Something was (is?) up with him but I have no idea what . After a few days of seeing him not quite himself - I verified that there was no fever. He continued to go to camp, which runs from 9am-1pm, then to speech, occupational and physical therapy (1:30-2:00 pm) and then back home to the in home therapy from 2:30 - 4:30. It's a busy schedule - and despite him not being himself, he seemed to want to go and participate, so I had him continue. In his home program, the therapists commented that although he certainly was not being himself, he actually did better than ever with some of the programs they were working on with him. It was almost as if he didn't have enough energy to oppose the demands being placed on him.
In fact, when presented with a new program - rhyming words, the therapist said that he was scoring about 80% correct at the first time ever being tested with his ability to match rhyming words, a skill that we never explicitly taught.
Although he didn't say much, and perhaps even less than usual, one word became very prevalent in his vocabulary: "No" If I asked him just about any question, from "Do you have to go potty" "Do you want the iPad?""How do you feel?" "Do you want milk?""Do you love Mommy?" "Do you want to swing?"he almost always seemed to answer "No". Preferred activities and foods all had a "No" response if offered.
Now here in lies some of the difficulty. Was Zach sick? There were no other symptoms: no fever, no nausea, vomiting, runny nose. Zach just wasn't eating and barely drinking. Was it behavioral? In other words, was Zach trying to express himself by not eating? Did he not feel well one day, and then it became a habit to just not eat? As much as I asked him if he was not feeling well, played with the words and restated my question "Is there a boo boo?" "Do you hurt?" "Not feeling good?" he was just incapable of telling me what was going on. I said in a post to my facebook page:
His lack of communication is excruciatingly hard at times like these.
His skin tone became ashen. Just when I thought it was time to call the doctor, he would drink a glass of orange juice and eat a cracker. Then the next day, he would once again not eat.
Some may ask why I didn't just bring Zach in to the doctor. Well, Zach's last trip to the doctor was not a positive experience, and that was to have a mandatory TB test in order to be eligible to have an evaluation by a local agency for a communication device. (uugghh) I get a little tired of the stressful visits to the doctor slowly making each subsequent visit more difficult. All it takes is one person oblivious to Zach's needs in combination with an insensitivity that makes you wonder how she got her job in the first place to set in place a series of stressful encounters that seem to escalate with each iteration. His lack of communication means he doesn't understand the necessity for these events. His limited experience with these events means we don't have the requisite repetition for him to figure it out on his own. Add in that the few iterations we have progressed through have had a few people who should not have been in the line of work they are in, causing Zach undue stress and confusion, we are certainly plagued with trepidation.
So before we decide weather or not to expose our son to yet another possible traumatic event, we have to pretty much do a risk analysis, deciding what the probabilities of it actually being in Zach's best interest to proceed or not. Depending on the day, we likely would not meet with Zach's primary pediatrician who at least knows what Zach's version of autism looks like, or acknowledges that Zach has autism and isn't just a brat. It is so hard for me to watch another health professional with little understanding of autism try to engage Zach in conversation. What is even worse is when they see his diagnosis in his chart and then discuss things about him like he isn't present.
When Zach began to drink and eat, the color returned to his cheeks, I literally took a deep breath and let it all out. I know my stress level is pretty high, I have been aware for about 9 months that my breathing is so shallow, when my stress goes even higher, as it does when I worry about him, or an occasional Sophia issue, I notice just how shallow my breathing is that I actually am almost holding my breath. My normal state of breathing is as if my chest is constricted by a set of rubber bands.
From a facebook post from my Autism Awareness series:
Most understand that parenting is stressful. Logic would conclude that parenting a child with developmental delays is even more stressful. Research indicates that parenting a child with autism is even more stressful than that of a child with developmental delays. One report indicated that mothers of children w/ an ASD had cortisol levels that occur when there is chronic stress, consistent with people experiencing chronic stress such as soldiers in combat. However, unlike combat situations, the care of some children with an ASD can be lifelong. Another study indicated that levels of social support were the most powerful predictors of depression and anxiety in mothers. Furthermore, informal support appeared to be a more effective stress-buffer than formal support. Many parents often cite that family and friends often alienate them after a diagnosis.
I have always wanted to express a way to explain the stress - and that is one of the reasons I made a point to post this to my facebook page. Now that might explain a bit about the stress factually, why it is what it is, that it is real, but it doesn't give the readers something they can relate to as to how it feels. Now some people might not find the situation stressful - I don't seem to meet them though and unfortunately, I am not one of them . One mom I befriended on facebook stated in an online article that homeschooling was the sure way to relieve her stress - no more CSE meetings, problems with the IEP, issues with bullying. Believe you me if I say that didn't get me thinking. I don't necessarily always find the autism to be an issue, and it isn't Zachy - he is a joy! But the process, the mounds of paperwork/red tape, the lack of quality control, the lack of resources, people's insensitivity, people's ignorance - these are more often than not the cause of the stress.
Anyhow, it took me 6 weeks, but I had the opportunity to read a book that I felt finally captured how to explain the feeling to those who haven't been through it:
... the first time you notice your baby picking up a marble and putting it in his mouth or the first time you take your eyes off your toddler in a bookstore and he disappears, for a second, just a second, you are reminded. Yes, you think, I remember that feeling—that’s dread. Of course, when you learn your child has autism, that dread not only returns, it settles in for the long haul. From Bad Animals by Joel Yanofsky
Now, I am not found of the word dread in the above passage because I think most people think of dread as reluctance. However, the other meaning of dread is extreme fear, and that hits the nail right on the nose. We live basically in fear for the unknown, because in the back of our head we see all the things that can go wrong. We are constantly trying to predict the possibilities and then plan accordingly.
Most importantly is that Zach is back to his normal smiley, energetic, mischievous self. I just need to remember to breathe.
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