Tribes and Gangs

Posted on July 13, 2015 by Andy Chrestman

We thought of the name for this blog in a rare, “aha” moment of creativity.  Kohl loves music.  “Kool and the Gang” is a great band.  Why not pick “Kohl and the Gang?”

After quickly researching whether there were any copyright issues with this title, we were pleased to discover that the domain name was available.  We were even more pleased to learn, however, that our humble little blog would share the same name as a German, political satire TV show that aired in the 1990’s and used puppets to make fun of the latest German issues of the day.   That, in and of itself, is pretty awesome.

As time has gone by, however, the name “Kohl and the Gang” has taken on new meaning for us as we have discovered the importance of community as we go through this journey of parenting Kohl and Amelia.  As it turns out, the “gang” that Kohl has assembled in his three years on this Earth is among the things we value most.

This has a couple of meanings for us as Kohl’s gang comprises many different categories of people:

Family and Friends

It goes without saying that in times of difficulty, having a strong network of family and close friends is indispensable.  Having a traumatic experience like birthing a child with brain damage has a way of showing you who your true friends are.  We are extremely lucky to have learned how close and special our friends truly are.   Unfortunately, it seems all too common for an experience like this to destroy these kinds of relationships.  But we were lucky because the outpouring of support from our families and friends after Kohl’s birth still gives us goosebumps when we think about it today.

It must be our sparkling personalities, jovial dispositions and joi de vivre.

Joi de Vivre

Parents of special needs children

I hesitate to use the phrase “misery loves company” to describe the importance of connecting with other parents of special needs children because I don’t want to give the impression that raising special needs children is “misery.”  Sure, there are times when you feel like putting a sword in your chest, Samurai-style.  But having a child with special needs is an incredible journey of growth and never-ending lessons in which you learn what is truly important and what life is really all about.

And while all children come with different challenges, connecting with parents that are on similar journeys has been one of the most helpful things we have done.  Having a child with brain damage means having a child with countless issues and challenges.  That translates into an overwhelming amount of information on how to deal with those challenges.  So, information sharing with parents on similar paths is a great way to cut to the chase of what information is good and what is bad.

In addition to informally connecting with other parents of children who struggle with similar issues as Kohl over the years, we have also recently discovered an incredible organization called Hope for HIE.  This group was started by parents of children like Kohl who have brain damage caused by an abrupt lack of oxygen and blood to the brain.  The medical term for this is “hypoxic ischemic encephalopathy” or HIE, thus the name.   Through it, we have discovered a wealth of useful information, a common bond and new, meaningful friendships.

There tends to be an instant bond when you encounter another member of the “tribe” of special needs parents.

Parents of healthy children

But the fact that that this bond exists can have negative repercussions as well.  Within the world of special needs parents, there tends to be an “us versus them” mentality in which there  can be a negative view of parents who have been blessed with healthy children.  We have been guilty of it.  Rolled eyes when hearing what – to us – are trivial complaints about sicknesses or other routine issues that a healthy child might have.  Happiness with varying levels of jealousy mixed in when friends and family members celebrate new, healthy births or their children reach milestones that our child may never see.  We’re all human, and these emotions are almost impossible to not feel.

And while it’s okay to feel these emotions, if we let them consume us, it can create feelings of animosity towards parents of healthy children.  Nothing constructive can ever come of this.  Many of the laws that protect people with disabilities in this country are based on the principle of inclusion rather than alienation.  But what we do by having this “us versus them” mentality is alienating.

To any other special needs parents reading this, I’m not trying to be preachy because we are just as guilty of it.  This is, in part, a self-admonishment.  Putting it in print though, I think, helps us to avoid falling in this trap.

We have grown by leaps and bounds since Kohl’s birth, and I think our friends and families have as well.  Unless you have a child with special needs, it is impossible to ever fully understand what the experience is like.  But many of our friends, and most of the readers of this blog, have an incredible amount of empathy.

And this has truly been a beautiful thing.

 

 



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Book Review: Waiting for Eli

Posted on June 27, 2015 by Andy Chrestman

In Waiting for Eli, Chad Judice tells the story of the journey he undertook after hearing that the child that his wife was pregnant with would have a serious birth defect, specifically, spina bifida.  The book chronicles the family’s experiences – through a dad’s eyes – of what that was like.  I was drawn to the book for two reasons.

First, you do not often get to hear a father’s perspective on experiences like this.  Men are usually expected to be strong and silent and be in the background while women tend to be more open to describing how they process experiences like this emotionally.  I often joke with Sarah how much better she is at “talking about feelings” than me.  But painting a very small picture of what it has been like raising a child born with brain damage on this blog has been – for me – a cathartic experience.  And I am truly humbled that people continue to listen to me flap my gums here.

The other reason I was interested in the book was geography. The author lives in Lafayette, Louisiana which is a cool little city about two-and-a-half hours west of New Orleans.  So, I was curious to see how a fellow Louisianian has processed an experience similar to mine.

What worked for me

Several of the emotions he experienced were similar to what I experienced – shock, loss of control, being humbled by an outpouring of support, and the power of prayer.  He admits, early on, that he had a lot of difficulty coping with situations that he cannot control.  This resonated with me, as I can distinctly recall sitting in the waiting room at Children’s Hospital the day after Kohl was born just minutes after getting the devastating news that he had sustained massive brain damage.  The shock of the initial 24 hours was beginning to wear off, and a feeling of deep despair was creeping its way in as I realized that this situation was, very much, out of my control.

I also admire his faith and his optimistic attitude, which is something I strive to have every day.  There was a dialogue in the book between the author and one of his colleagues in which he was opening up about how the thought that his child may die in the womb or live a less-than-normal life never leaves his mind.  Her suggestion to him was to live one day at a time, because he may not be here tomorrow.  That is simple advice, but it’s easy to forget.

There was also a part in which he had just gotten some statistics from a physician on the kind of life he could expect his son to have.  His response was essentially to forget the statistics.  His child was not a statistic and only God knows what his limitations will be.  This is also another simple maxim, but one that is easy to forget.  Parents of children with medical conditions can sometimes fall prey to believing that whatever a doctor says is gospel.  The fact that doctors are human too and that they are frequently wrong and see things from a very limited perspective is something to always keep in the back of your head.

What didn’t work for me

The first issue I had with the book is that the challenges the author’s son faces are so vastly different than what Kohl faces that it made it a little difficult to relate to.  In the book, his son was assessed to be neurologically normal, while Kohl has global brain damage and has a host of neurological issues.   In no way do I want to demean or make light of the immense challenges that parents with other disabilities outside of the brain damage realm face.  But neurological damage introduces a whole host of other challenges for a family, and for that reason, I could not relate totally with what this family was going through.

For me to publicly discuss this was a bit of a gamble because it has the potential to be taken the wrong way.  The fact is that there are some kids with disabilities far less severe and far more severe than Kohl’s.  For me to judge a parent’s reaction to their child’s disabilities and think “well you have it better than we do because at least your child doesn’t have to deal with X, Y, or Z” does nothing more than invalidate what that parent is going through with their child, and that is neither constructive nor fair to that parent.  I only bring this up to say that various disabilities bring various kinds of challenges to the child afflicted with those disabilities and their parents who love them.  And to the extent that I decided to read this book, in part, to find some common ground, this was the part that fell a bit short for me.  That is all.

The other issue I had with the book is that the author and I have differing views on religion.  It is very clear, early on, that the author is a devout Catholic, and that religion was clearly a part of his life well before the issues with his son.  As a result, his faith was an immediate source of comfort and strength for he and his family.  I truly do admire his faith and strength, but I just could not completely relate to it.  I am a Christian, but I certainly have my issues with Christianity and Catholocism, and I would not consider organized religion to be a substantial source of comfort or strength for me or my family.  I don’t say that to demean the author’s faith in any way, but there are simply different strokes for different folks.  And while I am convinced that there is a higher power at work in our lives that is influencing things with Kohl, and I do believe in the power of prayer, the frequency with which the author relied on various aspects of organized religion as his source of comfort made it difficult for this book to truly resonate with me.

Conclusion

If you (1) love a young child with medical issues who is just starting out on his or her journey and (2) you are a devout Christian (especially Catholic), you will get a lot out of this book.  If you are not a Christian or if you have no use for organized religion, this book is not for you.  I know plenty of other parents of children with special needs who still harbor a great deal of resentment at the very idea of religion as a source of strength or even a positive thing in their lives.  To those in that category, I would recommend steering clear.  But for those, like me, who fall somewhere in the middle of the spectrum of devout Christianity on one end and atheism on the other, will, I think, derive some value from this book.

 

 



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Initial Impressions of the Anat Baniel Method

Posted on June 21, 2015 by Andy Chrestman

ABMIt has now been a little over two weeks since we returned from California.  Aside from frequently dining at In-N-Out Burger, taking advantage of the nightly happy hour at our hotel, and numerous California jokes about gluten, trans fats and rollerblading (all of which receiving a chilly reception), we were there for an intensive two week introduction to the Anat Baniel Method (ABM).

The first week consisted of Kohl receiving two “lessons” a day, and the second week was a seminar specifically for parents of kids with special needs.  It was a long trip out west, and Kohl had difficulties adjusting at first.  But the practitioners quickly figured out how to incorporate Kohl’s unusual affinity for 90s rock into his lessons, and the first week ended up very well.  He is already sitting up straighter and making better eye contact.  The changes are very subtle and small, but small changes, over time, will add up to something significant.

The second week was a seminar for parents of kids with special needs in which Kohl and the other kids got lessons first thing in the morning, then there were sessions for the parents for the first half of the seminar, and then the last half of the day was parents only.

By the time the second week rolled around, however, Kohl decided that he was done.  He wanted no part of even going to the facility where the seminar took place.  He made it very clear that he wanted to stay in the hotel and listen to “The Cure” rather than go through with the sessions.  Throughout the duration of the second week, I couldn’t help but to imagine every single one of the thousands of dollars that we spent on the seminar going into a fictional trash can.  It was very frustrating

But now that we have had some time to let things soak in, I realize that Kohl’s brain had probably never gotten so much stimulation, and it was probably worn out by the time the second week rolled around.

Also, the parts of the seminar that we did get to attend were helpful, and getting the chance to spend some time with other parents with kids that have similar issues to Kohl was invaluable.

So, in all, it was a great trip to California.

Here are three of our initial impressions of ABM:

Brain plasticity

ABM is a system, based on principles called “The Nine Essentials,” that use various kinds of movements to facilitate better organization of neural connections in the brain.  Yes, it sounds “New Age-y.”  Yes, we were skeptical going in.  But while I have certainly not ruled out pursuing other forms of alternative forms of therapy for Kohl, I am currently of the opinion that this system may open up a world of possibilities for Kohl.

The entire method is based on the concept of brain plasticity, which means that the brain has the capability to reorganize itself and accomplish various things despite the existence of damage.  This is something that makes parents like us very optimistic.  And the most exciting part is that we are only beginning to understand the concept of brain plasticity and the implications it holds for children like Kohl.

My favorite part of the seminar was when a leading researcher in brain plasticity came to give us a talk.  The main takeaway from his discussion was that we are merely on the cusp of what the human brain is capable of, which gives us very real reasons for hope.

It is non-traditional

One thing I like about the ABM philosophy is that it seeks to meet the child where they are.  Instead of trying to force them into various movements that they cannot currently do, ABM focuses on what the child CAN do.

In Kohl’s case, where traditional therapy involves putting him in a harness to practice walking or putting him in his stander, we did none of those things in California.  It involved a lot of slower, more subtle movements to his lower back, pelvis and hips – often while laying down.  What was fascinating was that this, in turn, helped him sit up straighter.  This seems to be in line with the ABM concept that the movements they incorporate establish new networks of neural pathways that build on one another to eventually allow a child to perform some kind of movement.

I’m still of the opinion, however, that traditional therapy has its place. The most avid of ABM supporters will go so far as to say that traditional therapy is harmful to your child because practicing movements that the child cannot do results in what are called “patterns of failure.”  In other words, forcing the child to continue to do something they cannot do results in making those patterns of not being able to do the particular movement to become more deeply grooved into the brain.

This does make sense, but Kohl has and, we believe, will continue to benefit from some aspects of traditional therapy.  In Kohl’s case, he wears Ankle Foot Orthotics (AFO’s) and spends time in a stander.  This is done, not necessarily to teach him how to stand or walk, but to prevent abnormal growth of the muscles, tendons and ligaments in his hips, ankles and feet which is a risk with children that do not walk or bear weight on their feet.  That said, we’re not going to dispense with traditional therapy or some of the bracing he wears because they are helping him, and we have some incredible therapists.

Connecting with your child

Perhaps the most enlightening part of ABM was the complete change in perspective.  Accepting the ABM philosophy as a means to help your child develop involves a complete change in approach that goes against our natural tendencies

There is a chapter in Anat Baniel’s book,Kids Beyond Limits, called “From Fixing to Connecting.”  It is one of the earlier chapters that explains the basis behind the entire method and how it requires you to stop trying to “fix” all of your child’s problems.  The brain is the control system for your entire life, so when it sustains global damage, there are a laundry list of problems – cerebral palsy, cortical visual impairment, seizures, physical limitations, cognitive issues, etc.  As a parent, you attempt to figure out how to make your child live the fullest life possible despite their limitations, so the natural tendency is to fix these problems.

Indeed, traditional therapies seek to attack these issues head on.  If your child can’t sit up unassisted, the therapy sessions consist of helping him to sit up.  If he can’t grasp a toy, you help him grasp a toy.

But since the starting point of ABM is what your child can do, the focus is on connecting with your child, figuring out what they can do and what they are trying to convey and goes from there. It goes with the flow.  It meets your child where he is.

For me, this was very profound.  A lot of the stress that special needs parents face involves how to “fix” your child’s problems.  At the end of each day, there is a constant anxiety that lurks beneath the surface that causes you to question whether you are doing enough to help your child with their mobility issues, their feeding issues, their cognitive issues, etc.  The list goes on and on, and it can all be very overwhelming.

But meeting your child where they are and connecting with them, and being with them in the moment doesn’t just make for a much less stressful, fuller experience with your child, it actually helps them develop.

There is a part in the book that recommends just taking 10 minutes a day to just “be” with your child.  I have tried this, and it is an enormous relief.  Those ten minutes are precious. During those ten minutes, I don’t worry about whether Kohl will ever walk or talk.  Whether he will ever live a productive life.  I’m just with my son in the moment.

Even if Kohl does not benefit at all from ABM, learning how to connect more deeply with my child was more than worth the price of admission.

 



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Posted in Anat Baniel Method, Therapies | 14 Comments