Monday, April 27, 2009
I realized that the biggest concern with leaving Daniel, which is a HUGE one, would be his lack of using the phone. His outside group speech therapist worked on phone skills last year and she did get him to actually TALK on the phone which, believe me, was amazing. At the time if you tried to hand him the phone to "say hi to dad" he'd cover his ears and run away screaming. Now he will chat, as well as he can. The problem is that he had never made an actual call, nor had he ever answered the phone. Both very obvious skills needed to stay home alone. Since Daniel himself has requested a shift in that direction, I decided that there was no time like the present to start slowly working in that direction.
Last week an "opportunity" arose. OK it was a problem in my book. My husband had a meeting to go to in the evening for the 3rd count them, 3rd time that week and I had book club. Doesn't sound to earth shattering, but my monthly cocktails, I mean book club is my girl time. I didn't want to miss it. Cocktail hour, I mean book club starts at 7:00 and Todd did not have to be to his meeting until 8:30. It was to be short, 30 to 45 min or so. Book club was across the street. Perfect. Zachary would be home and if anything caught on fire he'd call my cell or run across the street. Time for a test run.
I went to book club, Todd went to the meeting. If I didn't hear from my husband by 9:00 I was to leave and get them settled down for bed. I, of course, didn't hear from him so I had to run home. All went well, I was home for 15 min. and then Todd arrived. Pretty good trial for making everyone feel a bit comfortable, including me.
Then Saturday I needed to drop my husband and Zachary off for an outing with friends. There was no way this would take more than 5 minutes so I told Daniel he could stay home IF he answered the phone when I called. Ah ha. Bribery, I mean, reward! I dropped them off and on the way home, gave Daniel a call. It rang once, and click, he answered, but he didn't say anything.
Me- Daniel, are you there?
D- yes mom, hi!
Me- Everything ok?
Me- OK I'll be home in a minute. Great job answering the phone! Hang up by pushing the red button.
I arrived home and it surprised me that Daniel wasn't in the family room. I called out to him. Not in the basement. Called again. He was in his room. He came running down the stairs at me. VERY EXCITED.
Me- What were you doing Daniel?
D- I was telling Mickey about answering the phone.
Me- Really, do you tell Mickey other things?
D- Yes, everything.
As I suspected. I have overheard many "conversations" in Daniel's room through the door. He seems to be sharing everything with "his little pal Mickey". While this is very dear, it is interesting because I really think he is practicing his conversation skills too. Mickey answers back in a perfect Mickey Mouse voice via Daniel, so he is taking on both sides of the conversation.
I asked Daniel's autism consultant at a meeting today what she thought and she pointed out that it is normal development. All little kids use stuffed animals as props, talk through them and to them. They just aren't normally 5'4" 150 pound 12 year olds. I realized that of course she was right. His newly developing skills are coming out how everyone else's do, just very delayed. For now I'm happy that Daniel has Mickey as a sounding board, someone to pratice with, and someone to share his accomplishments with.
Friday, April 24, 2009
He's a massive perfectionist. He's good at just about everything, but doesn't want to try things until he has it all figured out in his head ahead of time. I think he is always trying to make the world right since he has seen it upside down so often.
He wants to be the president of the United States. You never hear kids say that do you? He wants to be in charge. Because he is in charge at home. He's a natural leader, and he feels he can change the world. He aspires for greatness. He has a brother that demands perfection. (see last blog about demanding I stop making mistakes!)
Injustice and intolerance are maddening to him and always have been. He's nine and complains of people not seeing each other for who they are and not seeing past the color of someones skin. He complains of tobacco companies putting out products that can kill you, to make a buck (ok a lot of bucks). Where is the justice in his brother having autism and he does not?
He's empathetic. Always has been. The social worker says most kids start developing their sense of empathy around 3rd grade. In first grade Zachary was standing up to kids telling them to stop saying things because it was hurting a friends feelings. No one else cared, but he held strong. When you see your brother struggling every day, your view of the world changes.
He always knows the right thing to say to his brother and he never gives up. Even when his brother never answered and didn't want to hear it. He'd try. He'd try. He'd try again. And now he is starting to get a response. Lately they play together every evening. It might only be 30 minutes, but the victory on Zachary's face was worth the years of waiting.
He is respectful. He would never turn on a tv channel or a radio that he would know would upset his brother just to taunt him. Ever. Teasing isn't an option. "Why would someone do that?" He wonders.
He's a wonderful artist. Zachary draws. A lot. Often he'll draw Thomas the Tank Engine, or Candy Land characters, even though he doesn't care about them, just because it will make Daniel happy. Daniel has a pile of these in his room and it's growing all the time.
He doesn't talk much about autism at our house. But he'll stand up in from of cub scout troop, social workers, parents and Dr's and give a talk on autism, without hesitation.
In Kindergarten when a child asked him, "what's wrong with your brother?" He answered, "nothing, he's just Daniel".
Often, the world would be a better place if we looked at it through a child's eyes.
Wednesday, April 22, 2009
Today he awoke to the sun shining. When I came in from the bringing Zachary to the bus stop he was standing there waiting for me. When he wants to ask me something that he thinks I might say no to he asks with his head down in an aw shucks kind of way, and he was assuming this posture upon my entry. He said, "can I wear short sleeves?" I mean really, he is too adorable. I happily agreed even though it was brisk, and only getting into the low 50's. Daniel scurried up to his room for the rest of his morning routine.
When he came down I was in my designated position in my leather chair, laptop in one hand, coffee in the other. He sat down to put in a movie for 15 minutes when I glanced up from my computer only to see half of his back staring back at me, along with bare legs. I went over our conversation in my head and didn't recall anything about shorts, but that was really second on my list to the amazingly small shirt he had somehow stuffed himself into.
me- "Daniel, what shirt do you have on?"
Daniel- "this one" he says while he turning around.
I am met with the image of a Baja ATV shirt that I bought for Zachary 2 years ago. Oh man, here we go. He does NOT like to change his clothes after that step is checked off of his imaginary list.
me- (in a very happy sing songy voice) "Daniel, that is Zachary's shirt, it must have been in your drawer by accident"
Daniel- "DO I HAVE TO CHANGE MY SHIRT!?"
me- (ridiculously happy and smiling in order to fend of his wrath) "what a great idea Daniel, let me help you find one"
Daniel Stomping up the stairs and struggling to get our of the tiny shirt. It reminded my of this. I am in no way saying Daniel is "fat" but this scene makes me laugh and it was, let's say, reminiscent:
I literally had to pull the shirt off of him over his head, while it scraped his whole body on the way up. How he got it on I will never ever know.
I (still being gloriously happy and upbeat) pulled out his pride and joy bike camp shirt from last summer. He was happy with that selection but still cross with me.
As I was turning around to leave his room, he looked me dead in the eye, with much disdain and said, (ahem, ready?) "YOU NEED TO STOP MAKING SO MANY MISTAKES!" and stomped back downstairs to resume his routine. Nice. I'll try Daniel. I'll really try for 100% accuracy. But I was thrilled that 1. he didn't freak out on me. and 2. recognized that people make mistakes and he doesn't have to like it. I'll chalk this up to progress and hope that I start doing better ;)
Monday, April 20, 2009
The system had to have a pretty immediate feedback. For instance he couldn't wait until the end of the school year to reap his reward. Daily seemed like too much to maintain, so I settled on weekly. This was the deal. Each day that he got through the day without putting his hands on someone he got a star for that day. We have a chart in our laundry room, that is a blank calendar. If he doesn't hit any one he gets a star. If at the end of the week he gets a star for every day of the school week we will take him swimming on the weekend.
When I first proposed this to the school, since I needed their help reporting. I was met with scepticism. They felt that, for instance, if he hit someone on Wednesday and lost his star he would give up for the rest of the week and would turn into some sort of child sized fighting champion trying to get it all in that week. I really didn't think that would be the case and I held my breath and stuck by my proposal. The basis for this is that when he would hit, he would have great remorse. He immediately would crumble and be horrified at his reaction. If there was a bright side to this aggressive side of my beautiful boy, it was that he would only hit the adults at school. Never a child. He had pushed one or two. But this also led to me thinking he could do this. The school agreed that they would write to me in his notebook at the end of every day if he had earned his star. I sat Daniel down with a chart and wrote out that all the stars = swimming that week. The next week we start over and he starts earning another swim. He was very enthusiastic.
Week 1 all stars earned (even getting a brand new para pro at the last second before school started) Go swimming.
Week 2 all stars earned. Go swimming. (Mom is starting to see that she has committed herself to something here that she can NOT go back on but it's working.
Week 3. Note home. Daniel lost his star. He punched his para in the arm. The para reported that he wasn't even mad. He was just sitting there are he hauled off and punched her. I immediately thought, "this is a test, this is only a test, do not fail the test Michelle, stand by your plan". So when he got home, I braced myself for what was to come when I told him there would be no swimming this weekend because he chose to use his hands on someone. The fit that followed was unprecedented. But I held strong. No swimming. AND the days that followed that week he did not go around hitting people because he had already lost out. On the contrary he said, "I can earn my star today!". So the stars were becoming as important as the big reward. Excellent.
After that test run he never hit someone again until the middle of 4th grade. It was a kid this time. And not to be all,"it wasn't my son's fault" but I'm fairly sure, based on who the kid was, he had it coming. Nevertheless, he lost his swimming. Now we are almost finished with 6th grade and he hasn't lost it since then. We found the right mix of ingredients and come up with a whopper of a result.
That is a lot of background for what happened at our Sunday swim yesterday. I had forgotten that a newly formed autism group rented out the pool from 5 - 7 for a fun "get to know you" mixer. Oddly enough Daniel and I did not arrive until 4:00. Much later than usual and because it normally closes at 5:00 Daniel had gotten out and went to shower. It was only after he was in the men's locker room that I remembered what was happening as a few people were coming into the pool area. A boy who is 17 and goes to Daniel's Thursday swim, and has for the 6 years Daniel has been going, was in the pool. I don't think they have ever interacted. This boy, I'll call him Luke.
I told Daniel that I forgot there was this "party" he had been invited too and that if he wanted he could go change back into his swimsuit and swim some more. He said, "I already swam". I knew that would be the answer. I told him that I had to stay for a few minutes anyway because Luke's dad asked me to keep an eye on him. In a few minutes I asked Daniel if he was SURE he was done, because he could go back in. I was so impressed with how he took this, because I know a year ago he would have been very mad at me for even suggesting the change in schedule. He said, "I don't know yet". A few minutes later he said, "Ok I'll go back in". He stood up, went in the locker room and I swear, he was back out in 15 seconds. It was very "Superman going through a revolving door". I brought Daniel over to Luke, who has a very limited vocabulary and doesn't communicate well, and introduced them. Luke said, "Hi Daniel". I suggested they "race" down the slides, because there are two identical ones side by side. And they did it! They'd stand at the top, Luke would count 1, 2, 3 and they'd fly down into the water laughing. Over and over and over, until Daniel said, "I'm tired, I think I'll rest now". Later, they played catch, then shot baskets in the basketball hoop. For an hour the PLAYED together. It was a beautiful interaction for both of them. I was so overjoyed. Then Daniel said, "I think it's time to go home now." Luke made a very very sad face. Daniel said, "I had fun with you, see you on Thursday". And just like that, I think a friendship blossomed between these two boys with autism. Very fitting for the beautiful weekend we had, with flowers and trees budding all around us. I felt like I was watching both of these boys grow, internally, right before my eyes. It was a beautiful beautiful thing.
Wednesday, April 15, 2009
I like to think I take things in stride. But what I end up doing is swallowing it, smiling and (usually) keep moving forward. Every so often I panic and want to hide under my blanket with a vodka and something and retreat from the world. I never do that. Well at least I don't pour the drink. Sometimes I take a few days and retreat into myself and think. Plan. I joke about the voices in my head. They aren't the kind that tell me to do things but the kind that help me sort out what I'm processing at the time.
We got through spring break doing most everything on Daniel and Zachary's list. We went to Grand Rapids and visited the Grandparents. Spent the day at Meijer Gardens saw Monsters vs. Aliens in 3D (which I highly recommend)I loved watching Daniel keep reaching out and trying to grab the objects that appeared to be coming at us. Once when it appeared that water splashed us all he reached over to my husband and wiped off his shirt and innocently asked, "are you wet?" He is so sweet I can't stand it sometimes. We had our Easter Egg hunt and did Easter baskets. Daniel received the Pinocchio DVD in his basket. I've talked about that movie here before. He was THRILLED. They had a GREAT time. It was cold but the sun was shining. All of the reasons were there for me to be elated and I somehow only felt scroogish and glum. I'm in my funk that starts to creep up on me at this time of year. I never see it coming for some reason and yet it always does. It creeps it's way into my brain. I get short with people and a bit panicky. I find myself having to take deep breaths and count to ten before moving forward.
Maybe it's because it's IEP time, carnival, meetings, knowing summer is coming. Summer is my favorite time of year, but it comes with the inevitable transition problems for Daniel, the questions from him that I am unable to answer (like who will my parapro be next year) and the newness of yet another transition.
I have heard back from the school and they agreed to give him a para during lunch. They added in 25 more minutes of speech in another session and changed the language on the transportation issue. All GREAT news, but I still haven't signed my IEP. I'm still feeling a bit empty and overwhelmed and don't know why. I have a conference coming up in a few weeks that usually revitalizes me and gets me going. I'm hoping once these things are resolved I will once again overcome this melancholy feeling. In the mean time I have to get back to baking my brownie/cheesecake dessert for tonight. Maybe those will help me, along with that vodka and some friends.
Here is our Meijer Garden outing:
Wednesday, April 8, 2009
Daniel woke up yesterday very excited because he knew we were going to be meeting the boys at McDonalds for lunch then going BOWLING. That kid loves to bowl! You would have thought McDonald's was giving away hundred dollar bills judging by the amount of people having lunch. I heard they are one of the few places not suffering from recession. I believe it!
We headed off to the bowling alley. We tried the first game without bumpers and really, everyone was a bit disturbed. I thought Daniel did a great job dealing with the gutter balls. He hates when anyone gets gutter balls! None of the boys were very happy with the "failure" of the gutters, so on game two we put the bumpers up. This really cut down on the frustration for everyone. The screen for the scoring kept getting fuzzy. He felt like the woman on the lane next to him was using his ball. (she wasn't she had one just like the one he was using) All of these things were taken in stride (pretty much) and we successfully had 3 games of bowling.
Today was my turn to drive everyone to bball camp and we were all moving a bit slower today. I was giving Daniel the breakdown of the day and he looked at me and said "I can stay here". Daniel craves independence. We work really hard to give him some. At the end of each school day while I go to the park (4 houses away)to meet Zachary's school bus, he comes into the house, gets his snack, empties his backpack and goes on the computer. If it's a nice day I could be at the park for an hour talking and watching the kids play. He does fine on his own. My question is this. When do you start giving your kids the independence of staying home on their own? There was a moment this morning when I paused and thought, "why not?" 99.9% of the time he'd be fine. I'd only be gone for 30 minutes. Instead I rushed him through his morning routine. We were waiting at the door while Daniel was making his bed. He can't leave without doing everything in his routine. It's that .1% that gets me. If an alarm went off, a fire stared (I know, I know all highly unlikely) what would he do? He wouldn't call me. He doesn't use the phone like that. This is something I would have to make sure he could do, call a cell phone and/or 911. I wouldn't want him to call 911 inappropriately, but this is something he should know how to do anyway.
When, if ever, have you let your kids (with autism or not but tell me either way) stay home for short periods on their own? I know it's different for kids on the spectrum, depending where they fall on that spectrum. Is it acceptable to do this? Why or Why not? What suggestions do you have for things he should know first. I'd love to hear from you.
Monday, April 6, 2009
I have mentioned dooce.com before. It is a very popular site that has nothing to do with autism, usually. Heather B. Armstrong, the author, is currently on a book tour around the country. She is rather successful and I enjoy reading her. She also takes part in "momversations". I have found many of these momversations quite interesting. It is different blogger moms who each tape their views on a topic. This one is about, vaccinations. Oh boy. This is a big one. It has become quite the hot topic. I watched a Dr. Nancy Schneiderman on The Today Show get so worked up about vaccinations I thought her head was going to spin completely around. First, the video.
As always, I have my opinions. When people find out I have a child with autism, I would bet half of them say, "do you think vaccinations caused it?". It is so hard for me. My answer is such a wimpy non answer and it's "I don't know". Daniel definitely went backwards in his development. He developed speech then lost it. Until age 2 he ate everything put in front of him, then stopped. He didn't tantrum all the time, then he did. He CHANGED, at about age 2. I remember, probably more than others, exactly when he got his MMR injection. For those of you who don't know, it is the MMR (Measles, Mumps, Rubella) shot that is the one with all of the controversy. I remember because we went to the allergist office to have it done. Daniel had tested positive, but not very high, allergic to egg. The MMR vaccine contains egg, so he had this shot in a controlled environment able to help if an allergic reaction occurred. He had no noticeable reaction on his arm. No reddening, nothing. It was a significant amount of time after that he changed. I really don't think it was in direct correlation to that vaccine.
I HAVE, however, heard stories. Lot's of stories. I'm not saying they aren't true. Not at all. Some have sounded true enough to me to put the fear of God into me. Parents who gave their kids the vaccine, then they lost their child little by little. They worked and worked and the child had speech, then they got the booster at age 12 and it was gone again. I don't know if this is the autism urban legend or what. It was a friend of a friend. I've read all the studies. Total honesty here, I have not given Daniel his booster. I just can't bring myself to do it. What if something happened? Could I live with myself? Could I watch him regress in front of my eyes again? It is gut wrenching to me. I completely understand why the moms on this video wouldn't understand this. I don't, however, understand why if they are vaccinating their children, WHY they would be so emotional and upset about it. Their kids can't get the measles. So why judge? I have sat CRYING in the Dr's office about this. I have talked to the Dr. on the phone about it, with tears streaming down my face. It is a hard decision. The obvious flip side is, what if he gets the measles? That's the question isn't it? He could die from any of those diseases. But most likely not. I have yet to find the answer. It angers me that we, as parents, are put into this position. For the people who have been shown that they "fudged" their research, it infuriates me that you would plant that doubt into my head.
The people who anger me are the people who have no reason to be afraid, but listen to someone like Jenny McCarthy who goes on her book circuit saying vaccines did this to her child. She says "she knows". She does not KNOW. She thinks that is the case. I guarantee you there are people out there who then say, well, we aren't going to give that vaccine. Because an actress THINKS she KNOWS something. She is a parent just like you and I. But she has pull, she has a louder voice because she can go onto Oprah. I don't think it's right for her to scare people when she doesn't really KNOW. I've had people ask me if anyone has ever written a book about autism, as a parent, besides Jenny McCarthy! There are 100's maybe thousands. But people only know HERS.
It isn't just people who are scared of autism who aren't vaccinating. Plenty of people do it for religious reasons. I know several families of chiropractors who haven't vaccinated any of their children. It's what they believe. Why is no one mad at them??
I'm going to fess up that Zachary hasn't had his MMR vaccine either. BUT he has an anaphalactic reaction to eggs. He can't have it. Part of me feels that this is a blessing. He can't have that vaccine because of a medical reason and it's an acceptable reason. I don't have to decide. Thank God. At this time we don't have an alternative. He has had all the rest of his vaccines.
Dr's say they KNOW it doesn't cause autism, some parents say they KNOW it does. Some of us, like me, are caught somewhere in the middle. The Dr's are frustrated with us that we are scared, the parents who we don't agree with think we are traitors, and there are parents who are mad at us for not vaccinating our kids. Who's the winner here? I'll tell you, NO ONE! I hope the answer will be known someday. Whatever it is, I really hope we find out what causes autism. Not because it should be "cured". But so this madness, finger pointing and blaming can STOP, and we can get to the business of taking care of our kids, to the best of our ability.
So if you happen to find my little blog Heather B. Armstrong. I hope this gives you some insight. You said you didn't understand so I wanted to try to give you and everyone else in your shoes a glimpse of the why, at least my personal why. I'm sure there are a million whys out there. You are welcome your opinions we all are. I hope this helps you understand a little bit the pain that this topic causes. You can never understand entirely until you have seen your child slip away from you and I hope that is something you never ever have to know, for sure.
Yes that's our house with the giant inflatable Sparty. We had the Spicers' over and took the above picture at halftime on Saturday. Daniel would not watch the game because of the fear of the "evil Belle Tire guy". But I have to say we've seen an improvement. Daniel had a great time "helping" Todd set him up in the front yard. He was very into the hoopla of the weekend and people driving by and honking at Sparty in eager anticipation of the game. I really think he had fun.
Zachary started his basketball camp today. It's from 9 - 12 everyday. So I told Daniel we would go somewhere, just the two of us. He chose Treehouse Toys to go look around at everything. He is waiting for me now, to go and do this. One thing is for sure, he will NOT let you forget a promise!
Currently everything outside is covered in SNOW. I was afraid this would be very upsetting. A good portion of yesterday afternoon Daniel was extremely agitated. I know it's because this weather front was coming in. He feels it and gets very upset. I warned him of the snow that was coming so when he got up this morning came he wasn't TOO shocked. Luckily I was still snoozing away in bed, so he got to endure this shock, alone!
Yesterday when some things were going badly we started saying all of these silly sayings, that come from a book he loves "One, Two, Three, Oops!" Whenever something happens the father rabbit in the book is getting more and more upset and yells these silly things like "oh noggin sploggin". Daniel thinks it's HILARIOUS and once he gets going he can't stop. He hurt his foot swimming yesterday and was screaming bloody murder in the pool. All of the lifeguards came running to see if this child was seriously injured, because by the sound of it you would have thought he was on the brink of death. I talked to him and I actually (?) got him calmed down fairly quickly. He took a few deep breaths and listened (!) to me. He showed me where he hurt his foot (he slammed it on the bottom of the pool jumping in RIGHT after I told him he wasn't deep enough!). I for some reason said "oh, Noggin sploggin, you hurt your foot!" and he totally flipped around. Now he has been saying it about the snow. I admit, that book drives me crazy, but I think, for now, him laughing and saying noggin sploggin, boodle doodle, grizzly wizzley, is better than having him yell at me and tell me to "get rid of the snow". My response always being "Daniel if I could get rid of the ?#%! snow I would!" Ok, I don't SAY the cursing part, but I definitely, definitely THINK it. Especially on April 6!
So here's my question, do your children have a silly saying that can help turn them around?
Friday, April 3, 2009
We went to SBS first, which is literally across the street from the gallery. How easy is that? SBS was HOPPIN'. Wow they were restocking those final four racks as fast as it was flying off. Recession? Not in EL today! I overheard college students calling their parents and asking if they could use their credit cards! Really. It was awesome and the excitement in the air was palpable. Daniel was distressed because there was a TV on with basketball on it. You know what that means. Fear of the Belle Tire guy. I have to hand it to him though. He stayed in there. He didn't cover his ears and run out. He held it together. He was mad, don't get me wrong. But he hung in there. We bought our t shirts and face tattoos, paid and headed to the gallery.
I KNOW some of you are thinking "I could never bring my autistic child into an art gallery." Well, I'm here to say, at one point, I couldn't have either. But now, he loves it. We walked through the door and Daniel said, "It's QUIET in here. . . . too quiet" (Monsters Inc quote he said) then looked at me and said, "we have to be quiet in here." When I saw the hand blown beautiful vases set out around the gallery, the only thing I did was take Daniel's coat from him so he wouldn't keep swinging it around. I stuck by him and Zachary mostly wandered on his own. He was really taking everything in. Daniel and I looked at Raku pottery, oil paintings as well as the Dr Seuss exhibit that is there right now. One oil painting Daniel particularly liked and he looked at me and said,"can I touch it?" I said that really wasn't a good idea. And he didn't.
We had a wonderful afternoon looking and talking about the different art. Zachary was explaining on the way home that he wanted to recreate some of Seuss's sketches and bring them back to the gallery for a comparison. I thought it was a great idea.
So internet. I'm here to tell you, things change. Our kids mature. It is possible they won't always be a flurry of destruction. While Daniel doesn't seem to be able to create art he has an appreciation for it. When you are that visual, color and texture mean a lot to you. He knew how to behave in this situation without any talking about it ahead of time. We weren't even planning on going there! We changed the schedule, enjoyed the gallery, the entire gallery and had conversations about it. If you would have told me that 6 years ago I would have NEVER believed it. For those of you at age 5 or 6 or even younger. Keep doing what your doing, one foot in front of the other. You never know where those feet can and will take you.
Over the last weeks, knowing that spring break is coming, Daniel asked a series of questions. The first being, "We're going to Florida." Which is his way of asking if we are going to Florida. Despite my searching the web every other day trying to find flights that my head deemed "reasonable" we never booked anything. We can stay at my Aunt's lovely house in Sarasota, 8 minutes from the most lovely beach I've ever seen, with a pool in the back yard, but I couldn't bring myself to fork over the money for the plane fare. If you are asking why we didn't drive you have OBVIOUSLY never been with our family in a car. Honestly the worst one is probably ME. I hate riding in the car. Daniel completely balks at long rides and the first question he asks when getting into the car is "how long is this going to take" even when it is going to the grocery store. 24 hours probably wouldn't go over well as an answer.
On a side note, it is now 10:20 and my nine year old is moping around asking what ever will we do? I suggest calling a friend in our neighborhood and he replies "sigh, sigh, it's too early" Good GRIEF! Said 9 year old has already eaten a bagel, sausage, soy yogurt and is now making toast because he is STARVING. On a school day he'd have stopped at the sausage and been happily working on MATH! He's been up for an hour and a half. argh.
After Daniel was told repeatedly that Florida was NOT on the agenda for spring break, he shifted gears and started saying, "on spring break we are going to Avalanche Bay." Again, not true, but wishful thinking. We did do this LAST year and had a wonderful time. After numerous shots at this power of suggestion tactic. He switched to "on spring break we are going to Meijer Gardens". Talk about low expectations! It really is a nice place to go to. Well, actually I've never been there, but my children have been many many times. Apparently Daniel, who enjoys outings, (as long as they aren't too far) is looking for something to do. We aren't even half way through day one and I have sighs, questions and complaints. It's raining. Of course it is. I remember being one of the few kids home one spring break as a kid. It inevitably snowed, it was depressing thinking of everyone in Florida. For some reason everyone from Michigan goes to Florida. I guarantee you that half the cars headed south on I 75 have Michigan on their license plates. I get it. I guess it's up to me as the mom to try to come up with some fun educational, cheap experiences in a cold, wet city. Doesn't sound too promising. Maybe the motivation of having the blogosphere judging me will help my creativity. . .
Thursday, April 2, 2009
Yesterday I sat down with my cup of coffee, turned off the tv and computer snuggled up on the couch with my chenille blanket (only to rip it off at the next hot flash as they've been plaguing me for months now) and read the IEP from start to finish. I made notes on post its (so when the draft went away, my notes wouldn't as per mama mara's suggestion) I came up with several points. I'm just going to paste in the email I just sent to the appropriate players. Here is what I sent (I have taken out some specific names of schools and street names to make it more general for the internet)
Good Morning, Here are the things that I have found that we feel need to be changed with Daniel's IEP. I don't know if this will make sense to those who haven't seen the whole IEP or if you haven't ever even seen one. But these are my points.
1. Functional Performance:
He currently "participates independently in lunch and recess" this is true that currently he does, but we would like that changed. We would like to see Daniel have para support during lunch. This has been the one area at (current school) that he has had difficulty and coming in during 5th grade he had a very hard time. There was teasing from the students who didn't know him and even some from those who did. Some of the kids who had been with him for years were picking on the easy target while they were trying to deal with their own anxieties of a new school. We feel this will be even more likely going into middle school. Daniel will also be quite anxious trying to find his way and doesn't know how to navigate this very social situation of trying to find people to eat with etc. He is just working on starting conversations and navigating a middle school lunch room is a very big undertaking for anyone, not yet Daniel. He has even had an occasion recently that peers were "fanning the flames" with him during lunch. Without para support with him we feel he will be not only lost, but a target.
2. Supplementary Aids/Personnel Supports:
Under para Educator support there are times for (current school) 8:55 - 3:48 entire school day. Shouldn't we add another line with middle school hours with entire school day?
3. Present Level of Academic and Functional Performance:
His birthday is wrong at the top of the page. It should be 1996 for the year :)
Also here, the lunch support is mentioned.
4. Special Education Programs/Related Services
Speech. As I mentioned in an earlier email we are requesting additional speech services beyond the 45 minutes per session, 3 -4 times per month. This is only half of his current services. Of any service he receives (besides para educator support), we feel this is most critical. He needs so much work on his conversation skills. Without those his ability to function in the world will be severely altered. We feel very strongly about this. Daniel currently gets 60 - 90 min. per week PLUS we pay for an additional 60 min. group session outside of school. With the addition of this 60 on top of 60 - 90 min per week we have seen a big improvement and have received numerous comments from the staff of his expanding skills. This wouldn't be a good time for the district to cut back on speech services. He is responding positively to his sessions and it also seems to alleviate some of his frustrations with communicating. We will be continuing our extra 60 min per week indefinitely at this point (and through the summer). So we are requesting one more session of 30 - 45 min in length that could happen during his academic support hour.
Do we need to write anything in for this? In my perfect world I would like the gen ed bus to have a closer stop so that Daniel can safely get on the bus without having to cross (major busy highway) or walk up (busy secondary) road to (next street). Ideally the bus would pick up at (next street) and turn into our neighborhood and pickup on our street. This would take very little time. Daniel is always prompt and would be waiting for the bus. He also needs the seat behind the bus driver to be reserved for him and this should be written in the IEP. It has been in the past.
Thank you so much, we look forward to hearing from you.
That's it. I've never asked for this much change before. I'm curious to see what will happen. Today is the last day before spring break. I doubt we can get this hammered out today! So we will go over the 10 day period.
I mentioned to my walking buddies today that I had put these changes off too long. They countered that I was "processing" everything. I do believe this to be true. I don't think I would have asked for more speech had I signed earlier. I said in an earlier post that something was bothering me and I didn't know what it was. Well I think that was it. There is just so much information it's overwhelming. I don't know what other IEP's are like but mine is 20 pages long. His supplementary aids and services are two solid pages. It's a lot. Meanwhile I asked my walking buddy who is a nurse why with my hot flashes I'm getting chest tightening and feel like I'm gasping for air, she alluded to the chance that it is a bit of a panic thing and being overwhelmed. I tend to show a very calm exterior and panic inside (where I don't even know that I am!) and I guess that makes sense. I'm glad I'm getting some exercise again. I think it will help. I can hear that clock ticking. . . is it the hot flashes or the IEP deadline? Maybe both.