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!

Sunday, November 30, 2008


We spent our Thanksgiving long weekend in a few locations. We packed everyone up on Wednesday and went to my cousins cabin north of here. Todd was not feeling well, at all, and I did ask if we should abort the mission. He is NOT a whiny sick person at all, and he said he would be fine. He just had a cold. Let's go. So off we went to the cabin. There is no TV there, although we bring a little portable DVD player for Daniel. Some of the time he takes it to the room Todd and I sleep in and watches videos to get away from the craziness. That being 3 boys ages, 8, 7, and 6. It gets loud. But we have visited here many times and our family loves going and spending time with my cousin's family. We have an easy relationship together.

We put together an entire Thanksgiving feast together on Turkey day. It was sometime during that afternoon that I noticed Todd was going the wrong way in his sickness. Instead of bouncing back as we thought, he looked downright frightening. Most parents know that look from their kids, but there was no denying it. He had pink eye and a sinus infection. So it's Thanksgiving day we are in a cabin FAR off the beaten path in a house with 4 kids and 4 adults. This cannot end well! Daniel told him that his eyes were "red with menace!" This is from "The Grinch Who Stole Christmas", but a very appropriate use of the phrase!

We ate our dinner and Beck had some drops from a previous pink eye episode, which in and of itself was enough to be thankful for!! How would she have those with her? During dinner we all talked about what we were thankful for. Each other was a big one, and so was Earth. Each kid seemed to be very thankful for our planet and nature. You can appreciate it more out there amongst it all! They got to go sledding, build forts (not Daniel he prefers the inside in the winter, I get that!) Daniel sang us the Thanksgiving song from one of his favorite shows of past Bear in the Big Blue House. I looked for the video on You Tube and couldn't find it. He sang it word for word to all of us, he probably used to watch that video 6 to 8 years ago and he knows every word. That never ceases to amaze me! "thanks for the stuffing and pumpkin pie, thanks for the meal that's in store, thanks for the sun up there in the sky! So much to be thankful for!" It's super cute and he did a wonderful job. I liked that he alone got to be center stage and everyone appreciated his performance. Daniel was thankful for pumpkin pie, which he does not like to eat but really loves the IDEA of pumpkin pie. That makes him think of Thanksgiving. He ate one bite and had the most awful look on his face and said "that's great, I'm done now".

We left on Friday and headed to Todd's parents. Where Todd immediately went to an urgent care and got some antibiotics and his own eye drops. We got to spend time with his brother and his wife, Todd's parents and my dad and his fiance. In short, a whole new group of people to infect. I asked if we should go home between these legs, but he'd have nothing to do with it. I went out Saturday night and had drinks with friends from college, highschool and elementary school! Todd very wisely stayed at his parents. I got to catch up and chat with some very dear friends who I don't see enough of. We had a stormy drive home on Sunday and watched a van spin off the road into the ditch, it took much longer than usual to get home, but we made it safely. It doesn't sound like the ideal weekend by any means. There were a lot of negative things, but for me, since I wasn't the sick one I found a lot of things that I am feeling particularly thankful for this Sunday night. And if we get through this week without anyone else coming down with pink eye THAT will truly be something to be thankful for!!!

Sunday, November 23, 2008

Bike Camp VII

Writing these entries about Daniel's bike camp achievements has me basking in the glow of our accomplishments yet again. Sometimes I look at him with such amazement. My heart swells with pride and love. But sometimes it's so much work. Maybe this just goes along with the saying, (I never remember things like this so I'll butcher it) the harder the work the sweeter the reward? Whatever. It makes getting there even more triumphant. I will say I was warned about what would come after camp. But I tucked it away to the corners of my mind, until camp was finished. I need to do this with Daniel, because otherwise it is just too much information to handle at once. I sort of have to do something, check it off my mental list, then find the next thing in line. I know it's there but I compartmentalize it and pull it out when I need it. So the after was here.

The after is practice. He could ride on two wheels, but was wobbly. At camp we had the giant handle to grab if he started going down. At home we won't. At camp there were college age kids chasing him. At home we have 40+ year olds' who prefer a glass of wine to running in 5k's. So my summer of chasing Daniel up and down the street had begun. We added "ride bike". To his job chart. The job chart was started by a speech therapist we do groups with on Monday nights. She's awesome. I'll write on that later. But she started a job chart. It was hard to get started, as things usually are. It's the transition. But now. If you put something on that job chart, it WILL happen. Just try to stop it! So we added ride bike. Usually I'll put things like this down as 3 times a week or 2 times a week. Then if we are out of town or something we don't have to bring the bike or whatever with us. Because like I said, we'd be doing it. So we started, riding up and down the street with me chasing him. Within a few passes I was gasping for air and coughing and looking downright pathetic. He'd get mad at me because I wasn't keeping up. After a week or so, I mostly had to get him started. He had not mastered starting on his own at camp. They would like this to happen, but he didn't quite get there. So I would tell him which house to stop at, get him going and jog at my own pace to where he was. He would have been stopped and WAITING for me. Waiting is a four letter word for Daniel. Not ever something that makes him happy, but he had too. Mom's just too out of shape kid. So he'd turn around and we'd do it again. Up and down up and down. Of course during this time we were having some of the hottest Michigan weather known to man. It can get humid here, and it was. There is no point to this information except that I'm whining and hoping people feel a bit sorry for me. I know I probably just sound pathetic, so I'll move on.

As he got more steady, we moved on to starting. This was and is always a tricky part of bike riding. But he did pretty well. You just have to STICK TO IT. I'll admit having that job chart probably helped me too, because it kept ME on task. I can see why people bail on this. This probably took about a month to get to this point. We decided to go around the block. It's a pretty good sized block. I was still on foot. So off he went. But I was still jogging and really, my stamina did not seem to be improving. I sort of had high hopes that it may, but I didn't seem to be progressing as much as Daniel. He would get so far ahead of me going around the block, since he was ON A BIKE and I was running and gasping. So I would eventually have to yell for him to STOP! This did not go over well either. He doesn't like to be interrupted. I would just apologize and ask for a minute to catch my breath. It doesn't go without saying that neighbors would usually be smiling and waving at me and, I'm sure, laughing hysterically when they'd go inside! I don't care, we were making progress!

We were going "up north" as us Michiganders say. I wish I knew how that started, but pretty much where ever you live at some point you go "up north". It widely covers almost any destination in Michigan. So in our up north preparations, we decided we had better bring the bikes to keep up the practice. The kids and I were planning on being gone for 2 weeks, so that would be a huge interruption. We brought the bikes. But when we got "up north" I told him, I wasn't running anymore, I was riding my own bike. If he needed a push I could start him and then jump on mine. This was not happy news because apparently I had set the pattern of running. But mama was done running and needed to get her butt on a bike to keep up. If you have a child on the spectrum, to me, this kind of change is easier to do in a different setting. We were in a different city, so that made the change more acceptable to him. Had it been on our block, I think I would have heard a lot more complaining. It is best to be firm and not show any chance of cracking. If he wants to ride, these are the new rules. He accepted and off we went. Riding "up north".

Our bike riding then expanded again. During the 2 weeks up north, we expanded to places. The beach, the skate park, downtown or the library. This is what we'd been working for. I would ride behind Daniel so I could keep my eyes on him and shout out instructions like "slow down", "don't hit the people", or more specifically "yell to the people excuse me and go around them". Things like that. There are literally thousands of scenarios that can come up when you are riding. Daniel is autistic and he does not generalize very well. So pretty much you have to do every situation over and over and over and it doesn't generalize to another situation. It is exhausting. Sometimes when we'd get home I'd have to escape to a quiet room to pull myself together. It was really mentally exhausting.

I discovered there are lots of terms he didn't really understand. One of which is crosswalk. By the way there are, visually, tons of different crosswalks. (I'm married to a civil engineer and complained about this, but apparently he does not have the authority to change crosswalks all over the USA. Huh.) They don't ever look exactly the same. Some have stripes in them, sometimes it's just parallel lines, sometimes the pavement is raised. No two look alike, therefore at each one he doesn't seem to know what to do. This became very frustrating for me. I found a cartoon online that completely made me laugh. I have showed it to people who do not have kids on the spectrum and they didn't really get why I thought it was so funny. Or they told me what they thought and it was way off. So maybe this is just for my own amusement.

I realize explaining this will probably take away the humor, but as my husband tells me with some frequency, I suck at telling jokes, so why stop now? Ya see, my vision of this is Daniel is the person on the sidewalk. The sign says WALK. So he would just WALK. That's what the sign says. So if someone is turning their car in front of you, even though they shouldn't with pedestrians present, he'd just WALK. If there were crocodiles in the road, dog gone it, he'd go. The sign says to after all. It makes it very difficult to teach a rule then explain the millions of scenarios that break the rule. I would constantly tell him to cross within a cross walk and he'd go off in the other direction, the wrong way, and therefore INTO traffic. I swear I lost 10 years of my life in these exchanges. But, it all has to be learned. I was surprised that he didn't understand some of these things already. But apparently, he didn't! Who knew? And if there is any chance of him driving and owning that "little yellow car" he so wants to own some day, better to start learning these things now, before he is behind the wheel of a deadly car.

In the mean time, the bikes are hung up on the roof of the garage. The snow is flying, way too much for November, and we are taking it easy until spring time. We did get to take those family rides to the library, to his old elementary school (2 miles away!) and to his current school. We never did make it to the Aquatics center. But that's OK, we have lots and lots of bike rides in our future.

Thursday, November 20, 2008

Bike Camp Part VI

My nerves about the new bike were alleviated when upon rolling Daniel's new shiny silver bike into the camp the camp director looked at it and got a huge smile on her face and said "SWEET BIKE". They were very impressed. I had done well! It wasn't a model on their list, so I was nervous, but it seemed to meet the criteria. Phew!

We put it aside and he gets on a bike. Soon enough he switches to a two wheeler. It has a big handle on the back so the spotters can grab it easily and help guide them. They can also be running and easily help them balance. You can purchase the handles and attach them to your own bikes. I inquired about this and they said I could NOT because Daniel's bike wouldn't accommodate it. It is an adult sized bike and the construction won't allow it. Great. That's a strike for me.

So Daniel is riding while they are holding the handle. When they start letting go and running behind he would sort of make these diving turns. He would turn SO sharply and it would look like he was about to wipe out, but he would adjust it (and his spotter would help). Then he would SCREAM at the top of his lungs like someone was doing this TO him, when in fact he was doing it to HIMSELF. This continued on for a while. The directors were called out onto the floor. Daniel was upset. Oh boy. Here we go. Here is a picture that I titled "the Daniel conference," He's right in the middle of it, by the way.

Then they are headed over to the doors where I'm looking in. I here "mom, we need some help". She says she has seen this before (I told you they've seen everything). They thought he was doing it for a few reasons 1. He is testing the new found skill/boundary. Seeing what will happen. 2. He is getting some sort of sensory pressure when he does this. It, at the same time, thrills him, and scares the crap out of him (hence the screaming!) They, to their credit, wanted my advice. I believe I told them to tell him why he shouldn't do that and keep trying. I believed he'd work it out. And, he did. The screaming was a change from the constant singing of the last few days! I couldn't believe I was thinking this but I wanted Monster in the Mirror back! FAST! We left that day with him having ridden a bike on his own. I mean really. Day 4 he did it on his own. When that child sets his mind to something, he achieves it!

Day 5, Friday. He starts off inside. Pretty quickly they move him out to the parking lot. I am getting anxious because I am realizing after this session we are ON OUR OWN. I need to know what the heck I'm doing to help him. They told me to "where your running shoes" on this day so I could run with him. Excuse me? I am so out of shape. I may not be over weight, but in terms of stamina, I can barely make it to the corner in a jog.

Daniel is, as expected, also feeling anxious. This is a big deal. He was having an inner struggle, as was I. I needed these people! Daniel was getting really upset and Troy the spotter was standing next to me as another guy was running around the parking lot with Daniel. Sometimes they switch off so they can take a breather! Daniel was crabbing and yelling and generally unhappy. I don't know if it's because he was outside and thus far he'd been inside or the fact that it was 90 degrees in the shade. But he was pissed. I find this amazing, but Troy said, "we need to get him singing again". I was astounded! He was right! We do that all the time when he gets really edgy and unhappy. We get him on a song or something we know will "flip that switch" and turn it around. So I said, "yes, that is exactly what you need to do!" I mean really, I am so impressed with this guy. I wish I could contact him and tell him how incredible he is. In the craziness I don't think I ever did that. So Troy says, "he needs to sing Monster in the Mirror". Another volunteer said, "well get out there and get him singing it". Troy says, "I don't know the song." EVERY volunteer there laughed and said, "come ON you HAVE to know the song you have heard it for 75 minutes a day for 4 days!" I told him he didn't have to know all of it, that he could sing one line and he'll start in. So, bless his heart, Troy ran back out there, and started jogging next to Daniel. I couldn't hear what happened, but by the time they came by me again, Daniel was smiling ear to ear, with Troy running beside him, singing wubba wubba wubba , woo woo woo, that Monster in the Mirror it just might be YOU! I mean, how wonderful that an early college age kid would be that in tune to him and instinctively know what he needed. It brings tears to my eyes thinking of that again. BLESS you Troy! I hope you are out there working with kids, 'cause you should be!

At the end of the camp everyone went back inside. They had a little ceremony and gave the kids certificates and a bag of treats and a calendar. All of which Daniel was VERY excited about. He should be one proud kid, and he was. He looked in the mirror and faced that monster who was stopping him and he conquered it, because sometimes that Monster in the Mirror, it just might be YOU! In case you can't quite get the tune in your head. Here it is for you. If you were a Sesame Street fan, I guarantee you'll remember it and it will bring a smile to your face!

There will be one more part to this series, because, though it seems to be the end. It's the beginning of a lot more work. You need to be ready for that if you decide to go down this road! So look for part VII. I know I said I wouldn't go that far, but we have to be flexible, right? :)

Monday, November 17, 2008

Bike Camp Part V

Tuesday. Same thing, next day. Pack up everything, get into car. Drive for 75 minutes and start the camp. Each day the back "wheel" is changed so less and less of the flat base is touching the ground. It is gradual and the guy who invented this is a genius! Daniel gets on and GOES. He doesn't seem to be having any troubles. It is actually all going OK! I start dreaming of bike riding. The places we could go. The freedom this would give him. During our talks about this he says he would like to ride his bike to the library. That would be a great ride for the kids and I to do on a summer day. We talk of riding to the Aquatics Center. Our local pool that we frequent during the summer. So many things to do. Another was for Daniel to get exercise without knowing it! Oh the possibilities.

We finish day two without incident and head BACK to the zoo. This turns out to be the best zoo trip we've ever had. That is saying A LOT because we have been to A LOT of zoos. This one many many times. The Detroit Zoo is a fantastic zoo. I can't believe the number of people who live around here and have never been. If you haven't, please GO. These are my boys on the train. As you saw a few posts ago. Daniel loves trains. That is the first thing we do is get a ticket for the train. It takes you to the back of the park. Then we work our way to the front. It's the routine!

The polar bears are wonderful. On this day we lucked out. They were very active. You can go in a tunnel under the water and if you are lucky they'll be swimming above you. As they were here.

This guys stepped on the top of the tunnel. Look at the size of that foot! It was awesome! Then he decides to sit down and take a rest.

That playing was wearing him out! Here are my boys enjoying the bears!

This was a wonderfully successful day. It was exhausting and I could see it wearing on Daniel. He had ridden the bike two days for 75 minutes each day, plus walked around the huge Detroit Zoo for hours. He deserves it. I can tell he really wants to learn to ride. That is the most important thing. If they don't want it, it is not going to happen! No matter what.

Wednesday at the camp is the day that the parents meet with some of the camp officials. They have had two days to watch and evaluate your child. They sit you down and tell you what they are going to need to ride and what you are going to have to do to continue after camp is done. It is a big commitment and unless you are there in terms of committing yourself, after the camp is done it isn't going to work. They told me what size bike Daniel would need and gave me a list of recommendations. I can list off many things that the bikes should not be, but it needs to sit back some, not up like a mountain bike. More like a cruiser. Your weight is more evenly distributed. It's easier to ride. Now, if you have a bike you can bring it in on Thursday and they will make sure it is set up for him or her. I did not have a bike for him. They strongly recommend you invest in a GOOD bike. Not a Walmart special. They don't last and their cheapness will not make for it being easy to ride. (I secretly love this because I am very very anti Walmart, why? read up on it!)

We get home from the bike camp, fairly early. We didn't have any big outing planned and frankly at this point we were all to exhausted to do it anyway. But I was armed with my list of bikes and I hit the computer for local research. After a few hours rest I drug the boys out to a local bike shop. Now as soon as you say "bike shop" you can hear the cha ching of the cash register right? Right. The first stop was very unsuccessful. They didn't have what I was looking for in his size bike. I know the people who own this shop and wanted to support them. But I also wanted a bike to bring to the camp the next day so they could look at it and tell their thoughts.

We went home and I looked up another shop in Lansing. Riverfront Cycle. I highly recommend this store. We had a GREAT experience. I lucked out in that my cute young salesman had been through a similar camp helping teach kids with special needs to ride. He knew where I was coming from! When things like this happen I feel destiny and everything lining up. It sounds crazy, but it felt right and it was. We got Daniel the MOST amazing bike. It is a Giant which apparently people who ride bikes know of. I do not. The 10 speed bike I had in high school I bought with my own money at Meijer, so I am not an aficionado regarding bikes and quality. Which is why I wanted the camp instructors opinions. I bought the bike and new helmets for both boys (cha ching) and off we went. I immediately had a panic attack that I bought the wrong thing and, well I don't know what I thought would happen, but I thought I would have done the wrong thing (OH NO!?!) and then Daniel wouldn't want to return it. I guess that's my thought. But no. The next day, Zachary went to a friends house and Daniel and I loaded up his bike and took off for Detroit. They were going to put him on a two wheeler today! Thursday. The goal is Friday to have "graduated" to the "outside". We were on track, we had our new Giant in the back and Zachary didn't have to spend another day riding. Things were looking good. . .

Bike Camp Part IV

I never thought this series would end up four parts, but in reality it may be five not more than six! Too wordy? Probably! But hopefully there is at least one person out there it helps!

We have arrived at Bike Camp week! Monday is here. I have Mapquested, checked times, maps, moon alignments and also oddly enough, the weather. You see my big bribe, I mean reward, for getting through 75 minutes of riding a bike non stop in circles was that he'd get to go to the Detroit Zoo afterwards. We lined that up for Monday. A risky decision as I might be letting him catch that dangling carrot on DAY 1, but we went with it. We were meeting my cousin and her boys there too. I had it all planned. Zachary came along as we were planning the big zoo day too. Excitement was high. We had lunches and snacks, Nintendo DS's for car and while Zachary is waiting. Books. Basically, it looked like we were moving to the bike camp. I have learned to have plans a, b and c ready though. This is the looking ahead at all possible scenarios that separates us from the general ed parents.

Bike camp consists of getting on these special bikes. They look "normal" from the front. But in the back there is a wide flat "wheel". This gives stability. There is no rocking back and forth like on training wheels. It gives the rider a much more stable base. Plus each child has at least one spotter. Daniel had two for part of the camp. I believe this was due to his size and weight which you had to provide ahead of time. 120#'s of boy falling over on you can take you down in a hurry. Although I never saw someone fall over. The bikes really don't allow for that. Although it's not impossible. So he had two guys on him. The parents were informed, "no parents in the gym". Gasp! We had to watch through a window. The camp was in a huge gym in a church in Bloomfield Hills. They had bikes ready for the kids via the height and weight previously mentioned. I guess experience has taught the instructors that parents are a distraction. While I totally agree with this, I was pretty bummed. We could check on them though. They just got on and RODE. Around and around and around. Then stop and switch directions (so you aren't always turning left, for example) What this does, and I'm paraphrasing so don't quote me on this, is basically training your brain. That's why they don't want them stopping to ask mom if they can stop and hang out. The more you keep going the better. Then if one kid stops they ALL stop. They obviously would let them stop for a drink if needed, but would get them RIGHT back on. Had they told me this ahead of time I never would have thought this would be possible. But he just did it. These people travel all over the country teaching our kids. So don't let me you hear you say they couldn't handle your kid you'd have to be in there. I believe they have seen it all. And you are right outside the door. Then you go home and sleep on it. This is an important step. Apparently you are still learning it as you are sleeping. I love this!! Learning something while you are sleeping? Pardon the pun, but for me, that's a dream! ahem, sorry. As Zachary likes to say, "my mom loves to sleep." He's so right!

Now when Daniel moves, he sings and or talks. So I can here him in the gym singing. Believe me. This would not be listed under the category, "singing quietly to yourself". He BELTS it out. He is moving, he's singing. It goes hand in hand. He used to do it on the swings too. It's like the motion sets something off. So he's in the gym with Troy the spotter running after him and Daniel is singing "the Monster in the Mirror" at the top of his lungs. (Think Grover from Sesame Street). Sigh. This is Troy with Daniel. These people sign up to RUN for 4 shifts, 75 minutes at a time for 5 days in a row. There is a very special place for them in heaven!

We finish up. Go to the zoo. The whole way to the zoo. DARK clouds are looming. Oh no. This never makes him happy. He is understandably concerned. We get to the zoo. I call my cousin. They are standing by the entrance. By the time we get there, it's raining. My cousin, looks at Daniel (she is a social worker by training, a domestic goddess like myself currently) and says something like Daniel lets go to my house and we'll try again tomorrow. And about as quickly as that happens the sky's parted and, saying it rained, well that would be too much of an understatement. We all turned around and RAN! Daniel was running (this does not hardly ever happen!) . He was running and screaming at the top of his lungs simultaneously. We got into the parking ramp and he let out a scream that you would for sure think someone was stabbing him. The ramp was FULL of people escaping the rain. Now all looking at us. I have LONG ago gotten over this. It used to kill me. I guess I'm not so self absorbed anymore. I calmly told him we would try again tomorrow. He calmed down. Here is the other thing I hear, "you're so lucky he calms down like that, my child wouldn't." Well, my child didn't used to either. This is from YEARS AND YEARS of saying this over and over and over and THEN FOLLOWING THROUGH and doing what I said I'd do. He finally learned he could trust me. I will not say I'm going to do something if I'm not going to. He wouldn't understand that. I don't say, "we'll for sure go tomorrow". "I say we will try again tomorrow and see what the weather is doing."Clearly by the rain that was coming down there was no way we were going in. That was a blessing probably. If it had be drizzling it might have been a more difficult call. Zachary was thrilled to be going to play with his cousins. I guess, at least we had more opportunities to try again. We had four more days. If we had waited until Friday and that happened, we would be going over yet again.

It wasn't how I planned it, but we had plan B. He knew we'd try again. He finished his first day of camp. Now it's time to go home and, well, sleep on it. And try try again.

Wednesday, November 12, 2008

Crying at the bus stop

Over the past few years I have watched a phenomenon happen. As I was walking home from the bus stop this morning I realized there is something sort of magical that occurs there. It's a place where, usually, women gather every morning and afternoon for a short period of time and during those times we all learn snippets about each other.

In my neighborhood we are fortunate that our bus stop is at our neighborhood park. This creates a wonderful time in that, on days weather permitting, the kids want to stay and play for a while. Sometimes this for a while turns in to an hour, sometimes it's 10 minutes. You never know. But usually we are there for some time with each other. If one of is late, we tell the bus driver, no worries, we'll take care of them until the mom gets here. If we are stuck someplace we can call someone and say, "will you be there and tell them not to worry, I'm coming". All of our kids are comfortable with this. They know they are in good hands. We have quite an array of "moms" at our stop. We have Dr's, Grad students, ministers, Speech paths, almost anything you need, we have it. It's sort of an unlikely group of friends who all bond together at 8:00 am and 4:00 pm 5 days a week. It is wonderful to know we all have each others backs.

Sometimes we talk about the kids, sometimes it's school, sometimes it is about ourselves as women. But what I have noticed is that these are people we don't know a whole lot about. I really don't know their whole families. I hear about the high school age daughters, husbands etc but really if I ran into them on the street I wouldn't know who they were. Yet I consider these people my friends and someone I let my kids go to their houses. We have built the relationships over time. We share joys, but we also share our pains. We can in 10 or 20 minutes unload what is going on, often cry, and then move on with our day. No one tries to fix anything. Usually we nod and say we understand and let me know if I can do anything. Sometimes when situation calls for it, we make meals for people, or go in on a plant or flower arrangement, signed, the bus stop moms. But I have come to rely upon these people and share with them. When appropriate they can say "wow that sucks, I'm sorry that happened" And that can be the end of it. Because really isn't that what women want? They don't want someone to solve their problems. They want someone to listen, or not listen, if you need to cry you just do, and then you move on.

I had a call during the day last year, saying can you get him from the bus stop I'm stuck at the hospital for a test. It went long. Is everything OK I ask? No, I have a tumor, is the reply. So I get the child from the bus stop. He's not worried, he gets a play date and the parents get piece of mind that they can deal with their immediate problem. We visit her in the hospital, bring her food, make her laugh and hope we did enough. Luckily this time, everything turned out ok.

The day after Obama was elected 3 of stayed and cried at the joy of knowing our world had changed forever.

Today someone was crying at the bus stop. She has a LOT going on. And you never knew it. She shared what it was, said "wow that felt good to say out loud". Then turned around, walked away and went to work. We all said how sorry we were, how can we help. And we mean it. We would all step up at any time. But really we did the most important thing of all, we gave her an outlet. An outlet to someone who doesn't know who your talking about, has no emotional connection to, just a sounding board. It's a beautiful thing.

Sunday, November 9, 2008

Little red caboose chug chug chug

Today we went to the MSU pavilion because there was a giant train show. We have gone to this before but it's been a few years. It is HUGE! When Todd asked Daniel this morning if he'd be interested in going he screamed YES!!! It opened at 10:00 am so we were going to get on it and get there early. Which we actually did!!

Let's give some background. For those of you who are not familiar with autism, I have never met a child on the autism spectrum who did not LOVE trains. Love love love. I can't explain the love. At one of the very first autism conferences I went to the Dr. talked of this fascination. His theory is that they love linearness (is that a word?) OK, things lined up. Little kids on the spectrum are always lining things up. Trucks in a row, whatever it is. I find they are the same type of item. For example, hot wheels cars, dinosaurs, etc. (all also favs of kids on the spectrum!) Trains are naturally all in a row on their very own. And they MOVE. When Daniel was little he would move a car or something from just outside his peripheral vision then across his eyes. It is a stimulation. Occasionally he still does this with his hands. Not too much though. Here he is at the show doing this in a somewhat natural way.

His face is close to the glass and he is waiting for it to travel through his field of vision. This was his favorite table as they had "the best tunnel". And even greater excitement is watching a train travel down the track all neat in a row THEN watch it enter and exit a tunnel! Wow now THAT is excitement. He was almost shaking! We of course ran into one of the boys who is in his group speech therapy that we attend on Monday nights. There they mostly practice things like conversation etc. He did insist on running over to say hello to him and his dad. So this should be a nice conversation at group tomorrow!! It was NOT too surprising that we saw someone from the group though! LOL!

Here is my sweetie in front of one of the first exhibits we saw. The trains were quite large and one of them had smoke coming out of the engine. (on purpose!) He really enjoyed this. They had mats around it that you could kneel on and look. Unlike the last time we were at this show, Daniel did a GREAT job "looking only and not touching". He would have his hands shoved in his pockets so he wouldn't be tempted. These guys are very serious about their trains and they don't want anyone getting too close or touching. Daniel was even really good this time if something happened to one, like it came apart or they had to stop it to adjust it. He wouldn't get mad or upset. He understood they had to do that sometimes! Now that's progress! We even saw one train enthusiast inadvertently crash two of his trains. He didn't realize they were on the same track! While this was somewhat disturbing , he handled it well.

This was a huge exhibit made entirely of LEGOS. The trains, the buildings, everything. It was amazing. Now while a LOT of kids on the spectrum love Legos, especially the Asperger kids, Daniel does NOT. He appreciated the fact that this was entirely built from Legos, but they are not his thing. In fact. . . . if loose Lego pieces are laying around he GAGS at the sight of them. Does anyone else have this or any other inanimate object that makes them gag? I'd like to hear from you! I have something stored deep in my brain that this happens sometimes, but I can't quite remember. Now don't tell me it's because he choked on one as a little kid or something. That is not it. There are some things he just gags with. Usually it's a food, and usually he has never tried it, but it's the smell of it. But Legos, that's a whole different thing. . .
The train show was a success. Daniel found a $5 DVD he wanted BAD! That will probably be the best $5 I have ever spent. It is trains driving around on tracks. He'll spend hours and hours over the next years watching it. OK maybe in the next weeks, but I don't want to admit he may watch that much TV on the weekends! Zachary desperately wanted a tank he saw? I bought it for him. I even had to talk the guy into letting me write a check, because I was out of cash. I talked him into it. In fact it was such a success, it has me thinking, do we want to get a small electric train kit for the basement? Would he go nuts if it had to keep being readjusted? I think he'd be better than at any time ever before. All he'd need is a circle with a tunnel and I THINK he'd be set. Hmmmmmm. Just maybe.

Thursday, November 6, 2008

History has been made!

I have spent the last several days sort of in shock that it actually happened. Our country, the United States of America, elected Barack Hussein Obama. I honestly didn't think it would happen. I wanted it to happen. I wanted it to happen so much that I couldn't get my hopes up. That's how I've always been unfortunately. I keep my expectations low, so I don't get disappointed. It's not exactly the way to live vicariously, but it is self preservation.

Zachary has, for years, loved history. Especially presidential history. He, at age 7 could name the presidents in order backward and forward. In about a minute and a half. He quizzes me constantly. "Mom, name the first 10 presidents in order." I can get to 6 then I get stuck. Every single time. He breaks out in hysterical giggles every time I get to John Quincy Adams then stop. "How can you not remember mom?" I don't know. I just can't! He is full of statistics and information. I love that, among many things about him. About a year and a half ago we were in the car in Florida and we were playing the initials game. You know? You give initials to a person then they ask questions to figure out who it is. So we are going along with SB (Spongebob) etc and he says to my aunt. GF. The questions start, and continue and continue. Finally, she gives up. My aunt is a teacher and knows a LOT of information. She gave up. Geraldine Ferraro. She ran for vice president with. . . . hmmmm I can't remember who, but she did and I can picture her but can't remember the details. That's how my brain works! We laughed and laughed. He stumped her alright.

So when this whole election process started he was THRILLED to find out a woman and an African American were running against each other on the democratic ticket. How exciting. History in the making. Whichever one went on to run would be history. The boy loves history. I was sort of unsure through the whole thing who I wanted to get the democratic nomination. I felt they both had their merits. I knew whoever it was I would be supporting that person. Then when John McCain picked Sarah Palin (cough cough) Zachary was even more thrilled knowing whoever won it would be historic. So, in short, this election became a BIG deal in our house.

I am only referring to Zachary in this entry because, despite my trying, Daniel doesn't understand this whole thing. On the way to school, we'd chat about the signs on the lawn, of who the homeowner is supporting. I'd describe what was going on. And he'd talk about the sun or the trees or the squirrels and I'd go back to what he wants to talk about. In recent days I would talk about Barack Obama and John McCain, then ask the next day and it would be all new again. It left a pit in my stomach, because I knew he didn't understand. It meant nothing to him. He had no connection. That is where it is left up to us to try to elect a president who we feel can help Daniel the most. Isn't that what it's about for us parents? Trying to lay out a future for your children that is the best for them? So we keep talking to him about it. The day after the election he finally said "Obama". So we were getting somewhere. We keep trying.

When Obama came to MSU I rode my bike down to campus and stood outside of the rally. Some said there were over 20,000 people there. It was electrifying. I don't care if you are a Republican, Democrat, whatever all were there. There were McCain supporters carrying signs and shouting at people, there were Obama supporters coming together. I was smiling the whole time. This is America. Where everyone can come together and listen to a speech and be against it or totally invigorated. I loved every second of it. I missed all the people I was supposed to meet, but really I think it was better. I stood there on my own watching the people and taking it all it. It was wonderful.

As the election drew near, Zachary asked if he could come and vote with me. Absolutely. Talk was the lines would be long. But I knew he wouldn't care. On election day I went and signed him out of school. He was SO excited. Not to be leaving school, but because my 8 year old knew that sometime huge was going to happen that day. I, was so proud that he wanted to be a part of it. That an 8 year old boy understood the gravity of what was happening that day. So we went to the polls. It was very crowded but not really a line. We waited maybe 5 minutes. We saw neighbors and acquaintances. I read through everything with him and showed him how you fill out the ballot. He was fascinated. We went back to school.

Todd and I watched the spin and results and the magic maps with great interest. It seemed early on that there wasn't going to be much of a contest. We were both very tired and went to sleep before the concession speech. But the next day I watched everything online. I really couldn't believe it happened! I was sure that some how it was going to get messed up. But no. It actually happened. The first thing Zachary asked me was who won. When I told him Obama, he was jumping around the family room. I was so excited for Obama. But I was more excited for our country. I really didn't think that I'd see an African American become the president of the United States. The negative part of me, felt like too many people are still to racist to elect someone like Obama. But Obama did something no one else has in a long time. He united people. People came out to vote in record numbers. They made history happen. Each and every person did it together. I know people who cried all day Tuesday with joy, elation, relief, and hope. The only time I cried is when I told my children it happened. That Obama was elected for them. It was the knowing that anything can happen. The walls can come down. That individuals can work together to get it done. That anything is possible. That this lesson transcends the election. In our house, knowing anything is possible takes on a different meaning. It is not putting a limitation on someone. Not deciding what they can and can't learn. Because Daniel has proven to us over and over, he will always surprise us. Sometimes, even your country can surprise you.