by Mary on September 10, 2009
I’ve been thinking lately about the Just People. And the Should People. And especially the Should Just People.
You know them. You may have even been them. I sure was!
“Why don’t you JUST make him do it?”
“You SHOULD go GFCF because it helps all kids with autism.”
“You SHOULD JUST ignore him when he does things like that because he’s only pretending that it bothers him.”
There are the My Child People, the In My Day People, and the All Kids People.
“MY CHILD would never be allowed to act like that.”
“Well, IN MY DAY, parents actually parented instead of this “make sure his needs are met” stuff they do now.”
and my favorite:
“ALL KIDS are (insert some small issue compared to all the other issues) at this age so why do you think it’s any different for you?”
Well, I’ll tell you what…
If you JUST listened to parents or to people with autism, you might understand better. You SHOULD do some research on your own and not believe everything Jenny McCarthy says. You SHOULD JUST ignore people who go on TV and make blanket statements about people with autism. MY CHILD is acting in a way that makes sense to him at this point. IN MY DAY, we parent by making sure his needs are met. ALL KIDS are special in their own ways, no matter what you think.
Maybe if we all remembered all of that, we would in fact realize that people with autism? Are Just People too.
by Tim on August 15, 2009
Normally the worlds of Seth Godin – marketing and business guru – and autism don’t directly intersect. I do think he has incredible insights we could learn from about blogging, building communities, and organizing ourselves into effective advocacy for our children, but that’s for another day.
I wanted to draw attention to his recent post “Willfully ignorant vs. aggressively skeptical”, which I think captures my deep frustrations both with the health care and insurance reform debates here in the U.S. and all the civil wars great and small going on within the ‘autism community’. (Still searching for a better term.)
Here are some money quotes:
The screaming is a key part, because screaming is often a tool used to balance out the lazy ignorance of someone parroting opposition to an idea that they don’t understand.
As people of my generation are known to say, “Word.” There’s not a syllable in there that I could change to make that more true.
It’s easy to fit in by yelling out, and far more difficult to actually read and consider the facts.
I imagine that will sound plenty familiar to those of you who have been witness to or part of all the ‘debates’ going on regarding autism. Shouting down dissent has become a reflex for some.
I have repeatedly heard people yelling at these protests some screamed variation of, “I want my voice to be heard!” My reaction – No, you don’t. You want people to just give you and your views credibility and give you all the benefits of a seat at the table without having to do any of the work.
Allowing someone else to talk would create the possibility – heaven forbid – of dialogue and conversation, both of which require learning enough about your views to argue for them effectively, self-examination, long-term commitment, and, well, stuff that looks and feels like actual work. But I can see that since dialogue could expose someone who hasn’t bothered to do their homework, people in that position would find yelling to be preferable to either that or going ahead and doing the work.
It’s hard for me to think of a more critical issue facing this generation and our children than health care. This quest to find the best possible system of care and access to it – regardless of your views – requires our best efforts and utmost commitment to ensure the health and well-being of our families, communities, states, and country.
I imagine I’m mostly preaching to the converted here and the people I’d like to say all this to wouldn’t likely ever read our blog. But I’ll say it anyway.
Being lazy, parroting the idiocy of others, yelling without ever listening, and not bothering to learn anything disgraces our nation and what we stand for. And most of all, it disgraces our children and the trust they put in us.
Just. Stop. It.
by Tim on August 14, 2009
Someone forwarded me Autism Speaks’s 990 form from 2008. For those of you who don’t know much about U.S. tax law for nonprofits and various reporting requirements (which I don’t really either), nonprofits must file a 990 every year to show things like contribution revenue, program and administrative expenses, etc. It’s quite a bit like corporate tax forms but with data that applies only to nonprofits (e.g., donations). It is a requirement that their 990 be made publicly available by the nonprofit, and most larger ones publish it on their website, though not necessarily prominently.
These things are generally boring as dirt to read. If you know what you’re looking at, it is, however, a good way to see whether a nonprofit is spending their donations wisely and effectively. This can help you decide where to get the biggest bang for your donation buck, especially if you’re deciding between multiple charities.
Usually the juiciest info to read is executive compensation. Nonprofits must list the compensation given to all their officers and ‘key employees’ (basically, the people who make the most money), board members, trustees, etc. You can get a sense of the mindset of a charity based on whether their compensation packages seem reasonable or not. Some border on the profane.
All that brings us to Autism Speaks’s 2008 990 form. My dislike for Autism Speaks is not exactly a state secret. And I don’t feel like diving into that editorial today. I primarily want to draw your attention to some actual data, and you can make your own conclusions.
[Lots of math and disbelief below the fold.]
**********
[click to continue…]
People at work have started asking me (since I went back last week) if E is a “good” baby.
Me: “Actually, he’s already working on getting his second tattoo, and we’re not sure if his teeth are going to come in at all thanks to all that meth he’s cooking up and using.”
I hate and despise the term “good baby.” I know what those people mean: does he sleep; does he cry a lot; does he ever allow Mommy or Daddy to put him down? But that has nothing to do with being “good.” He’s a baby! How can he be BAD?
The reason I hate the term? Because by that meaning, the J-man wasn’t a “good” baby. He didn’t sleep pretty much ever, and he cried if you put him down (thanks undetected silent reflux!). But we still thought he was a WONDERFUL baby. Because he’s ours.
We got some serious assvice on things to do to make the J-man into a “good baby” – just let him cry, eventually he’ll go to sleep! Let him go hungry, eventually he’ll eat. Why would you do physical therapy? Force him to let go of your hand and he’ll walk!
We, uh, didn’t follow any of that assvice. And we still thought the J-man was a wonderful baby, and we think he’s a wonderful boy now.
I know, sometimes it gets to the point where you want to throw something, when you’re out of bed for the 5th time that night, and then the baby barfs on you… but I can’t imagine calling my baby anything but good. Or better. Or best. Or even BESTEST BABY EVER.
And E and J are quite different babies, even though the mini-naps we called Snaps seem to come and go for E (meaning sometimes he sleeps longer), while they were a constant for the J-man. But neither is/was being “bad” for not napping, or for napping. It’s what babies do. We didn’t think the J-man was “bad” for not eating. We didn’t think he was “bad” for not walking on schedule. We got him some help with those things.
I worry that there are people out there who DO think their baby is bad, defective in some way, because they don’t meet the milestones that are only general guidelines anyway. We didn’t think the J-man was defective… we thought he needed help. Those are two VERY different mindsets.
“Bad” people get punished in our society, sometimes by the very people who should love them the most. Babies who don’t meet the “good baby” criteria are judged, and so are their parents… and given a label that shouldn’t ever be applied to babies, and that can lead to that child NOT getting the help they need and deserve.
Every baby, no matter what characteristics that baby has, is a good baby.
April 2nd is World Autism Awareness Day. It was interesting to go back and read my reflection last year about this day, especially since it came just a couple of weeks after we got the J-Man’s diagnosis. Looking back, my awareness of the public landscape of autism for parents was pretty spot on, which honestly depresses me somewhat.
However, what I was barely aware of at the time was the overwhelmingly supportive community of parents, teachers, professionals, and advocates and all the wonderful children we’ve met in our journey since. Admittedly, we live only in our little corner of the spectrum, venturing only on occasion outside of our Pre-Kindergarten world. But we know there’s a whole universe of wonder out there that we haven’t yet explored.
So, ‘awareness’ for me right now comes in working to expand our horizons outside of our five-years-old-and-under world and soaking in all the goodness out there. But first, there’s this whole thing about us having a baby. 
But for this post, I wanted to offer a little commentary based on what I’ve discovered over the past year for people who don’t know a lot about autism yet but want to learn. Here’s what you can do on World Autism Awareness Day, or really any day for that matter.
1. Whenever autism is mentioned on TV, mute the volume or turn it off. Whenever you read the word ‘autism’ in a newspaper, move on and read something else. Ditto for major magazines and online news media. Why? The mainstream media has demonstrated no ability in sorting out the quality information from the BS. Anybody with a loud voice, money, and a crazy idea can get prime media real estate to talk about their autism theory. The media either can’t or won’t referee the quality of the information. Lately, all they seem interested in is fomenting the controversies, which only confuses people – especially scared parents – more. Plus, you really won’t learn anything useful in any of those media outlets anyway.
On a related point – there are a lot of snake oil salespeople out there and a lot of people with their own agendas. Be very wary.
2. Which brings us to where you can learn some things – go read blogs written by parents who are telling their stories about life with their autistic children. I’ll guarantee you what you read will sound very different than 99% of the crap in the media. Where should you start? Why, there are some great blogs listed in the right column of our site! (Note: a few of them aren’t about autism directly – Wrightslaw, Rachel, Speech Therapy Today, and to some degree Special Needs Truth – though they are all important reads in my opinion for what they do.)
3. Go read some blogs written by people with autism. There you will get an even more very different view from the media. I haven’t finished my blogroll of sites written by autistic persons yet, but for starters I’ve learned a lot from reading blogs like Asperger Square 8 and Whose Planet is it Anyway? and from reading sites like Wrong Planet. In about 30 seconds you’ll realize that most people talking in the broader media about autism haven’t even bothered reading sites like these.
4. Decide today – if you do ever say it – that you won’t use the ‘R’ word anymore. I will confess publicly that I have at times in the past used this word, and I admit that to my shame. Time for us all to fix that. By the way, Spread The Word To End The Word ‘r’ Word Awareness Day was the 31st.
5. Expunge from your speech the often-used negative rhetoric about autism, starting with not repeating any of it that you hear. My child isn’t an empty shell or a shadow. He isn’t lost or broken. He is not cursed or stolen from us. He is perfect the way he is, and he is the treasure of all of our days. He has made me a better human being; he is the best teacher I’ve ever had. And he’s not even 4 yet. If anyone thinks my child is defective, I’ll set up a place to meet with them and they can tell that to my face. I suggest they bring money for cab fare to get home and a copy of their insurance card.
Decide to have a more positive view of autism in spite of all the negative messages out there. There are countless wonderful people with talents to share with the world, except that world often ignores them or assumes they have nothing to offer. Everyone deserve the opportunity to live out their potential. Go fight to help make that happen.
And don’t feel sorry for people with autism or for people like us who are proudly their parents. Support, advocate, cheer, and celebrate instead.
Extra Credit – Be aware that our kid is the cutest kid in the world!
Super Extra Credit - Remember, whenever someone says anything bad about autism or people with autism, they’re saying it about this beautiful little child – my beloved son.
by Tim on February 16, 2009
This week marks our one-year anniversary of blogging. And what a long, strange trip it’s been already. Join us as we look back and look forward this week. First, here are a bunch of things we’ve learned along the way so far, though it’s hardly comprehensive!
- There are a lot of good people in this world.
- We’re not the only people in this world who are confused, fearful, crazy, determined, or in need of a lot of support.
- No matter what issue you are facing, others have either been through it or currently are in the same situation.
- There is always somebody who knows how to do something; you just have to ask enough people.
- We are intelligent enough as parents to learn how to do a lot of stuff on our own. So are you.
- Therapists are still worth their weight in gold, and they are severely underpaid.
- Skilled, caring teachers are a divine gift.
- Don’t give a rat’s butt about those who judge you. This isn’t about them.
- Surround yourself with people who support and affirm you and your child. You have permission to use profanity with everyone else if you want to.
- This is a marathon, not a sprint. Pace yourself.
- The beginning is the hardest. I don’t know that it gets simpler, but the more experience you get under your belt, the more competent you’ll feel.
- There are too many negative messages about autism in the media, and these messages make too many parents who just received a diagnosis feel like the world is ending. We need a new message. So much good lives in our children, and autism has so many unique gifts to bring to the world. Why can’t we talk about that for a change?
- When you get a diagnosis, you feel like all your dreams died that day. In a way they did, and you have to go through the process of grieving that or you’ll go crazy. But you get the opportunity to go out and make plenty of new dreams that are greater than you imagined possible.
- There are parents who have gone ahead of us to clear the trail, and we are grateful to them for showing us the way. As you move down your own trail, don’t forget to look back and help those still making their way.
- Decide only what the next step is, and then go do it. If you sit down and try to think through the enormity of everything that you think has to be done, you’ll feel like you are drowning. One foot in front of the other is the only way you’ll get there.
- If you want something, you gotta go fight for it. You don’t get a lot of things given to you freely, and the institutions of the world aren’t often supportive.
- Too many parents are struggling with woefully bad local schools and services, inadequate help, crappy health care or no access to care, lack of availability of informative resources, little or no support, and crushing financial expenses. All of this has to be addressed. We need a better way, but we have to go make our own change.
- There is way too much unhelpful crap about autism on the Internet. What is helpful is hard to find, and often harder to use. We need to build something better.
- There are a lot of amazingly creative people out there coming up with inventive techniques for working with autistic children. I wish I had a few ounces of what they have.
- There are no quick fixes. Sorry. Anyone who offers you a quick solution is selling snake oil, and is most likely just full of it. If it sounds too good or too easy to be true, it usually is.
- Don’t accept everything everybody tells you. A lot of stuff out there is garbage. You have to learn how to think through and analyze what you read and hear, and then you have to determine whether it’s worthwhile or junk. There’s a lot of both out there, and it’s a pain to have to use up valuable energy figuring it out, but you gotta do it.
- I try to keep a positive attitude, but some days just suck. It’s OK that this happens.
- I don’t want anyone to feel sorry for us, because I don’t.
- You can’t do everything; all you can do is the best you can.
- If you feel like you constantly have to be doing something therapy-related with your child, step back for a while and just enjoy them. Never forget this is about building a relationship with your child and enjoying them for who they are.
- I don’t want autism to be an excuse for setting the bar too low for our son. I don’t want to make excuses for him. Plus, every time we’ve wondered whether we’ve set the bar too high, he flies over it.
- Never underestimate what your child might someday do. They are full of surprises.
- Wake up every morning expecting something to happen that will blow your mind. It often works out that way.
- As awful as we felt in the beginning, we’re here, we’re thriving pretty well, and we’re making good progress.
- Your child possesses amazing gifts just waiting to be discovered.
- They know more than you think they do.
- This has been the greatest challenge of our lives, but we are meeting it with an even greater determination. This is the hardest thing I’ve ever done, and I wouldn’t trade it for anything.
- The J-Man shines ever brighter and more wonderfully every day. It’s hard to imagine him being any more wonderful. He has made us better people, and we are thankful for him.
And most importantly for me, the J-Man has shown me my purpose in life. He has taken everything I’ve ever done, learned, been a part of, struggled with, and sought out and showed me what it looks like when it’s brought together and made whole. He has taken the best parts of me and helped me express them, and he has taught me how to take all the old worries, hurts, and burdens, lay them down, and keep walking onward to see what’s next in this adventure. It’s because of who he is that he could teach me all that.
Feel free to share in the comments what you’ve learned from your journey. Thanks for reading!
P.S. A bonus – check out all the things my grandmother taught me over the years that make such a difference for me now.
