Monday, August 8, 2011

Musings on a post...

Apologies for the lack of posting, as my mother pointed out yesterday.  We’ve just been doing same old same old – finishing out the summer. Dominic starts D11 back up next week.   Nothing tremendously exciting going on.

So, I’m going to heavily quote a blog post I just read, because it gave me goosebumps and it needs to be spread far and wide.   The whole post is worth the read, but here are my comments directly regarding Dominic and our situation, between her quotes.

“I know we do make some great connections and progress here in the autism is treatable community, but it’s going to take more than just our little village to set things right for our children.  We never should have had to work so hard.  We never should have ever have had to band together.  We never should have had to think, eat and breathe autism or vaccine injury or environmental toxin exposure.  But, it is daily that we work so hard, and band together, and eat, sleep and breathe about their diagnosis…”

I cannot count the number of people who are amazed at the facts I’ve picked up since Dominic’s regression.  Its because I’m spending 5-10 hours  a week reading studies, reading parents boards, reading articles… all trying to find the thing that will help Dominic.   Dr K rolled his eyes last time I was in there and I mentioned that I’d seen xyz reaction discussed online.  Thing is, we talk.  We compare notes.  We are not allowing our childrens health to be only managed by someone with the letters MD behind their names, we are educating ourselves to take back this role.

“..DeCock’s wrote, “… The Scientific American suggests that soaring rates of autism are linked to our constant exposure to toxics. Again, we pay an enormous emotional, practical and financial price to deal with the increase in this disease...”
When I became a parent of 1 in 166 children affected back in the early 2000s (which is currently quoted as 1 in 91 children diagnosed), I also became a vocal member of the “we” that DeCock says has paid an enormous emotional, practical and financial price of the disease.  For those out there who don’t know what “we” are up against because they might not directly be involved in the caring for a child on the autism spectrum, I would like to clarify who I believe the “we” is:
WE includes countless (and increasing) numbers of families going bankrupt to care for their children affected by that old pesky exposure to toxins (aka, a diagnosis that eventually gets labeled as autism).  If you don’t believe me, be brave and ask one of us parents how much it costs to care for our children for just one month.  It’s no small change, and it’s a lot more than you think.  Go ahead and ask. I dare you.”

You don’t have to ask, I’ll tell you.  If we were doing the full recommended amount of therapy, we would be spending $5k a month between therapy and medication and supplements.  We are only able to do half the recommended therapy, so we’re at about half that. Out of pocket.  Every single month.   I can stretch a dollar until it begs for mercy, but when things happen (like the clutch going out this weekend to the tune of $1100), we get very very nervous.

“WE includes countless (and increasing) numbers of families who are tired, both physically and mentally.  We are tired of the rotten looks, the unwarranted advice and the lack of compassion from family members (yes, family does turn on many in our community).  Some neighbors understand and pitch in, but those nosey shoppers, untrained school district employees or lackadaisical medical personnel who think it’s just bad behavior our kids are suffering really get us down.  My child didn’t choose to be this way, but others sure as heck can control their hurtful words directed toward him.”

Fortunately, Dominic’s issues are much less about behavior than they are about communication and fine motor skills.  Dominic only has a few behavioral issues each day anymore (tho some of them are doozies.  This weekend he butchered a spider plant while jumping off his trampoline to grab for its leaves… ).  It’s the speech, tho, that we’re struggling so hard to get back. He is still not where he was verbally pre-regression.  I’m hoping that when we start ST back up in a few weeks at school, that they’ll have decided he’s finally making enough attempts to speak that they can start working on his articulation issues because he has major problems with f/v/th sounds.   We do get the unwanted advice too, which is frustrating, because until you’ve walked this with us for a few weeks, you have no real idea what is going on.

“WE includes countless (and increasing) numbers of families who have turned to state assistance programs specifically designed to help.  But, we are turned away because of wait lists, budget cuts, misfiled paperwork or unreturned phone calls.  When that happens, and that happens to many of us, the emotional faucet of stress is in full stream because honestly, sometimes there really is nowhere else to turn in a time of crisis.”

Dominic is on a waiting list for the Medicaid CES waiver.  We’ve been on for 2 years and probably have another  3-4 before we will be even close to getting it.  Every 6 months, we get a phone call to see if we still want to be on the list (um, YES), and last summer we had the ridiculous IQ test we had to do to keep our place (hi, how can you actually do an IQ test on a non verbal child).  Frankly, we’re not holding our breaths that we’ll be able to keep the ship afloat until we get the waiver. What will likely happen is we’ll have to stop ABA therapy, and do the school district full time until the waiver comes in.  And then hope he still qualifies.

“WE includes countless (and increasing) numbers of families who continue to beat their heads against the wall because if we don’t care for our own children, no one else will either. True, you have to ask someone to help you out first, but who else can a parent trust to wake up early to make the GFCF meals, to clean up the poop smears on the walls again, or knows how to calm the sensory overloaded child who can only calm himself by hitting his stomach over and over again? Who else is willing to babysit a 14-year old in diapers?  Who?!  It’s no joke when groups of parents start talking about creating a farm or commune or buying a ranch to house several autism families.  We all understand each other and have already gone to the ends of the earth and back for our children.  It would make sense to band together in a long-term living situation.  But, where will the money, time and resources going to come from to create this autism safe house for many, this utopia of hope?”

We are very blessed to have several regular babysitters who can do respite care for us.  Who we trust.   Other parents, when seeing what we do all day have expressed shock and awe over the level of supervision we provide, so we are not confident that Dominic would be safe with them. I do have to admit the idea of an Autism family ranch ... with really high border fences... is appealing.  At least we'd all speak the same language.

“WE includes countless (and increasing) numbers of parent-turned advocates who didn’t expect their life to be completely turned upside down because of their child’s diagnosis.  Sure, some parents might have knowingly adopted a child with autism, and my heart swells with pride for them being so giving. But, many of us didn’t go to the doctor’s office asking for the contents of that vaccine vial to trigger our child’s reaction, or the allergies, and the attention and behavior problems or their autism.  We are on a new path because of those reactions and are ready to pay it forward.  This is the very reason I continue to share own my experience--so you don’t ever have to.”

I beg every woman I know who is pregnant to do their homework on vaccines – and if you’re going to get them, ask these questions first.  We can tie Dominic’s regression / brain injury to getting his MMR while in full yeast flare.  No one told me cracked and bleeding on the outside meant cracked and bleeding on the inside, so I tell everyone. I never wanted to be an advocate, or carry around a soap box to stand on. But this is what I do now.

1 comment: said...

Autism is expensive. That is for sure. When we look around and compare materially what other people have, we often come up short, but then we remember we've invested in our daughter. She's our investment.

We do understand about the clutch.