Riding the wave -

Riding the wave

On the ocean of life we are experience high tide’s and low tide’s. Sometimes there are even rip tide’s that pull you out to sea.

We have experienced many low tide’s and many more rip tide’s in our voyage so far. Today started out pretty low. We had to rush Lizze to the ER because yesterday she developed a HUGE bruise on her lower belly where they made the incision. I was concerned because the bruise showed up a week after the surgery. My parents came and got the kids and we were off to the ER. Everything checked out just fine and we were back a few hours later. My parents held on to the kids so we could get some much needed sleep.

Later on I spent some time with Gavin and Emmett John. Gavin was doing really well. We actually talked and even shot some hoops in the dining room. He was actually engaged. That almost never happens anymore. He played with Emmett John and never once got to rough. I actually had a good time. We even talked about his bio-father (I raised Gavin since he was about 15 months old). I actually finally got to adopt him a almost 2 years ago. Anyway, it turned out to be a pretty good day.

Gavin tends to be this way when he is sick. We have noticed that when he runs a fever all of his autism related symptoms are gone. This only ever happens when he is sick though. They call it the” fever effect”. It is documented that this happens to some kids with autism. We haven’t had one of these moments of clarity in quite a long time. It was just nice to be able to take advantage of it.

The reality is that he will struggle again tomorrow as he starts to get better. I’ll take what I can get 😉

Lost and Tired

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I found your blog through your twitter account. I too have a child with autism. Max is 9 and non verbal, he also suffers from PICA, sensory issues. He has been classified as "classically austistic." I read your blogs with so much interest because I can identify with everything you wrote. The blog about Gavin behaving well when he is sick with a fever, that is soooooooooo true.. When Max is feverish or generally under the weather, he too almost acts, dare i say "normal." It's crazy.. Its like being sick slows him down and his brain is now functioning slower and he can process things better.. CRAZY..

I can also understand the whole isolating thing.. Both my husband and myself have nobody to watch Max.. Sometimes, my parents and but they can't handle it, only for like a few hours… I can't stand when friends tell me, "oh he is not that bad." I want to slap them all.. LOL.. they insist they know Max, when not one volunteers to watch him…

The reality is we don't leave Max with anybody anyway because he is so all over the place, only my husband and myself and of course professionals know about his behavior. Someone else, wouldn't know and Max would hurt himself and they would blame themselves.

Max, when he wants too, will eat anything.. We've had horror situations with feces, cat litter, grass, glass, you name it, it either been pulled out of his mouth or passed through his stool…

It's crazy, it's tiring, it's depressing.. But we love him so much…and we feel blessed because we have him and not some crazy people who might abuse him..

R biggest fear.. what do we do when we get old. Max has an older normal brother, but that doesn't comfort us.. We want Max with us forever.. But that is not possible.. so we are filled with dread and depression as each year passes by…

We too are tired and often lost.. It's a rough life we all lead…

Lost and Tired

Thanks so much for your reply. I understand where you are coming from. Life is absolutely a challenge.

Lost and Tired

Lost and Tired

Thanks for the reply. It's called the fever effect. It just happened again to Gavin the other day. There have actually been studies and they are trying to figure out how to safely replicate the conditions without the child having a fever. I hope we see this science mature in our lifetime. Hang in there.

Lost and Tired

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