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.

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.

Clothes Make The Man

Dakota is not big on "playing". At least not the way other kids play. He is not the least bit interested in physical play like tag or chase. He doesn't really care for playing with action figures or cars. I can get him interested in Legos, but mostly because he wants my attention and it's something I can do with him for extended periods of time without going out of my mind.

Mostly what Dakota wants to do is role play, and his favorite type of role play is to play school. When we play school he is the teacher and I am the teacher's assistant. I never get to be the teacher. I always have to be the assitant. Dakota is exceptionally good at role play, and at impersonations. Almost since the day he arrived Dakota has had the ability to do dead on impersonations of our friends and his teachers.

While we all take delight in his talent for impersonation, I can't help but feel a little twinge when I think of how and why he developed these skills. I think of Dakota as an infant, lying unattended in his crib. He had to be so careful about how he reponded to his caretaker. He had to notice everything about her in order to gauge whether his tears would be met with a bottle or a curse. He spent his toddler-hood divided between three different homes. Completely powerless to protect himself physically he had to rely on his powers of observation to determine the safety of a new environment. In his early days with us taking a punch from Dakota was a sort of badge of honor. It meant he trusted you enough to know you wouldn't hit back. Thankfully the hitting days are behind us and he now has other ways of indicating when he trust you.

So, back to the impersonations ... now that we have identified something Dakota loves to do, and something he is very good at doing, I think our responsibility as parents is to find a way to help him to develop and share it.

One is the loneliest number

Yesterday I went to Dakota's school to take him to the book fair and bring a batch of cookies for his class.  I arrived at lunchtime and so half the school was in the cafeteria. When I entered I felt much like, I believe,  the minnows feel when they are dumped into the shark tank- I was fresh meat and all eyes were on me. Amidst the murmurs and giggles I was able to find Dakota's table. His class sits together (I assume all classes do) and were at the farthest table. I don't know if they have assigned tables but I hope they do because it is easier for the kids to remember; and I don't know if they seat them at the farthest spot for a reason- perhaps so they are not too distracted or so none of the other kids bother them. In any case, it had the effect - at least to me-of making them seem very isolated. As I mentioned once before I think (pardon the memory slippage - my mind used to be a steel trap now its more of a butterfly net- lots of things can get through) the children in Dakota's class have various disabilities: autism, Down's Syndrome, MR and others. Consequently they have various levels of social skills, eating habits etc. This leads to quite a bit of staring from the other kids. My heart hurt a little when I saw the kids at their tables and some were off in their own world, a couple had food all over them- some because they have hand/eye coordination problems but at least one because his parents don't like to be bothered teaching him as they don't think he can learn (it makes me so mad). The thing is, do they notice these things or do I? Do they care or do I? If I ask Dakota about it and he hasn't noticed, will this make him notice and feel bad? Maybe if they're off in their own world I should leave them there, maybe it beats this one.

It's What I said But Not What I Meant

Who else feels like they are in a continuous Abbott and Costello skit? Metaphors and idioms are abstract enough concepts to teach children anyway, but Autistic or FAS children are/can be very literal and concrete. You may recall the earlier blog about Knock Knock jokes; with that in mind we have been trying to teach Dakota when something is enough- when to quit. Here's the conversation: Dakota you have to know when to quit. Mom, I never quit. I know and thats good You said don't ever quit. Thats right but I don't mean that kind of quit.  But I'm not gonna quit. Of course not and I'm glad but I mean you have to know when to stop doing something. Well I stop when I'm done...and so it goes. I am not sure if the repeating is a comfort to him because he is proud of himself for making a joke or getting/understanding something; or if its the attention he got from the first time he did it and he liked that; or that he's just not "done"! Whatever it is, teaching social mores to anyone who is so concrete is very difficult. Children already take things very literally but Dakota's difficulty with processing complex or abstract thoughts makes it even more confusing for him (I know a lot of adults who have difficulty with anything more complex in substance or concept than a #2 pencil so he's not alone). I always figured he'd learn these things by watching others or listening; it never occurred to me that I would have to explain them. Of course you have the typical things you have to get kids to understand like how to greet people when introduced, answering when someone speaks to you (though sometimes what they say back makes me wish they hadn't) or not staring at people who have a disability or are in some way different than you. Dakota is allowed to ask us about it or even ask the person about it (like people in wheelchairs or with other obvious physical differences); but he can't go up to people who are large and say "hey how come you're fat" or other things that might hurt (occasionally the little cherub jiggles the skin hanging on my arm and laughs and says "Can I wiggle it again" - what a dear boy). Usually he won't go up and ask; instead he'll ask if he can be that person, e.g. he pretends to be a teacher at daycare who is a little person, or walk like someone else who has a limp- he loves to pretend. But subtleties are very difficult. Its hard not to get reduced to "because I said so". We try explaining that there are some things that hurt people's feelings but since he doesn't show a lot of his besides anger, we're not sure he is making the connection. And it doesn't seem right to bring up things that people say that have hurt him and make him live it again- though I recognize at times its necessary. I don't think he picks up on facial cues very well so perhaps I'll try working on those. Then its on to figures of speech. I can hardly wait until someone says to him "Lets not throw the baby out with the bathwater"- OY!

Day/Night at the Museum

We have been away at a conference in Chicago- did you miss us? We had a lovely time visiting aquariums, museums, very tall buildings (at the top of which (observation deck) I had to cling to the pillars in the middle of the room while toddlers offered to hold my hand so I could walk over to the glass and look out- show offs!)  and a baseball game. We did all this for the cost of the budget of a small nation yet, when asked, Dakota said his favorite thing was standing in the park in the fountain getting soaking wet- for free! Another stinkin' lesson learned.

Museum visits always pose a challenge to me with Dakota. The docents want to tell us all about everything-which is great- but they have no hint from looking at Dakota that he would have any trouble processing what they are saying. He usually stares at them either with a lost look or a goofy smile that means he's about to do something silly like making a face or falling on the floor to distract everyone from the fact that he doesn't understand what's going on. In these situations I will repeat what they said or play along with him and be silly or answer for him. Is this the wrong approach? I don't ever tell them he doesn't understand or explain why he doesn't, but we often end up just walking away which leaves me feeling like the goofy one or like I'm giving them the impression I am embarrassed by him. Of course in the end who cares what they think I just don't want Dakota to think I am embarrassed by him and I don't want him to be ashamed of me (I think he was a little bit embarrassed by me lying on the 94th floor of the Hancock building clinging to the fibers of carpet begging for help to get to the elevator). How much info is overload for him? I must remind myself that every moment doesn't have to be a teaching one after all. Maybe we can work out some sort of signal for when he has had enough that is between extremes of possible injury from falling down or the subtlety of his eyes glazing over. Perhaps a museum - outside of a children's museum or Dora the Explorer's kid's exhibit- is more than he can do right now. Oh great- now my eyes are glazing over.

Well We're Movin' On Up

Well the first day of school was pretty good... and now we have 3 days under our belts without a single meltdown or call to the office- we all deserve an ice cream cone!  Now begin the '160 Days of Dakota' - to borrow from a popular movie- that will show us all what we're made of. Today we went to school for his IEP, which is usually akin to nails on a chalkboard as we listen to the strengths and weaknesses and the euphemisms they try to come up with to sound good when it isn't really. For example: "He has a great imagination" = "He has no idea what's going on"; He's very vocal" = "He won't shut up". I believe the teacher used to tell my dad I was "an excellent leader" which equals "she's really bossy" (I liked to think of it as directive counseling). 

This time was different however- this time we heard some good news. Dakota's teacher did his beginning of year assessments and he has progressed some. His reading is up to a first grade level, his math is at 2nd and his comprehension is at 3rd. All the tests are modified for his disabilities of course but the point is that he has progressed and we are thrilled! And even better than that, because they know he likes to do science projects at home they are going to let him go to the mainstream 4th grade class when they are doing science experiments- wow! This is so amazing I can't even describe it. Imagine my son, who couldn't even speak intelligibly until he was 4, will get to be with the "big kids" his own age. This is both exciting and scary. I want him to progress and learn but I don't want the other kids to pick on him. His school is very good about this though- they absolutely don't tolerate ridicule and name calling; but of course it happens and he knows there's a difference.  But, all thats for another day. Today, we are going to do "big boy" things...do you think that includes picking up after himself? Nah.

The Time Has Come

Well its that time of year we all anticipate with mixed excitement and fear- no not the Chocolate Festival- the first day of school. Actually it has gone pretty well the last 2 years. In the first 3 years Dakota was with us he had 3 different schools. Many public schools (we learned the hard way) don't have the resources for children with learning disabilities.

When Dakota first came to us we decided a public school might not have what he needed (e.g. small class size) so we looked at private schools. Unfortunately, private schools don't have to accommodate special needs so most we found didn't. In fact, one local high dollar Catholic school said "We don't take THOSE type of children". I had the most un-Christian impulse to douse her in holy water and say "Careful lady, yours would be the easiest habit I ever kicked" (sorry for the bad pun). 

Now don't think that we were difficult or Dakota was kicked out of those schools (if a school ever asked us to leave it would be because of me not him); it was because of insane policies. His first school had the special ed. programs but it was not in our district and kids in that district get priority. The second school was in our district but the principal had the opposite policy. She let so many kids in (though she thought more about how much money people had than the children) that he was in a K class with 22 other children and it was disastrous. Dakota hated it and we were called in at least once a week.

He is in a good school now in a class of no more than 7 kids and he is doing well- but it took work. We had to insist: we went to the school administration board, we had meetings, Dakota was tested over and over- it wasn't easy. 

I understand that its a tough position for schools with only so much money. And after all, while Dakota is certainly the most important child ;-) he is not the only one. But (here's that but again) writing reports and getting the boxes checked off on your paperwork can't be more important than whether or not Johnny is catching on. I used to go along with what they suggested until I remembered that my kid wasn't as important to them as he was to me. So I learned to say NO: to the red tape, the easy way, the passing of the buck- you name it. No is a powerful word...just ask Dakota, he tries it all the time.

Miss Smarty Pants

This is a hard entry to make because what follows makes me sound shallow. I probably can't deny that because I have never been an introspective person. I've always thought it was pointless: when I discover something bad about myself I probably won't succeed in changing it and if its good I'm afraid I'll mess it up. Better to move along in my insecure ignorance- everybody's happy! But (there's always one isn't there) having a child, especially one with special needs, changes that.

Now I'm stuck dissecting every motive and decision- who makes up these rules? 

As I mentioned in a previous blog I didn't exactly excel at sports (okay be kind people)  but I was born with a quick mind and a good memory - which is all that intelligence really is. Straight A's came easily to me...despite skipping more days of high school than I attended. It has been very hard for me to reconcile being in Mensa -which worships intellect- with my son's problems. Perhaps I have taken too much pride in I.Q. And I know that tests are subjective, not everyone is good at taking them. Dakota's tests put him just a few points above retarded, but when I see him using his great imagination and finding new ways to work around his limitations, I realize intelligence just can't be measured. He's smarter than I am because he never worries about proving it.

Extra-curricular activities= Frustration

When I was a kid no one ever picked me for baseball or volley ball or dodgeball or...you get the picture. My own brothers only took me under the universal threat of "I'm gonna tell". So you can imagine the "popular" kids weren't making UN level deals for me- though I wasn't actually that bad, just short and very nervous. Of course when it was time for the team spelling or geography games the worm turned! (I harbor no bitterness or ill feelings toward the pompous  elitists). 

Now I find it very hard to not want to measure the little urchins in the school yard for choke collars when they leave my son out of their games. He is reaching the age or intellectual capacity when he understands that they are excluding him and that he is different. He will try things at home that he won't do at school like kickball or hitting a tennis ball, though he won't always do it at home either. I think he becomes so self-conscious of not being as good at it and the kids get so impatient with him that he stops trying. We try to get him to practice at home but sometimes he just refuses; and we often get a note from the PE teacher from school that he won't participate. I know he needs to do these things to help his coordination and build his strength but how much heartache and frustration-for all of us- is it worth? 

A "normal" class is not always what he needs and finding someone to teach special needs children sports or music is not that easy- at least not in Oklahoma.We enrolled Dakota in piano lessons a while back. He wanted to do it because his cousin does. It took a while to find someone who would take on a nine year old who couldn't read yet and has learning problems. We finally found someone who was not a special ed. instructor but was nice and would try. At first Dakota seemed to like it; but then it started to get harder. He couldn't understand tempos and beats or focus on learning the names of the notes. Perhaps he was not advanced enough yet. Whatever the reason, when recital time came we decided not to make him go. All the other kids in his age range and/or experience were playing whole songs and we could barely get him through a verse of Twinkle Twinkle. Rightly or wrongly, to save his embarrassment or our own discomfort, we didn't go. We didn't tell him about it so he doesn't realize what happened. This was one of the few times that I was glad Dakota does not always have the ability to understand what is going on. I don't want to teach my son to be a quitter or to care more about what people think than enjoying himself and trying, and I don't think I did; but I hope I didn't give myself permission to do it for him.

V-a-c-a-t-i-o-n...that spells HELP

I have just returned from 4 days of driving vacation fun (spelled he!!) with Dakota, my 15 year old nephew and 2 family friends- boys ages 11 and 16. I am not sure if I should have had a lobotomy before we left or have one now. Do you think its too late? 

Besides the drama of 4 boys wanting to watch 4 different things on one tv, Dakota sleeping with me and alternately kicking me black and blue and throwing up all over the bed, spending 3 days drying out bathing suits and, the utter lack of sleep aids for children; there is the absolute torture of spending 3 nights smelling a room filled with 2 adolescents, 1 pre-pubescent and one vomiting boy. Man, I need medication.

One of the bad parts is worrying about Dakota. Not about the water- though I do worry because he is not a great swimmer- but about whether or not he is lonely. He is afraid of the water rides, or just doesn't like them, so he didn't go with the other kids. He stayed in the lazy river area but was by himself. I felt sad watching him float around talking to himself or his pretend classmates. He occasionally tries to interact with other kids but doesn't know how. He doesn't seem to realize that they don't share his make believe friends or story. Sometimes he tries to copy behavior he sees other kids do to each other as a way of reaching out but he is very awkward about it and he doesn't understand the boundaries other kids have for people they don't know. Its very hard to know when to leave him alone and when to step in and help him. Especially since I was not good at making friends when I was young. I was self-conscious about being poor and uncool, later about being overweight. But he still does it- despite being scared. Maybe he is teaching me as much as I am hopefully teaching him.

Kids say the darndest/most awful things

Today I had to face one of those moments I dread more than almost anything. Kids were teasing Dakota and he got angry and threw his toy- which of course gets him in trouble. I have no idea what they said specifically and he can't - or won't- tell me. I wonder if he won't tell me because he is embarrassed by it or just wants to forget it. What I do know is that it breaks my heart to see him standing off by himself with tears falling down his cheeks. It is difficult enough for people to teach children that sometimes people say mean things; and even though it hurts we know they're just ignorant or scared and we can't let them control how we feel about ourselves. We definitely do not hit. Now, try to explain why kids- and sadly many adults- would say to him "Are you stupid or something". I have seen teachers of his exclude him from playing games  because he "wouldn't get it"(don't worry, that didn't get by- trust me, no one will ever accuse me of being subtle). Dakota loves music and once he told me he wanted to be a music teacher when he got big, just like Mrs. _____ at school. I told her about this to let her know what kind of impression she was making. She shrugged, laughed and said yeah right. It took all I had not to actually slap her face (Have you ever actually slapped someone's face? I think it would be far more shocking and insulting than a punch, and I 'm ashamed to say a little bit satisfying in this case; but then what kind of example would that be to Dakota? Darn this learning by example cr@#!).  I am not sure what parents actually teach kids about how they treat each other on the playground. Its so easy to go along with the crowd and pick on the handicapped ones, or fat ones or shy ones, or gay ones. To some, it is how they get to feel superior or even good about themselves because they feel like so little at home. And as adults they have no idea how to feel good about themselves so they keep on trying to feel better by making others feel worse - I know people like that.  They are sad adults who people talk badly about when they're not around. I guess nothing changes from the name calling we do as children; we just have the "good manners" to do it behind people's backs.

TMI or not enough?

This is a guest post from gouldie - Dakota's other parent.
I have had some reservations about creating a public (we have tens of readers) journal of our life with Dakota. These reservations stem from my constant struggle with whether or not to try to "explain" him to others. Dakota has no physical characteristics that hint to his disabilities. In fact, it is my total unbiased and objective opinion that he is a beautiful child. People who experience only brief encounters with Dakota walk away with the impression that he is a little reserved ... and beautiful.

When it becomes apparent that Dakota is "different" than other kids - that's when I'm never quite sure what to do or say. For instance, there are no indications of Dakota's physical limitations until he tries to run or climb or play sports. Then it's quite obvious that he can't keep pace with his peers. At the park one day when he was about age seven some younger kids (ages 4 or 5) tried to engage him in a game of tag. It only lasted a little while before one of the kids asked why he couldn't "play right." Looking back on it ... I probably shouldn't have stuffed the child in that trash can.

Other kids have asked questions like, "Why can't he talk right?" And adults have asked if English was his first language. I give vague responses. Some along the lines of, "He does the best he can." or "We're getting better every day." But I never know how much information to give. What is fair to him? I suppose I could say, "He has an auditory processing disorder and speech apraxia." Or, "He was never allowed to crawl or try to walk so the neural pathways in his legs didn't develop properly." But then I feel like I am labeling him ... putting him in a box.

Frankly, it's not as difficult now as it was that first year or so when his behavior was more "challenging". When your kid goes from zero to complete meltdown in 2.6 seconds in the grocery store part of you really, really wants to let the people around you know that this behavior is not the result of inept parenting.

Oh ... speaking of grocery stores, a quick diversion. Sometimes you can't just throw the little darling over your shoulder and take him to the car for time out. When Dakota was small he rode (like most little ones do) in that little seat behind the basket. Well, Dakota craves attention more than anything else in the world, so when he started acting out I would tell him that he was in "grocery store time out" and I would spin the cart around and push it backwards so that he couldn't see me (or better yet - he couldn't hit me). It took a few times, but eventually just the threat of "grocery store time out" would settle him.

Okay ... back on topic. I haven't really settled anything here. I"m still not sure how much information, if any, I should provide when others notice Dakota's differences. Any thoughts?

Anger ticks me off

People have said I have a short fuse on occasion [you can't find those people anymore- 'nuff said ;-] ...I'm working on it, GEEZ PEOPLE!  My worst moments- and I hope I am not alone in this- are when I stub my toe or hit my thumb with something; man I think I even curse in several dead languages. Then I get more angry because I'm angry. I know...its a character flaw for which I, unfortunately, have no excuse. One effect of Fetal Alcohol Syndrome is a quick temper which- much like my weight- you have to manage the rest of your life. Dakota can get angry very quickly and interestingly it is the most pronounced when he gets hurt. He also gets angry when he is frustrated by something such as when people don't understand what he is talking about. We have not been able to figure out if he is more angry with himself or the people he is talking to- he can't explain it to us, but he has always been this way. The good news is he is over it very quickly, almost as though it never happened. I remember the first time I met Dakota. His social worker told me about this and said that if you distracted him from his anger or frustration he was over it in a second. Almost on cue he got furious over his blocks falling on his foot and she showed him her sunglasses- shazaam, it was done. I don't know if that part is also true of FAS (maybe some of you know) or an effect of ADD. Whichever it is we are trying to teach him better ways of dealing with it when he gets angry. He has made progress because he doesn't lash out the way he did as a toddler so something is working. Now maybe I can work on myself- perhaps twirling shiny objects in front of my eyes...

Alone again naturally

Dakota was taken from his biological mother when he was around 2; then he lived with a foster family until he came to live with us. While with his- I'll call her bio-mom (though that sounds like the $6 Million Dollar Man or hazardous waste)- he was left alone a lot. She wouldn't take him out of his crib except to feed him for his first 6 months; his first 3 months he was on his back in his crib so much that there was an indention in his head that took a long time to go away. After this great beginning he lived in a car for a while. Naturally he did not develop physically, neurologically or socially. One of many consequences of that is Dakota does not like to be alone. For the first three years we had him it was like living with Elvis (the later Elvis when he started taking drugs and Little Debbie snack cakes): if he was awake, everybody was going to be awake; if he was in a room, everybody needed to be in the same room. He is able to spend short periods by himself now but he doesn't like it much. Bed time continues to be a difficult time though not as traumatic for him- but still frustrating for us. He does not like to sleep because that means he will be alone so though we start the going to bed process at 8:30, he is still awake at 10:00 calling down to see if we're awake or ask "Can I tell you something" questions. Every night its the same fight to put him to bed, read a story, lay with him a minute then leave him there knowing in a few minutes he'll be up saying he's scared or can't sleep. And when he does fall asleep, somewhere in the night he is downstairs coming in to sleep with us, which means someone is off to the couch or to sleep in his bed instead of him. I haven't had a full night's sleep in my own bed in years...of course he sleeps like a baby! We try to remind ourselves why he does this and we take turns with the night time ritual but it can be very tiring- well for everybody but him apparently. The concept of "alone time" is lost on Dakota- I guess he had enough of that. 

Stay just a little bit longer

When Dakota came to live with us he was 3 and I was 43. That was 6 years ago-if you do the math the answer is now he's 9 and I'm... tired all the time. We knew he had what they then referred to as "developmental delays". Though I scratched my head and wondered if the person who comes up with these names is a traffic reporter, I figured I understood what it meant: He would be a little later in potty training; he would start kindergarten a year or two past the other kids; maybe even that (God willing) puberty would be delayed, thus pushing it past when I would enter menopause so one of us wouldn't have to die from that dangerous combination. As time went on I began to realize "developmental delay" meant only that they didn't have a category for the havoc and wreckage his biological mother's prenatal drinking and drugs left behind in this fragile little boy's brain. It was a clinical way of saying 'we have no idea what you should expect'- which in the end, I believe, is true for whatever they call the affliction a child with special needs has. There is no word or description to convey that this means years of constant working on the basics of life like dressing and eating, plus the extra work to learn the alphabet or colors or where you live. Dakota can tell you he lives in Oklahoma but not his address or birthday or spell my name. I cannot tell you how hard it was to let him go somewhere with others knowing he could not tell someone who he was or where he lived. He knows my phone number now and if he goes slowly he can spell his last name, so my anxiety is much less. We just try to make a game of repeating our address hoping someday it will click and fearing it never will. No one can tell us how far Dakota will ever progress, so every time he learns something new we wonder if this is as far as he will ever get. Will he have the mental capacity of a 5 year old forever or will he make it to 12 or 15 or 20? One thing's for sure: Dakota is going to be at home a long time...and we'll be there for him always.

Won't you be my neighbor

I know you've heard "It takes a village to raise a child" which may or may not be true, but it certainly takes a neighborhood to keep them busy! I have the best neighbors in the world for this; in fact rather than move to a bigger house when we got Dakota, we added a second floor to the one we had so we could stay in the same neighborhood.  You can always find a good house but you can't buy great neighbors- though you can rent mine if you're desperate! From the minute Dakota came to our street he has been treated like a prince. They accept his limitations but at the same time try not to treat him differently. Thats an important distinction and not always easy for people to do even though they want to. We have a neighbor named Christie who Dakota adores. From the first time they met he tried to be like her and dress like her and Christie took it all in stride. In fact too far- she brings him stuff thats like hers or matches...its like a little Christie mini-me. She even bought him little OU clothes- the dog! I bring all this up to say that Christie epitomizes what I think all people with disabilities and their families want from everybody else- acceptance. She doesn't treat him like an idiot but she doesn't demand the world of him either. She just lets him be what he is and is happy with that- and she calls him a goof ball when he has it coming. What a neighbor.

Hot town summer in the city

Summer is a mixed blessing for me. There's a break from the run around routine in the morning to get Dakota ready for school; but, there's the problem of making sure that he doesn't lose any progress he's made during the school year. Homework during the school year is bad enough: when will he be able to focus best, keeping some kind of structured schedule for him so that he knows what to expect in what order at what time of day, when will I have the most patience so I can keep pulling him back to what he is supposed to be doing and on and on. Now don't get me wrong I understand the ADD thing- I have the attention span of wheat toast most of the time  *Note- here is where I insert the usual disclaimer: I love my child and would not trade or change him for the world...* but a child with fetal alcohol syndrome, ADHD, auditory processing difficulties, etc can sometimes make you wish there was a stress patch like the one for nicotine (I think they used to call those mother's little helpers).  We have to continuously search for new mediums that will help him learn. He writes the words on dry erase; constructs them out of syllable cards we make for the words; we have had him write them out with his finger in a pile of sugar or flour on a tray so he could have the tactile sense of the word to help him remember; his tutor made little phone looking things out of pvc so he could hear himself when he says the words or spells them. And all of these work but there's a lot for him to do there; its frustrating for all of us. Its often very hard to know how hard to push him- what can he truly not do and what does he just not want to do, and of course its summer and he has better things to do! To make things worse its 105 degrees here and my patience level goes down as the temp goes up. It's a cruel,cruel summer.

Well it was just his imagination...

Dakota has -among other things- an auditory processing problem. This means what he hears doesn't make it to his brain without being scrambled; which means he cannot repeat it back to you the same way he or you heard it (of course the same can be said about almost all the politicians in Oklahoma). One of the ways this manifests itself is that he cannot process words of more than two syllables very well, more than three - forget it. Fortunately he has a great imagination and, like most kids with disabilites he makes ways for himself to adapt. For example, he has always been fascinated with lightning and electricity but has never been able to say 'e-lec-tri-ci-ty' (5 whole syllables). But he associates it with lights so he calls it 'lightricity'. You can also see him trying to compensate when you say something he doesn't understand - either the words or the concept. He will repeat what you said but not out loud. He will form the last 3 or 4 words as he tries to slow down what you said and run it a second time for his brain. For awhile every time we went somewhere he would bring his slippers. I aksed him about this- and the following is absolutely verbatim: "Why do you always bring your slippers? They're my case shoes. Your case shoes? Yes, case something happens to my nuther ones." Who's on first?

What do I want for him

I have heard almost everyone I know who has children say some variation of the following: "I just hope my kid can get into college and get a good job." Not an unreasonable goal. If your child has special needs your desires are much simpler- I just want my kid to be able to take care of himself and be a good person. Now you may ask why I didn't include "be happy" in there. First, its been my experience that most kids with disabilities are pretty happy- they don't know they shouldn't be. Second, if Dakota can do the first two, I think being happy will take care of itself (not bad advice for me either). I must admit lately I worry about him being able to take care of himself. For some reason he has become fascinated with America's Funniest Videos- and there are very rarely any people on there who have the sense not to try to eat rocks! I mean the tag line for the show is basically "Here- hold my beer I wanna try somethin".

Other people worry about their kids getting their license, or getting on the little league team or in the band. I just worry about what will happen to Dakota if I die. And thats not because I don't have an ego or I'm a deeper person -and I know other people worry about it too. Its because I-and other parents of children with special needs-have to worry about it. Because its not as easy as knowing your parents or a close friend will take your child if/when you die. Who has the time, the resources, the patience, the commitment - the amount of love for your child it requires to take on the task of a child with disabilities? I worry about it every day and it scares me just as much every day.

A "disorder" by any other name

For some reason we are all obsessed with labels. We feel better about something if we can give it a name- it seems more important. I mean, don't you feel less guilty about feeling awful if the doctor calls it something? "Oh yes, you have 'Who the heck knows fever- very bad." Well then your boss says to stay home and your friends/family pour on the soup and sympathy for the "poor thing". And how embarrassing would it be for my family if I died of nothing. I can hear the whispers now "Who dies of nothing? What the heck kind of freak was she?" Its not any different for a diagnosis of kids with disabilities. At first we want to know because we wonder if its our fault; then we want a name because if it has a name then surely someone can fix it; then we need the label so we know what to expect; and finally if we call it some disorder or syndrome people will understand why my kid acts the way he does and its not just bad parenting or that my child is stupid. It takes a long time to get past that last one- I'm not fully there yet. I'm learning that I don't have to explain or excuse him- he re-teaches me that everyday. He just lives and he doesn't know the names of these disabilities or most of what he sees in the world- heck he can only master basic two syllable words at this point. And you know what? That hasn't slowed down his enjoyment of life one bit.

Can I tell you something?

Hello all. This is the start of my blog story about raising a child with special needs. Dakota is my son and he came to live with us six years ago. We've been told alternately he has Fetal Alcohol Syndrome, Autism Spectrum Disorder, brain damage or that he's plain old mentally retarded. Dakota is nine and believe me having special needs doesn't make him any less nine! Well, actually at this point he's about as developed mentally and socially as a 5 year old. Which means he wants to make you laugh all the time and so if he does something once and you laugh then he should do it again and you'll still laugh...and he should do it for the 755th time in a row and you should still laugh. Ever hear a child when they first start to tell Knock Knock jokes? First its the same one 25 times..Knock, Knock? Who's there? Boo. Boo Who? You don't have to cry about it (hysterical laughter)...Knock, Knock, etc. (just as hysterical laughter)...Knock, Knock (hysterical laughter followed by the sound of my head hitting the wall repeatedly followed by hysterical laughter). Then they make up knock knocks with no sense "Knock, knock. Who's there? Table. Table who? Table and a blue chair" (hysterical laughter followed by the unstopping of a wine bottle- you figure out which of us is doing what). Now throw in Dakota's need to be noticed and his compulsive behavior and you can imagine that some days you reach a point where the actual sound of knocking makes you run screaming into the street! The really funny/ironic part of that is that when Dakota first came to live with us- we adopted him when he was three- he could barely speak and we wondered/prayed/dreamed that someday he could make words and sentences; now we wonder when he will stop talking! His absolute favorite sentence is "Can I tell you something?".  I have learned that though it may seem best to answer no, it makes no difference. His question is more like an intro rather than asking permission. But I've also learned that HE's learning compassion, patience and selflessness from me whether I like it or not.  Can I tell you something? Raising Dakota is hard work.