In going as far back as I could to trace Ronan’s very first assault to his health and his body, I was shocked.  I felt like I was up against much more than I could ever handle.  I hadn’t yet been exposed to the next organization that Ronan would encounter, but it was soon time for me to learn how much more reading and learning I was going to have to do.  Like a line of dominoes, the medical problems Ronan had only started what was to also affect his whole being.  These issues toppled over into his educational needs.  For those of us affected by the half-assed effort the educational world attempts to provide for our very complex but highly intelligent children, it adds another layer of stress, hardship and worry.  Poor services, inadequate special education and unprofessional professionals are what some of our children are provided.  Over time I’ve learned that Ronan and other children like him have become just a number in a system too tired to care about real human beings. 

WE THE PEOPLE

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.  All of this could have and should have stopped when that first child had an adverse reaction to a vaccination.  Unfortunately, that child, and the thousands that have followed in his footsteps, has forced the rest of us into action.

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.

WE includes countless (and increasing) numbers of families who can’t afford to financially support their children’s medical, behavioral, nutritional, educational and psychological needs.  But, what else are we supposed to do?  Who else is willing to step up?  It takes a solid rock of a human being to do what is required daily to keep our child with autism alive.  And, because so many of our children have different issues, it takes some individual and inventive tweaking to create a safe house, an appropriate educational program or ideal (and affordable) therapy system to work.  The emotional stress about the financial stress is a huge burden we constantly face.  So are the bills and the struggle to pay them on time.  We are dedicated to make all of that happen and are therefore forced to continue to feed money into the autism maintenance and recovery fund.

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.

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.

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 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.

WE includes countless (and increasing) numbers of typical siblings of affected children who have witnessed the horror and neglect their brother or sister faces.  These siblings will be stronger because they aren’t going to sit still and watch the system fail their family.  My oldest daughter has seen an eye full of what her brother has to endure.  She now recognizes similar children on our outings,“Mom, I can see that boy has some special needs.  He does stuff like Ronan does.”  We usually make friends quickly with the parent and my daughter offers to help.  Just last week we met with a family who had multiple children with special needs. I later asked my daughter what she thought of them.  Her response was, “Good.  I liked being there, the kids were really nice.  I could help the Mom, too.”  You can’t teach the compassion these siblings are going to gain naturally.  I think in the future the careers these siblings will choose, and the politics they will follow will be directly related to what their brother or sister’s lives brought to them. 

WE includes a small but hopeful growing number of business people, statesmen, celebrities, neighbors and friends.  We have witnessed the negative aspects of what caring for a child with autism includes.  We are not going to stand for the deception and delays any longer.  Too much is at stake, not just for us, but for the typical children as well.  Too much has been spent on our children’s incredible needs.  Thankfully, in sharing my own son’s story, some of my friends are stepping up and telling their doctors to stick it.  They are asking those questions I never knew to ask in the exam room.  They are waiving that recommended vaccine schedule because they know they can.  They’re also saying thank you to me for doing what I’ve had to do and say for Ronan.  Two friends have typical children, and I mean t-y-p-i-c-a-l. It’s dreamy really.  Both are interested in how to make things right for the rest of us because they’ve seen all the wrong I’ve had to deal with.  I’m so thankful I could encourage both of them to check out like The Canary Party because they are sick and tired of seeing the crap that they’re being fed in their own medical practices.  It’s up to them to join the cause, but I have a feeling they are more than ready to join because of the way we have been treated. 

AH, YES. THE POST SCRIPT

I’m no stranger to making my own bold statements.  For years now I’ve taken “pen to paper” in the hopes of educating my extended family, my friends and anyone else willing to listen.  I’m not looking for a pity party, although some days, a good cry does me just fine.  I want to help people see what life is like for Ronan and to know that they have a chance to say no to the madness that invaded my family’s life. 

The “we” I write about in Ronan’s stories includes a team of go-getters who have gone through all of the above. “We” are tired because of it.  The “we” I have in front of me doesn’t take a break and hardly ever slows down.  “We” have made a commitment to go forward always.  The “we” I constantly strive to be is full of determination.  The “we” I’m constantly surrounded by includes Ronan and his desire to learn.  His intelligence exists—it’s in there, in his broken body.  It’s in there. 

“Autism… we pay an enormous emotional, practical and financial price to deal with the increase in this disease...” 

Autism.  It’s enormous.  And, it’s not going away because “we” are still being deceived.

Autism. It’s emotional.  I’ve never cried harder about anything in my entire life before.  I’ve also never been as proud as who I’ve become because of Ronan.

Autism.  It’s practical.  Until our practical becomes their practical, we’re still the only ones affected by it.  I’d rather say autism is practically everywhere because it’s taking over our country at such alarming rates.  Practically everyone should be doing something about it.  Hopefully everyone will recognize that soon.

Autism. It’s financial.  Well, yeah, it is. It’s financially draining.  It’s raping families’ pocketbooks because of how ridiculously expensive it is to find and maintain appropriate education and therapy.  You’d think insurance might help with some of the medical components of autism, but it doesn’t.  The clauses in the law are so sneaky.  Most everything that benefits the child remains an out-of-pocket expensive.  Sadly, everything is costly for caring for a child like Ronan—from the special diet foods, to the well-trained care providers, to the security and safety measures we have to have in place to keep him from wandering and dying in traffic or a pond. It all costs so much. 

The financial aspect is an unfair slap on the face of every family on the spectrum, but because it’s such a complicated disorder, we seem to fall into several financial traps while we look for help.  Some autism “experts” raise their costs because unsuspecting parents are willing to pay them.  Parents want to do the right thing for their child always and some people tap into that need negatively.  I’ve fallen victim to paying too much for nothing, and I’m embarrassed that I let my own emotions get in front of Ronan’s needs. I’m ticked as hell that someone thought they could bank on my desire to find treatment for my child.  I paid a hefty price to find professional help for Ronan and got nothing in return. 

ONE MORE THING

Autism, vaccine injury and environmental toxin exposure are here.  They have been for a long time and continue to take away our precious children.  If we add one more unnecessary thing to their bodies, I fear we may never be able to undo the serious amount of damage that has been allowed to be done.  We don’t want to be nagging, annoying and repetitive.  We’d like things to be easier, quicker and happier.  We love our children from here to the moon and back. We’d do anything for them and have done a whole lot more.  We’d love to have the chance to go back and make most of this go away.  But, we can’t.  So, that means we are going to nag you, annoy you and repeat over and over and over again that it’s time for a change. 

Our children need help especially before the next generation joins them with their own set of reactions.  Before that happens, we will continue to look for hope in our situation--hope to reduce, remove and recover from the madness that took over.  We will always carry some small piece of hope.  We have to because at the end of today, we’ve still got to help our child get through tomorrow.  One more day.  One more chance to help.  One more chance to hope.

Cathy Jameson is a Contributing Editor for Age of Autism.