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!