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.