Giving Thanks

I've learned to try to embrace life, the good and the bad.  We never know how much time we are going to have here on Earth or how long we will have to enjoy our loved ones.  Some days it's easy to find the beauty.  Some days you have to look a little deeper.

For the last week or so, our youngest son seems to be barreling through life in a manic whirlwind.  Full throttle.  Happy.  Angry.  Frustrated.  Full intensity.  As a result, I can admit that I was looking forward to going to work with my oldest son while our youngest spent the day at home with his father.  It was a fun day for my oldest son to volunteer in my classroom with the little ones.  It gave him a chance to see me at work in an environment where I am usually happy and relaxed without the added edge I sometimes develop while at home.

My husband took our youngest son to speech therapy at the hospital as scheduled.  When our oldest son and I finished at school, we met them at the hospital so we could all go out for supper together.  The change in schedule and the opportunity to introduce his speech therapist to his brother sent our youngest son bouncing off the walls with excitement.  He literally bound from person to person handing out kisses and hugs and talking a mile a minute.  You could literally feel the energy pulsing off of him.

We had decided in advance that we would take them to our son's favorite Chinese restaurant.  The prospect of eating there increased his excitement exponentially.  He strutted through the doors on his tip toes, chest puffed out and declared "Hallelujah!  Praise the Lord!"  It took physical touch and constant verbal prompts to keep him from running into other patrons or spilling food and drink.  His excitement was a tangible thing.  I noticed several tables of other diners watching us curiously.  Fortunately, we were able to keep him fairly contained until we were preparing to leave.  His brother merely tossed his fortune from the fortune cookie onto a dirty plate covered in gooey sauce.  This sent our youngest into a tailspin.  He kept trying to grab the fortune that was now a yucky, sticky mess.  We had to physically sweep him out of the booth and usher him towards the door.  He exclaimed "I need it.  I need it to remember this night!"  The other men zoomed him out the door while I paid the bill as curious patrons gawked at the scene.

Thanksgiving morning dawned with the clanging of a large plastic carrot against a metal bowl.  This was our son's wake up call to the family.  Thanksgiving had begun.  It was one of those days where his energy was hard to contain.  We had a fight over socks and shoes.  (Yes, you must put them on to go out in 30 degree weather.)  We had a fight over cleaning up the toys, rakes, shovels, and wagon  he had left littered over the yard yesterday.  We had a fight over brushing his teeth.  (Sorry man, they must be brushed daily.)  We had a fight over refusing to take his meds.  (Are you kidding me?!?)  We had a fight over the ability to watch the Macy's Day parade AFTER he cleaned up his stuff outside.  We had a fight when he couldn't locate his Charlie Brown's Thanksgiving Day DVD.  Apparently, it was my fault that it couldn't be found.  We had tears over soda vs milk.  We had tears over the fact that we had RUINED Thanksgiving.

It was one of those days.

Once his extended family started arriving for lunch, he seemed to better harness his excitement that was coming out sideways all over the rest of us.  He had other people to talk to, share with, and entertain.  When his great-aunt agreed to play a board game with him, it gave him something to focus on and seemed to further de-escalate his excitability.

Through it all, truthfully, I wanted to scream.  I could feel his energy crawling into me and threatening to take me over.  I had to work to keep my cool and I'm not sure I was very successful.  My frustration was very evident.  I'm not proud of that.

On Thanksgiving evening, I am thankful for the joy in those crazy, chaotic moments.  His pride in sharing his family with his therapist.  The shared laughter of our family over dinner.  Curling up on the couch with him after we came home from the restaurant.  Reading him a bedtime story.  Cracking silly jokes over his wake up call.  Laughing at his game time conversations with his great-aunt.  Sharing stories.  I am thankful for the love that we share that helps us to move through the frustration and the challenges.  I continue to pray daily for strength, patience, and fortitude.  Maybe I need a vacation too.

Hanging In There

It often feels as if I find myself living in a world where it's very easy to quit. Many things in life that used to be considered constants, like marriage, family, and faith, seem very disposable these days.  Some things just shouldn't be given up on, no matter how hard it gets.

Life with our youngest son has never been easy.  It's easy to love him.  That smile.  That sparkle in his eyes.  That deep belly laugh that bubbles up.  Loving him is the easy part.  Raising him is not.  Preparing him for what's before him is not. Middle school is coming.  Far too soon.

Our son's behavior has stabilized to a managable level.  We have very few meltdowns these days.  He seems to have learned how to regulate his anger and frustration.  The manic repetitive behaviors that he can be prone to have diminished as well.  These are all very positive advancements.

My husband and I have known for awhile that our son was in the midst of another regression phase in his abnormal developmental cycle.  As I have discussed previously, he tends to experience a burst of development that eventually plateaus.  That plateau is most often followed by a regression period.  This phase is almost always accompanied by severe stuttering and blocking, increased drooling, inattentiveness, distractedness, clumsiness, and loss of self-help skills.  This period of regression is often followed by another burst of development.  Ironically, these regression phases often accompany a large growth spurt, almost as if his body can't physically grow and maintain intellectual development at the same time.

At our son's fourth grade parent teacher conference last week, his team was very frustrated.  They had implemented both traditional and creative methods to try to help our son stay on track, self-regulate, self-monitor, and learn.  Unfortunately, few of their efforts seem to be helping.  Their frustration directly mirrored the frustration my husband and I have been feeling at home.  At school, he is eating his pencils.  Actually eating his pencils.  Chewing the tips off.  Eating the erasers and metal ends.  He is wearing wrist bands and chew necklaces.  They tried chewing manipulatives.  I bought him chewable pencil toppers from the Autism Support website.  They tried gum, candy, sour hard candy.  Nothing seems to stop the chewing.

They cannot get him to focus or remain focused.  It requires physical touch to get him to go to his seat and keep him seated.  It's not oppositional behavior or aggressive behavior.  He simply gets up and wanders around.  He takes forever to get his belongings and settle in to work.  When seated, he stares into space or stares at his peers.  He forgets everything, including clothing, agendas, books, lunch bags, anything not attached to his body.  Things that we read and reviewed at home, things that we know that he knows and understands, he gets wrong on the tests.  There is no consistency to the type of questions that he gets wrong.  Nothing that can be pin pointed to focus on with our studying.  He is consistently inconsistent.

Against all odds, he scored a 91% in math on his report card. He was so excited.  He calls himself a math genius.  He scored a Satisfactory in science.  Predictably, he scored a 65% in reading on his report card.  Passing is 65%.  We wondered if bonus points were utilized.  Reading is a significant challenge for us each night.  Getting through the reading with a child that stutters and blocks is PAINFUL.  We have utilized many coping techniques including techniques from his speech sessions; a clear acrylic reading tracker; sharing/dividing up the passages; note cards/study cards; question and answer discussion, etc.  In spite of our best efforts, and their best efforts at school, he is passing by a single point.  It is especially frustrating because it isn't a true reflection of how very bright he is and what he is capable of.

His Title I teacher, his primary support and our primary contact with questions, concerns, and recommendations, is going on maternity leave in two weeks.  She will not return until March.  His classroom teacher is going on surgical leave in two weeks and will not return until January.  He isn't due to be tested by the school psychologist until March.  His Individualized Education Plan is not due for review until April.  His neurological team wants a full scale evaluation by the school team but that won't occur until the spring.  The kid that needs the most consistency will have none.  We are left with lots of questions but very few answers.

So what do we do?  Where do we go from here?

As a family, we keep life as consistent as possible.  We keep him in occupational therapy and speech therapy at the hospital.  We act as a resource for the school team, both old and new.  We continue to read and research, question, and challenge.  Our goal at this point is to keep him from regressing further.  We hope for growth but will not become disheartened if none occurs.  This year may be a wash with little progress gained.  Our frustration is that only puts him that much further behind his same age peers.  Unfortunately, we can't change his circumstances or his developmental cycle.  He is who he is.  The school circumstances are what they are.  We will continue to fight for him, fight with him, and support him every single step of the way.  We will give him our best.

Tears will be shed.  Fears will be faced.  I pray that progress will be made.  He is too important to give up on.  He is worth the effort.

Dealing With Change and Anxiety

Change is a normal part of life.  We all deal with it in different ways.  My oldest son and I tend to externalize our reaction to change in the form of talking.  We talk ourselves through the process of accepting the change that is taking place in our life.  My husband and youngest son tend to internalize their reaction to change.  They withdraw into periods of thought and reflection.  Any stress associated with the change tends to come out in behaviors that show their discomfort with the change that is occurring in their life.  

Change comes in many forms from minor schedule changes, to changes in employment, to births and deaths in the family.  As a family, we have been dealing with a variety of minor and major changes in our lives.  They seem to be having a cumulative effective on our youngest son who takes any change as a serious event that must be analyzed, evaluated, and added to his box of life experiences.  Even seemingly minor changes in our lives often have unforeseen implications for him.

On the last day of third grade, our youngest son left school very excited by his teacher assignment because she was the one he had wanted to get for class.  Fortunately, he also got to keep his Title I teacher and her assistant.  His speech teacher and other therapy team members would also remain unchanged.  As his parents, we heaved a sigh of relief because it appeared that there would be very little transition to see him through.  

In spite of the apparent consistency in his educational team, our son expressed anxiety about transitioning to fourth grade.  Almost from the beginning of summer break, he kept telling us it was going to be so hard.  There was going to be a ton of homework.  There were going to be three PSSA tests instead of just two tests.  As the summer progressed, so did his anxiety.  Some of our choices that were designed to help him be better prepared for middle school in two years, probably had the unintended effect of adding to that anxiety.

As I have discussed previously, our son's stuttering and blocking had become very severe over the last year.  His self feeding skills and other personal care skills were also not age appropriate.  With the thought that we had one more school year to prepare him to face middle school, we decided to re-enroll him in out-patient speech and occupational therapy (OT) services.  Although we could see improvement in his speech issues, it seemed to give him something else to fixate on.  Would he still have speech and OT at school?  If he had speech and OT at the hospital and at school, would it be too much?  He was going to have too much homework to do this other stuff too.  

Another big source of change and anxiety for our family was a change in my employment.  After eighteen years of teaching teenage females in correction settings, I was re-assigned to a Pre-k classroom.  This new assignment is 45 minutes from home.  For the first time in their lives, I am now leaving home before my sons are on the bus for the day.  Although my oldest son is in high school and more than capable of putting his brother on the bus, this change caused our youngest son a lot of concern.  Where would I be during the day?  What would I be doing?  What if he needed me?  It's really far away.  I was quite anxious about making a major transition in teaching environments but had to put my own fears on the back burner and focus a lot of energy on helping our son see this as a smooth transition.  

Just as we entered my second full week of teaching in my new assignment, the district I am contracted to went on strike.  I have now been off work waiting for the strike to end for almost three weeks.  This has opened new sources of concern.  Every day he asks "When are you going back to work Mom?"  "Are you going to work today?"  "What are you going to be doing today?"  "Where are you going today Mom?"

In addition, we have had two deaths, a birth, and a wedding all within the last month.  One of the deaths was work related but the discussion of it and the sadness expressed over it, seemed to effect him.  A wedding is a beautiful source of joy and there is nothing our son enjoys more than partying at a wedding.  But this too brings anxiety.  When is it?  Where is it?  Who will be there?  What will happen there?  The birth of my niece meant a two hour drive down to see her.  He started talking as soon as he got in the truck and continued to talk (non-stop) until we pulled in my brother's driveway.  The most recent funeral that we attended was for a long time friend that passed from the effects of Leukemia.  We attended his services and memorial dinner as a family.  Seeing our friend grieving for the loss of her husband had an impact on our youngest.  Many times that day and in recent days, he has said "She was crying Mom.  She was really sad."  It has been a great opportunity to discuss sadness and loss.  It seems to be something he is trying to make sense of in his mind and in his heart.  I'm not sure he has fully processed it yet but I think he is making progress.

As I often describe to others, our son's anxiety "comes out sideways".  His anxiety over school and homework often takes the form of picking a fight with me to vent his frustration and fear.  If I tell him I've had enough and need a break, that he needs to work with his father or brother, he clings to me and cries and begs me to keep working with him.  "I need you.  They can't help me."  It is so hard to control your frustration when you just need to step back for five minutes and he physically will not separate to let you regain your composure.  I get chest pain.  I feel like crying.  As the adult, I have to swallow that and maintain.  Sometimes, I don't want to be an adult.  Sometimes I don't want to maintain.  When you're a mom, you don't get a choice.

Our son's play often reflects where he is mentally and psychologically.  For example, this week he has been planning the funeral services for one of his stuffed animals.  Yesterday, he took his Bible out and went outside to perform a burial service for him.  He asked if the family had plans for Thursday night because that was when he was holding the funeral dinner for his stuffed animal.  A couple weeks ago, several of stuffed animals got married.  The whole family had to go down to the basement to attend the service.  He had seats set up for us and a script written of what everyone would say.  When he plays school with his stuffed animals, he often "tests" them to see how well they read or complete math worksheets he has created.  His play is often a clear window into what his mind is focused on.

Thankfully, I return to work on Monday.  I'm looking forward to having us all in a routine together again.  School has not been going as well as I would have hoped and his Title I teacher will go on maternity leave around the Christmas holiday.  I will have to make up days lost due to the strike over the holidays when the boys and my husband are off school and work.  I know these are transitions we still have to face.  I don't look forward to them but change is a fact of life.  It's our job to teach him how to accept change; help him adapt to it; and how to become stronger through his life changes.  With our support systems and lots of prayer, we'll get there some day.

Laugh Until You Cry

From the beginning of the day, it was apparent that it was going to be one of our full throttle days.  Our youngest son woke in a whirlwind and soon started his swath of destruction.  It started with his breakfast muffin, a special treat his father had left him.  After he finished eating, he looked at me and declared "Hey Momma.  I think my muffin desploded."  It surely looked as if it had.  Muffin debris was everywhere on the table, chair, and floor.  We cleaned it up.  When we finished and I went for my keys to take our oldest son to his grandfather's house for the day, I discovered my youngest son had left a chewy granola bar open in my purse after speech therapy the day before.  Grrr.  Another mess to clean up.

It was one of our son's very verbal days.  Every single sentence or conversation started with "Hey guys.  Hey guys.  Guess what?"  His verbal impulsiveness was off the charts.  Normal conversation etiquette of waiting your turn, volume control, and not interrupting others who are speaking were completely missing today.  Reminders and redirection were completely ignored or launched him into a meltdown.  Ironically, he had very little disfluency or drooling today.  

Creatively, he was a whirlwind of activity and energy.  He and his stuffed animals created a restaurant in the basement and hosted a cooking competition.  A little later, he set up a classroom for his friends.  At one point, he decided to dance for money and put on a performance in the middle of the kitchen as his father tossed him dimes.  He turned to me and asked "Don't you have any money for me Momma?"  As the evening wound down, he decided he was a DJ.  He put on a "DJ outfit" and gathered three, five gallon buckets to be his DJ equipment.  He covered them in masking tape and proceeded to host a dance party.  

In terms of thinking and learning, he was on full alert.  He completed his summer schoolwork then asked to go on Raz-kids.com to work on his reading.  When we came home from the store, he spent a lot of time "planning his life".  It consisted on making lists of things he would need to buy and what his life would be like when he "turned sixteen and moved out".  Lots of lists.  Lots of lists that involved talking loudly to himself as he wrote them.

All of these things are wonderful!  Creative!  Fun!  I truly find his mind entertaining and fascinating.

His behavior is also exhausting.  It is also hard to accomplish simple life tasks when he is spiraling from activity to activity.  Multiple times throughout the morning and evening, his older brother declared "Would you please stop spinning?!?"  At one point, I wanted to holler "Would you please stop talking?!?" but I didn't.  I'm just grateful he has the ability to drive my insane.

Summer has been a challenge because of the continuation of the regression that had started in the winter.  He has been stuttering, blocking and drooling.  His frustration levels have increased.  He has also started wanting to do everything for himself.  "I'm a big boy.  Stop telling me.  Stop helping me.  I can do it."  These are the things he tells us over and over as he spills, drops and breaks things.  As he trips, falls, and cuts himself.  

Because of this prolonged regression, his desire to be a big kid, and his adverse reaction to our assistance, we had contacted an out-patient therapeutic program to get him on the waiting list for speech therapy.  About a month ago, he started attending weekly speech therapy for hour long sessions.  He has genuinely been trying to implement the techniques he is being taught.  In the last week, we have seen a slight reduction in his disfluency and his drooling.  I'm hopeful that we are finally coming out of this regression and starting into another burst of development.  

At the therapy center, I met the mother of a sweet little guy with severe autism.  She and I have spent some time talking as we wait for our kiddos to finish their therapy sessions.  Her spirit and joy is contagious.  She talks about how far they have come with their son who is now eleven.  She is so joyful of where they are and hopeful for where they are going.  I enjoy my time with her.

I also feel ashamed.  My son is so bright and happy and expressive.  He can tell me what is wrong, what he wants, where he is going.  My son drives me to the point of insanity with his talking and animation and activity.  She prays for the day her son can use words to express himself.  I sometimes pray for silence.  

Tonight, at the dinner table, as my son ran in and out of the room, pursuing whatever activity was occupying his mind, yelling and interrupting any attempt at conversation, my husband cracked the world's dumbest joke.  I started to laugh.  And laugh.  And laugh until I cried.  I couldn't stop.  My husband and oldest son looked at me and declared "She's finally cracked.  She's lost her mind."  When I finally regained control, I finished my supper and went for a bath.  

I'm tired.  I'm wrung out.  But tomorrow is a new opportunity to find the joy in the moment.  To enjoy the beautiful spirit that is my son.  To thank God for blessing me with this happy, full throttle little ball of energy.  Tomorrow is another day.

Educational Qualifications vs. Medical Qualifications

There is a special challenge unique to raising a child with mild global developmental delays.  There are lots of questions but very few answers.  You have to fight for services and help as you seek your answers.  It can be a very frustrating road.  We have been told numerous times by a variety of professionals in both the education and medical fields that the work we do with our son and his ability to adapt and find solutions for his problems have actually hurt us when it comes to seeking answers and qualifying for services.  On standardized tests, he often scores on the bottom end of average and the upper end of below average.  That little difference can qualify or disqualify him for services and help.  If you are just beginning the journey and seeking answers for your little one, there are some simple facts that you need to know in order to fight your fight successfully.

One of the most important facts you need to understand if your child is diagnosed with mild special needs is that there is a big difference between educational qualifications for service and medical qualifications for service.  Medical services are seeking to identify and/or explain the physical reason for your child's disability.  Educational services are seeking to treat or compensate for your child's disability.  The tests and standards that both fields of professionals use are very different.  Sometimes the answers they provide will mesh and provide cohesive answers and effective solutions.  Sometimes the answers they provide will appear to come from different directions, providing conflicting recommendations and treatments.

For example, when our son was nine months old, the medical team and the early intervention (education) team agreed that our son was delayed in all areas: fine motor, gross motor, and speech.  He needed medical answers and early intervention services.  All testing at that time by both teams qualified him for services.

As our son approached three years old, he needed to transition from early childhood intervention to preschool early intervention.  In our area, in our state, those services are provided by different educational entities.  Although he had been receiving services for 2 1/2 years by an occupational therapist, a physical therapist, and a speech therapist, we needed to have him assessed by the other educational entity.  At that time, our greatest area of concern for our son was his limited speech.  Although he was turning three, he was only using two word phrases.  He relied on a lot of baby sign language to supplement his communication skills.  In spite of those obvious delays, because of the format of the formal assessment tool used by this educational entity, our son did not qualify for further speech therapy services.  The woman who tested him stated that his receptive speech was great.  In other words, he took in and understood all communication around him.  It was his expressive speech that was the issue but he had found ways to compensate for those delays.  She stated that if she could separate the assessment into separate categories, he would qualify for speech services but she could not.

So... what do you do?  We talked to everyone.  We sought answers.  We nagged, questioned, and educated ourselves about the system.  Ultimately, we discovered that although he wouldn't qualify for speech therapy services through the educational entity, he would qualify through a medical entity.  The problem?  Our insurance would only cover six weeks of therapy.  What do you do?  We talked to everyone.  We sought answers.  We nagged, questioned, and educated ourselves about the system. Finally, we discovered that our son would qualify for therapeutic services if we applied for medical assistance through our state through the medical loophole.  We do not qualify financially but because of our son's medical and learning issues, we qualified for therapeutic services.

Truthfully?  This was a HARD step for me.  I am very proud of how hard my husband and I have worked to build the life that we have.  We've educated ourselves; gotten good jobs; built a home; started raising a family.  I did NOT want to ask for assistance.  I almost let me pride keep me from getting our son the services that he needed.  It would have been a big mistake.  I'm glad I swallowed my pride and asked for help.  If you are just starting the journey, utilize the services and tools that are available to you to help your child.  If and when life settles, support others who are in need.

Time and again, we have run into the conflict between medical qualifications vs. educational qualifications.  Our son's school asked us to pursue having him evaluated by an audiology team to see if he had an auditory processing disorder.  The team evaluated him and determined that he did have an auditory processing disorder.  When we went to the neurology team, they stated that he had a neurological dysfunction.  An auditory processing disorder was just another way of stating that his brain doesn't work the way it should.  We shouldn't waste our time or money on the services that the educational team was recommending.  Our insurance company refused to cover the services recommended by the educational team.  When the school recommended that we have him evaluated for a visual processing disorder, we passed.  We knew what the medical team and our insurance company would say.  We had been down that road.

Recently, a friend recommended a book called "The Out-of-Sync Child" by Carol Stock Kranowitz.  For the first time in nine years, I have finally found a resource that seems to be talking about MY CHILD!  Over the years, we have read about anything and everything that people would recommend.  We wanted answers!  We wanted solutions!  Unfortunately, time after time, the resources that we read seemed to explain PART of our son's problems but never seemed to tell his whole story.  In this book, the author is describing sensory processing disorder and its many forms.  It is so exciting to think that someone knows my child and our situation.

I refuse to get excited.  I'm pretty sure I know how this will play out.  At our appointment with the neurology team in August, I will ask them about sensory processing disorder.  They will tell me that it is just another way to categorize a neurological dysfunction.  There is no cure for neurological dysfunction.  Insurance will probably refuse to cover services for sensory processing disorder services.

For those of you starting the journey, that's not the end of this story.  This story has a better ending because we have learned the system.  We have read and researched and educated ourselves.  The treatment for sensory processing disorder is occupational therapy.  Because of our son's poor fine motor skills, he already qualifies for and receives occupational therapy.  His OT services in the school setting only focus on fine motor skills needed to succeed in school, but not sensory issues.  Recently, he started receiving additional outpatient speech therapy services at a local medial facility because his dysfluency has become so bad.  When I discussed our dilemma with his new speech therapist, she was excited because their OT team does a lot of work with sensory processing disorders and have had great success in that area even with severe autistic children.  Because he already qualifies medically for OT services, we can meet his educational need at a medical facility that accommodates those services without even requesting a sensory processing disorder diagnosis or referral.

Know your child.  Know the system.  Educate yourself.  Read EVERYTHING!  Talk to people.  Weed out the crazy and the extreme.  Look for research driven data.  You are the best expert on your child.  You are his or her advocate.  You can do it.  Don't give up!

I Still Have A Lot To Learn

I take pride in how we have changed as a family and as individuals since the birth of our youngest son nine years ago.  He has made us stronger, more patient, more compassionate, and less judgmental of those around us.  It often amazes me that he still has lessons to teach me.

Last weekend, we went to a family reunion of distant relatives that we only see once a year.  As usual, our youngest son made instant friends with someone new.  It's one of his super powers.  He loves everyone and has no qualms about walking up to a stranger and introducing himself and making them his friend.  It is a trait I greatly admire because I am very shy and hate meeting new people.  I wish I had that self assurance in the face of new circumstances.

Because of my son's obsessive need to chew on his clothing and other objects and his tendency to drool, we have had him wearing wrist bands.  The bands can be used to discretely wipe his chin and mouth when he starts to drool.  It is an ongoing issue that we have found no solution to.  Instead, we have attempted to find ways to manage it.  So far, the wrist bands have been successful.  My biggest concern regarding their use is what other people will think or say.  I don't want to make him a bigger target for ridicule. 

At several recent events, including last week's family reunion, our son amazed me with his openness and lack of self consciousness.  He very matter of factly explained to kids he was talking to that he wears his wristbands to help him keep his face dry when he drools.  He then demonstrated how he wipes his chin with them.  The first time he explained to a stranger what they were for, I pulled him aside and told him he didn't need to explain to everyone why he wore them.  He just smiled and explained that he wanted them to understand.   

This week we had my niece and nephew come stay with us from out of town.  Coincidentally, my oldest son was on vacation with a friend and her family.  That left me alone all week with my youngest, a five year old and a one year old.  In an earlier conversation with my youngest son, I had stressed how much I needed him to be the big brother while his cousins were visiting.  I was going to need his help.  That meant no meltdowns, no obsessive tantrums.  He was going to have to keep it together.  Wow, did he try.  I could physically see the effort he put into being the big kid.

On Monday, after a busy morning, he became very over-stimulated in the backseat of the car, wedged in between the two car seats, listening to all the noise the little ones were making as they sang and fussed.  In the rear view mirror, I could see him start to get worked up.  Usually, this situation would have resulted in a meltdown.  Instead, he simply buried his head in his hands and silently started to cry.  I was heartbroken but also very proud.  He was holding it together because I had asked him to be the big kid.  When I explained to my niece why he was crying, he nodded his head and simply said "yes".

As the week went on, the kids played very well together.  They compromised.  They problem solved.  Until today.  Today there were tears.  Today our son finally broke.  Our oldest son was back home.  My husband had the day off.  Our youngest was extremely tired, and he was no longer the big kid in the house.  An argument over who would sit in a particular seat caused a meltdown.  He shut himself in the closet.  It was one of those meltdowns.  To his credit, he was able to pull it back together to finish the visit successfully.  It ended on a very positive note.  He amazes me with his strength.  He blows me away with his resiliency.  

The biggest lesson he taught me this week was that I still have a long way to go in coming to terms with who he his and who he can be.  During his meltdown, I had a VERY strong emotional reaction.  It made me SO angry.  I couldn't believe how angry I felt inside.  When things had settled and I had a moment to analyze my emotional reaction, I was very surprised and even disappointed with myself.  

I had spent the week with my niece and nephew who are so bright and fun and "normal".  It is tiring to take care of children that age but there is no real effort to it if you are used to raising children.  They were so easy.  So normal.  All week, my son had tried to "be normal".  When he failed and showed himself to be not so normal, I resented it.  It angered me.  Why couldn't I have that normalcy?  

Wow.  We've come so far in working with him; recognizing him for who he is; and trying to bring awareness to people about children with developmental issues like our son's.  To have that strong emotional reaction to such a normal event in our lives, to have it blatantly evident that such events are  NOT normal in other people's lives, hurt.  Today my son taught me that I still have a long way to go.  I need to embrace his love of life, his openness to new people and new experiences.  I need to embrace his desire to succeed even if it's in steps, not leaps.  Maybe I even need to cry and mourn when things go wrong.  Life isn't perfect.  We are perfect messes.  But there can be great joy in that journey and in that growth.

My son keeps my humble.  I am humbled by his grace.  I am humbled by the beauty of who he is.

To New Parents of a Child With Special Needs

To those of you just starting on your new journey with a child with special needs, I've been where you are.  I've walked in your shoes.  Looking back, there are many things I wish I had known.  Hopefully my experiences can help you side step some of the pitfalls that we encountered along the way.

(1) Listen carefully to the doctors and professionals - 

If you are in the early stages of your journey, you are probably overwhelmed, scared, and seeking answers.  It can be hard to really hear what the professionals are telling you.  We discovered that when meeting with specialists, it is better for two of us to attend the appointment.  If one of us can't get off work, we try to get a member of our "inner circle" to go with the one of us who can.  Two ears are often better than one pair.  Sometimes we interpret or remember symptoms, experiences, or information differently.  The specialists get a better picture of what is really happening with our son when they have complete and accurate information.

As you listen to those professionals, take notes.  Keep a notebook or journal.  Write down the name of everyone who speaks to you.  What did they say?  What did they diagnose?  What did they prescribe as treatment?  What is the next step?  Who do you call?  Will insurance cover this?  Who do you contact to confirm appointments, insurance, or information?  Who is your first contact if you have questions or concerns?  A notebook is your go-to-source of information.  It can be your reminder list of questions/concerns that you want to address with the professionals.  It will be your reference source when you get home and feel overwhelmed and forget everything they told you at the appointment.  It can be your list of follow up questions and concerns for the next appointment.

(2) After an appointment, clarify what was said and your general impressions

Specialist appointments can be a long drawn out affair that leave you exhausted and a bit in shock. Others are are a whirlwind, get you in and get you out scenario.  Regardless of what kind of appointment you experienced, it is important for you to share your impressions.  What did they say?  What were you told?  What were your impressions?  Do you agree or disagree with the information you received?  This is a really important step because it helps both of you to clarify the experience that you shared.  It helps to ensure that both of you clearly understand what was said and what you are to do next.  This is also a great opportunity to share how you are feeling about the experience.

(3) Listen carefully to yourself and your instincts

You know your child better than anyone else.  TRUST YOURSELF!!!  You know when your child is happy or unhappy.  You know when your child is healthy or sick.  You know when something is working and when it isn't.  The worst mistake I made through our journey with my son was doubting myself and my instincts.  The few moments I feel like I let him down were when I didn't listen to that voice inside and act as an advocate to push for what I knew was right.  Fortunately, I learned from those mistakes.  I listen to what the experts tell me.  They are highly educated and experienced.  I respect that.  I also recognize that I am the ultimate expert in my son's life.  No one will ever know him better than I do.  Learning to trust myself and be an advocate for what needed to be done has made all the difference.  

(4) Become an expert on your child and his/her condition

In the day and age of internet technology, it is easier than ever to educate yourself on a topic.  When the professionals give you a diagnosis or mention a treatment, google it.  Research it.  Read everything there is to read on the topic.  ASK QUESTIONS.  If you don't understand, ask more questions.  I will caution you to use vetted sources of information such as John Hopkins, The American Cancer Society, local universities and colleges.  Run away from internet extremists and dramatists.  They only add to your anxiety and muddy the waters.  Become an educated expert on your child.  The professionals will quickly learn to respect you and value your opinion.  

(5) Make time for your spouse or significant other

One of the worst mistakes I made along our journey was assuming that my husband and I could pick up where we left off before our son was born.  He had to be our number one priority.  We came so close to losing him.  He became all that mattered.  Unfortunately, marriages don't thrive through neglect.  As we focused almost exclusively on our son, we started to drift apart.  We started to see things differently.  We quit working as a team to make things work for our son and for our family.  Our tunnel vision almost cost us our marriage.  That probably would have cost us our son.  Raising him is not a single parent endeavor.  It takes a team.  We had to work as a team.

Fortunately, we woke up before it was too late.  We recognized what was happening and what was at stake.  We started to make time for us.  Not long expensive, romantic get-aways.  Not roses and candle light and fancy meals.  When you have a child like ours, who really has the time, energy, or money for that?  Instead, we committed to talk one-on-one to each other a little each day.  We try to go out to dinner at least once a month.  When a new movie comes out that interests us, we try to make a movie date.  Sometimes we just go for a nice walk together.  The point is to make time to recognize that you matter to each other.  Utilize your resources.  Find those in your inner circle that will cover for you for an hour or two.  Learn to trust that others can also do for your child.  Learn to trust others.  Give up some of that control.  Your marriage will definitely benefit.

(6) Enjoy the journey

If you are in the early stages of your journey with your child, this probably makes you want to snort in derision or cry your eyes out.  I understand.  I've been where you are.  Seeking a diagnosis.  Looking for answers.  Praying your child will live through the next year.  Looking at an uncertain future.  Hoping you're up to the challenge and sure that you probably aren't.  What you are facing isn't fair.  You didn't ask for this.  You just want things to be "normal".  I know.  I've been there.

I can also tell you nine years down the road that it gets better.  You are up to the challenge.  What you are facing now will make you stronger.  It will make you better.  You will find joy where you never expected.  There is beauty out there that you never would have seen.  Your heart will be touched with love that you didn't know you were capable of.  

Find your joy.  Find your beauty.  Find the very best you... and trust yourself.

Vigilance

Having a child with special needs requires a heightened level of awareness and vigilance.  All children need supervision and parental guidance.  Having an active older child, I am well aware of the dangers children can find their way into.  There is a different level of diligent supervision needed for children like my youngest son.

Playground equipment has been a source of anxiety for me since our son started school.  His gross motor delays, his impulsiveness, his failure to focus on the task at hand, and my inability to be present to supervise his activity has given me more than one sleepless night.  In spite of my concerns, he has managed to play and have fun with his friends in relative safety.  There have been a few falls or accidents each year but none to serious.  Today, I got the call that he had fallen off of the climbing equipment and landed on his back.  He was checked and sent back to class, only to return forty-five minutes later, crying and saying that his back hurt.  When the nurse relayed this information to me, I told her I was on my way.  Our son rarely complains of pain.  He doesn't seem to recognize pain to the same degree that you and I may.  If he is crying and stating he is in pain, it must be bad.

Thankfully, x-rays showed that there were no fractures or broken bones.  His lumbar/thoracic region is inflamed and bruised.  He is tired and very sore but relatively unharmed.  Ironically, accidents like these are not the concerns that usually occupy my mind.  It's the day-to-day, mundane issues that distract me and fill my mind.

When you have a child with special needs, everything requires planning, thought, and preparation.  When I pack his lunch, I'm considering if his fine motor delays will impact his ability to eat his lunch successfully without him making a mess of his face and his clothes.  I've experimented with different drink containers to find the one that makes the least mess but seems the most age appropriate for a boy of nine.  The invention of squeeze tube yogurt and applesauce is a true blessing for a child that spills spoon fulls of food down the front of his shirt.  When making his sandwich, I carefully gauge just how much peanut butter and jelly is just right to not squeeze out and make a mess but still tastes appealing.  

Preparing for picture day at school means choosing a shirt with just the right pattern that will hide any food stains that he may get on his clothes before they take his picture.  If you don't have a shirt that fits that criteria, it means packing a second matching shirt that he can change into before going for his picture.  Picture day means rehearsing with him the need to make sure he washes his face after breakfast and/or lunch before going to take his picture.

There are little moments in every day life that I used to take for granted.  Most parents do.  Now I don't.  Vigilance keeps our son safe and helps him to fit in with his same age peers... Most of the time.

I also recognize the blessings that we have been given.  Our son needs vigilant supervision because he can walk, run, jump.  He needs supervised when eating because he has the ability to feed himself.  I plan his medicines and their distribution to prevent asthma flairs and illness but my son doesn't need medicines to keep him alive.  I don't need to change GI feeding tubes or colostomy bags.  My vigilance is to make his life better, more normal, more age appropriate.  We are blessed with all that our son can do independently.  Spills and accidents are a wonderful, unfortunate side effect of an active, healthy, growing boy.  Thank you God for that growth, development, and progress.

A Day in the Life of the Twirling Tornado

Today is one of those days.  Our son woke in one of his full blown, manic, obsessive moods.  Days like these are "managed".  All we can do is hope to channel his energy into positive directions and hang on for the ride.

I woke up before our alarm went off this morning to the sound of someone rummaging through my bathroom vanity drawers.  No question.  I knew who was doing the rummaging so I called out to my youngest son and asked him what he needed.  He appeared beside me, completely dressed and ready for church.  Instead of answering me, he launched into an animated conversation about his outfit and the fact that he just needed socks and sneakers and he was ready to go.  When I told him he looked very handsome but he needed to get a bath, he got very upset with me and left the room.  He never closed the vanity drawer, retrieved what he wanted, or completed that thought pattern.

We finally got him into a tub and started that process.  While laying out his towel and gathering his clothes to redress, we discovered he was wearing an old pair of old pants that were too tight and no underwear so we found a clean pair of underwear and switched pants.  While dripping wet, he declared that he wanted french toast sticks and sausage for breakfast.  As I went to work making coffee and starting his breakfast, he bopped around and weaved in and out attempting to "help".  I finally told him to take his milk to the table and sit down.  He sat for two seconds before popping back off to wander off on another train of thought.  Knowing we wouldn't get anywhere soon with him as he was, I called him out to take his medicine.  We were going to need all the help today that we could get.

In the living room, on the coffee table, I discovered a quart size Ziploc bag labeled "Easter Gift Bag".  In it were pieces of paper in different shades of blue.  In addition, I also found a bowl full of the same shredded paper.  Each piece was labeled with the name of someone we knew and the word "stinks".  I thought I knew what I had discovered but I had no idea what it was for.  Our oldest son had babysat the night before so my husband and I could go to the movies and supper.  When we called to check in, he told us things were going well.  Our youngest was fixated on tearing up pieces of paper.  He told us he wasn't messing up anything else so he gave up trying to get him to stop.  He figured paper shredding wasn't that big of a deal.  We agreed and told him to call us if he had any problems.  He said they wouldn't.  They were just hanging out.

When I found last night's shredded paper, I still couldn't discern it's use so I asked him what they were.  Unfortunately, I had gathered all the shreds of paper into the bag.  This set him off.  He launched into a crying, yelling fit that I struggled to interpret.  When I finally got him to slow down and explain why he was so upset, it sort of made sense.  He was planning an Easter Sunday get together.  The shreds of paper were a game.  Each person would pick a piece of paper.  If he/she drew out his/her own name, that person would then need to drink a hot bowl of soup in one minute.  His mood lifted and tears melted away as he explained his Easter Sunday activities.  He soon began to manically launch into a non-stop fury of words about Easter Sunday and this party that he was planning.

By the time we got to church, the combination of his medicine and the twenty minute car ride had helped to relax him to such a degree that we got through the service with very few problems.  He even conducted the choir from a seated position instead of standing and proudly waving his colored pencils in the air as he often does.  We had a small round of tears when we asked him to wait a minute to go down to children's church.  He was convinced that that minute was going to make him late and brought on the tears.  He was able to calm down and move forward.

We stopped at the grocery store on the way home for milk and bread.  He wanted to come along because he wanted a chocolate milk.  I told him he could come in with me if he didn't ask for a lot of stuff and stayed with me.  He did and kept his word.  He also bounced, bopped, danced, and boogied his way through the store.  We did okay.

Back at home, under our bed, my husband discovered a plastic coffee can labeled #2.  Inside was a plastic ginger ale bottle with a paper rolled up and tucked inside.  The lid of the bottle had been taped shut.  When questioned what this was, he explained that it was the instructions for his wedding.  He then excitedly ran to the corner kitchen cupboard and declared "There's another one!"  Tucked in the back of the cupboard was a duplicate coffee can labeled #1.  He put them both back where they were and the topic was effectively ended.

Eating a meal with our son is always challenging.  Sitting still long enough to finish a meal rarely happens.  It often takes several rounds of reheating the same plate until he completes the whole meal, not because he doesn't want the food, or because he is too full.  It's because he can't sit still long enough to finish.  He also struggles to eat with his utensils and not his fingers.  A meal involves multiple reminders to use a fork.  Use a spoon.  Use a napkin.  Don't wipe your mouth on your shirt.  Don't pull the ice cubes out of your drink.  It can be frustrating for us all.  Today was no exception.

When he became exasperated, he started searching for his list he had started before church.  Our son can become fixated on "lists".  Lists of people to invite to parties.  Lists of people that he loves.  Lists of people that have upset him or offended him in some way.  Lists of teams for games.  Lists of musical productions that he is planning.  The list of his lists is unending.

From there, he decided that he was going to go out in the yard and pick up dog poop to prepare the yard for the Easter egg hunt.  We explained that Easter was still two weeks away but he was more than welcome to just go out and play.  Next thing we know, he is coming down the steps with a backpack and the intention of going out to pick up dog poop.  We convinced him to put on muck boots and a coat.  He found a pair of disposable latex gloves and put those on.  We also convinced him to use a garbage bag without the backpack.  Backpacks and poop do NOT go together.

At dinner last night, my husband and I reflected on our youngest son.  We are amazed by how his mind works.  We are scared of how his mind works.  We are amused by his mind.  We are frustrated by his mind.  In the end, he is who he is.  His mind is a jumble of chaotic creativity.  He is bursting with ideas and enthusiasm.  Our job is to help him learn to manage how his brain is wired.  It will never be boring.  That's for sure.

Time to Medicate? Why You Should Never Doubt Your Decisions

The decision to place our youngest son on Attention Deficit Disorder (ADD) medicine was not something we took lightly.  It was a decision that we fought for a long time.  We used behavior management techniques, dietary modification, and many of the other popular methods for trying to help a child cope with ADD. In spite of our best efforts, our son ultimately made the decision for us.

As I have discussed in previous postings, it was a series of events that led us to make the decision to place our son on ADD medication.  His frustration with himself and his inability to focus and adequately express himself to others resulted in a very angry child.  The final straw was the day I walked into the kitchen and found my son bleeding all over because he had attempted to cut up an apple for a snack rather than come and ask for help.  His impulsive behavior was becoming more and more dangerous as his gross motor and fine motor skills improved.

It took awhile to find the right medicine that worked for him as it was intended.  We were trying to treat ADD symptoms in a child that had complicated neurological issues that could not be explained simply as ADD.  Ultimately, we found a medicine that didn't sedate him, didn't alter his moods or personality, but still offered a degree of impulse control.  The medicine hasn't given him the degree of focus needed to help him get through a school day as well as the school had hoped but our biggest concern was being addressed.  The medicine helped him slow down his thought process long enough to help him curb his impulsiveness and reduce the risk he often posed to himself.

Despite the gains we have made, I have often questioned our decision.  You hear and read about those parents that are able to manage their child's ADD symptoms without the need for medicine and it makes me question if I am working hard enough.  It makes me question my motivations.  I try to always be honest with myself and my intentions.  I have a fairly clear conscience when it comes to my son.  His best interest is almost always my first priority.

Tonight, I was given clarity and resolution on this issue.  After giving our son a haircut, I put him in the shower and went out to the living room to continue working on a test I was writing for my students.  In a matter of minutes, he appeared, dripping wet and bleeding all over.  I quickly dried him off so I could see where he was bleeding.  He told me that he was trying to shave and cut his thumb with the razor.  Thankfully, he had removed a swath of skin from his thumb but didn't appear to be bleeding from anywhere else.  We applied pressure to the wound and then tightly bandaged it to stop the bleeding.  Our next step was cleaning up the trail of blood that covered the bathroom, vanity drawers, toilet paper roll, towels, and bedroom floor.

His medicine had worn off in the early afternoon so he was back to "himself".  Because we know he is impulsive, we keep all razors and sharp objects up out of reach.  He had climbed to the ledge up above the shower to get a razor.  He then used baby oil gel and attempted to shave his legs.  When he sliced his thumb, he hopped out of the shower, dripping water everywhere, and attempted to stop the bleeding with toilet paper.  When he couldn't stop the bleeding, he ran to the vanity and attempted to get band-aids to cover the slice.  When that failed, he came to me in a panic.

While processing the situation, I questioned if he was bleeding anywhere else.  Where had he used the razor?  For a moment, he forgot how upset he was and proudly said "I shaved my legs.  Feel how smooth they are."  He gave me a big grin until he remembered that he had hurt himself and was upset.

I felt absolute clarity in that moment.  This is why we put him on the medicine.  His brain needed assistance to slow his thought process down enough to let him think through his ideas, impulses and decisions.  When I look at where we were two years ago and where we are today, I am clear that we made the right decision for us.  The medicine has given us the ability to breathe.  Prior to the medicine, we were supervising an eight year-old with the same level of supervision that you would give a three or four year-old.  We were hyper diligent to the point of controlling.  The medicine has helped him start to develop a degree of self regulation that is more age appropriate for a boy of nine.  It has allowed us to have a sense of confidence that we can allow him to take chances and begin to self regulate without us hovering over him.  That growth is needed.  It is to be celebrated.

I hate these moments that put the fear back in my mind because it's always in my heart.  On the other hand, I'm grateful that we have made enough progress that I see it as a bad moment and not a sign that things are not going in the right direction.  Instead, tonight's episode showed me how much progress we have made and where we were, how far we have come, and where we are going.  I am grateful for moments of clarity.  As always, I am grateful for God's grace.

What Gets You Through the Tough Times?

I have an amazing life filled with beautiful people and innumerable blessings.  Many things in my life also haven't gone as expected.  I couldn't be more grateful for those unforeseen circumstances because without them I wouldn't be who I am today.  Those trials have made me stronger as a person and more faithful as a believer.  There are two guiding truths that I try to live by.  Your attitude and your choices help determine your circumstances.  God's grace gets you through those circumstances when you can't do it on your own.

Your perspective on the people and situations that you encounter often determines the final outcome.  Truth be told, there are days I don't know if I can deal with all that life has given me but I look at it this way, what's the alternative?  Give up?  Give in?  Quit?  Walk out?  Walk away?  Those are choices.  Doing nothing is a choice.  Standing strong.  Fighting back.  Educating yourself.  Working hard.  Those are choices.  I choose the positive choices whenever possible.  That's where attitude comes in.

I have bad days.  You've read about them in this blog.  There are days I feel sad, beat down, angry, let down.  But my attitude determines what I do with those feelings.  I refuse to let those feelings influence my decisions.  I choose instead to use those feelings to fuel my determination in a positive direction.  My attitude is that families stick together.  Period.  Kids are not disposable.  Period.  Marriages are not temporary.  Period.  At times, life can be unfair and downright rotten.  Get over it.  Move forward.  If something is wrong, fix it.  Don't play the victim in your life.  Get angry and find a solution.

These aren't empty words.  Those that know me, know that I stand by them.  Some of you know some of my past but very few know all of it.  Those that know me well know that I will overcome anything you put in my path.  Anything.

Why?

God's grace.  It's not my strength.  It's not my determination.  I'm not that strong.  I am weak and flawed and screw up royally.  God's grace gives my strength when I am weak.  He gives me answers when I have none.  He's the voice in my head giving me pause or pushing me forward.  I'm not that strong.  God is.

My ferociously strong autistic girl stood before me, bellowing her rage and injustice at the world.  I felt my anger rise to the surface.  At that moment, a little voice inside told me "Take a breath. Breathe deep."  I offered up a silent prayer Let me say the right words.  Let me know the right course of action.  Not knowing where the words came from, I calmly heard myself say "Please stop yelling at me.  I love you.  You know I'm not what has you upset.  You know what the real problem is.  Stop yelling and talk to me."  She stopped, threw her arms around me and said "I love you.  I'm sorry." and started telling me that she's terrified because she's being transferred to a new program soon and she doesn't know how to handle it.

A few short hours later, I walk into my home to see my son ready for battle.  His body tight with anger, eyes shooting messages that I don't understand.  I can see where this is going and it's not anywhere positive.  I'm tired.  I've already put in a long day.  Can't I just come home to a loving family, a peaceful evening?  As he starts to launch into a fit, I hear that quiet voice inside guiding me "Take a breath.  Breathe deep."  I hear myself say I love you.  Please stop yelling at me and tell me what's wrong. 

I always regret the moments when I choose to ignore that quiet guiding voice inside because I'm tired or frustrated or just sick of being the bigger person.  Those moments never end positively and I'm always left with regret.  Life's trials teach me that I need God and his grace because I'm not strong enough to do it on my own.

How do you deal with life's trials?  What sees you through the tough times?  Many blessings to you and yours.

Allowing Growth to Happen

Because I am single sided deaf and tend to sleep on the side which has my good ear, I often don't know that our son is awake until he comes to waken me, or a loud noise penetrates my pillow.  That was the case this morning.  I was startled awake by a noise that I quickly realized was the sound of plates being put gently (please interpret sarcasm here) into the kitchen cupboard.  This sound effectively launched me into full consciousness.  I called to our son and asked him to come see me.  As soon as he entered our bedroom, I could tell by the gleam in his eye and the telltale vibration of energy coming off of him that he was in one of his excited, fixated states.  He was a man on a mission.

I took a deep breath and asked him what he was up to.  He told me that he was unloading the dishwasher for me and making his breakfast.  When I started to get out of bed, he quickly exclaimed "I only have the easy stuff to do now.  The spoons and forks and knives."  With that pronouncement, he quickly scampered out of the room.  I quickly got around and went out to see what state the kitchen may be in.  To my pleasant surprise, things looked pretty good.  He had streudel in the toaster and was pulling peanut butter out of the cupboard in his jittery, manic state of unrestrained happiness.  I told him I would finish getting his breakfast around if he wanted to finish putting the silverware away.  He spun around and grabbed the milk out of the fridge, then spun back around and started putting the silverware where it belonged.  Full on energy burst.  Woohoo!

Because his energy can sometimes feed my own, I took a deep breath and took stock of the situation.  He had used a step stool to put the high items away but had even put that back where it belonged.  Nothing was broken.  For once, nothing was spilled or strewn about.  The kitchen looked pretty good.  As he spread the icing on top of the peanut butter I had spread on his streudel, he looked at me and said "I wanted to do something for you because you do so much for me.  You pack my lunch and cook my food.  You're always doing stuff for me.  I wanted to do this for you."  Wow.  Total heart melt.  

This small morning interaction brought home several very important points for me.  The first is that he does see and recognize what we are doing for him out of love.  Sometimes it doesn't feel that way when we are battling over completing homework or cleaning up after himself.  It's nice to know that he does appreciate us.  The second is that he has the empathy skills to desire to do something back for someone that does for him.  So often, it seems as if kids these days are lacking empathy and compassion for others.  We've tried really hard to instill that in our children. It was nice to see the evidence that our hard work may be paying off.  Finally, my little guy isn't so little any more.  He is growing up.  Maybe I need to stop working so hard to protect him from failure and rejection and let him spread those little wings and start to experiment with flying.  It doesn't mean I won't be there to help him when he stumbles and protect him when there's danger.  It just means I need to let him make mistakes, learn from independent experiences, and experiment with who he is and who he may become.  When we came so close to losing him in the past, it's hard to take that step back but independence and self-sufficiency is our ultimate goal.  I need to let my little bird start to fly.

Things That Make Them Go Hmmm?!?

Tonight is more of a status update than anything else.  Our son had his bi-yearly neurology appointment yesterday.  These appointments are meant to review his medical conditions; track his developmental progress; gauge the current effectiveness of his medicines, treatments, and therapies; and discuss any issues that have developed or worsened over the last six months.  If you've been reading recent blogs, you know that we had some issues to discuss.

Our son's specialist is an award winning pediatric neurologist who is doing some cutting edge research in genetics and its impact on kids with developmental issues and autism spectrum disorders.  He's been in our son's life since he was two years old.  We are all very comfortable with him and his opinions.  Even better, he's a really great guy who loves his kids and sees them as individuals, not a disorder to be treated.

As he typically does before coming in to meet with us, the doctor reviewed our son's file and any documents that we had brought along for his benefit.  These generally include feedback from his teaching team, the most recent Individualized Education Plan (IEP), recent therapy case notes, recent testing assessments, and a couple parent surveys he has us complete prior to the appointment.  With that information fresh in his mind, he comes in and generally gets a feel for how we are feeling about our son's progress.  From there, he does a neurological exam, a physical exam, and generally just interacts with our son to see for himself how he is progressing.  We never feel rushed by him or like we are taking up too much time.  After the exam, we generally ask questions and he reviews the options for changes that we may or may not want to make for our son's treatment.

I hope you're getting a sense of how thorough and invested this man is in what he does.  It's important that you understand that before I continue with the story...

From the very beginning, our son has been a puzzle that no one can solve.  No one can tell us why he is the way his is.  They know it is neurologically based but he doesn't fit any syndrome or disorder or "spectrum".  A misdiagnosis (with a different neurologist) sent us off on a wild goose chase to the Children's Hospital of Philadelphia with the warning that they were going to need to split our son's skull and insert spacers to allow it to grow properly.  I was never so happy in my life to receive a misdiagnosis!  Fortunately, that surgery was not required.  At times, it feels as if we have been to every department and met every specialist at Geisinger Medical Center as we've searched for answers.

Somewhere along the way, we've learned to trust our instincts and began to openly advocate for what we wanted for our son.  It has made a world of difference in his treatment and in his development.  At our most recent specialist appointment, we again brought up our son's strange developmental cycle that always seems to involve a simultaneous regression in his speech; an increase in his drooling and clumsiness; and an amazing increase in developmental skills or abilities.  Those within our circle of friends and family can attest to the fact that this pattern has been a consistent part of his development from early on.  When we again brought this up to his doctor and mentioned the current severity of his blocking and stuttering, paired with the amazing burst of development, his answer surprised us.  But only a little.

When an award winning doctor looks you in the eye and says "I don't know why this happens.  I'm not experienced with this.", it's a little shocking.  Apparently in his experience, a regression in development tends to be universal.  He feels it is quite unusual for a child to experience a significant regression and also experience significant bursts of development in other areas.  He can't explain why this is happening because he hasn't experienced this before.  Several specialists in this field meet regularly to eat, chat, and discuss unique or unusual cases and get feedback from their peers.  Our doctor promised to bring up our son's situation at the next luncheon.

Several things became very clear to me at this appointment.  (1) If a respected specialist in his field can't explain why our son is the way his is, why should I allow myself to become frustrated and sad when I don't have the answers.  (2) Our son is a unique and amazing individual made in love, with love, and for love.  As his doctor stated, "He's just the nicest kid.  I bet everyone just loves him."  Yes.  They really do doc.  (3) We need to give ourselves credit for what we have accomplished with our son.  We've asked questions, researched, advocated, and challenged.  He continues to make progress though the challenge of drooling and stuttering and the inability to speak.  He perseveres and feels good about himself and who he is as a person.  That's a lot to celebrate.  Finally, we don't have the answers but I see God in every step of this journey.  He has been there from the beginning.  Why do we experience bursts of development through the deepest of regressions?  Because God knows I need the light.  He knows I need to see a sign that things will get better, will improve, will change.  It's His gift to me.  It's a gift to us all.  Our son is a gift.  If you've met him, you know what I mean.

New Year Resolutions

I'm not really one for making resolutions for the new year.  If I see a problem, I attempt to resolve it.  By nature, I'm a "fixer".  I don't like chaos or disorder or uncertainty.  Knowing my tendency to attempt to control chaotic events in my life, I sometimes think God looks down and says, "Oh daughter, when will you learn to give it to me completely.  I've got this."  Because I refuse to learn the lesson, it keeps being taught.  Like a petulant child, I want to stomp my foot and scream "But I hate this lesson!"

Our youngest child is often the tool most utilized when attempting to teach me to turn it over to the Lord and let life play out as it will.  His unpredictable developmental cycle is a constant source of worry, concern, and frustration for me.  Just when it seems like things are stabilizing, his impulsiveness seems more in control, his health has improved, his agitation and frustration has minimized, the wheel will turn and a new laundry basket of issues will crop up.  I know that given time and diligence, these new issues will resolve themselves.  They always do.  Yet, I feel anxious.  Worried.  Scared.

Over the last week or so, his stuttering has reached the worst level I've ever seen it.  He is blocking to the point that his mouth moves, his muscles quiver, but nothing comes out.  It is at its worst when he's tired.  He doesn't seem to get frustrated or angry.  It doesn't stop him from trying to express himself.  But it worries me.  I don't know why it's suddenly so bad.  What triggers it?  Why does it come and go indiscriminately?  How will it impact him socially?  Will it make him a target at school?  Will it affect his self image and confidence?  Will he ever out grow this?

I have to have faith.  I have to believe and put it in the Lord's hands.  I know that.  I also know that when his language skills regress, other skills are developing and improving.  It's his pattern.  It's his normal cycle of abnormal development.  Lately, we've seen an increase in his ability to delay gratification.  When asked to wait (to speak, to get something, to do something, etc), he has been able to do so for short periods of time.  This was previously absolutely impossible.  He had no impulse control to delay that urge to meet his needs.  He has recently had an increased social awareness of the impact of his behavior on himself and his peers.  It is still a skill in development but it is a step in the right direction.  Previously, he had no recognition that his behavior/choices had an impact on others.  His math skills have progressed in a positive direction.  He seems to have an increasing awareness of numbers and the relationship between them.  His number sense was limited until recently.

As his mother, I need to have an awareness of where he is developmentally so that I can help him to reach his next goal and his full potential.  As a child of God, I need to trust that the Lord has this.  He will see us through whatever stumbling blocks are thrown in our way.  As my son's primary cheerleader, I need to celebrate his new skills and accomplishments.  I need to keep him working towards becoming the best HIM that he can possibly be.  My job is to help our son (and myself) remember that he is a child of God and was created in His image with His purpose in mind.  There is a bigger plan than I can see or imagine.  We will get there together some day.  I pray that I've learned to relax and enjoy the journey somewhere along the way.  I guess that wouldn't be a bad resolution to make.