I saw this quote on The Joy of Autism today. It’s from Audre Lorde.

“When I dare to be powerful - to use my strength in the service of my vision, then it becomes less and less important whether I am afraid.”

I doubt she had parents of autistic children in mind at the time, but if she had the strength of conviction and determination to say these words given everything she faced, I have no excuses to make for myself.

When you’re the parent of an autistic child and your strength, determination, and conviction about doing however much work it takes to help your child realize their full potential starts taking over inside of you, you realize that this precious child in front of you is your vision.

Before her death, Audre Lorde took the name Gambda Adisa, meaning Warrior: She Who Makes Her Meaning Known.

If that doesn’t give you goosebumps when you think about your child, go back and read it again until it does.

The Holland Tourism Board would like a word with you…

If you’ve ‘gone public’ with having a special needs child for about this side of 37 minutes, odds are stellar that someone has sent you the “Welcome to Holland” poem by Emily Perl Kingsley. For the uninitiated, click that link and go read it. I’ll wait.

While it’s not as controversial a topic among parents as say vaccines, you’ll still get a wide range of reactions and emotions about it, and those may change drastically depending on the mood they’re in at any given moment.

Regardless of what I say next, most people who have sent it to us have done so out of concern and love for us. To them I say, I appreciate you more than you know, and I hope you’ll understand that the emotions of parents of autistic children are complex, varied, and wild. And we get more honest about that as time goes on.

At first I hated that poem. Then I felt like I got it. Then I felt like the poet was a bad parent and I cursed her name to the darkness (I was bitter then - duh). Then I kinda got it again. Now I have a completely different reaction to it:

What the hell did Holland do to deserve this?

I’ve never been to Holland or Italy, and beyond one having the Pope’s house in the middle of it and the other having a higher population of blond women, I don’t know what the primary pros and cons are. I have no clue why the plane full of all the special needs kids and families got rerouted to Holland, except perhaps the flight attendants thought the screaming indicated a potential terrorist threat.

Luckily, I’m not alone in this wondering. A funny reply came in the form of “Holland Schmolland” by Laura Krueger Crawford. Apparently a cottage industry of these things is popping up.

Then I found “Welcome to Beirut,” by Susan F. Rzucidlo, which is utterly brilliant. It’s got me wanting to write my own.

In the end, I only have one reaction to the Holland poem, and I think this one is here to stay. Neither Italy nor Holland nor all the countries in the world combined can hold a candle to our son.

Our house can range from idyllic to insane, but I wouldn’t trade it for anything. Not even all the artwork in Italy together could impress me more than what my son struggles to create with crayons and computer paper. The art on our walls at home is the symbol of all the hard work he’s put into overcoming his challenges. He is our masterpiece.

Rzucidlo lasers in on one of the biggest truths I’ve learned so far when she says, “You will know sorrow like few others and yet you will know joy above joy.” We celebrate every little step, no matter how small. We give thanks to all those parents who’ve gone ahead of us and given us roads to follow. We feel affirmed by those parents who see us go to tears when he says a new word and know why. We rejoice for the gifts given to us by skilled, committed, kind-hearted therapists who work for pay far less than the weight-in-gold salaries they deserve.

We have very high highs and really low lows, but between that vast expanse, we see all the little details of the world. I sit and stare at the sky because he does. I discover microscopic pieces of dirt in the carpet just because he does. I wonder what all I would miss if he didn’t show them to me.

One more thing I’ve learned - There are a lot of good and kind people in this world, and we’ve only just begun to meet them. We wish our son didn’t have to struggle like he does, but he is accepting it with bravery and grace and determination. We can do no less.

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!”