My Family's Journey With Autism -Part 3

This is a series of posts telling my family's journey with autism.  Click here to  read part 1 and part 2.


So, my son was 3 and just was diagnosed with Sensory Processing Disorder and I nor anyone in the tiny town I lived in had ever heard of it.  So, I researched it like a mad women.  I started developing a sensory diet for my son.  This has nothing to do with food, it is a personalized activity plan to help my son stay focused and organized during the day.  We also went to OT, but I had to drive 1 1/2 hours for it and so we only went every 2 weeks.

Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.

Then, in a two week time period, my husband was offered a job in Georgia (we currently lived in Missouri) and I found out I was pregnant!   Both ended up being the biggest blessing, but I was frustrated, tired and overwhelmed.   We have moved about every 2-3 years for my husband's company.  Thankfully, his company hires people to  pack and unpack our home, so as far as moving goes, we have it pretty easy.

Luckily, we were also moving back to a town, we had lived in 3 years before, it was where both my sons were born.  We joked with our wonderful doctor, that we came back, just so he could deliver my daughter.

Weeks after we found out we were moving,  I remembered a unique school called Challenged Child and Friends was located in this town.   They were an early intervention program for children with special needs and the classes were integrated with typical children.   I remember looking at their website and reading they helped children with Sensory Processing concerns and I started crying.  I felt like I was finally going to get support and help.   We couldn't move to Georgia fast enough.  God had provided us with just what we needed!

We moved to Georgia in the summer of 2009.  My oldest was to start Kindergarten and my middle son would start preschool 5 days a week for 3 hours a day.  I finally had a safe, understanding, educational facility that I felt comfortable leaving my child.  For the first time, I did not feel like an outsider, my child fit in, there was nothing he did that shocked the teachers, he had support and I finally had a much need break.  We found out we were having a girl and I was thrilled.   We purchased a beautiful home near my husbands work, so he could be home more and things were starting to look up!

After we got settled, I took my son to the new pediatrician, gave her the low down of my son's health and development history and she recommended going to see another developmental pediatrician.   The waiting list was 9 months, so we made the appointment  and waited.

Right before my daughter was born, my son had been gluten free for almost 2 years.  We started introducing dairy about a year before and saw no change in his development or digestion, however he refused to drink milk and still does to this day.  So, we introduced gluten and again did not see any major changes.  It was a relief to be off such a restrictive diet.  The holistic doctor we were seeing, said, due to my son's digestive problems at birth and the case of Salmonella this made it harder for him to digest dairy and gluten.  Allowing the gut to heal for an extended period of time allowed him to be able to tolerate the harder to digest foods again. This belief was reconfirmed when I read the book, Gut and Psychology Syndrome a few months ago. 

 While we were seeing progress, we still had many concerns, he was still very sensory seeking.   It was exhausting, it was just too hard for him to sit still.  Going to the store would require a 30 min pre-leave sensory diet, so he wouldn't be dis-organized in the store.

He also still struggled with conversations.   Back and forth meaningful conversations were really difficult for him.  He was great at asking for things he wanted or needed, but if you asked him a who, what, when, where or why question, he would often ignore you.  It was very frustrating and it was hard to connect with him.  He was happy and very loving, but it was like pulling teeth to get him to have a conversation with you.  He often would repeat movie lines if you asked him a question or give you a totally off the wall answer.

He was getting speech and occupational therapy, we did sensory diets,  body brushing, therapeutic listening and stayed away from as many artificial dyes, colors and preservatives in our food.  He took fish oil, probiotics and a multivitamin daily.  He never complained and honestly it was harder convincing others why I didn't want him to eat junk food. I have linked articles to these ways of treating behavior concerns, if you want to read more information. 

Most of all during this time period, I made the biggest change.  I stopped feeling sorry for myself and embraced this was our way of life.  The way I envisioned myself as a mother and family was shifting.  I no longer desired to be all Martha Stewarty when it came to birthday parties or with my home, the luxury of free time was not in my hands.   I stopped desiring joining a country club or volunteering for Jr. League, this lifestyle was simply not in my cards.   I became more humble and focused on just making it through another week.  I came to realize I was my children's  most important advocate and teacher and that trumped everything else.

I also saw so many families around me at his school everyday, in much more difficult circumstances.  Children that would never walk or talk and kids with severe learning and behavior problems.   A child in my son's class, was burned from a fire and had no hands or legs.  She smiled and spoke to me every time I dropped off my son.  I started feeling blessed to only be dealing with a child that was impulsive and struggles with conversation skills and sensory processing.

 Every night I went to bed, knowing my son loved me, because I heard the sweet words from his lips and  felt his tiny arms wrap around me in an embrace, not all parents are so blessed. 

Though we still had many unanswered questions, I knew God sent me to this school to be filled with compassion and hope.  It was just what I needed to prepare me for I what our new Developmental Pediatrician would have to say.

Stay tuned for part 4.............

 

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