Thursday, June 12, 2014

causes and cures and craziness, oh MY!

When you are thrown into the World of Autism, where do you automatically turn for information?  The internet!  Talk about information overload!  You have to decipher fact from fiction, and everyone and their mother has an opinion about every aspect of autism.  My favorites are the blanket statements regarding so-called "cures" and "causes."

"Autism is caused by vaccines."  Yeah, we didn't have that experience, and I haven't seen the hard science in support of that claim.  However, I'm not going to change what another person truly believes they saw (and who am I to say that they didn't have that experience?), and why should I?  I'm not the foremost expert on the subject of the causes of autism, and neither is anyone else (at this time, anyway).  I do know that I resent the Hollywood stars stepping up to the plate who preach about the horrors of vaccinations (particularly one individual...).  It's ridiculous to me that mainstream America will just fall at the feet of someone just because they are famous...and that goes for in and out of the autism world.  When you are famous, you are automatically a role model, whether you like it or not.  Be careful what you preach...

"Autism can be cured with chelation therapy."  Chelation is the removal of heavy metals from one's blood, and is known to be quite dangerous...even fatal. thank you.  I want my child here with me, thank you very much!

"Autism can be cured by switching over to a gluten-free/casein-free diet."   Nope.  Don't buy that one either.  Laurie has Celiac Disease.  Converting to a gluten-free diet did not jolt her into non-special needs status.  It didn't really do a whole lot except increase our food bill and cause our already picky child to become even pickier...

"Hyperbaric Oxygen Therapy will greatly reduce the severity of behaviors for an autistic individual."  Therapy utilizing a hyperbaric oxygen chamber involves breathing oxygen in a pressurized chamber and has been cleared by FDA for certain medical uses, such as treating decompression sickness suffered by divers. Some people claim that their autistic children have slept better after a treatment or have been able to focus more clearly.  I am in the camp of "people will see what they want to believe."  This type of therapy has not been cleared for autism, though there are many people who have personally purchased a chamber for their home use.  I can't find a lot of factual information about hyperbaric oxygen therapy as it pertains to autism, though there are many opinions!  To me, though, it just seems like a waste of a lot of money since I can't seem to find any hard facts about the benefits.

There are so many more so-called cures and therapies circulating around on the internet.  Not to be jaded...there are many people out there who are out to make a quick buck on the parents of autistic individuals, and they don't care who they hurt in the process. And those parents are so desperate for an answer or a cure that they just hand over their money...  It breaks my heart...

I believe that the best thing that one can do is to find a pediatrician that one truly trusts, and to talk about all of the various treatments available.  A medical doctor is much more qualified to help you sift through the fact and fiction in the world of autism...much more so than a movie star who does not much more than read lines aloud to a camera.  A medical doctor can guide you as to treatments and evaluations.

Basically I think that you have to research everything that you can about autism, and then make the best educated decision that you can.  It's not easy.  Undoubtedly you will have people judging you and offering their 6,000 unsolicited opinions.  But in the end, you have to decide what will make your child the best person he/she can be, and what kind of judgment calls you can make to help him/her along their journey through life.

Wednesday, June 11, 2014

River Rat

Laurie has a community worker who takes her to the Boys' and Girls' Club and to the park.  Laurie is typically content to just play on the playground at the local parks.  Then one day she decided that she wanted to take a walk.  They walked all around, and then they started skirting the river from up high.  Her community worker did not know that there were trails down to the river (she only knew of the boat launch).  Well...Laurie found a path...

So I get this call from Laurie's community worker who has taken Laurie on an outing.  I could hear the panic in her voice even before she said to me, "Laurie has kicked off her socks and shoes, and is trying to go into the river.  I can't hold her back much longer."  Ready.  Set.  Adrenaline rush!

I barked at Annie to go and get the hubs, and then we took off.  We arrived at this park that runs along the Susquehanna River.  It's beautiful...normally.  On that day though, it was an ugly beast trying to take my baby.

We drove all over the park, and could not find them.  We parked near the boat launch, and got out of the car to try to find them that way.  While I walked along the top of the bank, the hubs and Annie hiked along the bank until the hubs sank in mud, so they came up and walked along the grass lining the riverbank, trying to see Laurie and her community worker.

Then a really panicked call came, because Laurie had gotten into the river and her worker had gotten stuck in the mud going in after her, and could no longer reach her.  Annie kept saying over and over, "Aren't you glad she learned how to swim last summer?"  Yes, Annie.  Yes.

Finally, the hubs spotted them about third of a mile from the boat launch.  Laurie was chest-deep in the river, but wasn't really going anywhere.  The hubs ended up going into the water to get her, and was able to push Laurie out to where Annie and Laurie's community worker were waiting to catch her.  However, he then became stuck himself, but managed to pry himself out after a bit.  While I ran (yes, RAN) to get the car, they managed to get Laurie up to the top of the bank.  Both she and the hubs were a complete mess, covered with mud from head to toe.  Her worker was muddy as well, and Annie was a little affected.  Other than the mud, Laurie was no worse for wear.  While I managed to remain calm at the time, I still have nightmares.

Looking back, the only thing we did "wrong" was not call 911.  I was going to do so, but the hubs had my phone because he was trying to keep her community worker talking while he looked for the two of them.  911 is on my speed dial now...

So this is one of those situations I've always dreaded.  The one where Laurie has decided to explore the world on her own, without regard to her own safety and well-being.  The one where the exploration leads to the river, and she decides that it's a great day for a swim in that icky, murky water.  The one where I'm nowhere near her to prevent such things from happening.  It is precisely this potential life threatening situation, which became stark reality, that makes me the ΓΌber-control freak that I am.

I have always looked at the big picture before we have gone ANYWHERE.  When I do so, I begin to think in flowcharts (If we go HERE, then THIS might happen.  If THIS happens, then THAT will have to happen. And so on...), and in terms of the minutiae of the minor details that go along with anything we do with Laurie.  It is the reason that I don't relax, that my mind is constantly racing.  It is the reason that I have a hard time with simply "going with the flow" (I tend to overthink everything).  It is the reason I'm not as spontaneous as I would like to be.  It is also the reason that both girls are usually safe and happy, and that is far more important to me than anything else.