Remove, Replenish, Repair, Restore

Remove, Replenish, Repair, Restore - this is the mantra modestly scribbled on the white board at the DAN! doctors office on our second visit to see him about the boys.  It has been a month and a half since we first took them in and we've done our best to keep up with the regimen of Vitamin C, Vitamin A, liquid vitamins, probiotics, fish oil, Calcium, DMG, Q10, and oh yeah, they have to be fed too.

When we first started I thought to myself, no problem they'll just take their vitamins and it won't be a big deal.  The first night I gave each one their probiotics to take with their milk.  I guess I take for granted that I know how to choke down a pill like it is second nature.  AJ took it like a wild man chewing his gel-cap up like it was steel.  Jonah's 20 minute ordeal of spitting up water and seeing the contents of his pill everywhere and not getting it anywhere in his body made me reconsider how to administer.  Opening the capsule and dumping it into a smoothie it is.  That is how lemon/berry/fish oil smoothies were born!

So, we've been doing all this since March and we took a morning off sometime in April so that Joe and I could take the boys to get their blood drawn for the Age food sensitivity screening and Hard Metals screening tests that I had purchased from my doctor in Westlake almost two years ago.  As you can see, the thought of getting blood taken was a deterrent for us.  AJ went first and was a trooper, Jonah, on the other hand was a little more resistant.  Let's face it, he screamed his head off.  Crying it hurts!  It hurts!  Take it out!  Take it out!  It got so bad that I had to take AJ outside and we could still hear him.  Of course this threw AJ into a spiral as well so here we were with two screaming kids, but the blood got collected and all was right with the world once more.

So, this past week we finally met with the doctor to get the blood results.  As we have always known, our boys are polar opposites.  Jonah's little body still seems to have absorption issues. His vitamin levels were very low, but on the bright side, so were his levels of hard metals including arsenic, lead, and mercury among others. 

Jonah's test results:

AJ on the other hand, has great vitamin levels, with one exception.  The downside being he is harboring very high levels of heavy metals.  So, after discussions with the doctor, we will likely start thinking about chelation treatments for him here in the next couple of months. 

AJ's test results:

So, we left the doctor's office with a whole new round of supplements, the next step in the probiotics, new and additional vitamins, and of course B12 shots that the boys must do twice per week.  We agreed to a division of duties, Joe will do the injections; I get to do the stool samples for their next round of tests.  I can't wait.  I'm sure to have a blog post about that.  

Did I mention you'll do anything for your children?

Autism Parents - We Are Not All Sheep

Okay, so the blogging thing is time consuming and I haven't been the avid blogger that some of my friends have been.  Did I mention I have three jobs?  Well, when I do find time to read something that doesn't involve work still has to be done at lunch, sitting at my desk.  Suddenly I am seeing the correlation between my lack of activity and schedule. 

When I do actually get a chance to do a little reading and review what's being "twittered" about I often follow links to various articles and message boards.  I happened to follow one of these links from twitter to a website for Gawker who happened to be ranting that day about Oprah and Jenny McCarthy.  

As many of you know, people either love her or hate her, and in the autism and vaccine communities it is especially amplified.  Since vaccinations are such a hot topic this day in particular the responses to the post were especially pointed.  Sadly as with many message board posts there were very few thoughtful posts.  Two which were particularly disturbing to me:

“Jenny McCarthy is the main example of a group of people called "Science-tits". They use the fact they have mammories to spout off the craziest/dumbest things in the world, and people believe them. What are Jenny's credentials? Her main claim is she has "Mommy Sense", which is how she diagnosed her child as Autistic, and also how she cured one of her children of it.”

“I feel really bad for these parents. Their need to find a cause for their children’s' condition plus one bogus study in a very prominent medical journal that was later debunked and retracted by the medical journal has led them down a dead end path.”

Clearly these people cannot understand the magnitude emotionally or psychologically of what a parent must go through not just in the initial stages of learning about their child's diagnosis, much less what it means to live with it and deal with these behaviors, setbacks, and the reality of what a diagnosis of autism means.  For some of us, there is a glimmer of hope that our children can and will become functional members of society and that their hopes and dreams can be fulfilled.  The trials, tribulations, and hopefully triumphs that we as parents and those of our children are what change us and make us who we are regardless of whether and intervention we try with our children is successful.

Yes, inherently, just as any parent would do, we are willing to do ANYTHING it takes to ensure the quality of life for our children and our family is the best it can be.  When I say anything I really mean anything.  My kids have Berry/Lemon/Fish oil/Probiotic smoothies before bed just about every night and they still love me.

However, for people to dismiss us as sheep who will buy anything that anyone is selling out of desperation does not truly know a parent of autism.  I would never blanketly praise Jenny McCarthy, (or any one person for that matter), because it is simply not that straight forward. 

What works for one child with autism does not work for another.  We are lucky enough to have not one but two beautiful sons with autism, and they are about as polar opposites in their abilities and responsiveness to the therapies we have exposed them to as anyone can be.  But we are not some pathetic population who is blindly looking for anything to make our children normal.  I don't want my children to be normal, I want them to be happy, successful, and themselves. 

Parents of children with autism are a diverse group.  We are educators, lawyers, engineers, entepenurs, and even stay at home moms.  We think for ourselves, we continue to educate ourselves and we listen to our children and each other.  The bottom line is no one has the answers for our children least of all us.  We must seek out the information that best suits our situation at the time given the current knowledge and available therapies.  

Uninformed and pitiful generalizations and pity for our situation are not necessary.  Don't feel sorry for our situation, or judge our choices, keep an open mind and be willing to learn from it.