With some regularity, conversations come up about what ‘autistic stuff’ J-Man does and doesn’t do. I know some of these are stereotypical traits, but many of these come out of evaluations and the various ways we’ve tried to figure out his diagnosis.

So for the benefit of our readers who are wondering whether their kid is similar to ours, here’s a description of him and what he does, kinda does, or doesn’t really do. We’ve been recompiling this for his upcoming (re-)evaluations and preschool/IEP stuff, so we thought we’d share.

Obvious disclaimer: This isn’t a substitute for having your child evaluated. You are parents and you know your child better than anyone. If you suspect there might be a problem, trust your intuition. We are not advising you on how to evaluate your child. Go get them evaluated. Don’t just rely on some random people on the Internet. You’re smarter than that.

Reminder - he’s a bit over 2 1/2 years old. A doctor (psychologist with a bazillion years of experience at evaluating kids) diagnosed him with an autism spectrum disorder. He said that at J-Man’s current age, labeling him with “mild”, “moderate”, or whatever wasn’t terribly useful and likely to be inaccurate. He’s also been diagnosed with sensory processing (or sensory integration, depending on who you talk to) issues, apraxia, and motor planning issues, among other delays.

Significant issues he has:

• Severe speech delay - Obviously, yes. We figure he’s going on 18 months behind. The belief is that he has apraxia, which isn’t at all unusual in autistic kids.
• Communication problems - Struggles to communicate in other ways, too; sign language, etc. isn’t in his repertoire. Unless he can pick it up and bring it to you, he has a very hard time asking for things. He also will use your hands to do stuff rather than his own, which is something we discovered is a characteristic of autism.
• Rarely points at what he wants - That’s pretty self-explanatory. He tends to use much more broad movements, which are very difficult to figure out.
• Hand/arm flapping - Flaps his arms when he gets excited or overstimulated. Primarily he does this in the car (the moving scenery apparently is too much for him to take in) and in places like the store (especially ones like Target that are bright, busy, and red). It’ll also happen if he’s watching some TV show that gets him excited. Interestingly enough, he usually looks happy while he does it. The suspicion is that this is a lot of ’sensory overflow’ and doing this helps him order and calm his system.
• Learning problems - We don’t know cognitively where he is because he’s hard to engage in those sorts of activities, but he definitely does way better at puzzles and things like that when he’s calmer. We suspect he knows a lot more than he’s shown.
• Eye contact - Pretty poor, but it seems to be getting better lately. We can get a few seconds of it with people he knows well, not so much with strangers. He definitely is better with this when he feels pretty balanced sensory-wise.
• Sensory problems - Oh yeah; feeding, vestibular, proprioceptive are the biggies. We’ve known he’s had sensory integration issues since forever, and they still affect him a lot. The last couple of days he’s taken up sucking his shirt to soaking again. Yuck! He still loves exaggerated movement (throw over your head, swinging outside, bouncing on the exercise ball) and seeks out deep pressure (big hugs, firm back pressure). He also sleeps wedged in the corner of his bed and was a total swaddle baby. He finds sticky or slimy stuff on his hands really icky (finger paint = yuck). He dislikes most food textures, and will gag at ones he really hates. He’ll sometimes gag when he’s sensory overloaded regardless of what negative sense it is.
• Seriously picky eater - Eats just about nothing except toast, chicken nuggets, crunchy stuff like chips, and purees. He also has some reflux, but that’s minor at this point so I doubt it affects much here. No other GI issues have been indicated.
• Lack of imaginary play - He doesn’t really engage any of his toys in this way; he can be playful with others but I wouldn’t really call it imaginary, nor would I call his play with his peers consistent or much like what you’d expect for his age. His level of play is very cause-and-effect, meaning he presses some button and the toy does something back at him. It’s a much more literal way of interacting, which is another common autistic trait.
• Social awareness - He usually doesn’t acknowledge other kids in the room, but he’s pretty good with adult women (he’s pretty flirty). At preschool, he’s typically off doing his own thing.
• Joint attention - The fancy term for wanting to share with you something he finds very interesting. Example: Child sees a car, picks it up, shows it to you, and then looks at the car and then at you to make sure you are seeing it with him. J-Man does this very rarely, which is another characteristic of autism.
• Responsivity to order in learning - This isn’t so much an issue as it is a common strategy for autistic kids, but he responds very well to doing his ‘learning work’ in an orderly environment, at his little desk, doing specific tasks, without a lot of distractions. Imposing structure has dramatically helped out with his learning and growth.
• Travel - One or more nights away sucks; in the car is normally fine; he just won’t sleep well at all anywhere else but home - two nights away is pretty much our limit before everyone is sleep-deprived and mental.
• Fine motor issues - He has a very hard time manipulating certain objects; e.g., hard to feed himself with a spoon without a lot of help, though he has made great strides in the last week.
• Motor planning - He has a hard time figuring out how to accomplish many tasks, and only occasionally will successfully do something you ask him to do. If it requires a sequence of more than a couple of steps, he pretty much can’t do it yet. “If you’re happy and you know it stomp your feet, clap your hands, and shout Hooray!” is incredibly frustrating for him. You can see him trying to work out how to do it, but his body won’t comply. Yes, it really pulls at my heart to watch him struggle like that. We’ve wondered whether this has made sign language nearly impossible for him; we’ve been trying for over two years. That said, he has made great strides (literally) in the last week or so in going up and down steps by holding on to a railing or your hand. This is a major leap forward for him.
• Responding to his name - This is sort of borderline to me, but he doesn’t do this that well; it’s not so bad we can’t work with it, though.
• Walks on his toes - Yep, but usually only in short intervals.
• Poor muscle tone in his trunk/core muscles - In his arms and legs, he is as strong as an ox on steroids, speed, and Starbucks, but he ain’t going to be on 8-Minute Abs any time soon. Related stat: I weigh 225 and he has knocked me flat on my butt from standing.
• “Flight Risk” - If you put him down, he’s usually going to take off running. We’d never be able to set him down in a store or a mall. If we did, he’d be off to the races. This happens outside too. It’s exhausting to say the least.

Issues that aren’t too bad:

• Fixation or attachment to a particular object - He was pretty attached to Glo-worm and his Leap Frog caterpillar early on, and now he’s pretty fixated on his piano keyboard and other things that make music, along with some of his books. He can get pretty zoned out on them, but not so bad that you can’t break him away from it with some effort or that he doesn’t get up eventually and go do something else. We do have to sometimes hide whatever it is so we can keep him focused on us enough to do his therapy work when the zoning out gets to be a problem.
• Emotional awareness - He’s pretty good with understanding people’s emotions, especially when people are laughing or are sad.
• Sensitivity to routine - We do keep a routine, but mostly out of habit from back in the days he wouldn’t sleep and because it helps him learn better; we can vary it without any real issues as long as we’re not out of town and as long as we give him some downtime in the afternoon.
• Needing physical order - It’s very important to him to have all the doors closed wherever he is. This is annoying sometimes, but not a big deal in the grand scheme of things. I’ve noticed that there are a couple of toys he wants in the ‘right place’, but why these few and not all the others is a mystery to me.
• Sleep issues - Rarely naps anymore but does sleep through the night (12 hours on average); this is SUCH an improvement over the first 18 months when he never slept through and often got up every 2-3 hours.
• Gross motor - He was a very late walker (almost 23 months) so this used to be a real problem, but he’s pretty self-reliant with this now even if he’s still a bit behind. He definitely has his own style, but he rarely falls. Going up and down steps upright (though still with a lot of help) is a recent highlight. There are a lot of steep stairs around, and heights freak him out, so this is a real challenge.

Issues we haven’t really seen:

• Regression - His development has been very slow on various fronts, but he still has steadily improved. We have setback weeks from time to time, but our overall trajectory is toward improvement. He didn’t have a bunch of words and skills and then lose them like some.
• Self-destructive behavior / self-injury - He’s smacked himself in the head a few times, but nothing at all that we’ve worried about. I can’t even remember the last time he did this.
• Uncontrollable tantrums - Never; he does a great job dissipating his frustrations and rarely pitches a fit for more than a couple of minutes. He does some pitiful drama and then we move on.
• Repetitive behaviors - Very little except for the hand/arm flapping.
• Lining stuff up/compulsive organizing - Pretty much never. Our house is often a wreck and he doesn’t seem to care. Like I said before, he has a couple of things that seem to have a ‘right place’, but it’s so minor that it barely registers as anything more than a quirk to us.
• Fixation on orderliness - Doesn’t seem to care if we move stuff around.
• Detachment - He’s very attached to us, loves being with us, and often wants to be held. If you’re familiar to him, he’s very loving. He’s hit or miss about strangers, or even acknowledging that they’re there.
• Aggression - We’ve had it repeated to us several times that an aggressive act is not the same as aggresion. He’s so fidgety sometimes that he can be rough as he rolls all over you rather than sitting still. That said, he hasn’t struck out in anger that I know of.
• As far as we know, his hearing and vision are fine based on previous tests.

Phew. Got all that? We’d love to hear how your child is similar or different from this. They don’t call it a ’spectrum’ for nothing, and there’s so much for all of us to learn. I didn’t even cover a bunch of stuff. If you have questions, feel free to ask!.

If you got here by way of one of our words at The Big Word Project, all this worked! Welcome!

Both Hands and a Flashlight started as a blog where my wife and I could try to connect with other parents of special needs kids. This isn’t a requirement of anyone wanting to join the conversation. All parenting topics are fair game, though we will focus a lot on the challenges our son is facing these days. This blog may be serious, funny, biting, full of witty repartee, hopefully foul-diaper-free, certainly hopeful, and all about doing what it takes to help your child grow into whatever little person they were meant to be.

We’ve just started recently, which has amounted to us diving headfirst into explaining everything we’ve been through and everything that we’re learning. We’re just going to catch everybody up as we go.

We just started this site so we have some design issues and features to work on. Until then, stay a while, read the posts, and subscribe to our blog. More importantly, leave us a comment! Say hi, ask a question, say something witty, say something not witty, or whatever floats your battleship.

Also, read The Both Hands and a Flashlight Manifesto and the witty introductions in “The quest to find our own asses begins”. That’ll give you the gist of things.

More to come. Again, glad you made it!

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.”