Sunday, December 28, 2008

Secret Abilities

Just when you think you know someone? That's when they surprise you. Right? One of Daniel's loves is letters and words. Which is ironic because his comprehension of words is very very below grade level. Let's say about 2nd grade when he is a 6th grader. He can read above grade level. He just doesn't understand it.

When he was little, I mean like 1, 2 and 3. It was just he and I staying home. Zachary wasn't born until after Daniel was 3, so we had a LOT of time together. He didn't really watch much TV then believe it or not. I pretty much stuck to the 1 hour a day. That changed when I was pregnant with Zachary and was on partial bed rest! How do you get a three year old to sit still? Popping in a movie was all I could do to keep him in one place. He also RESPONDED to the videos, and really he didn't respond to much else. It was nice to see him excited about something. So that is my TV excuse!

Before this time, I remember doing Playdoh often. He wouldn't want to touch it, but we had a set that you could make letters. I would make Play Doh letters forever and we'd line them up. Saying the alphabet over and over. He loved that. He had letters that stuck on the wall in the bathtub. He LOVED those. He would spell out words over and over. At age four. When we were driving around town he would read the signs. All the time. At age 3 and 4. It seemed he could always read. He loved putting videos on closed caption so he could read it as it was on the screen instead of just listening. I think it helped him process it better. But he loved/loves to watch those words go across the screen. He also loves computer games that have stories and words on them. It's one of his "things". We know this. It's not a gift or anything. It excites him. One of the many computer games he has that he likes has a poem on it. He quotes it every so often, as he is very echoalic.
The New Kids on the Block:
I spied my shadow slinking

up behind me in the night,

I issued it a challenge,

and we started in to fight.

I wrestled with that shadow,

but it wasn't any fun,

I tried my very hardest-

all the same, my shadow won.

by Jack Prelutsky

I've heard this many times. What I haven't heard many times is the other day we were eating dinner at our kitchen table. Daniel was eating his usual Brat. (I know they are awful for you but it's all he'll eat) Daniel says, "won". "shadow", "my". Zachary looks at me and says, "mom, why is Daniel saying random words". While he is often quoting things, they are usually echoing a book or a movie so it at least makes sense. I looked at Daniel and I could tell he was thinking about something, rather intently while he was continuing, "same", "the", "all". The words were sort of swirling around in my head as familiar, but not really. I looked at Todd and the realization hit us both at the same time. Daniel kept continuing. "Daniel, are you saying something backwards?" I asked.

Daniel stopped and said, "Yes, mom, the New Kids on the Block by Jack Prelutsky". And then he picked up where he left off.

I looked at Zachary and said, "you know that poem Daniel says about the shadow, he is saying it backwards." Zachary had the same reaction Todd and I did in that his eyebrows rose up and we just sat there listening. It was quiet except for the words from the poem. In my opinion, it was eerie. How can he do this? I have heard him do the alphabet backwards before, and he is WAY better at that than most people who attempt it. He can start at any point and go backwards. It's quite amazing. But this was really something altogether different. The brain just doesn't work that way. Well, at least our brains. There is no doubt his brain is wired different than ours. Go ahead. Try to say something you know by rote, backwards. I would be interested to hear from you if you can do it. Or if you know of anyone else on the spectrum with this ability. It is new to me. There isn't often things that are new to me. While we were listening Todd and I were staring across at each other not speaking. Once Zachary learned what he was doing he was laughing. Laughing like, this is unbelievable, laughing. "Daniel, that was awesome, can you do that again?" Zachary said.

Daniel said, "no, I don't want to, that was kind of hard." Kind of hard? Impossible? Apparently not? Amazing, yes. It makes me wonder. . . is this something he does often and doesn't verbalize it? Is this a skill that is usable in some way? What other possibilities does this open up for his brain? Can I please please crawl in there and following those pathways and connections and see how you are wired, Magic School Bus style? I'm dying to know. Daniel you are quite a kid. You never cease to amaze me. I can't wait to find out more of your secrets, abilities and desires. Thanks for the glimpse at what's going on in there.

Wednesday, December 24, 2008

Oh there it is!

Yesterday we went out for haircuts for the boys. Haircuts have had a very long standing history of being a nightmare. But in the past year or so that has leveled off and become o.k. Zachary of course has no problem. Daniel has always hated it. Let me say that the kid has more hair than any other person on the planet and it is THICK. It is like straw thick. I have seen many kids on the spectrum with this hair. No one else has this hair in our family, and since your hair can be a good determination of your health, it makes me wonder if any scientists have ever looked into this?

Anyway. I always did Daniel's haircuts here for the simple reason that it was horrible. He yelled, cried and carried on. I would put him in front of the TV on a giant sheet to catch the hair, and do my very best to cut WITH SCISSORS ONLY. This is not an easy thing. I'll admit when he was young (3 or 4) we used to hold him down and buzz him with clippers as fast as possible. It was horrible and traumatic for ALL. Apparently so traumatic that he has a terrible aversion to clippers. So I would cut it myself at home on the sheet. It usually took me over an hour with breaks and stopping and starting and crying. I would have to work myself up emotionally for weeks before I would start all of this. It was hard for me, and for him.

Eventually I felt he was ready for the big time. Kari, my wonderful wonderful stylist said bring him in here. So I did. It was rocky at first. But not terrible. She was willing to keep trying and so was I. I could just try to relax him instead of try to relax him AND be holding very sharp objects at the same time. This was way better. We kept working on it and she would talk him through it the whole time. Zachary would come to and so Daniel would see Zachary being brave. That helped. THEN Todd started going with them and all three would get their haircut at the same time. THIS was even better. I had to do nothing! That hardly ever happens!! Oh glorious glorious days.

Then Kari had to go and get married and then get pregnant. I mean really, the nerve of her?! :) Taking 12 weeks off to tend to the child she gave birth to. That really has messed up MY schedule! And over Christmas too? Goodness.

Yesterday was our second cut with the replacement. She is a very sweet girl. But she doesn't know how to talk to Daniel. I had gotten a bit complacent. I see that now. We sort of strolled in there and usually it's 15 minutes and out. Zachary's hair was cut too short for his liking last time, so we just did a "clean up" job along the back bottom and around the ears. Then Daniel's up and his hair was quite long. Like I said, he has quite a head of hair. She was commenting on it. You really have to be like a cheerleader to get him through. Always positive, rah rah rah, we are almost done. Then the replacement says. "Wow you have so much hair. This is going to take a lot longer than your brother." Daniel says, "is it going to take long?" Replacement says, "yes it's going to take longer and longer." one two three "SCREEEEEEEEEEAMMM. NO IT'S NOT GOING TO TAKE LONG!" Zachary looks at me and says,"can I go to the bathroom?" This is code for I'm dying inside and I must go and hide please. Yes, go I say. Meanwhile I try to calm down Daniel. We get through it, but he is UNHAPPY. He is his red blotchy self. The salon got mysteriously quiet. We need to GO. He was mad for 3 hours after that. Partially due to the internet going in and out, the fact that it was snowing, Christmas is almost here. Lots of reasons.

But what I realized is that this is what people don't get. Things look under control. It appears that he is dealing well with everything. And in some ways he is. But in a lot of situations those of us around him have been trained in how to get him through things. He has showed us how to help him deal with difficult situations. It is wonderful. He is able to do that. Kari had learned what he needed to get him through the haircut. The school has learned how to get him through the day. We have all learned and it helps him deal with his surroundings. When something is taken out of the equation you get to see what was lurking there under the surface and I think, Oh, there it is. I knew that autism was there waiting, threatening, looming. We've learned how to keep the monster pacified. But occasionally it comes and takes poor Daniel. It makes him sad he couldn't deal, even though he's done nothing wrong. It takes over and he can't get back. It makes me realize how volatile our little world can be. It jerks me back to full alert again. Sorry I wasn't there yesterday Daniel. Sorry you got upset. Thinking you'd be in the chair for how long? What did you think a long time was? A few days? A few hours. When she meant more than 2 minutes?

As you just said to me. You look very handsome. Let's put it behind us and enjoy our Christmas. Next time, Kari will be back and we can get back to the routine. Merry Christmas Daniel.

Monday, December 22, 2008

The Diagnosis

Last night I was thinking about October 2000, Daniel's 4 year visit to the new pediatrician I don't know why. Sometimes it just comes back to me. I got out of bed and wrote this. I've been holding it in my drafts not sure if I should put it out there. It didn't seem a very Christmasy thing to write. It was almost Daniel's fourth birthday when he was diagnosed with autism. It was together one of the worst and best days of my life. Worst for the obvious. Best because it gave me answers and strategies and the people to help us figure out this thing called autism.

The day before. An argument. Who has and hasn't done what. The anxiety of not knowing what's going on with our child. Anxious to see the new Dr. the next day. Words were exchanged. Not knowing who else to blame.

In bed that night I said a prayer.
It was simple, "God, please don't let it be autism".

People think I don't know. They think denial is weighing me down. They think they see it and I don't. I've spent 3 years, 24 hours a day with Daniel. I knew there was something. I thought I didn't know what. Do they really think I don't know?

God, please don't let it be autism

I'd found avenues to break through with him. I know it can be done. Why can nobody else see it? See him?

God, please don't let it be autism

The Dr's office. Daniel is scared. It's a new place. He is screaming. Confused. It's a bad day. Laying on the floor of the office screaming. Red with anger and overload. Screaming, kicking, screaming. We just let him be.

God, please don't let it be autism

The nurse, asking questions, does he do this? No. Can he do that? No. Concern on her face. Her face is etched in my mind forever. The face of a person who may finally say it.

God, please don't let it be autism

The Dr. has the look of someone about to share something huge. He is struggling. He is upset. He finally says it. I think Daniel has autism. The words hang in the air.

Is Daniel still screaming? I can't hear him if he is. The room becomes an empty barrier. I sit there. Silent. I can hear my husband softly crying. I've hardly heard that before. I can see the pain on the Dr's face. The nurse is still there. She is watching me. I'm not moving. Not talking. Not crying. She takes my silence as bravery. It is not.

God, why is it autism?

Wednesday, December 17, 2008

'Tis the Season

I have been thinking about something for 3 days now. I would like to preface this with, I am not saying this to congratulate myself. I just think it is sort of strange. Strange in a wonderful and positive way. Strange in a way that makes me feel good, so I want to tell other people. Strange in a way that makes me want to tell others so that they know there are good people out there.

I will also say that we live in a wonderful community. A community that cares about people. A fairly bleeding heart community, yes. We are right across the street from a major university and with that brings a certain "kind" of person. But here I am going to use kind in the descriptive way, of just being kind. I talk to many families who have children with disabilities. Sometimes I don't even know them and they call me looking for help and advice. I always listen. I try to help the best I can. I'm sort of a bleeding heart myself and I want to help everyone. I feel I've gathered a lot of knowledge of autism and of working "the system". I have been very successful with our school system and feel we have a great working relationship. I'm nice, yet firm and I really don't take any shit. But in a very perky and upbeat way! (Most of the time) Daniel has thrived. He is doing well. I want more. But I am happy with his progress.

What I often find talking to these other families is that everyone has stories about strangers. Strangers who have yelled at them to control their children. Strangers who tell them they are "doing it wrong". Really awful situations that break my heart. I think one of the challenging things about a child with autism is that they, to the untrained eye, look "normal", whatever that means, but they don't act that way. They have meltdowns. They are way behind developmentally and therefore don't live up to people's expectations. Then for some crazy ass reason, strangers feel compelled to tell you what they think you are doing wrong. I know I know. This is not something that happens only to families with autism. But I'm saying, it seems to happen more often and with a lot more, ahem, gusto from the people giving the advice. I hear it all the time.

Now you are probably thinking I'm going to tell a story about some crazy person who confronted me. Well I'm not. I'm here to say that THIS HAS NEVER HAPPENED TO ME. Never. Don't get me wrong, I'm sure people think things on occasion. But no one has ever said anything but positive things to me. I don't know if they are unsure what my reaction would be? If they somehow sense I'd give them a piece of my mind right back (in a perky upbeat way of course) or what it is. The reason I bring this up is it happened again on Sunday. I was bringing Daniel to his usual Sunday swim at our local community center. Our Sunday swim is his reward for doing a good job during the previous week at school. In over 3 years he has missed twice. Twice that he acted in an aggressive manner and lost his privilege. Amazing. So we are checking in on Sunday. I always bring a book and sit in the bleachers and read. The man at the desk asked me what I was reading. He does this whenever he sees I've moved on to a different book. Our time at the counter was longer because I was due to buy a different pass. I told him I'm reading "Ray". It's about an autistic savant, who is blind, and a musical genius. My friend is the president of a publishing company and sent it to me. (It's wonderful by the way). The man at the counter commented on the book. I told Daniel he could head to the locker room to change. When Daniel left I said, "You know, Daniel is autistic too." He said, "really? I wouldn't have known that. He does really well. It's because he has such great parents." I mean what a totally unnecessary and kind thing to say! This guy sees either my husband or myself bring in Daniel every week to swim and has been observing us for a long time now. What a way to make someones day.

A few months ago I was walking home after walking Daniel to school. A neighbor drove by and stopped her car and yelled out the window, "you are a wonderful mother." Again. There was no reason for that. Kindness. I honestly have many stories like this. But the one that sticks out to me the most was when Daniel was, I'd say 5. That puts Zachary at 2. We were in the post office. I don't remember the circumstances, but I knew Daniel was wearing thin. I abandoned ship and started to hustle them both out. Daniel lost it before we got to the door and I was DRAGGING him out of there. He made his legs go to spaghetti and wouldn't walk. At 5 he was BIG and I was dragging him to the car and trying to avoid kicks, punches and head butts while he is screaming at the TOP of his lungs. I was sweating and struggling, while trying to keep my 2 year old close to me and not running into the parking lot! I was on the verge of tears, seeing that van across the lot and trying to get him there. Everyone is staring. At this point I'm just trying to get out. A man was walking into the post office and looked at me. We made eye contact and I thought, here it comes. You know what he said? He said, "you are doing a great job, hang in there." and just kept walking. I was dumbfounded. And I will never EVER forget it. Those words gave me the strength to get across the lot and get everyone strapped into their seats. (while still avoiding punches and head butts and kicks) I think about those words on hard days. A stranger. A kind stranger, who impacted my life by saying one sentence to me. Who locked eyes with me in a way that told me it would be o.k. He did it not for himself, but for me, because he knew I needed it at that moment.

I try to pass on the kindness when I see people in stores with their 3 year old screaming. To people when they call me, a stranger, out of nowhere. Next time you see someone having a "moment". Don't judge them. Encourage them. You just might be that person they never forget. 'Tis the season for love, joy and kindness. Let's spread it throughout the year.

Monday, December 15, 2008

Oh Well

I am again off of the band thing. But the most amazing thing happened this morning that I felt the need to share. Let me start by saying we are very very routined around here. Daniel, with his autism, likes his routines. The good thing is that once you get him into a routine he'll always do it. Always. He gets up, eats breakfast, plays on the computer, brushes his teeth, goes to his room, gets totally undressed and gets back in bed for 5 minutes (I really don't know how this started but he does it every day!) gets up, gets dressed, makes his bed, watches tv for about 10 minutes and we go to school. Every day. Even on the weekend. Except the school part of course!

It's great that he always brushes his teeth and makes his bed. Changing that routine or adding to it can be a bit of a nightmare, but once you do it. He'll do everything. It has been so nice that he makes his bed everyday and takes responsibility for some things. He is growing up and it's as it should be. He even keeps me in order. On Fridays he brings home his water bottle that he keeps at school all week so I can wash it. Then Monday a.m. he is asking, "did you wash my water bottle?" "Is it in my back pack?" He keeps you on task. It's awesome. The problem can also be when things go wrong with the routine he can get quite upset. The AI (autistic impaired) consultant for the district suggested I make up a "hurry up" schedule. For that day that will eventually come when we all over sleep and he has to have a routine done very quickly. She suggested we practice it on the weekend on a day when it doesn't really matter. This is a good idea. Write it out and practice it and then when it happens you are prepared. No, it's a great idea. A great idea that I haven't done yet, because, well, it will be a nightmare. I know this. But I know it will be worth it. I may even get around to doing it someday!?

If he leaves a library book at home or a water bottle or something he gets rather agitated at school. Even though he is really good at reminding me it still happens occasionally. They usually end up calling me and I bring it in, so he can refocus. Although sometimes I am doing something and I make him wait. Sometimes I just make him wait because it's good for him. This is partially to get him used to not getting it instantaneously. I may say, I'll have it there before lunch. And I will. Now this is usually good enough for him, because he trusts that I will. It is very important to do what you say your going to do. It is teaching him some flexibility. Very very slowly. But I can see it happening over time. We work on in constantly in little ways.

Last week he got in my car after school. He always wears an ear band in the winter instead of a hat. He doesn't like the hat on top of his head so he'd never wear one. Last year I finally got the brilliant idea to get one of the bands. It covers his ears but leaves the top of his head open. It was a good move. So he gets in the car. I pull out of the driveway and I say, "where's your ear band?" He immediately swung into deep panic mode. Turned blotchy red, starts whimpering. It is a state between crying and not. I hate to say it, but the whimpering drives me nuts. He's in a panic. "Go back go back!" he's screaming. I calmly said I have to go up to the next block and turn around, but he really could just leave it there until the next day. He wouldn't need it tonight. "no no no, go back". I say, "are you sure? we could just go home and you can get it in the morning. This confuses him and he screams, "I DON'T KNOW WHAT TO DO" at me. I do, we are going back. We get to school, go through his locker. It isn't there. I asked if he even wore it today and he yells, "NO, LET'S GO HOME!" Goodness. He was quite the mess. But when we got home it was here in the basket that it's kept in. I used it as a teaching moment and explained that he doesn't have to get that upset. It was right here. And even if it was lost, we could get a new one. It's not a big deal. I know it SEEMS like it to him. (I don't want to minimize his feelings) but really it could be taken care of either way. That was the end.

So today he does his whole routine. Then I get a call that his para is out sick. I have arranged via Daniel's IEP to have them call me BEFORE WE GO TO SCHOOL so I can prepare him in advance. It makes a HUGE difference. If he doesn't know before he gets there he can get quite upset upon arrival and seeing someone else there waiting for him. It's a jolt that takes him a while to get over. This preparation time before he gets there gives him time to process it and he is pretty ok with it at that point. Then we can't find the darn ear band again. I'm thinking oh no, now he's going to be all upset about this on top of his para being out. We look in the basket, on the floor of the closet, in the laundry room. No ear band. And do you know what he says to me. "Oh well, it happens." And walks out the door and gets in the car. That was it. Totally calm, no big deal. Like he just rolls with the punches on a regular basis or something!? It was truly amazing. What a wonderful thing for him to realize. Oh well.

Friday, December 12, 2008

What's the price?

I interrupt this band series for an announcement of something that I never thought would happen. Today I did something I swore I'd never do. I went to Walmart. For those of you who don't realize this. I despise Walmart, so please excuse me while I go on a rant. . . Until today I have never set foot in a Walmart. How can I not like it if I've never tried it? Since it's not food, it's easy. It's a business and plain and simple, I don't like their practices. I have read a lot about Walmart. Probably more than is actually considered sane. I think that they sort of signify some problems we have here in America. We want something for nothing. We value a good deal for ourselves, without thinking of consequences. We want to buy a house when we don't even have a job. Not only that but a new house with granite counter tops and a pool. Then if we can't pay for it, we'll just walk away and let someone else figure it all out.

In the arena of wanting something for nothing. Walmart claims they are, "Always saving you money", "low prices everyday". But I ask, at what price? What does this really cost us? Their products are cheap. Cheap in that lawnmowers are made to last 2 years. Then what? We toss them into a landfill and go buy another one? Clothes. . . don't even get me started. Where are they are made? Not here in the USA. It's shipping jobs overseas. Who makes them? How are these people being treated? How old are they? The questions go on and on. They bully vendors. If they aren't selling at Walmart can they be successful? They expanded their businesses by moving into small towns and left in their wake closed down mom and pop stores with for sale signs in the window. They lower prices in these new areas to put the stores out of business then slowly raise them back up. OK make me stop!
So why did you go there you ask? What caused this trip into the evil empire? Well. I'm shopping for a family who attends one of my children's school. It's a family who is considered "needy" and is getting help from our school community. It is one of my favorite things to do during the holidays. It is one of the few things that make it feel like a holiday of giving. I donate money and usually shop for one or two kids. This should help my case with my 8 year old who asked me last week, "why don't you give to charities?" Answer, "we do but we don't necessarily consult with you"! This year I have two kids that I'm shopping for. One of them asked for a particular kind of Lego set. I can't find one. After going to every store I could think of, I realized Walmart was the only one I hadn't been to yet. I thought they might have one. So I swallowed my pride and went in. I figured this kid's happiness was worth more than my ideals regarding a store, just this once. It ends up they didn't have what I was looking for. I'm afraid NO ONE has what I'm looking for. This kid asked for two things that aren't necessities such as socks and clothing. Two things. I can't find either one. One was a book. How awesome is that? And the book's release date has been backed up to January. I mean come on??? The other the Lego set. Where is the justice?

But back to Walmart. It was BUSY. Apparently not everyone shares my ideals? Obviously, or it wouldn't be such a giant. I know there are lots of people who share my feelings. But standing in the middle of the store it didn't feel like it. I did, however, get a huge amount of satisfaction finding out that the Lego set we bought for my 8 year old was there and it was $12 more than Target's sale price this week. $3 more than Target's regular price. Let me repeat that $12 more than Target. Another Lego set that was on sale this week at Meijer for $35.00, was $52.00 at Walmart. For those of you who need help, that is a difference of $17.00. I can't tell you how happy that made me. Apparently, Walmart doesn't always save you money? Those are the only products I looked at today, and that was my finding. I wonder what other "deals" are out there?

So here I am. Feeling stuck. I know I'll figure something out and hopefully it will be a good Christmas for this family. Plus I received the gift of knowing that, in fact, Walmart isn't always the best price. You can shop at other companies, who have much better track records AND save money. Now that's America.

Wednesday, December 10, 2008

Band Part II

Daniel has decided he is playing the baritone in band. Now what? I thought it may be best to see if I could get him started on lessons during the summer, before school started. Then his "adjustment period" just might be done by the time school starts. So I start asking everyone if they know of anyone who happens to a.) be able to teach the baritone, of all instruments, and b.) has any experience with an autistic boy who is very large for his age and has a tendency to get upset, especially while learning something new!? It sounds like a stretch, I know. Believe it or not I found someone.

Jennifer, God love her, is trained in music therapy and not only had she taught at least 2 boys on the spectrum (who both happened to have chosen the baritone also, how weird is THAT) but has a child with special needs of her own. My gift from God. Maybe this karma thing isn't so bad after all??

The next step is going to a local music store and looking into renting a baritone. $55/month. They will repair, cover damage etc. The thing costs a couple thousand dollars, and eventually you can end up owning it. (after several years of paying $55/month. . . I'm still paying) I signed in all the places and brought home a shiny brand new baritone. Big and bright and HEAVY and full of possibilities and dreams. Although, I know better than to get my hopes up. I believe I have trained myself to not think ahead about the possibilities. Especially at the very beginning of something. But really, how thrilling would it be if he could actually DO this? It could be a group he would be a part of. Something that is his, that he LOVES. I wasn't sure if that would ever happen. That is one of the sad things about raising a child with special needs. You want them to have something, and love it. It's hard to do. I immediately got over the fact that it was band. Never mind the fact that I have never played an instrument. And that usually teaching him something means you have to know how to help him?? hmmmmm

We signed up for lessons with Jennifer. I'll say it again. God bless this woman. I am going to guess that we went through 6 lessons at her house, where the majority of the time Daniel cried and yelled. It was NOT pretty. Not surprising either. It was beginning to remind me of when he was 5 and we tried music therapy. Same thing. Yelling screaming. We quit that. We may be the only people who ever flunked out of music therapy.

I quickly learned that, as usual, he had a vision of his lessons, that I didn't know about. And this was not it. At the first lesson he said, "where are all the other kids?" I reply, "These are private lessons Daniel, once school starts your classmates will be with you." Cry cry, yell yell. Spit. Apparently, I hadn't prepped him enough in what this would look like? Duh. But honestly, I didn't know either. The next week he says, "where is the Veggie Tales song?" Um, what? "Veggie Tales, we need to play the Veggie Tales theme song". Um, ok?! (I seriously need some sort of mind reading devise. . . can I google that?) So Jennifer the good ran around and found, for the next time a Veggie Tales CD and borrowed it from her neighbor. In the mean time, cry cry, yell, yell. Spit. From then on Veggie Tales our warm up at the beginning of every class. He would play along to the Veggie Tales CD and sing at the top of his lungs when he wasn't playing. Which by the way, one of the vegetables in this religious cartoon plays the, you guessed it, THE TUBA. Ahhh. It's all beginning to make sense. If only he could explain this ahead of time. But his language isn't that great and he can't always put into words what he's seeing in his head. So I guess and I bob and I weave like a boxer until I finally land a punch! By the 3rd lesson I realized we needed a visual schedule for the lesson. Why I hadn't thought of this before we started I don't know. We had already got to the point where we could get through about 15 min of a 30 min lesson with him actually doing something, the last 15 min of yelling and crying. (and of course I'm paying for private lessons each of these times) It is very very tough to watch. I didn't know what else to do. I try to get him through it each lesson. I would leave her house exhausted and beaten down (emotionally) I'm thinking, are we doing the wrong thing? Should we stop or press on? Maybe he's not ready?

I sit through the next 3 lessons. During this 6th lesson he was crying and yelling and I clearly remember sitting on Jennifer's couch and thinking. "I'm never coming back here again. I can't do this anymore. I'm about to have a break down. Each time he gets so worked up and upset and then we go home and he's still upset. I can't do this anymore. If Todd wants him to continue, he'll have to take him." But I know Todd won't be able to watch this. It's a nightmare. But once I thought all of that. I relaxed and was at peace and I was happy because I was sure that I would never ever do this again. I was elated thinking this was it. I'm done!!! I could bring back the damn baritone and write it off as, been there done that. So we left the lesson that day. Daniel and I got in the car and I said, "Daniel, I will not bring you to the lessons to listen to you cry and yell. We aren't coming back again. We are done with this. No more." He said, "no no no no, please please please, I want to come back". I finally gave in and said, "ok one more time, if it's like this again, we are done." He knows me. If I say one more time. I mean it. And as Daniel's usual process goes, he waits until I am one step from losing it and he pulls it together. He went to the next lesson, did his visual chart, no crying, no yelling. Just playing the baritone. Amazing.

So it's August, we have a few weeks before school starts and we are actually making progress. We color code all of his music. I go through the music and write what note it is above the note, C, B flat, D etc. Then we have a color. D's are red, C's are green, B flats are orange. I have this memorized. As of this day, I have color coded a LOT of music. He knows the notes, but I think it helps him process it faster while he's playing.

School is about to start. Jennifer says he is progressing faster than anyone she's ever taught on the autistic spectrum. This actually might work out after all. It takes me being on the verge of a break down and telling him I'm done for him to pull it together. But he wants it. He wants it bad. He will dig deep and find a way to make it happen. He's an amazing kid. Who is making his own dreams come true while dragging me along kicking and screaming with him!

Tuesday, December 9, 2008

I'm going to be in band PART 1

I know, not another series right?!? I'm sorry! I promise, it won't go as long as the last one!

I'll admit it. I was always one of the people who made fun of the marching band. If you were a band geek, I mean member, I'm sorry in advance. They seemed to be a very tight knit group, sort of on their own. I never understood marching band. I never had any interest in playing an instrument, my parents never brought it up. They never really ever suggested I do anything, except stay out of trouble and I didn't do a very good job at that! Band was bad enough, but marching band? Why? Just to really sound like a negative grumpy person. . . marching bands march in parades. I don't like parades either. Almost as soon as they start, I'm looking at my watch or trying to figure out where the nearest coffee house is. Let's just say, none of it is my cup of tea, or coffee as the case may be. In college we would make fun of the band geeks on the field. I should have known it would all come back to haunt me. Karma baby.

Music was always a love hate thing with Daniel. He could barely stay in choir for most of K - 4. I have always known how much he LOVES music. When he was 3 we had a keyboard. You could hit one of the keys and make it sound like another instrument, he could tell you the instrument every single time. It was amazing. I knew he had a tremendous ear. So when he was in school and he was screaming in choir and they would take him out. I would usually push for him to go right back in. I always felt like it would click at some point. His choir teacher eventually said, "I think he has perfect pitch and he gets mad in class because everyone's off pitch, or almost everyone." Made sense to me. We had taught him to tolerate things before, I felt we could again. We kept trying. Recorders came. He could not even be in the room for that! I don't blame him. It was horrendous. It was a constant push/pull. We kept at it. Again, this seems to be a theme. For YEARS. Then at the end of 4th grade, about a year and a half ago, we were talking about Daniel's classes for 5th grade. In our school system for 5th and 6th grade you have a choice between, 1. Strings 2. band and 3. Choir. You choose one of them. Daniel announces to me, "I'm going to be in band and I'm going to play the tuba" What? Where did that come from? I always know I'm in trouble when he announces something with such conviction. . . .it was very similar to the bike thing. He was going to do it. That was the end in his mind.

We had one of our "team Daniel" monthly meetings. Here I bring up the fact that he wants to be in band. Most people laughed. OK, don't get mad at them for laughing. Because you have to understand the group. We were all very close and most I consider my friends, and I still do even though he isn't in that school anymore. They had all been there through the ups and downs of choir. Knowing how hard music has been. I said, "no really, he wants to be in band and I'm going to make it happen". Cricket, cricket. I said, "you know what, Daniel asks us for almost nothing. He rarely asks for anything from us. This he is asking for and I'm going to give it to him." I left that meeting knowing that somehow, I had to make it happen. It was a dream of his. He could see himself marching with that damned instrument.

The first problem was that the tuba was not offered. So I found out what the closest instrument to that was. The baritone. I showed Daniel a picture of a baritone online. . . "that's it," he said. It's a done deal. Well, at least in his mind!?!

Tuesday, December 2, 2008

Will the Death Star be the Death of Santa?

A few weeks ago the Santa talk started. We barely got through last year with Zachary. He's in 3rd grade this year. No special needs to speak of, he just asks a lot of questions. Unless it's a disability to ask so many questions your horrible mother eventually tunes you out!? He wants to believe. Last year we watched a lot of Polar Express. On Christmas Eve he drew a picture with a Welcome sign on it and put it in front of the fireplace for Santa. "Santa" dropped one of his sleigh bells on the way into our home. It mysteriously landed on the welcome sign and it was left there for children to find on Christmas morning. He was sold for another year.

Well, it's another year. The questions started. I gave my usual speech about the magic of Christmas and how if you really believe in something, it IS true when you believe it and feel it. One day about 2 weeks ago Zachary came marching into the family room with a look of determination. I knew I was in for it. Zachary flat out says, "Mom, is there really a Santa Claus?" No beating around the bush this time. He wanted answers!

I say, "What do you think?" (they hate this answer, it is my go to answer when I HAVE NO answer)
Zach, "Every single kid in my class says that YOU are Santa".
Me, "why in the world would every kid in your class think that I'M Santa? They all think I'm Santa?"
Zach, "MOM!!!! You know what I mean".

This went on. He got annoyed with me and dropped it. I was hoping it was over. But I should have known better. He's a thinker, and he was planning his next course of action. Then a few days later he comes up to me with a list. Zach says sweetly, "mom, here is my list for Santa, the Lego Death Star is $300, but Santa won't mind, HE doesn't have to pay for it, he just makes it, well, his elves make it for him." Seriously? I have been outwitted, yet again, by an 8 year old! Albeit an 8 year old who is too smart for his own good. An 8 year old who is seriously testing me and my Santa theory. Here is his list, at least he said please and thank you?!

The Lego Death Star is not going to show up under our tree this year, unless a really fat guy in a red suit squeezes his butt down our chimney for real. We already purchased his most coveted gift, an I Pod nano, which I bought at the Apple web site in Oct., reconditioned. But it looks brand new in it's lovely Apple box. It's not red, though, and on his list he put red. Red wasn't available and I bought it before he specified this. So the list has been used against me. He is testing me to see how far I'll go. Would it be worth $300 to see what happens? I think not. Would he be successful in using his emotional pressure? Yes. Will we fold to it? I think not. Is Santa going to be gone? For Zachary, I think so.
Zach will no longer here the bell ringing like in Polar Express. He's going to have to keep the magic alive for Daniel's sake. Daniel won't understand the magic we create for our children. I know 6th graders have told him there is no Santa. When he was mad at me once, he yelled, "you are NOT Santa Clause". I envision him happily chatting away about Santa at school and some kid saying, "Daniel, your parents are Santa" with a cavalier attitude. Not understanding the confusion this would cause him. He is so literal he probably would think that means dad dons a red suit and flies around the world while he's asleep. I think he needs to get some more clarity before we go there with him. Daniel has a "Spy gadget vending machine" on his list? I had to tell him that didn't exist, it was part of a video game, so he couldn't get that under the tree. "It's not real?" he says in his sweet, innocent voice? "No Daniel, it isn't." He seemed to understand, although he was disappointed. It's not so bad to live in a world that you truly think a spy gadget vending machine could show up in your house. But for now, we'll keep the magic of Santa alive the best that we can, for everyone.

Taking Care of Myself

This is the title of my new favorite book by Mary Wrobel. I just received it a few weeks ago via UPS. I found it on the internet at several different sites, but I bought it through A1 books for the plain and simple reason that it was less expensive. I think I paid $16 including shipping. If you have a child on the autism spectrum I suggest you buy it! If you have a child with special needs who likes things in social story format, buy it. This is a wonderful book. I found it because I was surfing the web looking for something that would help explain to Daniel, on his level, about puberty. He is 12 now and we are going down that road. I've been dreading this road. I have heard stories! I regularly read blogs of other parents of autistic boys who are older than us. I am trying to go into this with my eyes open. Why is it that as soon as you are really rolling along well, something has to change? It's maddening! But this book is wonderful for boys or girls. There is a much larger section on puberty for girls that I skimmed through and I have to say if you have a girl, I'm so so sorry! I would not want to deal with menstruation in a girl with special needs. NOT EASY.

I have brought his book with me to several professionals that we deal with and HAVE dealt with for years! Some for 8 years. Let me say that again, 8 years. And each one has said. "Oh that is a fantastic book!" Hmmmm, why do they do this? I know that it is hard to remember to tell everyone everything, but I am a book reader. I LOVE information. The more the better, you can't be over prepared, you get it! Why do they not share this stuff with us?? I have to spend a few hours searching the internet with all sorts of different phrases in Google, trying to find what I'm looking for. The time. That's what gets to me. Because I would have loved this book 8 years ago. It is not just about puberty. . .

Unit 1 is Hygiene. Examples of topics, Washing hands, bathing, washing hair, GETTING A HAIR CUT, blowing my nose, going to the bathroom, and more. Do you know how many hours I have spent writing my own social stories on these issues? How many hours I've spent calling people and asking about it? And here it is, written out in easy to use and understand language all together in one place.

Unit 2 is about Health. Examples of topics, Eating Fruits and Vegetables, SLEEPING AT NIGHT, Going to the Doctor, Going to the Dentist, feeling sick (and the importance of admitting this and not saying "I'm fine" as Daniel does, since in his head it is not OK to be sick)

Unit 3 is Modesty. Enough said?

Unit 4 Growth and Development. Shaving my face, wearing deodorant. Our bodies are growing and developing etc. Daniel started reading this, with such ferocity. He LOVES social stories. It explains the world to him which he finds confusing. (Again, why has no one told me about this when everyone knows this? It's a mystery. ) He was very annoyed that he had to grow into an adult. He read it and then said, with disgust in his voice, "do I have to grow from a kid into an adult?" He wasn't happy. But it helped him. Of course I have told him these things but it needs to be written for him. He loves to read. He has ALWAYS been able to read. I remember when he was 3 and he'd read billboards to me!

Unit 5 Menstruation enough said

Unit 6 Touching and Personal Safety. Touching other people, where people can touch you etc. Very important stuff!

Unit 7 Masturbation. Lord help me.

And an additional story on using a urinal in public. My husband thought this was a good one. I never thought about it actually. Why would I. I DON'T USE A URINAL. Nor have I ever. Nor will I ever. Why would I think about teaching him this? Has anyone else? (By anyone I mean Todd) I don't know.

I brought this book to someone last night to show her (a professional). She said it is her favorite book and hers is tattered and worn (that's not exactly what she said, but that's the phrase Daniel likes to use when something is old. It's Oscar from Sesame street's song. "I Love Trash") When I mentioned that I wished that I had had this book 8 years ago she said, "I'm glad you said that, it will remind me to tell others about it". Thank you! Please tell me. Whatever else you are keeping from me. Please tell me. I need all the help that I can get!!! So I am telling you. Go get this book if it sounds like something that would be helpful! Hope this, well, helps!