Wednesday, January 28, 2009

Dealing with Death

I have discovered that for me, writing is very therapeutic. It will be something I do for the rest of my life, whether it is privately or for the internet to see. After writing my Uncle Tom's tribute, I felt so much better. Yes, I cry every time I read it, but it's worth it. I tend to not to be able to verbalize things (talk out loud). I shut down and can't speak. But when I sit at the computer my fingers don't stop moving over the keyboard.

I have been a bit distressed at how Zachary was taking the news of Uncle Tom's death. He wasn't talking about it at all. Where would he get that from? He had DEMANDED we not bring up the funeral to him AGAIN. Well ok. He doesn't DEMAND anything. Ever. I get the message. He came home from school Monday talking about what a terrible day he had. He said "I SHOULD have had a good day, there were lots of good things happening but I wasn't enjoying any of it and I DON'T KNOW WHY?" Hmmm. I'm no psychologist but you just found out yesterday that your very close Uncle died. He said, "really, is that why?" I said, "I'm still very very sad, and will be for a while." "You are???" he asked. Obviously he thought the day was done and it was time to move on. So I suggested he do what I did and write and/or draw something. He is very good at these things and since he can't seem to be able to sort things out, I thought this may be helpful. He was excited about this idea and started "thinking about how to proceed."

He was a bit stuck, so I showed him some pictures that I had gathered to see if that would give him some inspiration. He saw the picture of my aunt and uncle together and I could see him melt inside. "I love this one.", He gasped. It was taken at the Tampa zoo on our last visit to Florida. That was all it took. He was off and working. This is what he came up with:

Front cover


This is a bit hard to read, but he drew, William H Taft (a president and as I said they shared the love of presidents, and Taft has some interesting stories) The Detroit Tigers logo, the Red Wings hockey stick, Michigan State. A turtle for their visits to "the Turtle Bridge" by Uncle Tom's house. Then he wrote, "This is what I think of when I think of Uncle Tom". Which makes me cry all over again. I seriously have to go buy some waterproof mascara.

I could tell after finishing this last night that he felt a bit better. Before bed he looked at me and said, "The last time I heard Uncle Tom's voice it was singing me happy birthday". Yes it was. I said what a wonderful gift that was, to have that to remember and have it be such a nice message. I wish I had learned at nine that it is helpful to work through your feelings by writing or drawing, if you are unable to talk. I was 41!

I've tried to talk to Daniel more. As soon as I say something about Uncle Tom he just says,"oh no, he died, oops" Which is frankly starting to make me laugh. The "oops" gets me, like he put on the wrong color socks or something?? Then he continues to ask if Aunt Judy is still alive. Yes she is. I asked Daniel if I should have my picture taken with her when I see her to show him. Daniel replied, "THAT would be a great idea." He needs a visual, so I'm going to give it to him. Neither of them are going to the funeral. Zachary because he has made it more than clear, Daniel because whenever people cry he yells at them to stop. A funeral probably isn't the best place for him? Yeah, I think not.

I'm busy getting things settled here so I can be gone for two nights. I have looked through my pictures, had copies made for the family, written my entries and cried my eyes out. I think I'm ready. I KNOW I'm ready to give Aunt Judy and my three cousins huge hugs. I'm ready to go drink a Manhattan or two in my uncle's honor. I'm ready to see my eastern cousins flying in for the funeral. I'm ready to face it all. Will I cry? You betcha. Will I have remembered to buy new mascara? I hope so.

Monday, January 26, 2009

My Dear Uncle, you are already missed

This weekend my dear Uncle suddenly left this world. It was quite a shock to everyone and I am really not dealing with it very well. I am no stranger to death, but losing people does not seem to be something that you get better at. No matter what, it is a process. A process that is different for everyone.
My uncle and my aunt have been living in Florida ever since the year of hurricane Katrina. Even though they are far away from me I believe that I keep in better touch with them now than when they were 90 minutes from me. We "talk" on email daily as well as play games against each other on facebook. My family has gone to Florida several times to visit and they have been here. They treat my children the same as their own grandchildren. They are so full of love it is overwhelming. Besides my parents, they are the people who have been closest to me for my 41 years.

My uncle was, among many things, a teacher and principal. For this, he has touched many many lives. But this is not the context in which I know him. I'll always remember him being funny, clowning around and making us laugh. I spent weeks at a time at their home in Detroit and I can't ever remember a time with him being angry. He raised, with his wife, three wonderful daughters who I feel are more my sisters than my cousins. Besides as an uncle the roles I knew him in are father, husband, brother and son. He was an incredible family man.

He brought me to my first Tiger game as a small child. I remember walking into Tiger stadium with him with my hands already full of treats. He never skimped on those! I remember the giant field and how much he LOVED baseball. I recall being very sleepy and slightly nauseous by the end of that evening.

He was a man of patience. I don't know if I could drive four young girls to Florida in a station wagon in August! Only to spend a few weeks in Florida and turn around and drive back.

He had an amazing energy. He was always thrilled to see you and give you a hug and kiss. He was a very warm person. I remember his freezer being stocked with toasted almond bars in the summer from the ice cream man. He would buy a bunch and throw them in there for later. On those summer days I think of him as we were waiting for him to finish cleaning out the pool so we could all jump in and play.

I remember going to baseball card shows and staying at the Troy Hilton with them while he sold his collections and bought more from others. He was an avid collector of memorabilia.

He always had a sporting event on TV and our common love of Michigan State was very strong. This is where he went to college and met his love. This is where I went to college and stayed with my love and settled down and got married. They loved to come and visit and drive around our beautiful campus and go to the river to feed the ducks.

He had an incredible memory for facts and statistics. It seemed to me that he knew every answer in Trivial Pursuit! His facts of the presidents are one of the bonds he had with my children. He and Zachary would run through them together and then when he told Zachary he could list them backwards, Zachary was determined to learn that too. He had just sent the message to Zachary that Obama had the distinction of being the 4th president with the same double digits. Number 44. That only 11, 22, and 33 also had this honor. They could both tell you the names of those presidents, but not me! Just Friday when we listened to the Happy Birthday song on our voice mail being sung for Zachary from them Zachary turned to me with a smile and said, "I can hear Uncle Tom singing Zachary Taylor for my name". I can't believe that was just on Friday. Daniel does not really understand. He simply asked if Uncle Tom was in heaven and then he asked if Aunt Judy was still alive. I assured him she was. He can't process any of this beyond that.

Uncle Tom was determined to break Zachary's record number of fish caught at Beckie's cabin. He did, and was sure to tell him! He was always joyful, friendly and loving. A wonderful example of a family man that we were all lucky to have as a role model. I am still stunned by his sudden departure from our lives. I can't imagine him not being here to greet us. I loved him very much. I am still trying to find reassurance that he is with us in spirit and watching us. I hope that next summer when Zachary's catching fish that Uncle Tom will be light over his shoulder helping him reel in the biggest one in the lake and gently whispering in his ear congratulations on a job well done.

Friday, January 23, 2009

Anything's Possible

If you would have told me six years ago that I would have just attended Daniel's third concert AND that he would be playing an instrument in that concert, I would have told you that you had completely lost your mind. If you had told me that on that night we would have a new African American president sitting in the oval office, I may have called for you to be put away!

Yet, here we are, the day after Daniel's third concert with Barack Obama in the White house. I don't know which one is more unbelievable to me? In obviously very different ways they both show what a determined mind and spirit can do for someone. Six years ago the professionals that worked with Daniel made the decision to pull him out of music class and instead use that as his speech therapy time. This was without my consent and believe me, once I figured that out (at the end of the school year) I complained to everyone. I wasn't happy with the decision, but I do understand where it was coming from. When he would go to music he would scream and scream, and scream and scream. We enrolled him in music therapy at our local state university. It is a program that is well renowned. People swear by it. It is amazing. I am pretty sure that we were the first people to flunk out. Don't get me wrong, they didn't ask him to leave or anything. It's just that each and every half hour session we went to (for $20) he would scream at the top of his lungs the whole time. Todd started taking him and he would watch him through the two way mirror, until the day he came home and said he couldn't do it. It was just too hard to watch. Then it was my turn. I stuck with it for a while. Then it became too much for me to watch. We finally quit. The director still remembers us. It was that traumatic for us all.

I always knew how much he loved music. Classical music soothes his soul. You could hit a key on our keyboard and pick which instrument the note would play in and he could tell you the instrument. This was when he was 3. So over the years we kept pushing him in. Pushing him in. (To music) Slowly slowly he could tolerate more and more.

In third grade his class performed the play the "Pied Piper of Hamlin". Daniel was in the chorus and he danced the Mariposa with the aforementioned Mary in my "What's the Difference" blog. He performed beautifully in the play. There were teachers lined up in the back of that room crying. Crying at his accomplishment. I would have been crying too if I hadn't been holding my breath the whole time. This was a huge step. We have it on tape. It's one of the moments you know the cosmic shift has happened.

In 4th grade he announced he would be in band next year. Everyone laughed. Really, in a meeting, everyone laughed. He was determined. I got him lessons, rented him the biggest shiniest baritone there is and he practiced, learned to read music. Well, maybe, I think he mostly plays by ear but he can read it. I knew that other kids on the spectrum, that I know to be much "higher functioning" than him didn't perform in concerts for years after they started their instruments. In 5th grade he performed in both concerts, flawlessly.

January 22 was his first concert of 6th grade. He arrived to the auditorium 45 minutes before the concert. Practiced, then sat in the audience for an HOUR holding a baritone and his music, sitting by all the other 6th graders with no adult by him. He sat there the whole time, quietly. He was attentive and waited his turn. Occasionally he would turn around and wave to his grandparents lined up in the audience. So proud of himself. Then the 6th graders filed onto the stage. He played all six songs. The grandparents sat there teary eyed, and proud. I was holding my breath like always. He looked so handsome in his required black pants and white button down shirt. Clothing he normally would never tolerate. But on this evening he was so proud of how he looked. He was part of the group. He played his heart out and came down and greeted us afterwards and thanked everyone for coming.
Writing this and remembering that it was only six years ago that he wouldn't even sit in the music room without screaming, it is an amazing transformation. For someone like Daniel it's almost as amazing and hopeful as Barack Obama becoming president. Maybe even more amazing. I wouldn't have believed either would have happened. I am so glad that they both did.

Tuesday, January 20, 2009

A New Era

Today is a day that we will tell our grand children about and they will tell theirs. Whatever your political beliefs, today is a momentous day in history. I am proud to say that both of my children watched the inauguration while in school today.

I heard one of the reporters post inauguration say, very poorly I might add, and I paraphrase, "the negative thing about today is that people may forget what it used to be like". I immediately said to my husband, "what does he want? To keep the segregation so we won't forget?" I am also happy to say that Todd came home for lunch and together we watched President Obama's speech. His response was "that wasn't what he meant". While this may be true, it got me thinking.

President Obama said, "Our challenges may be new. The instruments with which we meet them may be new. But those values upon which our success depends - hard work and honesty, courage and fair play, tolerance and curiosity, loyalty and patriotism - these things are old. These things are true. They have been the quiet force of progress throughout our history. What is demanded then is a return to these truths. What is required of us now is a new era of responsibility - a recognition, on the part of every American, that we have duties to ourselves, our nation, and the world, duties that we do not grudgingly accept but rather seize gladly, firm in the knowledge that there is nothing so satisfying to the spirit, so defining of our character, than giving our all to a difficult task."

It is my greatest hope that now that we have an African American president we won't become complacent and forget that there is a still a huge amount of bigotry and injustice in our country, not yet the world. I would hope that it isn't thought that will erase the years of slavery and segregation. Nothing can erase it. The only way we can not let people forget is by teaching our children. I imagine that some people wonder about teaching their children of these injustices. Is it better to bring it to their attention? I feel it is the best thing. Producing intelligent dialog with our children about the mistakes of the past is one way to teach them what to do in our future.

Last year my youngest (neurotypical) son and I went to the movies when we were "up north". We walked to the little movie theater down the block. I took him to "Hairspray" because he likes musicals and I thought he'd love the songs. I hadn't thought about the racial overtones of the movie. It was confusing him, so during the movie I would lean over and try to explain what was happening. I'd say things like "back in the 50's and 60's a white girl didn't date an African American", "back then they didn't have African American's on tv" etc etc. When the movie was over we walked outside into the cool clear evening which is so lovely in northern Michigan. My 7 year old turned and looked at me full of emotion and outrage and said, "do you mean to tell me that people couldn't be friends with each other because of the color of their skin??!!" He was so morally outraged and I was so proud.

We talked about it the whole way home. Mother and son strolling down a neighborhood street on vacation talking about racial injustice. Without meaning to I had opened a whole new world to him. One outside of his safe East Lansing boundaries. One that once you know it, you can't turn back on it. He did not like what he saw, and I was so thrilled that he didn't.

He came home from school today and asked me, again, if I dvr'd the inauguration. I told him I did. He said, "good, we watched it at school today, but some kids kept talking. I was concentrating on the speech because I was not about to miss one second of that speech!" They talked about past presidents in class, and due to his vast knowledge, his 3rd grade teacher had him answer most of the questions!
While I am so incredibly proud of our country, we need to remember to teach our children why this is so historic and in the words of President Obama, "why men and women and children of every race and every faith can join in celebration across this magnificent mall, and why a man whose father less than sixty years ago might not have been served at a local restaurant can now stand before you to take a most sacred oath." I am thankful for this reminder. At the beginning of a new era, we must not ever forget the past.

Sunday, January 18, 2009

What's the difference?

Something as big as the movie outing doesn't come around every day for us. Oddly, this weekend, the very next night, Daniel was invited to a birthday party. Let me preface this by saying, this is not exactly a common thing. It is one of the sad facts about being "different". I've written several times that Daniel has the best peers. Kids who really care about him. But when it comes to hanging out or going to parties, it doesn't quite extend that far. Some parents get very worked up over this. I understand it though. I really do. When you can barely carry on a conversation, it makes it tough.

I have found in talking to other parents with kids on the spectrum, it seems we have a higher than average rate of parties. I would say Daniel averages one a year. Not an outstanding showing, but I've found lots of kids who have NEVER been invited to a party. Perspective. Now one a year sounds outstanding, doesn't it? As the kids have gotten older it seems that a lot of parties revolve around sleep overs . This makes it even more difficult and it makes sense that he wouldn't go. Although one year his friend *Jim* invited him to a sleepover. I brought him to the earlier party portion then left before the sleep over part started. We weren't the only ones to get out before the overnight craziness began. Believe me, if the earlier part of the party showed what was to come, I wouldn't have wanted him there.

This invitation was from a girl who has been in Daniel's corner since 1st grade. I'll call her *Mary*. That's the grade that he started school with these kids. She is a beautiful, "popular" girl that everyone loves. She has always been a champion for everyone. For years they were always in the same class together. Put that way as a set up, of course, knowing that she would always help him when needed. That's just the kind of girl she is. Her mother told me a story yesterday about a few boys who had been teasing a girl on line. One called her a name. Something very hurtful. *Mary* told them all off and said that if they didn't apologize and stop doing things like that, they wouldn't be allowed to come to her party. One of the boys wasn't there.

The party was held at our community center. During the first half they all got together and swam for an hour, then went up to the party room. There were 30 kids invited. I was fearful of the noise level getting Daniel very upset during this portion of the party. (Not to mention the adults) So I stuck around. I'm the only parent, of course, who still does this. No one seems to pay much attention to it though. They are all used to Daniel having someone with him. It is accepted as "normal". I think I feel more awkward about it than anyone else.

The tables were set up in a huge rectangle. As with most 11 and 12 year olds the room was divided boys on one side, girls on the other. Except for Daniel he was on the "girl's side" I don't think he was really paying attention, he just sat down, then it all filled in around him. *Mary* ended up right next to him. The dad of the party jokingly said, "what are all of you boys, except Daniel too scared to sit by the girls?" This got a nervous laugh out of some of them. Then as expected out of pubescent boys some of them started throwing grapes. Daniel got a bit upset by this, because, you know, you aren't supposed to throw food. Clear cut rules like this are very upsetting to him when being disobeyed. I was on the other side of the room, trying to be as inconspicuous as possible. I was about to walk over to try and relax him, when I saw *Mary* lean over to Daniel and whisper something to him ever so quietly. I would bet I'm the only one in the room who even saw it. It was so sweet and thoughtful. Then she turned to the boys and said "stop throwing food NOW". I love this girl. The best part is, they stopped.

The kids hustled through their food and cake and ice cream, because the next portion was the "dance party". I wasn't aware of this part of the plan. She brought the ipod, the docking station, and a strobe light and a lighted ball that turns, sort of like a disco ball. The lights went out, the music turned on, "Louder", are the calls from the kids. I hold my breath and see what's going to happen next. "Louder, turn the music up", says another. I take in my breath a bit more. All of the girls sans one or two are in the middle of the room, giggling, dancing, and singing loudly to the music. Some of the boys are sort of circling the circle. Some are staying way back and watching. Daniel wanders over to the lights and for a few moments is captivated by the strobe effect. He wanders around, really not looking too different from the other boys his age. The sound doesn't seem to be bothering him, which is allowing me to start exhaling a bit. Then he walks over to the outside of the circle. I can see him watching them dance. Then. . . . he starts to dance. It was a bit goofy at times. But one of the BEST things about autism, is the joy of not caring what anyone thinks. I think we could all use a bit of that couldn't we? I whispered to the mom, "he is the definition of 'dance like nobody's watching'". She said, "he's got some moves". And there he was dancing with his peers. Completely and totally enjoying the music and the company. At that moment, not being any different from any other 12 year old in the room. It was beautiful.

After a while he came and sat down by me and said, "I'm kind of tired from all that dancing". The other parents were starting to show up, so we decided to go. He yelled out, "see ya later everybody", they all yelled "bye Daniel, we're so glad you came". He thanked *Mary* for inviting him, her parents too. Then we walked out into the cold cold night.

The whole way home I was smiling. I was also realizing that there may be a lot more dances in our future with me lurking in the shadows, making sure he doesn't go into sensory overload. Passing myself off as just a chaperone. The other parents there will also be making sure their kids are behaving as they should be, and keeping their eyes on them while they enjoy the dance. We'll both be watching them grow and mature. There really isn't much difference.

Saturday, January 17, 2009

Positive Reinforcement

Yesterday was a big day. Besides the fact that at 6:30 am my husband, Todd, came back into our room and whispered, "school's cancelled, I'll turn off your alarm and the kid's alarms". What a guy. Ahhhhh stay in bed and sleep. One of my favorite things to do! Which by the way, Zachary tells people. He literally says, "my mom loves to sleep!" What's true is true.

The day started out well. Since the kids get Monday off for MLK day, we now have a four day weekend. It wasn't long before I realized that there was a possibility of Daniel missing something great. Daniel is in the class that calls itself the T.O.A.D.S. team. (Team of Awesomely Diverse Students) It is a regular general education class. They team teach so it is two classes each with a teacher, Mrs. Ballard and Mrs Scott. They mix up the classes for groups, they are sometimes all together. It is a very fluid classroom. It is the perfect place for Daniel and his teachers completely "get him". They had planned a special outing for all of the kids who achieved a 3 or 4 (out of 1, 2, 3, 4) on their citizenship grade on their report cards. Daniel had a 3 on his report card. This is the breakdown for a 3:
  • usually shows kind and respectful behavior towards others.
  • usually uses self-control when making choices
  • usually operates as a positive member of our T.O.A.D.S team.

I was very proud of Daniel for getting a 3. I think you can agree for a kid on the autistic spectrum, achieving the above list is much more difficult for him than a general ed student. He works HARD. We stress the importance of these things at home, probably even more than the academics for him, although we work hard on that too.

The outing was going to a movie with the teachers. Isn't that just a wonderful, positive, way to reward students who do the RIGHT thing? Positive reinforcement. I love it. The parents drop them off at 4:30 and pick them up at the theater at 6:30. I had sat Daniel down and explained why he earned this special time. I really don't think I've ever seen him so proud. Further evidence of how hard he works at his self control. But this is big for him. Other kids get dropped off at the theater and picked up by their parents all the time. This is not something he has ever done, of course. He isn't ready for that developmentally. I went and talked to the teachers about how they felt with taking him to the movies on their own. I offered to go, but really, I felt it would be a MUCH bigger deal if he went with them, alone. They were fine with it. We exchanged cell numbers etc. His para pro wasn't going to be there, so I suggested one of them sit next to him. He tends to start verbalizing and doing his echoalia repeating during movies. So I felt he might need some quiet reminders to keep it down. He knows he should, he just forgets. He really can't follow the movies, the language is too much information, so part way through he starts to drift off. He loves the experience though, and he loves that he gets popcorn which he doesn't get otherwise, so it's one of his favorite things to do. We were all set.

Then the cold came. Bone chilling cold. The schools are all closed. I held my breath most of the morning until I received the email telling me the outing was still on. See you at 4:30. Hurray!

I dropped Daniel off at 4:30. He saw Mrs. Scott and said "Hi Mrs. Scott, where is my popcorn?" lol. See, I told you that is why he goes! But I knew he'd do a great job. When his peers are around he has a way of really pulling it all together. He wants to fit in. He tries really really hard. So I left him. It was tough, I have to admit it. I wanted to take his hand and lead him in and sit by him and help him through it all. But I turned around and walked out the door, clutching my Blackberry, with the teachers numbers freshly entered.

Todd and I took Zachary out to dinner at the location of his choice. Mexican was the suggestion (I love that kid) so we had dinner for three. It was nice. He got a special time with mom and dad, so it worked for everyone. I was a bit worried because we weren't picking him up until 6:30. He usually eats at 5:30, and when he's hungry he doesn't do well. I had slipped Mrs Scott a small bag of M & M's and told her to bring it out half way through the movie. I knew the popcorn would be gone before the lights went down. I was hoping it would help him get through.

I ran into the theater at 6:30 (sharp!) and found the group waiting. It was PACKED in there. Apparently everyone thought a movie on a 20 below day sounded like the right thing to do. Mrs. Scott looked and me and said, "he did phenomenal". He was so quiet, it was incredible. She looked at Daniel and said, "Daniel, I'd take you to a movie anytime!" Then she leaned over to me and said that after the movie was over, Daniel looked at Mrs. Ballard and said, "Mrs. Ballard you did a great job staying quiet during the movie!" Positive reinforcement, you gotta love it!

Wednesday, January 14, 2009

Adaptive PE

When Daniel was younger, 1st and 2nd grade his "specials" were really difficult. The "specials" in our school district are art, music and gym. They go to art once a week for 1 hour. Music and gym are twice a week for 30 min each (I think). So this is 3 hours a week total.

Daniel uses a visual schedule every day. The schedule is stored in a clip board size board system. His schedule is lined up on it each day. If the routine is changed there is a "change" sign alerting him. He doesn't like to see the change sign, but he deals with it. Years ago this visual schedule (which he still uses) helped him TREMENDOUSLY. He is a visual guy and he knows his schedule. To this day if you say "Daniel did you go to your friendship group today?" He'd say "no, mom that is on Tuesday, during lunch, today is Monday." He has it down. But we always seemed to run into a problem with the specials. He would get upset before going to whichever special was next. I finally got the bright idea that, it just says Phys. Ed on his schedule. He doesn't know if he is going to play kickball, basketball, soccer. It's too unpredictable. So, probably much to his teacher's chagrin, I asked that when he gets to whatever special it is they have it posted somewhere, it could be on the wall, in art at his desk, a brief list of what they are going to be doing that day. Guess, what? It worked! He doesn't need this anymore, but it helped him transition until he began to use his own prediction skills (a skill that was being worded on in speech!) See how it's all intertwined?

Gym was hard, well, so was music, but today, I'm focusing on gym. He just couldn't do the things other kids were doing. It was frustrating him. Wouldn't it frustrate you if everyone else in the room is doing something and you don't understand? I can't remember where I heard of Adaptive PE, I'm sure it was from a parent. It helps them improve those skills. Coordination, running, serving a volleyball everything. Whatever it is. I asked for an Adaptive PE evaluation. "No, he doesn't need that." Bicker, bicker back and forth. I finally said, "well just evaluate him, then that will determine if he needs it, won't it?" He couldn't pump on a swing, couldn't ride a bike (but you've read that) most anything his peers could do. Why oh why oh why would they not think he needed it? Besides the obvious, of course. But that just may be me being a bit cynical? I have to give credit where it is due. They did it, with a pretty minor amount of arm twisting. You'll never guess what internet??? He qualified. Shocking. I know. It is really hard for me not to gloat in these situations. But I try to restrain myself. Of course I'm not happy that he NEEDS the service, it means he's behind, but you see, I already knew that, hence me asking. It just proves me being right, which I enjoy very much.
Daniel has been receiving these Adaptive PE services now for what we think is in his 5th year. Todd and I discussed this last night and neither of us could really remember. I think he started in 2nd grade and now he would be in his 5th year. Somewhere in there the instructor retired and a new young fresh out of college gal came in. This is one of those situations where you are terrified. It's going to be upsetting to him etc etc. This change was one of the best ever. She has some gung ho! When she laid out the goals after 4th grade, I actually said, "you're kidding right?" They were VERY aggressive. In a good way. It has been one of the top 5 best things we've ever done for Daniel. I would like you to read a passage she just sent me in an email. We are having a "team Daniel" meeting on Tuesday, she can't be there, so she sent this as an update.

I would love to share that Daniel is doing awesome for me and in PE. I make his PE time a couple times a month. (meaning she shows up at his PE to see how he is doing and incorporates it into her instruction time with him. Usually Adaptive PE is in addition to PE) The Monday before Winter Break he had a Sub para and a Sub PE teacher. I was there and they played line soccer. Daniel was number 13 (the last number that would be called). He had to play goalie (with 10 other classmates) while he was waiting his turn to go out and play soccer. He did awesome. After 15 minutes of waiting for his turn, I asked him if he wanted to keep waiting for his turn or ride bike. (when the activity is too much or he has had enough he rides an exercise bike, which he loves.) HE wanted to get his turn, and then ride bike. While he was out on the field during his turn he was excited and several classmates were encouraging him to kick the ball, chase the ball, etc. I thought that on a day with two subs Daniel did so well.... and HE wanted to play!!!! YEAH!!!!!

Now doesn't that just make you smile?? I feel so blessed by the support Daniel has. His peers, his instructors. He has thrived. He is coming along, little by little day after day. We WORK TOGETHER to make this happen. Not at a small price. This is my priority. I don't work outside the home, even though my children are in school all day. I am a college graduate with a decent earnings potential , but I am the puppet master behind the scenes making sure things are all happening when and where they are supposed to. I keep track of it all and keep coming up with new ways to solve problems right along side the professionals. It is my job. I do it well. At times like this it makes it all worth it.

Monday, January 12, 2009

The Bedroom

This is a photo of one small area of Daniel in his room. Over Christmas break we added the mirror to the back of the dresser. We've had the mirror for, well, longer than Daniel's been alive. But since we have been in this house, it's been under the bed in the spare bedroom. In place of the mirror he had a poster of Thomas the Tank Engine, James and Percy. Yea. Time for that to have been gone, long ago. He still loves those trains, but we wanted to take down the poster, to well, help him have a (bit) more of an age appropriate room. The kid loves a mirror more than anything. So we thought that was a good compromise. He sits in front of his closet door, which is mirrored and imitates all the characters he knows. He loves Stromboli in Pinocchio and will quote the whole scene of Stromboli yelling at Pinocchio ending with "you will make good fire wood!". The kid does AMAZING voice impersonations. I've always said, Jim Carrey should watch his back.

Over break we convinced him that having a mirror would be the most wonderful thing EVER! He agreed! Then came the (nearly) impossible task of getting it attached to his dresser. Impossible because, well, please reference the dresser in the photo. This is after we, ahem, "cleared" it off. Yes, this is after we got rid of a bunch of his, um, collections. Not got rid, just moved to a less visible area? It is serious business, this dresser. When he gets anything he immediately finds a spot, "on the dresser". Everything on the dresser has a very specific location. Because of this, I rarely touch anything on it. Because of this, everything tends to get a wee bit dusty. OK, it's a disaster. And, as I'm realizing writing this blog, I realize as usual I get to the point that I have to get to myself worked up where I can face the music and go tackle that room! He used to get really upset. Now he just leaves the room, or I do it while he's gone. Then I (attempt) to put things back where they should be. I am never close. He comes in when I'm finished and puts everything exactly back where it should be. Then he is actually happy it's clean. I do not do this often enough. But it's nice when it happens.

So when the mirror was attached we had to clear the dresser. This was quite a process. It also turned into cleaning behind the ridiculously heavy dresser, bolting the mirror on, dusting all the crap, I mean, treasures on top of it and putting it all back. AS SOON AS POSSIBLE.

You may notice that hanging from the mirror is Pinocchio himself. It is an actual hand carved marionette. This is what he asked for from Santa last year, "A Pinocchio puppet carved out of wood". Um yea. No problem for Santa right? You notice he is now prominently displayed. Santa was working ebay for weeks on that one! I believe I heard he even threw himself on the mercy of a seller trying to get it. But I digress. The reflection in the mirror also shows Daniel's collection of cuckoo clocks. This also is a Pinocchio fascination. He loves the beginning of that movie when Jiminey Cricket crawls into those clocks that Gepetto so lovingly carved, along with his puppet Pinocchio. It's funny, someone once compared Zachary to Jiminey Cricket. Forever the conscious of his school mates, whispering the right thing to do in their ears. Does that make Daniel Pinocchio? With Zachary guiding him on the straight and narrow path, helping him learn the ways of the world? Could be. Could be.

Sunday, January 11, 2009

Spectrum Siblings

Just a quick note to mention that I added a new blog to my list. It is called Spectrum Siblings. I haven't read through all of it, but I've read all of them so far this year. He is planning on posting every day, which will be a stunning achievement! The tag line to this blog is "An Aspie Teen Exploring How to Cope, Love and Thrive on the autistic spectrum".

I plan on reading him regularly to get advice! Check it out. He commented on this blog (I believe it was him) and said his brother talks backwards sometimes. (as in the poem and posting of Secret Abilities) Thanks for that. I'd love to know more. I have honestly not come across other kids on the spectrum who do this. . . .

I found this blog through Mama Mara's blog which I also read and comment on regularly. She said we'd all want to bow down and kiss her ring for linking us to Spectrum Siblings and well, I think she's right!!!

Wednesday, January 7, 2009

There's an Elephant in my Living Room!

I was going to start by saying "with autism", but I'm changing that to "with Daniel". Autism is certainly not all of who he is. It does explain some of his well, um, quirks? That's such an understatement, but I'm sticking with it.

Anyway, "with Daniel" he kind of goes along evenly and then makes a huge jump developmentally. I see Zachary as maybe, everyday, he develops a little here, a little there. So it is almost, almost, indecipherable if you are around him every day. With Daniel it's same same same same same then WHAM, some huge change cosmic shift occurs. I think we are in the middle of a shift. And let me tell ya, it feels GOOD.

Starting Sunday, (it's usually so big I can tell you the time) Daniel and Zachary have PLAYED together every single day. I mentioned the fort regarding the I Spy book. That was the first day. Then while Zachary was at basketball practice. Daniel practiced his baritone. Zach got home and got a dessert. Daniel was sort of hanging around him, which is unusual. Then he says, (totally unprompted) "Zachary, when you are finished with that, do you want to play hide and seek?"

Zachary's neck snapped around to look at me so fast, he smiled a little and said, "sure".

And I'll be damned they played hide and seek. I suggested they lay out ground rules of where they can hide as in the basement and main floor, not upstairs. They did. Daniel even made a suggestion. Zachary hid first, Daniel looked, I joined in the looking a bit, because Daniel just doesn't really look very well, and Zachary is awesome at hiding! He's like that guy who could fold himself up into a little box, see reference photo!

They went back and forth. I whispered to Zach to let Daniel think he couldn't see him for a bit, because he is the antithesis of a good hider. It's like trying to hide an elephant in your living room. They had FUN. Then Daniel suggested tag. "Tag?" said Zachary. "How are we going to do that?"

Then Daniel just starts chasing him, and laughing. He's not chasing him to scream at him or to get under my skin. They are laughing and having fun. Weird. Then, they went in the fort, again. Now these things may have happened here and there. But three days in a row, with Daniel initiating the play and suggesting what they do? That is new. And the best part is they are both having fun! Zachary would do anything in the world for Daniel and the fact that Daniel is seeking him out is pleasing him to no end.
Tonight Zachary was at guitar. I was loading the dishwasher and washing up the knives and a few pans etc. Daniel said, "I'm going to watch you wash the dishes". Then proceeded to chat with me the whole time? Just hung out and pleasantly chatted. Weird. Weird in a wonderful way. Weird, like, where did this come from? You NEVER do this.

As I said, he doesn't slightly move into anything, he's either there or he isn't and when he is there, you certainly know it. Kind of like an elephant in your living room.

Tuesday, January 6, 2009

Visual Memory

A few posts ago I replayed the story of Daniel's "Secret Ability" of reciting a poem backwards. I have told many others this story including a few speech paths that I know. I was pleased (for some strange reason) to hear the amazement in their response and after a lot of spouting of reasons for this, they all come back to the same thing. "We don't know anything about the brain." (In that we know some, but there is so much that we don't know.)

I have always found Daniel's brain fascinating. Maybe it's because I love puzzles and am obsessed with them. I play Scrabble, Word Twist, and Scramble, obsessively on Facebook. I'll pick up any Suduku I see laying around, as well as a cross word. I like figuring things out. Maybe, besides the fact that Daniel is, ya know, my flesh and blood, that is one of the reasons I'm always trying to "figure him out". Will I ever? Probably not completely. Whenever you figure something out with him he throws out something new for you to wrestle around with for a while.

For that reason I've been watching the visual memory thing closer since the backwards poem moment. Here are some findings. First the cable guy was here yesterday (wait that has been every day for 3 days in a row and approximately the 1 millionth time since September, it is officially my part time job, waiting for the cable guy) Anyway, when he was "fixing" the internet everything got moved around. Upon Daniel's getting home from school, he unpacks his backpack and spreads it all over the family room floor (just to make me nuts) makes his snack, get's his water, goes to the basement and goes online. He ran upstairs and said, "mom, the internet explorer icon is GONE!"

"Gone?"I said.

"yes, it's missing", replies Daniel.

First, this is amazing communication. Eight months ago he would have just started screaming in the basement, followed by me running down to see if someone was stabbing him with a butcher knife from the sound of his panic! So I was proud of his calm observation. I was panicked inside thinking what did the cable guy do now? When I looked at the screen I pointed it out, "see Daniel, it's over here". "Oh thank you mom!!" he says happily. This also shows his rigidness that he couldn't just look over the screen and find it. It wasn't where it was supposed to be for goodness sake!!! So I stood there for a minute to see what he would do. He moved the internet explorer icon back to where it should be, then he proceeded to move every other icon on the page back where they should be. All 49 of them. I counted. Seven rows of seven, and if my 3rd grade math is serving me well, that's an array demonstrating 49. Does he use all these icons? Um no. I don't even know what 75% of them are for, but he knew where each one belonged! Interesting.

The other "memory" example that came up relates to Zachary built a fort in our basement with his friend this weekend. He invited Daniel in on Sunday night. I sort of made a big deal about Zachary being kind enough to share this wonderful fort. Daniel thought this was awesome. The funny thing is Zachary would usually kill to have Daniel interact with him. This realization just seems to be dawning on Daniel. He is communicating much more. So they spent about 40 minutes in the fort. It was stocked with flashlights, pillows and books. One of the books was "I Spy Christmas" They were reading through this book and finding things. I was smiling to myself thinking that Daniel knows where EVERYTHING in that book is. This gave me a flashback. Danie was 3, we were driving to preschool. He was upset, crying (ok screaming) ya know, the usual ride to preschool in those days. I'm hugely pregnant. Nightmare. I'm trying to calm him. I said, "let's sing a song". He said, "no, I Spy Christmas", and started reciting the riddles. I looked in the rear view mirror and he was not only reciting the riddles but pointing into the air at where the things were on "the page". There was no page in front of him because THERE WAS NO BOOK IN FRONT OF HIM. But he could obviously see the book like it was. So he was pointing to where they were on it. This freaked me out at the time, because well, he was 3 and at the time he hadn't yet been labeled as autistic.

My final example is of Christmas. Everyone has, of course, been asking Daniel what he got for Christmas. He would sort of sit there unsure of what to say and then say "bunny slippers". Which he did get by the way. As shown here. But he couldn't come up with anything else. This

was sort of bothering me because he got AWESOME things, an electric train set, a Wii, as I mentioned, it goes on and on. I'll guess we had 15 to 20 things on the list. So before school yesterday I sat down with him and we wrote it all down. I sent it to school to share with his para and his circle of friends group with the social worker. It was a cheat sheet so to speak, so he wouldn't sit there in group and say he only got bunny slippers! Last night he had another social group with a speech pathologist. So I realized on the way, I should have brought another list. So I just said. "Daniel when you talk about Christmas, what will you say?" Then he said, "I got an electric train set, a Wii. . . .. etc etc. The list we wrote out that morning. IN ORDER. Weird. I mean we know it is "helpful for him to have visual strategies". But this seems a little beyond that don't ya think?

So what do you think? Photographic memory? Have you ever read Temple Grandins book, "Thinking in Pictures??". I have, and I've seen her speak at conferences, twice. What are your thoughts internet? (ok I stole that line from another blog I read,, but I've giving credit) Let me know. I'd love to figure it out.

Friday, January 2, 2009

Wii Wish You a Merry Christmas. . .

We had a wonderful Christmas. The boys were very pleased with their gifts, Todd and I were pleased with our gifts. I felt very pleased with the gifts we gave. Even to the really tough Grandpas. Everyone was happy! We helped buy gifts for the families who needed it in our community and shopped for them. It's what the holidays are all about. AND we all stayed away from the plague. (Knock knock) It's all good. We are truly blessed and I mean that 100%.

Perhaps one of the biggest surprises this year was Todd's brother and his wife gave our family a Wii, and a controller, AND Rock Band. What a wonderful gift! We were very overwhelmed by their generosity. As expected Todd and his brother took over the Wii Christmas night and played Rock Band until they had to pry their eyelids open with toothpicks. The Rockin' continued into the next day with stops in between of Zachary getting on board and playing the guitar and the drums. The drums were frustrating at first, but he picked it up and then he REALLY started getting into it. Occasionally even Daniel would come in and do the vocals! It's amazing. This is what makes it a truly wonderful gift. It is something for the whole family. And believe it or not, the whole family is participating. This is what separates the Wii from other gaming systems. It not only brings families together but it gets your butt imprint off of the sofa at the same time! Genius.

Today we bowled. All four of us. Together. FOR THREE GAMES. That bears repeating. We bowled 3 games together as a family. We didn't spend any money (well Mark and Amy did, but there again lies the genius), everyone was laughing and having fun. Well, actually after Zachary lost a game he left for a bit but he came back on his own and tried again. It was a minor glitch. I was thrilled because Daniel was 1. happy 2. engaged with us 3. kicking everyone's butt. Yup. Daniel had a 195 in his second game. A 163, and then fell a bit to the 140's. He got a lot of splits in the last game. But he was still enjoying himself and overall he was the winner, by far. He looked at me when we were all laughing and said, "mom am I cracking you up?" (he finally understands that this does not mean the person will crack up into small pieces and fall a part, literally. For years he would get upset when people would say that!) So thanks Uncle Mark and Aunt Amy, not only for your generosity, but for an inspiring gift that is helping Daniel play with his family. Wii wish you a Merry Christmas, and a Happy New Year!