WELCOME TO BEIRUT

WELCOME TO BEIRUT by Susan F. Rzucidlo

(Beginner's Guide to Autism)

"I am often asked to describe the experience of raising a child with autism-to try and help people who have not shared in that unique experience to understand it, to imagine how it would feel. It's like this.."

There you are, happy in your life, one or two little ones at your feet. Life is complete and good. One of the children is a little different than the other but of course, he's like your in-laws, and you did marry into the family. It can't be all that bad. One day someone comes up from behind you and throws a black bag over your head. They start kicking you in the stomach and trying to tear your heart out. You are terrified, kicking and screaming you struggle to get away but there are too many of them, they overpower you and stuff you into a trunk of a car. Bruised and dazed, you don't know where you are. What's going to happen to you? Will you live through this? This is the day you get the diagnosis. "YOUR CHILD HAS AUTISM"!

There you are in Beirut, dropped in the middle of a war. You don't know the language and you don't know what is going on. Bombs are dropping "Life long diagnosis" and "Neurologically impaired". Bullets whiz by "refrigerator mother" " A good smack is all HE needs to straighten up". Your adrenaline races as the clock ticks away your child's chances for "recovery". You sure as heck didn't sign up for this and want out NOW! God has over estimated your abilities.

Unfortunately, there is no one to send your resignation to. You've done everything right in your life, well you tried, well, you weren't caught too often. Hey! you've never even heard of autism before. You look around and everything looks the same, but different. Your family is the same, your child is the same, but now he has a label and you have a case worker assigned to your family. She'll call you soon. You feel like a lab rat dropped into a maze.

Just as you start to get the first one figured out ( early intervention) they drop you into a larger more complex one (school). Never to be out done, there is always the medical intervention maze. That one is almost never completed.

There is always some new "miracle" drug out there. It helps some kids, will it help yours? You will find some if the greatest folks in the world are doing the same maze you are, maybe on another level but a special-ed maze just the same. Tapping into those folks is a great life line to help you get through the day. This really sucks but hey, there are still good times to be had. WARNING! You do develop and odd sense of humor. Every so often you get hit by a bullet or bomb not enough to kill you, only enough to leave a gaping wound. Your child regresses for no apparent reason, and it feels like a kick in the stomach. Some bully makes fun of your kid and your heart aches. You're excluded from activities and functions because of your child and you cry. Your other children are embarrassed to be around your disabled child and you sigh. You're insurance company refuses to provide therapies for "chronic, life long conditions" and your blood pressure goes up. Your arm aches from holding onto the phone with yet another bureaucrat or doctor or therapist who holds the power to improve or destroy the quality of your child's life with the stroke of a pen. You're exhausted because your child doesn't sleep.

And yet, hope springs eternal.

Yes there is hope. There ARE new medications. There IS research going on. There are interventions that help. Thank God for all those who fought so hard before you came along. Your child will make progress. When he speaks for the first time, maybe not until he is 8 yrs old, your heart will soar. You will know that you have experienced a miracle and you will rejoice. The smallest improvement will look like a huge leap to you. You will marvel at typical development and realize how amazing it is. You will know sorrow like few others and yet you will know joy above joy. You will meet dirty faced angels on playgrounds who are kind to your child without being told to be. There will be a few nurses and doctors who treat your child with respect and who will show you concern and love like few others. Knowing eyes will meet yours in restaurants and malls, they'll understand, they are living through similar times. For those people you will be forever grateful. Don't get me wrong. This is war and its awful. There are no discharges and when you are gone someone else will have to fight in your place.

But, there are lulls in wars, times when the bullets aren't flying and bombs aren't dropping. Flowers are seen and picked. Life long friendships are forged. You share and odd kinship with people from all walks of life. Good times are had, and because we know how bad the bad times are, the good times are even better. Life is good but your life in never normal again, but hey, what fun is normal.

Autism Speaks..the Big Letdown

I am sure if you are reading this blog you have, at a minimum, HEARD of Autism Speaks. What do they do? How did they start? Well to sum it all up- it was founded by Bob and Suzanne Wright-grandparents of a child with Autism. Bob Wright was also the vice-chairman of General Electric. Their daughter, Katie Wright, is the mother of said child and disagrees on MANY levels with what her parents believe and in turn, what Autism Speaks stand for. She is very outspoken on the topic and her beliefs on the vaccine-Autism connection.

You can see Katie Wright's interview with David Kirby (author of Evidence of Harm) here:
Katie Wright interview part 1 and
Katie Wright interview part 2 and
Katie Wright interview part 3
...and what was Autism Speaks' media response to Katie's interview?

"Katie Wright is not a spokesperson for Autism Speaks. She is our daughter and we love her very much. Many of Katie’s personal views differ from ours and do not represent or reflect the ongoing mission of Autism Speaks. Her appearance with David Kirby was done without the knowledge or consent of Autism Speaks."

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. 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 Ohio and in Arizona for 3 years- raising a chunk of money ourselves. We did this to help further research and awareness, 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 of this http://www.theautismtrustusa.org/ , and less of the cutesy blue Autism logos. 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 Autism Speaks  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 grants 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 has us, we 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 Autism Speaks 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.

Nate's therapy center is Lauren's Institute for Education.

http://laurensinstitute.org/

The money donated to this center will directly help fund Nate's therapy and the supplies they need.

I will continue to put on my blue shirt and walk alongside Nate's teachers and classmates to raise Autism Awareness..but MY money, and all fundraising I do, will be put to use locally..where Nateman and kids in my area can benefit directly from the generosity and love of our family and friends.

Come out and play with me

After a cold rainy day here in Arizona yesterday, we were thrilled to be able to hit the park!! Surprisingly we were the only ones there. It was a great morning activity after bagels and coffee with Grandma Ding. I have a feeling we will walk to another park today after lunch as well-take advantage of the cooler SUNNY day. It's not gonna last, that's for sure. :)

If the crown fits....

With Nateman safe and happy at school, Aaron, Grandma Ding, and I headed downtown to take Neve to Disney Princess Classics on Ice. So much fun and I have never seen such a sea of mini princesses in all my time. Lordy. Neve was super excited for it all and after Grandma bought her the oh-so-needed 22 dollar Tinkerbell spinning toy- we were in our seats. Super cute show. All the seats were great and you felt up close to it all.

On our way down the skywalk escalator and then just inside the entrance...

Neve and my mom. Neve calls Grandma her "BFF". ha!

Aaron and his little princess.

Here are some pics from the show too.

Isn't that sepcial...

I guess I feel "sepcial" lately as I can't seem to get everything in order. My head is still spinning trying to coordinate summer schedules, but I think it finally might be coming together.

Neve will be doing gymnastics camp, summer school camp, and she will switch to swim lessons when soccer ends. Nate will be at summer school, speech therapy, ABA therapy, music therapy, and hopefully we will get some news on when our permanent occupational therapist is in place so we can add that in too. We decided not to sign Nate up for adaptive swimming lessons this year which we have done in the past. It's always a joke because everyone (supposedly trained and experienced, mind you) is unsure of how to help and hold Nate, so Aaron ends up doing the holding and therefore the teaching too. We don't need to pay for that. Nate and Aaron are allowed in the other side of the pool from Neve during her swim lessons so we shall call that his scheduled swim time. :)

I have no clue how I am physically going to be in 12 places at once this summer but we will find a way to make it work. Thank GOD Aaron works from home or it just all couldn't be done. I know his job isn't the highest paying job in his field that he could have..but the flexibility is priceless.

Love Me For Who I Am

Brady Rymer and The Little Band that Could are dropping their new album.
http://www.bradyrymer.com/
 I love it. I really love it. Brady Rymer is one of those artists I actually WANT to listen to with my kids instead of most kids music which makes ME want to rock and flap. :) Laurie Berkner, Justin Roberts and Brady Rymer are favs in my house--if you haven't heard of him- have a listen! ..and check out his new CD. My fav is "Bein with You"- which is down the left hand side of my blog and might be autoplaying- so turn it off before you watch the video. :) I swear I wrote that song for Nateman.
Enjoy!

Puppies and Rainbows

I started to reply on my FB to the post about the other blog I linked, but then I thought it would be best on here as I (as always) have more to say than the max words allowed...

Yes, she is bitter. Damn skippy.And she has every right to be. Please realize that Michelle is probably not who you think she is. This was ONE post on a blog she has kept for years. I reached out to Michelle a year or so ago (we share a biomed doc) as I connect with her on a few levels. Over the past year or so (with the whole cross-country move thing) I forgot about her blog and stopped reading (like I do with so many blogs I enjoy, unfortunately). Another biomed feed I am on passed on her post about Autism Awareness and that's what linked me back with Michelle. Michelle is an incredible woman who values her faith and her family above all else. This wasn't a fluff piece she wrote for her community paper for Autism Awareness month--this is HER BLOG. Her real feelings and real opinions and how she was feeling at the moment she wrote it. I applaud her. I am assuming, for her, like it is for me, it is incredibly therapeutic to write down how you REALLY feel. I am aware that makes others uncomfortable. I am aware that it makes others feel awkward towards you. But let me ask you this...how can we say over and over how unaware and ignorant people are, and expect for that to change if we don't SHARE what it's really like?

So yes, she is bitter. Sometimes. Sometimes she encouraging and thankful. Sometimes she is loving and grateful. Sometimes she is at her wits end.  I GET IT. She is a real mom of a disabled child. It's not all puppies and rainbows. For starters my son is allergic to dogs and the rainbow is too bright for my light sensitive child's eyes. ;)

I think that goes for all moms though. Life is WAY more Roseanne than it is Claire Huxtable. Kids are funny. Life isn't perfect...and some of us choose to laugh about the same things that make us cry. I have always gravitated towards the REAL moms- you know, the ones that actually admit they didn't have time to take a shower today because Jimmy pooped his pants then proceeded to scoot across your new carpet...the moms that roll their eyes at the other moms that have picture perfect hair and are wearing their knee high boots to pick their kids up at school. THOSE are my peeps. The ones that stay at school and spend time volunteering in "perfect mom's" kid's classroom while "perfect mom" is off at the gym.
I love when my closest friends tell me about their imperfect lives. It makes us BOTH feel better. It's cheaper than therapy. My whole life is imperfect so I hold my friends, you know-the REAL ones, super close.  ..and while I know some choose to not make their life public on blogs or FB or whatever- they choose to have others perceive them in the perfect way that they showcase...but I don't ever want to be that person. I will continue to be me-and maybe a small note from my brother reminded me of that-and write about what I feel if I so choose. The highs and the lows. If you can't handle the lows, then check back tomorrow..I have a feeling the storm may have passed and you will catch a pic of my beautiful kiddos.