It's not my first rodeo

I love this time of year. It's a great time for being outside and doing great holiday type things. Last week we went to a corn maze for a Saturday afternoon. We do this every year. It takes about an hour to get there so we make a day of it and go out to lunch after the trip. Dakota loves it. And we love it, especially now that he's older. We can send Dakota and his cousin inside and just sit on the outside with hot chocolate, every once in a while answering their calls of "Where are you?" with "I'm right behind you". That can be our secret okay?

In the middle of the maze there's a "bridge". It doesn't go anywhere but you can climb up and look around to figure out where you are and then continue your trip. The steps are pretty steep; even those of us approaching middle age (no laughing) have to watch ourselves. Part of Dakota's syndrome includes under-developed muscles, in his case particularly in his legs. Consequently his legs are not that strong and coupled with his depth perception problem, stairs can be quite a challenge. We (us and the physical therapist) worked a long time on getting him to use alternating feet to go up and down stairs rather than just leading with the same foot all the time. He has finally worked that out most of the time but he will convert back when he is tired.

There we were in the maze at the bridge. He climbed up and then was coming down- with a little difficulty -as we watched anxiously. We felt obliged to add "Be careful, the stairs are steep" more out of habit than anything. To which he replied "I know. These aren't my first stairs you know."

Well of course we though his channeling of Joan Crawford was cute but then we had two questions: 1- Is it time to let him go a little, and 2- where did he learn this sarcasm? Frankly I only had the first question. Secretly I was thinking he was a chip off the old block.

As a parent you want to know that your child can be independent- that's for all children. When your child has had extra needs it becomes more important but somehow it makes it harder to let go. You don't want them hurt or frustrated certainly, but maybe you also- well maybe I- have a hard time changing. I think he is letting me know its time but I'm not sure it is for me.

Tag, you're it- again...and again...again

I think all of us have had the experience of being picked last for games or teams, am I right? Some of us? A couple people? One techno geek in Cheboygan? Anybody? Okay, I alone have had the experience of being picked last on many occaisions. I was picked near the top for spelling or history bees but its hard to parlay that into sex appeal in 5th grade. Still, I did have a good experience. And I did get to be both the "hide-ee" and the "hide-or" in hide n' seek as well as the "tag-ee" and "tag-or" in many of the various spin-offs of tag. Not so for my son.

I watched him playing outside the other day with his cousin and a couple of other children. They were playing tag and big surprise, Dakota was it. I have watched him play various chasing or hiding games with neighborhood kids and others before and though the names and faces change, there is one constant- he is always IT. I admit he doesn't always get the nuances of these games so he is usually pretty easy to find or catch but come on, there's no way that's an accident.

Now inserting the requisite disclaimer that I of course AM biased but harbor absolutely NO lingering bitternes toward the emotionally stunted delinquents who were part of my youth, I think the choosing of Dakota as "It" is by collective agreement. They don't discuss it among themselves - at least I don't think they do- yet they arrive at the same choice. Do I think this means that they are all cruel and picking on him? No. I think they all want to win a few times and they know they can get by him pretty easily and he makes an easy target- the same way people zero in on the weaker at any age. If they were to play long enough they would probably, eventually, tire of him being it and decide it would be fun for them to be it for awhile. Still, don't you think it's worthy of an anthropological study to see how this works? If it weren't my kid, I definitely would.

It's hard not to just get angry or sad when I see this or to make it personal, that is- about me instead of him. Maybe it doesn't bother him; maybe he's just glad to be included and that's good enough; maybe I'm making too much of it; maybe I just think "You're not going to treat my kid that way" nanny,nanny, boo,boo. Nah, I'm way more grown up than that.

Fear and Loathing

So sorry for the long absence. I've just gotten back from a week-long convention in Las Vegas and the time went by just like...a year. I love Las Vegas but when it takes you longer to get across a street than it did to fly there, its enough. The hotels are so big now I have to bring a snack and emergency contact information just to go from one end to the other. But seriously folks...

When I am away my mind wanders all over the place about what things might happen to my family while I am gone. This time I also had time to think about how vulnerable special needs children sometimes are. Recently there have been 4 events concerning Dakota's school bus. He is supposed to be dropped off at daycare after school because no one is at our house. When children are dropped off at their homes, the bus driver is supposed to actually see an adult come out of the house. If no one comes out, the driver is to call the house and if they get no answer they have to bring the child back to school. Twice Dakota has been dropped off at an empty house. One other time he laid down on the seat and fell asleep; the driver forgot he was there and started back to the bus barn. Fortunately Dakota woke up and so was eventually taken to daycare. Once when he was dropped off at home, I happened to be there and headed back to my office. I opened the door and there he was but there was no bus around and no one had called me. In fact, no one called me any of the times he was dropped off at the wrong place or even when there was a bus accident and he was missing for over an hour. If I had not by chance been home, I have no idea what would have happened. Most of my neighbors work during the day so where would he have gone? Most kids might stay around in the yard or garage and wait but for how long and what about if it was freezing outside? Dakota cannot tell time nor does he understand the concept so he wouldn't know when we were coming home. I fear he would try to walk to a store; or who knows who might stop and hurt him or talk him into going with them. Of course we tell him about strangers and all of that but he is still just a little boy who can't fight back and, because of his disabilities, is easily influenced. Every parent worries about their child and strangers or even just crossing the street, but eventually the kids reach an age where that is not as big a concern. They can cross bigger streets or would know to stay around the house if no one was at home. But you don't always know with special needs children if they understand or if someone might be able to say something to them in just the right way that makes them forget what you taught them and listen to the stranger.

These things make it so important to make sure your kids know your neighbors and what to do in case of emergencies; whose house can be their back up to use the phone or wait for you. Those of you with special needs neighbors- please take the time to let your neighbor know you would be there for their child. I know I would appreciate it and I would do the same for you.

You scared half the life out of me

I've mentioned before that Dakota has an auditory processing problem. One of the manifestations of this is he mixes up phrases, especially ones that rhyme. For example, Hannah Montana always comes out Hontana Matana. He has often heard the expressions 'You scared me half to death' and 'You scared the life out of me' (doesn't my house sound like fun ;-) but his mind processes these two together for some reason and he comes out with 'You scared half the life out of me'. Whichever expression you want to use he did it to us again this past week.

Dakota did something he shouldn't and as a result we spent overnight Friday in Children's Hospital. We were really scared for a bit; fortunately by Saturday morning the doctor said he would be fine but he would still feel bad for a while. My lips said "Thank God" but my mind said "Not as bad as he's going to feel when I get him home". I had reached, in that tiny uncomfortable ER cubicle, that fine line I believe we all find in these situations where you vacillate between the joy of relief and the desire to beat the child over the head with their bedpan. Happily, more often than not the relief wins the tug of war and everyone goes home in one piece. But this does bring up larger issues.

I am not sure that someone else did not help to convince him to do what he did and that scares me. Its at these times that Dakota's inability to communicate well is most frustrating. Most children when asked why they did something will answer, after great thought, "I dunno". Next they may add "Johnny told me to" but eventually they come up with something if only to shut you up. Dakota is absolutely stumped by why- it's as though the whole concept makes no sense to him. Now don't get me wrong, he will ask us why all the time but thats just a weapon in his arsenal of 'Things to Annoy People With'. I know because even after you tell him it doesn't stop him from talking and saying why until you put your head in the oven (which I don't recommend,especially with an electric oven). It seems he does not understand the question. He also has no concept of time so he could not tell us when this happened (an important piece of info if you are poisoned or eat bad food). So the scariest part of all this - well after the initial fear for his life and the final scare when the bill comes in- is what might someone talk him into; or what might he do because he does not understand consequences. Dakota, like many children with neurological disabilities- autism, FAS, others- are very literal so we have to take great pains to point out when he watches something in a movie or on TV that it is not real and people cannot do those things. Of course many of these issues are true of children who don't have disabilities too but they grow out of them eventually. I don't know when or if Dakota will and that means we have to be vigilante all of the time for subtle clues in his behavior or things he says off hand about something he saw or someone at school or daycare. People will often take advantage of the fact that children with his type of problem cannot tell an adult what happened or that they don't even understand that what a "bad" person told them to do was wrong. I look at his sweet face and feel so much love and yet so much worry. This parenting stuff sure looked easier on the Brady Bunch.

An Honest Question

For the first few years of his time with us Dakota's question asking ability was pretty much limited to, "Car? Car?" and "What's your name?"

"Car? Car?" came from his relentless desire to sit in one of our cars and pretend to drive while one of us sat in the passenger's seat and pretended not to want to bang our heads against the dash board. "What's your name?" was the question he heard most often from others. I'm not sure he even knew what the question meant - he just knew that it was something you said to someone when you wanted to engage in conversation. And bless his heart, he wanted so much to engage in conversation, but the only conversation starter he had in his arsenal was, "What's your name?".

I finally banned him from the question, "What's your name?" I mean, there are only so many times you can answer that question in one day without really, seriously, beginning to doubt your identity. I tried to encourage him to expand his conversation skills. When I could see him struggling to start a conversation I would talk about anything, "I see a blue car driving in front of us. It looks like there is a woman in the blue car and I think she is going to the grocery store to purchase tomatoes and lettuce so she can make a salad for dinner, not that it's her responsibility to make dinner because if she has a husband he is as capable of dinner making as she is ..." Anyway, this was exhausting for me because I am an introvert (an extreme introvert) and, frankly, conversation is a huge effort for me. No one ever accused me of being afraid of long silences.

So when he was five years old and we got our weekly call to come talk to the Principal (sometimes more than once a week) I was a little surprised that the topic d'jour was, "Dakota is asking inappropriate questions." On this particular day I faced an impressive gathering of school staff: the Principal, his teacher, the school psychologist, the special ed teacher, and I don't remember who else.

"What kind of inappropriate questions?" I asked, because while "What's your name?" is an inappropriate question when he's already asked you the very same thing 172 times, I didn't think it warranted this kind of response.

"He asked me," his teacher sniffed, steeling herself before she could continue, "if he could see my breasts."

I looked around the room. Seriously. Seriously? This is the question that precipitated the need for a five person crisis response team? "Well," I said, "I told him he couldn't ask 'What's your name?' any more, so I guess he found a new topic."

Please - like there was a five year old boy in that class who didn't want to see her breasts. He was just the only one with the chutzpah to ask!

It's Just Not Fair

Mel and I were both early readers. Very early. We were both reading well before we started school. We knew from the onset that while we both would love to have had a precocious little prodigy toting around a copy of Little Women at the age of eight - that just wasn't going to happen. Prior to taking guardianship of Dakota we had a discussion about our goals as parents. Other than keeping the kid alive and safe, what did we hope to accomplish?

We both agreed that we wanted him to be "happy" (whatever that means), but we also wanted him to be kind, empathetic and compassionate. But deep in the back of our minds we were also thinking, "Once he gets here with us and we , (we of the intellectual superiority) start stimulating his little noggin, why he'll be caught up in no time."

And so, I decided that my first task as his cognitive sensei, would be to teach him to count to five. Now, remember, he is 3 1/2 years old when he invades moves in to our home. So, this counting to five thing should be no big deal, right? Right?

We counted to five without ceasing. In the tub, in the car, in the grocery store. While reading "Go Dog Go" (possibly the best book ever written) I would take his little finger and touch the dogs as we counted, "One, two, three big dogs coming out." We counted goldfish. We counted M&Ms. You get the picture. Only one to five. I didn't want to overwhelm him. It took at least six months. SIX MONTHS!!! before the kid could finally count one to five on his fingers. SIX MONTHS. And then I go and read about this kid who just spontaneously scratched out the table of periodic elements during her infancy. And all I can say is, IT'S NOT FAIR. IT'S NOT FREAKING FAIR. And sometimes that's what I want to do. I just want to scream because we have done so much work on his cognitive development and now, at the age of almost 10, he still struggles with "Go, Dog, Go", which he's had read to him 122,394 times. If any other parent put forth the kind of energy we have put forth, their ten year old would be a CEO by now.

But cognitive development was never the top goal of our parenting, and if I have learned anything in the past six years, it's that cognitive ability has absolutely no bearing on the value of a person. I love this kid more than words could express and I would change nothing about him. Nothing. NO-THING. He has my heart and I think he's as close to perfect as is humanly possible.

So, last Sunday morning I was teaching Sunday School to 4th and 5th graders. I grew up in a conservative church where Sunday School was all about indoctrination. As a result, I have a slightly different approach to Sunday School and this approach frequently involves Veggie Tales videos and hot chocolate. There were ten kids there this last Sunday. I was serving the hot chocolate, delivering two mugs at a time to the waiting hands of kids engrossed in "Little Joe". As it happens, Dakota was the 8th kid to get his mug of hot chocolate, but was the first kid to unglue his eyes from the television, smile up at me and say, "Thank you."

Didja hear that .... all you parents of "typical" kids? My kid said, "Thank you" while your brainiacs couldn't muster so much as a grunt of appreciation. My kid rules and your kid drools. Suck it.

Emotion

Children with Autism disorders, FAS and other developmental problems do not show a lot of emotion except frustration and anger. Frankly, neither do I but I choose to call that menopause. I'm pretty sure that my language and attitude when I was out driving was much sweeter 20 years ago- oh who am I kidding, I made sailors blush then too.  But the point is, I don't have a reason for my behavior or for not showing other emotions, but those afflicted with these syndromes do. Dakota is no different. He can go from 0-60 on the anger or frustration scale in 4.8 seconds; however this is much better than it used to be.  What troubles me more is not showing other emotions. And its not because I don't think he has them- he must- but because I worry about how he is doing inside and how not showing them or understanding them will effect him throughout adulthood.

There is a little girl in Dakota's class - they have been together since 1st grade. Last year (3rd grade) she left about halfway through. I found out that she was taken away from her home because her mom beat her. She was not there the first weeks of school but now she's back. Dakota told me this one evening and I said great. His response, "Yeah, her dad trusts her now" (I assume he was trying to say that her dad is trusted now to take care of her). I was still concerned because it was her mom -I think- that actually was abusive so I asked if he had seen her mom, "Yeah, he said, "she trusts her too. She doesn't hit her anymore." Very matter of factly. When I asked how all this made him feel he said- "Nothing". We tried to explain emotion words to him like sad, angry, happy, scared and asked if he felt any of these- no. I don't think he has memories of the abuse he suffered as a child in his birth home but I don't know so I can't say if this makes him think of his experience or feel as he did then. Would he rather forget it, or is this part of his disability that he does not know how to express these things or even what they are? I am going to be asking some experts these questions- I'l keep you posted.