Sunday, November 22, 2009

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.

Sunday, November 15, 2009

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.

Thursday, November 5, 2009

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.

Tuesday, November 3, 2009

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.

Sunday, November 1, 2009

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: