Manifesto

We’re working on a ‘manifesto’ so visitors and participants on the site will know the kind of community we’re trying to build here. Consider this a first draft. We’ll add more I’m sure!

Here are some rules:

  • Thou shalt be respectful to every parent here.
  • Thou shalt be thyself at all times. We aren’t super-parents; we’re human. Being honest will help you; holding it in won’t.
  • Thou shalt laugh at thyself. It’ll make you feel better.
  • Thou shalt ask questions. There are stupid questions in this world, but it’s been our experience that parents of kids with these sorts of needs don’t ask them.
  • If thou doth wisheth to offer advice, doeth it constructively or shuteth thy hole.
  • Thou shalt value thy children regardless of what they are going through. Thou may be having a day where thou’d rather send them off with the gypsies, and that’s fine. Thou can do that (feel like sending them off, not actually doing it, though) and still love them.
  • Thou shalt celebrate thy children’s hard-earned achievements, no matter how small. However, if it involves doing the Riverdance, thou might want to closeth thy blinds.
  • Thou shalt not be a horse’s ass.
  • Thou shalt always be an advocate for thy children.
  • Thou shalt never give up.
  • Thou shalt go to Italy, regardless of what that poem says. Thou wilt have to change planes in Holland anyway, trust me.

Here’s what we believe:

  • There’s nothing ‘wrong’ with our child or yours. He or she may be struggling to overcome some or many things, but our children are perfect just as they are.
  • We will do what is necessary to help our child reach his or her full potential, whatever that is.
  • We know more about our child than anyone else. We will not blindly accept the judgments of others, no matter how ‘expert’ they may be.
  • We will, however, listen to any and all advice given to us. We reserve the right to use it, adapt it to our needs, or ignore it and make fun of it.
  • We are perfectly fine with people asking us questions about our son and all the therapies we go to. There is a lot of information to share and learning from each other is how we become better parents. In the rare cases where the questioner is trying to reinforce their belief that all parents with special needs kids are weird or must be doing something wrong, I will instruct my son to go take a whiz on your front door.
  • We will work to be OK with not being perfect. We will work to be OK with not being OK with not being perfect. And so on.
  • People who ignore our experience and understanding of our child, treat us like idiots, and think they know more than we do about him just because they have a long string of initials after their name can go to hell.
  • You have our permission to say “bite me” or be sarcastic to anyone who makes an idiotic comment to you in public. Example: “No, I never thought about talking to my child more. We decided before we had children that we were all going to become mimes.”
  • Never use a big word when profanity will do.
  • Anyone who judges our children, says anything derogatory about them, or makes fun of them will get their ass kicked and their name taken. Once time travel is invented, we will go back in time and smack their parents, too.
  • Parents who can affirm each other with all their flaws and foibles and be supportive and understanding in the midst of all the emotions that come with this are the best people we know. We love you!

To borrow the famous philosophers’ words, “Be excellent to each other. And, party on, dudes!”

{ 8 comments… read them below or add one }

Brenda Weitzberg December 8, 2009 at 10:11 pm

I had also checked out the 990 of Autism Speaks because I am familiar with the form from my paid job as a non profit administrator.

As founder of Aspiritech NFP, I was shocked to learn that they had turned us down for a $25,000 request to fund a half-time autism specialist for our new company that leverages the unique skills of people with AS and HFA to provide them with work in software testing (modeled after Specialisterne.)

Then I participated on 11/13 at a national town hall meeting of AFAA (Advancing Futures for Adults with Autism) where two execs from Autism Speaks spoke.

I introduced myself to them and even sent them a note asking for an opportunity to meet with them this past Friday or Monday when I was in NY as I wanted to “pick their brains” on how to get seed funding for Aspiritech. They didn’t even have the decency to write me back to say that they weren’t able to meet with me!

We are founding Aspiritech in spite of the lack of support from autism organizations like AS. They provide 0 help! Today we were featured in an article on msnbc.com and it kills me that it was posted on the AS website under autism in the news today. As if they had anything to do with us.

Tammy January 1, 2010 at 4:46 pm

I stumbled upon you from another friends page and let me start by saying KUDOS to you both. I love your maifesto and your site. I do have a child with autism (that I know of at this point, but I do have a baby that I feel is probably borderline) howeve, I have five children. Thanks for putting a smile on my face and I am forwarding this to someone whom I know has an autistic child.

Barbara, people suck sometimes and do not realize that there is STRENGTH in numbers. The selfishness and stroking of their personal ego’s usually is what is blocking them to TRULY get outside of themselves and be polite individuals who want more than just EXPOSURE. It is in all the parents and childrens best intrest for your comapny to get some much needed funding. I have am a non-profit founder myself and the is greatest frustration is in the “shoot down” especially because we aren’t doing it for us………… Persistance is key so go get on EVERY BODY’s NERVES!!!!!!!!!

Tammy January 1, 2010 at 4:47 pm

sorry meant *do not*

Kim September 20, 2010 at 5:47 pm

For all the crying I have done (due to relating) while reading this blog……I just about spouted the coke zero from my nose when I read your opinion on the Holland/Italy poem. Hallelujah for parents who are paving the way for the rest of us to help our kiddos be the best they can be no matter what.

We do not have an official diagnosis but like all of us here, know something is up. We have had our two year old in speech therapy and OT for seven months and he will be finally receiving a true (privately funded) interdisciplinary team assessment in November. We are beginning to accept that it is not the diagnosis that we need to concern ourselves with but rather what we are going to do about it. It is still hard and it still hurts and is super scary.

Yesterday as I was mixing my little guys poop in preparation for shipping it to a lab in France, I had to take pause and crack a smile. I have never been to Europe but in a few short days my little sweetie pie’s crap will be traveling internationally. This is all part of our. leave no stone unturned (or no doo-doo down the drain) philosophy. Yes. We know our little guy has some big challenges, but what we are more sure of is that he has some amazing strengths. Our job right now is to assemble a team that can clearly see his strengths and help generalize them to the areas that need some help…..the rest is just crap:)

Thanks for your strength, humor and humanity. Love truly is the only answer.

Tim September 21, 2010 at 11:49 pm

Kim – Thanks for your comment! I think all of us remember what the place you’re in right now feels like. It’s frantic and crazy-making; it’s crying and grief; it’s resolve and determination. It’s a whole lot more than that, too. As time goes on, I find the first things I want to tell parents in the process of getting a diagnosis are changing and evolving. Usually the first thing is, “You can do this. You are strong enough. You will find a way to do what is necessary to help your child grow.” I’ve found lately that the next thing that comes to mind is often, “Don’t panic!” perhaps because I need to keep saying that to myself.

Not all therapies and approaches are created equal. Some are just bunk. The hard part about the early days of a diagnosis is that you just haven’t had time yet to learn how to begin to tell which is which. I guess I say, “Don’t panic” because I think it’s panic that makes us exhaust ourselves, particularly early on, in the pursuit for answers, a path to follow, and instructions on how to get from here to there. For most of us, this is a marathon with more marathons to immediately follow. At first that idea depressed me to no end, but now it’s rather liberating. I don’t have to answer every question today. We can pace ourselves, make good choices, focus our energy on therapies and approaches we know work well for us, pursue others that from experience sound promising, and then punt the rest. In the beginning, it’s really hard to come to terms with that. Everything felt so urgent to us then. It’s a different sort of urgency now I suppose, but I remember feeling perpetually frantic and crazy back then. Now I’m only sorta crazy. :-)

The best advice we ever got was, “Remember, he’s still the same child today as he was yesterday before you came in here and got this diagnosis.” That still won’t solve the fear, anger, and hurt that will come up from a diagnosis regardless of how much you prepare for it, but if you sit with it and work through it over the time it takes to do so, it will pass.

I go back sometimes and look at pictures of our son all over the past 5 years and just sit and remember things about him from those various times and how amazing a person he has been and how much more he gets every day. Love the person your son has been, love the person he is now, and love the person he will grow up to be. You’re right. With that kind of love in your life, you can’t go wrong.

Best of luck! If you’d like to share sometime, let us know how it goes.

Lisa Burns May 13, 2012 at 8:15 am

Hello Tim!!!!
I came upon your blog when I visited the NCPD Website….my son just turned 9 and is making his First Communion today and I am hoping it will go well ( : It was his choice to do this but when he sees a full Church and 1 year of Classes….I hope he is still on board ( : I have so many of the same views as you….here is a project that we started in Iowa City….my Mom was an Artist and I wanted to celebrate her life and promote Autsim Awareness in a positive way….dren than [...]
http://thegazette.com/2012/02/22/awesome-awareness/
Enjoy!!!!

Amanda Boyd October 18, 2012 at 2:55 am

Well hey there!! I have to say you need to apply for sainthood!! It is amazing what you do and what you have done for your son! I am a parent of a 5 almost 6 year old who has ADHD, Adjustment Disorder, and a Mood Disorder. The Adjustment Disorder has ALOT of the same characteristics of Autism and after reading your website, almost front to back, I believe I am NOT alone in some of the struggles I have faced!! Every day is a new battle, a new struggle and Kindergarten it self feels like an uphill climb. At the end of the day today we will celelbrate 18 days STRAIGHT of no pricipal visits!! WOOOHOO!! I must say that in itself is a HUGE thing for us. We celebrate little victories like he just scored his first varsity touch down, even though he is 5!! LOL!! But the smile on my kiddo’s face is worth it! Every second I can see him smile or laugh is worth the tears I shed, the late nights (like tonight) and the moments when I think I wanna run for the hills and never return! God bless you and your family for what you have done for J-Man!!

Robin December 29, 2012 at 9:33 am

I just found your blog through the new Autism Shines page, and I’m grateful to find yet another like-minded soul. And, wow, this blog is so FULL, I am impressed and inspired to dig in and expand my sad little page. This Manifesto included references to my two favorite gripes about our early days on this journey – trips to Holland (how I despise that poem), and therapists telling me I need to talk to my child – so I thought this might be a new favorite page…but then you closed it with a quote from Bill & Ted, and I knew it was a sure thing. Looking forward to hearing more about your most excellent adventures.

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