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.