Neat Little Packages

From Guest Contributer - gouldie64:

I am a big fan of categorizing things. I create folders for my emails. I love to sort Legos (which, by the way, should be sorted by shape, not color). I am a big fan of tagging photos. For years I wanted a category for Dakota. I wanted to find a term that could neatly define him and explain his behavior and abilities to others.

When it comes to Dakota, however, attempts at categorization or labeling have not only failed, but have failed miserably and painfully. Recently Dakota's other parent (the regular contributor to this blog) suggested that we take Dakota in for an evaluation regarding his auditory processing disorder. My initial reaction to this was that I don't need an evaluation to tell me whether or not he has an auditory processing disorder. I know he has one. Just like I don't need my doctor to make that face when I step on the scale at her office. I know I weigh too much, so she can keep that little look all to herself.

My other reaction was to recall Dakota's other two "evaluations", both of which ended with parent(s) and child in tears.

Rhode Island - 2004: Dakota's first evaluation was a neurological evaluation which took place about a year after he came to live with us. There we sat, in a room with a physician and three residents, as evaluated every "anomaly" they could find with our child. Did you know that there is a medical term for "unibrow"? It's called Synophrys. We heard all sorts of terms that day: Synophrys, microcephaly, incurved distal metacarpal, pointed helix, and hirsutism. All of that those terms to say that Dakota has a unibrow and a small head; that his pinky fingers and toes point inward; he has a pointy ear; and he's a hairy little guy.

It's very discouraging to spend three hours watching and listening as a team of medical professionals catalog everything that's "wrong" with your child. The discouragement quickly turns to rage, whoever, when those cheeky little residents start to make bets on the root cause of these various abnormalities: ("I bet it's Fragile X Syndrome." "No way, dude. We're looking at a trisomy.") I don't know how much Dakota understood of what was being said about him that day. I distinctly remember, however, the meltdown that came later that night. In the end, his evaluation gave us nothing but fancy medical terms for a whole bunch of physical characteristics which may or may not be related to or caused by a genetic condition. That was helpful.

The second evaluation was an evaluation for Fetal Alcohol Syndrome (or Affect or whatever) and while there was only one physician instead of a team of physicians, the end result was pretty much the same. Perhaps this evaluation would have gone better had the physician not suffered from OCD. He repeated every procedure at least five times. One procedure, for example, was to compare the philtrum (that little dip between your nose and upper lip) to photos of philtrums, each of which had a numerical score. A smooth philtrum is a feature of FAS and establishing a quantitative description of the philtrum is one step in evaluating a person for FAS. Five times, FIVE TIMES, he held the photos up to Dakota's nose. Each time I said to myself, "It's a four. It's a four. It's a four. It's a four". Finally, after the fifth attempt, he wrote down a four. It was pretty much the same when he measured the space between Dakota's eyes, the width of his eyes, and the circumference of his head. For each he measured at least five times.

Then, for some reason he had to make some sort of evaluation of Dakota's testicles and this evaluation involved a little squeeze. On the first squeeze Dakota looks at me, his eyes widen, and he giggles. Yeah - that's not gonna last until squeeze number five is it? Squeeze number two and Dakota begins to look concerned. The doc goes in for squeeze three and Dakota starts to cry. I somehow restrain myself from throwing the doctor across the room. Instead I pulled away his hand and exclaimed, "You're hurting him!". He explained that he needed to finish his evaluation and I explained that we were very, very much done and he could leave while I dressed Dakota.

In the end neither evaluation gave us helpful information. You can Google Dakota's symptoms and you will come up with something called "Cornelia De Lange Syndrome". Big Whoop. That gives us a label, a neat little box in which we can file these seemingly random and unrelated physical features. We can tag photos of him on Flickr with "CorneliaDeLange" and his photos will be chunked with photos of other kids who look surprisingly like him. There is no known root cause for Cornelia De Lange syndrome. Children get included in this exclusive little club if they look the part, and Dakota looks the part.

I'm pretty much done with these evaluations. I no longer feel the need for categorization. Dakota is much more than a collection of physical anomalies, and cognitive disorders. He's my son, and that's the only label I need for him to have.

Discipline is a four letter word

One of the hardest things about parenting is disciplining, especially with consistency. These two words might as well be in a foreign language for me. I am only disciplined until the cookies come out of the oven or the alarm clock rings so I can "get up early and exercise". At least I'm consistent in my sloth.
Recently Dakota has required some extra disciplining for trouble at school. I've mentioned his quick to anger response before and I still don't know if this is a defense mechanism, if its just the easiest one for him to show or access, if its one he understands so he uses it (can't imagine where he might get that), or if his impulse control is so underdeveloped that he can't figure out how to stop it. We try to teach him other ways to handle situations he doesn't like so perhaps he won't reach the boiling over point. We talk about moving away from a kid who he is bothering him- though at times "bothering" is a stretch. Here's a conversation: Me: You got in trouble for pushing Johnny. Why did you do that? Dakota: He was bothering me. Me: What did he do? Dakota: He was looking at me. Me: What else? Dakota: Nothing. What's next I ask you- he was breathing too often?
We try to teach him other ways as well: ask the teacher to let you go to the bathroom or the other side of the room for a minute; try to squeeze your hands really tight and squeeze out all the anger before you do anything; try to sing to yourself so you won't pay any attention to them. I don't know if he really tries these things or just says he does. Of course sometimes, they just don't work and you say and/or do something you shouldn't (not that I speak from experience).
Disciplining turns out to be more difficult for me with Dakota for several reasons- and I am still researching whether or not all of these are common problems for children with Dakota's ASD and developmental problems. First, even at 10 because he is only developed emotionally about as far as 5 or 6, you have to follow quickly after the infraction with the punishment or he has no idea what he is being disciplined for. He is much like a cat in that respect, he cannot connect two events that are separated by more than a small amount of time. He may remember parts of it when you remind him of an incident but not the whole thing and certainly not the gravity of it. Last week he got in trouble at school and we were all going to have to see the principal (my palms are sweating even now) so we could discuss the punishment he would receive at school- separate from what he received at home. But then the snow came and he has been out of school for several days. Now I'm dreading the return for the meeting. Certainly he has to be accountable and pay the consequences but I'm not sure it will mean anything. I don't know if he will make the connection 6 or 7 days after the incident.
Second, I'm beginning to wonder if "he was looking at me" carries a lot more significance than I thought. Is it possible that in his mind any attention given to him that he doesn't elicit is "bothering"him; that he views that as some kind of judgment or criticism every bit as hurtful as calling him stupid or making fun of him? When bigger kids do it, he usually withdraws from them and goes to play in a corner much like he does when kids are playing something he doesn't understand; but when they are kids his age or kids in his class or even a teacher, he lashes out. Maybe it's because he knows them and is not afraid- just hurt and angry.
Whatever the reason, we have decided to take make an appointment at the child studies center in hopes that they can help us teach him the skills he needs to explain to us what's going on and what he's feeling. Maybe we'll all learn some new ways to deal with anger and people who frustrate us (I have no specific people in mind for myself with that last thought).

A brief commercial interruption

Do you ever wish that television had never been invented? I mean sure without it we would never have heard the story of a man named Brady or shared the mystery that is Oprah, but we also could have completely escaped all idols and losers and never had to explain Viagra to six year olds.
There's a commercial on these days for an office supply chain that features a man looking at every single item and exclaiming "Wow, thats a low price!" Even during the commercial, which is only 30 seconds, after the third time I want to wrap the guy in the copier paper and staple him to a dry erase board.  So imagine my delight to find that this is Dakota's latest obsession. I can't count how many times a day he says this. There's no particular reason for it and I have no idea what triggers the memory for him. He just belts it out at odd times: around the house, in the car, at school. It's like the commercial equivalent of a little Clay Aiken breaking out into show tunes at the drop of a hat.
Like most things I'm sure he is looking for attention with it. He got noticed and people laughed the first time he did it so he just keeps doing it. It feels good to get noticed so why not. He completely misses the facial queues and other nuances that let the rest of us know when something is enough.
I know I have mentioned Dakota's propensity for repetition and I think that is part of it as well.  I think repetitive speech sometimes helps him calm himself and gives him a way to interact with the "normal" world. He imagines that people will know the reference because in his mind everyone sees the same t.v.  shows or movies or even the same people at the store or on the street, so he will fit in. I think at times he falls back on these things when a conversation gets to be more than he can follow. And if this helps him to soothe himself or get his focus back then good for him. Maybe I should just not let him watch t.v. and stick with music instead. I mean what annoying phrases or bad language could he possibly get from popular music!

Different does not mean bad

There comes a time in every life when we reach a crossroads between adult and child (though I haven't reached it yet -ask anyone). It is by turns exciting, scary and sad- sometimes all in one day. Frankly, the same can be said for a typical day in menopause. I haven't changed my mind: if I'm still in menopause when Dakota reaches puberty, one of us is not coming out alive!
The exciting part is understandable: You can do more things, you get more privileges. Now that Dakota is in the double digits (he recently turned 10) his favorite expression is "Mom, can I __(fill in the blank) since I'm 10 now and a grown- up?".  I know times are changing and kids are maturing faster apparently;  and it may also be true that the laws of physics have been suspended just for me and Dakota is aging faster than I am (it could happen!) but someone will have to explain to me when 10 became the age of adulthood.
The scary part is also understandable- probably more for the parent than the child- because the child is unsure how to act and what to say. I mean, is Spongebob Squarepants now for "babies" and you shouldn't even bring it up to a 10 year old?
The sad part is not obvious to a kid but it is to the parents. And more so I think for parents of kids with Dakota's developmental problems. It's of course sad that you don't have your little baby anymore who says cute things and wants to sit on your lap; now you have a 10 year old alien who rolls their eyes at you and assumes you have traded your brain for a bowl of jello salad. But its sad for other reasons. Because of his cognitive disabilities, and maybe even because of his difficulty reading social cues, Dakota has not really cared what other people thought about him. If he wanted to use a walking stick and walk around the mall hunched over pretending to be Yoda- he did it; and if he wanted to wrap a scarf on his head as hair and pretend he was his teacher taking his class on a field trip when we went to the grocery store- he did it. And we let him. He has a great imagination, he's very happy and isn't hurting anyone, and honestly most of the time it's fun. I think a lot of kids wish they could do it too.
But now he's beginning to change. The other day he had some "hair" on in the car. When we got to our destination he said he would leave it in the car so the other kids "won't laugh at me." Now instead of just being himself he has to worry about what other people think. We have never told him to worry about that but we have always told him that when he makes a choice to do things others don't do, people might laugh or tease so he needs to be prepared. He already has enough reasons for mean people to ridicule him so if he is going to do these things we have to help him learn to cope. Until now his response has always been "I don't care. I don't listen." Sadly kids are now making fun of the way he talks or his inability to play certain games and he is noticing it. He is now learning that he doesn't want to give them any more ammunition.
This is so wrong. How many years and dollars of therapy and self-help books have many/most of us spent to get to the place where we can say "I am going to be myself and you don't have to like it or approve of it." There's a song I love from 'A Star is Born' that says "...they believe that strange is a word for wrong; well not in my song." I hope we can find a way for him to remember that and balance fitting in with being Dakota. He is not bad or wrong; he hears a different drum. Actually, I think Dakota hears the whole percussion section.

And miles to go before...no, thats not going to happen

There are two things that strike fear into my heart to even contemplate: Running out of chocolate in the middle of a movie, and; being on a plane for 10-12 hours with Dakota (actually there is a third thing: what if Larry King is the first person to live forever and he never leaves television -agh the horror!). The very thought of being on a plane for 12 hours with someone who doesn't sleep or stop talking is cause enough for a valium prescription. So why do it you say? Only my therapist could really tell you but I'll try.

This year I turn 50. What's that? How can this be? I look so young? Oh go on...really go on, please. Anyway, I want to take a big trip for my 50th and of course take Dakota, so I have been doing some planning. Big trip = long trip and anyone who's ever taken a long trip in a confined area with a child knows it is one of the tortures used by spy agencies around the world. Any child has trouble keeping busy and entertaining themselves on a long trip and in new places and Dakota's situation presents additional problems.

First the flight itself. Dakota is hyper so sleeping is not on his list of possible flight activities; and when he's nervous he talks non-stop. Second is the trip in general. Change is very hard for autistic children to deal with: there is the disruption in their routine, unfamiliar surroundings, a change in food, strangers, possibly even different languages. The combination of these can cause some behavioral changes that are pretty difficult to deal with- for him and us. Sometimes they will withdraw and refuse to participate. In Dakota's case he is more likely to become very animated and loud; do silly things; not listen- even become defiant. I'm learning that when that happens you have to remove him from the situation and the stimulus and get him into something familiar and routine. That is not always easy or convenient to do. And then there is the added difficulty of trying to determine if that is actually the problem or if he is just being a 10 year old kid who wants his way, requiring a whole different response.

How do we deal with all of this on vacation? How do we balance what we need to do to comfort him and help him control himself with not making his behavior the centerpiece of the vacation? Of course if I think he will have that much of a problem perhaps I shouldn't take him; but being away from us for 8 days would be just as hard for him- and us. Maybe the solution is to wait until he is a bit older for a vacation this big, or for when I am a little better at helping him with coping techniques. Or when I am more patient, well none of us have that kind of time and I may not even want to go when I'm 75.

Only the beginning, only just the start

Another year begins and like most people I reflect on the past year. The on and off (mostly off) diet; the wisdom of buying the lifetime insurance policy from AIG; and the really big questions like- if so many people in Congress are having affairs perhaps we really should be pouring more money into 'abstinence only education'.

Invariably my reflection goes beyond the past year and covers years and decades. Ten years ago I never would have thought I would be the mom of an almost 10 year old (Dakota turns 10 on Thursday) and five years ago I did not see as much hope for Dakota's future nor the great challenges that come with an older child with special needs. I went from assuming he would "grow out" of his disabilities and delays, to resigning myself to him never being able to read or hold a complete conversation, to gaining new hope as I hear him begin to read and learn new things. I often think he doesn't understand something and then he fools me when 3 days later he says "Hey mom, did you know that..." and repeats back what I tried to tell him.

My goal this year for myself is that I can spend more moments of hope and promise with him and fewer wasted moments being tired or discouraged. And I will try to remember the rest of the Chicago lyrics "Time passes much too quickly when we're together laughing" and make the moments count. We all get to start again every January 1st. It may be just another day on the calendar but we give ourselves permission on that day to forgive our failures and keep on going. Dakota has to, just as every "Thursday's Child" does, and as long as he is willing I have to make sure I'm able and then start again everyday. A happy and hopeful new year to us all.

And now, the end is near...

The holiday season is almost done and it has been interesting. Christmas Eve dawned with an ice storm and blizzard; our oven went out and we got stranded in a parking lot for 2 hours as we tried- in vain- to dig ourselves out. Of course Dakota had to go to the bathroom while we were digging and there was no place around but the great outdoors where it was 12 degrees and snowing/sleeting with a north wind at 50 m.p.h. Remember that song 'You don't tug on Superman's cape, You don't spit into the wind'? Guess what else you don't do into the wind- especially when your mom is standing near you trying to block the view.

We gave up on the car when at last 2 guys in a monster truck pulled in to help us. As my Christmas gift to you I offer a laugh: conjure a picture in your mind of two short, overweight, middle aged women trying to climb up from the ice without a ladder into a monster truck that was taller than the second floor of our house.

We made it home where we stayed. Christmas day began with the usual opening of gifts and the requisite 'ooos and ahhhs'. Dinner was cooked in shifts as we alternately trudged and gingerly crossed the ice to use our neighbor's oven. We decided to shower before heading out to retrieve my car when we discovered there was no hot water. Then began the suburban version of an alpine inn as we showered at another neighbor's warm house then ran out into the crisp sub-freezing air- not much different than sitting outside in a hot tub surrounded by a picturesque winter scene- well except for the trudging through the snow with your hands full of hygiene products, wet towels and dirty laundry hoping you don't land on your backside as you reach for your underwear which dropped from your arms and are flying down the street.

Despite all that there were many things to be grateful for and proud of. Dakota handled all of this very well. He stayed in the car while we were stuck and helped as much as he could- except for the frequency with which he said "We sure are stuck, huh Mom?" I believe there was a direct correlation between the frequency of the remark and the level of my temper but it could have been coincidence. And as luck would have it Lewis, the man with the truck, was a plumber and he had given us the name and number of the company he worked for, which we dialed first thing Monday morning. He happened to have this gigantic 1989 monster truck/life saver because his brother had given it to him out of gratitude...gratitude because Lewis had given his brother a kidney when his failed. And here was Lewis out using that truck to help others. We were not the first nor, as I found out when Buddy's plumbing sent Lewis to our house on Monday to fix our water tank, were we the last that he helped that day. He wasn't going anywhere or doing anything so he thought he would just go out and help anyone who needed it.

Was all this fate, luck, serendipity or coincidence? Who knows -but isn't that the mystery that is Christmas? And when people ask me what I hope for Dakota, from now on I can say 'I just hope he is like Lewis' and then tell them the story.