Home is Where the Heart Is

Maybe it's because it's the holiday season, or maybe it's because baby it's cold outside, but I've been giving a lot of thought to "home". Many people have inspired this. My aunt, after living 4 1/2 years in her paradise of Florida is returning "home" to Michigan. There are many factors to this, one being that love of her life passed away last January. I posted about this tragedy at the time. Paradise just doesn't seem so much like paradise anymore. After wanting to live there for so long, she is coming back. She has five grandchildren in the Detroit area and my two sons, who are really her grand nephews are sort of her adopted Grandsons. When I told my boys she was moving back to the Detroit area, they cheered aloud at the table. They weren't sad we wouldn't be visiting her in paradise, but thrilled to have her a quick drive away.

Many of us Michiganders walk around, especially about mid February, mumbling about why the hell we live here. It's freezing, it's slippery, it's dark at 5:00 pm. Your tired of being cold and miserable. But Michigan is sort of an ignored state. It is beautiful. The spring summer and fall could not be better. We are surrounded by the Great Lakes. Fresh water that looks like the ocean when standing on the beach. You can be at any place in Michigan and not be more than 86 miles from a Great Lake. They are magical but when you've lived here they can be taken for granted. We enjoy our lovely weather because we earn it darn it! I even hear that some people enjoy the winter?? I am not one of them, but if you snowmobile, ski or even go sledding, I'm sure these winter months have many joys that go along with them. I've never lived anywhere but here. I have lived in Grand Rapids (west side) Lansing (center) and Metro Detroit (east). They all have their pros and cons. But one thing that is a constant is we have family here. Not a lot of family, but we have it here and this is where our families roots are.

Until we moved into our current house my husband and I moved every three years. As soon as we would get the house close to what we liked we'd pack up and move again. I have owned three houses in East Lansing alone. I can't give any great reason for this, we just never felt like we were where we should be and I guess and we always found something we liked better. I wanted to move into this neighborhood before we bought the previous house but couldn't find one. One day on a whim, on the way to the pool, we went through this house. It had the extra bedroom we needed, a master bath and an awesome basement for all the kid stuff. We were sold. What I didn't know that I would get with this house is the most amazing support, friendship and love. This neighborhood has become my family in East Lansing. There is always someone to cover for you at the bus stop, to borrow something from while in the middle of a recipe, to go play with at the park, or take a walk and chat. We have parties, we socialize, we support each other. I have felt more at home here than anywhere ever.

When I allowed myself to let Daniel walk home from the bus stop (which they walk over a 45 mile an hour street on a pedestrian overpass and walk several blocks) with his peers I was so nervous. It's gone very well and I have people who aren't even in my circle say when they see me, "I see Daniel walking with the kids, he looks so happy." There are always people watching. That is nice to know.

Last week a neighbor had some people over to make gingerbread houses. She hasn't been here as long as we have. Three years now. She baked all the gingerbread herself and built the houses so we could decorate them. She had maybe 15 people doing this. It was amazing. The day after she posted on facebook that she felt it took 3 years to feel settled and comfortable somewhere and having her "new" friends over and watching us make our houses she felt "home" for the first time. I can't tell you how much that warmed my heart. The next day I watched Daniel staring at the house I decorated. He could stare at it forever. He loves the details. He was pretending to knock on the door and saying, "I can't go in there?" I told him he couldn't fit. He then said he could "pretend to be inside" (he wanted to 'pretend'? Wow.) It just looks like such a nice place to be, inside a gingerbread house....It's nice to look at that little house and the smell of the gingerbread fills the kitchen. Who knew that a little gingerbread house could represent the coziness, the friendship and the love of home itself. Happy Holidays. I hope you feel as at home as we do. I can't imagine being anywhere else.

Walking in a Winter Wonderland.....

This morning as I arrived back home after two trips to bus stops an hour apart, in blustery winds, snow that has blanketed our city, and school advisories running across our television screen, I grabbed my cup of coffee, made a bowl of oatmeal and thought about what had just transpired. Daniel, unlike most kids was bouncing off the walls with excitement this morning. Most were probably whining that our school district did not close and the promises of the HUGE storm never made it to us. Daniel, and actually Zachary too, were happy we got some snow and still got to go to school. If school closes, which only happens a few times a year, it is met by Daniel with anger, frustration and occasionally tears. After a bit of time he recovers and realizes he gets to stay home and play on the computer, listen to music and play the Wii and he somehow recovers. Zachary loves to put on his snow pants and go to his bus stop, which happens to be our neighborhood park, and fly down the snowy slide a million miles per hour into a bank of snow. Many of the kids race to the park because the one who gets there first gets the first run on the snowy slide which is the fastest slide of the morning. The only reason Daniel likes snow is because he likes to eat it. Yeah yeah, "all kids eat snow". But not like this kid. He consumes it, constantly. I gave up on that battle years ago. I try to keep him away from areas that have been salted and the "yellow" snow but otherwise I pretend it isn't happening. People constantly say, "look Daniel's eating snow!" and if they aren't really close to me I'll give him instruction to put it down, all for show. Or they'll say, "you should tell him to stop that" as if I hadn't already done that 2 million times. If I'm feeling snarky I might say, "YOU try to get him to stop, I dare you!"

(I just saw a weather update and the windchill is -4) Ahh Michigan.

The most glaring thing this morning came while I was sitting at the kitchen table and he was headed upstairs to get dressed. He usually wears Skecher's similar to this...which, I think, are actually quite stylish and you notice have no ties. An excellent choice for those on the autism spectrum. But I didn't think they'd be great for tromping through the snow. Todd had suggested a few days ago that I get Daniel some boots to wear to and from school. I was realizing as he said that, no middle schooler in their right mind would be wearing boots to school and carrying shoes with them to wear inside. Would they? Am I wrong here? I reminded him that Daniel wears size 11 men's shoes and that isn't super easy to just toss in your backpack. It would be heavy and unwieldy to carry (not good for Daniel while walking home). Todd didn't seem pleased with my assessment, but then suggested the shoes I had bought him (at DSW in the clearance section but were still $45 dollars) for his concert when he needed black shoes.

These are very similar to the shoes. They are much more substantial, heavier, with a thicker sole than the brown ones. I thought it was a good idea so this morning as I was sitting at the kitchen table and I casually mentioned that with the snow, I thought that his black shoes might be more appropriate. He looked at me smiled and said, "oh, ok, good idea" and bounded up the stairs while asking me if they were in his closet. I sat there stunned. It has been a very very long slow progression, but we have apparently gotten there. I have memories of it taking weeks and weeks to transition him into winter coats, pants, and out of crocs. There would be tears, yelling, screaming and when he was little hitting. Switching into the winter coat sent his body into sensory overload. Maybe I was wrong to force it, I know some who do not, but I could not send him into -4 degree weather not properly protected. Once the transition was done he was always fine with it. It was just that transition, it took a lot of work and energy. Apparently I am almost as obstinate as he is. In my opinion the fight was worth it. He no longer struggles with the clothes transitions.

He happily brought down his black heavier shoes, to get ready for the walks today. He had a silly little smile on his face and I could see how excited he was. I didn't ask, but I knew what he was excited for, eating the snow while walking, the whole way.

Growth

As I think everyone who comes to this blog knows, loudness and autism do not go together very well. We are always trying to get Daniel to try new things because I think it is very empowering to him. As he has grown it seems he is more scared of the "idea" of loudness than the loudness itself. This didn't used to be the case, but he is 13 now. He has matured a LOT. I am so proud of him. But trying to get him to do something that he is scared to do, simply takes years. There have been times that we dragged him kicking and screaming into a situation, knowing he'd be fine when he got there (and he always was) but when it comes to most things, we go about it slow and steady. It may take years, but once he does something, he is usually there and will do it again and again.

As you may have guessed by now, we did something today that we have been trying to do again for, I'm guessing, 8 years. Last time we went we didn't get past the concourse of the stadium. He wouldn't even go to the area by the seats. Today we managed to go to an entire, women's college basketball game.

We live in East Lansing, home of Michigan State University. Basketball is BIG here. We have a Big Ten university within walking distance from our house. Along with that comes certain advantages, such has having great sports, arts, concerts and a beautiful campus all at your fingertips. There can be downsides. I don't think there is a resident who doesn't breathe a bit of a sigh of relief every summer when the area empties and all of us 40 somethings and families can reclaim downtown for ourselves for a few short months.


Todd and I have always been huge college basketball fans. It's something we love. Zachary, our 9 year old, is following suit. We are properly brainwashing him. We are both MSU graduates ourselves and except for one rogue member of our families, we all went to MSU. That person went to that other Big Ten university in our state. . . Zachary has no idea how great he has it. He has been to countless men's basketball games and has never sat any higher than about row 11. We have connections, good ones. The tickets usually come and either Todd and I go if I can scramble up a babysitter, or more than likely lately, Todd just brings Zachary and I stay home with Daniel. It's easier that way. I have to say, I'm getting a bit jealous of Zach taking over my tickets, but he loves it too. We ask Daniel if he'll go, we give him reasons why, the things he'll enjoy, like Sparty, the pep band, popcorn (always our bribe). But no. He remembers. He remembers forever.


We tried it once when he was maybe 5. I think it was a woman's game, which are MUCH quieter than the men's but by no means quiet. We walked in the doors of the Breslin Student events center with Daniel 5 and that would make Zach 2. We pretty much turned around and walked out. Daniel's hands were over his ears and he was screaming and crying. That wall of noise hit him and there was NO WAY he was going in. That was the last time he went for a Big Ten Basketball game. He has been in there for a circus. Which I find to be the biggest sensory overload ever, but he was fine for that. If it's something he loves he seems to find a way to power through it. So the key is finding something he'll love about it....it can be tricky but I can find a way. Along with 8 years of patience, a plan, and popcorn (my 3 p plan!)


We had been discussing it again. We had finally got Daniel to say that MAYBE he'd go. This is the opening. Once he allows the possibility, you have an opening. We both thought he was ready. We already decided to try a women's game. If we had to leave it wasn't a big deal, we'd just leave! Todd and I were planning it. Then Thursday I walked into Daniel's swimming and the sign that it was time to proceed came, my friend Amy said, "I have 4 tickets to the women's game on Sunday can you go?" and the deal was done. It was time to launch the plan.


Thursday at dinner I casually said to Daniel that Dad had told me he might be ready to try a game. "yea, maybe". I left it at that.


Saturday, we said that we had tickets and could go. He wasn't so sure. "It's too loud, I can't do it". Yes you can Daniel, it will be fun!!! "It's too loud" So we gave him the list of "things I can do if it's too loud". 1. cover my ears 2. go out to the concourse 3. go to the men's room and take a break (just like at school) 4. go get a drink 5. Last but not least LEAVE . He has to have an option to leave and you have to agree to it if it's requested. Otherwise he'll never try it again and he won't trust you again, and the next thing will be twice as difficult.

So off we went to the game yesterday. Here is a little montage of our afternoon.

Make video montages at www.OneTrueMedia.com

He did PERFECTLY. You want to know the kicker? At one point the BELLE TIRE GUY came on the big screen! I didn't even see it! Todd told me after we got home. Daniel just hid behind his popcorn box and Todd was reassuring him that it wouldn't come back? AND I DIDN'T EVEN KNOW ABOUT IT! That is incredible progress! What a great outing. Thanks for the tickets Amy! He's growing up! Isn't it amazing?

Christmas Decorating

Every year after Thanksgiving people start decorating their houses for Christmas, well, unless that is a holiday your family doesn't observe or you are insane and start after Halloween. Facebook has allowed me to peek into the lives of others who's status say things like "I'm so excited to start decorating for Christmas" or "only 5 more trees to put up now" or from a relative by marriage of mine, who I adore, "I'm taking a break from decorating to paint my laundry room". Yes, you heard me right.

This has made me feel even more guilt than usual, because, while I LOVE how my home looks when it is completely decorated for the holidays I really really hate doing it. Really hate doing it. One of my Facebook status's read on the Sunday after Thanksgiving something like, "I am in the place of knowing I have to start decorating but really don't want to start, because if I start then I have to finish and I don't want to start". There were a few kind soles who felt my pain. But mostly everyone is jolly and (at least making us think) they are merrily singing Christmas songs while hanging the mistletoe.

I am not a total Scrooge. I put on the best face that I can for my children. I don't want them to see me muttering about the damn lights on my "prelit" tree that is 4 years old and only 1/32 of the them still light. It is maddening to me. I am choking down my complaining and smiling and turning on the Christmas music on the tv music channel. Most of this is all self inflicted, I know that. Which is why I am dealing with it myself. Todd even said he doesn't want to hear me complain. Which he hasn't. So I'm complaining to all of YOU. Of course he hasn't helped with anything, except carrying boxes for me. I don't blame him on this either, because you see as I was starting to explain, I'm nuts and I self inflict holiday pain. It starts because of my perfectionism. I don't WANT to be that way, but I am and Todd knows that whatever he does, I'll probably just redo because it's not "right". So he (smartly) stays out of my way. Of course I then start to resent him for not helping, but I know deep down if he was helping I'd probably tell him to stop. It's a lose/lose for him.

If there is a dark spot in the tree, I'll redo all the lights that just took me an hour to do. If the kids hang all the ornaments in one spot, I can't stand it and try, try, try, as nicely as I can to explain how they need to be spread out and evenly placed. Because if they aren't I CAN NOT FUNCTION. This is partially what led me to getting the second tree I referenced. The prelit tree that is no longer prelit. This is the "kids" tree. MY tree is the "big" tree in the formal living room. It is entirely decorated with only gold, and clear glass and white. It has approximately 8 million clear lights on it with a lighted star (Daniel for some reason insists on only a star at the top of a tree, no angels). And it's amazing. The kids kept wanting to put their adorable ornaments on it, which I could not do because it doesn't "go" together. (As I mentioned I'm nuts). So I got a second tree for all of their stuff. It is appropriately in the family room and covered in Peanuts ornaments, homemade things, trains, superheros etc. It's adorable, because these things go together. Keep them far away from my masterpiece in the living room!

Daniel comes into play here because I know that once I start with the decorations he wants them finished RIGHT AWAY. Hmmmmm, I don't know where he gets this from?? ahem... Anyway, he pesters me, constantly. As soon as I proudly finish one thing he says, "that looks great! When are you doing to start _____ ?"(fill in the blank) It's never ending.

Yesterday I started putting up my Department 56 houses. The kids love these houses. I USED to love them, but am really loving them no more. I now have 27 of them plus many of the small characters and set ups that go around them, like "The Town Tinker" and "Puppet Theater" That doesn't sound like a whole lot, but if you have ever put them up you know what a pain it is.

If you throw in my insanity and it is just ridiculous. I don't want to be this way, but when it's wrong, it honestly hurts me and I can't stand it. I clear off all of the books from my shelves along with the clay projects from school. This takes about 4,000 trips up and down my basement stairs to accomplish. Then I have to dust those shelves (eek). Then I start bringing up all of the boxes for these houses. It makes a mess. Which makes me crazy. ESPECIALLY when you start opening them and little pieces of Styrofoam are EVERYWHERE. I was arranging and rearranging yesterday because I have North Pole houses and the Dickens Village and they can't be intermingled and you can't have Dickens, Dickens, North Pole, Dickens. That just wouldn't be right. Then I have to get them to fit, then I have to clean it all up and put it all away. I finished cleaning up after hours and hours yesterday, sat down on the couch. Ok I laid down. Daniel came in from school, and still in his coat looked at me and said, "are you just laying on the couch?" I said, "look what I did Daniel"

Daniel GASPS and says, "oh mom it looks beautiful! That is a lot of hard work"

Me- Yes it is Daniel, it took me a long time to do.

Daniel-"the family room looks GREAT!"

He is so happy. It makes me happy that he is so happy, and you know what I realized last night? He didn't ask me about the living room. He accepted what I did happily and didn't start riding me about the other tree! What progress! I guess I need to take some lessons from Daniel, don't I!?

All I Want for Christmas....

'Tis the season! At our house, as Thanksgiving approaches, it seems to be the signal for the children to sit down at our kitchen table, pull out a piece of paper and a pencil and start making their Christmas list. Zachary worked very diligently on his, the "big" item being a video camera. My artsy creative 9 year old would like his own camera to film and edit his own movies. That is his #1 choice of gift. He spent a considerable amount of time last summer making a movie with his friend Ethan. They had a BLAST and spent days working on it. I thought, what a great way for them to be creative and be independent. The more I think of it, I have this underlying fear that I will be the "victim" of his "movie making" which in the hands of a 9 year old could easily morph into spying. So IF he gets this video camera from Santa, there may have to be some rules to go along with it!

Daniel wandered upstairs and saw Zachary's completed list. Zachary offered to help Daniel (by doing the writing for him or in IEP words be his "scribe") which was greeted with great enthusiasm.

Zachary- "ok Daniel what do you want for Christmas?"


Daniel- "A Vtech Little Smart Alphabet Picture Desk"


Zachary- "What?"


Daniel- "A Vtech Little Smart Alphabet Picture Desk"


The list then continued, Toy Story Mania Wii game, The Peanuts Holiday DVD collection.....you get the idea. But number one is the "V tech Little Smart Alphabet Picture Desk". Then he says, "I really want that, I already know my alphabet (yeah, since his was 1 1/2 years old) but I want that". You see, he has a thing about the alphabet. He loves the order of all of the letters, how they always are said in order, he LOVES letters. He knows this is for little kids, but oh how he wants it. And whenever anyone asks "Daniel, what do you want for Christmas?" he says "A Vtech Little Smart Alphabet Picture Desk, I really want that", in a way that is reminiscent of Ralphie from a Christmas Story saying, I want an official Red Ryder, carbine action, two-hundred shot range model air rifle!

There is an excitement and a joy as he rattles it off, just like Ralphie does. It makes your heart go out to him. He has his mind SET. Although no one can respond, "you'll shoot your eye out kid" as everyone did to poor Ralphie. Most people just say ooooooohhhhhhhhhhh and nod politely.

How did he find this toy you ask? I do not know for sure. As much as I can figure he was googling the alphabet and stumbled across it on the internet. I have asked him many varieties of questions, such as, "did you see this toy at someone's house?" "Have you played with it before?" To which I get the answer, "I want that, I really want it". I guess it doesn't really matter HOW he found it. He did find it, and he really wants it. This much is clear. And here it is...in all it's glory!
The only place I have found it, however, is in online auctions. So here I am again. Having flashbacks to when he wanted a "Little Pinocchio carved out of wood with strings and joints" and me searching on the web endlessly trying to find this "toy" that is not a toy, until I finally found one on ebay, beat them down in an auction and took it home. I was willing to pay an astronomical amount of money for that damn Pinocchio, I mean, it is practically a one of a kind, literally carved out of wood, but I believe I got it for like $35.00. Or how about last year when he wanted MAN SIZED BUNNY SLIPPERS, and I FOUND them? It seems that every year there is one interesting item on his list that he has stuck in his head and it becomes my mission to find it.

I bid on 4 different auctions for the "V tech little Smart Alphabet picture desk" and lost them all. Granted, I wasn't willing to pay a very high price for it, so I kept getting beat out in the last second. Unlike Pinocchio there seem to be millions of them on Ebay. Why? I do not know. Is there some reason everyone is rushing to put the Vtech Little Smart Alphabet Picture desk onto online auctions? Is it so annoying that they want it out of their house at any cost? Do people not just give crap like that to Goodwill? Why go through the bother of selling something for $4.99? Which by the way is what I purchased this coveted gift for, $4.99 plus $6.95 shipping and handling. I have a feeling that the $50 Wii games, train tracks, $59.99 robot that will also be under the tree, will be second fiddle to the $4.99 used, "Vtech little smart alphabet picture desk". But I'll have made him very happy because I have again found the random item that he asked for and Daniel RARELY asks for anything. Let's face it, at least he won't shoot his eye out, and maybe, Zachary can film him playing with it!

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.

No Reason

We only have a few weeks left until our 12 weeks with a para sub are finished. Daniel's para is on a 12 week family medical leave. She had a beautiful baby boy this summer and starting with the first day of school started 12 weeks off to be at home. While I was very happy for her, this left me with a lot of anxiety as this meant for us, the first 12 weeks of middle school were with a sub. We had tried to arrange a sub of "choice" and because of many different reasons, that didn't work out. Except for some minor bumps in the beginning and the horrible two days during the full moon, things have gone remarkably well. The sub who has stayed with him came in on day two and after a week of subbing agreed to stay on until Mindy (his long time para) comes back on November 30. Let me say, this sub has been AWESOME. We have been so so lucky to have her for these weeks. I can't imagine the difficulty if we'd had to bounce around from person to person this whole time. But it has obviously been an adjustment. She doesn't know Daniel, although she's learned pretty quickly and has a wonderful calm nature about her that he needs.

During the "full moon incident" I could feel myself wanting that date to come. As great as his new school has been and as well as they have gotten to know him, they still don't KNOW him like Mindy does. I've felt that these last two weeks. Again, this week a few things "happened". I have been working closely with his teachers. They have talked to me a lot trying to sort out the "Danielisms" that appear that they don't know what to do with. I can shed some light for them, but without being there and just hearing their explanation of things, it can be hard to figure out.

This past Thursday apparently right after I got in the shower to get ready for work, my cell phone rang. I didn't hear it obviously and since it was charging in my family room the next 30 minutes that I was getting ready I had no idea they had called. Of course they never called my home phone either, but I had told them cell first. I, silly me, figured that they would then try my home number, but I guess not. I was walking out the door to head to the office and my gut kicked in. I thought, "I had better check my email". Which I did. Only to find these two emails:

1. I need your to call me right away 3*3-$%^$ then 20 minutes later....

2. Re: Okay, I think we are okay...hopefully. I will call you if anything else happens. Ms. _____ did not do anything and Daniel went after her and got in her face.

First I know from first hand knowledge that it is scary when Daniel comes at you. He is big. After a trip to the Dr. this week I know he is 170 pounds big and about 5'6" tall. He is careful not to touch you because that is his line. But it takes a strong person to stand there face to face with him. I know because I'm usually one of the people he'll do it too. The funny thing is, he'll only do that to the people he trusts. It's almost like he is calling out to you for help. But I digress, I need some feedback here to know what your reaction would be, because my reaction to the email's was NOT GOOD. First I called the number in email number 1 and no one picked up. Probably because things were under control and they were back to class. So I left a message saying I was in the shower and missed the call and that I would email her.

So I emailed and "lost it" in my email. I was pissed. More than pissed. I told a friend of mine that I was yelling at a teacher in an email and she said "you mean with all CAPS?" . . . not that much yelling, but I answered and copied my husband, the social worker and the AI teacher consultant. I tried to explain my rage as I will try to explain it to you, my readers. First I'll say as I mentioned earlier they aren't asking me to come and get him or anything like that, they are letting me know of the situation and asking for my input on what triggered him, usually. I am fine with that. If anyone can help them find the triggers they will all be happier, including Daniel, my main concern. BUT that phrase "______didn't do anything and Daniel went after her and got in her face, set off my triggers. I know part of it goes back the fiasco 1st grade year where I heard daily and in meetings that "everything is fine and he can't handle it and goes off for no reason". I had a flashback, similar to the veteran who hears the car backfiring that makes a dive for cover. I went into defensive mode.

I explained as clearly as possible, that Daniel does not go off "for no reason". It may not be a reason that they see, but something set him off and it is up to THEM to figure it out. I will help but do not tell me it was for no reason. I went on and on and on. . . and on. I said my best guess, having no explanation expect he "went off", was among other things, that possibly some of the kids around him were acting up and no doing what they are supposed to and/or some of the work was too frustrating etc. His speech skills are still very limited, especially when he's upset. So he can snap in frustration. Which is what happened. I later learned that:

1. in 1st hour in computers his keyboard stopped working (who has not freaked out from their computer breaking down? and this sends him into orbit) It sounds like he actually handled it quite well. He "went to the boys room" which is one of his things he is supposed to do when he is stressed. It gives him a walk and an away safe place. He can sing in there, which helps calm him down. They switched his keyboard and he was back on target but still running a little higher than normal. On to second hour. . .

2. They were doing a very difficult assignment (sound familiar?) he was very frustrated with.

3. They had a lock down drill. He usually does well with these, but with the other two things having just happened he was on edge and apparently some of the kids were talking and laughing (which is against the rules). Making him lose it. (again, sound familiar? am I good or what?)

I didn't hear anything after my email went out except from my husband who said he was 100% behind me and he thought I explained my anger quite well. After talking to him I began to relax myself and headed off to work.

I got a rather surprised apology, still not really understanding MY losing it, but explaining she did not mean to offend me in any way. (and probably telling her co-workers that Mrs. Sneathen went off on her 'for no reason') :) I actually still couldn't bring myself to answer her so I didn't. I then got an email at 4:00 and again and 6:30 (in case I hadn't received it). I wasn't answering and I think I was driving her crazy, but I didn't want to answer until I felt better about the situation.

I finally responded the next day. I basically said I knew that nothing was meant by it, but that "for no reason" thing will set me off every time, again explaining why. The lesson for all of is pretty obvious....autistic or not, we all have triggers and they are different for everyone. The difference is that even in my anger I can sit down and write a comprehensive answer as to what made me angry. Daniel cannot. He doesn't even always know why he's upset, he just knows he is. Often when you ask him what made him angry he'll describe what he did in reaction to the anger, like, "I got in her face" still not understanding what made him angry to get in her face. We work on this every single day. For YEARS now we journal every night. Every night we write down 1. what made him happy, 2. how he helped out during the day and 3. what made him angry. I would say 8 out of 10 times he tells us his reaction to his anger and then we help him work through to the CAUSE of the anger. Sometimes he even tries the "I wasn't angry" which is true part of the time, the other times he was and is trying to avoid it. We then have the opportunity to talk about what he could have done differently, if anything. This isn't my idea, we do it for his private speech teacher. He's come a long way. In the beginning he would RELIVE the incident like it was happening anew, every single time. Yelling and crying. He doesn't do that anymore and sometimes he can tell us the why. We are making progress, but we aren't there yet.

Post Halloween Madness

After an insane week of days off, Halloween festivities around every corner and lots and lots of chocolate, Monday began a new week. A new and very very noisy week. Actually this noisiness began on Sunday. Daniel was so incredibly LOUD. His 'normal' perseverating and chatting and singing but times 10 in volume. . . at least. I have a tendency to get sensory overloaded. Most adults wouldn't be able to name that for what it is, but having Daniel in my life has helped me understand some of my own "quirks". Too much noise and sound and my insides start to tighten, I'm clenching my jaw, my shoulders are rising up, until that sensory glass runneth over and I'm DONE. Sunday I was DONE on many occasions. I told him on at least twice that one of us had to leave the room because mom could not take the noise, noise, noise! (is that the Grinch or Cat in the Hat?) Anyway, he was very upset with me and my lack of being able to tolerate his loudness. Nice that he wanted to be at my side, not nice that he couldn't lower his voice to anywhere near a normal decibel level.

Fast forward to Monday. The loudness continued. He, apparently, came into school "singing" at the TOP OF HIS LUNGS and from there it got nothing but louder. Soon he was in tears because people kept trying to get him to take breaks, take a walk, get a drink, all the things they are SUPPOSED to do when he can't pull himself together. This just pissed him off further. They called me, not to complain, but for advise. All I could do is say, "I know, I know, I saw it yesterday". Group was pretty good Monday night. She has a new strategy for when Daniel gets upset because kids are "acting silly" or "not following the rules" and he tries to control the room....she simply wrote on a piece of paper something like, "when kids are being silly or not following the rules, Daniel will stay quiet and let the teacher tell them what they should be doing" or something like that. As soon as Daniel would start to point something out, she'd point at the paper, would not say anything, just point, and HE STOPPED. Every time. I have, of course passed this on to school.

Then Tuesday morning I was at Zachary's bus stop. My cell rang. It was the school. This is bad news as school hadn't even started at that point. Sigh. I answered (tentatively and really wanting to ignore the damn thing) only to immediately here in the background Daniel screaming at the top of his lungs. These poor people were beside themselves. I told her to ask Daniel to get on the phone with me...the response was NNNNNNNNNOOOOOOOOOOOOOOOOOO!!!! O.K......

They had gone through the first, what? 8 weeks of school, and not seen this ever. All of a sudden he flipped. I listed strategies, reminded them of everything and nothing was working. I found myself counting the days until his para was back from her Family Medical Leave. November 30. That is a LONG time away. At least from this chair. Probably not so much for her. But really it's all about me...isn't it? No? Well, it should be ;) Anyway, after school the note said he was "aggressively leaning into his para pro (who has been wonderful by the way), not touching her, but in a threatening manner". I, unfortunately, know EXACTLY what they are saying. This is what he does when he's really mad at you. He may not be able to verbalize it, or the why, but you can't get much more of a non verbal communication than that can you? I wrote the teacher an email back explaining this saying, I don't know what he's mad at, but he is clearly, telling her to back off. If she is following on breaks etc, she must stop. He needs space and is clearly communicating that. I followed with, I hope you don't turn around and talk about the nutty woman in EL, but. . . . it's been a full moon, can we give him space and see if this passes on its own? Yes, I was suggesting that the moon was contributing to the insane and noisy behavior of my son.

Her response was, omg I didn't realize it's a full moon, ok lets see...That night, I kid you not, Daniel was getting into bed. He turned to me, smiled his beautiful and slightly sneaky smile and said, "I love a full moon". Seriously. I should have said, what do you like Daniel, the fact that you let everything out and are basically HOWLING AT THE MOON for two days? But I just smiled and said, "I know." It was almost like, "that was the end of it, I've been acting crazy but now its over." And you know what? The next day it was done. Over. Gone. Back to normal. As if nothing happened. I received an email from school saying,"well, it's the same Daniel today as the rest of the year." I knew it was going to be over after he said that. I don't have a good ending to this except, I've seen in the past the moon having an affect on him. But this was nuts and he pretty much told me it was the end as if he could feel the pull was gone. It's really an amazing phenomenon. I'd like to hear how you or your kids have reacted in the past to the full moons. It's fascinating. And I'm glad it's over....for this month.

Full Disclosure

As you know, Daniel is in middle school. In our district there is one middle school that all schools meld into. He has done an amazing job. He is trying really hard and working really hard. I've given him some new independence. He still has a parapro with him except for band. Band is a time when he has had some independence previously. I really wanted him to have a para with him during lunch since a middle school lunch room is such controlled chaos. I still think this was a good move especially since Daniel has really started noticing when his peers are "acting silly" or "not following the rules" and it makes him M*A*D* MAD. The good news is he is noticing those around him more, the bad news, he wants to control them. We are working on it.

This weekend I took Daniel for his usual swim on Sunday. I actually got my butt in the pool this week to swim with him. My hope was to make him actually swim more, (he likes to "race" me) and also to get myself a bit of exercise. For a girl who has never (don't hate me) really gained weight (I gained 29 pounds in both of my pregnancies) I have added a solid 12 to mostly my midsection. It's depressing, especially since the only thing that has changed has been my age. While we were in the pool a boy Daniel's age who we frequently see there arrived. I took the opportunity since I was right there to initiate some interactions. Daniel was showing him all of his different fish impressions in the water. These include, swimming like a jelly fish, dolphin, whale etc etc. They are eerily accurate. The boy started playing along and also trying out the strokes and following Daniel. He also added in more typical 12 year old boy things like "swim like a dead body" which Daniel imitated right back. I was thrilled. I suggested they go off the slides and they did. This went on for a good 45 minutes. During this time I started talking to said boy's father. His son swam over and clearly had something to say to me.

He then told me that during band (which he has with Daniel) when "Daniel says what some kids think to be random things there is some laughing and picking on him". I loved his assessment that others may perceive his perseverating to be random but in fact it is not! Anyway, I asked if these kids happen to be kids who had never been in a school with Daniel before. He confirmed my thoughts. I surprised myself by not being upset by this fact. I realized right away that when people don't know or understand Daniel's disability they think it's nuts the way he talks out loud all the time. He did also mention that the two trombone players (one of which Daniel considers his best friend) stood up for Daniel when this would happen. This pleased me greatly and I thanked him for telling me and immediately started writing the soon to follow email in my head.

My solution to this is not to change anything about Daniel, or to get more support but to educate the children. I emailed the social worker, special ed teacher and of course the band teacher and told them what I had heard and encouraged a "talk" with the band class about Daniel. The band teacher said that she had seen this and had talked to the offending children about it and has not seen anything since. The social worker agreed that a little educational talk may be in order.

I know that some parents on the spectrum do not agree with how I handle his disability. I hear undercurrents of "not respecting his privacy" that it is "personal" etc. Some choose the opposite of me and do not tell their kid's peers of the disability. Maybe part of it is Daniel's disability is out there anyway, you can't miss it! But really I think that most kids, even those that are higher functioning, the kids know there is a difference and I have found that if you address the difference and explain it (especially at a young age) the kids just kind of say, oh, hmm. It has been our experience that the kids who went to his lower elementary are all extremely supportive. We were lucky enough to have a fabulous social worker there and every single year I encouraged her to talk to his class about him (when he wasn't there). This has grown into a huge following of kids who are very protective of him. It has also, on more than one occasion (like last time he switched schools) helped kids to feel comfortable enough to approach me or their parents and tell them of some injustice happening. It is my feeling if we tried to hide it and not talk about it, they wouldn't feel comfortable letting us know of something going on.

I don't want you to think he gets harassed all the time. I can count on one hand in 7 years the instances this has come up. I tell people all the time if he can't answer their question, or he is barges past them almost pushing them out of the way, if it works I'll tell them of his autism. It isn't an excuse, but a learning opportunity for others. They can learn one of the many ways autism can look, they can learn how to not be so judgemental (because you haven't walked in anyone else's shoes) and they can learn to be kind. I feel with my 24/7 full disclosure that I'm helping others to do that. I am thankful for the information I received at the pool on Sunday, not that kids were sniggering at him, but because we have the opportunity to help them understand and accept someone else's differences.

Happy Halloween

We have another Halloween under our belts at the Sneathen house. The kids enjoyed themselves immensely. Daniel is loving Halloween more than ever before, the fact that he's 13 and looks 19 is a bit of a negative, but so far we've had no complaints from people handing out candy! We actually had a 20 year old bringing his little sister around and he had a bag for himself, so I'm chalking this one up to one of my autism theories which is, Daniel is doing what everyone WANTS to do but does not because of outside pressures and peer pressure. He doesn't care that it's not "cool" for a 13 year old to dress up in an all out clown costume, paint his face and trick or treat with the little kids. He doesn't care that it's not cool to sing Veggie Tales "God is bigger than the boogie man" at the top of his lungs. It's a very catchy song! He goes with what he truly loves without letting anyone else tell him differently. There is something lovely and endearing about that. If fact, I have some jealousy about it!

We were ready for trick or treating but Daniel was insisting that he wanted his face painted. He has never allowed his face to be painted. It was just a few years ago that he finally put a temporary tattoo on him. In the past, if he got a stamp on his hand he would hold it out in front of him crying as if the ink was burning a hole in his hand. I still don't know if it actually hurt a bit or he didn't like the look of his skin this way. This will go under the category of "things I may actually find out in the future". When Daniel told me he was going to have his face painted this year I believed him 100%. When Daniel says he is going to do something, he does it. There is no going back. That is a GREAT thing with him. I know once he says he'll do it, he will, and he'll never go back to not doing it.

Let's give an example. . . . the dentist. He wouldn't let someone even look in his mouth for years. I'd bring him to the dentist, he'd watch them clean my teeth, clean Zachary's teeth, he'd sit in the chair, but clamp his mouth shut. Many people I know with kids on the spectrum would put their kids under for the dentist, but it wasn't a route I wanted to go. I knew once I got him there we'd be good and then he'd have the rest of his life, not being put under. Then one day, he had a new hygienist, in a new building and he did an entire teeth cleaning. . . . he's been doing it ever since.

I could tell he was nervous about the face paint, but he sat very patiently in the kitchen chair while I applied white makeup over his entire face. Zachary stood behind me saying EXACTLY the right things (I love that kid). He encouraged him, told him how great it looked. Daniel had a vision which he thankfully can share with me. He told me "I want an all while face, a big red clown smile and blue triangles on my eyes". I believe that some of the crying and screaming as a younger child were because he knew what HE wanted but WE did not, since he couldn't communicate it. He assumed we knew and would freak out when it didn't look that way. He has learned to communicate his needs much more effectively (most of the time).

So here he is looking at the final result: I love this picture. There is something about the way that he is looking at himself in the mirror that touches my heart. Not a whole lot of people can appreciate how much a little thing like painting a face can mean to someone. Daniel certainly helps you appreciate the little things in life because he enjoys them so much. The next one is Daniel feeling very proud of himself and ready to go to our annual neighborhood parade.

His brother Zachary takes a totally different approach to Halloween and wants to scare everyone. He also needed to by face painted. His mask was a half mask and the picture on the box showed it painted on the bottom half and on the neck. As I was painting him I reminded him that my skills may not be the same as the professional make up artist who most likely painted the kid on the front of his box. You see, Zachary is a perfectionist of the highest order and he's creative and can draw and paint well beyond his 9 years. He said he understood and he was sure I'd do a good job (I've trained him so well haven't I?) So here is a picture of Zachary's finished product. I hope it shows up ok because when I try to enlarge pictures on here they get blurry. Does anyone else have this problem?

Zachary covered our entire neighborhood which is over 100 houses, then went into the neighboring hood. Daniel was home within an hour but still got a pretty good haul. He is perfectly content being able to say ok I did it and I'm done and Zachary feels the need to go 110% for the allotted 2 hours of trick or treating in EL. I don't know if it's that way elsewhere but you have from 6 to 8 and then you are done. No stragglers. The siren goes of at 8 and you are done. As a parent I can't tell you how much I appreciate that!

I'm so happy this week is over. It has been the busiest week I remember in a long time. Besides the 2 1/2 days off of school, the Halloween parties at school and in the neighborhood, conferences, getting Daniel's reevaluation and new IEP done based on the reeval, I started my new job. I spent my first week as an advocate and my 8.5 hours that I'm supposed to work ended up being 12 I think....(See Zachary's description above as a perfectionist. ) This is going to be the most difficult thing for me. I need to be able to accept that I can't get right back to people because I'm not working 40 hours a week. But it should be easier next week while they are in a full school week and with no holidays and parties looming over me.

Todd and I did cut loose a bit ourselves, the week before we went to a party. Also speaking of perfectionist and competitive, I made out costumes for our party. I think they turned out pretty well! So here we are, the happy couple:

Pumpkin Walk

Halloween week is upon us. I say week because like many other holidays Halloween is spreading it's wings and lasting days and days. Yesterday Zachary's school had his school Halloween party, then later that evening was East Lansing annual "Pumpkin Walk".

The downtown business district in East Lansing graciously open their doors to the children. They dress up and hand out candy (and sometimes coupons along with the candy). The sidewalks are jammed with children and adults getting the jump on Halloween. You can't walk a few stores without seeing someone you know, chatting with the parents and complementing the kids costumes. It's fun. You see kids you know who aren't in your neighborhood. A local B and B does it up big and turns the whole thing into OZ complete with the yellow brick road and all the characters.

It is always on a Thursday, at least as long as we have been attending. Which makes it after Daniels regular Thursday swim. Our friends who we talk to all the time are also heading out to the same event after us, so Zachary and his friend Emma both have their costumes in tow. Therefore, photo ops are always in store. We decided that by the time they graduate from high school we'll have a wall of photos of them together in their costumes. (I'm kidding myself that this will continue forever you understand!) Here are Emma and Zach posing together. Emma was Michael Jackson and Zachary was an undead rocker...or "dead Slash" as I heard some people say.....

As you can see, Zachary fully embraces Halloween. He goes for costumes that are the complete opposite of him. He really really gets into it....

After swimming we went to the Pumpkin walk. Daniel dressed into his costume. He LOVES his costume this year. After years of Daniel refusing to put on costumes, refusing to ring door bells and say "trick or treat", the past few years he has progressively gotten into it. Here we are at age 13 and he is finally in full on Halloween mode. The fact that he was taller and bigger than 95% of the people handing out the candy, means nothing to him. He is in his GLORY. It is fun to watch. I mean really fun to watch.

The little little kids who were out last night, would look up at Daniel and be in awe. They thought he was a "real" clown. They'd say, "mommy look at the clown, hi clown, wave at me clown!" "Shake my hand clown" and my favorite, "can I honk your nose?" Daniel and I were sitting on a bench at the end of the night. We were tired and waiting for my husband to come out of one of our favorite restaurants with food to go. A little boy say us and was giggling up a storm. He was circling us and asked if he could grab Daniel's nose. Daniel says, "look it honks" and Daniel honked it. (HE LOVES THIS FEATURE) then the boy asked if he could and Daniel leaned forward so he could. He made that kids day. And they both made mine. He somehow came alive socially under that clown costume. Here he is on the bench. It was really something. He usually does well with 3 and 4 year olds since really, they have a lot in common. Daniel still enjoys a lot of the same things as kids that age and they think it's amazing this giant person enjoys it.

It was really an amazing night. We were all exhausted. Thankfully, the school had today off. The boys slept in until 9:30 (YAHOO FOR ME!) and got rested up. After all, tomorrow we get to dress up and do it all again! But this time. . . he says he wants his face painted. . . we'll see how that goes! That would be another first for Daniel, but he's determined, so somehow I think he'll do it. He's already told me he will have a white face, red smile and blue triangle on his eyes....the kid has vision!

A new frontier

I have eluded to resumes and jobs on this blog. It is something that I wondered if I'd ever be able to do again. The problem, as any parent of a child with special needs knows, is that we are "on call" 24/7. Occasionally I'd think, "maybe I can start to look for something very part time", just this thought process would set of a chain of events that would bring everything crashing down around me. The universe telling me, "not right now".

A few years ago I allowed the thought in my head and within two hours I was sitting in the principals office of Daniel's 5/6 building. They had called me because they were unable to calm him. I don't remember the circumstances, but I do remember sitting there, texting my husband with tears running down my face.

Am I someone who needs to "work"? No. Actually let me correct myself. I work my ass off. All the time. I'm very very good at what I do. How about have something of my own and get PAID for it? From here on out, it will be "get paid"! No I'm actually pretty content doing an excellent job at home. Keeping on top of Daniel's school, being able to be proactive instead of reacting to problems. Keeping our house in acceptable conditions. This is what I do and have done for 12 years, almost to the day. After I had Daniel, I went back to work for 9 months. At his first birthday I quit. I was working full time, living in the Detroit area. I'd drop him off at day care early and pick him up late. It killed me. I quit and said we'd figure it out, which we did. I can't believe that was 12 years ago. I remember coming home after a long day of work and having Daniel open his 1st birthday presents. Two days ago I sat here and watched him open his presents for his 13th birthday. The fact that 12 years have rushed by me is astounding. I know everybody says that, but it's because it is true.

Let me rewind how I have come to this place. Over the years here I have become very involved. I am part of our Special Ed Parents Organization. For them I sit on our school district wide parent council. I am the voice of the special needs kids. I'm on my third year of this. It has allowed me to get to know school board members, and the superintendent. They have said to me, that just my presence there helps them to think of an issue in a different way, one that involves "our" kids. That makes me proud. I hope that my time and input has helped shape the way our district makes decisions. After I started blogging more last fall, a mom in our district was reading it regularly. I knew her, as Zachary and her oldest are the same age and have played on sports teams together. We didn't know each other well. Our relationship grew and one day she said, "you do amazing things and need to get paid for it". I thought, yeah right. Eventually, through her, I became a part of a group that meets for the Michigan Family to Family Health Information and Education Center (F2FHIEC) (that is a mouthful) I was brought on to help spread the word to my contacts about the wonderful services they have to offer special needs kids and families. They paid me a stipend for my time. It's only once a month, but it was nice to get a check for my time in a meeting!

This same friend then told me she heard of a job at the ARC of Michigan, a State organization for developmental disabilities. They received a grand to hire parent mentors throughout Michigan. Jodi, (said friend) was in a meeting and told them she had their Lansing person. I wrote out a resume and sent it in. In the meantime I was at a different meeting and someone approached me and said exactly what Jodi had said to me months earlier,

"do you get paid for what you do?" She asked.

and I answered "no".

"do you want to?".

"yes, if it works for my family". I answered.

That's the kicker right? I didn't think I'd be able to find something that I could work in. The person who approached me from this meeting worked for UCP (United Cerebral Palsy). They were looking for an advocate. The advocate is not just for CP it is for all disabilities. It is a very limited job. 8.5 hours per week on average. I thought it sounded like a great way to test things out. I interviewed and was offered the job. But meanwhile the Arc job is still out there. I have an interview next week with them. I was very torn about this because I really wanted to hear what they had to say. This job is 20 hours a week and is a Parent Mentor position. Helping families learn the ropes. Training them to be proactive, if need be referring them to an advocate (the other job I accepted). Then an amazing thing happened. When UCP offered me the job they said they really wanted me, but they knew my resume was in at the ARC. They gave me their blessing to interview there and if I decided it was a better fit, gave me their blessing to take it with no hard feelings. But they wanted me for as long as they could have me. What an amazing offer! It took away my stress. I really didn't want to commit to one then immediately look at another job. I don't work that way. I commit to something and stick to it.

So currently I am an advocate for UCP. I have an interview next week. Daniel just turned 13, I just celebrated my 20 year anniversary. I've been waiting for the other shoe to drop. The only thing that happened is Zachary's school is closed for the next 2 days from Swine flu. He is currently well. It's an exciting time for me. It's nice to know those years of going to meetings for "free" and working so hard ended up creating a really nice little resume. After not working for 12 years I was told I had "tons of experience as an advocate". I'm proud of that. It's amazing to be recognized for what you've done. My brain is still trying to catch up to all of this. But I am very thankful for the opportunities that have come my way. It is exciting to think that all I have learned can be put to use to help other families. It will also be exciting to get a small but consistent check every other week!

Times are changing in the Sneathen household. I think it will be for the better.

Lands End Pants

I have written before of my love of Lands End pants. Styles similar to this.

I have about 10 pair, of this style of pant in a 16 husky. They are perfect for kids like Daniel for the following reasons:

1. The fabric is nice, not rough, not scratchy.
2. They don't have buttons, but they look really nice. With a decent shirt untucked you would never know that they are elastic waist.
3. For kids who are wider (or slimmer) they come in husky or slim.
4. They are exceptional quality.

There are probably many more reasons. But this is enough of list isn't it? These pants, while expensive have really been a wonderful thing for us. Daniel is unfortunately in the largest size right now; 20 H. Therefore my mind is in problem solving mode of what the heck do I do next?

The reason I am posting this is I am boxing up things to give to charity. It occured to me that someone who lives with a child with special needs may really really need something like this about now. So here is my deal. If this size works for you or someone you know and you are the first to take dibs, I will send these to you. The only cost on your part will be to pay for shipping. Once you give me the address, I'll get an estimate and see if it's agreed upon. Then I'll send them off with only the cost of shipping to you.

I would rather have these go to someone I "know" who may need them. Any takers?

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!

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!!

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.

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.

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!

Stinky, School, Clothes, Weekend

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

School:

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. . .

Smelly:

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?

Weather:

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.

Clothes:

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....

Resume:

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!