Tuesday, January 28, 2014

Striking Out Medically

In baseball, it's three strikes and you're out.  In the legal system in many states, it's three strikes and you're out.  When it comes to experimenting with Attention Deficit Disorder (ADD) medicines and our son's body, it will definitely be three strikes and you're out.  Tonight we started our son on a new ADD medicine.  I'm praying it does what it is intended to do without the negative side effects we have experienced with the two previous ADD medicines. 


Coming to the decision to start our son on ADD medicines is not something we took lightly or casually.  If you have read my posts in the past, or you know us personally, you know that my education and work background is in behavior management.  For years, I told the neurology team that we wouldn't even consider medication.  We would address our sons behaviors and our concerns through behavior management and diet.  When things started getting more difficult and more challenging, I read and studied and researched.  I talked to other people living through what we were experiencing, his teaching team, and his therapists.  In general, I made a nuisance of myself, demanding that everyone do all that they could for my child without the benefit of medication.  I was self righteous in my desire to stay medication free.  It was my badge of honor that we were doing it by ourselves without medical intervention.


On the other hand, our son had an increasingly difficult time controlling his impulsiveness.  He struggled to bring his energy level down to an appropriate level once over stimulated without an explosion to release the pent up energy.  On top of that, his tendency to fixate inappropriately on ideas, behaviors, or objects seemed to be increasing.  The combination of these behavioral tendencies was resulting in some pretty unsafe episodes that resulted in some real close calls when it came to his physical safety.  It was also having an impact on his learning and his ability to learn.  It was also having an impact on our family and our marriage.


The first two medicines that the neurology team tried were from the old tried and true stimulant family.  They have the longest track record of use, with the most research backing their effectiveness.  I know because I read, researched, and questioned until I was sure that they were a viable option.  It was a logical place to start.  Unfortunately, they only increased our son's tendency to fixate and his natural intensity.  Our happy go lucky, love the world son began to show aggressive tendencies and angry outbursts that were not normal for him.  His rain man, fixated behaviors seemed to amplify.  He also seemed to be dropping a lot of weight.  All told, he lost over ten pounds over the last month or two.  In addition to these negative behavioral and physical side effects, the school was not seeing the desired increase in focus and productivity in school that they were hoping for.  The call was made to take him off the medicines.


For the last two weeks, our son has been medicine free.  He is a whirling swirling ping pong ball in a hurricane.  He has torn the house apart as he bounces from one activity or idea or object to another.  The idea of him completing a task or cleaning up after himself is laughable.  It has been exhausting.  It has also been enlightening.  He has (for the most part) reverted to his old happy go lucky self.  (Okay.  Homework time is still a nightmare but isn't that normal for a lot of kids?)  He is now eating CONSTANTLY.  I hadn't realized how little he was eating until he regained his normal appetite.  Sitting back (probably because I'm too tired to do anything else), it makes me very sad. It hurts to know how much he was changed by the chemicals in his body.  It hurts to know that we risked the judgment and sensor of the "chemical free" parent crowd without the benefit of positive change.  It hurts to know that we once again tried to make a change for the better for our son without the ability to effectively help him.  Sometimes, it feels like we are beating our heads against the wall. 


So tonight, we took our final leap of faith.  We started him on another (and his last) ADD medicine.  It is a non-stimulant called Tenex.  He will take it at bedtime for four days since the primary side effect is sedation.  (It's a sign that I'm a bad mother that when they told me that I actually smiled and thought "wouldn't that be nice."  Just kidding.  Sort of.)  This weekend, he will switch to a morning and after school dosage time frame.  We are all praying that it has the desired effect.  I am keeping an open mind.  Barring any significantly negative side effects, I am committing to at least a month or two to gauge it's effectiveness. I'm tuning out the negative voices in my head that tell me I'm a bad mother because I wasn't strong enough to make a difference for my son without medication.  I will continue to read about dietary changes and behavior plans that may be beneficial if this current (and final) medicine doesn't work out.  I will also continue to pray every single day that the Lord has a plan in mind for my little man; that he has him wrapped in His love; and guides us to make the choices that need to be made, even when they take us down paths that we would rather not travel.  Please Lord watch over our boy and guide us. 

Friday, January 17, 2014

Finding a Medical Baseline

If you've read my posts in the past, you know that after years of putting off the medicine option for our youngest son, we broke down and decided to go that route.  It has not been going smoothly.  We have now tried both families of the stimulant group of medicines.  His teachers noticed little change at the bottom end of the dosage spectrum.  Each time we have increased these bottom end dosages by only one or two increments, we have experienced some pretty negative side effects.  Those side effects have resulted in a removal from the current medicine and a new consultation to evaluate our options.  At the last appointment, they stated that if he doesn't do well with this current medication, we will need to re-evaluate and move to a completely different family of medicines.  It looks like that's what we are going to be doing.


The stimulants seem to be doing the opposite of what they should be doing.  In a child with Attention Deficit Disorder (ADD), they can have a sedative like effect that helps to slow the brain down to allow for better processing and a reduction in impulsiveness.  According to his teachers, they have been experiencing an increase in his chattiness; impulsive desire to be up and moving and out of his seat; and hyper awareness of everything going on around him.  Because his current medicine is a 30/70 release dosage, they should see increased focus and decreased impulsiveness as the school day progresses.  This medicine releases 30% of its dosage immediately.  The remaining 70% of the dosage is released throughout the day.  This should translate into decreased impulsiveness and increased focus as the school day progresses.  According to the feedback from his teaching team, the opposite is occurring. 


In the evenings, we have been experiencing what they refer to as "rebound behaviors".  As the evenings progress and the medicine begins to withdraw from his system, he becomes very intense and edgy.  His tendency to fixate on conversations or ideas or activities intensifies.  We have seen these type of behaviors displayed in many different areas.  His fixated behavior has even increased to such a level that we have had to take his Kindle away from him.  When we attempt to have him put it away for supper, or homework, or the evening, he has an absolute full blown "Rainman" style meltdown.  We attempted to address this by setting up time limits on the Kindle through their "Freetime" option that allowed us to limit its usage to 30 minutes.  After that time, the Kindle would shut down and become unusable.  This seemed to work fine on the weekends when we don't give him his medicine.  (We have only been administering the meds on school days.) Unfortunately, the same cannot be said for school nights when he has had his medicine. 


If school had been experiencing increased focus and decreased impulsivity, we would have figured out a way to make it work.  Because they have not, we are again going to remove him from his current medication and consult with his neurological team.  Because the other families of medication require our son to be able to swallow pills, we have started trying to teach him the process.  Like most physically based activities, it is a process.  We are practicing with mini M&Ms.  When he can successfully swallow those, we will progress to swallowing regular size M&Ms.  I feel like this is their last opportunity to find the right medication for our son.  He has lost ten pounds over the last two months.  I feel as if we are experimenting with his little body.  The process has me very frustrated and heartsick. 


After discussing our options, my husband and I just don't know what else to do.  His aunt had recently mentioned a special diet that one of her patients utilized successfully with her own children.  Do we try something like that?  We already closely monitor our children's diet by eliminating as much sugar, caffeine, and red dye as possible.  We haven't tried a specific ADD diet though.  At this point, it feels like one more dead end we just don't have the energy to go down.


Although we are frustrated with the process, there have been blessings.  Through the time that we have been trying to establish a baseline for his medication, his normal winter health issues have not developed.  Usually during this time of year, he has developed an asthma flair that requires round the clock breathing treatments; several prednisone boosts; and on going rounds of antibiotics.  So far this year, we have been blessed to avoid that.  It is a blessing.  I'm not sure we could have dealt with his health issues on top of his learning and behavior issues.  Sometimes it is the little things that help keep life in perspective.  We are grateful for those little things. Some days, it makes all the difference. 


 

Friday, December 27, 2013

Boundaries and Social Cues

It has been a really nice Christmas break for the whole family.  We all needed the time away from school and work to rest, relax, and refuel.  Other than host holiday dinners and gatherings, we have done very little.  It was just what the doctor ordered.

Yesterday was our follow up with our youngest son's neurology team.  They are in agreement that we haven't yet met the appropriate level for his new medicine to effectively address the concerns the school has regarding his impulsiveness and lack of focus.  As a result, they bumped his current medicine up to the next level.  We also discussed, and the neurology team confirmed, that there are several areas of concern that medicine cannot rectify.  These "quirks" are simply unique to his neurological "wiring". 

Two "quirks" that we continue to address on a fairly consistent basis are his lack of boundaries with other people and his lack of awareness of social cues.  Both of these issues came to a head right before the Christmas break.  The school received a letter from another parent regarding our youngest son.  Apparently, he been pulling on the hood or stealing the hat of a younger student almost every day while waiting for the bus in the afternoon.  The kindergartner was so afraid of our son that they were having trouble getting him to come to school.  In today's day and age of bullying awareness, this letter was taken quite seriously by the teaching staff.

I know that many of those reading this will come down on one of two sides of the issue.  One camp will feel terrible for the little guy who was too afraid to want to come to school.  The other camp will be thinking "Come on.  Terrified of a kid stealing your hat or pulling on your hood?  That's just ridiculous!"  Fortunately, we were able to see both sides of the issue.  As his parents, there were bigger issues at work than the obvious. 

The first issue is one that we continue to have to address on a fairly regular basis.  Our son is very tall for his age.  In addition, at different stages in his unique developmental cycle, he stutters and drools.  Although he has average intelligence, his gross motor and fine motor delays combined with his other developmental quirks could lead someone to perceive him as "slow" or mentally deficient.  These factors, taken all together, could be very intimidating to a little kindergartner who may not have much experience with other children with special needs.

Besides his unique physical issues that could intimidate a younger student, you have to factor in our sons "social issues".  He just doesn't grasp the importance of boundaries.  If he likes you, he thinks nothing of invading your personal space; kissing you; touching you; or otherwise potentially making a person uncomfortable.  In addition, if the person in question were to give off obvious nonverbal signs of discomfort with our son's actions, he wouldn't understand them.  Pulling back or away has no meaning for him.  Facial displays of disgust or concern have little impact on him.  He just doesn't grasp their meaning.  If the younger child had not openly expressed concern for our son's behavior, he would not have comprehended that the child was upset.

Fortunately, when our oldest son was much younger, he was more sensitive by nature than our youngest son.  Our oldest was the child who wore his heart on his sleeve.  His feelings were easily hurt by other kids when they were rude or disrespectful.  We had a time period when he didn't want to go to school because of the actions of one or two other kids.  Fortunately, he learned to grow a tougher skin, so to speak.  He has learned to take other people in stride without taking it to heart.  That experience with our oldest gave us a greater insight and empathy for what the other parents may have been going through with their own child. 

In this particular case, our youngest son's Title I teacher (an angel) once again took the lead in dealing with the problem.  She took him down to the classroom of the other student and addressed the issue with the two of them.  When our son realized that the other child was very upset with his behavior, he was devastated.  He apologized and seemed to take it very seriously.  His teacher filled me in on what had happened by email. 

In the meantime, the school had a half day while I had a full day of work.  I forewarned my husband that there had been an issue at school that I would address when I got home.  I asked him to confiscate our son's Kindle until I had a chance to talk to him.  He attempted to talk to my husband about the issue but kept telling him "I can't talk to you. You won't understand.  I want to wait and tell Momma."  As a result, my husband left this issue go until I had the opportunity to get home and talk with him. 

When I arrived home, our son came stomping up the basement steps so I asked him to come see me.  He initially said he didn't want to but did anyway.  I started the conversation by pulling him onto my lap and telling him that I loved him.  I would always love him, no matter what.  I then asked him if he had anything to tell me.  Well, the flood gates opened!  Out it all came.  We discussed that he needed to keep his hands to himself and not touch other kids at school (this is NOT a new conversation!).  In addition, we discussed the fact, that he was a very big boy and that could be scary to a little kid who was much smaller.  We also discussed the fact the other boy had been so scared of him that he didn't want to go to school.  He took it all very seriously.  He came up with the idea of writing an apology card to the other student.  Because he had lost recess for the week at school, we mirrored the consequences by taking away his Kindle for the same time period.  Everyone involved, the teaching staff, his support staff, and ourselves agreed that we probably wouldn't have to address this particular behavior in the future because he had concretely been able to see the impact of his behavior.  It would have a long term impact on him.

I offer this small scenario as an example of how children and their parents encounter very similar circumstances on a fairly regular basis.  This particular scenario isn't unique to our son and his issues.  What is unique is the fact that we will have to have a similar conversation with our son regarding his boundaries again in the near future.  Probably many times in the future.  Yet, it is his lack of boundaries that endears him to so many who come in contact with him.  As one woman told me, "He is so open.  His heart is blatantly loving and open to loving others."  Somehow we have to help him learn to balance this love for others with a recognition that not everyone want him to be in their space and not everyone is open to wanting that level of love and affection.  It's a hard balance for adults to maintain, let alone an eight year old who naturally lack such awareness. 

We will continue to support our little man as he learns to navigate this complicated world we are living in.  I pray he always maintains that loving empathetic heart for others.  I also pray that he develops an awareness of the social cues that allow him to successfully navigate the world with his peers.  We will be there on the journey to help him along the way.


Wednesday, November 27, 2013

Thanksgiving

The last few months have come with some real challenges.  Throughout that time, we have also been blessed.  It is important to not only face the trials in life, but to also give thanks for the grace and answers to prayer as they are presented.  My youngest son has been one of my greatest teachers of that life lesson.  He faces every challenge with a smile on his face.  He embraces life with one hundred percent enthusiasm. 

I am thankful for modern medicine and access to medical services.  If my youngest son had been born in a different era, or even a different country, I have no doubt he would not have survived to see his eighth birthday.  He had his first ear and respiratory infection when he was only two weeks old.  In his first seven years of life, he has had five different surgical procedures and two sets of stitches.  His asthma has required close monitoring, preventative efforts, and diligent treatment from the very beginning.  Without his daily non-steroidal and asthma relief medicine, he would not be the relatively healthy boy he is today. 

Almost daily, I'm grateful that our oldest son was born first.  He has been such a bright, good natured, kind hearted, EASY child to raise.  If we hadn't had him first, I would probably doubt my parenting choices even more than I already do.  My background and training is in behavior modification and education.  Parenting should be a no brainer.  If I had had our youngest first, I have no doubt I would have torn myself apart with self doubt.  Besides providing a measure of reassurance of our parenting skills, our oldest has also been a huge help with his little brother.  Having his brother in his life has taught him compassion and patience that he might not otherwise have learned at the young age of twelve. 

Because of our son's needs, I am grateful for my education and training.  I originally went to college for early childhood and elementary education.  While at school, I stumbled across a new exceptionalities concentration the university was starting.  I was fortunate to be accepted into the pilot program.  This training has allowed me to work closely with our son's therapists over the years.  It has given me insight into their methods and his needs that I might not have had.  It was by chance that I entered the world of corrections education and behavior modification.  Without those experiences, and my masters in curriculum and instruction, I might not have the understanding needed to ask the questions needed to help my son.  This training has been invaluable as we have become enmeshed in the world of formal education, special education, and school age therapy services. 

I am grateful for a job that stimulates and challenges me.  No two days are ever the same and it's definitely never boring.  Most days, I feel like I am making a difference in the lives of my girls.  I feel like working with my girls has taught me the patience and the skills needed to help me deal with my son and his needs.  There are also days that I feel that he is better preparing me to deal with them.  Isn't it funny how life doesn't give us what we want or expect, but rather what we need? 

 Finally, I am thankful for the love and support of family and friends.  We definitely wouldn't be where we are today without them.  Our church family has prayed for us every step of the way.  Family, and our neighbors that have adopted us as family, have been there to watch the boys and give us a break from time to time; provide moral support; and even help transport our son to therapy sessions and appointments at the hospital.  Friends and family have learned to administer breathing treatments and medication.  They have listened and laughed and cried with us through the good times and the bad.  I am grateful every day for their continued presence in our lives.

Lord, I know these are just the tip of the iceberg in terms of the blessings you have provided.  There are more than I could put into words.  Please continue to watch over us as we continue this journey.  Guide on the path you would like us to follow.  All things are possible through you.

Saturday, November 16, 2013

Helping or Hindering

Our trip into the world of medical intervention has been a bit of a roller coaster ride.  It was one month ago today that we started our youngest son on the recommended Attention Deficit Disorder (ADD) medicine.  Because of my strong reservations regarding medications, they started him at the lowest possible dose for his age and size.  There have been two small increases since then, the last being this morning's dose.  I will not give him another dose until I talk to his neurology team in the morning.

The very first time I gave our son his new medicine, I did so with equal parts hope and trepidation.  He and I were spending a quiet day alone at home.  I was planning on doing some housework and grading some papers.  About mid-morning, I thought I should try a small experiment to see if I noticed any difference in his behavior.  Typically, asking him to clean his play area in the basement results in whining, tears, and a long drawn out process that usually results in me "helping" him do most of the picking up and putting away.  Usually, I have to identify one type of toy, for example blocks, and ask him to concentrate on picking up just those items.  This process has helped me gain the most success when it comes to getting him to pick up after himself.  It still takes hours.  I'm not exaggerating!  It is stressful and exhausting for both of us.  On this "experimental morning", it took my son ONE HOUR to clean the basement.  He was enthusiastic about going to clean it up.  A couple times through the process he called me down to show me his organization techniques or to ask me to take some dirty clothes upstairs.  AN HOUR!  When he was finished, he came up and asked for lunch.  After lunch he proceeded to voluntarily go clean his bedroom.  I felt a mixture of relief, joy, and guilt.  If this medicine was all it took to help him find his focus, why had I waited so long to give it to him?  I wondered if I had been holding him back from his true potential.  I was so relieved that it might be this simple. 

By mid afternoon, the medicine had worn off.  His brother and father came home.  Life returned to our version of "normal".  We went to our fire hall for our annual family dinner and hay ride.  Our son vibrated!  They warned us he may experience "rebound" energy when the medication wore off.  I'm not sure if this was rebound energy or just plain old excitement and over stimulation from one of his favorite activities of the year.  He was okay.  His behavior was appropriate.  He just bounced.

After a week and a half, I needed to check in with his neurology team regarding our progress.  We had not seen any significant change in behavior or impulsivity after the first day.  His team at school was reporting no change in behavior.  Unfortunately, if anything, they reported that he seemed to need more non-verbal and verbal prompts than usual to help him stay on task.  His neurology team doubled his initial dose upon hearing our report. 

Family and friends soon began to comment on how much more focused our little guy seemed to be.  He seemed more content with himself and proud of his accomplishments.  The desire to clean up and keep things cleaned up continued after doubling the dosage.  A new trend that concerned us a little began to emerge.  He seemed much more intense in his need to complete tasks.  If a job needed to be abandoned or postponed for a meal or another activity, he would prefer to skip the meal or activity rather than abandon or postpone his current task.  He seemed to be displaying less impulsive behavior but seemed to be showing more obsessive behavior.  We questioned if that was just personality traits emerging or if it could be a related side effect from the medicine.

School continued to report that they were seeing no improvement.  They were continuing to need to provide a higher than usual number of verbal and non-verbal prompts to keep him on task.  A team member that has been with him from the beginning also commented that he appears to be more disheveled and relayed an incident in which he became upset trying to remove his coat before it was even completely un-zippered.  She also had concerns with his increase in "mouthing" objects like his clothing, papers, books, etc.  These comments upset me.  We were seeing definite improvement in some areas.   Sure we had some concerns but I felt we have to be realistic.  His issues are neurologically based.  Medicine isn't going to be a panacea, a cure-all.  Some of his "quirks" won't be cured by medicine.  We have to be realistic in our expectations.

In light of the feedback from school, his neurology team decided to slightly elevate his dosage for a third time.  I need to clarify that it is still a VERY low dose.  Today was his first day on this new dosage.  We had a breakfast fundraiser at our fire hall this morning so it was an ideal situation to test his response to the new dosage.  For the most part, his response was very favorable.  He did a series of small jobs with his "old ladies" including putting silverware in paper sleeves; helping set up tables; putting out creamers and sugars; and cleaning up afterwards.  The only fly in the ointment was one of his "blow up" episodes towards the end of the breakfast.  I was tied up cooking eggs and not paying attention because he had been kept busy all morning by the older ladies at the fire hall.  I became aware that he was becoming over stimulated when I realized he was running around using a "fart book" behind people.  When it escalated to doing it behind people his didn't know, I asked him to please return the book or give it to me to put away.  He escalated very quickly.  The old "rain man" repetitive phrase behaviors emerged.  The glazed "I'm not really hearing you" look came into his eyes.  At that point, I scooped him up and went out the back door.  It took several minutes of quiet out back for him to regain his composure.  He kept taking deep breaths and saying "I'm calm now." but continued crying and repeating the same phrases like a broken record.  I said "Do you even know why you are this upset?"  He told me no; threw his arms around my neck; and started to cry in earnest.  It absolutely broke my heart because I genuinely think he had no idea why he was that worked up.  Fortunately, he was able to regain control.  He went back in and helped one of the older ladies begin to clean up her cart and table area without further incident but continued to look weepy for at least another ten to fifteen minutes.  Where was this intensity coming from? 

I very much blamed myself for the incident.  It felt as if I had become too complacent with the medicine and took for granted that those who knew him would help keep an eye on him.  I know that once he becomes over stimulated, he can't pull himself back without an explosion.  Missing the signs that lead up to that, meant I missed my opportunity to prevent the explosion.  I felt rotten.  It was my fault, not his.

The rest of the day progressed pretty quietly.  His dad was out hunting on the last day of archery season.  His grandfather took his older brother out turkey hunting.  He hung out with his grandmother and I at our house.  There was an intensity to his interactions, an edge at times, but nothing that wasn't manageable.  His grandparents stayed for dinner after everyone finally made it home.  As a result, they got to bed about a half hour later than usual.  An hour after that, he was still wide awake and buzzing.  He came down to write a list of things he needed to do tomorrow.  When I went to collect him to see if he would come cuddle with me to get him settled in for the night, he replied "I have to write this down to get these words out of my head."  I was concerned.  This is a guy who falls asleep literally within minutes of being put in bed.  It was two hours past his bedtime and he had "words in his head?"  After another half hour of cuddling and still no sleepiness, I asked his dad to get him a dose of children's Benadryl.  Our neurologist had told us that some parents have had to resort to this after an adverse reaction to a medicine.  Was that the case this time?  As it kicked in, he finally asked me to tuck him in upstairs.

The ADD medicine should have been out of his system by mid afternoon.  Was this a medicine side effect?  Was it a neurological side effect from introducing the medicines into his system?  Was it just a restless night?  I don't know the answers to the many questions that the last month has given us.  Why are we seeing progress but the school isn't?  Why the increase in obsessive behaviors?  Are the small gains we've seen worth the obsessive behaviors we've seen? Can this medicine have a long lasting boomerang effect that lasts for hours?  Is this the wrong family of medicines for our child and his condition?  Are we treating the correct neurologically rooted behavior?  Most importantly, will this ever get easier?  Will we ever experience "normal"?  What will "normal" look like for us?

I will not be giving him any more doses of any medications until I personally talk to his neurological team.  We need to have some hard questions answered.  I know this is a process.  I'm committed to seeing this through.  I just pray we have made the right decision by going this route.  If it isn't the right direction, I pray for clarity and insight.  I most strongly pray for answers.  In His time and in His way... I just pray it's sooner rather than later.  Please Lord, let it be sooner.

Friday, October 25, 2013

To Medicate or Not to Medicate... Is No Longer a Question

Yesterday was a terribly long day.  I lived in dread of the meeting with our youngest son's neurology team after work and school.  We had some very difficult decisions to make.  They were decisions that we had been putting off for some time.

Our son's primary neuro developmentalist is someone we trust implicitly.  He is extremely knowledgeable.  His focus is always on the individual child, not the diagnosis.  The physician assistant (PA) we have been working with is also extremely knowledgeable.  In addition, she is one of the most down to earth, personable people I've ever worked with.  She hears your concerns and knows just how to address them.  Her advise is practical but empathetic.  We trust what they advise.  I just didn't want to hear what they advised.

As I have alluded to in recent months, our son had been going through a difficult developmental stage.  He was seeking independence and the limitations he encountered made him extremely frustrated.  The behaviors we were experiencing were a direct reflection of that frustration.  Starting the new school year in the midst of that developmental stage, paired with some administrative and staffing changes at his school resulted in a pretty explosive little guy.  Thankfully, our son's therapy team had remained unchanged.  These angels know our son well and love him dearly.  They took the lead in educating his new team at school on the quirks and behaviors that are particular to our son.   His Title I reading teacher shared the behavior system that she had successfully implemented with our son last year.  This system focused almost exclusively on his successes.  As a team, we implemented this system both at home and at school.  The changes in his behavior and frustration have been amazing.  His behavior has improved and his frustration levels have decreased.  Things seem to be coming more in line with the little man that we all knew and loved previously. 

We are fortunate that the behavioral difficulties we were experiencing have diminished greatly.  Unfortunately, as his behavior has improved and returned to an expected level for a little guy his age, it has made other areas of concern more blatantly obvious.  People will often say that our son lacks focus.  I would argue that the opposite is true.  Our son is intensely focused, just not on the things he is expected to be focused on.  He can not determine what is important stimulation in the environment and what is not.  The guy running down the road is just as important, if not more, than his Father telling him to please not point the fork in his hand at his eye.  He zones out to a degree that he fails to acknowledge the new stimulation coming at him, whether important or not.  I could give you dozens of examples of nearly avoided accidents or minor injuries that have occurred within just the last week or so.  One night this week, within two feet of his father, in less that one minute of turning around and turning back, he ate his brother's bedtime allergy/asthma pills.  Not because he wanted them but because they were there and he mindlessly put them in his mouth.  It was an unconscious impulse.  Only through constant, diligent supervision do we manage to keep him safe from himself.  It is exhausting.

Our son has been bringing home great grades from school.  He is doing very well academically.  Unfortunately, the degree of difficulty and complexity is coming at a faster pace.  Our son is struggling significantly with multi-step processing type activities.  We have to break them down into simple steps, build upon them, and combine the processes to help him reach the conclusions that they want him to reach.  For most kids, it is supposed to be a quick homework activity.  It is becoming more of a challenge for us to look at what is involved; identify what is the root activity or processes behind the assignment; then break it down to the level that he can manage.  He cannot make the jump to those higher level processes yet.  I know he will if given enough time.  They move forward before he is at that point though.  He is just beginning to be quickly getting left behind.  If not resolved now, it will only get worse.

His neurologist told us he is a prime candidate for medical therapy for several reasons.  One, he has no aggressive, unexplained angry tendencies.  He is a sweet natured guy.  Two, he has a behavior system in place and his behaviors are now well maintained.  Three, communication and cooperation between the school and home are in place and well utilized.  Finally, in light of all the other points, he still struggles with impulsivity and distractability to a degree that it is impacting his education and his safety.  We had to agree.  It was the best decision for his education, his safety, and the sake of our family.  We cannot continue to maintain this level of hyper vigilance to try to stay on top of everything.  It is taking it's toll on all of us.  I don't know how much longer we could continue on the path we were on.

With that said, last night was a long night.  Our son fell asleep on the way home from his appointment and didn't wake up even after being carried to bed.  He was exhausted.  I'm grateful.  Throughout the consultation, I had held it together but I couldn't hold it in any longer.  I don't want these chemicals in my beautiful baby's body.  What if it changes who he is?  What if it takes away his sparkle, that light that is the core of who he is?  I could never forgive myself.  I cried and cried and cried.  Not big sobbing boohoos but silent, uncontrolled tears rolling down my face.  My husband kept asking what was wrong.  All I could say was "I don't know.  I'm just so sad."  I knew our decision was logically the right one.  It just wasn't the one I wanted to make.  So I gave myself a night to feel sorry for myself, for us, and for the situation.  I gave myself a night to cry and feel sad. 

Today I woke up, put on my "big girl pants" and did what needed to be done.  I emailed the team at school and advised them of our decision.  We filled the prescription.  Tomorrow morning, I will start him on his new journey with his new medication.  I will monitor how things go; ask questions as needed; and do what needs to be done.  There is no other choice.  There is no giving up or giving in.  It's not an option.  He's too important for less than my best.  In the meantime, I will pray.  I will trust that the Lord has a plan.  He keeps bringing me to these places in life that I don't want to go but every time he does, it better prepares me for the mission I'm on.  I will trust that he will do the same this time as well.  My little man is one of the biggest challenges in my life but he is also one of the GREATEST joys in my life.  I had my night to cry.  Now I pray and kick butt when needed.  We've got a journey to go on!

Friday, October 4, 2013

When Your Best Just Isn't Enough

Admitting defeat doesn't come easily to me.  Recently, I have had to admit failure in two areas that I hold closest to my heart.  One area is at work with the girls that I love.  The other is at home with my youngest son that I love.  Both failures weigh heavily on my heart.

A phrase that is commonly used in our home is "A job isn't worth doing if it isn't done well."  We try to live by those words.  Doing a job well is easy when you love what you do.  I do.  Most days, I love my job.  I teach court committed female offenders.  Some of them have been committed to our program by children and youth services because of family issues or conflicts.  Others have been committed by juvenile probation for committing a crime of some sort.  For fifteen years, I have worked almost exclusively with teenage female offenders.  I love them.  They are my girls.  The way I feel about them doesn't excuse the choices they have made in the past.  It doesn't excuse the mistakes they will probably make in the future.  Instead, it sees down into the heart of who they are, a lot wounded, a lot angry, a lot lacking in basic life and social skills.  I love them.  They are my girls.

There are days I think I'd like to quit my job to become a Wal-Mart greeter.  It might be easier than trying to teach seventeen and eighteen year-olds with fifth grade reading levels subjects that hold no interest for them.  It might be easier than trying to get girls who are supposed to be seniors earning twenty-four credits to graduate when they only have eight or nine earned.  They lack the credits to graduate and lack the skills to pass the General Equivalency Diploma (GED) exam.  I'm supposed to motivate them to want to attend school when they know in their hearts that there is very little they or I can do for them.  Ironically, somehow, I often succeed and they try.  They try to do work that they see no purpose in.  They try to work towards a goal when they know they are going home to the same situations that led them to where they are.  It's these girls that keep me motivated to keep trying to reach one more girl, to make a difference in one more life.  Who knows where her life may lead?  She may become something phenomenal.  She may become the mother of someone that changed all our lives for the better.  Wouldn't I want someone to care that much for my child?  It just so happens that I do.  I want that for all of our children.

I have recently faced some disheartening challenges.  I have had several girls fail at our program that I had invested considerable time, energy, and love into.  They had to leave for more restrictive placement because they couldn't make the changes that were needed for them to succeed.  These failures weigh heavily on my heart.  My last words to the one girl were "I love you."  She replied "I know.  I love you too."  It broke my heart but it's been broken many times by many girls. 

We have had to face the fact that our sons impulsiveness, unpredictability, and inability to focus has worn us all down to almost nothing.  We've implemented behavior plans, shared information with the school, and maxed out our resources.  His behavior has shown some improvement.  He's bringing home almost all As on his classwork.  Things have even gotten better on the bus.  None of that changes the constant need to supervise him to ensure his safety from his own impulsive choices.  None of that changes his inability to focus.  None of that changes the anxiety symptoms he is beginning to display from constantly trying to do what is expected of him when his body and mind aren't prepared or capable of doing what is being asked on him.  In light of the summer and fall that we have faced, we've asked for a consult with his neurological team.  They want to gather information from everyone involved but have forewarned us that they are strongly leaning towards the need for medications to help him gain a measure of control over his impulsiveness.  I do not want to put chemicals into his body.  It is one of my biggest fears.  There are too many "what ifs".  Unfortunately, barring any new ideas or recommendations, we feel we may have maximized our resources. 

We are all exhausted.  Very, very exhausted.  I've had to put them in the Lord's hands.  I can give all of myself to my girls and to my son.  I can guide and lead and love.  Ultimately, they must choose the paths they will follow.  I have to trust that the Lord will be there if and when I fail them.  I have to have faith that something bigger than myself is at work.  Please Lord, watch over my kids.  They need your intervention and love.