What's in a week?

School is rolling along. Daniel is thrilled to go every single day. This makes me very very happy. We all know that when they DON'T want to go, life can turn to hell very quickly. I have reports of his doing very well in all of his classes. We had put a lot of emphasis on math. Last year he got about 20 minutes of one on one pre-teaching of math before each lesson. This helped him a great deal. It was difficult to figure out how to do this with the new schedule of changing classes every hour. They are telling me, "he's doing great, why were we worried?" I know why, because right now it is all review. If he knows something he knows something. They'll see when the new information starts coming!

He is also up for his three year reevaluation. I met with some of the staff last week about this. It is always interesting to me how the focus shifts from one area to another. Lately the shift has been toward his comprehension. This is always hard to explain to people. Especially because if you know him he is chatting almost constantly. This makes it hard for some to understand that his comprehension of what YOU are saying is very very low. This translates to his reading comprehension too. This is nothing new, but it has taken front stage at the moment. It is the biggest obstacle for him carrying on a conversation. He doesn't understand what is being asked of him or he doesn't know how to respond, so he just quotes some movie. He sometimes does say, "I don't know", but not often enough. I was talking to the new speech therapist during this meeting and we talked about this at length. I told her that when I'm with him and someone asks him something, I automatically rephrase the question so he'll understand it. I don't know how I know it will be helpful, but it is. And it's not something I can explain to others how to do. It is an instinct.

When he is getting a new swim coach or para or whatever, I tell them to use short concise sentences. If you get too wordy you lose him. Quickly. That is hard for a lot of people to do though. We set up his schedule for resource room English this year to work on his reading comprehension. I'm hoping we see some improvement. We did last year and it wasn't our focus. Math was. With Daniel you really have to pick one thing to focus on at a time. Otherwise it's just too much.

The speech teacher at school talked to his outside speech teacher. We are working on it. On Saturday I was talking to Daniel about practicing his baritone. He keeps asking me if he has to practice, "all the time". We are trying to get him on a schedule of 4 times per week. Saturday I told him he needed to practice again. And again he says, "do I have to practice all the time?" I went through the whole scenario yet again telling him it is his band homework to practice. His teacher said 4 times per week is good for Daniel. He sat there for a minute and said, "what's a week mean?"

I paused.

Frankly I was stunned. He doesn't know what a week is? This took me by surprise. It also made me very sad. We use calendars and planners all the time and he doesn't know what a week is? I showed him the calendar and explained the weeks. Each week (there it is again) at speech we turn in a job chart "for the week". It blows my mind to think of how many times a sentence starts with "this week" or "next week" and I realize he has had no idea what this means. On one hand, I'm thrilled that he could ask me that question and get the help he needed to figure it out. On the other it makes me realize how far he has to go and how little he understands of what people are saying to him. It also makes me even more amazed at how well he does on a day to day basis.

These glimpses into his mind are always a mixed emotion for me. I know that being able to ask will help him clear up some things. But I can't help but feel sad for him that he walks around daily with everything so unclear. As usual just when you are feeling up, something can bring you down. It's the way it goes. It is part of our constant struggle. You can focus on the positive or on the negative. I choose the positive. Otherwise, I don't know how I could get through the week.

Baby Steps

I believe I recently mentioned that for parents of kids with special needs, we do endure some very hard times. But the highs, even over things that seem small can be so invigorating and renewing. To me, it seems as soon as a frustration is running my life a glimmer happens to give me the boost I need to keep going. I am always, ALWAYS amazed when this happens. Partially because it always does. Some people would say it's God lifting me up, some would say the universe, some would say it's a coincidence. I don't know what it is for sure, but there is one thing that is certain. I'm glad it happens. Even beyond that, I'm thankful it happens.

That is probably way too much of a build up for what happened yesterday, but I'll try to explain the importance of it as well as I can. It's one of those things that you continue to bring your child to therapy and they work work work, and you get to a point where you think, "why am I paying this money week after week?" He works on skills in speech at school too, over and over. Then one day, in every day life, not a controlled therapy session, it, unprompted, spills out of his mouth. I LOVE WHEN THAT HAPPENS.

Yesterday, I picked Daniel up from school, as usual. I told him I didn't need to go to the bus stop because Zachary had baseball practice after school. We came inside together and he was very excited about some items he "bought" at school. Over the last few weeks they have had jobs at school. Daniel has been given jobs that he can handle easily enough. The kid loves a job. Why not? It gives him purpose. It makes him feel good about himself. His jobs have been 1. being in charge of the computer, shutting it down for the night, cleaning it etc. 2. washing down the tables in the classroom, and 3. some sort of trash duty that I couldn't quite get the specifics out of him. The kids have been getting paid in "Toad" bucks (their class is the TOADS, I don't remember what that stands for but it has something to do with totally awesome diverse students) Taxes are taken out of their earnings etc. then get to spend their money in TOADS town. They have all been working on goods to sell in toads town. Yesterday was the first shopping day. Daniel came home with an array of interesting items that will end up sitting on his dresser getting dusty, but hey, he was excited and carefully showed me each item and told me who made it. It was worth it just for that interaction!

Later, I decided that cooking was out of the question and we jumped into the car to go to Olga's Kitchen. One of our favorite spots. It's a restaurant that we can actually all find something we like to eat, even my food allergy ridden son Zachary, and everyone is happy. Hurray. When we got in the car, Daniel and Zachary settled into their spots. It was really the first time they'd seen each other since the morning and instead of Daniel's usual scripted greeting of "Hi Zachary, how was your day?" that his group therapy gave him(and he says to every person he sees, exactly the same way) he said, "How was baseball today Zachary?" I almost came out of my seat. It wasn't scripted, it sounded so completely natural and APPROPRIATE. Zachary wasn't even wearing his baseball gear anymore. Daniel had remembered that I said he had practice and asked Zachary about it at the first opportunity. After the answer, I praised Daniel all over the place about what a great question that was and how proud I was. It was truly exciting. Maybe it doesn't sound like a lot, but it is one of the basics of conversation that he has been working on for a long long time. To me, it was astounding.

Not two minutes later we were driving by a local jewelry store and Daniel said, "Dad, a few years ago we were in that store together and I was singing Beauty and the Beast under the giant chandelier". What? Daniel's sense of time is terrible. Everything to him was "yesterday". I know the way that he remembers information is so very different from ours that I truly believe things seem like "yesterday" to him all the time. I have read many many articles on this topic and they all say something different. Probably because all of the children they were studying are different. It seems that my own "research" shows that DANIEL, not ALL children with autism, but Daniel remembers episodes very very clearly but he can't determine when they happened. In this instance, he was correct. Apparently, the time he was talking about was a present for my 40th birthday which, unfortunately, was already nearly 2 years ago. Was it a coincidence? I don't think so. I've never heard him lead with "a few years ago". This is something that is worked on in his speech therapies, not regularly or directly but they keep coming back to it. For instance on Monday they might talk about what happened on the weekend. While this seems like a standard thing to do, it is to help him recall what happened that past weekend. Not a weekend six years ago when he went to Disney World. While that information can be retrieved and spouted off at you in amazing detail he, normally, can't give you any indication of where that is in time. My heart leaped again and I was still basking in the glow of the baseball comment!

I don't know what you, my dear readers, will think. Are you thinking, "wow this woman is really searching for something positive?" I hope not. I hope you understand, as I do, that to get to your goal, to improve and build on a skill you have to go a little at a time. Baby steps. Slow but sure. Hopefully on this slow but sure journey you will take the time to be thankful for the little things, understand their worth, and take in the scenery, because it really can be a beautiful thing.