Seth will have some options.  I've learned that's very common with kids with CP.  We are thankful for options.  We are thankful Seth has choices.

 

Seth loves to climb stairs.  He likes climbing them a lot more than going back down. 

 

He has solid AFO's, which means he has no give at his ankles. There's no hinge to make it easier to flex. Try going downstairs sometime (or up, for that matter) without bending your ankle.  It'll give you appreciation for kids with CP and what they do every day to accomplish the things we accomplish without even thinking about it. 

 

When he got his new AFO's two months ago, hinged AFO's were completely off the table, because they were afraid he wasn't strong enough and would crouch. Now, he's walking enough and doing steps enough that a hinged AFO or Leafsprings are really pretty necessary.  I'm thankful for his increased strength, endurance and skills that make his progress possible. 

 

This last video was shot in the parking garage at our home away from home, Shriners Hospital.  This was after therapy and he was already tired, but I was dying to get video of him showing off his other new skill.  This past week, Seth has begun to use his walker with the swivel wheels, which means he doesn't have to just go straight anymore.  He doesn't have to rely on us to turn his walker.  He can learn to turn corners and navigate obstacles, thereby making himself much more self sufficient.  Again, look at the look of pride at all he's accomplished. 

 

Seth is making remarkable progress in every area of his life.  I realized that again when I went back last night and read through our blog from when we were in Ukraine and when we first got home.  He is becoming more and more like any other little boy.  The layers of institutionalization and dependency are falling off fast.  He is thriving.  He is happy.  And he is so, so loved.

 

We do still have our moments though, where we are reminded again of his past.  We have moments where we lose ground.  Moments where we're reminded of how lonely, how sad, how neglectful his life was.  And in those moments, my heart breaks for this beautiful little boy.

 

We had one of those moments tonight. Jeremy, a few of our children and I were in the living room talking and Seth decided to go downstairs.  Without assistance, Seth goes down the stairs by sliding on his bottom.  He's very good at this.  We continued to chat with our kids and catch up on our week, and about 20 minutes later, Jeremy got up to do something.  He looked down the stairs and Seth was stuck on the bottom stair, feet folded back in a W.  He was laying back to avoid falling forward and appeared to not be all that uncomfortable, but I have to wonder if any of my other children would have patiently waited without calling out, for 20 minutes, if they were stuck.  Would I have?  No, probably not.  Seth knows no different.  No one ever promptly responded to his pleas for help.  And so Seth quit making pleas.  Seth waits.  Patiently.  Until I notice him.  He waits his turn.  He hopes he gets a turn.

 

Seth's biggest struggle continues to be communication.  His speech therapist has determined that Seth does not have a speech disorder. There is no physical reason that Seth isn't talking.  Seth isn't talking because Seth was never talked to.  Seth never learned the importance and purpose of communication.  Seth learned to take whatever was handed him and to fend for himself whenever possible.  His wants, his desires, his choices, were irrelevant.  We've had to teach Seth to make choices, to communicate his preferences, that his preferences matter!  We've had to teach him that communication is essential.  Verbal speech is slow in coming, but his speech therapist is certain we will get there.  Until then, we continue to teach him choice making in everything. 

 

"Would you like a banana or orange?"  "Would you like to wear the blue shirt or red shirt?"  "Would you like to take a bath or swing?"  "Would you like to play on the iPad or read a book?'

 

Things I never purposefully set out to teach my other children. Things we just do, as parents.

 

Seth started using a "Seven Level" AAC at school but seems disinterested.  We suspect it's because it looks like a toy and for the most part, Seth is turned off by toys he feels are baby-ish.  So they've started him on an iPad instead, and backing it up with PEC's, and he's doing much better.  He is learning that when he initiates communication,  when he takes control of his communication, he can make things happen.  Not even just making a choice.  But him initiating a conversation. 

 

"I want ____  please". 

 

Big stumbling block for Seth.

 

Because it never worked for him before.

 

Willful communication is power.  It is control.  It is independence.

 

Seth's story is really all about a little boy's journey out of dependency, shaking off the dust of helplessness, and learning that he is strong, capable, and resilient.

 

Seth is all of those things, and so much more.  He's only just beginning to realize it.

Our mini vacation and another lesson learned

This weekend, our family made a fast decision, packed up some bags and took a quick overnighter to Seattle. Between Seth's adoption and other family things, we have not had a real vacation with our kids in over two years. Realizing that one night is definitely not long enough to constitute a "vacation", it was all we had, and we enjoyed the spontaneousness of it. We took as many kids as could get away on that short of notice, and felt grateful that for the ones we were leaving, we knew they'd be good, make wise choices and take care of each other. They even made it to church on time. :) The wildest thing they did was run to Taco Bell at 4:00 in the morning. What a blessing that is!

On our way out of town, watching "Brother Bear".... 

 

Fun with flashlights... because what else to you do to entertain kids in the car after dark?

 

 

I swear this child is part fish.  Here he is showing off a new skill that his PT has been working with him on.  Hanging on to the side of the pool and side stepping, except he can't resist bobbing his face under water the entire way.  :) 

 

 

Adam and Hannah, hot tubbing...

 

 

Playing on the iPad, while waiting on some pizza.

 

We had a great (albeit short) trip, made some fun memories and learned some things along the way.  We saw several moments where we were reminded what amazing kids we've been blessed with... Hannah's kindness towards Seth in the pool.  She loved helping him swim, swimming on her back, with him floating on top of her. 

 

I gave each of the boys a quarter to buy a prize out of those little machines at Pizza Hut. Noah chose to use his to buy his sister a piece of "jewelry". I loved it so much that I gave him three more quarters so he could buy the other three sisters a piece of jewelry too. Each sister is now proudly wearing her "jewelry".

 

Sarah was so sweet to Noah and shared her iPod with him on the way home.  They played together for a very long time and it was sweet to watch our two children, 9 years apart in age, laughing and having fun. Our girls are always very kind to their brothers and always quick to help out.  We're grateful they truly like each other, even in the confines of a five hour trip in a suburban. 

 

We are so looking forward to a real vacation this year.  Our one day "quick trip" reaffirmed to us how much we've missed things like this, where we set aside the busy-ness of our lives, and all of the chores, and the doctors appts, and therapy appts, and IEP meetings, and basketball practices, and piano lessons, and grocery shopping.... and just spend some quality time laughing together.  Because it's those moments that make all the other moments worthwhile. 

 

We also learned some new things about Seth.  Seth has come a long, long way, but he is far from healed.  Seth has emotional baggage that will take years to resolve. Other than two quick trips to Montana, this was the first time in 15 months that Seth has not slept in his own bed.  He doesn't know what  a "mini vacation" is.  He had no frame of reference for "hotel room".  He was unsure of this whole idea when we hit the half way mark on our trip over.  I underestimated that.  Seth did well in the car ride, although the longer we drove, the more anxious he clearly became.  He ate a good lunch in the car and had a great time in the pool.  When we went back up to our room, it went steadily downhill. 

 

He refused dinner.  Refused snacks.  Refused drinks.  He HATED the hotel room.  He hated it so much, we had a very hard time getting him to sleep.  He cried for over two hours and we were at a loss as to what was wrong or how to help him.  He finely fell asleep, although it was not a good sleep.  I woke up at 2:51am, rolled over and looked at him, and he was wide awake, staring at me.  What was going on in the little brain of his?  Why was he so sad?  Why was he watching the door?  Why did he cry louder each time I walked away?  I tried laying with him.  I tried rocking him.  I tried playing primary music on the iPad, I tried sleeping sitting up, holding him, I tried walking around the room with him.  Nothing worked.  He was in constant vigilance. 

 

In the morning, we went down for breakfast.  I expected him to eat a ton, since he hadn't eaten anything since 2:00 the day before.  He did eat, but not as much as I thought he would.  We took kids back to the pool and Seth played, but with less enthusiasm. He was definitely more than ready to get out of the pool when we said it was time. Very unlike him.  He cried when we came back up to the room.  We quickly changed clothes and packed for leaving and Seth was elated to change clothes.  He even handed me his AFO's.  He was practically giddy as we left the hotel room.  After about an hour in the car, he began to deteriorate again and I knew he really needed sleep.  We stopped for lunch, where he cried almost the entire time and would not eat, and then became hysterical when we put him back in the suburban.  I gave him something to help him sleep, and thankfully, he finally fell asleep.  When he woke an hour later, he was a lot less weepy, but still anxious.  He was better if I sat beside him, and so I did. But he still would not eat.  We made it home, where he gladly fell into bed with a kiss and a prayer, and five hours later, he still has not moved.  

 

We are so glad we went.  Not only did our family need this time together, but we know that anything new is very hard on Seth, even after 15 months.  A new experience will be a new challenge, every time.  But now that he's experienced a "vacation" and he knows he comes home again, our next trip will be much better for him.  

 

It hurts my heart to be reminded again that he has no life experience for this type of thing.  He has no field of reference for a family packing up the suburban and heading out for an overnight getaway.  And anything he doesn't "know" yet, makes him apprehensive.  Because his mind will always always take him back to where he's come from.  Always. 

 

As I was talking with a friend of mine about this, I thought again just what families do for these kids.  It's not just a nice idea to adopt a child from an orphanage.  It's not just a way to grow a family.  Because really, this isn't about the family we used to be.  It's not about us doing something nice for a child.  It's not about us.  It's about him.  Adoption is about Seth.  It's about rescuing one boy from a life I cannot even wrap my mind around.  The loneliness.  The neglect.  The boredom.  The aching for love.  The missed life experiences.  Adoption is fixing that for a child.  For them, it's huge.  It's monumental.  It's life changing and life saving.   

 

Can you even imagine what his life was?  What any orphan's life is?  Would you ever want your own children to live that way?  Of course not.  But he IS ours.  And we're in the business now of raising a child who's come from that background, and so I need to stop being surprised that he is still absolutely terrified that at some point in time, he will be "transferred" again, out of our care and into his next facility.  I need to quit being surprised that he's afraid this will one day end.  I need to expect that he will worry when faced with new experiences, because who would want to give up a family, to go back there?  Who would want to lose a family it took 6 1/2 years to find, only to be abandoned again?  Who can blame him for being anxious about that?  And you know what all this really means?  You know what the beauty of this is?  He loves us.  He really, really loves us.  He's attached.  He's found a place where he fits in, and he knows it and he's clinging to it.  If he's scared to lose it, it's only because he knows what it's like to not have it, and he never, ever wants that again.  He wants us.  And he's trying desperately to trust that we want him too.  And so every experience like this proves to him again that he is ours.  And we are his.  Forever. 

 

 

Overcoming and Becoming

Fifteen months next week.  That's how long Seth's been home.  That's how long he's had a family.  That's how long he's been a son.  A brother.  You want to know what I think about older child adoptions?  I think they are amazing.  I think they are also amazingly hard.  It's hard to see what institutionalization does to kids.  It's hard to see them fight their past, to overcome things that should never have happened to begin with.  It's hard to watch a child hurt, and it's hard to heal that hurt.  I alternate between being furious at his birth mom and being furious at the country who did this to him.  No child should ever have to overcome what he's been through. 

To take a child who is completely shut down, traumatized, delayed, non verbal, neglected, understimulated.... and watch them change into the person they were meant to be all along.... happy, connected, healing, learning, communicating, loved, confident, strong...  That, my friend, is a miracle to watch.  Older child adoption is a beautiful thing.  Completely and totally worth it.  Worth every struggle, every worry, every prayer, every tear, every frustration, every sleepless night.

Seth has taught us things we never knew we didn't know.  He's taught us more compassion, more love, more patience.  Watching my children fall in love with him, circle their own wagons, fight for him, grow with him, protect him..... well, that's been an awesome thing to watch.  To see them develop an aching in their heart for a messy, hurting little boy from across the ocean.  To see their eyes opened.  To watch them become his biggest cheerleaders.  Family. 

Seth's now in school..  He's a fast learner.  He's curious.  Inquisitive.  A problem solver.  He's blowing goals out of the water, learning new things every single day.  This boy.... this boy who came home not able to feed himself or brush his own teeth, this boy who was obsessed with water, became overwhelmed at everything, was completely sensory deprived, had likely never been read a book.... well, look at him now.  He's doing puzzles, stacking blocks, independently navigating an IPad, learning colors, shapes and letters.  Even more important than all of that though is his emotional health.  I think Seth has aged at least five years in the last 15 months.  In the video below, you can see it happening.  You can see him becoming healthier, stronger, more confident as the days go by.   He's firmly attached, happy, bonded.  He tries to be obedient.  Usually.  :)  He's learned his needs will be met promptly.  He's learned to trust.  He's learned we will not hurt him.  He's learned we will not leave him.  He's learned we will always act in his best interest.  He's learned what family is and why every child needs one. 

This little boy testifies of why children need families.

 

Every. Single. Day. 

This video was made by a friend of mine.  It's in chronological order, starting with the day we met him and ending just a few weeks ago. 

 

 

The Boys of Magala

Seth's previous institution is made up of about 70 children/ men.  Most are boys and men.  About 5 are girls.  There were roughly 5-6 groups, with boys/ men being grouped according to abilities/ disabilities.  They range in age from 6-35 years old.  At 35 years old, they are transferred out to a lower care facility.  I'm not exactly sure what constitutes "lower care". 

These boys are real.  I know them.  I know their names.  I know their trials and their personalities.  They are as real as our children.  They laugh.  They cry.  They get hungry.  They get cold.  They are tough boys and men, making the best of what life dealt them.  They are survivors, in every sense of the word. 

Here are a few of the faces of Magala.

This is Ivan.  Ivan is a sweet, sweet boy.  I'm not sure of his age, but he's certainly over 18.  He is a hard worker.  He helps the caregivers with chores, hanging laundry, carrying food and trash in and out.  I never heard him complain.  In fact, every time I saw him, he had a smile on his face.  He'd give us a friendly wave and keep on working.  I'm not sure I ever saw him when he wasn't working.

Vasha is one of our favorite boys.  Vasha is 17 now.  He's a smart boy.  We spent a lot of time with him.  He'd come see us every day and would walk with us, play with us, talk with us.  Vasha is very friendly.  A polite boy.  I have no idea why he's in an institution.  He's warm and funny and very intelligent. 

See the boy in the blue sweater?  His name is Uria.  Uria was Cohen's (Josiah on RR) buddy.  Uria helps a lot with the younger children.  When Cohen showed up at the institution, it was Uria who took him under his wing.  He patiently took on the role of big brother and looked after Cohen.  He'd push him on the swing, or walk him around and around and around the building.  At the institution, there are several boys who seem to be primarily helpers for the children.  Uria was one of them. 

 

Speaking of boys who help care for children, meet another Ivan.  Ivan is in the blue stocking cap and gray jacket.  He has apert syndrome and is totally awesome.  He always has a young boy with him.  Wherever Ivan goes, the little boy goes too.  Turns out, that's his little brother.  He's looking out for him, in the toughest of conditions.  :(  Ivan is a fabulous artist.  Considering his fingers are fussed, it's a miracle he can do all that he does, but every day, he'd bring us a new work of art he'd completed.  Ivan has a good heart and is an amazing big brother. 

Oh Sasha... what to say about Sasha?  Sasha is completely childlike.  He is innocent and pure and breaks my heart.  Of all the boys there, he's the one I worry about the most.  Sasha is 35, and that means he's about to be transferred.  Transfer will not be kind to Sasha.  Sometimes the director can keep men there by letting them work on the grounds.  I am hoping that Sasha can stay.  Sasha brings out every urge I have to protect.  Maybe because he's helpless to protect himself. 

And of course, I have to add a pic of "Frank" (not his real name).  Frank is in the gray sweater.  Frank is smart and fast and sweet and needs a father so, so badly.  This boy needs to be playing with legos in someones living room and going fishing and getting an education.  I love Frank.  My heart hurts for Frank.  Not a day goes by that I don't think about him and wish we could have tucked him in our pocket and ran.  Ever feel like someone got left behind?  Yeah.  That's how I feel.  :( 

Frank is listed on Reeces Rainbow.  He needs a family.  There is no future for him where he's at.  He'd be an amazing son.  I have tons of pictures and a couple videos of him.  And lots and lots of information.  Please contact me if you are looking for a sweet 12 year old boy. 

http://reecesrainbow.org/?s=Frank

 

These are a few of the real boys living behind the gates of Seth's institution.  Real boys and men that I met and played with and got to know.  When you choose to help Helping Hands USA by providing Christmas for them, you are choosing to help one of these awesome boys.  You are bringing real joy to real people.

 

Christmas is eight days away.  We are only at 14% of our goal, to provide Christmas in Magala.  Could you donate to provide Christmas to Ivan?  Or Vasha? Or Uria? Or Ivan? Or Sasha?  Or Frank?

 

Real people, needing real help, needing to feel real love and charity.  It doesn't take much to make them happy.  Please consider a tax deductible donation through the chip in up above.

 

Thank you, from me and my friends.

Christmas in Magala

This year, our family is greatly anticipating and enjoying the Christmas season.  Last year, Seth had only been home 2 months and while he liked the festivities, he really didn't understand what was going on.  This year, he is noticing and understanding so much more.  It's fun to see his eyes light up when we go look at Christmas lights.  It was heart warming to watch his response to putting up the Christmas tree.  We have a lot of family traditions that center around Christmas and Seth is very much enjoying them.  We're doing a lot of talking about Christmas, the birth of Christ and the reason we do all the fun family things we do in December.  It's all brand new to him.  To see the wonder in his eyes in both amazing and heart breaking.

I wonder what Christmas' were like in Ukraine.  I wonder if he ever received a present.  I know he had nothing to his name when we left the orphanage with him.  Not a stuffed animal.  Not a toothbrush.  Not even a pair of underwear to call his own.  Six and a half years of life and he had not one material possession. 

I've done some thinking about other boys.  The boys at Magala.  The boys at Seth's institution.  Will they know it's Christmas?  Will Santa visit?  Will they hear Christmas carols about Christ's birth?  Will they dance?  Will they laugh?  Will they enjoy a feast fit for a King?  Probably not.  It's likely not in the budget.  Outfitting 70 boys with Christmas gifts and celebration would be expensive.  For Magala, Christ's birth would likely go uncelebrated.... unless someone helps them.  Unless someone brings Christmas, and Christ's love to them. 

Helping Hands USA would like to provide Christmas for Magala.  They'd like to share a celebration, leave a gift with each boy, provide a good holiday meal, and teach the boys that Christ is real, and they are cared for.  They need our help to do it.  Could you help provide? 

A donation of $15 would provide a party, a gift and meal for one boy.  There are 70 boys who live there.  Could you donate Christmas to just one boy?  There's a chip in on my blog.  If you can help, we would be so grateful.  Together, we've gotten wheelchairs to them, shipped clothing to them, provided fans and CD players to keep them entertained.  Together, we can do mighty things.  Together, we can bring them the spirit of Christmas.  It doesn't have to be a large amount and it is tax deductible.  Any amount is helpful.  I ask you from my heart to please consider their happiness, their needs, this season.  It takes so little to make these boys happy.  Please be a part of their Christmas miracle. 

 

From a primary song, entitled "How Will They Know"

 

"How will they know, the ones for whom we care,

That God is love and with us ev’rywhere,

That life is good, with blessings all can share?

How will they know unless we teach them so?"

 

This, my friends, is how they will know.  This is how we teach them.

The Twelve Days of Christmas For Moms with Kids with Special Needs:

Someone posted this on my facebook page last week and I love it.  All of this and more has happened to me during the thirteen months I've parented a child with a special need. 

The Twelve Days of Christmas for Special Needs: 
 

On the first day of Christmas, the good Lord gave to me: a child with special needs.

On the second day of Christmas, the good Lord gave to me: a heart full of love for my child with special needs...

.
 On the third day of Christmas, the good Lord gave to me: an ache in my heart and a heart full of love for my child with special needs.

On the fourth day of Christmas, the good Lord gave to me: a tear in my eyes, an ache in my heart and a heart full of love for my child with special needs.

On the fifth day of Christmas, the good Lord gave to me: an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the sixth day of Christmas, the good Lord gave to me: a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the seventh day of Christmas, the good Lord gave to me: a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the eighth day of Christmas, the good Lord gave to me: supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the ninth day of Christmas, the good Lord gave to me: remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in heart and my heart full of love for my child with a special needs.

On the tenth day of Christmas, the good Lord gave to me: an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the eleventh day of Christmas, the good Lord gave to me: a sense of pride and courage, an appreciation of small accomplishments, remarkable doctors & therapists, supportive friends, a sense of humor, a ray of hope, an unsuspected strength for the tear in my eyes and the ache in my heart and my heart full of love for my child with special needs.

On the twelfth day of Christmas, the good Lord said to me: Reach out and share your sense of pride and courage, your appreciation of small accomplishments, your remarkable doctors & therapists, your supportive friends, your sense of humor, your ray of hope, your unsuspected strength for the tear in your eyes and the ache in your heart and your heart full of love for your child with special needs.

 

 

 

Merry Christmas, to all my friends who parent amazing children with special needs.

Where It All Began... The Chernivsti Baby House

Seven and a half years ago, in a town in Ukraine, a little boy was born.  He was born 6 weeks early, weighing 4 pounds, 2 oz and just 17 1/2 inches long.  He was blessed with beautiful blue eyes and sandy blond hair... and cerebral palsy.  I don't know all the details, but in what had to be a heart wrenching decision, his mother decided to give her son up to institutional care, believing that the state run orphanages were better equipped to care for a child with special needs.

That little boy lived the first two months of his life in a cold hospital bed, surely wondering what had happened to his nice warm safe surroundings.  A stark contrast to how life should have been.  At two months of age, that little boy was taken to the Chernivsti Baby House, where he became it's newest little charge of over 100 children.  He was issued a crib, a stack of diapers and a string of caregivers in charge of feeding him, changing him and keeping him alive. While baby houses are never ideal, Seth's first six years were safe.  He was well fed and generally cared for.  I know he didn't make it out of his play pen very often, but his baby house is considered one of the better ones in Ukraine.  His director was a kind, no nonsense woman who knows each child by name and would never stand for abuse or massive neglect. And for that, I am thankful.  The neglect that Seth suffered was due to the nature of institutional care- numerous children with many needs, not enough caregivers, not enough funding, rotating care, not enough hours in the day to stimulate the brains of over 100 young children... and so children lay in cribs and learn to entertain themselves all day long with virtually nothing.  That is the heartbreaking reality of even the best baby houses in Eastern Europe.

This is a peak inside Seth's baby house, where he was cared for for 6 1/2 years.  This place has a special place in my heart, because they took care of my boy before I knew he was my boy.

The entrance to the Chernivsti Baby House (that's our awesome facilitator):

 

The playground (Seth was not allowed to go outside, but I am sure many children enjoyed it):

 

Ludmilla, the director who said she loved Seth and that he was smart and sweet:

 

 

The therapy room, one of the few places Seth was able to go:

 

 

Hot tub donated to the baby house by my friend Stefanie for water therapy.  Ludmilla said Seth loved water therapy.  And he still does.  :)  Can't you just see him in there?

 

 

A caregiver working with one of the children:

 

 

Massage therapy.  I'm not sure how often they receive it or how effective it is, but I appreciate that they are doing the best they can:

 

 

Speech therapy, which they do as often as time permits.  With 100 children, it surely isn't enough.

If you look over in the sidebar to the pic of Seth in his overalls, you'll notice the same curtains and same white door.  Different table, but this was two years later.  I don't know if this is the room that pic was taken in, but that's a little surreal to me. 

 

Before we left Ukraine with Seth, I knew I wanted to go meet Ludmilla.  I knew I wanted to tour the baby house. I knew I needed to see for myself where Seth had spent so many years.  To understand him, I needed to see where he had lived.  I found Ludmilla to be gracious and efficient.  When she asked me what I'd like to know and I stumbled to say "Nothing really.  I just wanted to thank you for taking care of Seth and I wanted you to know he has a family who loves him now", she looked at me as tears welled up in my overtired, stressed, worried eyes and kindly gave me tidbits about my boy, insight into the little boy he was before he was transferred.  Little did she know that the boy she was describing was nothing like the little boy who was waiting for me just outside the baby house doors, in a parked car, with his new daddy beside him.  Little did she know how badly transfer had effected him and how changed he was because of the whole experience.  Little did she know that her words would become my life line for several months while we tried to reclaim and bring back the little boy she had loved for six years. 

Now I have an opportunity to give back to Ludmilla and the Chernivsti Baby House.  And I am beyond thrilled to have this chance.  Ludmilla has agreed to allow Life 2 Orphans an opportunity to help give Christmas to the more than 100 young children in her care.  It's called "Operation Christmas Cheer", and for $100, the children in the Chernivsti Baby House will be given a Christmas.  Each child will receive a small present, food and a Christmas party.  That works out to roughly $1 per child.  And they will be thrilled! What a treat for the children living inside.  What a joy Christmas morning will be!

Could you help be a part of this?  It won't take much.  Ten people donating $10 each will get us to our goal.  Or five people each giving $20.  Life 2 Orphans is a non profit entity, so this is a tax deductible donation.  This is their website:

http://www.life2orphans.org/cms/node/83

Click on the link.  Right under the pic is a link that says "Donate on-line".  Click on that and it will direct you to their paypal account.  There are some very important parts to this.  Grab a pen and paper and pay attention to this part. 

1. After you enter your payment, you will get a page that says "Please review your payment".  On that page, there is a blue link that says "For special instructions to the seller".  Click that and a box will open.  Specify in there that it is for "Operation Christmas Cheer" and that you want it to go to the Chernivsti Baby House, and

2. Let me know.  This is important.  Leave me a comment (or a fb private message) telling me how much you were able to donate.  I have committed to raising at least $100 for the baby house.  Your comments are the only way I have of tracking donations and knowing where we are on our goal.  I moderate all comments, so if you'd rather it be anonymous, tell me and I won't make your comment public. 

I know Christmas is a tight month.  We're all providing for our children.  We're all busy.  We're all broke.  :)  But this, to me, is what Christmas is all about.  As a family, we can surely part with $10-$15 to make Christmas happen for children who have nothing.  I can pull that money from somewhere.  To help her. To help them.  I can do that.  Can you help? 

 

***  Update!!  Thank you so much to everyone who helped us reach our goal of $100.  We did it, and I knew we would.  It makes me so happy to know those sweet children will feel loved on Christmas morning.  If you'd still like to contribute, you are welcome to.  There is nothing that says we can only donate $100.  Only that we commit to raise at least that much. 

A beautiful sight!

I'm always amazed when I see who all has donated to Seth's former institution.  When I see the list, I see that so many donations are from people I don't even know.  People who do not actually know Seth.  I'm amazed that Seth's story has touched so many and I'm reminded continually that one person can make a big difference.  In fact, we make a difference one person at a time, one good act at a time.  Today, I received pics of the wheelchairs arriving in Magala.  In truth, they've been there for a few weeks, but I was waiting for pics before I said anything, because I know you like pics.  :)  So here is what you did...

You took this:

And helped turn it into this (doesn't he look better already???)...

 

and this....

 

 

and this....

 

Thank you, from the bottom of my heart.  To see them in decent, more modern wheelchairs, in good repair, is so heart warming.  Because I know the way they've been living.  I know how bad their wheelchairs were.  I know how broken they were, how old they were, how ripped up they were.  I knew what the institution was having to do to keep them in use .  They really have so little.  They expect so little.  I believe they should at least have a comfortable, safe place to sit.  This is well outside the meager budgets of an institution.  This was your doing, and I thank you for helping Helping Hands USA get them what they needed. 

 

Don't ever underestimate the impact of one small act of charity. 

 

Together, lots of small acts add up to big things.

 

If you have not already done so, please consider liking Helping Hands USA on facebook:

 

http://www.facebook.com/#!/pages/Helping-Hands-Usa/239641486137013?fref=ts

 

Visit their website.  Follow what they're doing in Ukraine.  Support them. They are doing amazing things among those who are the most vulnerable, most needful. 

 

http://givethemjoy.org/

Some experiences change your perceptions forever

This past weekend, Seth had the opportunity to participate in a fishing activity called "Cast for Kids", an event for kids with special needs. It was Seth's first time out in a boat and first fishing experience.

So contemplative.  I often wonder what he's thinking. 

 

 

Wanting to take over for the captain.  :)

 

 

I think he likes fishing...

 

It was a great event focusing on what kids with special needs can do, with just a little thought and adaptation.  Afterwards, there was a bar b que.  I walked around the park and lunch, watching all the kids, all with various special needs, all being loved and supported not only by their families, but those in our community who value all kids.

 

And as I watched, as often does, my mind drifted to Ukraine.  Because some experiences change you forever.  As I watched the kids, many with CP, Down Syndrome and autism, I wondered how many of them, if born in another country, would find themselves in an orphanage or institution?  How many of them would have been seen as a burden, as too difficult?  How many of these moms would have been talked into abandoning their children to state care?  It's really all about location, location, location, isn't it?

 

Now, an argument can be made that in America, many children with down syndrome are aborted.  And that is true.  At least in Eastern Europe, they get life.  But how much better when they get life, a family, community support, an education, therapy and health care.  That's the best scenario.  And it is highly unlikely in Eastern Europe.  Looking at these kids and remembering those in Ukraine was a very stark contrast.  Seeing my boy, compared to those boys with CP, born in America who had therapy and love from birth, was eye opening.  I couldn't help but wonder how my friends in the institution would be doing, had they been born under different circumstances.

 

The two boys weighing heaviest on my mind are, of course, "Frank" and "Francis".  Last week, I asked you to vote to get "Francis" on Reeces Rainbow's Angel Tree, so that awareness for him can be raised, so we can increase his grant and help him find a family.  Thank you to all who voted.  Francis made it onto the Angel Tree.

 

The next category is Boys 10+ and I was thrilled to see my friend "Frank" as one of the boys who has the chance to be on the Angel Tree.  Frank's chances of being adopted aren't good.  He's a boy, he's older, and he lives in an institution.  That's a lot of strikes against him.  Raising his grant is the best way we can help him.  Overcoming the barrier of finances is sometimes all it takes to motivate someone to take that leap of faith for an older child.

 

I can tell you a little about "Frank".  Jeremy and I fell in love with him.  He's little, he's spunky, he's smart.  He's a sweet boy who seems rather unaffected by his surroundings.  He runs around a lot, likes to play ball, play on the trampoline, and do puzzles.  He interacts well with the caregivers and other boys.  Everyone seems to like Frank.  We never saw anything that concerned us about him, and quite honestly, we're stumped as to why he's there and not at a boarding house.  Sometimes very random decisions are made.  Who knows how he got there?  I just know he needs out.  He has no future where he's at, and without help, he's never getting out.  Institutions are a one way ticket to nowhere.  And this little boy deserves a future. This little boy will be a blessing to any family.

 

 

 

This little boy just needs a chance.  I have so many more pictures, stories and even videos of Frank.  If you want more information, please ask.  I will contact you and answer any questions I can.

 

Here is the link to Reeces Rainbow's Angel Tree for Boys 10+.  Please take just a moment to scroll down, find Frank (listed first) and click "vote" above his pic.  That's all you have to do to help Frank find a family.  That's how you can help an orphan, today, right now.  Just a click.

 

http://reecesrainbow.org/my-own-little-starfish

 

 

The good, the bad and the downright ugly

Seth's been in school now for three and a half weeks.  For now, he's mainstreamed into a kindergarten class, without an IEP, but with a 504 (physical accommodations) and a full time aide.  The school is scrambling to get the data they need to get an IEP in place for him and we're all doing the best we can until then.  Each state is different in how they handle IEP's, and in particular, internationally adopted kids.  Our state seems to be one of the more conservative ones, and while we are all reasonably sure he will qualify for an IEP, our district is making sure laws are followed and that Seth's rights are protected.  Which is something I'll appreciate more after the IEP is in place.  For now, it's a little uncomfortable to watch. 

It's been a tough transition.  We are fairly certain he never had a book read to him til we showed up a year ago.  He had never held a crayon.  I'm not even sure he had regular access to toys.  So it is honestly a miracle that he is doing as well as he is.  I will promise you that you can love and protect an adopted child with the same fierceness that you can love and protect your biological children.  You can fight for them, scream for them, cry for them and defend them with the same zeal you can your biological children.  To me, there is no difference.  He is my child.  I am his advocate and mother.  I am honing my skills. 

In the past three and a half weeks, he's learned that school is safe and fun.  He's learned that we come back to get him.  He's learned that he gets a tasty snack each day and time on the playground.  He's learned the IA, the PT and OT are all nice people who are trying to help him.  He's learned that the school is full of people who genuinely care about him.  He's learned to be secure in another situation, even when his family is not there.  That's a big step outside his comfort zone and it takes a lot of trust on his part. 

Overall, Seth has made remarkable progress.  In a casual assessment today, I realized he's developed cognitively by two years in the past 11 months.  He's catching up, and he's catching up fast.  He's showing us that he's an eager learner and that he has a curious and inquisitive mind.   His speech is picking up a bit. He's making more and more approximations all the time, and most days, he speaks at least some, even if we can't always understand him.  Seth is in line to get all the support he needs to get an excellent education and we feel blessed with all the resources that are at our fingertips.  I feel blessed with a team of therapists, both in and out of school, who understand Seth, who call him out when necessary, and who are unwilling to easily let him off the hook. 

Seth is also making amazing progress physically.  He's started bearing more weight, standing with less support, using the counter tops for balance only.  He's side stepping now, and learning to get off the toilet and out of his chair at the table on his own.  He's learned to get himself into the tub and using his walker more and more. 

So what's the downright ugly?  The downright ugly was his starting point.  How ridiculously delayed he was when we brought him home, and how that didn't have to be the case.  The downright ugly is that this bright, happy, energetic, sweet little boy spent 6 years wasting away in a playpen when he could have been learning and growing.  The downright ugly is that there are so many kids just like him in Ukraine right now.  Just waiting for a family to open up a world for them and give them access to love, books, a home, therapy, education, and health care.  Kids just like Seth.  But still in a crib.  That's the downright ugly. 

How do you help?  Well, adoption, of course, if you can.  But if not, you can donate to a family in process of adopting. 

http://reecesrainbow.org/category/sponsorafamily/almostthere

Or you can contribute to Helping Hands USA and assist in the distribution of humanitarian aid to orphans, to make their life a little brighter and more bearable. 

http://givethemjoy.org/

Or you can vote for Francis on the Angel Tree.  A simple vote.  A simple click.  It helps him.  It could help him find his family.  So that he can have the same blessings and opportunities that Seth has.  Will you click?

http://reecesrainbow.org/my-own-little-starfish

 

However you choose to help, just do it.  Click.  Donate. Give. Advocate. Adopt. 

Meet another one of Seth's friends

Okay, to be perfectly honest, I did not think we'd reach this last goal.  When Helping Hands USA approached me, I was nervous.  We only just shipped out the wheelchairs and here I was, asking for help again.  And to make it more complicated, we only had four days to do it in.  I decided to hope for the best, and now, here we are, sitting at 100% once again.  Why?  Because I have pretty amazing friends who step up when they see a need.  I cannot thank you enough for loving these boys like I do.  The boxes of clothing have been shipped out and are on their way to Ukraine.  I'll post pictures as soon as they arrive.  We could not have done this without you.  Because of your help, these boys, who have so very little, now have fans, CD players, someone who comes to read to them twice a week, new wheelchairs and new clothing.  But more important than all of that, they know someone loves them.  A special thank you to Helping Hands USA for coordinating all these efforts to bring aid into their institution.  What a blessing it is to me to have found them! 

If you are on facebook and haven't already done so, please go to their page and "like" and share them.  They are doing tremendous good for orphans in Ukraine. 

http://www.facebook.com/#!/pages/Helping-Hands-Usa/239641486137013

And now, I have another way for you to help the kids in this institution. See this little boy sitting next to Seth?  The little boy in the orange chair?

 

 

We have a chance to help him.  His name on Reeces Rainbow is "Francis".  Francis likely lived the first 6 years of his life at the baby house with Seth and Cohen (Josiah).  He was transferred at least a year before Seth was.  Francis is living at the institution where Seth was.  At the institution, they were in the same room and usually sat side by side.  Francis is a little boy who desperately needs a family.  He, like Seth, has cerebral palsy.  He gets food and he's clean, but he gets no mental stimulation, no therapy, no stretching, no schooling.  He sits in his orange chair day after day after day.  I can't imagine the despair and loneliness that must cause.  I can't imagine waking up every morning, knowing that all I'm going to do is sit in an orange chair until bedtime.  Francis is very sweet, but very delayed and very locked inside himself.  He has the most amazing blue eyes and of all the boys who worried me while I was there, he was the one who worried me the most.  Francis has significant needs.  And he needs a family to step forward to help him. 

We have a chance to help change Francis' life. Francis has been nominated to be on the Angel Tree this year.  The Angel Tree is a campaign that Reeces Rainbow does every Christmas season to raise awareness and funds for orphans.  Only 2 per category can be selected and it's done by votes.  If we can get Francis on the Angel Tree, he will have the opportunity to have a larger grant available to him, which will help us find his family. Voting is free and easy.  You can vote once a day through Thursday for Francis.  Can you help? 

Here is the link to Reeces Rainbow Angel Tree selection.  Scroll down to the boys, find Francis and click on the word "vote".  That's all.  That's how easy it is to help an orphan.  It doesn't get much easier.  Remember to come back and do it every day through Thursday.  Together, we can get Francis on the Angel Tree and help him find his family. 

http://reecesrainbow.org/my-own-little-starfish