Friday, May 18, 2012

Band Concert

I am having a hard time starting this blog today. It is only because I have so much going around in my head I don't know where to start.  So I'm starting by saying I don't know where to start..hoping the keys will take me in the right direction.  I guess I'll start with the word START.  Here in Michigan START stands for the STatewise Autism Resources and Training.  It is a huge grant through Grand Valley State University.  I have been to many many START trainings.  It isn't usually parents, but all of those people on your team out there working with your child. I  like to know what they are learning and what they are supposed to be doing, so I go too.  It is also very helpful for me to improve how I parent.  It isn't meant for that, but I have gotten a LOT out of it. 

Last fall I attended a LINKS training.  Here is a bit of an explanation of what it is.  And what it is, is actually a Godsend.  Truly.  It is simple in concept, but not in procedure.  It is also the most win-win in education that I have ever seen.  A truly win-win situation doesn't come up very often.  The kids on the spectrum obviously get a ton out of it, but the amazing thing is so do the General Ed kids who are "linked" up with them.  It is so simple in concept it is genius.  Hearing Maureen Ziegler talk about it in training is mesmerizing.  Truly. Her stories of how LINKS came to be are so interesting I could listen to them ALL day long.  I hope you follow the link (ha ha) and read up a bit.  '

In January Daniel's high school got this program in it's initial stages.  Daniel has 5 LINKS with him every day.  It didn't work out schedule wise for him to have one first hour, but he does 2nd through 6th.  He has a different general ed student with him each hour. They sign up for a LINKS class, do on line work but in place of going to a class they go to DANIEL's class with him.  This does NOT take the place of a para pro.  Repeat, does NOT.  They are there for socializing and modeling.  See, kids listen to kids.  Not adults.  Adults can't act like kids.  They can't teach kids how to be kids.  They especially (we have found) can't model to a kid with ASD how to act like a teenager.  This has been modeled all over our great state with astounding results.  The Gen ed kids get as much or more out of it than the ASD kids.  And the better part? When you start getting kids to be LINKS who are struggling themselves? THEY turn around.  They know they have to come to school because this ASD kid is relying on THEM.  They have a purpose.  Their grades improve.  It isn't just for NHS (National Honors Society) kids.  It's a miracle.

So throughout this semester these LINKS have been with Daniel.  I have heard reports of Daniel branching out and being much more social at school.  He comes home excited about "making friends".  When we went to the musical 3 of his LINKS were cast members.  We went again.  We bought the DVD.  They saw him in the audience and RAN through the crowd to find him and thank him, truly from the bottom of their heart, for coming.  They met with Todd and I at school and asked us questions.  We answered honestly.  We also told them his ability to ask questions has dramatically increased since they have been with him.  It decreases outbursts and behaviors.  If he gets angry he recovers quicker.  It's amazing.  Have I said that?  So this leads me up to last night....

Daniel had a band concert.  He is always excited about dressing up.  He wears a tux.  He thinks he looks pretty darn good....and he does. Daniel is doing well.  I brought him back stage before the concert.  I talked to a student teacher and asked if Daniel would be OK back there on his own and he said, sure no problem.  I dropped him off and went and sat in the auditorium and waited like all of the other parents.  I didn't wait backstage with him.  He's fine, they said, and he was.  Todd, Zachary and I were in the audience waiting for the concert to begin and Todd leaned over and said "are you nervous or worried at all?"  I honestly answered, "no, I'm not".  He said, "me either".  "So this is what it feels like?" I thought.  I have never experienced this feeling of true calm before a concert that Daniel was involved in.  There is always a level of anxiety.  How incredible!!!  It's not just him making progress!! 

Then, when one of his LINKS walked up to our seats and greeted us with her wonderful smile.  She excused how she looked as she just rushed over from dance practice.  She said one of the LINKS blogged about the concert (they all communicate through a private blog so they can discuss things that come up with their student and problem solve together and share information. They can all be on the same page all the time).  We chatted then she sat down.  Daniel's group was getting on stage.  It was perfect timing.  I sat back in my chair thinking she has no idea what she just did for me.  She took time out of her nutty senior schedule to come to this concert. Sure she probably had lots of friends performing, but I was thinking about how happy Daniel would be to see her after.  I settled in for the absolutely amazing concert.  These kids are something else!  We are so lucky to have such a strongly supported music program in these tough economic times. 

After the concert Daniel was sitting with his group in the audience.  He was on the aisle.  As he was standing up, juggling his huge baritone and his music three, yes three of his LINKS (the same three who happened to be in the musical) ran down the aisle toward him.  Their enthusiasm was bubbling over and they were complementing him, congratulating him and telling him how dapper he is in his tux.  Generally making a big fuss about his awesomeness.  They took pictures as a group with him.  I stood off to the side holding his baritone with emotions I can't even explain to you.  When we all finally dispersed Zach looked at me and just said "wow, that was amazing, what great kids".  I could only nod my head as I was choking back tears. 

On the ride home Daniel was chatting about how great he was (totally true) and I couldn't speak.  I was so choked up.  I knew if I talked I would cry and he would think I was sad and I wouldn't be able to explain that mom's cry when they are happy too.  So I just drove home acting like this is like every other day.  When it wasn't.  It was something I'll never forget.  When you spend your life pretty isolated, even though kids like Daniel, they are nice to him and include him, things like this don't happen.  Until now. 

Monday, May 14, 2012

Happy Mother's Day

 Happy Mothers Day!  Being a mom is one of the most special things in the world.  When Daniel was born a month early there were many complications and we spent the first 3 to 4 of his life separated from him by glass.  He was hooked up to so many machines and drips but when we would sit by him everything would regulate, his breathing, his heart rate, his oxygen levels.  Despite the glass between us he could hear our voices and we could put our hands through to touch his little body but he was protected from us due to his very vulnerable system. The power of parenthood was shown immediately for us.  The fact that your mere presence can have that effect on a baby is mind boggling.   The first time I was able to hold him and we were alone, I made a promise to him. I whispered in his ear that I would always be there for him.  That I would protect him no matter what.  That I would stand up for him and fight for him, as he was fighting in those first precious days.  I didn't know then what was in our future.  I didn't know how much of my life would be spent fighting for him and being his voice and his advocate.  But I think there is was a little part of me, now that I look back, that felt like the fight wasn't just in those first days at the hospital.  I feel like part of me knew it was always going to be more difficult with Daniel.  And it is.  But it isn't.  The rewards are grand.  The love is exponential.  I love both of my kids with all of my heart.  It is just different because they are different.  Zachary is the kindest soul and I love and appreciate everything about him. I can't believe some days how lucky I am that Zachary is my child.   My heart fills with pride and love for him, as it does for Daniel, but it is different.  Not more or less. 

Yesterday we didn't go to any fancy brunches.  That isn't really something we can do.  It was quiet around here with just our family of four.  My mother in law was with my husband's family enjoying their day.  I always spend a portion of my day, missing my mom and remembering the last mothers day we spent together, just days before she died at the too young age of 45, the age I will be this September.  I can't believe it has been 19 years since that day changed my life forever.  Because of these things I feel like I really appreciate how precious motherhood is.  It is the greatest gift in the world.  Yesterday I was surprised with a card from Daniel that he made at school, with his Link (a general ed peer).  It was a huge surpise for me because usually he doesn't keep a surprise.  He'll tell you he has a gift or a surpise because he can't keep it in.  He is bursting with excitement.  But this time he quietly told Todd that he had a something for me and he kept it quiet until Mothers Day when he gave it to me.  Here it is. I just had to share. It is just about the best present ever.  The flowers on front are cut out and glued on.

This is the inside of the card. It is a picture of me, of course.  In case you are wondering those are flowers on my shirt..... :) I wasn't sure at first... There is a tree, a star, a smiley face and a watering can for my flowers.

This page says, if you can't read it, "Dear mom, You are kind.  I can give you three loving kisses on cheeks and nose (this is a quote from a book.  Gotta love that echoalia)  I can thank you for making toast and bacon for breakfast in the morning.  And do you know what?  I love you!!"
The pictures are three pieces of toast and three pieces of bacon.  Precisely what he eats every morning.  An icecream cone, because who doesn't love that?!.   I think it is about the best card I've ever received.  I hope you all had a mother's day filled with love too.

Wednesday, May 9, 2012

Changing Times

Today I am writing this post especially for all of the people out there with smaller children who have autism.  It is unbelievable to me (and such a cliche) to say I don't know where the time has gone.  Daniel is 15 and finishing his freshman year of high school.  It seems like yesterday that he was in first grade and struggling to just stay in a classroom.  He was like a little Tasmanian devil going through the hallways, half the time crying or screaming and unable to say what was so upsetting.  He'd have to go to a room with his para just to calm down and be in a safe place for himself.  If you took the wrong route to school he'd cry for an hour, frustrated that his day was "wrong". He was toilet trained but I'd hold my breath daily hoping there weren't any issues that happened with that at school.  I was so frustrated trying to convince staff of the potential in Daniel, not to just see the screaming, frustrated little boy.  Hoping to keep him in the classroom as much as possible so that he could learn from his peers. 

Now he is wrapping up his first year of high school. My 5'10" tall self has to look up at my baby and he has to lean down for me to kiss him on the cheek.  He is a happy happy boy. He loves to go to school and can't wait to see all of his "friends".  He navigates the insane hallways of the high school, moving through the wall of teens on the way to his next class.  He is finishing his Algebra 1/2 class with an A and looking to Algebra 3/4 next year.  He is finishing his 5th year of band.  People laughed in 4th grade when I said he wanted to be in band.  He plays the baritone. 

Changing routines is still not easy.  It takes consistency and diligence.  But once he adapts a new routine with the improvement in it, he has it forever, until you try to change it again.  Last summer I worked most of the summer to get him to make his own lunch.  He, of course, eats the same thing every day.  Spreading the peanut butter on the bread was difficult for him, so when I say it took all summer of me holding him hand over hand (remember from OT?) showing him the angle of the butter knife, then him doing it on his own.  Then doing the same while cutting it diagonally (of course) in half.  Now he makes his lunch every day that he is home, on the weekends or day off from school. 

We are beginning the process of adult transition and filling out 10 pages of questions asking what Daniel can and cannot do, this is my simplification of the process.  It's a painful process for parents and one I did through Community Mental Health last year while applying for respite money for camp (which I didn't qualify for due to salary, not due to Daniel's lack of disability.  He more than qualified, the family did not).  It is very hard not to focus on how far behind he still is.  But I try.  So I focused on something else.  One of the questions was about making meals.  I happily had a "partial" with the lunch.  Todd and I chuckled about the question if he can "prepare 3 simple meals" because he doesn't eat 3 whole different dinners.  But it did make me think that I could teach him to cook a hamburger.  His staple main dish.  This is of course the point of the process. To figure out what you could work on to help him toward independence.  But as a parent it doesn't always feel that way.

Last night I finished the sloppy joes for the rest of us (it just sounded GOOD) and pulled out two hamburger patties from the refrigerator.  I called downstairs to Daniel and asked him if he'd like to cook his own burger.  He said "YES!".  I'll just repeat that.  He said yes.  So we went through the process with me talking and him doing.  He clumsily flipped them with his spatula while talking about the comparisons to Spongebob and HIS spatula.  We made his "salad" which consists of lettuce in a salad bowl.  I steamed some broccoli, he got out his lemon yogurt. I cut up a pear. (See we have made big progress with healthy sides!)  He flipped and checked the burger while commenting that he really "needed a chef's hat and apron".  I smiled and told him that was a great idea.  I'm beginning to see him as an adult.  It's always hard to let your children grow and become adults. It is REALLY hard when they have a disability. 

Reading has been both easy and difficult.  Easy because as far as I remember he could always read.  He'd read signs as a toddler while driving in our car.  He picked up Dr Seuss books and read along.  He was three and reading 60 page Curious George books.  It was difficult because he wouldn't move forward.  Testing his comprehension and debating "what he understands" is a night mare and a constant fight.  One test shows 2nd grade comprehension, one shows 4th then another day 6th will pop up.  No one knows.  So we insist the school just keeps exposing him.  Adults with autism report they understood much more than they output back.  At school he would read but at home he'd stick to the same books he read 12 years ago.  We periodically would try to push him beyond it to no avail.  Then a few weeks ago, after he finished readying "To Kill a Mockingbird" with his peers in English. (no he didn't understand it, but he read it and apparently answered some questions in class that shocked everyone) So I decided that was it.  I told him, "in our house everyone reads for fun before they go to sleep at night." "I do, dad does, and Zachary does and by gosh so will you."  I told him he would read a chapter ever night out of a CHAPTER book.Not his old books.  You know what he said? He said,  "O.K." Like why hadn't I asked before, of course he will!  He does this.  You can try something with a fight 10,000 times then at 10,001 he says "o.k." like it is the simplest thing in the world.  That, my friends, is why you can't stop.  Don't get me wrong.  We all get tired.  I can't push every day of our lives.  We would all be miserable.  But when I get the strength, when I feel like it's "time" again.  I push again.  Sometimes it doesn't work.  Then one day, it does.  And when it does.  It is not only magical, but shocking. 

Parenting a child with a disability is at the same time the most frustrating thing in the world and the most rewarding.  Jumps in ability are so much more obvious that with our neuro typical kids.  They are under such a microscope, and so are the parents.  I had to have an ongoing conversation with the school yesterday about how I answered some of those questions on the transition form.  It is very frustrating to have people question something you answered that your child has been doing forever independently, but the process makes it happen.  She wasn't saying I was lying, but she had a different answer based on something Daniel told her.  It makes me crazy.  I spent a lot of my morning going back and forth with her about it.  Only to have Daniel make his own dinner, then tell me he wanted to go to his IEP meeting today, then read me a chapter out of his book (it's Disney Fairies. But it's a chapter book!) and while reading he laughed and talked to me about it and I sat in his bed smiling as he read it to me. And it was awesome. So for the parents with smaller children with disabilities.  I know it doesn't seem like you will ever get here.  Those who didn't know Daniel when he was little think he was always like he is now.  He was not. It's hard. It's also the most rewarding thing you will ever do.