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?