Cerebral Palsy- It just is.... Part 2

In some ways, this post is easier for me to write.  The first part was very factual and I wanted to make sure all of my information was correct.  I stressed out about double checking my sources to make sure it was right.  It took a lot of time.  But in other ways, this post is way harder for me to write.  Because this part is more personal.  I am an honest person.  Sometimes too honest.  And I don't exaggerate.  If I say something is easy, it's easy.  If I say it's hard, you can believe it is.  Being honest about something so new and so personal, when it's wrapped up in a package of a brand new, vulnerable, welcome-to-life six year old is hard, because my emotions are RIGHT THERE.  For him, for the changes to our family, for how this is affecting all of us.  Here is my best shot. 

Question: How has CP affected you?

Answer: Tough question.  Because I can't really pinpoint the moment CP started to affect me.  CP just happened.  As parents, we usually don't choose our children.  Our children are each a unique package of strengths and weaknesses that somehow mesh into our family in a blend of perfectness.  Seth is six, and we did choose him, but the process was basically the same.  One day, I just looked at him and he was one of us, CP and all.  I never really made the decision to allow CP to affect me or not affect me.  It's just what it is, part of his package.  No different, really, than if he were strong willed, obedient, talkative, or stubborn. 

That being said, cerebral palsy can be inconvenient.  It requires me to slow down.  It demands patience, something I am not always good at.  Cerebral palsy means walkers, wheelchairs, countless doctors appts and therapy appts and AFO's.  It requires at least two daily routines of stretching to keep his muscles stretched out.  It means daily medicine to help with spasticity.  It means helping him on and off the potty, in and out of the shower, helping him get dressed, lifting him in and out of the car.  Cerebral palsy can be inconvenient, but let's face it.... all children are occasionally inconvenient.  Some are demanding, defiant, obstinate or mouthy.  Seth is none of those things.  Seth's needs are not greater.  They are just different. 

Question: What did you expect when you brought him home?

Answer:  Another moment of truth, because this shows my complete naivete towards orphanages in EE, but when we went to Ukraine to adopt a 6 year old with CP, I fully expected to come home with a fairly typical 4 year old who couldn't walk.  Little did I know. 

Question: How are those expectations different from the reality?

Answer:  Physically, Seth is about what we expected.  Thanks to several people who had met him, we knew what we were signing up for. We knew he could pull to a stand.  We knew he could sit up unassisted.  We hoped he could crawl and were happy to learn he was able to.  Seth is strong, determined and motivated.  He is also very active.  I didn't expect that, but I love it.  He does most anything any other little boy does.  He just finds different ways to do some of them.

What makes this challenging is not his CP, but his institutionalization, and how his lack of previous care has affected him.  I wish he had been born into our family and had gotten the care, education, love and therapy he needed from the beginning.  If he had, he'd be a typical 6 year old boy who could walk with assistance.  Or maybe even unaided.  He'll get there.  He just took the long way.

Question: What does Seth's typical week looks like, to include therapy appts, doc appts, medicine, home therapy, etc?

Answer:  Seth currently has two PT and two OT appts every week.  He will start speech therapy as soon as he's ready, and they're also talking about adding in water therapy.  In addition, he has occasional neurology appts, ped appts, ophthalmology appts, and orthotic appts.  He is on one medication, called baclofen, to help reduce the tightness in his muscles.  We stretch him twice a day, morning and night, to give him greater range of motion.  Add in all the things he still needs physical help with and his schedule is.... a lot. 

This is a pic of my planner for the month of February.  All highlighted sections are doc appts or therapy sessions, mostly for Seth.  On the days where you see two or three different highlighted items, those are days when we have two or three different appts.  Not uncommon.  We knew this going into it though.  We knew the first year would be tough.  Our goal is to have him as independent and caught up as possible before he starts school in the fall.  This is what it takes.  But it will get easier.  This is not as much about CP as it is about 6 years of neglect. 

Question: What are Seth's lifestyle limitations?

Answer:  This is a difficult question to answer because as of right now, we're not completely certain what's CP and what's orphanage delays.  Meaning what is a somewhat permanent part of his life and what is just due to him never having been allowed to develop skills.  He is learning how to use the toilet independently.  He's almost mastered feeding himself.  He needs help getting dressed, but he assists us by pushing his arms, legs and head through.  He is not talking much, but that is to be expected with a language change.  He says a new word every few days, but still isn't using them consistently in every day language.  We don't know how much better that will get and if it's a result of his CP, but we are working on sign language to back it up, just in case.  We know his receptive language is a lot better than his verbal, which is also to be expected. 

He is now able to self propel his own wheelchair and gait trainer, which gives him a lot of mobility options.  I doubt he'll be a quarterback on a typical football team or center on the basketball team but he can one day do wheelchair basketball, and will likely be one heck of a swimmer.  And he's strong.  Maybe a weight lifter.  I don't really see him in terms of limitations.  It's about adaptations.  He can accomplish anything.  We will have to think outside of that box to help him achieve it.  Kids with CP can do anything any other child can do.  They just may have to go about it a little differently.

Question: What are my insights on CP, as a caregiver?

Answer:  I guess I never have really thought about this.  CP just is.  We chose this.  It didn't come as a surprise.  It's easier than I expected in some ways.  He's a sweet little boy who needed a family.  A regular little kid who can't yet walk.  He's got a killer smile and an amazing spirit that has overcome so much.  CP sometimes makes my life tough.  But this isn't about me.  I have a boy who survived 6 horrible years in a crib.  I can't whine.  If you ask Seth what has set him back the most, it won't be his CP.  Since coming home, we have watched this boy come to life.  He has persevered.  He has overcome.  CP is part of who he is.  Love him, love CP.  It's part of his package.  It's no bigger or no less than having a child who struggles in school, finds it hard to make friends, or can't concentrate on their homework.  It's not harder.  It's not more.  It just is. 

If I could trade anything about Seth, there's not a thing I would change.  Honestly.  I would not trade off his CP.  Because I love him.  I love every square inch of him, and a large part of who he is, is developed because of the hardships he's had to endure.  To take away CP would be to change his character,

his patience,

his determination and perseverance,

his amazement for all that's around him, his humility.

Who wouldn't want a child with a little more of those qualities? 

Our trials make us strong.  They turn us into who we are.  I love who he is. CP and all. 

Cerebral Palsy, Part 1- What it is/ What it isn't

In three and a half short months, cerebral Palsy has become a way of life for us.  For us, it came in the form of a cute little six year old boy from Ukraine, peering out at us from a picture on Reece's Rainbow, an advocacy website for orphans with special needs.  We saw a boy with big beautiful blue eyes and an impish little grin.  A little boy.  We had already fallen in love with him before we got to the part that said "cerebral palsy" and "doesn't yet walk".  We knew he was ours before we considered how this might impact our family.  And that's a good thing.  Because if I had had the opportunity to think too much, I might have tried to talk myself out of it.  I might have worried it would be too hard, too much of a sacrifice to our kids.  I might have worried that I didn't know enough, didn't have enough expertise to handle this, had too busy a family.  To us, he was just a boy who needed something we could give- a family. And we needed something he could give- a chance to look outside ourselves and do something incredibly meaningful and life saving for a child.  We researched CP and learned as much as we could, prepared all that we could, and left the rest up to God, knowing that He wouldn't ask us to do it if He weren't going to give us what we needed to do the job.  Some things have been easier than we expected.  Some have been harder.  Some I never even really considered until I had a non walking six year old child in my house. 

I talked to people and read tons of articles and websites, collecting information on cerebral palsy.  And quite honestly, it was very frustrating.  Here's why: cerebral palsy is highly individualized.  It affects every person who has it in a different way, and every person will respond to treatments differently.  So researching before we left was difficult, because we didn't know much about him.  However, we learned some general facts about cerebral palsy, and I want to share those.

Cerebral palsy is described primarily as a loss or impairment of motor function.  It is caused by brain damage. The brain damage is caused by brain injury or abnormal development of the brain that occurs while a child’s brain is still developing — before birth, during birth, or immediately after birth.  Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oromotor functioning.  It can affect every one of these areas....  or it can affect only one, minimally. 

Question: What causes CP? What specific "birth injuries" cause/ contribute to CP?  What are the various degrees? 

Answer: Those with cerebral palsy were most likely born with the condition, although some acquire it later. It was once thought that cerebral palsy was caused by complications during birth. While this does happen, it is now widely agreed that birthing complications account for only a small percentage, an estimated 10 percent, of cerebral palsy cases. Current research suggests the majority of cerebral palsy cases result from abnormal brain development or brain injury prior to birth or during labor and delivery. Accidents, abuse, medical malpractice, negligence, infections, and injury are some known risk factors that may lead to cerebral palsy.

An individual with cerebral palsy will likely show signs of physical impairment. However, the type of movement disorder, the location and number of limbs involved, as well as the extent of impairment, will vary from one individual to another. It can affect arms, legs, and even the face; it can affect one limb, several, or all.  Cerebral palsy is a brain injury, not a muscle injury.  Cerebral palsy affects muscles and a person’s ability to control them because the injured brain misfires signals to the muscles. Muscles can contract too much, too little, or all at the same time, all signals sent from the brain. Limbs can be stiff and forced into painful, awkward positions. Balance, posture, and coordination can also be affected by cerebral palsy. Tasks such as walking, sitting, or tying shoes may be difficult for some, while others might have difficulty grasping objects.  Some people with cerebral palsy have total paralysis and need constant care.  Others walk with a slight limp and lead very independent lives. 

Question: Will people with CP lose their ability to walk as they age?

Answer: Some people will CP will lose their ability to walk as they age.  In fact, it's likely.  However, so will some people who do not have CP.  Aging stinks.  CP will probably complicate aging, but it's still manageable.  I know many older people using walkers and wheelchairs and none have CP.  Did I mention that aging stinks? 

Question: What are some ways to help others understand better, who perceive my child as less intelligent or just "less" because he has cerebral palsy and he may look and act a little different?  How do you educate others?

Answer:  Every day provides an opportunity to educate.  Every trip to the grocery store is a teaching moment.  Talk, share, blog, advocate.  Children with CP are very capable, very determined and very motivated.  They want the same thing every other child wants.  And they will work fifty times harder to get it.  One half of people with CP have no intellectual impairment whatsoever.  Another fourth have only very mild impairment and are still very able to live independently, with minimal support.  CP rarely affects a child cognitively to a degree that they cannot go on to live an independent life.  Our children are our best visual aides.  As we let them be strong and vocal and independent, we teach at every turn. 

Question: I have read that CP is not progressive, but then I read that muscles tighten if you don't work them and that there are future problems that didn't exist before.  Can you explain?

Answer: Cerebral palsy is non-progressive . That is to say, the brain lesion is the result of a one-time brain injury and will not produce further degeneration of the brain.  However, failure to take care of the muscles can lead to tightening, loss of muscle range and discomfort.  Stretches are a daily part of life with CP.  And just as with any other person, age brings challenges to our bodies. Those challenges are not really caused by CP, but the fact that they have CP could complicate other health issues. 

Stay tuned for Part 2:

*how CP has affected me
* what did I expect when we brought him home
*how those expectations are different from the reality
* what Seth's typical week looks like, to include therapy appts, doc appts, medicine, home therapy, etc.
* what Seth's lifestyle limitations are
* my insights on CP, as a caregiver

And Part 3:
* how therapy can improve life
* other treatment opportunities
* what living environment is best for a child with CP
* how to know where to start if you have a child with CP
* what genetic factors influence CP
* any associated conditions

But first, a couple cute picture of my very cute little boy, doing what all boys like to do, just a bit differently:

I am not the type of parent who limits my child.  I don't do that with my other children and I won't do it to Seth.  Seth can do anything he sets his mind to.  We just may have to be creative in how he accomplishes it.  As his parents, that's our job.  I don't want Seth to grow up thinking about what he can't do.  I will raise him to know he can do anything, and then, together, we will figure out ways to make that happen.  I see him on high adventures, hiking, rock climbing, rappelling, playing sports.  Why not?  Who says he can't? 

Seth kinda digs water.  For a while, he was happy in the bathtub, but then, he discovered the shower.  And that is WAY better.  Rather than thinking this inconvenient or different and telling him to take a bath, we figured out a way to make it work.  It wasn't hard.  And it made him smile.  Thinking outside the box.  It happens every day for families who have children with cerebral palsy.   He will always be an "outside of the box" kind of kid.  And that's okay.  Because I don't like boxes anyway. 

Cannot get over it!

Cerebral Palsy post coming soon, but first... This week, SEVEN people have said the same thing when looking at "before" and "after" pics of Seth:  I just simply can't get over the change!  Is that really the same little boy?

Seth, September 16, 2011, in Ukraine.  Our first visit:

 Seth, today, 148 days later and home three and a half months:

Is that child up above, the one who wouldn't look me in the eye, even the same child as the one in the Dr Seuss hat?  It is.  Unbelievable things are happening in our home.  A little boy who was losing a battle has gained his life back again.  Seth is such an amazing and happy boy.  What a beautiful blessing he is in our family.  We are celebrating miracles.  We are celebrating the blessings of a family.

Our three month miracle:

Seth, the day we met him, Sept 16, 2011. 

On Gotcha Day, Oct 22, five weeks later, in our apartment in Chernivsti:

Seth, this week, three month's home:

This boy is pure joy!

Once in while, God lets us watch a miracle unfold.  He allows us to be a part of it.  This is Seth's miracle. 

Happy three months home, baby boy!  You have changed our family forever.  We are so happy you are ours!  You couldn't be more loved.

My boy is a walker!!

When we met Seth at the institution in September, he seemed eager to show us how much he could do.  While he wasn't walking, he was crawling and pulling up on furniture.  His director told us he thought he could walk, with therapy.  When we went to his baby house, the director told us that Seth is motivated and wants to walk "like the other children".  And in fact, since we've come home, Seth has met and exceeded every goal in our mind.  Seth is one busy boy!  He gets around.  He just does it a little differently than our other children. 

Three weeks ago at Shriners Hospital, Seth tried out the gait trainer for the first time.  Unbeknownst to me, learning to walk is actually quite a complicated process.  We all learn to do it and take it for granted.  But Seth is just learning to take the steps.  Seth has two PT's and they work together to strengthen him, give him confidence in himself and teach him to take steps.  Once that is accomplished, he needs to learn that he can push the gait trainer forward AND take steps.  Then, he'll need to learn to support his weight, push the gait trainer forward AND take steps.  He'll also need to learn to balance while taking steps.  That's a lot to learn, but Seth is on his way to walking.

Here is Seth, today:

Step 1 of a rather lengthy process towards independence.  His day will come.  I believe it will.  Because I don't think Seth will have it any other way.  And determination and motivation are 9/10ths of the battle.  But for now, the big news is, he is walking!  A little boy, who two and a half months ago, was strapped into a wheelchair, is now learning to take his first steps.  I love Shriners motto "Helping Kids Defy the Odds".  A little boy who is defying every one of the odds placed before him.  That's my boy! 

Want to see what two and a half months will do for a pair of feet?

As far as feet go, Seth has some pretty cute ones!!

When we arrived in Ukraine, Seth had been in a wheelchair for three and a half months straight.  Seth had not had any kind of therapy or stretches since he'd been transferred.  No one had taken care of those cute little feet.  Seth's feet were so tight, I could not get them to flex, even pushing as hard as I dared.

These are pics of Seth's feet while we were in Ukraine.  Notice that his foot was so tight that it pulled downward.  We couldn't even get a pair of shoes to stay on him.  Caregivers could, however, get four pair of socks to stay on!!!  :)   

Here's his foot from a top angle.  He was not able to stand flat footed.  He was at a ballerina point ALL. THE. TIME! 

After two and a half months of stretching, AFO's and therapy, look at what we have!

This is his foot, off the ground:

And flat footed:

After two and a half months!!  That, my friends, is a miracle! 

That's what good medical care and lots of love will do for a little boy! 

In our house, we are celebrating his little successes and his big successes.  This is a BIG success!  This is when we realize we've made a difference in one little boy's life. 

Educational Matters

Seth had his first IEP assessment yesterday.  It was very informal.  Not an official placement.  Just more of a "lets get to know you and see what we have going on".  Seth and I sat at a table with no less than ten educators from our district.  It was a little overwhelming, but also heartwarming that so many cared and were being pulled in to tackle the issues of his delays.  We had the district gen ed supervisor, the district Special ed supervisor, an interpreter for Seth, and EDL liaison, the kindergarten teacher, and a nurse, just to name a few. 

Of all the elements of Seth that has concerned me and of all the decisions we have to make, his education has been the most stressful.  He is 6, going on 7 this spring, and he has never sat in a classroom setting.  He should be in 1st grade.  He doesn't know shapes, colors, numbers or letters in Russian, let alone English.  Compound that with where he is developmentally and it is worrisome.  Making the right decision for him is crucial to his success.  He is re learning potty training and learning to feed himself, how to function in a family.  Those are big tasks, on their own.  But he also has therapy three times a week and is about ready to start speech therapy, adding another day.  That's a lot of therapy.  Starting school too is enormous.  That's a lot for any six year old, but for one who, two and a half months ago, was parked in a wheelchair in the corner of an institution, it is potentially massively overwhelming. 

So I went into this meeting with a certain amount of trepidation.  I knew what I wanted, and because I'm the parent, I knew what I'd ultimately get.  I knew that what I was asking was reasonable.  What I wasn't sure on is whether they'd agree that it was in his best interest and because they are the educators and we've only had Seth a short time, their opinion mattered to me. They started off with wanting to start him pretty quickly in a mainstream kindergarten class, part time, keeping an eye on him and evaluating him for 35 days.  If he was making progress, they'd feel good keeping him there, realizing he'll need support for several years.  If he was struggling, we'd look at a self contained special ed class.  I told them if he was going to be in a mainstream class, he absolutely had to have a paraprofessional and I saw the kindergarten teacher visibly give a sigh of relief that I had thought to ask, because it's not just for Seth.  It's also for her.  lol  I was surprised that they didn't even blink.  Usually getting a para is very difficult because it's expensive.  I was pleased that they realized this was a necessity to his success.  Honestly, I was fairly pleased with this option, except I have this nagging feeling that he really is not emotionally ready to handle being away from us in a classroom setting, even on a part time basis.  I have no way to really explain "school" to him and he has no concept of it.  He has enough going on, and while the kindergarten teacher is amazingly phenomenal, I personally think he's better served for now, here at home with me and his brothers.  So I pitched my plan.

I asked them to check the compulsory age for education (which I knew).  They scrambled a bit to find it and for a child who has not been enrolled, it's 8 years old.  So I can keep him home without officially "homeschooling" him, until he's 8.  Once they realized that, a huge weight was lifted off everyones shoulders.  You could feel it.  They knew as well as me that this is a child who is simply not emotionally ready for that type of structured learning.  Not outside of our home.  Not yet. I asked them what they thought of me keeping him home til fall.  They seemed a little surprised. Pleasantly so.  We talked about where he is, in all aspects, and the progress we see in him in such a short time, and that I really believe sending him to school now would be detrimental to his growth, overall, but that if we waited, he could succeed in the fall.

So we came to an agreement.  He will stay home til fall and be enrolled then as a mainstream 1st grader (one year behind), with a para and full services (PT, OT and Speech).  We are still working out the logistics, but at least now, we have til fall to work out what is best for Seth, and what Seth needs will change dramatically between now and September.  He's changing every week.  He will be a very different little boy by next fall, well on his way to being healthy in every way and being ready and receptive to learning.  By waiting, he will have firmer understanding of the language, I will be able to explain to him what school is and what's going on, and behavior expectations, he'll be potty trained again, he'll be able to feed himself, he'll be better bonded in our family and he'll be happier and more secure.  Also, his little brother Noah will be right down the hall in the kindergarten room. 

I cannot tell you what an immense relief this was to have them agree with me that this was in his best interest, rather than have them rushing in to "solve" the problem.  I was relieved that they were able to see "the whole boy" and not just the lack of education.  I have a new respect for their compassion.  I knew as his mom, I had the right to do whatever I felt was best for him, but to have their backup was a big confidence booster that even though this child is new to us and this situation is new to us, my instincts as his mother are spot on. 

What I can offer to other parents walking this walk is to come to that meeting knowing your stuff. Know the language. Visit the district office.  Go to the website.  Have your options well thought out. Know an IEP from a 504 and what services are legally yours to request.  Know the role of a para.  Know what mainstreaming with resources is.  Know what a self contained classroom is.  Understand where that fits in and where it does not.  Visit a self contained classroom.  Get to know the teacher.  See how that fits and feels.  Do all the research before you try to advocate for your child.  Being able to talk their language solidified my spot as a competent decision maker for Seth.  It also greatly reduced the length of time the meeting took because I knew what they were talking about and they didn't have to stop and explain everything to me.  Do. Your. Homework. and then advocate like crazy.