Getting Help

"Is there anything else you think we should know about your child to assist in his assessment?"

The question mocks me for a week before I finally buckle down and finish the paperwork to begin the process of having Nemo evaluated. What do I say? Where do I begin?

He's always been different. I've always known something was different. He's not my first trip around the child rearing block.

When he refused to make eye contact, or broke it after a nanosecond, we blamed it on his eyes. And when he stood too close to people when he was talking to them. Or when he walked up to a strange teenager and got right in his face and said "Hey you guy! Play! You da BAD GUY!" And when he couldn't pay attention at t-ball practice and had tantrums instead, the same t-ball that he'd been begging to play. But then he had his eye surgery, and nothing changed. Do I tell them that?

We thought he threw tantrums because he was the baby. Because he was competing with three older siblings for attention. Because he was frustrated that his eyes don't work the way they should. We figured he'd outgrow them. But he hasn't. He still reacts like a three year old when another child takes a toy from him or when he has something he shouldn't have and someone has to remove from him. Do I tell them how, at a party last spring, he got mad at another boy who splashed him in the kiddie pool and jumped on the kid's back, put him in a headlock, and would have drowned the kid had I not seen what was happening and sprinted across the yard, jumped into the pool and bodily dragged him off the kid? And that he really has no understanding of why that was not a good thing to do, despite several of us both hysterically (me) and calmly and kindly (Little Man's baseball coach at the time and the father of the child Nemo jumped who is one of the most awesome people on the planet) explaining to him that it was dangerous and it hurt the boy? And how he cried for hours when I took him home because he didn't really understand anything other than everyone was mad at him? And how I cried for hours after he went to sleep? Do I tell them that?

Do I tell them that he often can't walk by anyone without touching them in some way, be it running his hand across their back or punching them in the arm? Do I tell them how he doesn't seem to understand how others feel when he hurts them? Or how we've been working on how people sometimes don't like to be touched and how we can't do that without permission and he just. doesn't. get. it? Do I tell them how he climbs on everything, how he's been jumping down the stairs since he was a year old, how he hurtles through life at top speed from the time he gets up til he collapses in sleep again? Do I tell how amazed I am that we haven't hit the emergency room more than we have, because he has no judgment about his capabilities and no fear?

It was easy to tell them about last year at school, when his teacher told us he had trouble crossing the midline (moving his right hand to the left side of the page and vice versa) when coloring, if they could get him to color at all. He hated doing it. They tried finger paint and other media, he hated having things on his hands. She told us to work on pencil grip over the summer, and scissor skills, and we did, when we could get him to do it. She told us to give him nuts and bolts and screws to practice putting them on and taking them off. We did; he threw them at us in frustration. He has a wicked arm.

It was easy to tell them about this year in school, where he can count up to 20 and knows his numbers by sight up to ten and can do rudimentary addition and "take away" if you talk him through it and he can recognize patterns, but he can't write the numbers. Except one. Straight lines aren't hard. It was easy to tell them that for some reason, he isn't learning the concept of letters as readily as he did numbers, not just the shapes and names of the letters, but the sounds, too. It was easy to talk about the weirdness of his pencil grip, how he turns his hand upside down and tries to hold the pencil with his pincer grip, between his index finger and his thumb, and how we've been working on that daily for months, and how now he's progressed to picking up his pencil in his left hand and putting it into his right, then using the left to shape his right hand around the pencil into almost the proper grip, just like we do to help him. Almost right. And how he holds the pencil too high up, and doesn't seem to be able to press hard, so his writing is light, as though a feather had danced across the page.

But I don't know whether to tell them that he's loved trains seemlingly since birth and wants to know how they work, and how we used to go to the Gaithersburg Museum when they had their train layout and he befriended an older man who teaches lessons on train history there and impressed him by knowing not just what pistons are but how they work? At three years old. Or how he'll sit for hours, almost the only time he sits that long, and look at his father's model railroading magazines, planning the trains he wants to get when he gets big? Or how, since this is a house full of gamers, he can play Minecraft for hours, building his own structures and making minecarts and corralling his own cows, and how you can practically see his brain bouncing from thought to thought, and how his game playing and building skills in Minecraft are as good as any of his siblings, and far superior to theirs at that age?

Do I tell them about the days, the awful days, when he starts out by hurting a sibling, or pinching or kicking me in defiance of something I've asked him to do, when we put him in timeout, and take him back, and back, and back, and it has no influence on him? Or the few dark days when after nothing else worked we spanked him, and that didn't work either? Do I tell them about how for two years now we've worked diligently on defining scripts for him to use in various social situations because he has no idea what to do, what to say, how hard we've worked on defining expectations for him? About how hard it is for him to transition to new things, about how he thrives on routine, routines that all too often need to change, because of the nature of life with a family of six people?

Do I tell them about the good days, the times when his siblings get home from school and he starts running as soon as he hears the door, yelling "Trout!" or "Sunny!" or "Little Man!" and grabbing them in a bear hug, desperately happy because they've been gone all day long and he missed them? About how lively and interested he is in computer games and trains and how he can talk forever about them? About our nighttime bedtime routine, where we sing along to the Piggies song on his jazz lullabies CD, the two of us together, sometimes with me holding his toes, sometimes with him holding mine, and then how we snuggle together on his bed, and he pats my cheek, still, or asks if he can "have your tummy, Mommy" because he wants to rub the soft skin, and how I've been working on teaching him that isn't appropriate anymore, but it's a holdover from nursing, which I have no doubt that if we hadn't forcibly evicted him he'd still be doing, and he wants the skin to skin contact? He doesn't care if it's appropriate or not. It comforts him. Or how last year, as we were leaving school on his last day before his surgery, and I mentioned that his teacher would miss him, he said "Hang on, Mom" and went back to the playground to grab her in a bear hug so she wouldn't miss him so much?

On first blush, any of these things can be obvious, or completely hidden. Most often they're subtle; you need to spend a few days with him, see him over time, before the full enormity of what's going on with him hits you. He has good days and bad days. And really my greatest fear is that on the assessment day, he'll be having a good day and they will tell me he doesn't need any help at all.

Comments

[carol anderson]

You are doing all the right things with him. I see some of this at school, also, but, also, more ability to.do some things you don't see. He was avidly participating in a story I read today and focused well. He drew that great picture you saw. He played, mostly successfully, with the new marble game. We will work on whatever they tell us together!

[Stacy]

You tell them everything you said here.
For what's its worth: I, too, was scared Noah wouldn't get a diagnosis... Way back when. I know now that any good professional will see the whole picture and take it all into consideration. But please, tell them everything. The fine motor issues, the sensory seeking bEhavior (jumping off stairs, rubbing your skin), that's also 'problems/inability to self soothe and or regulate', the short attention span, problems initiating appropriate play/interaction w/ peers.
I'm proud of you for doing this for him. He needs some help and it's coming soon. You won't regret this, I promise. Be strong and let me know of/when u need a chat or a listen. Where are you gettig the eval? MSG me....

[jodifur]

You tell them all of that and they connect the dots. And if you don't get the answers you want you keep going. I am a firm believer in mothers intuition. If you always thought something was "off," you were probably right.

I'm here if you want to talk.