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.

While I’m trying not to act like the above title (10 points if you know where it’s from. 20 if you sing it!), it’s a little glum around the ol’ Flashlight house these days. We’re still trying to work our way through the stages of grief everyone talks about – and I’m stuck in the anger/despair part.

Really, why does this have to be so hard? I, like all parents, want my child to have an easier life than I have had. I want him to have the good things from my life: to grow up loving to learn, go to college because it’s just what we do, find a wonderful partner like I have, and have beautiful children that I can spoil someday. It reminds me of that line from Steel Magnolias where Julia Roberts’s character says, “I want to sit on the front porch, covered in grandchildren, and say ‘No,’ and ‘Stop that.’” I want him to skip the bad things…

Instead, his life will be immeasurably harder than mine. He will have to work harder at EVERYTHING than I had to. Everything (ok, except peeing while standing up, which I still can’t do unless in the shower… it’s OK, I’m the one who cleans the bathroom).

This changes our lives for the long term. It changes our plans for ourselves (second baby? Moving to the mountains someday?) and our plans for him (doctor? Lawyer? POTUS!?).

Interestingly enough, it doesn’t change our lives for the short term. J-man will still have the same therapies he had before, since he was already in developmental, occupational, and speech therapies. He will still attend the special preschool. He will still pull us to the back door to go out and swing every day. He will still continue to delight us with his smiles and giggles and sense of mischief. He will still be the wonderful boy we know. He will not know the difference that 3 letters can make.

We will though.

In its own way, it seems fitting that today is Good Friday. There are symbols and themes that go along with this day that speak to how I feel about everything going on with us.

People either skip over Good Friday on the way to Easter or don’t bother to contemplate what that Friday was really like before anyone ever knew there would be an Easter.

It’s not about what will happen but what has happened and what that feels like right now.

Good Friday is about believing that things have turned out in the worst way you could imagine. It’s about once having all of this hope and then feeling like everything fell apart. It’s about being told it would happen and not believing it until you saw it with your own eyes. It’s about people’s entire view of the world and their role in it one day abruptly ending, left instead to wander aimlessly and reinvent your life. It’s about believing you were promised one thing and then having it taken from you. It’s about feeling you’re going to be shunned from this day on by society. It’s about believing from now on, you’re on your own.

It’s about the story not ending like it’s supposed to.

I think most of theology can be summed up in one word - ‘but’. I’m a writer, so I tend to see things through the lens of language. Today, I see God as the Great Conjunction.

I once believed our lives would follow a certain path, but instead a different one lies before us.

On that first Good Friday, everything fell apart, but the sun came up that Saturday, and then that Sunday, and then that Monday, and every day since.

One of the most powerful forms of speech in the Bible (depending on the version you read) goes like this: “You have heard it said that… but I say unto you…” Things will be transformed, but we’re not there yet. I’m still carrying around a lot of anger.

Good Friday is about being in the moment before the ‘but’, long before there is any hope that it will come. I may be stuck on Friday for a while.

I completely broke down Wednesday when I was giving J-Man a hug and said “I-IIIIIII… Looooooooooove” and then he gave me a kiss. I barely got the “you” out before I choked on tears.

I believe J-Man will be a living example of how to put things back together again. As frustrated as he gets, I know his stubborn, determined streak. If there is a way, he will find it. Right now I’m having a hard time believing in much, but I know I believe in him. And for now, that is enough.

If he could talk, I could see him saying, “You may say that there will be things I can’t do, but I’ll have something else to say about that.”

I had a rough night last night. It was one of those cumulative sort of episodes where you stockpile stress and worry and get to the point where you have to empty some of what’s in that bucket to get to the next day. I’m sure that means I need to focus on better ways to deal with that.

Part of this is not paying enough attention to all the positives that happen every day. So before our big appointment today, let me tell you one.

Yesterday, he ate a mouthful of a peanut butter and jelly sandwich.

This may sound utterly trivial to a lot of parents, but this is the equivalent of me orbiting the earth without a spaceship. There are a number of textures in a PB&J that normally make him gag (the literal, retching kind). He didn’t look terribly excited by what he ate, but he chewed it and swallowed it - no taking it out of his mouth and handing it back to us in a panic.

He earns every triumph, and every one is cause for celebration. I needed to be reminded of that yesterday.

Because I am a nerd and go in and read Tim’s posts, I went and read Amalah’s blog too, and found this piece that resonated with me.

This was the part that REALLY says what I am thinking.

You know why I’m afraid of autism? Of delays and labels and illness and stuff that just ain’t right with my kid?

Because I am afraid of myself. Of what I am capable of, of what I can handle, and that it won’t be enough. There.

Well, that, and the whole “I wish everything wasn’t so hard for him” thing.

He tries so hard to communicate without words. Now, when we say, “I love you” before bedtime and try to get J-man to say any part of it back, he kisses us instead. And kisses us. And kisses us.

I love you too, Little Man.

I read. I read a lot. I mean… a lot. I can’t stop myself from reading if there are words in front of me. I read for work, I read for pleasure, and I especially read because a book is about someone else’s troubles and not mine.

Lately (and by lately I mean the past few years) I’ve really worked on reading books with a strong female protagonist. Usually that means I’m reading either mysteries or fantasy/science fiction. I try my best not to read scary stuff, since I get nightmares from that. I also own a lot of children’s fiction, especially historical fiction. I have learned a lot about living in the 1850s through early 1900s. This is part of the reason that I am the Mary-pedia.

I learn from reading (verbal), and I learn from listening (aural). As an education major in college, I found that most children learn best from those two methods… but that there is a sub-set of kids who learn through body movement (kinesthetics), or music, or from visual stimulation like art.

I wonder… how will Mister Man learn the best? Will his sensory issues stop him from wanting to learn through movement, or will that be the best way for him to learn? Will he be unable to “get” art class because he spends the whole time concerned about getting messy? He loves music… is that the best way to help him remember? (I remember learning specific literature quotations while listening to music, and being able to remember them by just thinking of the song’s melody. Of course, that didn’t amuse the people who sat near me during an exam, because I would unconsciously hum!)

What do you do to escape from life for just a little while? Tim turns on the iPod and tunes out the world. He watches science programs on TV (best when they’re narrated by William Shatner). He used to just stand in the shower, but since we’re in the midst of the worst drought in recorded history… he doesn’t do that anymore! He goes on solitary walks.

Me? I read.

One of the things I’ve noticed about being a mom of a special needs kid is that people think you did something to cause your kid to be that way – or that you DIDN’T do something, and that caused your kid to be that way. Either way, it’s the mom’s fault. I do my best not to listen to those types of people, because most research shows that special needs aren’t caused by something the parent has done… but occasionally, it still gets to me.

So I ask myself: is it because I work outside the home? Does he not speak because we had to have his tongue clipped at two-weeks old? Is it because I’m not a very talkative person at home myself? Did I do something wrong during pregnancy? Could I have prevented this from happening if I were a better mom?

And so it goes. There is always that negative little voice in the back of my mind saying those things. Tim says he gets the same little voice, but I truly don’t think he gets the societal pressure I feel when we’re out and about.

If you met my son, you would soon want to hug him and squeeze him and call him George. If he liked you, he might even let you do all that, although the George thing might confuse him. He is the most loving child I’ve ever seen (and we have extra-cute nieces and nephews, so we have seen them in action as well). He tries very hard to get us to understand what he can’t say, and is quite inventive in figuring out how to communicate without words or signs. He’s beautiful and funny and caring and impish and mischievous and brilliant and loving.

I just wish everything wasn’t so hard for him.

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!”

To put it simply, this is primarily a blog for parents - particularly of ’special needs’ kids - who feel either stupid, occasionally or perpetually inept at parenting, or, most likely, both. This doesn’t mean you really are stupid or inept, but if you’ve ever been so mental that you’ve made it to the mailbox in your underwear before realizing it, you definitely will start to question everything. If you didn’t realize your ‘garment deficiency’ until your neighbor asked you about it the next day, you’ll really feel at home here.

We’re the proud parents of our 2 1/2-year-old son, who is the bright star at the center of our universe. He has an exuberance that can brighten any room. He also has a great many struggles, but he faces them bravely and with a determination that inspires us. He goes to various therapies during the week, all of which we’ll cover in future entries.

Some of his issues have a fairly clear diagnosis; others do not. The most obvious one is Sensory Integration Disorder. You’ll also see this referred to as Sensory Processing Disorder, Sensory Integration Dysfunction, and a few other things. The idea is essentially the same.

There is a growing sense that he also has apraxia of speech. He uses very few words and the challenge has been to understand why. He also has some issues with coordinating fine motor movements, which is most likely related to his sensory problems. As a result, he can’t really sign either.

He’s also very delayed in his eating skills. He was in feeding therapy for a long time and still is to a lesser degree. He only eats a few foods. It became clear that he’s not ‘picky’ but instead has sensory reactions to many types of food. It’s complicated, but we’ll get more into it later.

The good news is that he seems to understand us quite well and follows instructions as well as most two-year-olds. He’s a social kid and gets along well with most anyone. Thankfully, he has very few tantrums, and when he does they are very short.

The complicating problem is that he also has some other indeterminate developmental delays. Autism has been bandied about, but none of his therapists currently think that’s likely because of his social skills and general ability to tolerate situations and activities that kids with Asperger’s or autism usually cannot.

So, we’re on a quest to help our son decipher the world and grow into his full potential. We know other parents are going through this too, often without support or understanding of what to do. Our hope is to connect with parents who are struggling to understand what is going on and share whatever insights we have with each other.

I guess you could say that this is our way of talking through things in hopes of discovering the answers to our countless parenting questions. If we can find common insight and community with other parents and help each other figure things out, then we’ll have accomplished something here.

You don’t need to have a child working through anything we’ve mentioned above. If your child is having a hard time and you feel clueless or frustrated, you’re in the right place. We know that a lot of parents of special needs kids feel isolated, stupid, and frustrated. Be welcome here! You’re in good company.

This will be a tag team blog. My wife will share her wise and sage-like thoughts, and I’ll do whatever it is I do. We’ll try to keep it light-hearted and fun, but we aren’t bouncy, chipper types so who knows what else will come out of our fingers.

So, here we go!

Oh - in case you’re wondering, it comes from the saying, “He can’t find his own ass with both hands and a flashlight.”