Please keep Gavin in your thoughts

Gavin had a pretty rough day.  He’s been struggling quite a bit and not necessarily just behaviorally. He’s made some really good choices recently, as well as some not so good ones. 

I think we ended up having two tantrums today.  Nothing catastrophic but enough to disrupt everyone.

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The other thing we have been noticing is that he’s becoming more and more uncoordinated. He’s walking into things and knocking things over as he walks by.  Today alone, he knocked his water bottle over at least half a dozen times, spilling it onto the floor.

His movements are becoming quicker and more clumsy. This is really frustrating for him.

All we can do is remind him to slow down, so we can limit the accidents and avoid him or anyone else getting hurt. 

I honestly don’t know what, if anything we can do.

This is all likely part of whatever is going on neurologically and we may never know for sure what’s going on.  Speaking as a parent, it’s such a helpless feeling to have to sit back and watch this all unfold, knowing that we have already done everything within our power to help him.

What’s slowly happening to Gavin, isn’t something that is likely to get better and that breaks my heart.
The only thing we have left to do is try to get him out to John’s Hopkins but I don’t know if or when that will happen. The reality is that the most we would gain from doing this, is likely learning only the name or what’s stealing him away.

The unfortunate truth is that we’re dealing with things that simply can’t be fixed. That is truly a tough pill to swallow as Lizze and I will never give up trying to get to the bottom of this.

This site is managed almost exclusively via WordPress for Android. Please forgive any typos as autocorrect HATES me. 😉


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rmagliozzi

have they checked for viruses? I just found out HHV-6 and Epstein Barr can cross the blood brain barrier and cause cognitive dysfunction, neurological problems and commonly lead to autoimmune disease. Many autistic children have both them. My son does. I noticed he seemed much less foggy in his thinking when we put him on high dose lysine and another antiviral supplement.

Lee Klekotka

it seems that your page might be down. I keep trying to view it and I keep getting, “this page cannot be displayed”

Joey Caylor Spencer

Just got a error that the site is offline.

Missy Plenge

🙁 HUGS to all of you

Cindy Wolf

I hope you are able to get him into KKI. They’ve always had some answers for us when we’ve gone. Not all the answers, but more than we had.

Meri Beller Kelly

So sorry to hear, it just plain SUCKS!!!! Life is definitely NOT FAIR!!!! Sending you a BIG cyber hug!

lostandtired

chefaimee Meaghan1985 Gabe84 thanks everyone.  🙂

chefaimee

Meaghan, if these people don’t believe you? Why on earth are they still your doctors? I have Misophonia. If an audiologist thinks that I like the fact that I want to stab people that are I can hear chewing (I become instantly furious and have to get away from the noise or I lose it.), My favorite nephew sounds like he’s being waterboarded every time he takes a drink. I don’t WANT to feel like I hate him, even briefly (of course I don’t, but the reaction is so strong and so severe that I feel horrible.) Who would make that up, and to what end?

Meaghan1985

chefaimee They’re not MY doctors. They’re government doctors — one of whom didn’t know what autism was and asked if it could be cured if I took some kind of medicine!

Meaghan1985

On a totally unrelated note: this is an idea partially inspired by your films and photos on your blog. I was thinking that, to show certain people (especially medical people), who think my autism is mild to nonexistent and I’m just whining/overreacting, bring my video camera and tripod to my therapist’s office for a session, set it up, and film me trying to have a session but provoke a meltdown or near-meltdown. The most efficient way to do this is to have a loud, very irritating noise going off at frequent but irregular intervals. I know that there is some kind of device at the psych clinic that does just that, though I don’t know what it is. I was hearing it as background noise and though I tried to keep it cool, within fifteen or twenty minutes I was throwing myself against the wall and the staff member I was talking to made haste to find a private room where I could not hear the noise. (And I had EARPLUGS in. It was that bad.)
Maybe I could figure out what device it is and borrow it. If we can’t use that one, though, we can find another noise on YouTube or something, and my therapist could make it go off at his leisure, with instructions from me to NOT stop doing it even if I beg him to. The results ought to show just what I’m up against. If nothing else I could post it on YouTube for autism education.
I have to talk to my therapist and see what he thinks, of course. I see him Saturday. And I have to ask if the clinic would allow me to bring in a camcorder. Of course I would not use it in public areas or in a group session (not that I’m in any group sessions anyway) due to confidentiality issues, but I don’t see why it should be a problem in my therapist’s office, door shut, just him and me.

Gabe84

Gavin and the Gorski family are in my prayers & thoughts.

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