School and the end of summer vacation

School has started and Amanda is loving it almost as much as Tina and I.  Her homeroom class is small this year and we hope it can stay that way.  During the day Amanda attends a lot of other classes and activities.  Her favorite is art followed by adaptive PE and dance.

She also has therapy sessions throughout the week and is helping in the front office, so she is constantly on the move.  A major benefit to all of this mobility at school is how relaxed she is in the evening.  She just likes sit and visit or play a game of Uno instead of committing 100% to dominating her known universe.  It makes for a nice evening.  Then by 8:00 is actually demanding to go to bed.  She is asleep by 8:30 and then Tina and I have an opportunity to watch a movie, read or whatever.  I just love school.

Please hold for Amanda

Today I got a call from Amanda. Yes, that is correct, Amanda. She has been learning to speak on the phone and today she had something very important to tell me. After months of stress and effort, she has finished with the Texas state educational assessment test, alternative version.

Tina said she was literally dancing in the car. This test has caused Amanda a great deal of self imposed stress. She knows how important it is for the mainstream students to pass it and she just knew it was equally important for her. She also knows she has a hard time counting to ten because she doesn't say the number seven. The days of the week are difficult because she doesn't acknowledge the existence of thursday. But now the test is over and she is one happy kid.

It is my hope that her good attitude about this continues for the rest of the school year. Sadly, we are looking at school being finished in just seven weeks.

The one thing I am wanting this summer is near drought conditions. Last summer was so wet we hardly had a chance to enjoy the pool. I would prefer to be a near amphibian this year.

Post ARD

We had her ARD meeting last week. There were several test results we had to review, the least favorite being the IQ test. While the score was in line with what she has tested to in the past, it is still so painful to see on paper. All of what it means was laid before me, how our world will hardly deviate from its course, how I must continue to take care of myself so I can take care of my child for years after other parents are complaining of the empty nest. How I will never have grandchildren to spoil or will have to pick my own nursing home and all the things in between.

Yes, I joke that I am fortunate that I don't have to save for college or a wedding, but that is only the price of "normal." Sometimes I hate that has been denied her and me.

To quote the recently honored Dennis Hopper, "This is some heavy shit man." I think he has said that in most of his movies.

I was reading one of my favorite blogs, To The Max, and posted on it was the Parents Bill of Rights comprised by its author. I'm going to repost it here with a few coments, I agree with so much of it:

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are. - Tina says I have murder eyes that shield me from most people. She says she wants them too.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever. - It's great your child is so amazing, pardon me while I drag mine out of the store during a meltdown

* We have a right to wonder “What if…” every so often. - YES WE DO and that is just fine

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun. - She is an awesome playmate, channelling my inner child fixes most things

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout. - OK, I don't drink light wine, but believe me, the white cup in my hand doesn't have apple juice in it.

* We have a right to react to people’s ignorance in whatever way we feel necessary. - that would be the murder eyes thing again, coupled with my smart ass attitude I don't suffer repeat offenders

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child. - A-MAN!

* We have a right to go through the grieving process and realize we may never quite be "over it." - it's not for ourselves that parent's grieve

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us. - she is a great sweeper and laundry folder

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio. - or what ever

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things. - I've done that

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things. - tough days just happen

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our children’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs. - as you can tell at this moment, sometimes it's just plain hard

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it." - it's as simple as this, failure is not an option

* We have a right to wish that sometimes things could be easier. - yes we do

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

Compiled in honor of my little boy, Max, and all of our beautiful children on June 17, 2009.

Even just a slice is nice

Amanda has been having to keep track of the weather for a school project. She does this at school during the week and then I help her over the weekend. She isn't really interested in dew points, barometric pressure, El Nino, or other such variances. What Amanda really wants to know is today a purple coat day or a pink coat day?

Her purple coat is a down coat and keeps her very warm. Her pink coat is a lighter material and is designed for days in the 50's. When you are 11, that is what matters. But for school we get a little more accurate.

This morning I was dropping her off at school and she checked her backpack. I heard, "Uh oh! No homework." I told her we would bring it up to school when Tina picked her up this afternoon and then I drove on to the gym.

After my workout I arrived home and Tina told me something I have never heard before, "Amanda called." Amanda never talks on the phone, but this is something that she has been working on with her teachers.

I asked what about. Tina does a perfect Amanda impersonation, "Hey Mama! Forgot homework." The school is less than half a mile from our house and Tina drove up the sheet with our observations on it. She said Amanda was beaming proud and so was Tina. It was a slice of normal that we seldom get to see. It was nice.

A star is born

Amanda was in the Christmas play this year. She has been in plays before, but took last year off because she said it was too stressful, but this year the class requested that she be in it.

The name of the play was "Santa's Playlist, and it was a cute musical. The cast was made up of more than 120 5th graders dressed as reindeer, elves, toy soldiers, and 1 snowflake, Santa Claus, Mrs. Claus, Woody the Cowboy from Toy Story, and the most precious baby doll you ever did see. I'm a bit biased because Amanda had the part of the baby doll.

The kids did a great job. They knew their lines, sang the longs and danced. Amanda was front row center and when she had to stand and dance two boys helped her up and down.

Considering she couldn't even see the audience I was very impressed with how well she did as the center of the background of the play.

What I love about her school and classmates is how welcoming and understanding they are of Amanda. But I think that has a lot to do with the way her dance instructor described her, "Amanda has it going on."

I just can't be more proud of her. She amazes me.

Happy homecoming

I entered the house yesterday and was greeted by the smell of blueberry muffins. It's always nice to smell something so warm and delicious. Amanda and Tina had just pulled them out of the oven and the aroma was as good as non-chocolate chip cookies could smell.

Then these two beauties added something even better to my homecoming. It would appear that Amanda, in her words, is now hooked on peanut butter and jelly sandwiches,

This was indeed a surprise because she has never had one before without spitting it out. In fact, it has been quite some time since she has added anything new to her diet. If anything, it has been suffering a contraction of late. So I went out and bought PB&J along with some other stuff that Tina needed. We have been suffering an unnamed typhoon the past few days and she hadn't gotten out.

After dinner Amanda did one more awesome thing, she ate a muffin. Again, please understand this is totally out of character for her. Her class at school does a lot of cooking and she is learning to eat new things. This is one of those intangibles that can't be explained deeply enough. This teacher is reaching Amanda on a whole new level and she is loving it.

I just don't mind paying school taxes when I know stuff like this is going on.

Small class and a small victory

Amanda is back in school and loving it. She is in a much smaller class this year and Ms. Debbie has returned as an aide. Her class has emphasis on life skills and is set up like a house, complete with kitchen and laundry room. When I describe this class to most people their response is usually, "I wish my kid could take that class." Well, home economics is offered in high school, but then again it is harder to teach normal teenagers the basics of life than it is younger students with developmental delays.

Amanda is very proud that she earns a smiley face for her behavior for the day. She is making a point to show it to me. She prides herself on cooperation and has learned to stay much calmer when things go a rye.

Amanda's big accomplishment has come in the past two weeks. She now goes to sleep by herself. For many years she was terrified to fall asleep in her bed by herself. Either Tina or I would have to lay in bed with her until she was asleep. If we tried to leave before she would succumb to sleep she would follow us out of the room, call out, scream, cry, or worse. Those of you with a special needs child like Amanda know what I'm talking about when I say, "or worse."

But now, after I read her a story or tell her about my day, she simply says, "Bye, close the door." Within fifteen minutes she is asleep.

I think this came on do to a flight delay two weeks ago. My brother and I flew into DFW after a quick trip to LA. We were scheduled to get in at DFW around 8 pm, instead it was closer to 11 because of a late arrival at LAX and then a broken toilet. Amanda had decided to stay up until I got home. Had it been the original 11 pm arrival at home she would have made. But there was no way she was going to make it until 2 AM. She pitched a pretty serious fit, but Tina held her ground and told her she could just lay down on the movie sack until I got home. Tina said Amanda talked to herself for about half an hour about how mad she was and then fell asleep. About 1 AM Tina her call out, "Hey Tina! My back hurts, want my bed." Tina walked her to her room and said Amanda was asleep as soon as her hed hit the pillow. Ever since then she has been going to sleep by herself.

She told me, she thinks about stuff before she falls asleep now. This has become a serious victory in our house. School wears her out and she is asleep by 8:30, or at least kicking me out of her room, and now Tina and I have an extra hour and half together in the evening.

Curve Ball

The interview was different than we thought. Unlike interviews in years past, this one was not for a special education class but for a speech/debate course. The topic was Pro 100% mainstreaming of special education. The problem is that Tina and I are against it. Amanda has been placed in mainstream classes and they simply did not work out. Even when she was seven years old and placed in a kindergarten class it was too advanced for her.

Tina and I are very aware that our child does not fall in the spectrum of normal. Instead of denying this fact and trying to force the world and her to blindly include her, we take care of her the way she needs it. We know she doesn't do normal things, at best she mimics a lot of behaviors but we don't delude the fact that she can't do a lot of things that other 11 year old girls can do. But we also know she is a sweet girl who when loved is as gentle a soul as you will ever know and having her in your life can make you a better person.

So, we didn't do the interview but the girls weren't upset with it. They were still having trouble with the topic. As education majors I think they should have picked a subject they didn't care so deeply about, make the argument and get the grade. After all, it's just college.