Counting Down the Days

Mr. C. has been counting down the days until school ends. This past year has been a rough one on him and I am praying that his 8th grade year goes smoother. As far back as I can remember he loved school, then out of the blue the once happy child turned sad and distant. More distant than his norm, I wondered what it was that caused my child's world to suddenly change. Mr. C. did wonderfully in a blended classroom, when he was mainstreamed everything was turned upside down. A well adjusted child who had a decent self esteem became angry, non-compliant, moody and worst of all hated, absolutely hated school.

I looked closer into everything that was happening at school, from his daily schedule to the children he had contact with. When it came down to it, I realized the one aspect of my child's autism was the social component, the importance of it at the middle school grade level was having a negative impact on my child. Mr. C. struggles daily with social interactions with peers, he is more of a loner and that is one of the obstacles that presents itself in his daily life.  From the inappropriate responses all the way to the missed social cues. Frustrated beyond measure from his side and mine. At what point will the educational system grasp that the one major component to education is the one component that my child lacks?

A change was made to my son's learning environment, an effort made by the school district even after being told for the past 2-3 years that this would happen. Shoving the problems aside does not accomplish anything, in fact from my experience it only makes things worse. What it does not do is make the problem go away.   Mr. C. may be counting down the days until the end of the year, I am counting the years until he no longer attends school in this district. When he can go to school without the worry of being bullied because he is different and that he processes the world differently.

Eight days until summer vacation! We have a lot of plans this year one of which is to go to the local zoo, an activity he has enjoyed since he was two. Mr. C. has requested that we also visit the local state parks that are close by. Sounds like a perfectly wonderful summer.

In the Midst of Life

One of my favorite books when I was a little girl was the Velveteen Rabbit. When Mr. C. was little I would read it to him every night and the hope was that he would learn to love reading. He would stop me at the same point every night and ask me to read over again. '

"'It doesn't happen all at once,' said the Skin Horse. 'You become. It takes a long time. That's why it doesn't happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real you can't be ugly, except to people who don't understand.” ( Margery Williams, The Velveteen Rabbit)

 I did and to this day, he still remembers the book. I do not read to him anymore, not like I did but I cherish those little moments. I smile when I think about it and during those stressful moments in life its often enough to calm the storm brewing inside.

I look to God for my strength through this journey, I have moments when I falter though try as I may not to. I am human and I have feelings. I have taught Mr. C. that his feelings are very important and that no one has a right to tell him how to feel or that his emotions are not important.  When life gets too much for me, I turn to God because he is my refuge in all of this craziness of life. He understands above all and even though I have no idea on a lot of things, he does.

Mr. C. is has amazing knack for telling jokes, he has a wonderful smile one that lights up the room. he has dimples on both sides of his cheeks and the only time you really see them is when he laughs or smiles. He doesn't like tags in his clothes, doesn't like the water, is afraid of the dark and glass elevators. Mr. C. likes certain foods and does not deter from his regular diet very much. He prefers Tyson chicken nuggets, hot dogs, chocolate milk, soda, popcorn, apples, grapes, watermelon and french fries. He prefers his vegetables frozen and the doctor said fine to that. He does not eat when its hot outside, as he says "I would like to drink my lunch today."

He does not like anyone in his personal space without fair warning, does not like to be hugged or touched. He prefers distance, sort of reminds me a safe protective bubble. Where no one can hurt him or reach him and I understand that as much as I can. Eye contact has improved over the years for that I am thankful. He is an amazing artist, he loves to draw especially cars. With Mr. C. one needs to give him advance notice if there will be a change to his routine, which is usually an hour sometimes more.

My parents have been a big help with so many aspects of Mr. C. Knowledge is power and so is experience. The school district has caused me more sleepless nights and more stress for Mr. C. than is acceptable or necessary. How much can one person endure or more to the point how much stress can my child deal with?  After years of bullying, the decision was finally made that Mr. C. would be better in a classroom  with a teacher, a teacher's aide and other children with the same challenges.

The frustration that we have endured as a family is tiny compared to all of the amazing gains Mr. C. has accomplished. He now rides the escalator without hesitation and he even gives me positive motivation on how I should just hold onto the bar and it will be okay. I just stand there amazed and happy that he overcame this obstacle that once held him back.  As I always tell Mr. C. if you look close enough the dark clouds have a silver lining, sometimes if you do not pay attention you might miss it.

First Steps

For the last three years, I have contemplated on what to say or simply how to say it. How do I voice my thoughts about my son's diagnosis of PDD-NOS and somehow still function as his advocate/mother. I was happy finding out that there was a name for everything we had gone through all those previous years.  I tried to focus on the questions I have been asked about his birth, was it normal, when did his first talk, walk and everything in between. How many nights I spent worrying about him and how he was going to handle his environment. I had so many questions and by all means there were not enough answers for me.

I looked deep within myself wondering if I was the cause to all of it. The disapproving looks and comments from others did not help me one bit. I found more acceptance and understanding from social workers, doctors and other parents who had children with similar diagnosis. Having a diagnosis was the beginning and an end for me. Finally someone really understood what was happening with my son. 

Mr. C. has his own way of doing things, a routine and he had it down pat. Same routine since I can remember. He played better by himself in a room full of children, was fine when he was left to do his thing. The memories of Mr. C. lining up his cars from one end of the living room to the other and how I made darn sure no one disturbed them. One car out of place would cause him to have a melt down, one that I did not understand at the time.

Going to the grocery store for us was difficult, Mr. C (then 2) would be alright at first after about 20 minutes he would start crying non-stop. I would do everything I could to console him, I even left the store several times and then the crying would cease. I have had people come up to me in stores telling me that "you should make him behave" or "he needs a good spanking."  First of all I was trying to figure things out, why was going to the grocery store causing so much distress to my child?  When it comes to my child I am very protective and yes I have a tendency to say a few things. Over the years I have learned how to say things, when not to say them and how not to react emotionally. 

Autism was not something I had ever paid attention to until the diagnosis came. Then it became my whole world, but if you look closely it was already was except there wasn't a name attached to it.

I had been thinking about blogging for a long time just never found the right time. Well the time is now and as I tell Mr. C. "you have PDD-NOS (Autism) but it does not define who you are." I know he processes the world differently than everyone else and I think that is awesome!