Mom is boring

The mental switch the bullying toggled on in Alex's brain is off.  His mom is boring.  Being in the house all day is boring.  His life is boring and all the homework sent from school is unchallenging and boring.  Alex hates being in a locked down situation that lacks drama or excitement.

Alex, of his own volition started practicing "being safe" today.  As if I kind of care at this point.  He is staying in a safe, controlled environment for awhile.  All the specialists continue to stress he must feel safe with me and be re-regulated. 

The little bugger is trying to seek spoilage levels of access to treats and privileges.  Not so much.  His mom is a cranky mom.  I now not only have to interact with a serious amount of specialists but I also have to deal with the school issues as to placement and proper support.  I hate doctors and bureaucratic red tape.  Cranky is the nice label for what I feel. 

But God as blessed us.  He has kept my son safe.  He has allowed this family to be normal and just be us today. 

Alex sleeps tonight, on the couch, listening to the most boring channel I could find on t.v.  

I remember being a happy kid well.  I am also an expert at finding the most unappealing moments of adult life so as to properly motivate a child to go to bed in his own room instead of working at controlling my nights.  Not even I liked the show Seinfield.  It put Alex to sleep within five minutes.  :)

He even turned his back so that he could not even catch a glimpse of the show.  :) Amazing.

Tomorrow promises to be another day when Mom is just boring, boring, boring.  And his files at the children's hospital have been specifically noted so that if he comes back they no longer give him an Xbox to play until 2 am; send in volunteers to amuse him; allow him access to TV; or grant his extensive food tray requests. 

Normal life.  Praise the lord. 

A better day today ...

Mostly we took it slow today - in a locked down house of course.  There had been a tentative appointment with some of the psychologists but after they checked in with me we all decided I would stay home with Alex today.  He woke up triggered but then I got him to go back to sleep and then just kept hitting the med times for him.  It seemed to have worked.

The evening meds pretty much knocked him out tonight.  Good thing.  The most likely time Alex will run is about 5pm to 8pm.  Getting past that time is particularly helpful. 

And he was a lot more like the little boy we are all used to, thank God.  The specialists have been pretty clear that I had to set, and hold clear boundaries, in order to help him feel safe again.  I had to reset his ability to self-regulate no matter how hard the task.  It seems to be working, though Alex is being particularly careful.  He was even unwilling to watch much TV today just in case he saw something that would "give him nightmares." 

We resumed some simple household chores and I held Alex's hand, tightly as he took out the garbage.  He kept saying, "I am holding on to your hand like a rock Mom."  And he did.  In the early days he and I developed a hand holding ritual to help him feel safe and calm down.  It is sweet that he likens holding onto to it "like a rock."  Kids seem to understand so much about the world.  I am certainly Alex's rock. 

I think that when he runs it is not really his choice and it all scares him at the end of the day.  Neighbors and their friends, all watched today, just in case.  But Alex held it together and did not run. 

We have an early morning appointment with his private phsychiatrist that hasn't really seen him since Alex stabilized and the doctor relocated his offices across town.  I am sure J.J. will not be pleased to see all his great work with Alex pushed back.  I do like that Doctor though.  He has been amazing in dealing with Alex and giving him time.  When everyone else wanted Alex medicated into the ozone, he refused. 

After that, I will return calls to the school about things.

My boss remains difficult at work of course.  He struggles with many issues and even though he knows what I am dealing with, he still threatened me with a personnel action if I didn't get my ID badge updated for entry into work.  You just gotta love that guy.  He is kind of like the scrapings off a barn floor.  His general lack of humanity makes me sad for his wife and children. But I would make a deal with the devil himself if it would help me save Alex.  Dealing with this guy is really no big deal in the balance of life.

Regardless, I immediately sent an email off to schedule the rebadging.  No sense in wasting time that does not benefit my kids. 

And, yes, our Daria is still on the scope in the balance of things.  She remains the most amazing child.  She is so amazingly normal.  And happy.  And willing to help out.  She does want in on the validation for "being good" but that only makes sense since I am pouring it on with Alex as part of the plan to re-regulate him. 

Daria remains this amazing oddity of life.  I literally went to a Russian psychiatric children's ward to meet and adopt her.  It was a place with walls and armed guards.  It was a place where a dozen white-coated doctors interviewed me before I was allowed to meet her.  It was a place that was scary if you walked down the wrong hall.  It was also a sad place because we saw kids there that we consider normal here at home.  It never was clear why she was there - for cleft palate we were told.  But she is the most amazingly happy and sweet child. 

I think this time with Alex has been difficult for her.  She does not understand what is going on and the stress has been off the charts sometimes.  I remember one day when we almost had Alex back in the house and she blocked my Mom from getting the door shut before he bolted again.  I did yell about that.  I think my Mom yelled too.  But then we apologized because in her mind she was simply helping her brother.

That being said, I am making sure her sense of the day is normal.  I also talk to her in Russian to give her a sense of comfort.  Sometimes explaining things in her native language is calming.  And I get to practice my very uneven Russian.  :) 

So, hopefully Alex will stay home and not run again.  Maybe my Mama heart can have some peace.  I just want my kid to be okay again.  I miss that little boy.  Regardless I find being his Mom such a joy.

Tonight I read them to sleep.  Life seems normal tonight.  May God keep us close.  Take care, Mama Sarah 

Gosh I hate bullies!

Alex has been being bullied for awhile at school.   The principal and the many teachers and assistants haven’t done much but fail Alex.  Alex finally fully broke.  It wasn’t enough I said he didn’t have to go back.  Alex is in a full cycling back to drama at the orphanage and what it caused him to think and then act out. 

 I never knew that when I witnessed village children yelling vile things and hurling rocks at the windows of Alex’s baby rooms in the orphanage I would one day see him replicate that behavior on my street.  Toward my house.  Toward the houses of neighbors with young children. 

I am going through a week plus of the police coming, calling for the emergency personnel, them strapping my nine-year-old son to a gurney and then driving away.  That has happened three times in the last week.  I am lucky I live by a Bible college and most of my street is of a like mind with me.  We are a gentle but loving and helpful crowd.  This morning my sweetie told the doctors if they released him he would simply run and harm again. 

They did, so he did.  It took nine of us today to bring him to ground with the many police, firemen and emergency personnel showing up after we had him in a hold.  When I called the Doernbecher Pediatric Unit of Emergency to ask them what to do, they refused my calls.  Because it is the premier children’s hospital in the state and it is also where Alex is treated for bilateral cleft palate, back to those people he went.

I am not sure why help is so hard to get.  Alex tells them he cannot stop.  He tells me what it helps him do – not think – when he does it all.  I tell the doctors.  They still send him home.

It is not because of insurance, because I cleared that hurdle with my people.  They wanted to commit last week but today they refused.

Maybe it is because he is still so young.  He is now only nine.  The monsters that live within him are not.  The head doc asked me if there was somewhere, a room he could be, so that I could open a door to let the dogs out or go to the potty.  I told him all the rooms have windows he can kick out.  Alex has disarmed a second floor alarm, kicked out the screens and hung from the window seal.  He did not let go because he was afraid to break something serious.  He only told me when he was running so as to let me know he can run, no matter what.

I asked the doctor this afternoon if he wanted me to lock Alex in a closet because that was the only option that fit his requirements.  He laughed and agreed that not even he could tell me to do that.  But then they sent me home with this child that cannot help but run and still they do nothing.

Alex was not put in a closet so do not worry.  He would never be put in one - for a variety of reasons.  He stayed close to his grandmother and then went to sleep on the couch where he can see me.  Anyway our closets are simply stuffed full.  And I would never let him in one anyway since he kept trying to hang himself from the clothes poles with bits of yarn when he first came home from Russia.  He was five then.

 I wonder what room the doctor was thinking about?  He asked me if any of the doors to the rooms locked.  I said no of course.  If your child is five and suicidal one of the first things you do as a parent is swap out all the door handles so as to make sure your kid cannot bar you from a room.  By nine, that kid needs what – I kind of don’t know.

We are all trying tonight.  Me, to not blow apart and keep it all together.  My mom struggles too.  His sister, home just a year and adopted literally from a crazy place, is taking it all in stride.  She plowed through a serious pile of homework, ate dinner and then slept.  “Her Alex” seems fine to her.

Alex is trying hardest of all.  He laughed a little hard at shows he does not like tonight.  He tells me he does not want the run but he is not sure he can stop it.  Thank the good lord for heavy rains tonight.  Maybe my son will survive another day. 

My son has hardened my position about adoption.  I remember an agency director of an adoption agency who was involved with Alex’s adoption from Russia telling me one day he should have never been made available for adoption.  I cannot imagine Alex without the protection of his family, friends and community all working for his survival.  He tries so hard and needs so much.

Since his break due to being bullied for being a partially repaired cleft palate child, I have cried a lot.  I simply sit down and cry when I am not chasing him down to keep him safe.  I seriously cry every time they take him away strapped down.  I have cried so many, many times.  I am not mad, I am just so scared for him.  I grieve too.  This is not why I adopted:  this is not what I wanted for my son. 

Then, through my tears, I ask my Mom in between her driving me back and forth to the children’s hospital, “what would it have been like if he had never come home?”  What if he was still there, where I found him?  There is no question in my mind – he could already be dead or even worse.  My beautiful, sweet, so trying to survive son – the monsters are back in his mind, may God watch over him.  The rest of us will do our very best to help him and keep him safe. 

I would not change a bit of it.  I will be here for him always.  He has hardened my position about adoption.  Children need help sooner and more of it.  They need families!  They need support systems!  They need doctors and specialists to help them.  They need people to step up.  Schools, doctors, therapists and other specialists need to get behind the adoptive parents as they help their kids. 

I am lucky.  We have lots and lots of doctors to help.  Because Alex is a complex cleft child we are always scheduling the next reconstructive surgery and so many people are involved in all those steps.  He is due back into surgery mid-July.  Of course he has to be alive and able to deal so lots of doctors watch and help. 

I am also lucky because I live on the street that I do.  So many people on my street come out every time to help.  People who can barely walk or cannot see come to help.  I live behind a bible college and many of those on my street either go there and/or have graduated from there.  We are a kind people.  Even tonight, neighbors across the street had brought in back-ups to help if my son ran again after being discharged from the hospital.  They will help as I keep him safe.

My son is nine.  He is a survivor.  He struggles.  His family loves him.  Many of his doctors are working to save him.  My heart breaks because his ability to survive life and/or be institutionalized is separated by such a thin barrier. 

My son has hardened my position about adoption. 

May God bless this humble home.  We love each other so much.  Please pray for us. 

Life is short.  Make the most of it.  Eternity is forever. 

The kids expect fairy tale endings from us of course

They really do. They wake up everyday hoping for it. I make sure their days start that way of course. My kids, adopted from radicially different orphanage settings across a vast country, still expect the same fairy tale ending every day.
They look for the loving family. They get it of course. They look for safety and comfort of course. They get it. They look for boundaries that prove they are loved. They get them of course.

Today was a difficult day for my miracle son. All day he struggled with oppositional and defiant behavior. All day he fought me making it a great day for the family. All day he fought me feeding him enough - at least what he thought was enough.

He lost any family engagement for oppositional or defiant behavior. We all simply refused to engage.

We had a great day as a family at one of our favoirate stores - IKEA. They have food and remodeling ideas. We were happy. Alex even ate so much that he could not eat any thing more. Like his own fairy tale ending.

Before Alex came home his life left him often hungery. The whats or whys do not actually matter. What matter is being fed enough - to him at least. But he still struggled. Sometimes he conquered the demons he woke up with today and sometimes he did not.

When we all got home, he went into timeout. To give the rest of us a break if nothing else.

He did a bathroom break and bolted out of the front door of our house. He was so emotional. Like he was in a life or death situation. He kept threatening to run away. He said he knew the way to the other place. Neighbors came out. Nieghbors helped watch for him.

Alex was in a state. After awhile I came out and talked to a neighbor about a new baby the family had in their home. Alex finally came over and cooed over the baby too.

He wants the fairy tale life. Family and babies included.

After that teen mom left with her Dad (my heart breaks for him and his wife) Alex ran back across the street and yelled at me. I could see, he wants to come home. But he also needs me to want him home. I asked him to come home, arms spread and he did.

He sat on my lap and cuddled for all to see. He wants all to see that he has the fairy tale Mom.

I am not of course but I love my kids and do what they need. But maybe I am the fairy tale Mom. I am there, in the way they need, when they need it.

It is a simple solution. Be there when they need you to be. Today Alex needed to be a world class difficult child, have family still continue, be fed and then have public validation by all who surround his home.

I remember specifically remember town kids hurling stuff and vile insults at the windows of his orphanage rooms as I left so I get him needing such a public, in situ, validation of his family being okay.

So my boy wonder simply validated his own miracle today.  Fairy tales do come true - for little boys and for Mamas too. We are the lucky ones. May God continue to bless this home.

Thanks to Vica's Mom!

You are so right about the school system.  Alex got hit yet again today and they moved him to another room to sit with a para-educator for the rest of the day.  At least she found his medications I sent to school and had told the teacher about first thing this morning.  The school people plied him with three lollipops and two cookies.  Classic case of an abuser rewarding a child so they will not tell.  Alex told of course. 

Gosh these school people make me mad.  Alex will stay home tomorrow of course and I have a call into the principal.  The knife-wielding 10-year-old will be back in school tomorrow.  Not a day for Alex to be there.

We will all meet on Wednesday.  I think it is time not only for a permanent para-educator to be assigned to Alex but also a change in schools.  What a crazy crazy world confronts the parents of traumatized kids. 

I finally think I figured it out - it is not Alex that is the problem - it is the fact that he is being constantly anxietized in the school setting.  He is fine if not traumatized.  I guess that is why neither me nor the doctors could see the problem.  We do not cause him to endure more than he can.

And he has lost another academic year. 

Met with the Feeding Team today with Alex ...

Sounds kind of silly I know but there are people out there that specialize in coaching kids to eat.  Those awesome people came to see Alex today.  We all met before, talked about his medical situation, and then went to join him for lunch.  The team watched him eat and I watched the classroom. 

They have many ideas of how to address his issues.  My wonder boy eats but there are many ways he compensates for the problems his condition present to him.  His will to survive is awe inspiring. 

The team will find ways to help him eat better.  They can help him learn things about using his mouth that most of us take for granted.  We learned it all in babyhood.  Alex did not.  I am giddy with excitement about what they will put together for him.  Another step toward normal for him.

Back to me watching the classroom.  It was out of control.  In a B-room that is not good.  The classroom had already been cleared once and a particularly violent kid was in the principals office being suspended.  other kids were pushing into Alex's space.  A boy pushed his chair close to Alex and my son stood up and moved his chair a couple feet closer to me, away from the boy.  When I asked him why, he said, "that is one of the boys that hits me Mom."  And then he went back to eating.  My kid was doing what I taught him - he got out of striking range.  Good boy.

None of the teachers saw the interaction.

He got hit today of course.  He told me and the teacher confirmed but said it wasn't too bad.  Alex said it hurt and he did not like it.  After awhile I asked him if he wanted to go home.  He said no. 

I left and then later the teacher called me because Alex was seriously escalated.  I missed the call and did not return it.  What do people expect?

What I am also seeing is that Alex is fine when not subjected to violent behaviors.  At school he is expected to endure violence and assault from other kids.  When he blows apart when he can no longer endure, the teacher and others cannot adjust. 

Whatever.  The boy wonder will need to transferred again.  This is not the right place. 

I suspect that if Alex is not subjected to harmful behavior from others in his class, he will be fine.  He is in every other setting in his life. 

His recertification for IEP services is next week.  I suspect I will insist on a change of venue.  Alex is done with this scene.

other than that he is an awesome kid.  No problems at home or during after school activities - other than he is a nine-year-old boy.  And he continues to endure an amazing amount of doctor appointments with a calmness and sense of humor I do not think I could manage if I was in his shoes.  That scope alone would have sent me running for the hills, never to return.  Alex remains my hero. 

He is a seriously awesome young man.  I am lucky to be his Mom. 

I hate being such a sad sack ...

That comment ages me I know.  But it seems to fit.  I like being happy.  I fight that which makes me unhappy.  My kids know that if they can get me to smile, even when I am at my maddest, I will just cave in and be happy.

I often think that when I hear Daria tell herself "to just be happy" I actually always am. 

I can be crabby - sure.  When I am bone-tired, struggling with unreasonable issues and generally faced with battering the walls of ignorance and incompetance I become a bit of a pill.  I can be mouthy.  I can be stern with the idiot adults.  Even worse I can tell people about their shortcomings - in the nicest of terms of course. 

But mostly I am happy, even in the most dire of circumstances.  I can always understand a perspective that gives rationality and calmness to a situation. 

I think my kids do as well as they do because we are happy.  There are rules and chores and expectations and blah, blah blah but we are happy. 

So I hate being such a sad sack that Alex is almost home four years and we still have hills to climb.  We are faced with things that should not even be there before us.

I do not want my son to learn that what harmed him so greatly in Russia is what he is expected to endure here where home is supposed to be safe.  If that is true, then what difference is there between here and there?  None as far as he can see.  And I see nothing different.

So I wish to be happy with everyone but it is not going so well.  I was once told by a very knowledgable person that we judge people by how we are ourselves.  So if you are a liar, cheater and "base deciever" (an Addams Family Gomez line) you expect everyone else is one too.

If you are an honest, forthright, and kind person you expect everyone else is too.  Worse yet, if you wake up happy every day, you expect everyone else does too.  In my house I make sure my kids wake up happy - every day.  That is one of the joys of childhood.  At least that is the way I learned it. 

And that is how my kids know it too. 

Being a cleft child is not easy - A new hill to climb

Unexpectedly lost our little Maltese today.  I rushed Precious to the emergency hospital, promised them anything and asked them to save our little one.  They tried, they really did.  I cried, comforted my mom and then took Alex to his speech therapy session.  Alex figured it out later but did not pepper me with questions because I was so generally teary.  What a little sweetie.  I fed my kids, watched a rerun of Sister Wives (being from the valley I kind of get their sense of family), and then all of us sat on the big couch and watched America's Next Top Model.  My kids got bored and played their leapsters - they just wanted to be close because they sensed I was sad.  Kids learn so many things from us.  Today they got a lesson in grief and how to be kind even when your heart is breaking. 

That is not the hill.  That is normal life and knowing wonderful beings either of the two-legged and/or four-legged variety that bring love into your life means that there will be a loss.  It does not lessen the joy that being brought to your every day.  And as they say, all dogs go to heaven.  I wish people like us had it so easy.

  In midst of everything, it became clear that Alex is yet facing more abuse at school.  Yesterday, a boy picked a fight with him, and after he became agitated, he was held by a teacher and this kid started punching him again.  IN THE FACE. 

IN THE FACE.  The teacher told me the kid was suspended and they were taking steps to deal with the issue.  Then today, I go to pick up Alex and he is being weird, not wanting to come near where the teachers are.  I didn't think much of it (after a long day at the dog emergency place) but then I see their daily report of his behavior.  Before I can even say anything  (got the call about the dog and put Alex into speech therapy so I wasn't really caring about the often vague report) Alex tells me the kid that beat him up yesterday was back in school today and punched him in the eye first thing this morning. 

omg.  I was there at the school and nobody told me.  All they said was "they had a day."  No wonder they didn't engage.  No wonder they threw Alex's backpack onto the porch while I was getting him off the top of the swing set.  No wonder they had shut the door to the trailer. 

I was a bit slow earlier.  It has been a hard day for me. 

But Alex identified the hill we need to take.  (Forgive me, my step-dad was a Marine and I was an officer in the Air Force so the military terms make some sense to me).  The hill I refer to is getting the school,or another, to be a safe place for Alex. 

A cleft kid should not have to be hit in the face everyday at school.  Given how horribly Alex was abused in Russia for being cleft, I feel doubly horrified.  And angry.  And enraged. 

How dare these people.  They refuse to listen to even the most basic information but they then turn around and allow Alex to experience what he did in Russia. 

Wow.  I thought my day was bad when I panicked and rushed my dog Precious to emergency.  I cannot believe I learned that I have basically allowed Alex to be targeted daily for being cleft. 

How do people protect their disabled children?  When I came home and engaged all the specialists, I thought my child would be safe.  I was wrong.

Good news and not so great news

Good news for Daria - no failure to grow issues.  I was really scared because there is a genetic deficiency condition which when failure to grow combines with cleft and a few other things, can mean pretty significant problems.  I was seriously worried.  But the tests came back in the normal range so she is just a tiny girl but no health concerns about it. 

The not so great news is that several different entities are testing Alex for delays, I.Q., etc.  Some of the early people on deck are giving out grave news and labels.  People in other camps such as the school are finding the conclusions and labels far off the mark.  What to do, what to do.  There are so many different angles with this kid. 

I will have to think about this some more. 

Lazy Day at Home

My kids humble me.  While waiting for dinner they begged for a carrot to chew after learning they were part of dinner and available.  Alex being Alex insisted on two. Hence the pictures.  Note the dog nose in the lower part of Alex's pictures.  His dog Boomer goes everywhere with him. 

It was sunny today so after a lazy day at home, I set up the Barbee and started fixing grilling delicacies.  Actaully, I got up early and worked most of the day on some work thing but the kids (and my mom) had a lazy day. The veggies were done first with the other delacies eventually being cooked.

The kids just ate everything in sight. Then there was jockeying for bath-time while I was baking cookies and Alex's favorite, bread-pudding. 

All the while I talked about what vegetables and outside herbs I could plant (maybe) this year.  I continue to want the three chickens our city allows.  My university did a study and a three chicken paradigm is optimal in a city situation. 



I grew up in the country (mostly Montana)  so I still struggle with matching my memories of what a childhood should have and what I do today for my kids.  I must be doing something right though - my kids demanded carrots to tide them over until dinner.  There were other options available.  And they both already had chocolate in their secret places of goodies so I was happy they insisted on chomping carrots.  I think I must be doing okay on giving my kids the awesome childhood I enjoyed.  I hope so.  My life as a kid was a wonderful place to be.  Even with my sisters.    I always knew I was loved and played so much.  And I was happy.  So very happy.  That is what I want to give my kids.  So even when Alex (and sometimes Daria)  exhibit the institutional and/or survival behavior they learned in thier "before life" - I just let it ride.  I refuse to let it seep into our family life.  It is slow but Alex has begun to believe.  His eyes when he interacts with me right now are so full of hurt expectation, I generally just want to fall to my knees and beg him to stop being so hurt.  I do not.  I would not speed up the healing process.  For him or me.  Daria does not yet believe. 

You can see it in her face of course in this picture.  Not only does she think I will tear that carrot from her hand but she has no expection I will remain in her life for her.  My daughter does not yet believe that her mother will let her eat.

I think this is a common view for children left without adequate family protection.  As I always say, time and love.  Time and love.

Back to tonight.  My mom particularly enjoyed the salmon I grilled for her.  Life is happy for our family.  We have sun.  We have each other.  My children, born with a facial anomolies, survived their "before time."  They are so amazing.  That carrot they insisted upon today was something they were not allowed before.  The people taking care of them in "the before time" would allow no solids for them.  My daughter still misses soups.  I generally do not like them and do not make them much.  I try more now simply because they bring her such joy.

That is what families do.  We love each other.  And we are there for each other. 

After all the scrambles for teeth brushing, baths, etc., I made chocolate chip cookies and a three fruit bread pudding (which Alex especially likes). 

All the kids sleep.  All the dogs sleep.  My mom sleeps.  Peace reigns. 

Life is good. 

Daria goes in next week for testing given her failure to grow.   She asked that Alex be there.  He has agreed. 

Alex will go into further reconstructive surgery in June.  He is not sure what he wants to get through that yet.  I am not sure what I will need either.  But we will endure - happily.   

We are a happy family.  God has blessed us all.