Gratitude

Some of you know that I have been working as a paid advocate for the last 15 months.  It's been filled with some very high highs and some very low lows.  I can't, of course, write about any of it here because of privacy.  I recently had an article written in our United Cerebral Palsy Newsletter it is on page 2 under the "Learning the ABC's of IEP'S".  They asked me for a parents name to interview and this is the result.  (Names have been changed) I must say, I was very overwhelmed at the final result.  It is always a good thing to hear that the work you did was appreciated and worthwhile.  This was a happy ending, and one of the first families that I had ever worked with in a "job" capacity.  It felt good.  In fact, often when I leave meetings with parents that went well I get a RUSH of adrenaline.  I like it. 

Unfortunately they don't all go that well.  Surprisingly, most do, but recently I have had a really really tough one.  It is working with these tough circumstances that, if nothing else, make me take a look at our family and remember how darn lucky we are.  I know that.  But a nice reminder every so often doesn't hurt! 

It was after a particularly hard meeting that I went home, slightly in shock at what I had witnessed and began reflecting on the circumstances with Daniel.  What if Daniel was born to a different family?  What if he didn't have parents constantly fighting for him?  What if he was born to a family with no resources? What if he went to a school district that wasn't so supportive?  Where would he be?  If you put the exact same person into these different circumstances, what would happen?  Would he be in this same situation?  Would something within him persevere?  These questions tend to haunt me.  And during this week, it literally made my stomach hurt.  Part of it was the fact that I had had the toughest meeting to date.  The other part was that the day after this meeting I attended a student of the month ceremony at the middle school because Daniel was being honored.  That's right.  Daniel was STUDENT OF THE MONTH at his middle school.  He's in eighth grade, and doing so well!  I am so proud of him.  What an honor!  Daniel was nominated by his English teacher for always being kind to others, complimenting people (thank you speech teacher!) and always working his very hardest.  Which he does.  Every single day.  He earned it.  The best part was he was so proud of himself.  (He is never lacking in that department!) 

His dad and I went early to the middle school with him.  They had bagels and orange juice for the families gathered in the cozy, well stocked library.  There was a big crowd of parents and teachers who came in early (7:30 am) to observe.  A teacher read the letter written to nominate each student.  They each received a certificate from the school and one from our local senator and most importantly a gift certificate to Tasty Twist!  It fills my eyes with tears just thinking about it.  I was so very proud.  I know how hard he works each and every day, sometimes to just get through the day.  Even with all of the sensory overload and distractions, he still manages to buckle down and finish all of his homework in academic support, every day.  No one is making him do that.  In fact, at the open house at the beginning of the year, the teacher for that class said "they won't get all of their homework done in here", to which I could only think, "you don't know Daniel very well....yet".  He will bust his butt not to have to take anything home with him.  Natural consequences and his own reward system. 

But with all of that pride came a sadness thinking about this other child.  As I drove up to that school building I had a moment of wondering if google maps brought me to an old abandon building, only to realize, it hadn't. This was indeed the school.  I'm not naive.  I know what it's like out there.  But it was the huge contrast of that week that made me wonder and weep.  What if these children had switched places?  How would it all turn out?  I have had many dreams about it over the last few weeks.  It is something I will never know the answer to.  I can only be thankful for what we have been given and grateful that our work with Daniel (up to this point) has been successful and look forward that just maybe some of my work can help some more families out there.  I can't ask for much more than that. 

The Good, The Bad, and the Ugly

I seem to barely be keeping my head above water. For me stress seems to come with MIGRAINES. So that is one thing I've been fighting. Migraines they make me lose entire days of time, which puts me further behind, which makes me more stressed. You see my problem here. . . So here's a little update of some good, and not so good things from the past week.

Good: Daniel's MEAP scores came in the mail. MEAP is the statewide achievement test here in Michigan that everyone takes (except for you IEP savvy people who take the MIAccess,) Daniel took the MEAP only in math this year, because we thought that would be the most appropriate test for him. Testing him is not always easy, and he gets accommodations for it, like more time, a different location etc (write those in the IEP folks!). But still he usually doesn't do well. I know that the testing doesn't always show his true levels of achievement, but the scores can be gut wrenching to see. They usually get glanced at and filed away, far away, so I don't have to see them. It's easier to go to my happy place of denial that way. But not this year! He went from a 4 (not proficient) last year to a 2 (proficient for 7th graders!) this year. This is in comparison to all 7th graders in Michigan!

Bad: In Daniel's Resource English class there has been three parapros available to assist a class with very high needs. One was just pulled from the class to be put into another class, and it was Daniel's long time parapro.

Good: I had a very good conversation with the special ed. director. This was after talking to teachers, vice principals and principals. She understands my concerns and has assured me that if Daniel starts showing frustration and falling behind (after making so much progress!) that they will reassess the situation. I have known her a long time and I feel confident this is true.

Bad: Daniel was screaming on the bus last Wednesday and hitting himself because the natives (teens) were restless and acting like caged animals. i.e. hanging out the windows, arms flailing around similar to chimps at the zoo reaching out through the bars. This, not too surprisingly, stressed Daniel out. The bus driver was trying to get the kids under control. They wouldn't listen (and refused to raise the windows?!) which made Daniel even more upset. The vice principal was called out and he had to RIDE THE BUS WITH THE KIDS. Daniel recovered part way home since the bus was SILENT (a "request" from the vice principal). I then received an email explaining the situation from the vice principal.

Good: This lead to a brain storming session about giving Daniel something to concentrate on while on the bus. If he is in noisy situations (like a sporting event his brother is participating in) it helps for him to have something else to concentrate on. Like his "DS" (Nintendo DS). When I asked him what would help him on the bus he answered "my DS" which was immediately shot down by me. I fear him losing it or kids would want to see what he is doing and hang over his shoulder. This would NOT make him happy. During my conversation with the special ed director. She immediately offered up an MP3 player for him to borrow. We loaded it with music from Fantasia and so far, he is ONE HAPPY BOY! It has worked like a charm! It is very relaxing for him and the music makes him happy. Now he can ignore the caged animals if he so desires...

Bad: A friend let me know that her daughter reported that she witnessed some kids harassing Daniel in the hall and frustrating him to the point of him getting upset.

Good: She stepped in and stood up for Daniel

Bad: They didn't listen

Good: This led to topic number 3 with the Special Ed director and she was very upset about it. It seems that is it is being taken very very seriously by the school and we are working on it. When I had dinner alone with Daniel last Thursday we had a conversation about his morning routine. (an entire conversation!) When I got to the spot where I thought the harassing was occurring I asked him if people ever bother him. His answer. "Sometimes". Which makes me think that it happens with some regularity.

Bad: While talking to the special ed director about this I was crying the ENTIRE time. In my defense, I was also in the middle of a migraine day and was not handling anything very well. It was an ugly cry too. Not a few tears, but all out crying.

Good: She was extremely kind, especially when I asked if she could please just ignore my crying and continue on with the conversation. She was very sympathetic. We have known each other for many years (long before she became our special ed. director.) I have always felt a connection to her and I think that is reciprocated. She immediately called the social worker at the middle school to get to the bottom of this issue and delivered the MP3 player to come home the same day!

I talked through this with my friend afterward. (crying again). This is the friend who's daughter stood up for Daniel to several kids. This girl has the self image and strength as a 7th grader to do what is right, for someone she cares about. Not only is she amazing, but her parents are too, for raising such a child. I am starting to sound like a broken record but I am very lucky to have them in our lives. As I was crying to her on the phone, and complaining that I can't stop crying when talking to someone like the special ed. director about an emotional issue, or in a meeting in front of people and she said something that made me pause. I'm sure I will never ever forget it . She said, "You cry the tears that he can't cry for himself and you get the job done and make it a better world for him."

Wow. What a powerful statement. I said, "that's beautiful and I'm stealing it from you". Which I am! That is honestly the most lovely thing I've ever heard anyone say. I wrote it down immediately so I'd get it right. I'm glad I did because I only remembered the "you cry the tears that he can't cry for himself part". I had completely forgotten the last half about making it a better place for him. I guess I had forgotten that part, because in terms of that, what choice do we have as parents? In my opinion, that is why we are here, and I know that I will always do that. Sometimes when we are having a hard time with Daniel, I think back to about 5 days after he was born. He was a very sick little boy and was in an incubator for several days receiving oxygen and medicine. It had been a long week, but we knew at that point he was in the clear and recovering. I was sitting in my special room at the hospital for mom's whose children are sick and still admitted after the mom's are released. They give a bed to you and you can stay in the hospital to be close to your baby. I was holding him in that room and looking into his face and I clearly remember promising him that I would be there for him always, I would be there to protect him and help him with everything, that I would do whatever necessary to help him. It was a different feeling than with my other son. It is almost like I knew that the hard part wasn't over and it was going to be a long long road with Daniel. But I have kept my promise to him from that day. I always always will, through the good, the bad and the ugly.

Weekend of Beauty

This weekend has been quite a monumental one for Daniel. It started on Friday night with the annual Silver Bells celebration in Lansing. I'm not sure how this celebration started but essentially it kicks off the holiday season. There was much debate between the adults in the group that I watched it with, but I believe it is the Friday before Thanksgiving every year.

It starts with a sort of Electric light parade. The floats are all covered in lights, not only is this beautiful but essential because it is getting dark here at 5:00 pm every day! Daniel has his favorites from year to year, the top of the list is the double sized city bus that looks like a caterpillar and the "Christmas train". Santa is riding on one of the floats. The excitment in Daniel's eyes it just priceless and he was singing Christmas carols at the tops of his lungs through most of the parade. When the parade is over they light the Christmas tree in front of the state capitol followed by fireworks over the capitol building. We go to our friends conference room in his office building to watch the fireworks which gives us a wonderful view of the show. Daniel, as always, was yelling "Magnifique! Bravo!" The 3 year old next to him was echoing every word, which was just adorable.

It has become a wonderful tradition to go just a few miles to our state capitol and kick off the season this way.

Saturday night Daniel was invited to a birthday party! It is his friend Emma who lives down the street. She and her family have just been wonderful to Daniel and our whole family. I feel so fortunate to have them in our lives. Emma turned 13 and had "a garage dance party". Daniel was walking around saying, "I'm so excited to go to Emma's garage dance party" over and over again! We weren't sure how Daniel would do at the party with the noise and 30 middle schoolers being crazy for 2 1/2 hours but he had an incredible time. It was from 7:30 until 10 pm. I was graciously invited to stay to keep an eye on Daniel and be there to help if he had a hard time with the noise.

When we arrived the kids were in the garage popping all of the balloons that were throughout the space. This sent Daniel back into the house (not only him there were other kids who felt the same way!) Once the balloons were all popped it was an "all clear". The lights went out, the disco balls went on along with the ipod attached to two huge speakers and the dancing began. I have to say it was a lot different than I remember the 7th grade parties I went too. I have memories of girls literally stuck to the wall on one side of the room and the boys on the other and never really moving the whole night long. Here, they were all intermingled, under the watchful eye of parents, enjoying themselves. Daniel, who has no inhibitions whatsoever, let's loose when it comes to dancing. He is the bumper sticker that says, "Dance like nobody's watching". I wish I had a just a small amount of that. To not care what anyone else thinks can be a good thing sometimes.

When Emma's dad turned on the lights at one point, Daniel responded how they all did, with a loud "awww, what are you doing!?" Apparently, at one point the kids were all in a circle with people taking their turns with solos in the middle, with cheers from their peers. Daniel took his turn in the middle of the circle to chants of "go Daniel, go Daniel". I, unfortunately, missed that part, although Todd was there to see it. And he hung in there! At about 9:40 I looked at him and could see how tired he was becoming. We went back into the house for a break. He looked at Elizabeth's gorgeous gingerbread house (that is a replica of her house) that is just amazing. He loved the gingerbread house so much and she loved that he appreciated her work! Here is a picture of him taking in the house.

It was truly a magical weekend for us, but especially for Daniel.

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!

What is he trying to say?

Yesterday, we took another tour of the middle school. The day wasn't starting out very well when I reminded Daniel of the plan he got quite upset with me. There were angry faces, pounding on the ottoman, maybe a few slaps to his own head. Hmmm. This made my heart sink. When I asked him what was making him feel angry, I got the usual answer. "I don't know." He doesn't know. This is an on going problem for us. He just can't put his finger on what is making him angry in a situation. If he could say, "I'm nervous about it" or "it will take too long" or whatever, I could help him with the problem. But he doesn't know. He just knows he's pissed, leaving me with my constant guessing game of "what to do next?"

It's a game with which I've become quite proficient, to be certain. I feel I am very in tune to what he needs. I have to admit, he took me by surprise yesterday. He has shown very little anxiety about the transition and has taken it in stride thus far. I knew one thing, I wasn't backing out. He was going. I was hoping our trip would give me some insight on what the issue is.

When we arrived Mrs. Social worker was not in the office so the secretary called her over the p.a. system. Zachary was also not a fan of going and he had brought a book and was planting himself in the waiting area so he "didn't have to walk around". Oh, he has it SO rough, doesn't he? Fine with me. When we were waiting for the social worker/tour guide Daniel draped his body across the desk and just stayed there.

Me- "Daniel are you tired?" (just a lucky guess!)

Daniel- "a little".

Apparently, climbing millions of stairs at Avalanche Bay the previous three days was taking it's toll. Of course I DID realize this. He did not sleep in, as I had anticipated. He was too excited to get up and get his computer time that he had missed out on over the days. I suggested he might want to peel his body off of the front desk and sit in a chair. He did stand up but the schedule for the school caught his eye. I pointed out (again) that school starts at 8:10 not 8:55 like last year. It gets out at 3:04 pm not 3:38 (sharp! as he used to say) like last year. This REALLY caught his attention this time (Yes!). The other biggie. Lunch is at 11:00 instead of 12:30. 12:30 which he has pretty much maintained throughout the summer. These times are very very important to Daniel. We discussed them at length while waiting and then I took his picture in front of the sign in the office. He's so cute.

When Mrs. social worker came into the office she mentioned that she had to find his locker combination, and as she was walking away Daniel quietly rattled it off. She looked for a decent amount of time as Daniel kept glancing at me with annoyance, "Is she still looking?". I KNOW he was thinking, I JUST told her what it is, why is she looking? But I said nothing. When she victoriously came up with it, she said, what did you say it was Daniel? He repeated it flawlessly. Impressive. I knew it too. Numbers are my thing to remember. I was staring at the secretary thinking, "I have no idea what her name is". Not a clue. But his locker combination from a week ago. No problem.

We headed up the stairs and were letting Daniel lead us to the direction of his locker, which he easily did. He worked on it a few times and it was pretty obvious that he had it down now.

He dragged his feet down the hall toward his first hour class, computers. Saying "math", "science" on the way as we passed a few rooms. Now it was clearing up for me. He already knew all of this, why did we have to do it AGAIN? That's why he didn't want to come. The boy hates repetitiveness. Now I get it.

We did enter his computer class which he seems excited about. I again stated that I wished his para was there to tell us which would be the best seat for him. Then I realized, DUH. ASK HIM. People don't ask HIM enough of the time, including myself. I'm trying. He is really pretty capable of telling you. If he doesn't know, he'll say so. So I asked him, "what would be a good seat and computer for you Daniel?"

"Right here." He went right to it. He had probably been thinking that all along, but he doesn't speak up about it. It was across the aisle from the teacher's spot (which is a very tall chair so he can see the students screens), in the back (he doesn't like people behind him very much) and closest to the door. Perfect. Mrs. social worker is passing the information along to the computers teacher. Then we left. Quick. Mrs. social worker and I both realized he was set. We aren't going back until orientation day, August 31, when all of his peers will be there too. Things will look different with halls full of highly anxious, hormone filled kids. But Daniel's ready. Even if he couldn't quite tell me that in the morning when he got angry with me. I get it now Daniel. Welcome to 7th grade. You are growing up.

Back to Reality with the Boogie Woogie Sheep

We are back to reality. Even though it is only August 14th I'm in full on school mode. Classes don't start until September 8th, but Daniel has a big transition this year and everyone is working to make sure it goes as smoothly as possible.

I returned from vacation to have a meeting with the social worker and the new principal. (She was the assistant principal last year) to discuss the proposed schedule changes. I had blogged before the eastern trek that the schedule we proposed at the IEP wasn't going to work. It wasn't logistically possible. He is in 7th grade this year with 6 hours and switching classes every hour. There are only so many options each hour and it didn't work. I applaud them for calling me in JULY to let me know and bringing us together to work it out. I ended up going with their recommendations. They obviously went about it the right way, because at the moment I'm feeling better than I ever did about the original schedule. I always had unresolved issues with the original schedule that I couldn't quite explain. It wasn't sitting right in my gut. I believe I expressed that here months ago. Those feelings are gone. I am a true believer in my gut. It is never wrong. The times I'm wrong I go against it or I can't find another option. Afterward I'm always all, "I knew that was wrong, why did I do that?" So, I'm feeling ok now.

This is now how his schedule is laid out.

1. Computer applications (new as of this week. Daniel and I are excited. What a great way to start his day) Apparently this teacher (male) is great and gets lots of "our kids". I'm going with the recommendation.

2. Co taught Science. Co taught is the new way in our district. They are general ed classes that also has a special ed teacher in it. It's expensive for the district, but the best of both worlds. PLUS his para will be in there. That makes 3 adults, at least. In at least one of his co taughts there is another para, making 4 adults. Nice.

3. Co taught Math, pre algebra.

lunch

4. Reach. This is a half hour time that all kids have. You can get help with subjects, may have social work time etc. It has a teacher during it, but is sort of a down time.

5. Band. Five days a week. That will be a huge change. That reminds me, I have to email the band teacher about an instrument...Band was a must have and part of the reason his schedule wasn't super flexible. Not negotiable.

6. Resource English. We are concentrating on reading this year. His understanding of language is very poor, even though he presents differently. He can read words at grade level but comprehension is testing at 3rd grade. Usually with a concentrated effort we have been able to help bring a subject up. The problem is you can't concentrate on everything at once, so you have to pick and choose. We are choosing reading as the main focus. He has always been with his peers for English for the socialization part. This is a big change.

7. Academic support. The same special ed teacher who is in his co taught classes and reach is in here. Daniel can do homework, maybe speech 2 days a week for part of it, organize the day, reteach or preteach math for the next sections, get things ready for home.

Notice no social studies. We dropped this for this year. See the language in #6. It all goes completely over his head. My hopes and dreams are we get his language up and this can come back. A girl can dream.....

We spent part of the morning at the school yesterday. I brought Daniel and a very reluctant little brother to the middle school for a personal tour. We got his locker assignment which this year there involves combination lock. He practiced it on two different occasions during the tour, many times, without a whole lot of success. I can tell, he'll get it. ALL kids need practice, I KNOW I KNOW. Everyone says this to me. The thing is when all kids need practice Daniel needs 10 times more than they do. His fine motor isn't great. He has the combination memorized. He told it to me last night! But he can't get it from his brain to his fingers. Road blocks. Disconnects. It's amazing to watch it at work. How frustrating to know something and not be able to get it to happen. But he will. I know it.

We walked around to all of his classes. His English teacher was even in so he met her. It was one hour and he was visibly EXHAUSTED afterward. His gaze was diverted, his eyes glazed over and he looked like he was about to shut down. Then the principal came up and introduced herself to him. He was done, which she didn't know of course. I was impressed that the social worker who really doesn't know him, caught on and immediately said, "he's taken in a lot and I think he is done for now!" The principal was kind and wanted to make a connection. She said hello and shook his hand. Daniel then started talking about..... "The boogie woogie sheep".

Principal-"I don't know about them"

Daniel-"they dance"

Sigh. His first interaction with his principal was talking about the Boogie Woogie sheep. Now that I think about it, he was saying he was tired and I realized he went the whole tour NOT talking about videos etc, which is perfectly appropriate. But his limit is usually an hour and that's how long we were there. Which is giving me an idea....More on that later. If you are interested, here is the video of the boogie woogie sheep. You can see how he would have thought of this in his exhaustion. Ernie is keeping Burt awake and it's frustrating Burt. It's amazing how his mind works! At least the school has some idea what to expect!

Being Connected

As I was minding my own business on vacation last week and trying not to confuse myself by planning for my next vacation which was to start three days after I get home from this vacation (I know, tough life right?), I obsessively checked my Blackberry for the 1,497Th time. Yes, I have a "crackberry", so aptly nicknamed. Last fall I went into my local Verizon store because my phone contract was up and I'd been getting all sorts of tempting "deals" sent to me. I had 45 minutes one day before I had to pick up Daniel and I dropped into the store to see what they had. I had no intention of upgrading to the Blackberry. Nevertheless, the beauty and actually, practicality of the whole thing sucked me in. The fact that it was pink had NOTHING to do with it. Really. I walked (ran) out of the store in a rush to pick up Daniel on time with a new Blackberry in hand. I am not an impulsive person, so this came as quite a shock to my husband. I tend to research things to DEATH before I buy anything. I wrestle with the price in relation to need, I drive myself crazy. But committing myself to a 2 year contract with data plan, apparently wasn't a problem for me. I had a bit of buyers remorse afterward, but mostly, I love my phone.

On many occasions being able to quickly email people during a meeting has saved a LOT of time. I love the calendar and always having it with me to coordinate and not have to get back to people after checking it at home. It works for me. Add the laptop onto our list of electronics and I now check email more times a day than I'd like to admit. Add in facebook and I am connected all the time to every one I know. Frankly, I like it that way. Oh, I understand the downside of these things. I can't tell you how many times during a meeting that I am thinking, "don't check your Blackberry, don't check your Blackberry, it's rude". I, mostly, don't. It has come in handy keeping in better communication with the school. They know I'm fairly easy to reach.

So when I was in Charlevoix this week and checked my phone/email, the last thing I expected to see on a mid July day was an email from the middle school that Daniel will be attending this fall. His coordinator emailed me and wants to meet this week, with possibly the special ed director, principal, myself and her. I read the email over and over. I couldn't quite wrap my brain around it. My head was in a different place. It was in northern Michigan at carnivals and parades. How am I supposed to think about his academic schedule for the fall? That's what the email was about. His schedule. There are several phrases starting with "we took the recommendation...." "we took a second look....." "based on our meeting.... "In short, they changed the schedule we came up with in our IEP. I have read and reread the email many many many times. I finally emailed her back on my trusty Blackberry from my in-laws vacation home saying I couldn't just go ahead with it. I did need a meeting. I would be home for 3 days before I left again for another vacation. I asked for his teacher from last year to attend. I don't know if she can. I feel like she can give me good input on if this is the right thing for him. We had him in both resource and a co taught math class. They got rid of resource math and put him in a computer's class. He has an academic support and they feel like he can get enough extra support in here for both math and science. This may be excellent. It may not. I know nothing about the computer class. I just have too many questions, so before I leave again, I have to meet with the school. I have to switch into school gear. This is not easy for me to do at the end of July.

Without my Blackberry I may not have gotten the email until way too late to schedule a meeting. So once again. I'm happy I have it. But there is that part of me that wondered if it would have been better to not be so connected. But then I thought again. I still love it. After all, it is pink.

Thinking Ahead

Things have mellowed out around here. The boys spent two days at the Grandparents swimming, literally until they dropped. We brought them home and they both slept until 11 the next day. Fantastic.

The weather has now changed drastically with an almost 30 degree temperature drop. It went from sizzling hot and humid to grey, cold, and wet. Not ever a good thing in any one's book. Especially Daniel.

We are on the last week of Zachary's baseball season, much to Daniel's JOY. He is so done with this. I don't blame him. But I end up missing the social time of talking to the parents and cheering on our kids on a summer evening.

I've had some contact with people through email and school is still running through my mind. This is unusual for me on the last day of June. We have a lot of changes coming this year which always makes me anxious. My mind turns to Daniel's academics. Usually this thought process doesn't start until the temperatures start dropping (but I guess they actually DID), maybe that is what is bringing me to fall. I was thinking of Daniel's IEP. The majority of Daniel's work is modified now which means he isn't doing the same work as his peers, except in math where we are barely holding on. We have some good things lined up for this year, but this will be a critical year in terms of academics. The principal at the new school, very abruptly, asked in our IEP "what track is this child on" with academics. That still is sitting very poorly with me. I hate hate hate, when they try to track our kids. They start it before they are even in kindergarten. I always push to have him as challenged as possible. All parents want to know what their children are capable of. I've had parents of neuro typical kids ask me if I think Daniel will get married, live away from home etc. Depending on my annoyance at the time, I have been known to say that they don't REALLY know if their child will have those things either. Lots of people don't get married or live in their parents house WAY too long. At least Daniel has an excuse! I know that where ever Daniel ends up I want one thing for him. I want him to be happy and I will never underestimate him.

I will keep trying to balance between pushing him to achieve without over stressing him. To get him to want more, without making him too uncomfortable or out of his box. Cale from Spectrum Siblings wrote a great post about his brother Carl today. Click here. Carl reminds me a lot of Daniel. However I suspect he might have been more successful in school than him. Nevertheless, he is an inspiration to me for what is possible for a classically autistic child. I think the Asperger kids have a hard time as kids, but once they are adults they can kind of find their own groove and make their way in the world. I hope the same for both of my kids.

What's the Reason?

Last night the middle school Daniel will attend next year had an "Activity Night" for 6th graders. I appreciate the opportunity for Daniel to spend any time with his peers while acclimating himself to what will be his new surroundings. I did not volunteer to "chaperon" even though I knew I'd be staying, just in case a quick exit was needed. Most parents just drop their kids off and peel away from the curb, thankful for an hour and a half of time knowing their tweens are in a school building being watched by other parents. I don't blame them. When it's Zachary's turn, I'll be doing the same thing. This time around though, I'll be "chaperon" in my own way. I discussed this in a post several months ago when Daniel attended a birthday party.

I had emailed the middle school social worker last Tuesday asking for a run down of what would be happening at "activity night" so that I could prep Daniel of what to expect. He had just had a fairly negative experience at his current school with a party that was supposed to be a reward for him and his fellow students who received a 3 or a 4 for citizenship on their report cards. I'll digress and explain that.

The kids who earned this reward had elected to have a party at school, watching a movie, having snacks, music etc. I had for this also, asked for information over and over only to keep getting told it was because of his excellent citizenship. I KNOW THAT! BUT WHAT WILL YOU BE DOING EXACTLY? HOW WILL YOU PREP HIM? I was very distracted that week as I was at a seminar for two full days and my 9 year old had decided that it was a perfect time to put on a magic show for our entire neighborhood, (yes really) needless to say, I was busy prepping for THAT. (and no I was not the assistant dressed in a sparkly onesie!) My husband went to pick Daniel up at "The citizenship party" at the appointed time only to find him in the hallway, red in the face and blotchy (his sure sign of being upset). I was not a happy mama. I emailed the teachers to ask what happened, "it was loud", "desks were moved out of the way, which upset him" etc etc. When my response was that if someone would have answered me and wrote out a quick social story to prep him for what was to be expected it may have alleviated the things that were upsetting him, and maybe we should keep that in mind for the end of the year craziness. I got a "good point". These teachers really know their business but in this case, they dropped the ball, probably for some of the reasons that I did. We all see the finish line of the year and just want to get through it.

I didn't want that ball to be dropped again so once I also refocused I sent out the questions to the middle school about activity night. Days went by with NO ANSWER. Finally at 3:30 on Friday (it started at 6:30) I got a phone call. I asked if there was swimming (nope) we went over several other things and I could at least tell Daniel about it.

We arrived closer to 7:00 and the first thing we saw as we paid to get in was the door open to the pool filled with kids. . . swimming. Strike one. Daniel says,"I don't have my bathing suit?" very longingly. If there is something you need to be prepared for it's swimming, right? Using Tanya's (from Teen autism) attitude I decided that it was probably better that I "forgot" to bring Daniel's suit, because he is wheezy and generally miserable from the pollen and springtime beauty and it now seems to have turned into an infection. We looked in the gym, thanks but no thanks, that's no place for a child on the spectrum. As we were walking the sounds of music were pulling us down the hall to the lunch room. There was a DJ and kids were dancing and having fun. This is where we spent the rest of our time. I know a lot of kids on the autism spectrum would have sat there with their hands over their ears, but not Daniel. That kid LOVES music and like a lot of tweens, the louder the better.

Daniel had a piece of pizza, I chatted with some of the moms who were on actual chaperon duty. One of these parents is a teacher in an AI room (autistic impaired) in a neighboring school district. Not surprisingly her daughter is a huge advocate for Daniel and always has been. When this parent saw Daniel out on the dance floor with his peers having FUN her excitement was undeniable. Between the two of us the ideas started flying for what the Elfs group (East Lansing friends of something?? I can't remember what the acronym stands for, these schools have so many darn acronyms!!) but it is a group of kids that are like a Links program (again!) they do activities with kids on the spectrum and Link them to their peers with social activities and in the classroom. We talked of the kids teaching dances like the Electric slide so that they can all do it together at activity nights. Wouldn't that be fun for everyone? I told her of my suggestion to the social worker last year that the kids talk about what's on their IPod in his friends group so he could bring a list home. Then we listened to the songs and put the ones Daniel wanted on his Ipod. It's about bringing them together so they have things in common. Bridging the gap. We both got so excited she wanted to start emailing people right then. It was awesome. During this conversation Daniel was dancing and having fun, which today he says was his favorite part of the night. And ya know what? None of it would have happened if he'd gotten in that pool to do what he always does and swam the whole time. Things do happen for a reason. It's about taking a situation, making the best out of it. If everything went perfect we'd never learn anything.

When we were leaving the school Daniel said, "I can't wait to go to MacDonald middle school next year". Now that's what it's all about.

Putting the puzzle together. . .

Last Friday Todd and I met at the middle school for a quick tour. I have to say I am so glad that I went. It didn't look nearly as scary to me as I thought. I, of course, knew it wasn't the same, but middle school conjures up images of darkness, crowds, yelling, and bullying. For some reason these are not very good memories.


We met the Psychologist in the main office and the assistant principal came out and introduced herself to us. It was so welcoming and the message of the day, was definitely "whatever he needs we'll do it". It was all about making us feel better. It didn't seem or feel condescending in anyway, but very authentic. She asked lots of questions about him as we walked around the 7Th grade wing of the school. There are still lots of questions about where he will fit in. They have co-teaching in regular ed classrooms, resource rooms, teacher consultants, REACH, which I keep hearing about and not remembering what the heck it is! It is still a puzzle to me, the outside pieces are all put together and I'm starting to fill in the middle. What will he do for his two electives? Band will be one, but what will we do with the other hour? He could do this, he could do that. Speech. How does it all fit together?


I can say that I know it will work out. We'll figure it out, we always do. It just takes me longer than some (like Todd) I was still asking questions at the end and Todd said, "she told you it was this this and this." But I can't keep it straight. He hears it once and remembers it. For me it doesn't work that way. Until all the pieces of the puzzle fall into place I keep moving them around here and there, checking to see if they fit. Right now there are still pieces of it missing for me, but I can see the other side and know eventually I'll slide that last piece of the puzzle into place and the satisfaction I'll feel will be wonderful. Hopefully I'll feel that way March 25.

Post meeting

We had an informative meeting last Thursday. I was SO glad that Todd came along, because there is no WAY I could have relayed the information to him. For some reason I have been avoiding writing this. I don't know why. Usually when I'm avoiding something I'm a bit afraid of it. Not that I'm afraid of writing, but afraid of what's coming. There are a lot of options available at the middle school and we are trying to figure out which will be the best for Daniel. Todd and I are getting a tour this Friday of the middle school so we can have some information stored away for our March 25 IEP. It sounds like it is going to be an overwhelming one for me because a lot of discussion will take place during the meeting about placements and we'll decide then. Although I will not sign anything at the IEP. I never do. It is hard for me to process information auditorily. I heavily rely on Todd to translate for me when I have no idea what's going on. It is something I've learned about myself, I do not process information very well or very quickly. It explains a lot about my childhood and college! But however you process things it is still my advice to everyone who goes to IEP's to not sign it then. You are allowed time to go home and process the information. TAKE IT. But after a certain amount of days it will go into effect without any action taken. Be aware of the laws.

The past several IEP's have pretty much been set when we walk in the door. So this will be a bit different. It is always an anxious time for me even when I know EXACTLY what is going to happen. So with the big changes next year and not knowing what's coming, I should be a big fat mess. In terms of support I have no idea what is going on and that really makes me nervous. I have heard wonderful things about the middle school, but Daniel has always had one para pro assigned to him exclusively. Even when others have had that change a bit we have been able to keep that in tact. He really has only had 3 parapros since 1st grade. One didn't even last all of 1st grade and that is a huge nightmare story! The next one was awesome and we had her through the end of 2nd grade. She got "bumped" (it is a union thing and someone with more time in took her spot) and we got Mindy, who we have had since 3rd grade. For the most part, we've been very very lucky.

From what I can gather next year, there are different people who sort of specialize in an area. So he might have one para during math and english, then depending on where he goes it will change. If this is the case, it should be interesting to say the least. They have co teaching in the classes meaning it is a general ed class and they may have a special ed teacher come in and co teach. It is the best of both worlds, extra help and staying with your peers. I hate not having total control of the situation. It leaves me feeling nervous and aggitated. Some of the decisions we have coming are tough. Do we send him into social studies even though the language completely escapes him? Do we double up on math because he seems to have the apptitude to learn this? The question of "where does he fit?" always seems to leave us at a loss. Because really he doesn't present like many other kids on the spectrum in our district. He is more classically autistic and most are more aspergers. But here he is, doing the math with everyone else. Obviously you never know if you are making the right decisions when you are making them. When he was in PPI and someone said, "are you thinking the basic classroom route or general ed?" We didn't hesitate with general ed. We didn't know what we were up against with back then. Probably being totally naive helped us make that leap. Sometimes that's better! I wonder where we would be had we said the basic classroom? Not necessarily worse off, or better off. Just different. It is one of those sliding door decisions that you don't know how things would have turned out differently. Maybe I don't want to know. I'd like to think we have made the "right" decisions along the way for Daniel. Maybe there are certain things, like his group speech on Mondays that we could have started earlier. Maybe they have worked because we waited until we did. I can and do drive myself crazy with these thoughts.

I can feel some of those decisions coming again later this month. I will continue to mull them over and make myself nuts with the different scenarios. When I brought up middle school to Daniel the other day the only thing he said is, "are my kids going to go with me?" Meaning all of the wonderful peers he has in his grade. I assured him that they are. That right there shows he has come a long way. He has gone from asking if his para is coming with him to if his peers will stay the same. I guess that means we've made SOME of the right decisions? Yes, I'm sure we have.