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.