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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