Aspergers? I Wish We Had Aspergers...

Ok that's a wild statement and also untrue.

I don't wish we had Asperger's Syndrome around here.

It gets old though, as increasingly it seems that every time I tell someone my sons are severely autistic someone will pull some Asperger's person out of their ass and compare them to my sons.

Them:"Oh my friend's cousin's son has Asperbergers and he has a hard time making friends."

Me:"Really? Cuz my twins are seven and don't talk and wear diapers. Oh and they don't understand the concept of friends. So yes, I can see that it's exactly the same. Your friend's cousin's son should hang out with us."

It's really never the actually people with Asperger's or immediate family who are afflicted, who pull statements like that out. It's the people who see Aspererger's on TV and think that is what Autism IS.

Asperger's might be autism but autism is not Asperger's.

I'm ranty. It's because I'm tired and hot. It's also because I just sat next to these people who eyeballed the twins a couple of weeks ago with disgust like we are bad parents. I didn't pull out the autism card on them. I just let it go. Judge away.

But back to my point. It's this. They call Autism and it's many many many manifestations "The Spectrum". Ever wonder why?

I'm here to explain. I'm feeling helpful.

It's because autism isn't ONE thing. It's not like Strep which can be defined and looked at under a microscope (ok that's kind of untrue they are finding some genetic markers but that's a different subject). Autism is simply, a whole bunch of various kinds of developmental delay all lumped together.

At one end of the rainbow - you've got those "classic" autism kids you remember from days of yore. Staring at the wall, not communicating, rocking whatever. They LOOK fine but they are NOT. That's the worst case. We're not that bad. /me knocks on wood.

At the other end - are the "High Functioning" autistics - of which the Asperger Folks are part. They talk. They have relationships. Many go to "regular" schools but have social challenges. But developmentally - they're like astronauts compared to my boys.

I have a 15 month old baby girl. I am watching her quest for language, her thirst for it, out pace theirs. Within the next year she'll be talking. Hell within the next six months she'll talk more than they do. She already TRIES to communicate more than they do.

Media is partly to blame. Cuz kids who say "OPEN THE MOUTH" over and over for two hours after having been told to do so at dinner are not as TV appealing as say, the dude from American Idol. But, I'm here to tell you.....

some of us, would give anything, if all it was, was Asperger's.

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Aspergers? I Wish We Had Aspergers...

Ok that's a wild statement and also untrue.

I don't wish we had Asperger's Syndrome around here.

It gets old though, as increasingly it seems that every time I tell someone my sons are severely autistic someone will pull some Asperger's person out of their ass and compare them to my sons.

Them:"Oh my friend's cousin's son has Asperbergers and he has a hard time making friends."

Me:"Really? Cuz my twins are seven and don't talk and wear diapers. Oh and they don't understand the concept of friends. So yes, I can see that it's exactly the same. Your friend's cousin's son should hang out with us."

It's really never the actually people with Asperger's or immediate family who are afflicted, who pull statements like that out. It's the people who see Aspererger's on TV and think that is what Autism IS.

Asperger's might be autism but autism is not Asperger's.

I'm ranty. It's because I'm tired and hot. It's also because I just sat next to these people who eyeballed the twins a couple of weeks ago with disgust like we are bad parents. I didn't pull out the autism card on them. I just let it go. Judge away.

But back to my point. It's this. They call Autism and it's many many many manifestations "The Spectrum". Ever wonder why?

I'm here to explain. I'm feeling helpful.

It's because autism isn't ONE thing. It's not like Strep which can be defined and looked at under a microscope (ok that's kind of untrue they are finding some genetic markers but that's a different subject). Autism is simply, a whole bunch of various kinds of developmental delay all lumped together.

At one end of the rainbow - you've got those "classic" autism kids you remember from days of yore. Staring at the wall, not communicating, rocking whatever. They LOOK fine but they are NOT. That's the worst case. We're not that bad. /me knocks on wood.

At the other end - are the "High Functioning" autistics - of which the Asperger Folks are part. They talk. They have relationships. Many go to "regular" schools but have social challenges. But developmentally - they're like astronauts compared to my boys.

I have a 15 month old baby girl. I am watching her quest for language, her thirst for it, out pace theirs. Within the next year she'll be talking. Hell within the next six months she'll talk more than they do. She already TRIES to communicate more than they do.

Media is partly to blame. Cuz kids who say "OPEN THE MOUTH" over and over for two hours after having been told to do so at dinner are not as TV appealing as say, the dude from American Idol. But, I'm here to tell you.....

some of us, would give anything, if all it was, was Asperger's.

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What Do Y'all DO Over in North Carolina?

Most people know that we go over to University of North Carolina at Chapel Hill every few months for an Autism Study that we're part of. But what do we DO?

Well I'd like to say it's complicated but it's not. However, lots of people have asked me what we do while there.

Basically it works like this. In between visits, Charlie has a powder added to his food or drink three times a day. It's an enzyme. It's a SECRET enzyme formula. However I looked it up and spent a lot of time reading before we went on it and it's basically the enzyme that you and I make to help our bodies break down and flush out "large cell proteins".

Translation - Gluten.

I mean I'm sure it's MORE than that. But that's sort of it, in a nutshell. Rather than put him on a restrictive diet and ourselves as well (seriously have you MET us? We're not going on a diet) he gets this additive usually in his drink.

Then the day or two before we go over to North Carolina, my husband has the horrific job of collection about ONE CUP of poop sample and dividing it up into various little containers and cups.

I guess these are to verify that the enzyme is doing what it's supposed to. We had to provide a sample of the poop to qualify him as someone whose body wasn't producing the proper levels OF the enzyme BEFORE the study.

When we go, we arrive HERE - the University of North Carolina Medical Center.

We cut though the buildings in the North Carolina heat, starting at the Cancer center. We walk past people wearing masks and covered in blankets despite it being 90 degrees outside. People waiting for their chemo and other treatments.

People who have far worse stuff than us going on.

We walk nearly the length of the building above on the right - to that back right corner and take the elevator up one floor where the neurosciences department is and go into the Aspire Research Center. We meet with our case manager and a neurologist and we fill out survey questions and talk to them and they interview us and the boys and they do vitals and stuff.

It's sort of odd. We've known these people over two years now. They KNOW us. I kind of look forward to seeing them. They notice when things change with the twins.

So that is what we do. We spend the night in a hotel at a special rate thanks to the amazingness of the Ronald McDonal House charities and we try to get in at ALOFT because it's pretty much the most amazing hotel on the Earth. We LOVE that place.

So that's what we do. We give the enzyme all month. We collect poop (we meaning the Husband). And we travel to North Carolina where they monitor our progress and changes.

Has it helped?

There are things it has made better. Charlie used to live in a state of near constant constipation and obviously if your tummy hurts it impacts your personality when it's long term. So he goes now without any issue and truly, one of the first changes that we noticed was that he went from being a tantrum thrower 24/7 to being a pretty happy child.

Does he still do the autism flip out?

Yep. But it's usually more manageable, and we get less of the "OMG WHY IS HE SCREAMING" sort of tantrums. Usually you can tell what's going on. It doesn't always make sense, but you can puzzle it out.

I think it's helped but now I think that it's going to make potty training, which is on the agenda for this summer, a real challenge. Because not to be too gross - but we don't get terribly SOLID poops now. We've kind of gone too far the other way.

But we'll figure it out.

I hope that this enzyme makes a difference in other people's lives. It's been fast tracked for FDA approval so we'll see. I'll be interested to see what it does on a larger scale. Right now only 175 kids in the country (or at least that was the launch number) are on it. And we're in the first group.

And now you know what we do in North Carolina. Fascinating, eh?

What Do Y'all DO Over in North Carolina?

Most people know that we go over to University of North Carolina at Chapel Hill every few months for an Autism Study that we're part of. But what do we DO?

Well I'd like to say it's complicated but it's not. However, lots of people have asked me what we do while there.

Basically it works like this. In between visits, Charlie has a powder added to his food or drink three times a day. It's an enzyme. It's a SECRET enzyme formula. However I looked it up and spent a lot of time reading before we went on it and it's basically the enzyme that you and I make to help our bodies break down and flush out "large cell proteins".

Translation - Gluten.

I mean I'm sure it's MORE than that. But that's sort of it, in a nutshell. Rather than put him on a restrictive diet and ourselves as well (seriously have you MET us? We're not going on a diet) he gets this additive usually in his drink.

Then the day or two before we go over to North Carolina, my husband has the horrific job of collection about ONE CUP of poop sample and dividing it up into various little containers and cups.

I guess these are to verify that the enzyme is doing what it's supposed to. We had to provide a sample of the poop to qualify him as someone whose body wasn't producing the proper levels OF the enzyme BEFORE the study.

When we go, we arrive HERE - the University of North Carolina Medical Center.

We cut though the buildings in the North Carolina heat, starting at the Cancer center. We walk past people wearing masks and covered in blankets despite it being 90 degrees outside. People waiting for their chemo and other treatments.

People who have far worse stuff than us going on.

We walk nearly the length of the building above on the right - to that back right corner and take the elevator up one floor where the neurosciences department is and go into the Aspire Research Center. We meet with our case manager and a neurologist and we fill out survey questions and talk to them and they interview us and the boys and they do vitals and stuff.

It's sort of odd. We've known these people over two years now. They KNOW us. I kind of look forward to seeing them. They notice when things change with the twins.

So that is what we do. We spend the night in a hotel at a special rate thanks to the amazingness of the Ronald McDonal House charities and we try to get in at ALOFT because it's pretty much the most amazing hotel on the Earth. We LOVE that place.

So that's what we do. We give the enzyme all month. We collect poop (we meaning the Husband). And we travel to North Carolina where they monitor our progress and changes.

Has it helped?

There are things it has made better. Charlie used to live in a state of near constant constipation and obviously if your tummy hurts it impacts your personality when it's long term. So he goes now without any issue and truly, one of the first changes that we noticed was that he went from being a tantrum thrower 24/7 to being a pretty happy child.

Does he still do the autism flip out?

Yep. But it's usually more manageable, and we get less of the "OMG WHY IS HE SCREAMING" sort of tantrums. Usually you can tell what's going on. It doesn't always make sense, but you can puzzle it out.

I think it's helped but now I think that it's going to make potty training, which is on the agenda for this summer, a real challenge. Because not to be too gross - but we don't get terribly SOLID poops now. We've kind of gone too far the other way.

But we'll figure it out.

I hope that this enzyme makes a difference in other people's lives. It's been fast tracked for FDA approval so we'll see. I'll be interested to see what it does on a larger scale. Right now only 175 kids in the country (or at least that was the launch number) are on it. And we're in the first group.

And now you know what we do in North Carolina. Fascinating, eh?