What is advocacy? How does one effectively advocate for a cause? I mean, I consider myself and advocate of Cerebral Palsy, as my son has Cerebral Palsy (CP) but I want to make sure that I am advocating accurately. I read a million posts on this site about Autism, and every other post I read makes my blood boil. According to most posters, Autism deserves more research money because of the number of children affected in this country, or because they feel like the federal government caused the autism because of vaccine poisoning.  And I really feel as though the people writting those posts don't fully understand the history of Autism,  and nor do they care when they are presented with absolute facts about Autism.

Autism is NOT new, most people believe that it is, but the word is new, that is all, previously children that were autistic were refered to as Ferral Children, Mentally Retarded, or Emotionally Disturbed. In 1943 Leo Kenner coined the phrase "Autistic" He noticed cases stemming all the way to the previous decade, and from there the history begins. There have been all kinds of outrageous theories about what causes autism. One doctor even thought that autism was caused from an unloving family, especially the mother. He called it the "Refrigerator Mother Syndrome" they even took autistic children away from their mothers and put them in foster care, or they took them to a special school that was set up to treat autism. This school even had a statue in the court yard that was a woman figure, that was to symbolize the child's mother, these children as part of their "therapy" were encouraged to pee, spit, what ever they felt like doing to take their hate out on their mothers.....TOTALLY misundertood.

 My point in this is to debunk some myth that autism is new, or that the rate is rising due to vaccinations. First off, there is such a thing as Mercury Poisoning, it exibits the same symptoms of autism, but is NOT autism, just as Lead Poisoning  does the same. Everyone is always so shocked at the number of children diagnosed with autism, well first of all not 1 in 150 children have autism, 1 in 150 are on the spectrum, the spectrum is made up of a number of different diagnosis, including PDD (Pervasive Development Disorder) PDD-NOS, Hyperlexia, Sensory Processing Disorder, and Aspergers Syndrome.

Now that I am done with this part, I would like everyone to know that autism has touched my life, I worked as a one on one aid for a couple years in a school in Naperville Illinois that is dedicated to all children with Autism or other behavior disorders. Through this school I met many MANY wonderful children and we were continually required to go through continuing education programs to keep us informed on autism, and I went above and beyond because the children amazed me. Also in the back of my head was the thought that my son Cody would end up with some type of Autism, and he does have Sensory Processing Disorder, thankfully it is not as severe as some of the children that I knew, but all the same.

But through my advocacy journey to promote my own cause which is CP awareness I have decided that I don't like much singling out one group of children over another....how do we decide which illness or disorder deserves more attention, more funding and more understanding from the general public. I believe WE ALL DO! My son may never run, he may never be able to walk a mile, he may never be able to eat properly, or dress himself, or express himself appropriately. Many children with CP are non verbal, luckily my son is.

 Today I was at the laundry mat, and as I was pulling my clothes from the dryer, I hear a commercial on the TV about autism, and their struggles and their underfunded research, and it just makes my blood boil. Yes 1 in 150 children have it, but 1 in 278 children have Cerebral Palsy, and we don't get HALF of what autism gets, the NIH reports that in 2008 Autism got in the neighborhood of $127 Million Dollars for research, Cerebral Palsy, Down's Syndrome, Spinal Muscular Atrophe, Cystic Fibrosis etc, were all in the ball park of $16 MIllion Dollars. Where is the justice in that? Where is the fairness in that? Why is it fair that Obama plans to give autism research and education $386 MIllion Dollars? What about the rest of us? What about my son? What about my friends daughter that has SMA, who can die at ANY MOMENT, what about my friend whose son has Cystic Fibrosis? Her son will likely die before his 30's....What about all the other very isolated disorders that only affect a very small population, like Retts Syndrome? Are our children's lives less important? I read a journal post recently, and it really got me thinking after reading some comments about how the reason Autism "deserved" more is because it's new...well first of all untrue, second of all who cares? My point here readers is that we should all educate ourselves, don't stare at a child, or tell your children to stay away because "he's sick" because it's not true, your children can't catch anything from any of our children, our children want to live normal happy lives just like you and me. All our children deserve to thrive in school, they all deserve to be treated fairly, and they all deserve to smile, laugh, and be carefree. We as parents should be able to enjoy our time with our children not spend it defending their rights. We all need to band together, every mother of a special needs child, because the journey isnt' pleasant for any of us, we all suffer, our families all sacrafice, and we are all deserving of more. Until every child is healthy and happy.  So please next time mothers of autistic children, next time you are feeling that you are being slighted, or being treated unfair, remember it's not an exclusive club, we all are going through the same as you. And we want our voices heard too, and there should be plenty of room at the table for all of us. Thank you.

Add A Comment

Comments:

erfrye
Jun. 1, 2008 at 8:42 PM Very well said.  I agree 100%.

Message Friend Invite

Mikal...
Jun. 1, 2008 at 8:55 PM I agree 100% as well!  

Message Friend Invite

roolynn
Jun. 1, 2008 at 11:12 PM

As the mother of an autistic child I can understand your frustration.  However, just as these posts written by mothers like me make your blood boil, a post like this does the same for me.

Do you think that we haven't fought long and hard to get people to listen to us?  I'm not saying that you don't deserve the money or the research time or whatnot - FIGHT FOR IT!

Make your voices heard.   Engage in letter writing campaigns.  Educate those that don't know.  Don't be defensive.  Don't compare yourselves to autism.  Do your own thing.  If there is something that the autistic community has done that has worked for them, adapt it to your own cause.

I understand your frustration with not getting the money or the recognition.  I agree that it's not fair.  I get all of that and if I could fix it by waving my wand, I would.  But I can't.  So I guess it's up to you, and families like yours, to do whatever it takes to get funding you need. 

Remember:  The Squeaky Wheel Gets the Grease.

GO FORTH AND BE SQUEAKY!

Message Friend Invite

erfrye
Jun. 1, 2008 at 11:23 PM

roolyn

 You assume a great deal.  You assume we don't Fight for it.  You assume we don't write letters, raise funds, educate, promote, do our own thing. 

You know what they say about ass-u-meing right?

Message Friend Invite

Anonymous
Jun. 1, 2008 at 11:36 PM

That is a really good point roolyn, except you are missing the fact that we DO write our letters, I just completed a letter writting campaign in March of this year, and do you know that I recieved a letter back about a disorder I didn't even write about? I admire what Autism Speaks has done, they are who I look to for parent leadership, because they have done a great job, the problem is they have done SUCH a great job that no one wants to listen unless Autism is included in what you have to say...did you know that for a second year in a row, a group of mom's that I talk with on a regular basis, had planned to go to DC to talk to the congress about giving the CDC $10 Million Dollars to start an Epiodemilogical Study and National Surveillence ? the SECOND year, and this year they dont' even get heard, no one will be speaking before congress regarding ANYTHING medical when it comes to the budget for the next fiscal year, because the world is over wraught with worries of oil, war, and the economy. So again we have been slapped in the face, and yes we do have a plan coming up to try to get some attention from the hill, but again it's not as easy as some think. But I assure you, it is being done.

Anonymous (Original Poster)

Mikal...
Jun. 1, 2008 at 11:45 PM

roolyn

Like erfrye said, you assume a great deal.   Ya know what!   I wrote a letter to my local Senator asking for his support in Washington.   I spoke my mind, I opened my heart and told him how CP affects me.  I gave him statistics.   He wrote me back, "Thank you for contacting me about Childhood Cancer."  WTH!!  
Currently, no one hears or listens about any other condition unless it directly affects them, but they'll listen about Autism!   It's all about Autism.   It's about the prevalence, 1 in 150 children are affected by Autism.   That's not true!   1 in 150 children are on the Autism Spectrum.  
And if it's all about prevalence, why isn't anything being done about Cerebral Palsy?   You know why, it's because we don't have a Jenny McCarthy.   Autism would not be what it is today if it wasn't for her, however that's just my opinion.   Parents of Autistic children have done a wondrous job of advocating.    They did NOT do it alone!  
The fact that the presidential candidates are promising millions of dollars a year to Autism and nothing else is completely and utterly ridiculous!
You say we shouldn't compare.   You're right!   Why are we comparing?   We're comparing because we're stuck in a competition with you and it's not by choice.   Every single condition and disability have to compete with Autism.   That's ALL there is to it.    It's crap.
The point is Autism is NOT the epidemic!   It's NOT the most devastating thing! 
Then I hear people say that Cerebral Palsy has been around much longer than Autism.   Which is completely untrue!   These women need to get their facts straight!   And if it were true, that does not change the need!   Everyone deserves just as much as Autism does.  

Message Friend Invite

Holdt...
Jun. 2, 2008 at 12:40 AM

I will contribute my point of view here. My daughter has CP and SPD. Both challenging in their own right. I do agree, 100%, funding should be equal across the board! I find, personally, the education of cerebral palsy lacking. Through all the therapists and all the doctors, no one could quite put their finger on what type of cp my daughter has, and most just completely disagreed on the basis that she is not stiff. I find disgraceful that the medical industry has not taken the time to educate themselves on all the aspects of these conditions. They all seem to be fully educated in all aspects of Autism, though. This is a situation that needs to be fixed. Instead of people replying to this post, by bashing. What you need to do is help...if we all can band together for the sake of all childhood conditions, EVERYONE WILL BENEFIT!

 

Message Friend Invite

cpmom610
Jun. 2, 2008 at 12:44 AM well said i am with you 100%

Message Friend Invite

MOMMY...
Jun. 2, 2008 at 1:22 AM Honestly I have has these feelings in my heart for a long time as well ,if you type cp awareness on ebay all you get is a car magnet and a bracelet ,if you type autism you get literally thousands of postings and it can make people have bitter feelings ,autism is like the new adhd honestly ,everyone knows about it and every teacher,specialist and doctor is jumping to label every child who has a speech delay or a behavior issue with it and I know their are many children who truly have autism just like  many truly have adhd but I wish people would look past the hype and realize that all special needs kids need funding and all special needs kids matter not just one disorder or condition .We all need awareness for our children !!!!!

Message Friend Invite

mommy...
Jun. 2, 2008 at 7:11 AM

Beautiful post!!!!  My angel is surviving CP, that is how I refer to it lately.  He suffers terribly from seizures, pneumonia, and contractures.  He is non-mobile, non-verbal and chair bound.  I have many friends that have Autistic children and I have heard them tell me that at least my son lets me touch him.  So I should feel sorry for them?  When their kids walk and eat and breath and see without assistance?  My point here is not tha my son is WORSE or their child is WORSE.  We need to stop comparing our kids sicknesses and struggles and just realize that as parents of special needs kids, we all fight BATTLES!!!!  No matter how big or small, they are battles non the less.

I am fully behind this post.  I feel that every disorder out there deserves the same research and attention.  There are battles out there by some parents who still don't even know what they are fighting becuase there is no research at all for their kids problems.

How much is given to Wolf Hirschhorn or Mitochondrial disorders?????

So why don't we all just agree that we all need help from the government to help our kids and stop fighting over who derserves it more.

Message Friend Invite

Want to leave a comment and join the discussion?

Sign up for CafeMom!

Already a member? Click here to log in