We got all the way to dressed and shoes on before he told me no to school.
I’ll try again the rest of the week, but I expect he’s had his last day at school for the year.Thank goodness Kate was there making sure PE was fun.
Well, it’s Friday. What a crazy week. Things will slow down for the three day weekend. We are back into our “normal” routine, well it’s normal for us anyway.
Phindy comes this morning. Phindy is the newest addition to the Marrs house. She is a lovely lady who came to Colorado from South Africa as an au pair and decided to stay. She started with us at the beginning of last summer and is such a treat. Danny slept and the weather is supposed to be mild…hopefully this will be a successful day out to the park and get some vitamin d in the form of sunshine. His immune system (and his attitude) could sure use it.
Jack is up and after checking in with sports center, has run downstairs to play the Wii. At 9, he is the baby, but don’t call him that. He is in third grade and has a huge crush on a classmate. He is also my biggest hearted kid. He is a vegetarian, because “mom, I don’t want to eat animals”.
I hear Katie in the shower. She is the oldest at 12 and we have asked a lot out of her over the years. Hopefully, she will only hate and resent me a typical amount for the next 6 years, and there is no permanent backlash for spending her toddlerhood in the car for Dan’s therapies.
Today is a lovely, typical day. Out to the bank and to pick up a birthday present for the sleep over party Katie is attending this evening. A short walk with the dog, a longer walk for me. Fac here later with dear girlfriends. Dinner and then maybe a quiet movie with Hugh later. Bliss!
I was going to take the day off, but then Mr Dan decided he needed to hang out with me all night. So while I am running on adrenaline, and before I crash from the caffeine, let me share with you what an all nighter looks like.
This one started at 10:45 pm yesterday with a big crash…they never start with a “mom” from the side of the bed. Did I tell you that Danny is non verbal? We have different levels of word approximations depending on how he is feeling and the last time he had a regression, but he’s non verbal. Except he says “mom”, always has, it’s the only word we never lose….I wonder what that means…
Anyway, you are going to have to follow along closely, because I have had only a couple of hours sleep. Remember in college, they tell you that if you can’t get 2 hours, you are in better shape to just stay up? They are totally right. I had gone to bed only about 20 minutes before, so I was totally awake when the crash happened. Danny was digging through his things and decided he needed to move his little tv…someplace.
I straightened up his room, changed him, changed the sheets and we were off. For the next four and a half hours we had drinks of water, some fries, sang I love you, a bunch of wiggles’ songs that I am frankly too tired to remember (or maybe they are banned from my conciousness?), cuddled on the floor, told the Three Little Pigs story over and over, basically I tried to keep him as quiet as possible so the rest of the house could sleep. A couple of times I was fooled into thinking we might go back to sleep, but not so much. He would smile, and say “mom”. Rats!
Poor Hugh, he started his day at 3:30 so I could grab a couple of hours. Hopefully the caffeine will kick in soon, so I feel human.
We do these frequently. Sometimes we have 10-12 weeks where this is the way we sleep. Those times happen to coincide with a regression of skills. We still don’t know why. We have done bunches of testing to rule things out, but no one can tell us what could be causing it. Anyway, it doesn’t change the middle of the night routine…
Tomorrow or the next day, I will start to tell you about the other two kids, I am off to pull Dan from the table…
Danny is in the “Challenge Program” at our elementary school and there is talk at the district level to move this group of 14 kids to another school with more capacity. This is the same district who had meetings last year to redefine the boundaries to help with the over crowding and caved to public opinion.
Now, moving these 14 kids would open up a classroom. And, if the entire team moves, the inclusiveness of the program won’t be lost (in theory). But there are some ramifications that are intangible. Unless you have experienced the discrimination, you wouldn’t think about them.
We didn’t always live in this neighborhood, we used to live 20 minutes north of here and I would drive the kids down to school. I would also do things like drive 20 minutes to go to the grocery store down here if I happened to have Danny with me. We weren’t stared at down here. If Danny had a melt down at the store, you could hear the kids explaining to their parents about Danny. These parents were taught acceptance by their children. I didn’t grow up around people with disabilities, they were in the “special schools”. So while my generation knows there is nothing to be afraid of, we aren’t completely comfortable around them. My kids and their friends are. I take my kids to different events I would plan and there was always a large population of different abled folks there. Katie and Jack don’t see the differences, to them it is the same as having different colored hair. The kids they go to school with are right there with them.
I told a story last night about trying to do adaptive swim lessons in a regular swimming class in our old neighborhood. So we signed Danny to take a regular swim class, with a volunteer. We had done private lessons and thought he would benefit from being in a class with typical kids to model after. You know, kind of like going to school in a regular class with lots of support. Did you know, that after the first class, the kind lady that ran that program, got a phone call from every other parent taking about how distracting it was for Danny being there, and aren’t there “special programs” for kids like him? Every single parent called.
Yes, there are places for kids like him, it is in their homes with their families. Yes, there are schools for kids like him, it’s the same one your kid goes to. Yes there are programs for those kids, they are the same ones your kid attends.
We are so lucky right now to be in a neighborhood where we can walk to school and have swim lessons up the hill with the same kids from school. What kind of lesson does it send to the general population if you move these kids?You didn’t redefine boundaries last year because of the public outcry, why would you send the message that these kids don’t have the same rights? Next week should be interesting…
We see Anna today. It has been a while because of her annual holiday trip back home. Things are always a bit off kilter when she goes and has her own life. Not so much with Danny, he is a very flexible little guy, but with me. I rely on Anna to be my sounding board. Sometimes when I am in the middle of the trees, Anna helps me see the forest. Quite a lot for her to carry on her shoulders.
Anna started in our house 9 (wow!) years ago as a home tutor. Danny was diagnosed with moderate autism Dec 23, 2001. We started an intensive therapy program on Jan 11, 2002. Our house was small, but with a wide open basement. In the early days, we did therapy in our master bedroom. They needed to be able to contain him while they taught him compliance. Can you imagine? I not only had these young strangers start coming to my home 35 hours a week, but I also had to make my bed and clean up my room every day?
I can only imagine how we looked. Jack was a baby, 3 or 4 months old, little butterball 3 year old Kate, I was an exhausted crying mess, and Danny. For a kid who was withdrawn from the world, he was sure aware of when Anne would show up. The minute the car pulled in front of our house, he would start to scream. And would continue for the next 2+ hours. When he would take a breath, she would say, nice job not screaming at me…we are all done. I think this went on for a month. It was exhausting. I can’t believe she is still around. I would hang on her every word about how he did, and bless her, she would always give me something positive to hold on to.
Anna is family. She has been through everything with us for the last 9 years, the medical testing, the school fighting, the venting about my marriage…She is Danny’s best friend. She’s the one who saved him, he no longer meets criteria for autism…. and me.
He’s back….I don’t know why it happens, but sometimes, Danny “checks out” for a while. The day started well, we slept in until 4:30. After potty, changing clothes, feeding the dog, and starting breakfast…Mr D and I hung out on the couch under a blanket and watched tv. We didn’t watch the same 4 seconds over and over again, we watched a couple of shows and had breakfast together. Everyone else got a chance to sleep in, which made all members of the Marrs Family much easier to deal with today.
Dan is back. I can’t even give credit to Anna, since we don’t see her until Tuesday. He was engaged, I was his very best friend today…I have missed that. At the risk of sounding like Jenny McCarthy, I think it is food related. When I pull him back down to only fries, I have my baby back. The down side, a diet of just fries is no way to live, even with Chick-fil-a so close. Everyone, even someone like Dan, who is basically intolerant to food, should be allowed to have some variety in their diet, and be allowed to have favorite foods once in a while. The other advantage, is when he gets those foods, we gain much needed weight. The down side…huge, huge behavoirs…I think they pulled $0.73 in dimes and pennies out of his nose yesterday while we were gone. It’s hard to balance.
But we were back today….
I am sitting here tonight by the fire and listening to Pandora. Here Comes the Sun is playing right now and it seems to be fitting end of the day.
I am beat, and ready to put my feet up, and shut down for a bit. But before I do, I want to write down how I felt today. Today was Janie’s funeral. Full of such sadness, for her dear husband and those sweet children. What surprised me today was the love. Many showed love by walking through 200+ people with platters full of food, some with the hugs, and some with the amazing job they did by making sure the food was always restocked.
Today was sad, and I am going to miss her. But it was also reassuring that we do have family here. People who accept us for who we are, flaws and all. People who have our backs should something happen. I had no idea 7 years ago when during mediation with the schools what an amazing favor they did for us to place Danny here and not where we originally wanted.
This is not where I thought my life would be 20 years ago, but I am so very grateful my journey has brought us here.
Well, I have been helping coordinate the funeral reception for a dear friend. We went to the Ranch House, tonight to set up. It looks lovely, not at all like the Ranch House. The reception is being thrown by the neighborhood ladies. We pooled our stuff, Margaret did the chairs, Anne scored a sound system…Janie will would have…I mean will be so proud to be honored this way. It looked beautiful.