I want to write this post about patience, which is funny AND ironic because the p on my keyboard is broken. I know just what happened to it, too, I vacuumed it up last weekend. I have been working on the computer in the toy room because my laptop's keyboard is broken and these kids bring so much damned food in here, it's always disgusting, so I vacuum the computer desk and whoosh!, up went the p key and the F5 key, too.
Anyway, patience. It is important to work on patience with any kids, but probably more with four kids and definitely more, an infinite amount really, if your kid has autism. So many things can go wrong on a daily basis, AND you have a lot of worry about the near and far future, it's definitely necessary to have an abundance of patience.
I give you last week. Anthony has been off from 'school' since December 20 and I ut it in quotes because it's of course not a school but a therapy center. He is prescribed 40 hours a week of ABA therapy, but he was off for two weeks. This is maybe so that his therapists, and other therapists, can have time off, which I'm sure they really need. When I went in for my last meeting, it struck me how hard they work, how involved they are with their learners, as they call them. But Mike and I, after going through the two and then THREE week break with Anthony, are of the opinion now that it can't work for them to have such a long break again. It was horrible. It was horrible and THEN they had ANOTHER week off because we had snow and extreme cold in Indianapolis. Anthony's school follows the closing schedule of the school corporation in the town where his lace is located, which is mostly not a problem, but it got really crazy last week because Thursday afternoon, the school corporation finally said they'd just have a delay on Friday and then the parents in this rich suburb of Indianapolis went insane, so worried that their widdle children's feet might get a widdle bit wet and HOW could they stand at their BUS STOP when there was SNOW DRIFTS there? HOW? How could they ut them on the bus, they asked on the school's Facebook age? Wouldn't the bus SLIDE? OH NO! What will we do? Well, what the school corporation did was change the delay to a closed day and so we had to tell Anthony that even though we told him YESTERDAY he could go to school today, in fact he would be home another day. It was like 43 degrees on the day that they canceled school. It was ridiculous and frustrating and it made me want to give u. I wanted to just stay in bed and give u!
But of course I didn't, we can't. We had to get u and put on boots and go for a walk and try and get some fresh air and try and tell the powers that Be at Anthony's lace that we think closing down for that long is a bad idea and detrimental to him and his program. We also have to try and see if they can see that it's kind of stupid to follow a school cor that is so worried about students standing at bus stops when no one at Anthony's place even takes the bus. Anthony's never even been on a bus, ha!
Luckily, Anthony still had occupational therapy while he was on break. He had OT on new year's eve and on the Tuesday after the snowstorm on Sunday. We went outside every day that we could. He went to the nearby trampoline place the Saturday after New Year's, but he couldn't go last Saturday because we were having a birthday party for Maria at 11:00 and we had so much to do. Trying to get this house ready for a arty with everyone in the house is another exercise in frustration, I was basically praying for a quick death most of the morning and if Mike had taken Anthony to the jump place and not been here, I know I would have lost my mind.
I have more patience with Anthony than I do with the other kids, as I've said. I have more because I need more. This morning I tried to wake him u and give him his medicine and get him out the door by 8:10 and he allowed me to dress him, but fought me like an animal when I tried to give him that medicine. He kept pulling up his legs so he could kick me, I thought, has he taken a self defense class somewhere? Isn't that what they teach you? Finally, I got him his medicine, gave him his congratulatory piece of gum, and put the girls in the car. I went back upstairs to get him and of course, he was soaking wet from an accident, so I had to change him and then get him downstairs and in the car so I could get him to school on time. Of course it is snowing, I just got the van back yesterday from six weeks in the body shop from when we got rear ended and it's making a funny noise, and I thought to myself, I can't do this. I can't. I can't do it! But then I just put the car in reverse and pulled out of the driveway and off we went. What are my options? To not do it because it's hard, because it seems impossible? Not allowed! In a situation like that, I have to be patient and wait for it to get better. It always does.
We are trying to find things to put on our budget for our medicaid waiver. I know they will cover respite care but do we have to find the car? Do we have to have a respite care babysitter for Anthony and another regular babysitter for the other kids? Can I put my Y membership on the budget because Anthony takes adapted swim lessons there? We have so many questions and we haven't even been approved yet. maybe we won't and then we will have to aeal. That will stink but we will have to do it, right? We have to be patient and wait to hear about the waiver and then be patient and wait for our medicaid counselor and then be patient and wait wait wait. We went on this list five and a half years ago, we heard we were eligible six months ago, and we are still waiting.
I am not a patient person by nature, I guess. But if you have a child who is diagnosed with autism, start brushing up on your patience skills, you are going to need them. Maybe read some Book of Job or something.
**Note, in order to get the p key, I typed it with a pencil and then copied and pasted it so if there are errors forgive me!**
Monday, January 06, 2014
O, I am terrible at this, ha! Really we will talk about Outlook for O.
I have been following this guy on Facebook and reading his blog, Autism Daddy is what he goes by, and I have really been enjoying his blog. It's I guess not surprising that people go on and on about what a great DAD he is, how his OUTLOOK is SO GREAT, on and on and on in a way that I don't really see people going on about mothers of people with autism. I would chalk it up to regular sexism, but I think there's something else, too. I think that Dads of (usually) boys with autism can have a lot of problems adjusting, as documented by Rodney Peete, and I think we are all just really impressed when we see a Dad acting in a good and positive way. Of course, we only see the outside of people's lives when they show us what they choose, but this guy is very interesting and seems to have an overall realistic but sunny attitude about his son, Kyle. He is also close to Anthony's age and the dad is close to Mike's age and the boy has pretty severe autism and is non verbal and was also just diagnosed with epilepsy, so there are many similarities and God knows I love to find similar stories to ours, to help us feel not so alone.
Anyway. I try to have a positive outlook about Anthony and his having autism. I remind myself that he is a healthy person, and that he is really smart. I try and look at the sunny side of it, believe it or not, even if by nature I am a pessimistic person. It has been so ... I have no idea what I was going to say there, we are all home and these kids are driving me bonkers. I only thought I could write this because Anthony has been sleeping literally all day, we think he had another seizure in the night because there was evidence that he threw up and he never and I mean never sleeps like this unless he has had a seizure. We want to call the doctor and see about if we should do anything but no one is working today because it's -15 degrees and we have a foot of snow and declarations of EMERGENCY have been made here in Indiana, so we are just letting him sleep and hoping for the best.
Anyway, I am a pessimistic person and I felt really superstitious in a way that I never was when Anthony was a baby. I would have ONE tiny thought about how he had slept okay the night before, or that maybe things were getting better and boom! he would have a terrible night. When Maria was born, I thought surely I can't have two colicky babies in a row, right? And then she was super bad too, and by the time I had Veronica I just expected it to go badly and then when it did I felt bad that she was so bad but also HAPPY that I was RIGHT, for once!
But I can't afford to be pessimistic about Anthony, I simply have to believe that things are going to work out okay for us, for him. I have to believe that his story will be more like this girl and less like the horror stories that I read seemingly everywhere else. He is so smart and so great and so...Anthony that I feel like I owe him a positive outlook. Lord, there are so many people with such bigger problems and there are people who don't even get to raise their kids. I mean, Anthony is right here! He is smart and sweet and so cute and charming and he also has severe autism and sensory issues, that is the whole picture, that is what we are working with. You can't choose your baby, as my mother used to tell me, but I know that we can choose our outlook and we owe it to Anthony to choose a positive and hopeful outlook. I think everyone does.