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.

Who's got the problem here?

When I was a kid, way back when there wasn't enough history for a WHOLE book and electricity was just a couple of people standing around with a piece of wire wondering what to do next, my brothers and I used to like to watch when my dad fixed stuff. Invariably if I made a suggestion nobody paid attention but if one of my brothers said it - "Good idea. Lets try it." Frustrating. Ironically, none of them can fix anything electrical where I do have some success...just saying ;-). I don't know if it was because I was a girl or because I was younger but they didn't even hear me or didn't believe me, or perhaps couldn't imagine I had learned anything.

Recently I realized I am guilty of doing the same thing to Dakota. When your child has always needed extra help...extra time...extra explanations, you may not see or believe it when that changes- even a little. Or maybe you resign yourself to no change and so you don't acknowledge it.

Dakota had a school program and I wrote it on the calendar. The day before he said he couldn't wait to go "tonight". Now understand, he can tell you the days of the week and that there was time before today but it's not always clear for him. For example, if he wanted to tell you something happened at some point before today he might say "yesterday last morning" or "another day last night", either of which could mean yesterday or last week. So when he said 'tonight' I assumed he was just confused and told him it was tomorrow.

Tomorrow came and when I said to get ready he insisted it had already happened and we missed it. I insisted just as vehemently that he was mixed up and to stop arguing. We sat in silence for 5 seconds before he said- with some attitude- "Why don't you call my teacher?". The insolence, implying that I was...

Yep, he was right and boy was my crow tasty. I had to apologize and I promised us both that I would give him more credit. And in the spirit of justice, he gave some payback. I took his suggestion and called his teacher and, with some attitude of my own, said that Dakota mistakenly thinks there is no program tonight- perhaps it was canceled (I'll show him)? "No", she assured me, "He's right. It was last night. I thought it strange that you didn't come so I asked him about it." I believe his exact words to her were "My mom is very confused." Smart aleck.

The most wonderful time of the year

Have you ever been in a church when its time for a song and the minister will say "Please stand as you are able and we will sing together." The requirement is not that you are able to sing but that you can stand...My son can stand.

Now don't get me wrong, he loves to sing but part of his auditory processing problem is that he cannot remember words. Then there is his apparent lack of innate ability which prevents him from carrying the tune. He can sometimes carry it; often during a song he carries several different tunes. Over the course of a song he uses more keys than a high school janitor- sometimes even the right one. When he finds the right key he has a lovely voice; and if heart and the joy of singing count for anything he is the next Pavarotti. He loves it and is beginning to make some progress at it.

This year a minor miracle happened. The very same music teacher who laughed and scoffed last year when I told her Dakota wanted to be a music teacher like her, asked him to be in the choir. You cannot believe what this meant to him-and to us. He is not easy to wrangle so this was quite an undertaking for her. I made a point of seeking her out and telling her what this has done for him and how proud it makes him.

So here we are at the Christmas season and its time for carols and school programs. Dakota has figured out that his penchant for endless repetition (often a symptom of autism) is very helpful in learning songs. He has also learned that his CD player has a repeat song button. The good news is that by listening to 'I Want a Hippopotamus for Christmas' 500 times so far in December, he knows 80% of the words and stays on tune most of the time. The bad news is I think the hippo must have sat on or made off with the CD because I haven't seen it in a few days. Darn the luck :-)

The truth is

When I write these posts I have 2 goals: 1- to perhaps give people a little more insight about people with special needs by making them more visible and real, and; 2- to bring some humor into it. Hopefully the second part is obvious and successful most of the time, but sometimes its just not possible nor realistic.

Dakota has spelling tests on Fridays so we practice everyday. The first part of the week I don't make him spell them from memory. He has the list in front of him and he writes each word 3 times, spelling each one out loud as he writes them. Then we make up funny sentences with his words so he knows what they mean. As the week progresses we write them on the window with dry erase or cut out the letters and say them out loud as we put the words together. By Thursday he has to spell them from memory.

The other evening we were doing his spelling homework. It was a Tuesday so he still had the words in front of him. He wrote them all out 3 times and had the paper in his hand. I asked him to pick out a certain word- which he did. Then I asked him to look at the word and spell it out loud. He stared and stared at the word but couldn't do it. He knows the word, he knows the letters, but somewhere between the page and his recall mechanism he completely lost the connection.

I must admit to you a moment's feeling of defeat and hopelessness. Let me reassure you that it didn't last too long because there is so much he does know and more and more things he catches on to all the time. But right at that moment what crossed my mind was that this will never end. This kid is going to have to struggle every day, and every night we will be sitting here pulling every letter and syllable out of him. And when we do math the disconnect grows. Some times it just makes me feel tired and frankly, ill-equipped, to think about how to get through to him and how much each day is enough to push.

Eventually as I said the feeling passed. I will always do whatever it takes for as long as it takes to make his life is easier and better. But that doesn't mean I'm not overwhelmed at times. The truth is, we both are once in a while.

Let's fix this thing

Ahh parenthood, the memories it invokes. Like those great threats your parents used on you. You know, the kind that only children or people with the common sense of a stalk of celery would believe: Talk back to me again and you'll be grounded until you're 21; If you kids don't quiet down you won't be able to sit down for a month; If I have to stop this car, I will leave you at the Stuckey's for gypsies who'll take you to Romania and make you tend goats (was that last one just me?). Disciplining children is tough. You have to teach consequences AND get them to do what you want/need them to do. This is not easy with any child. And its not easy to get them to explain why they do or don't do something- heck that blows right by most adults, including me. I find it that much more difficult with Dakota because of the disconnects he has in processing complex problems.

Recently at school he has been refusing to do his work and sometimes telling the teacher he doesn't have to listen to her. My first reaction is to tell him the negative consequences for this behavior (I have taken the Stuckey's drop off out of my threat arsenal). The first day it happened he couldn't play with his favorite toy or watch t.v. The next day was the same so besides the other punishment we added that he had to stay in his room (which he hates because he wants to be in the middle of things). But we also tried a positive reinforcement by saying a fun thing he could do the next day if the report was good. Nothing- same problem the next day. My first impulse was to tell him all the horrible consequences he would have to face if it happened again- which I did. Actually my first impulse was to threaten him within an inch of his life but even he thought that was unlikely. And frankly I am not sure his mind can think that far ahead or make the connections between two things all the time. I know that cause and effect exercises are something they work on at school in the special ed classes and maybe we need to do more of them at home.

Instead we went with a 1-2 punch (not literally, that whole "within an inch" thing was just hype). We did tell him the consequences would be getting worse and we also went with something Helen learned which was to reinforce the positives. That is, we had him tell us what he could do to stay out of trouble and have a good day. We asked him this several different times throughout the evening and morning. We explained what good things would happen if he did his part and what consequences he faced if he didn't. We made a contract with him to make it seem more important and grown up.

I don't know which thing did the trick or if it was a combination but today was much better. He did get the promised rewards and was very happy. We asked him several times if he could see that this was better than what happened when he didn't follow the rules and he said he did. I guess we'll make it part of the morning routine to talk about what you have to do to stay out of trouble and have a smooth day. If it keeps working, I think I'll incorporate that little talk into my and my employees' day as well. Maybe my life will get easier all the way around.

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.