Tuesday, March 12, 2013

My Life -- Diabetes & Autism

I originally posted this on November 9, 2012.

My life is complicated.  I've been married for 21 years to a great husband and dad -- I know that makes me a freak of nature!  We have four incredible children.  We own a successful technology company, live in wine country California, and blah blah blah.

What's so complicated?  It all started when our third child (second son) was born.  I thought everything was fine.  As my son grew older I noticed little things that were a bit "off" but I just thought he was quirky.  Little did I know.

As a homeschooling mom I noticed during kindergarten my son was not learning basic skills like his older siblings did.  So began a long journey.  A journey we are still on.

My son was first diagnosed with dyslexia, then clinical depression, autism, and processing delays.  Honestly, the depression diagnosis scared me more than the autism.  It was a crushing diagnosis.

I rallied, contacted our local school, secured services, behaviorists, child psychiatrists, and learning specialists.  I took courses about the educational laws and IEP process.  I prepared for what was coming; or so I thought.

The morning my husband and I were to attend our first meeting with the local school my second child (first son) was very ill.  I went on to the school and my husband took our son to the doctor.  In the school parking lot I received a call from our family doctor.  "Your son has Type 1 Diabetes.  He is very ill.  I am scheduling him for admittance into the nearest children's hospital endocrinology department.  He needs to go immediately." 

I realized in the school parking lot I had to pull myself together.  First I needed to attend the school meeting for my autistic son.  I needed to successfully navigate the meeting and I did.  Afterwards, I broke down in my car.  My world collapsed around me. My dad had died from complications of Type 2 Diabetes. But Type 1 -- genetically inherited, no where in my family or my husband's. How could this be? What did I do to have this happen? Why my boys? Why my family? Why?

That night was stressful and traumatic.  We decided I would drive our son 2 hours south to Oakland, CA to Children's Research Hospital.  They had a place for him and we needed to get there immediately.  My son was barely able to walk or move.  He was lethargic, pale, and gravely ill.  I drove to the city for the first time in the rain and dark, unsure which interchanges to take, where to park, where to check in.

When we arrived my son tested over 600ml.  Normal glucose is 80ml to 100ml.  A few more hours and my son would have been in serious, almost deadly conditions.

After a wonderful stay (the staff was INCREDIBLE) we learned how to give insulin, measure carbs, and address illnesses.  My son loved it there because he could dial the kitchen and get anything he wanted. 

The next few months -- almost year -- was very stressful.  I was losing hair, weight, and sleep.  Managing two children with disabilities pushed me to my limit.

I can say, five years later, our lives are less complicated.  Now the boys are teenagers.  Perhaps our biggest challenge is dealing with teenage boys! 

Perhaps it is better to say our family has adjusted and grown stronger through these challenges.  Our lives are still complicated, I suppose, but we manage.  I am ever grateful for the support inside and outside the family.

I wish strength and happiness to all who face similar challenges.