Tuesday, December 27, 2011
Christmas Cards went out late. Oh yeah, and the card was actually the card from last year that never got sent. Yup. We had a theme for this year: No Stress. Or at least diminished stress. Of course, that was not the reality in the least. But the holiday was not to blame.
After several weeks of waiting for Zach's extended school year to begin, we had to push a little harder for it to happen. For those not into the special ed terms - I'll give you my version as it applies to our situation: Zach goes to a typical classroom kindergarten where it is only half day and has his own special ed teacher and TA to support him. Since Zach receives 9 1/2 hour sessions a week of therapy (that includes speech, occupational and physical therapy) , and for the fact that these sessions are "pull outs" meaning he receives this services outside the classroom, we had agreed that at least a few times a week, these sessions would be appended to his day, so after school, they would run for instance a speech therapy session as opposed to taking him out of class to do it. We were told it would take 3 to 4 weeks to get schedules settled.
About one month into the school year, I had heard nothing from the school about extended day. So I began to inquire - schedules were still be settled, and the new PT was just hired. More time passed, and some phone messages were left, one of which was from the PT who said he would run one extended day session. More time elapsed and it still hadn't happened.
I went to Zach's special education teacher and asked her for his therapy schedule and was told she didn't know what it was. I then asked her to look into what was going on with the extended day. A week and a half passed - no comment. A few more days pass - and it was parent teacher conferences. The special ed teacher said extended day was being worked on.
About a week before Thanksgiving I went to the principal in person to discuss. After Thanksgiving I received a message saying they could get one session a week as extended day. She told me that she had met with Zach's team who discussed that his being pulled out constantly from the classroom would not impact him academically.
I told the principal that this was not what we had agreed to at the CSE meeting - and that I would be pulling out the recording that we made. She seemed to be indifferent that I had them digitally recorded, agreeing and the special education director even suggesting the extended day in the first place. An email was then sent to the special education director - a partial transcript of the meeting sent and we told them where on the recording to listen. The special education director said she would look into it.
Steve left his business trip early and when he got back in town, he made a B-line straight to the superintendent's office where he requested an in person meeting. An hour after Steve made that trip, we received an email from the special education director stating they were working on it and that extended day would start the following week.
We were also told that next time, we should speak up sooner.
There is more to this story and I will share it in the next post. Now perhaps my not tapping the keys has some explanation for you all.
The fall is a particularly difficult time for me, I have SAD (Seasonal Affective Disorder) where the change of weather and diminished natural light levels leave me very lethargic, plus the demands of the holidays, and the fact that several of my most unhappy events in my life happened during this time of the year (Dad had his heart attack a few days before Christmas, Buddy died a few days before Christmas, my sexual assault took place at this time of the year, we received Zach's diagnosis at this time of the year) leave me with little desire to be chipper to say the least.
Worrying about my kids just adds to the stuff. But I want them to have the joy that children should be able to have at the holidays. So, I do my best to figure out what it takes for me to get my butt out of bed in the morning and keep myself moving through the day. Coffee no longer makes the cut. Even 4 cups worth, although it does make my hands do this creepy shaking thing that had me getting nervous about Parkinson's. Exercise has always helped - but I have had a knee issue, so I have laid low on the running. But Pilates on Monday nights with my sister have been helpful, although one day a week of exercise only does so much. I have also tried to get more rest. LOL Okay - I just stopped laughing. Yeah - well, a dog who eats socks and then hurls and a child who sleep seems to be optional as a life sustaining requirement don't make for the best contributors to positive sleeping experiences for Momma and Daddy.
For this reason, I am really grateful to BJs and the sample lady who upon walking down the aisle with my cord of toilet paper and barrel of laundry detergent offered me a drink of some pink fizzy stuff. She made me listen to a 90 second blurb before I received my bottle, but alas, there it was a water bottle that had this miracle powder added to it that when combined formed a cotton candy colored beverage. And it tasted OK. And hoo haa - I was awake, and calm, and not jittery.
Since this moment in time, I have introduced the colorful fizzy making substance to my dear husband who has also embraced its' charms. ZipFizz is our current wonder drug for getting us through these times. B12, caffeine and 10 calories.
WARNING: TMI ALERT - DISCUSSING SICK CHILDREN ***********************
Steve was away a week, and of course my children decide this is when it is most important to get the stomach bug. While Steve wheeled and dealed (LOL) his way at a convention - I was joyously cleaning bodily fluids of all types from my germ laden home. My favorite part of the story is that we now have Lucky. And being that she is a large dog, we have to keep the toilet covers down so as to avoid her lapping up the succulent waters of the porcelain bowl. (Blek!)
What I never felt the need to discuss was to Sophia, how when she got sick at 2:36 in the morning (and kids always seem to do this in the middle of the night, don't they?) that when she ran into the bathroom to take care of business that despite her aim at the bowl, if you don't lift the cover up, well, we all know about vector forces from high school physics, right? Yup. Splashback. It was totally disgusting, only to be made worse that while I was trying to soothe my poor sick daughter, my large young pup came in and considered this dinner time. If you think I didn't hurl a sentiment or two at my husband during this time, then you just don't know me very well. NOTE: No children were exposed to profanities were launched during this tirade in fr
at this time, just lots of "oh... you owe me...."
The bug was fairly short lived (thank the Lord!) and minus missing a few days at school, readily remedied with time and a good washing machine.
END OF TMI STORY********************************************************
During Steve's departure, with sick children and crazed puppy underfoot, I managed to get all the Christmas decorations up myself - with a little help from my nephew. Christmas is a hard time for Steve - so I wanted to get as much done with him out of the house as possible.
I claimed victory over the prelit Christmas tree (5 strands of lights were out) , Grandpa's nativity set was repainted and setup up, and all the other accoutrements set in place. I was so proud of myself! Certainly getting setup for Christmas would help put us in the spirit - and indeed I think it helped.
We didn't make all the cookies, but we did make 300 pierogies with a friend. Christmas cards were sent out on Christmas Eve - oh yeah - and as I previously mentioned, they actually contained the Christmas Cards from the previous year that were never sent. Presents were mostly purchased online. Things were far from perfect, but things were great. No yelling. No frantic anything. Just letting the chips fall where they may.
Our Christmas Miracle came in the most interesting of places. Originally I thought I would write about the fact that at Steve's company Christmas party, I ran into an old college chum who I found out also has a son with autism. During our discussion his wife shared the name of a therapist that they think could be very helpful to Zach. Zach's speech has deteriorated once again. He is saying less, but more pronounced is his lack of pronunciation. His lack of communication skills has led me to start researching and consulting with professionals on alternative and augmentative communication technologies for him. With Zach unable to request his wants and discuss his needs, and the fact that at age 5 we have given therapies nearly 4 years to do this, we have begun to lose a little hope that he will communicate verbally. Sometimes I wonder if he is over in some other place and not wanting to communicate his needs, likes, dislikes. Should I just let him be?
So the other day, I sat reading a book to Zach while he cuddled up with me. He doesn't always appear as the most attentive child during these times, but after reading stories of children who seemed in another world later recounting in detail things from their pre-communication days, I keep it up. I often wonder why I write the things I do in this blog. Quite often it really is just a stream of consciousness. Well, I, totally unaware, began to bite my nails as I have reported in this blog is one of my most disgusting habits. Yes, stress levels are so high that reading a book brings me to this. Anyhow, Zach reached over and pushed my hand from my mouth. I was surprised to say the least, but I wasn't sure if it was a purposeful gesture or not. So I once again pretended to bite my nails, and lo' and behold, the kid grabbed my hand and put it in my lap. I was shocked. This is not some uncaring, unaware kid on my hands.
While I am not sure what exactly this means, it did help add some of that fuel to help me get over some of my dejected feelings about the difficulties with his school situation.Again, to many this might not seem significant, and to be honest, I am not exactly sure how to interpret this. Perhaps the only conclusion I have made from this, and likely the most significant, is that we need to keep those expectations high and we need to keep on working. My boy is growing, learning, and developing. And he does communicate some things.
Keeping our hopes high in Camillus...
Posted by Leanne Morphet at 12:03 AM