Today I went to the doctor because I’m still tired, and not really able to concentrate, and have no stamina, and have NO initiative to either start anything or finish whatever I feebly started.

She told me to eat right, exercise, get more sleep, and take time for myself. I wanted to cry right there in the office. I asked if there couldn’t be a drug for me - she said that drugs were a short-term solution, and that I needed to look at the long-term and take better care of myself physically, or I simply wasn’t going to get better. I told her what my day consists of, and how there isn’t time for me to do all those things. She said I would have to make time. Uh huh. She suggested I hire someone to do the stuff that takes up my time, because “since you don’t do anything except work, you must have all this money sitting around.” No really, she said that.

So J-man, instead of working with you in the evenings, and instead of cooking, or doing laundry, or whatever, I’m just going to take that time for myself. Instead of paying for (I don’t know) our mortgage, and car payment, and Tim’s student loans, and therapy bills, and utilities, and groceries, I’m just going to hire someone to be my personal servant.

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.

Dear Son,

How is it possible that you are our child? Just because you look JUST like me, except you have Daddy’s build (and bits), I still think maybe something happened at the hospital (even though one of us was with you the entire time, plus you had the baby lo-jack) and they gave us the wrong baby.

Why would I think that? You don’t nap. Mama and Daddy would kill for a nap most days, while you are quite willing to go weeks without napping. At this point I believe it’s been over 2 weeks since you napped. You just play in your crib, singing along to yourself and, as previously noted, chewing on whatever you can find. If Mama weren’t working, she would absolutely be able to nap while you were playing safely in your crib, but Daddy can’t. (Let’s face it, Mama is a champion at sleeping.)

Noggin is running a theme that talks about how much better the adult world would be if it ran like preschool. There would be naptime!

Anyway, please sleep so you aren’t cranky by 6:00 pm.

Love,
Mama

This pretty much sums it up.

“I’d piss on a spark plug if I thought it’d do any good!” - General Beringer from the movie War Games.

J-Man’s autism evaluation is tomorrow morning. My brain still hurts from the preliminary conversation we had today with the county about his transition from Early Intervention to preschool in six months. I don’t even know where to start with the fire hose of information that entails.

In any case, time to switch gears to our big day tomorrow. What we’re hoping for tomorrow is an evaluation that accurately describes where he is in his life right now so he can get whatever he needs to be the best Little Man he can be. We have confidence in the evaluator; our hope is just that he feels comfortable enough to be himself during the evaluation. He really struggled with the Early Intervention evaluations, but those were some time back and with evaluators we had less confidence in. Hopefully this one will be easier for him.

He gets frustrated with himself pretty easily now, though, and watching your child struggle through that is one of the hardest emotions a parent can bear. If you’re going through this, you already know what I mean. And you also know how much you or I would do if we could just carry some our children’s struggles for them, even for a little while.

I’ve said this to our various evaluators and teams before, and I think it’s worth repeating here. When we get the results of an evaluation, we don’t want to think we know; we want to know we know. I know that’s a lot to ask at this point, but it’s the standard I’ve set for us to work toward.

I know the reality is that there’s a lot of educated guessing at this stage. It’s the professionals who admit that and make their best call from that who I respect. It’s the ones that swoop in for an hour and pronounce judgments who I don’t. We have plenty of reason to believe that tomorrow we’ll be getting the best possible evaluation we can get at this time.

In three weeks, we’ll get the results of tomorrow’s session. That’ll be a long wait. It’ll still be a relief to get to noon tomorrow and have this behind us. We’ll cross that next bridge when we get there.

Just so you know, if the vomit has big enough chunks of chicken nuggets, you should consider removing those chunks from the clothing/towels BEFORE you launder them. Otherwise you may end up picking freshly washed and rinsed chunks of chicken nugget vomit out of your washer, then feeling the need to bleach both the machine and your hands.

Also, it is a good idea to remember that you actually laundered those clothes/towels on Monday, and not leave them in the washing machine until Thursday. Otherwise you may end up picking not-freshly washed and rinsed chunks of chicken nugget vomit out of your washer, then feeling the need to bleach both the machine and your hands, and then having to re-launder those clothes anyway.

And, seriously son? Jeopardy, while the best game show ever invented (including Match Game, where they were always drunk or high), is just not on every minute of every day, and when you pick up the remote control and hand it to me, sometimes I can’t find it for you. We already DVR Signing Time and The Wonder Pets for you, and every “when nature revolts” show for Daddy. Can I please keep my 2 movies that I still haven’t had time to watch on the DVR, and not have them deleted for lack of space? Kthxbye.

His word just before bed tonight - “love”.

He’s been trying so hard to say it. He decided that kissing us was going to be his ’sign’ for it in the meantime, but you could watch his mouth try to make the word. I don’t care how it comes out (”luh” with a slight ‘v’ sound on the end, in this case); he said it.

If you’re going through speech issues with your child, you know what one word can do to you. Some words - especially one word - go beyond what any of our own words can express.

Sleep well. I will.

Happy Spring Forward, the time of year when parents briefly might get to sleep some fraction of an hour later, if:

1. Your kid actually sleeps through the night.
2. You don’t have to be somewhere - like school - early in the morning.
3. Your kid isn’t a rooster who crows at first light regardless of the time of year.

This will last three days if you’re lucky. Enjoy it while you can.

No, I’m not talking about Tim.

J-man seems to be getting some sort of illness. Please let it NOT be the flu. I want him to be as well as possible for Tuesday’s evaluation. Of course, I should be used to this by now – every evaluation he’s ever had was prefaced by some sort of viral attack!

Coughing and whining. Whining and coughing. I’m not hungry. I’m starving! I need to sleep. I don’t ever want to see the inside of my crib again. Hold me and don’t put me down even when you desperately need to pee. I want to sit in my highchair all evening and will cry if you take me out.

Like sands through the hourglass, these are the days of our lives.

I went to Whole Paycheck today to stock up on J-man food. I bought 6 bags of Veggie Sticks. Yep, six bags. If WP were a 30 minutes minimum drive from your house, you would play the stock-up-game too. I also bought 459082371526 jars of organic baby food, but not the 2 soups that I was looking for, because they were out. Son, I would like for you to eat real food sometime soon. Like last Thursday.

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.

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.”