The Big Let Down

Autism Speaks is by far the largest organization in the US - and one of the largest in the world - dedicated to autism-related research, funding, and related activities.  They were the one of the first organizations I turned to when my son was diagnosed with Autism.  A national Autism Speaks Walk is done annually- with walkers and families raising MILLIONS of dollars. My family and friends have participated in this walk in Michigan for 3 years- raising over $3000 ourselves.  We did this to help further research, help with grants for families needing help (ours included) and help with insurance reform.


We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.Sounds amazing doesn't it? What a wonderful initiative. But then I started hearing rumblings in the Autistic Community. Things about all the money being raised by families like mine for AS was not being spent on what it was supposed to.  According to the 990 Tax forms- AS had 28 employees who made over 100K for 2009.  The total that was spent on family services - $814, 016. Total payroll? $16,565,364.

The total revenue generated by Autism Speaks- $45,524,396. These are not numbers I made up. These numbers are all part of the public record that you, me or anyone can see. 

Now- I know it takes money to run a company. But when the President makes over 300K a year and there are at least 28 employees who were compensated over $100K  and the money spent in help for families is a fraction of that- I have to start questioning myself. The money that mine and thousands of families made- where did it go? To fund travel expenses? Advertising campaigns? Did any of the money I helped raise help another family- did it help mine? No- it didn't.

 I  applaud the Light it Up Blue Campaign in that it does promote awareness for the growing epidemic that is Autism. But we are beyond awareness. We need more understanding- we need more programs in place for Autistic adults aging out of school. We need more and better insurance reform in ALL states.  We need research into causes- to STOP these numbers from growing.  What we don't need is more expensive advertising, ridiculously overpaid CEO's, and millions in research grants that could been going to "connecting families to resources". 

I have been a voice for Autism Speaks for 3 years. I have walked, fundraised and made people believe in their cause.  I have done all of this under the assumption that when we needed it- we could go to them for help- probably financial- to get my son much needed social skills training, or special swimming lessons so he does not become a statistic, or whatever else AS has promised to help families connect. You know what I have got? Brochures- lists of agencies in my area. handy checklists and of course- asked to raise more money. Things I could have got on my own.I HAVE applied for 2 grants- both for $1000- both to help my son- when we couldn't afford social skills classes and insurance didn't (and still doesn't) cover it.  I was thanked for my interest and told that due to the volume of requests they had to assess the severity of each case and award grants to those in greater need.  That is fine- I know that I am lucky, my son is lucky, he does speak, he can care for his basic needs. But- if all the money that was being raised was being  put to use where it was supposed to be- my paltry request of $1000 would have been a drop in the bucket.

Thanks for the big let down Autism Speaks. I defended you until it became apparent that you didn't deserve it. For all the parents out there that disagree with me- and AS HAS actually helped- great. But there are so many organizations out there. Please- do your own research into each and every one before throwing your money or your time at them. They are not all what they seem to be.

TACA
The Puzzling Piece
National Autism Association

What in the heck does all this mean?

Today is World Autism Awareness Day. I have seen a lot of people wearing blue - for the Light it up Blue initiative sponsored by Autism Speaks. Facebook is buzzing with article, blogs, personal stories and so much more- it is heart warming. I am wearing my Autism Puzzle Piece necklace from The Puzzling Piece and have had several opportunities to speak with people and tell them what today is all about. One of my other blogs, Son..you have Autism  was featured in my local paper which got a lot of attention as well. Autism Awareness Month has started with a bang for me- and I am hoping to keep that ball rolling.

I know what autism means to me and my family. I live it, breathe it, sleep it. It is not a mystery to me and I can tell anybody that asks me what Autism means to me.  It means doctor appointments, it means vitamin supplements, it means sleepless nights, it means strict routines, it mean no scratchy tags in shirts, it means evaluating situations and deciding if my son can handle all of the stimulus, (usually not), it means IEP's , it means fighting for education, it means continuous advocacy and never settling for less for my son. It also means making sure my other kids know they are loved, special and in no way defined by their brother's Autism- any  more than he is defined by it. It is a HARD job..being a parent itself is hard- raising a child with Autism just upped the ante. 

I have many friends with children on the spectrum. I hear their stories, relate to their stress,  celebrate their children's accomplishments,  discuss treatments, doctors, extracurricular activities and so much more So I decided to ask my online friends- how has autism affected you- what does it mean to you? And this is what I want to share today- one of the responses I received. It isbeautiful. It is heartbreaking. It is hopeful. It is absolute love. Thank you Monica Ternovan - Ty is lucky to have you for his mom. I raise my wine glass to you- let's finish the bottle together some day.

I see the world differently. I evaluate every sound, every lighting scenario. I scan for triggers, ones that I still cant always identify but I am constantly vigilant to try and decipher. I have learned not to sweat the seriously small stuff. I have let go of "societal norms" and grabbed hold of what makes life more bearable/pleasant for my kid. I've watched friends and family back away from us and declare it "impossible" that he is on the spectrum as if somehow "willing it away" will make things better for Ty. I have released my expectations and learned to live each day with an attitude of success and positivity, often ending my day with a weary sigh and a glass of wine. I used to say I wouldn't be like my parents, drinking in the evenings after a long day, but now that one glass is my solitude, my moment of reflection, my partner in this chaotic journey. I am learning a whole new language, one filled with terms like "on the spectrum" and "triggers" and "being unable to process". I don't see that child in the Wal-Mart having a meltdown as "bad kid" or that mother as a "weak parent". I wonder if she too is struggling with living along side her child on the spectrum and trying desperately to maintain some sense of control of her life and that of her other child(ren) while giving herself over to the fact that she is forever going to see the world in terms of how it might affect that child's autism. I have gained a deeper love and compassion than I ever thought I was capable of, though tested over and over, I am frequently surprised by my own ability to let it go like "water on a duck's back".

Raising awareness...not celebrating.

So if you read my last blog  you are now aware that April is Autism Awareness Month. You are also aware that I intend to use platforms such as my blog, my Facebook page and my big fat mouth to shout it from the rooftops. I want to make people aware of the epidemic that is Autism. I don't celebrate it. I don't know many who do.

I celebrate my son's accomplishments. I celebrate his milestones. I celebrate his amazing little self- but I DO NOT celebrate the fact that he is 1 in 110 children ( 1 in 70 boys) that are diagnosed with this disorder.
I am not an advocate for a "cure" necessarily. I know many who say "curing" their Autism would be taking something away from them- making them less than what they were. These are adults I have spoken to that have lived with the disorder and are functioning in the world now.

But when I talk to the mom who is still changing her 10 year old son's diapers or the dad is holding on to the hope that his daughter will one day make eye contact and say she loves him- I have to say would a "cure" be so bad?  Hell- I want a CAUSE or CAUSES  pinpointed for the huge upswing in Autism- then perhaps a cause will lead to a cure and so on and so forth.

But in the meantime- I will be an awareness junkie. I will read, research, talk, write, walk and jump for Autism Awareness, I will shove facts, figures and stories in your face - just in the hopes that you will pass on that knowledge to someone else.  This is how awareness is spread- from me to you, from you to your spouse or friend and from them to someone else. I don't expect you to become and expert- I am not an expert - but I know a hell of a lot- and you could learn a thing or two from me. 

This is not a month to celebrate. This is a month to learn, and to teach.  Parents of autistic children, and adults on the spectrum are a wealth of knowledge that only want the rest of the world to understand.

Are you aware of awareness?

Next month is Autism Awareness Month. And as you all know- I have an autistic  child. So my blog and  my "mainstream" Facebook page will be all over it. I am aware of Autism every damn day- and I  post news articles, fundraising events, advocacy opportunities  and blogs concerning  Autism all of the time.  I share my son's life- his ups and downs and my joys and frustrations pretty much daily.  Just forewarning you all- that in April it will be a constant bombardment. My goal? To educate as many people as I possibly can about Autism.

 Like I said- it is Autism Awareness Day every single day at my house- as well as for anyone else dealing with it. Highlighting a month to be more aware, spread information and put the spotlight on things is a good thing- don't get me wrong- but how many folks (with the exception of those dealing with these things daily) remember squat about these things?  I feel it is my mission to bombard the masses (in my own special little corner here) with facts,myths stories, videos, and whatever else I can do until it is burned into their brain. And if people only remember one thing- just one- and share it with someone else, and they share and so on and so forth, then I have accomplished a small part of my goal.

So let me start by saying that many people (maybe you) rely on what the media tells you about autism. Let me say that the media representation of Autism is built on the most outrageous or sensational things just maintaining a grain of truth.   Not ALL Autistics are Rain Man- that is a VERY small percentage of what is known as Savantism and not all autistic are savants- just as all savants aren't autistic. Believe me- when the word Autism first came up with my boy- that was the first thing I thought of.  Yes- a lot of autistic kids and adults have an area of expertise- my son's happens to be about dinosaurs. He can remember a 100 different dinosaurs names, time they lived , what they ate, but can't memorize his times tables. Go figure.  It's just the way his brain is wired- and that's that.

Autism occurs now in 1 in 100 kids- 1 in 70 boys. This number has changed drastically even since my son was diagnosed in 2006. From 1 in 150, to 1 in 110 and now to 1 in 100. Damn. Scary thought isn't it? Now many will say that the jump in numbers is due to better diagnostics, increased awareness, etc. It IS true that Autism is a SPECTRUM disorder- ranging from the high functioning such as Aspergers Syndrome  and High Functioning Autism, to Severe Autism to PDD-NOS ( which is just a way of saying your child doesn't meet all the diagnostic criteria for Autism- but has enough so we can label them) and yes- to some degree there is some truth to the better diagnostics answer- but I really don't believe that is all there is to it. But that my friends is a blog for another day. 

So this blog is just a preview for the month of April.  I will be writing about different things about Autism, organizations affiliated with Autism. my giant let down by Autism Speaks and my mission to win my son's teacher an iPad for her class and so much more! I am hoping to get some guest bloggers  that I can showcase as well. Hint, hint people! Hit me up- I want to hear what you have to say! Even if you aren't a parent of an autistic child, ask me questions, give me ideas and opinions. It is what awareness is all about after all.

Moms Who Drink and Swear saved my life!

You know THAT mom. The one at the store who smiles at everything, speaks to her rowdy children in that sweet little voice and gives you that sad look when you yell at your own demon spawn for knocking that display over. The one who feeds her kids only organic, never eats sugary snacks and prepares a 4 course dinner every night for her perfect family. The mom whose idea of indulgence is a sip of Chardonnay at the husbands company party. The mom who would never dream of working outside the home and devotes every second to her over indulged children all while looking down her nose at the rest of us.  She never has that faint scent of vomit and Fruit Loops about her, and her clothes and hair are impeccable.  They are everywhere- Stepford wife/moms who would rather eat their own hand then raise their voice to their darling progeny.   I am NOT that mom.

I love all of my children. They are amazing creatures that blow my mind  on a regular basis. But they also drive me BONKERS!! There are days that I seriously can't take anymore of the whining, messy fighting, crying reality that is children. And I have lost it on more than one occasion and dropped a f-bomb (or three) in front of them.   And then one night a little over a year ago- while learning the intricacies of Facebook I came upon a page titled "Moms who Drink and Swear".Now I can't remember exactly HOW I came across it- but after reading the description I immediately was hooked.   The first few posts had me laughing so hard I almost spilled my wine. Here were moms who were bitching about changing diapers, messy kids, bratty teens, less than helpful husbands, cellulite, kids TV  and everything in between! There were posts about what juice box is the best mixer for vodka and posts about drinking the last of the booze in the house. And the f-bombs! These moms- they were REAL. Their kids were loved and taken care of, but they told the simple truth- kids can be a giant pain in the ass!  And they would never utter those words to their kiddos-  but now they had somewhere to go and say EXACTLY what was on their mind- with no fear of judgment.  I had found my Mecca and I HAD to know more!!

What's this? There is a whole website too? www.momswhodrinkandswear.com. The headline read -Do you indulge in an adult beverage once in awhile after a long hard day of mommin?  Have you dropped the f-bomb in front of the kids? This is website is for you.  It comes equipped with blithering blogging from a mom who gets it. This is a site for real moms with real humor and great love for their families who are not afraid to speak the truth. 

                                                    Relax Mom, welcome home! 

I was immediately hooked on the snarky, sharp tongued wit of the owner and devoured everything on the site. From then on, every day I was checking in to the Facebook page, reading posts, commenting and commiserating with others, posting my own rants and laughing.  I shared the website with my friends and told everyone I knew about this amazing phenomenon called MWDAS!   I started reading "Nikki's Blithering Blog" and have been blown away every time I read it. It has brought me to tears, it has made me laugh till I peed my pants, it has made me do research and learn about things previously unheard of.

I was relating to so many of these funny women and I was getting new friends daily.  I soon  discovered that many of these foul mouth, booze swilling mama's had children with special needs, like me.  I started talking with some of these women outside of Facebook, via email, and soon phone conversations began as well. I am proud to say that I can also call the amazing founder of this group a close friend too.  Nikki is an inspiration- she was my inspiration to begin writing this blog. We have many of the same issues with our kids and I can call and talk to her about anything! (It is a bit disconcerting to hear that tiny little voice drop an f-bomb the first time!)   She is smart, funny, and has a heart as big as the universe.  It is through her brainchild that I have made some dear friends- sight unseen! We have so much in common- and I have to believe there was a higher power guiding her in this venture- because I have honesty met a handful of kindred spirits that I treasure as much as my closest and dearest friends.

Thank you Nikki and thank you Moms Who Drink and Swear- I am not adrift in a sea of pearl clutchers any longer! Cheers!

Where have you been all this time?

So my husband has started blogging about something other than sports. His blog  http://dadvautism.blogspot.com/ is his take on our son and his Autism, and general every day life.His Yin to my Yang if you will.  He is an amazing writer and has published several books (go buy one!)  Until very recently he has been mostly shoulder to cry on and a supportive husband and dad in our journey with Noah and Autism. I am the researcher, I am the activist, I get out there and find answers and network with people and then relay the info to him. 

But in the last couple of weeks he has been voicing a lot of opinions and some very deep insights about our son that leaves me wondering- where has all of this been for the last 5 years? He is the"fixer" in the family. He goes out of his way to make problems go away. He doesn't like to see us sad, or unhappy and so he adopts a let's move forward attitude and that is what he does. Moves forward. Sometimes I move with him- but lots of times- most especially with our boy- I am stuck. Or- if not stuck- moving forward scant inches at a time, only to be yanked backwards a thousand yards. Don't get me wrong, Noah has made amazing progress since first being diagnosed with Autism. A lot of the problems we had just a couple of years ago have all but disappeared, but we are always facing new challenges.

I can't understand from a dad's point of view what it is like to hear your SON is not going to be the son you had thought you would have. Especially with a sports nut  like my husband- his dreams of having his boys play baseball or football are getting crushed. The oldest had absolutely no interest and if it is not an electronically generated past time Noah pretty much doesn't want anything to do with it. But he keeps his positive attitude and sits quietly by letting me do my thing, encouraging me but staying on the fringes.

Then all of a sudden- BAM! He starts writing this blog and I am stunned, even brought to tears by his words. Has he felt this way all along? Is this a new development? Why hasn't he talked about this before with me? All of the times I rambled on and on about this treatment, that school, trying to explain to him why you HAVE to teach Noah this or that way because that is how he learns, why in the hell didn't he pipe up with some of these amazing insights? He sees things in Noah that I don't. His positive spin amazes me, because I am positive but in a very guarded way because I don't want to feel disappointed in our boy's progress and abilities- and I DO NOT  want our boy thinking he is not good enough. Because he is BETTER than good enough. He is sublimely awesome. 

But he has given me a lot to think about, and a lot to look for in Noah. Maybe I shelter him too much, maybe I do too much for him, maybe I am not allowing him to reach potential milestones because I am afraid he will stumble or fall and no mother wants to see that happen to their child, Autistic or not.

So now, with all of my contacts in the Autistic community, all of my research and all of my education, the one person who is the closest to me is finally piping up. We have differing views of course on the future with Noah- like I said I am cautiously optimistic while he is Pollyanna optimistic but working together like this will be the absolute greatest thing in the world for Noah, and that is what matters.

http://www.amazon.com/D-P-Barnsdale/e/B002MA3V7K

I am giving up on giving stuff up. See ya in hell!

Today is Fat Tuesday.  The day where people indulge their glutinous selves in preparation for the Lenten Season where many will give up something-  whether it be an indulgence such as chocolate, pop, sweets, coffee, or alcohol, or something such as being negative or giving up television. In any case it seems to be  in an attempt to be closer to God or redefine their faith. I am no theologian so I will not pretend to understand why giving up your daily cuppa joe equates to Jesus in the desert for 40 days and 40 nights.

I understand that the idea of giving stuff up for Lent is to strengthen spirituality through sacrifice. To put it plainly, you give up something to toughen yourself up. I personally have only given something up for Lent twice- 6 years ago- and both times it was mostly because  everybody else was doing it, and I felt obliged to follow suit. I didn't feel stronger OR more spiritual.  I felt deprived of something I wanted because everyone else said I should be doing it. It wasn't a choice on my part at all.

I have my own faith and my own beliefs and  I believe each person's faith is their own damn business and unless you get up in my face with your religious beliefs then I live and let live.  But when Lent starts- the world is full of the pious that display more self-denial than a hunger strike. Chocolate, cheese, carbs, pop, pizza, and pie…nothing is safe from the swearing-offs of the season. The judgmental and self righteous come out of the woodwork to look down upon us "sinners" shaking their heads in disapproval.

Things I should just give up

This time of year almost every conversation is started with "What did you give up?"   I used to say silly things like "Looking in the mirror" or "Wearing shoes" then I just started to tell people that I gave up on giving stuff up.  I get weird looks, nervous chuckles and some downright hostility when I say this.  Hey- like I said- each to his own- I don't judge YOU because you feel like giving up chocolate is going to make you a better person- if only for a little over a month.  So please- don't judge me because I feel like it is a pointless gesture  that unless applied to your life EVERY SINGLE DAY doesn't make you stronger at all- at least not for the long term. Again, my opinion- I don't expect it to be yours too.

I feel like I make sacrifices on an almost daily basis- I am a mom after all. But I am not expecting some grand reward for what I do. It is just what I do, It's not necessarily hard (well, not all the time) and I might be a better person for it, I would like to think so anyway.

So once again this year  I just plan to keep eating the same shitty foods, and using the same profane language that I always do. I mean- if there were a hell- isn't that what I would be doing when I went there anyway?