The Most Common Rare Syndrome You've Never Heard Of

Saturday, April 27, 2013

Cyndy Hartman--Struggles with Behavior Issues

After my husband and I were married our discussions were frequently about children and how we would raise and discipline them.  When we were out and about, we would comment to each other on other peoples parenting styles and how their children were behaving…good or bad.  We had a clear cut image in our heads of how we were going to parent and discipline our children and how they would be model citizens and be courteous and well-behaved in public.

That all changed when we had our first son, Austin, in 1998.  He was intelligent and funny but he was also so energetic and defiant that it became difficult to manage him.  In the years since his birth he has been diagnosed with Asperger’s Syndrome, Sensory Processing Disorder, ADHD, Anxiety, OCD and Tourette’s syndrome.  Our world became very different.

In 2004, we began another new and difficult journey as we had our second son, Blake.  It would not be until he was almost four years old and many health and behavior issues later that we found out that he also had ADHD, OCD, Sensory Processing Disorder and Tourette’s syndrome, however he also something called Noonan Syndrome.

Behavior issues are very common with Noonan Syndrome and by the age of two, Blake’s behaviors were out of control.  We had high locks and chimes placed on all of our doors as he became an escape artist.  There was nothing worse than waking up from a dead sleep to hear the front door chime at 6:00 am, knowing that it was Blake opening the front door making a beeline for the street.  The majority of the time, he was able to make it all the way to the street before I could catch up to him, which was terrifying.  It was difficult to have my boys run away from me in the store or to decide to have a melt down because I told them they couldn’t have a toy.  It was even harder to become the epitome of the “bad parents” we had always discussed in our conversations of how our children would not behave!

The “normal” world that we had envisioned pre-parenthood has now changed to a world of experience, patience and understanding.  We no longer pass judgment on other parents because they may just have a child with behavior issues not bad parenting.  I can’t count the number of times I have had to leave groceries in the store, have packages unsent, errands not finished because my boys could not handle the sensory overload that day. I can’t count the number of times that I have had one or both of my sons have a meltdown in the checkout line and proceed to hit and kick me, bite me and call me names in front of anyone that is willing to watch.

Out of all the mental health and medical issues that my son’s have, I would have to say that the most difficult issue to deal with is the behavior issues that are associated with Noonan Syndrome.  We are currently going to be ordering the fifth pair of eye glasses (in less than a year) for Blake because he has broken all of his other pairs into pieces during melt downs.  We always have to find a fine balance with all of his medications and have to be careful not to give them too early, too late, or forget to give them at all so that we can try and avoid a meltdown.  It’s hard to fathom that even after all of these years, I have not gotten used to the glares, stares and comments from other people because they do not understanding the situation and judge us as parents.  I do have to admit that I still get embarrassed at times because of this too.

It is very stressful to me as a parent to always be on guard, to get ready for the next behavior issue that is coming and to prepare emotionally to go through yet another meltdown without having one yourself.  Somehow I manage (most of the time) because I know they can’t help it and it is my job as their parent to do my best for them.  So I will do it over and over again, as long as they need me to, because they are my children.  I love who they are and despite all of the ups and downs of the behaviors we deal with, I would not change anything about either one of them.

Cyndy has been married to her husband doug for 17 years. She has two sons, Austin (15) and Blake (9). She works full time but in her spare time she enjoys camping, hiking,  painting, arts and crafts, sewing and spending time with her family.

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