Thursday, October 20, 2011

Dancing, dancing, dancing....Dancing machine....

Friday night Daniel was invited to an all abilities dance sponsored by CADSA (Capitol Area Down Syndrome Association).  This was the second annual dance in recognition of Down Syndrome awareness month, but the first time for Daniel to attend!   My friend Amy from Life According to Emma and Joe blog was one of the coordinators and she did a fantastic job!  It was a Mardi Gras theme, which is perfect for Daniel, purple is involved! 

A few nights before the dance I mentioned to Todd that maybe we should ask Daniel if he knows how to slow dance with another person.  I thought it may come up, and wanted to give him a quick tutorial.  The night before the dance, Todd came down from Daniel's room with a big smile on his face.  He had asked him if he knew how to slow dance.  Daniel's response was "sure" and stood up with his hands up, moving in super slow motion.  Literally, dancing slowly.  I wish I had a video of Todd showing me this.  I was laughing until I cried.  It was honestly the most adorable, sweet thing.  But Todd showed him how to simply put your hands on a girls waist and sort of shuffle side to side to the music.  I will never look at slow dancing the same way again.

One thing that they did a great job with is just getting the word out! They contacted classrooms all over to get the dance advertised to all ages and all abilities.  The teachers were wonderful and kept telling the kids about it and passed out fliers to bring home.  The result was a wide variety of kids.   Kudos!  That is a lot of work.  The other thing Amy decided to do was find volunteers to chaperon.  I decided to ask our friend Amanda, who was one of Daniel's fabulous swim coaches last spring.  We continued to work with her throughout the summer.  She is a great swimmer and has that gentle knack to get Daniel to do things that I never ever could.  In short, she is wonderful. 

Amanda agreed to chaperon.  Amy's idea was, especially for the older kids, for everyone to have dance partners that AREN'T their parents.  For the most part, I think most of the kids are happy to be out dancing as a group, and just having fun.  I wasn't really prepared for the transformation that happened because of this set up.  Amanda was obviously a partner for Daniel (and others if they needed it).  I brought Daniel to the dance, which was at our local community center.  (close to our house!) not sure what to expect.  The invitation said "Sunday best", so I made Daniel change into a collared shirt from his usual t shirt.  He put on a purple.  I must admit, this was a happy accident.  I hadn't connected the Mardi Gras to purple at the time, but he looked good. 

We arrived to the community center, and waited in line to pay.  The music was filtering down the hall.  Daniel was excited.  I could tell by the way he was shifting his weight back and forth, using his now 6 ft size to peer over the top of people into the room.  When the line wasn't moving (at all) I told Daniel to go check out the room while I waited to pay.  At that moment I saw Amanda walk by the door dressed to the nines in a sparkly black dress.  She looked amazing!  She is a beautiful girl, but we usually see her with a swim cap on and Speedo swim suit.  It's just not the same! 

After Daniel found her they came out to say hello to me.  By the look on Daniel's face I could tell that he was feeling as though he hit the lottery BIG TIME! He  LOVES a pretty girl.  Autism or not.  Those hormones have kicked into high gear!  He (as of today) is a fifteen year old high schooler. (HAPPY BIRTHDAY DANIEL!!!)  Any man would be thrilled to have this girl paying attention to only you all night, but for this night, it was Daniel and he was beyond thrilled.  We were off to a good start. 

Amy found me and told me that she had a conversation with Amanda and they felt fine with me leaving for a few hours.  I thought I'd stay for a while, and immediately began talking to parents staying a very respectable distance from Daniel ie the opposite side of the room.  They immediately hit the dance floor.  I honestly wasn't paying much attention to them, but would occasionally glance their way, saw him talking to her, dancing, getting water and a snack, all the usual dance activities. 

I had a good time connecting to some parents that I don't know very well and gathered some good high school information.  I talked to the dad of another kid on the swim team.  A hope we have for Daniel!  It was great.  By that time I had been there for over an hour and decided I might as well just STAY.  So I did.  I went to talk to Amy's husband Chris (still far away from my teenager).  When YMCA came over the speakers.  I don't know why, but that song has always gotten people out on the floor.  Every wedding, dance, and when I was a kid, the roller skating rink.  I clearly remember that song coming on and everyone yelling and getting out to skate around that rink arms in the air spelling out Y M C A....It's fun to stay at the Y M C still has the same draw.  Maybe it's because we can all do that "dance?"  Not sure, but I was surprised when I saw Daniel and Amanda sitting at a round table chatting.  From afar it looked rather "normal" although I'm sure he was repeating lines from Toy Story or Sesame Street.  She was listening intently, nodding and smiling.  (love her) I walked over and said "Daniel YMCA is on, aren't you going to dance?"  He turned to me slowly and gave me the most evil look.  I kind of backed up and said "I'm sorry, am I interrupting?"  He replied, in a growly teenage voice, "YES you are interrupting me....." Amanda had to look away because she started laughing.  I was surprised and well, a little happy to see him asserting independence.  But WOW.  Really?  How funny is that?!  But they did hit the floor, pictures below. 

I backed away slowly and let him reclaim his space.  Hiding in the corner.  He did come charging up to me a while later pushing his watch under my nose saying "look at my watch.  What does it say? It says it is 8:17".  For this reason alone, I'm glad I stayed.  I knew this meant that he usually gets in the shower at 8:15 pm.  I had forgotten to tell him we'd be out later that that and it was "OK".  If I give him a heads up now he is OK with it although he might get slightly agitated.  I'm not sure how stressed he would have gotten if I wasn't there to interpret this and assure him that it was OK and it was a Friday night and staying out late that night was an exception.  He proceeded with the evening. 

Later while I was talking to someone I heard a slow song start.  I turned around to see Daniel and Amanda dancing together, just as Todd had instructed him.  I couldn't believe it.  And he looked SO PROUD. 

My heartfelt thanks go out to Amy and Amanda for helping make it a memorable and amazing evening for Daniel!  I know it wasn't about him, but knowing that the time you spent planning something or volunteering your time touches each person individually hopefully makes all of the time worth it!  We look forward to next year and what will come from it.  Maybe next time I can leave, and not cramp Daniel's style so much!

Daniel and Amanda

during the raffle, Amanda paying attention and Daniel catching me with the camera

Slow dancing.....
A little YMCA, once he was finished giving me the stink eye.....

Thursday, October 13, 2011

Fair Practices?

We continue to struggle, particularly with one teacher at the high school about properly accommodating Daniel's tests and quizzes.  She has made SOME of the accommodations regarding classwork and notes, and now is going a bit further with the tests after our IEP (only after 2 tests have already been taken and failed).  One of the accommodations I am requesting (which has always been done in the past in every dog gone class) I am still getting no response about it as of 8:00 tonight, the night before yet another quiz.

We had a discussion, led by the Special Education Director, explaining some of the basics of autism, which appear to be lost on these people.  I am so fortunate to have the Sped Dir explaining the nuances of autism and why it is necessary for him to be tested differently.  The AI teacher consultant also looked at the tests and said they were confusing to HER not yet what he would see?  So what is the problem you ask?  I don't know.  There seems to be a disconnect in what she will bend on.  Possibly she feels, it is giving him too much.  He "should" be able to give her the information if he has "truly" learned it? Despite us explaining that people with autism often understand the information, but have problems "outputting" the information.   I have watched her shake her head, put it down, and roll her eyes.  She doesn't get it.  She feels we are the problem.  When she started the sentence, the dreaded sentence, "I can't do this for one.....child" the answer I gave was, "that's why you have a special ed teacher and an autism consultant to help with these accommodations.  I am still being ignored.  I hate to be ignored.  I hate that Daniel is failing these tests and quizzes.  I hope that he won't become so frustrated he starts acting out.  I hope he doesn't start feeling bad about himself.  I hope it doesn't hurt his self esteem. 

When I quiz him on his flash cards, he KNOWS some of this stuff.  He is getting some of it. I'm not saying he has a complete working knowledge of the 9th grade history.   Can we ask more?  I could take the easy way out, but I, once again, need to get my point across.  I can be as stubborn as she is.  This is MY CHILD.  I am past being sad and crying and frustrated. I'm mad.

I came across this comic on Facebook today.  It's official title is No Animal Left Behind.  It very succinctly shows my feelings regarding accommodating work for our kids with autism.  We can't all be tested the same.  Asking him to perform on these quizzes and tests the same as all of the other kids is as ridiculous as asking that elephant to climb a tree. 

Wednesday, October 12, 2011

A Fulfilling Life

Saturday I brought Daniel to his first ever Kiwanis bowling league.  He has always enjoyed bowling as long as the bumpers are up.   He would be angered by the ball rolling down the gutter, not even hitting one pin.  The bumpers make it more fun, and more successful. 

I have heard about this league for a few years.  For some reason I have never been able to get our act in gear to get there.  I would forget about it then it would have started a few weeks before.  I hadn't realized that you could just GO. Even weeks into the season.   I now have some mom guilt that I didn't get it done before.  But you do what you CAN right?  I keep telling myself that.  YOU DO WHAT YOU CAN WHEN YOU CAN.

Apparently, this year, I can.  We had to get ourselves around a bit earlier than normal on a Saturday morning, but it was worth it.  We arrived to the new (to us) bowling alley on the other side of town.  There were lines and paperwork and confusion, but Daniel handled it like a champion.  He enjoyed checking out what this new bowling alley had to offer.  The most intriguing thing being the "Wowie Zowie gumball machine".  You put in two quarters and the machine releases a (jawbreaker, but Daniel continues to call it a gum ball, he would never actually eat either of these things) and it goes through sets of tracks and gears before it is released.  This is heaven on earth to Daniel.  I even found a video on you tube.  You tube has everything!

He knew lots of kids there from his summer camp, and other various things around the city.  He was especially excited because Adam (changed the name)  came and they got to bowl together.  Adam is 2 years older than Daniel and I've always thought they were a good match.  He also has autism but it manifests in different ways.  Daniel tends to just talk in statements and quotes and talk AT you not asking questions.  Adam tends to ask  mostly questions . . .  non stop.  This seems to work because they are direct questions and Daniel can answer them.  It makes for a good combination and I've always felt a real friendship could emerge.  We have never actually been able to get them together much because both families have so many challenges, it never seems to happen.  My hope is that this every other week bowling is a chance for them to spend more and more time together. 

Daniel is nearly 15.  The future is on our mind more than ever around here.  Where will he fit in?  What will he do?  We have spent so much of his schooling with him only in general ed.  His general ed peers have been (mostly) wonderful.  He occasionally gets included in parties and functions, but lets face it, it's once or twice a year.  He used to walk with kids and ride the bus with them.  But as his peers have gotten older, their ability for independence has put an even larger gap between them and Daniel.  There isn't anything wrong with it.  It is what it is. 

This look to the future has caused a shift in my planning that I hadn't anticipated.  I have been taught (ok I feel like it's kind of beat into you) inclusion, inclusion, general ed general ed into my head.  But what I have found is that while Daniel has been off on this general ed track, there is a whole community and friendship that has developed and he has not been a part of it.   At the beginning of the school year Daniel requested to take the bus to school.  For the first time since 3rd grade I added "special transportation" back into his IEP.  The bus comes to our house and picks him up.  He LOVES it.  He says his friends are on the bus.  There are 5 kids on it.  It's not too crazy.  He doesn't have to walk to a bus stop.  It's a good thing. For ALL of us.   I find myself wondering what I was fighting.  Who was it good for that he was on the general education bus, him or me?  Actually at one point he and Zachary took it together so that was a convenience.  Kids got to see him doing the same things as him.  That is always a good thing.  But maybe just maybe, we can take the best of both worlds for Daniel.  He went to a special ed. summer camp.  His swimming includes a lot of these same kids.  He is socializing more.  He is, well.  Happier.  He was on cloud nine talking about bowling last weekend.  He shared it with his teachers.  He saw Adam at school and they talked about bowling.  He's excited.  When Zachary asked me if he could go bowling too I said "no, it isn't for you" which surprised him.  But you know what?  It felt good to tell him it wasn't for him.  I never felt the tiniest bit self conscious for Daniel at the bowling alley, even when he got upset because our lane was breaking and he hit himself in the head and bit his hand.  I solved the problem and we moved on.  It felt good that people understood his frustration and all the parents had been there before.  It felt even better watching Daniel literally jump for joy at his strike and have everyone CHEERING for him, high fiving, and fist bumping for him.  I'm a little ticked off I didn't give him this gift earlier.  But I'm thankful we have found it now. 

I  just sent an email to the boys swim coach at the high school about Daniel being included on the team.  (At Daniel's request).  Like I said, best of both worlds.  Isn't THAT what we want for our kids.  To be happy, and be able to navigate the world.  To have it ALL.  To enjoy life and fit in with those that he feels comfortable with?  To give them opportunities then let them see what they love?   While I have of course always KNOWN it, the push into general ed has been good for him.  I think it has challenged him in so many ways, but he has risen to that challenge over and over.  But he gets confused by the chatter of those kids, he can't follow along with their discussions very well.  I know that in four years, those kids will all be leaving for college.  Where will that leave Daniel? I feel very at peace with us balancing between general education and special education.   We need to make ALL opportunities available to him, whether or not they are what we originally envisioned for him as a baby.  I've had people ask me, where he could work? can he go to college? will he get married?  Honestly, do you really know this about ANY child?   I can't say that I have these answers, but I know what I want for both of my kids is happiness and a fulfilling, independent life.  That can take place in many different ways.  We all need a little bumper to help us every now and then.