What a Journey It Has Been So Far

  I am going to try blogging my son's and our family's experiences with an Autism Spectrum Disorder and Atypical Cystic Fibrosis presenting as Chronic Pancreatitis.  It has been a long road already and it keeps on twisting and winding.  Let's start at the beginning.  I am a planner.  I like predictability and I have had to learn to be more flexible.  When I was pregnant with Shade, our one and only child, I read every pregnancy/parenting book and article I could get my hands on.  I scoured the internet for advice, birth stories, and what to expect at each stage of pregnancy and during infancy.  I made lists.  I planned.  It comforted me to feel prepared for what would happen next.  The problem is that pregnancy, birth, and babies do not always follow a plan and you can never really be prepared for it all.  I expected to have a pregnancy with no complications followed by a painful, but uneventful delivery and successfully breastfeed my baby until at least 6 months old.  What I got was gestational diabetes which made me high risk, a birth by c-section, and a week of unsuccessfully breastfeeding my baby.  I was being taught early on that this whole parenting thing WILL throw you curve balls.

I didn't realize it at the time though.  Instead, I continued to plan and prepare for Shade's future.  I signed up for emails that would tell me what to expect for each week of his early life.  Each one would describe what a typical child would do.  Once again, I planned.  I talked to Shade often and not just in a baby voice, because that is what the books and emails and articles said to do.  I gave him a wide variety of toys to play with and read to him because that is what the books said to do.  I tried to put him on a sleep/eat/play schedule because the books said to.  I made homemade baby food with healthy ingredients because books and articles said to.  I tried to do everything right, but Shade seemed to have his own plans.  When he didn't respond to any of these things like the books said he would, I felt like a failure.  Why did he respond so differently?  I was depressed.  I blamed myself.  I thought that I must be doing something wrong or that I just expected too much from him. As a first time mother, I really had nothing to compare him to except the criteria in those darn books!  I kept feeling like something wasn't right, but his doctors didn't seem concerned and neither did family members. I figured that others knew better than I did. When he was 6 months old and not attempting to crawl or to even sit up on his own, I was concerned.  His doctor just said that babies do everything at their own speed and to just keep an eye on him.  I also expressed concern about his eyes still crossing frequently.  Weren't babies supposed to outgrow that?  His doctor referred us to a pediatric opthalmologist and long story short, he had surgery at 9 months old to correct his crossed eyes and unblock his tear ducts.  He started wearing an eye patch at this age to help correct a "lazy eye" as well.  He still at the age of 8 sees the opthalmologist regularly, wears glasses, and receives an eye drop and wears a patch once a week.

Our concerns about Shade's development came to a head when he was about 15 months old.  He wasn't really talking. He didn't seem to know his name. He had finally started crawling at 12 months and would sit up on his own, but preferred to lay on his belly.  He would "cruise" around holding onto the furniture or the walls or a person, but would not make any attempt to walk unassisted.  He didn't play with most of his toys, but was very interested in a select few.  Mostly he liked toys that made noises and flashed lights and had lots of buttons.  He also would not point at things of interest, but would take our hand and make it point at what he wanted us to notice.  He was really into letters and numbers and shapes and colors and was always wanting us to name them for him.  When we expressed these concerns to his doctor, we were referred to First Steps which is the early childhood intervention in our State.  They came to our house and evaluated him and diagnosed him as having global delays.  They also were the first medical professionals to suggest possible Autism.  He started receiving Physical Therapy, Occupational Therapy, and Speech Therapy at the age of 17 months old.  They suggested we have him evaluated for Autism at Weisskopf Child Evaluation Center in Louisville, Kentucky.  We weren't able to get an appointment for quite some time and he was 2 when they first evaluated him.  They diagnosed him as quirky and eccentric and as having receptive and expressive language deficits, central nervous system dysfunction, and anxious temperament.  They said that he was still very young and to bring him back when he was 5.  When he was 3 he aged out of the Early Childhood Intervention and started pre-school so that he could continue to receive his therapies.  He also started reading at that age.  He pretty much taught himself by constantly asking us what each letter was and what sound it made.  He had his own way of asking, of course.  He would point at a letter and say "dis" in a questioning tone, meaning "this" and we would tell him the name of the letter.  Later he would point and say "what dis say" and we would tell him the sound the letter made.  Then he would ask us the same question, but he would want us to repeat the question back to him so that he could answer.  We already knew he was smart, but he just kept surprising us with his intelligence. 

 It killed me to send him to school so young, but he needed to continue his therapies and it was good for him to be around other children.  He has been in public school ever since and we have had triumphs and struggles, but the experience has been good for him, overall.  We took him back to Weisskopf when he was 5 and in the summer of 2010 he was officially diagnosed as having an Autism Spectrum Disorder.  Nothing really changed in his life because of this, but we were relieved to have a diagnosis.  Things went fairly smoothly for a while.  He had always been healthy despite his extremely picky eating and limited food choices.  He had the occasional cold or virus, but nothing serious.  He would have bouts of vomiting like once a year where he would become lethargic and scare us and we'd take him to the ER for fluids, but they would never find anything wrong with him and just assumed it was a virus because it would pass within 24 hours.  

He was growing normally and was actually a little overweight due to his love of McDonald's chicken nuggets and french fries and our tendency to buy them for him because the chicken was the only meat he would eat other than hot dogs.  Then one day in June of this year, he complained of his stomach hurting. We took him to the Pediatrician and he prescribed Zantac liquid because nothing really seemed wrong.  We took him home and gave it to him and he threw up because of the taste.  We also bought him McDonald's after the doctor because he said he wanted it, but then he only ate a few french fries and was done. We decided that he just didn't feel good and thought we'd just wait it out because he wasn't complaining much.  The next day, he still said his stomach hurt and he was starting to act lethargic.  He also refused to eat or drink.  We called his doctor and told them and they said to take him to the ER.  We did and they ran tests and after several hours they diagnosed him as having pancreatitis.  That was the beginning of our pancreatitis journey and I will save the rest of the details for the next post as this one has become so long.   Stay tuned.

Shade at his Kindergarten graduation at the very beginning of June before pancreatitis.  He weighed about 80 pounds in this picture.  As you will notice in later pictures he dropped down to about 65 pounds.