Friday, October 15, 2010

Quirky Stuff

Just wanted to share some of the quirky stuff C.S. comes up with that I just love. Yesterday he brought home a science test. He did very well. He was excited not only to share his grade with me, but also his answer to the last question:
If you were in a forest all day and all night, what would you see? Write 4-5 sentences that will describe a forest. Make sure to include the living and nonliving things you will see.

His response was dotted with his personally created set of punctuation marks, a few music notes and was full of word and sound repetitions that didn't exactly form meaningful sentences. He sang it to me. How amazing.

"That was beautiful, honey. But do you think your teacher understood what all your punctuation marks mean. Not everyone knows those."

"She does. I sang it to her."

So glad to know that not only did she give him full credit for his answer, that she listened as he sang it to her. A science test in song. I love it.

Thursday, October 14, 2010

Middle Child

I have only two children and with these two, there seems to be absolutely no middle ground so I was surprised yesterday to discover how trapped DeDe was in the middle of C.S.'s different abilities.

I first realized this driving in to school as I was quizzing DeDe for an upcoming science test. Surprising us both, a little voice kept chiming in quickly from the back seat. C.S. knew all the answers as DeDe remarked indignantly "without even studying and I'm the one in 5th grade!" After school, while doing homework, I was quizzing her on multiplication tables. She needs constant practice because it is just not sinking in easily. I made certain we were in a different room, but we both heard C.S. laugh from the stairs when, while just on fours, she missed an answer — for which he got a quick and stern reminder that he needs to be considerate and understanding of others. But he could easily see how DeDe was nearly destroyed by this — big sister was in tears — and pretty soon so was he. Good grief. As I moved back and forth trying to console my children, my daughter, who was so totally confounded by her little brother, tearfully confessed her fear that he would make it to college before her. Always competitive, she realized perfectly how many ways she was at risk of loosing out to him.

I explained to them both that they've been given very different gifts. DeDe is a passionate artist and natural athlete (and, she insists, blessed with the ability to talk to animals in their own language) and C.S. a glutton for facts and figures. They both agreed to the assessment — but it was small comfort to DeDe. She is an exceptional young lady herself, still I can see how she might feel caught in the middle of her brother's more dramatic extremes.

Silver Lining:
One of my favorite quotes, I'm not certain from who, friend or celebrity, is "Why be Normal. Normal is boring." Never a dull moment around here.

Tuesday, October 12, 2010

Play Dates

While I still wish play for my children could be as spontaneous and taken for granted as it was for me when I was a kid, I've decided to make the most of the Play Date. In charge of making arrangements myself, I am able to pick what I think will be an ideal time, setting, duration and even guest. It allows for a great deal of control over the social situation.

We had two for each child over the long weekend. I'm so glad to report that my blog will not end in a silver lining today because it is unnecessary. Everything went incredibly well, not only for the children, but also for me. Our Saturday venue for C.S. was arranged by his "friends group" facilitators. This Saturday, instead of meeting at the doctor's offices, we met at the home of one of the other families. While the children practiced playing appropriately with one another, I got to sit down at a kitchen table and chat with the other two mothers who I had not had a chance to really meet yet.

How wonderful. How supremely enjoyable. They were amazing women. Kind, welcoming and so perfectly understanding. (She even offered snacks my son could eat!) How perfectly supportive it can feel to just speak to someone who understands the trials you face so well. Smiling and hopeful, these veterans of the Spectrum had realized their place on it much earlier than I and had obviously faced much more difficult trials. I was glad to have found them and humbled by the experience.

I also have to admit to a small but somewhat understandable worry — after hearing how one's daughter climbed up a ladder, across the roof and down a chimney and the other's son was diagnosed without a battle due to his repetitive behavior at 16 months — my own challenges seem so small next to these. I have to wonder if although having found a wonderful community, whether we'll find ourselves on the fringe of it. High-functioning does seem to place you on the fence in so many places.

We'll see I guess, because I plan to call the local Mom and meet for coffee. I'm looking forward to more and more play dates for all of us!

Monday, October 11, 2010

Tipping Point

I had an absolutely lovely lunch with C.S. the other day. We talked. By this I mean, we had a true conversation, an exchange of ideas. He sat in his seat. He ate with his chop sticks — perhaps just because of the novelty, but hey, he was using utensils. And I suppose I have to give credit to a difficult evening that brought us to this wonderful place for lunch.

As I've mentioned there are times when my son's behavior suddenly surpasses quirky and takes those around him by surprise. We ran smack into one of these a few weeks ago.

I was trying to support my daughter, dear DeDe, to help start up an Odyssey of the Mind team at our school. A parent had graciously offered to have the preliminary meeting at his home, by their pool. It sounded like a great plan. The kids could enjoy one of the last warm evenings before Fall blew in and we'd be able to work out some complicated scheduling and logistics while they played. I had no other option but to bring C.S. along, but he loves the water. I felt we had a fairly high probability of this going well.

We arrived to a welcoming poolside spread of pizza, fruit, drinks and more. I wasn’t prepared for that, I hadn’t brought a substitute snack. But the kids took quickly to the floats and C.S. didn’t mind as they nibbled away at treats. The set up was working out fine. It seemed more like a party than a meeting and everything was going swimmingly. I had made it through the meeting and now it was time for last year’s leader to demonstrate what OM was all about to the kids. C.S. Stayed in the water while his sister got to focus on a task with her group. She was having tons of fun with no interruptions from her little brother. It seemed my only real concern would be how to coax him out of the pool once it was time to go.

In conversation, our host mentioned he had a dog. Both my children adore animals. If there was a pet around, I'm sure they would have found each other by now, so I asked where the dog was hiding. He explained he had him crated because he likes to jump in the pool and will try to climb on the kids when they're swimming. So when the man offered to let the dog out if my son was ready to dry off for the evening, it seemed the perfect solution to transition him had just been presented. I called out to C.S., "hey, you want to see their dog swim? Why don't you get out and let the dog have a turn? The only way he can go in is if you get out.”

C.S. eagerly obliged. Minutes after he had dried off, an energetic Wheaton Terrier came bounding across the yard, down the steps onto the patio and happily lapped legs and hands of the admiring children, but he did not jump into the pool. C.S. loves dogs and usually pets them with such amazing tenderness. But something had happened, or more precisely, had not happened. C.S. was not his usual self. He petted and greeted the dog with his typical smiles. But then, he did not caress his soft ears or lay his cheek against his fur. He tried to push the dog into the pool. The homeowner was able to stop that one. But C.S. persisted and tried to pull the now cowering animal across the patio by the whiskers. The dog snapped at him. Naturally the owner got defensive and obviously upset. As I intervened, C.S. began to cry, then wail. We were headed for a meltdown. One of the other parents grabbed his son and left in a hurry with such an expression of fear and disgust, as if behavior like this might be contagious. But C.S. was actually containing himself rather well. I was able to get him to sit on a chair. DeDe, ever patient and helpful, had already begun packing the bag for our get-away. We ended up leaving in retreat. DeDe had a chance to become friendly with the girls in the group, but I felt pretty certain after this that it would go nowhere. She would likely be invited on just as few play dates as last year.

What is a Mom to do when one child negatively impacts the other. I feel so protective of my girl too. I had to do something.

And so, we, my husband and I, considered medication for our son. A very small dose, only 2mg. The doctor said we were targeting his anxiety. Our goal was to help him become more flexible and to just take the edge off which would help him not only in school and social situations but also to access the therapy. It sounded reasonable. But we had some fears to face, such as the gaunt, vacant stare we had seen on a kid we knew on Ritalin or the unexpected opposite reaction C.S. had to cold medicine. But she reassured us, that although this would be trial and error due to his atypical neurology, we would watch him carefully.

I can’t keep my eyes off him now. Absolutely I’m watching him and marveling at how calm he is. How his eyes don’t flit around all over the place when I speak to him. He makes eye contact. Not always, but when he does now, I am just drinking him in right through those big beautiful dark brown eyes. He sits in his seat. He’s not flipping and flopping all over the bed when we watch TV. My husband is equally amazed. We are all simply enjoying him. He’s still his quirky self, he still runs around doing his quirky stuff. But now, everything about him seems so much more content and available to us.

It has only been eight days since we gave him his first dose. Its hard to say if we’ve avoided a meltdown in this time. The change is slight. But it is so full of promise.

Silver Lining: I guess this goes to show that when you hit a tipping point you can use that energy and momentum to move in a positive direction. Who knows where exactly we’re headed, but for right now, I’m really enjoying this new territory. I'm truly enjoying such seemingly simple pleasures like having a conversation with my son.

Tuesday, October 5, 2010

Cashing In

We have an appointment for C.S. today and another scheduled for Friday. Today, I will pull $450 from our health insurance savings account to cover the Doctor's fees. Although we'll go to the same office, this will not be an option on Friday. We will be meeting with a social worker and so then I will pull out my check book and sign away $200. But I love these appointments. I think they are the key to making tremendous headway and I am glad we've started on this path. Of course I know the autism mantra — early intervention is key — and he is eight. I feel late to the game. So, two appointments in one week doesn't faze me because right now nothing could feel more imperative. Still, while we've staunched the tears that once flowed too threateningly, we are now hemorrhaging cash.

I freelance to earn money for the family and am fortunate to have found a reliable client with a steady flow of work. I left my salaried position to allow me more time to advocate for my son. It has proved to be a full time job. All of this is incredibly rewarding, but of the two positions I hold, there is no more gratifying compensation than seeing my children, their health and happiness, improve. Unfortunately one is desperately dependent on the other. This makes me an incredibly busy woman.

But I'm worried I won't be able to keep this up. I've got my fingers crossed hoping I can convince the insurance company to cover a greater portion of the fees while also trying to will the deductible to hurry up and be met so we can begin to receive some reimbursements. We are running out of money. But, this, these therapies and the advancements they promise, is not an opportunity I could turn down. I will spend whatever it takes. I have every intention to cash in, somehow.

Silver Lining: After this expensive week, I just may have meet his deductible. Even if I'm not able to convince the insurance company to cover a greater portion of the fees, yet, at least we may be well on our way to receiving our first reimbursement check. And then that money will just cycle right back into the process and I'll have a little more available to pay for the next appointment.

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