Wednesday, September 30, 2009

The Good News/Bad News of Comprehension

As I mentioned "comprehension" is taking a front seat in our lives. As it should. I don't really understand if it's because I've been thinking about it and focusing on it, or if it just magically appears before us. But all of a sudden comprehension issues seem to be everywhere. It is "Comprehension's" turn in a long line of things that need to be addressed. With Daniel, it is best to deal with one issue at a time. It's really all he can handle. Math has been the focus, academic wise, for a while now. There came a day where the little light flipped on and some of it started making some sense to him (about 4th grade) and so that day, math became the focus. It could be bike riding, it could be independence, it could be socializing. It could be about 1 million things on any given day.

We had a homework assignment tonight. Very small. He had worked on most of it in academic support. One of the sheets was defining words, telling the part of speech and writing a sentence. A difficult task when you have no idea what a word means. We only had one of these. One was enough. The other sheet was "predicting" also a very difficult if not impossible thing for him. We had two of these words to do. I was explaining a word to him and what it meant and he started SCREAMING and beating himself in the head. Out of nowhere. Left field. For some reason it scared me more than normal and I immediately started crying. Very odd for me. Is it the fact that I am beyond exhausted with the new 6:00 am rising time and recovering from a cold that doesn't seem to want to let go? Is it that today is my 42nd birthday and frankly, MY birthday's aren't my favorite? I'm not afraid of getting old. I welcome it, (it sure beats the alternative?) but I don't know, I've just felt "weird" today. Anyway, my son was beating himself on his head and I was crying. Daniel had no idea what to say to this odd female reaction. I was having a flash back to Mork from Ork, Robin Williams earliest TV gig (now I'm really aging myself) and him watching the girl cry and saying "your eyes are leaking". But really, how many men would know how to deal with my sudden crying? But he did struggle out a "did I scare you?" Very quietly and timidly.

Me: "Yes you did Daniel"

D: "I'm sorry I scared you"

Me: "Daniel, why did you start hitting yourself?"

D: "Because this is hard" he says very calmly.

Me: "Yes, yes it is Daniel". (heart breaking in two)"What's the next word on the list to define Daniel?"

"Forgiveness" he answers.

Sigh. How appropriate.

We had 3 words to discuss and define and explain and this is what happened. He gets so frustrated.

I received a note from his speech teacher the other day. That day Daniel had "participated in the listening comprehension portion of the OWLS (oral and written language scales). In 2007 Daniel scored a 56 (the "normal" standard score range is anywhere from 85 - 115). Yesterday he scored a 63. Good news, he improved. Bad news, he scored a 63. I will be curious to see what some of the other testing reveals. He is up for his three year evaluation. The results of his tests should be interesting, but I don't think it will provide any earth shattering news. We know all of these things, but it may be helpful for the educators to see exactly where he is. Hopefully it will help us figure out ways to better help him so he doesn't keep beating himself in the head? This has been a problem. The hitting himself in the head. It's not very often. But it is disturbing. The good news is he isn't hitting others anymore. The bad news is he will usually hit himself instead. We give him strategies as alternatives. But, you get rid of one behavior and it will always be replaced with something else. You just have to hope the replacement behavior is an improvement over the former one!

The good news is today is another day and his new swimming starts today! The bad news is no cute Nikki instructor. We got a call from the new instructor last night. The new name is Marcus. No cute college girl this semester!

Tuesday, September 29, 2009

Buddy Walk

Sunday our family headed out into a beautiful fall day for the annual Buddy Walk at Potter Park Zoo. We were walking in honor of our friend Joe. Joseph has Down Syndrome and is a friend of our family. His mother Amy and I sit together every Thursday afternoon during swimming for Daniel when it is "in session". "In session" happens to begin again on Thursday, October 1. That isn't how I originally met Amy, however. We originally met through Zachary. I believe I have told this story before on this blog, but on Zachary's first day of kindergarten I was a mother in tears. Not because my baby was starting kindergarten, it was because we had had a change with Daniel's para pro at the last minute and it had rocked my world. The day was starting not as planned and I was worried how Daniel would handle it. I was very upset and still trying to do the play time in the Kindergarten room with Zachary. As usual for him, a big moment in time was over ridden by Daniel.

I remember sitting at a table, I believe it was covered in playdoh and fighting back my tears. Amy asked me some questions. I don't remember what, but I remember her kindness. I soon found out she was also a mother of a child with special needs. This child turned out to be Joseph. We have had a bond since then, because even though we don't have the exact same challenges, we understand each other. At least I'd like to think so. Zachary and Emma are very similar kids, both "the siblings" of the "special" child. Joseph is much younger than Daniel so I have lived some of the things coming their way. They also have challenges that I have not dealt with. There is one thing for certain. We both have some damn cute kids!

We went to the Buddy walk in support of Down syndrome and our friends. It was a wonderful day and "Team Joe" had a BIG showing. They had food, drinks, blow up slides, jump houses, Sparty (the Michigan State University mascot who is the BEST mascot anywhere!) and the best of all, friends. Here are some pictures of our day. It was wonderful!! If you have a buddy walk near you, be sure to support it!!

Monday, September 28, 2009

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.

Thursday, September 24, 2009

Off and running

When we are nearing the end of summer, a lot of stay at home moms, including myself, start to feel September lurking upon us. We have spent months trying to keep everyone busy. Enjoying our time with our kids, but starting to feel the yearning for school at the same time. Routine. For both the kids and US. I'm really not very good at keeping to a routine in the summer. I admit it. I always have really great intentions, but it never happens. I try think about tutoring for Daniel, then I see his delight at having the summer to ride bikes, go to the pool and relax and I think, "he's earned it" and I don't follow through. It happens every year. Yet every year I fool myself once again.

What also happens every year is I think school will start and I'll feel relaxed. It never happens. I end up so busy, despite having the kids gone from 8 - 4 (by the time buses deliver everyone) that I find myself wishing for the lazy days of summer again. How could I have been so foolish to think I wouldn't be busy? When will I ever learn?

Besides my endless lists during the day, the nights turn crazy. Last night my husband had is third night meeting in a row. I'm on my own. I know a lot of parents are on their own every single day, but we pretty much plan our lives thinking that there will be two of us to handle it all. I found myself feeding the kids McDonald's and bringing my "Bacon Ranch" salad with me to Zachary's flag football practice, Daniel brought his Nintendo DS and we hung out in the car for an hour. Once I got home I realized I had made a huge mistake in not checking backpacks before leaving. It was 7:45 and there was a lot to do. I had already told Daniel he would need to practice his baritone. He is supposed to practice at least 4 times a week for 15 minutes. It doesn't sound like a lot but we are finding it very difficult to fit in. Mostly because you usually have to sit with him and push push push or it won't get done. Last night Zachary had to write sweepstakes questions for school which includes writing a question from newspapers, or these Time for Kids that they get from school. Three questions, one about local/state, one national and one international. With his sincere questions after reading each article, trying to understand the workings of health care reform and the effect of incandescent light bulbs on the environment, it isn't a quick assignment. (he's in 4th grade). Because of these sweepstakes questions our dinner conversation has switched from SpongeBob to "did you know that Meridian Township is having budget problems, they basically have three options....." Did I mention he's in fourth grade?

As we were reading the articles for homework I told Daniel he was on his own for baritone. He needed to play each of his songs one time. I know from previous practice that takes him almost exactly 15 minutes. I told him I'd be listening from the kitchen. He asked if he should "keep his door open so I could hear him better?" Um, no Daniel, I can here your gigantic brass instrument just fine. In fact, with our paper thin windows I'm sure that most of our neighborhood can hear him. (Sorry everyone )Daniel had a math quiz we needed to review for. Showers needed to happen, Zachary was insisting on working on his Michigan map project due October 9th (I really don't know how we have raised such a task master of a 9 year old) and the whole evening was spiraling later and later. Daniel was very proud of himself for practicing on his own. It took us two years to get to this point, but I think our busy evening forced that issue. Now we have a new routine, involving less help by a parent, which is the positive thing that comes out of craziness. It forces them to be more independent. They have to be. There was no other choice.

As I came out of Daniel's room and the last light was turned out, the house was quiet. Todd strolled in the door from his meeting kissed the still awake children good night, was the hero for being there before they went to sleep and asked what I'd been up to....To this I could only roll my eyes at him and say A LOT. Today I am going to email Daniel's speech teacher from when he was in 4th grade and kiss her feet because when Daniel was in 4th grade she did his sweepstakes questions with him. All I could think about was how thankful that I was that she took that off of my plate for a year.

The school year is upon us. I'm meeting the school for Daniel's re-evaluation, going to my own committee meetings, juggling homework, sports and instruments, pleading with transportation at school to maybe bend just a little bit, preparing for a garage sale, trying to keep the house fairly clean and people fed and feel like I'm barely holding my head above water. And next week I have jury duty....fantastic.

Friday, September 18, 2009

The First weeks of middle school

Thanks to my facebook friends for checking up on me! This start to school has been CRAZY. I am beginning to think transitions, while hard for Daniel are harder on ME. We have been working like crazy to get Daniel set up in a good schedule. I'll try to give a "quick" rundown.

As of the first day of school we had no idea who his para would be. The first day I walked him to the bus stop (the bus carries highschool and middle school kids). I put him on the general ed bus which was beyond capacity. He had several wonderful neighbors on there with him. I knew the bus driver, (who is AWESOME) and whispered to her that his IEP has him sitting behind the driver. He did, even though it was so full. I got off waving (the only parent within MILES) and he looked scared straight. I was having an internal massive breakdown while smiling and waving. I just had put him on a over packed bus full of nasty teenagers, on the way to middle school, where I had no idea what his support for the day would be. NO ONE CAN EVER TELL ME I CAN'T LET GO. Wow. I had many other parents of general ed kids say they were scared out of their mind how was I coping? I had one neighbor ask me if I needed to take some xanax, the other one offered for me to come over at 9:00 am for a cocktail. I put Zachary on his bus at 8:00 (same school since Kindergarten, he started 4th grade, I just shoved him on and walked away :) my husband and I went out to breakfast. I got home and marched over to my glorious neighbors. It was her girls who were on the bus with Daniel. Three of her kids were changing schools and it had been a hectic start to the year. By God, we had a drink. Tequila and orange juice if you are curious. I have to say THAT WAS THE MOST BRILLIANT PLAN IN THE HISTORY OF THE WORLD. I'm almost ashamed to say how much better I felt, although I don't know if it was the tequila or chatting with my friend for 2 1/2 hours. Probably both. Please don't think less of me! :)

Daniel did have a substitute that day. She was ahem, "fine" according to the social worker (sw). But they thought they might get a different one the next day. Which they did. If I've lost you, Daniel's para pro is on family medical leave until November 30. So we have 12 weeks to fill. This day two para was quiet wonderful, so I hear. I haven't yet met her. She has agreed to stay on until November 30. All the teachers are reporting a wonderful rapport with Daniel and a very calm demeanor. Yea.

The real hero in all of this is Daniel. He never missed a beat? Can you believe that? He was SO excited to go every day. He is the most amazing kid EVER. I am now walking to said tequila pushing neighbor's house (just kidding Elizabeth) and he is continuing the walk to the bus stop with 5 kids from the hood. All girls. He is growing up. Let me just point out this was a huge, huge huge step for me as well as him. He is ALSO walking home with two neighbor boys, over the pedestrian overpass over the very very busy road and all the way home. Without me. Just the three boys, who stepped up and asked to help. Yes, you heard me, two 12 year old boys asked, several times, if they could walk Daniel home every day. AND I SAID YES? Of course this is after I wrote the longest email in the history of the world giving them do's and don'ts and exchanging cell phone numbers with them. That second day of walking I sat on my porch willing myself not to text them "where the hell are you?" "is he ok?" "are you ok?" Nope I didn't do it. I pretended to calmly read a magazine and pretended to enjoy the nice weather, while my head was screaming these things. I picked up my phone to look at it for the 400th time and they walked around the corner. Ahhhh. Sigh. Daniel is in his glory. Mom is losing it a bit, and trying to give him the independence he himself has advocated for. Every day I am more and more proud of not only Daniel but the wonderful community we have here. I am truly blessed. This has been a really hard two weeks for me.

The honeymoon period is ending at school. Some rockyness has happened. I went to an incredible two day conference out of town. I sent in my resume for a job and now I have a cold. I next need to figure out how to clone myself. More on all of that later. I don't want to ramble on too long. But thanks for checking on me bloggers. You are a wonderful community too!

Friday, September 4, 2009

Stinky, School, Clothes, Weekend

I have been a blogging slacker of late. I know I have! Here are some short updates:


We are in the home stretch before school starts. He is supposed to be taking the bus again this year after a two years hiatus. This is something he is very excited about. I have been in negotiations with the district about how some of this will look. The bus has always been the most frustrating part of his schedule. I don't understand how I can get everything else set up to perfection and a bus can continuously get in my (and many others) way. But it is the case and here I am waiting for information. Frustrating. I don't really feel that I can say any more than that, so it will just have to stay with that amount of information. . .


I was sitting next to Daniel at Devos Hall in Grand Rapids, watching a High School Musical production. He loves these live shows! At one point he put his arms up and I almost passed out. When did he get smelly? Wow. I texted my husband (who was at his parents house) "D needs deoderant, fast." Luckily his is obsessed with showering and does so daily. I have to keep telling him to stop washing his feet. Everytime he goes outside he comes in and washes them. I have "mentioned" a few times that showering before bed and washing them then is sufficient, unless you are walking in mud for some reason?


Michigan summer has, well, not to sound repetitive, stunk. It has been cold, wet and depressing. This last weekend has finally decided to be high 70's and clear skies. We will hopefully get in some last outdoor swimming.


We have been shopping for clothes. He is in the top size of his favorite pants, 20 husky. What next? I should have pushed the button thing earlier....


I need to work on my resume this weekend. More on this later. How is that for a teaser?
I hope everyone has a wonderful holiday weekend!