My "Hose" in Band

Yesterday morning I emerged from my meeting at the middle school a very happy mom. We all know that isn't always the case, but when it is, it feels good. Really really good.

Flashing back: when we were setting up Daniel's IEP and schedule last spring I was very focused on getting him para support during lunch. We had dropped it back in about 3rd grade when he sat with "his girls" in our safe little elementary school cafeteria. He continued to be independent during this time. We had had a few minor incidents over the years, but honestly, not much more than MOST kids experience. Middle school lunch sounded like a nightmare to me. It was a new huge place and he wouldn't know half of the kids. I wanted him to have support and also thought that the person with him, could help him find appropriate people to sit with and maybe even facilitate some conversations. I got what I asked for.

What I gave up was support in band. I know. Really? you ask? I know you are thinking I was nuts. Maybe I was, but I was blinded by the lunch room, and actually I had some good reasons for giving that up. One being that his para did not go into band with him in 6th grade. She would check in, she would go get him if he needed to leave, but really, he was pretty independent. So I went along with it. What I DIDN'T take into account was that band was going from 2x's per week to 5 x's per week. The size of the class doubled and they went from 1 percussionist to 4. Had I KNOWN that I wouldn't have made that decision. IEP tip #1: this is why it is a good thing to have the general ed teacher there when a decision is being made about a class. Had I heard that, I wouldn't have agreed to it. Hind site is 20/20.

Rolling forward. A few weeks ago the last thing happened. I keep calling it "the hose". What does a hose have to do with anything? Read on. My cousin and her husband live in a cute house. It is "cozy" and they bought it as a couple with no children. They now have 2 growing boys and a dog. There isn't much room left. The tightness of the space kept building and building. One day the husband bought a hose. He couldn't find a place to put it. There was not an inch to spare, he proclaimed, "that's it! we have to move!". Is the fact that you have a hose with no home a big deal? No. But it was all of the things leading up to it and the one thing that pushes you over the edge. For me I wrote a note in "the notebook" to Daniel's para asking what music they should be practicing at homeand she sent me back a list. I had NONE of the music at home. He'd (again) been practicing the wrong songs for over a week. That music was my hose. I snapped and said "that's it" we need some help. Was the fact that we didn't have the music a huge problem? Not really, but it pushed me over the edge.

I constructed a very long email, outlining all of the issues and problems Daniel has faced this year in band. Tip #2 a calm fact based email describing all of the difficulties he has had this year. I explained the ways we have tried to overcome those difficulties and how they haven't worked. I explained the impact to not only Daniel, but his peers in the class. I explained that it is no reflection on the teacher, she has done her best, but it's too much. Lastly, I asked them to consider giving him para support in this class. Calm, cool, emotionless facts explaining the problem in detail.

I am explaining these tips because I have been working as an advocate now for almost 4 months. The mistakethat I see parents make is that when "the hose" happens they fly off the handle and make a huge deal about "the hose" when it isn't the hose at ALL. This gets you no where with the school district. They'll tell you "it's just a hose".

The school district had someone collect data, there were discussions. The Special ed director observed a class (guess what happened THAT day? Correct, best day of the year! I suggested to her yesterday that she should be there EVERY day :) I had honestly expressed my concerns that he escalates so much that he may hurt himself or go after someone else. You would think I set this up, but he did grab an adult for the first time since the beginning of 3rd grade, while we were in discussions about this, proving my point nicely. We discussed the hormones and how they are affecting him, I explained how he has gone backwards in some areas (physicality) because of it.

So yesterday morning I sat at a table with the Special Ed Director, the Principal, the Special Ed teacher who handles his case, the band teacher, and the AI specialist from the county (and an intern; I love when they get to see how a meeting SHOULD go) and little old me. My husband asked if I was intimidated. No. Not at all. It is my job now after all, but I have learned it is WAY different when it is someone else's child you are talking about. Plus, I think our district really does a great job (IF you present it right)of working through things. These four months of working as an advocate has left me a bit stunned at how some other districts operate. To be fair, it leaves me a bit stunned at how unable and inappropriate some parents are. But yesterday they genuinely understood AND they gave him support during band. So I'm giving the school props where they deserve it. In a super super tough economic climate, when money is no where to be found they chose to do what is best for the STUDENT. What a novel idea! I'm very very pleased. For now, my hose is just a hose.

Yoo hoo, Good Neighbor!

This is why we practice. You have to be prepared ahead of time. I have recently discussed all of the practice with Daniel staying on his own for short spans of time, and our fear when he wouldn't answer the phone.

Wednesday the need arose to quickly leave the house. Zachary was supposed to stay at school for art club. It was the first day back after a 5 day weekend. I had reminded him several times about art club, sent him a snack for it, and still he forgot. This is not like him. He usually reminds ME of these things, but on this day, he jumped on the bus and came home. When he walked into the door I wondered allowed what the heck he was doing home and told him to get into the car, so I could turn around and bring him BACK to where he just came from. Daniel was on the computer in his post school bliss. Making him jump into the car for a frazzled ride to the elementary school would NOT have gone over well. So I grabbed the home phone, called it (so my cell was the last one on caller id) handed it to him and said I would be back in about 20 minutes. He knows the rules. Only answer if mom or dad calls, don't open the door, etc etc. He happily complied. I left.

I pulled into the school only to have my cell ring. I looked down to see my husband's name. I hit ignore. (sorry honey) I wanted to run Zach in to make sure everything was ok with art club and it didn't get cancelled or something. Then my phone rang again. Neighbor Laura. I answered in case there was a naked 13 year old running through the snow or something. There was not (thank goodness) We had a short conversation and hung up. My phone rang AGAIN from Todd. I ignored. (sorry again honey). I dropped off Zach and started to wonder if Todd had a problem or if he somehow knew this madness was happening. So I called him back. Only to have him say, "I didn't call you". It was at that moment that I realized on my cell phone under our home number it says "Todd" instead of "home". (it no longer does, I changed it right away) and my dense self didn't realize it was DANIEL trying to call me.



I then noticed the little voice mail icon on my Blackberry. I called my voice mail stuck somewhere between panic and confusion. Daniel wouldn't leave a message would he? He never has. He has only ever called me once before. If I were more technologically savvy I might be able to download the voice mail to my computer and then to here, but I am NOT. So I can only TELL you what it said, which really detracts from it, but it just said this, "I love you" (think of Barney saying I love you...that is the same way he said it, an example of scripting but using it appropriately and in context). My heart melted. How sweet is he? Calling me to show he can (again) and just telling me he loved me. I called him, I was already driving home by then. I heard him answer, and after a moment of silence he says "YOOOOOO HOOOOOOO!" in a very goofy, high pitched, sing songy way. We chatted and I told him he was doing great and that I got his I Love You message. He was very proud. I could "see" it through the phone. We hung up.

Driving down my street I saw Laura, who had called me earlier. I stopped and we chatted. I told her I was sorry I was abrupt on the phone but was getting bombarded with calls and explained the situation. She understood of course but then shared a piece of the puzzle I didn't know. . . before she called my cell. She called my home phone. Daniel answered it and said, "Hi mom!" Laura answered, "it's not your mom, it's Laura from down the street". At that moment panic must have set in, because he is not supposed to answer unless it's from myself or Todd, so he just hung up on her! Kind of an "oh crap, I'm not supposed to talk to her, so I'll just hang up as fast as I can and then maybe no one will know and it will have never happened" hang up. Which is why she called my cell, to make sure I was indeed home and Zachary and Daniel weren't in a bad situation. I still laugh when I think of Daniel realizing he'd answered the phone and hanging up on her! I am also very grateful to have good neighbors looking out for us and having my back as well as my children's. And also don't mind if they get hung up on occasionally...

Sneathen Adventure

We are home. It is 10:45 am the day after our arrival and Zachary is still in bed. He is exhausted, as we all are, but he is really exhausted. I am reflecting on how much it has affected him, physically and mentally to try something new and I think about Daniel and how much harder it is for him. What does that do to him? How hard is it for him to learn something new, when the rest of us collapse in a heap after putting ourselves out there physically and mentally? It is overwhelming for me to think about.

Backtracking two days. Our family packed up and headed north. Our friends invited us to go to Schuss Mountain in Michigan for a weekend of skiing. It was President's weekend and according to those at the resort, the busiest day of the year for them. I belive it. It was packed.

We arrived late afternoon Friday. We had reservations for tubing at 5:00 pm. After unpacking we headed to our friends condo. This was not enough time for Daniel to settle in. We usually get to a room and he likes to hang out, watch movies and get really comfortable in his space. The problem with that can be that then he doesn't want to LEAVE his space. He doesn't know what's out that door and likes his little hotel room, why leave? Well we were leaving. Right away. He didn't love this idea. But he came along and was griping the whole way. We drove to our friends condo, getting only slightly lost in the complex on the way. This is also not acceptable in the big book of Daniel (bbod) (thanks Aunt Judy!) We made it. Only to get to the condo and have everyone say, "ok, let's go tubing". Again a bit jarring for Daniel. We were telling him these things would happen, but I did not write it down (probably should have) and he seemed a bit confused.

We got to the tubing hill. My thought was this would be sledding at the optimum for Daniel. There was a tow rope, so you hand the circled rope end to the attendant, sit your butt down and he hooks you onto a tow rope. It then pulls you up the hill for a leisurely ride, and pushes you off to the side at the top. You jump on your tube and sail down the hill. It was a blast. No trudging up the hill to the top each time. Here is what Daniel did NOT like about it. These are the things that are hard to anticipate and you have to adjust to on the spot. He didn't like being pulled up the hill backwards on the tow rope. He adjusted that maybe the third time up. When shooting down the hill, I never once did it without spinning around. He did not want to go backwards down the hill. I actually didn't mind it because I wasn't getting sprayed in the face with snow when I was backwards! I believe Todd suggested he go on his stomach, which I would have thought would be uncomfortable and spray snow all over your face. But nope, it worked for him. This is when the tag team parenting is helpful. I would not have thought to suggest that. I guess on his stomach he could change his direction with his feet? I don't know, but it worked and I was happy he was happy! We tubed for an hour, that's what the passes were for and I think the adults were all happy we were limited that way! It was a blast, but we were ready to get warm. Back to the condo.

Daniel survived this back and forth rather well. I don't know if he could have handled it a few years ago. 19 people back to the condo for dinner! I had brought some of his favorite foods, we hung out,he had a quiet place to go to, the kids went swimming! It was all good! Success number 1 complete.

The next day Zachary was signed up for a snowboard lesson. He has never been on a slope of any kind. We went back and forth between skiing and snowboarding. We went with snowboarding. Daniel had been insisting he would ski the whole week, but once we got there he stopped talking about it. I don't know why. Maybe it was the impressively tall black diamond runs in front of the lodge. Maybe it was all of the people skiing around who looked so proficient. I don't know. He can't put it into words. It was overwhelming to ME, so I can't even imagine. I had never skiied in my entire 42 years, so I was feeling a bit anxious myself. For some reason I wanted to give it a go.

My friend Jodi, who I've talked about before, hadn't skiied in 20 years. Todd was willing to hang with Daniel while Zach was in his lesson, so Jodi and I pushed each other to sign up for a lesson. I was proud of us! We had a wonderful 60 something year old instructor named Dave who proved to have the patience of a saint. We spent the hour with him, bought lift tickets and hit the slopes. Zachary and I were pretty frustrated but powered through as best as we could. Daniel continued to watch from a far. We had many conversations about the whole adventure. He seemed to be watching intently and listening as we talked about ski lifts, "magic carpets", and the hills. He took it all in. He decided that "next time" he might go a step further than passive observer who eats snow.

The thing I was the MOST impressed with for Daniel was Saturday's dinner. Most everyone else there would not even know what it took for him to get through it. Dinner for 19, in a crazy crowded (huge) room. In the beginning a musician was playing, there were tv's on everywhere and the noise level was high. We chose a strategically placed seat with his back to the big screen tv. We tend to choose restaurants that are FAST. This was not fast. 19 people in a jammed packed restaurant can never be fast. People were getting up, going to video games, and milling around. This is also not ok in the big book of Daniel. According to him you stay put. We work on this all the time, but he was continuously asking where everyone was going and when would his food get there! After a while he settled in. I'm not sure how long we were there but I'd say almost 2 hours. The promise of swimming after might have helped pull him through. All of the kids got their suits and headed to the pool! I watched from the side, chatting and possible having a cocktail or two...

Todd suited up on Sunday and I hung with Daniel, packed up our room, and had coffee in the lodge. All much more up my alley than skiing down the slopes. (or falling as the case may be) Zachary and Todd did some runs together. Daniel and I watched. Todd's 20 years between skiing seemed to disappear as he went down whichever run he chose (some things are not fair!) and we had a great weekend. I think it will be better for Zachary and I to get a bit more proficient, then when Daniel decides to dive in, we can be a bit more helpful and supportive.

All in all, we had a wonderful time. Daniel didn't ski but there were lots of great activities that he could be a part of. Maybe, I'll improve my skiing? Maybe not. Maybe next time Daniel will give it a go. We so so appreciated being included in the weekend. Another Sneathen adventure is in the books!

A Grand Day Out

Tomorrow we are packing our bags and headed north. We are following the lead of many many Michiganders and going SKIING. Yes, you heard me right. Skiing. Do the Sneathen's ski you ask? No. No they don't. Todd is the only one who has ever skiied and that was 20 years ago.

Zachary is officially signed up for snowboarding lessons on Saturday. We are going tubing on Friday evening as a family with all of the other families going. This seems like a good plan, it will help us get familiar with the area, the snow, the "mountains" (this is Michigan, let's face it, they are really really big hills).

Daniel is CERTAIN he will be schussing down the mountain. He says, "I'm going to ski down the mountain with the Wallace and Grommit theme song in my head". Have any of you seen the Wallace and Grommit claymation movies? Daniel LOVES them and in one of the movies, (I can't remember which one and I've tried to google it and STILL can't figure it out. Where is Daniel when you need him to fill me in?) they are skiing down a hill "with the theme song playing", which is why Daniel will be hearing the theme song in his head.



So my preparations have begun. The food for my picky eaters for two days. Prepping Daniel for the fact that you actually FALL when you ski. A lot. I've been buying ski pants, hats for under helmets (a must), signing up for lessons, getting directions, making food, packing our entire winter wardrobe as well as our pantry. All for two nights at a ski resort. Two frightening, new, exciting, possibly disastrous days "up north". But then again, who knows? It could be fantastic. Either way, I'm sure there will be some good stories. Sometimes I think I must be crazy. But I thank our friends who invited us. I'm glad you are willing to take on the Sneathen's for a few days! More to follow....

Dear Hormones

Dear Hormones,

I have heard about you. Ever since Daniel was a newly diagnosed child with autism, people have warned me about you. I knew you were coming. I dreaded it even. I never thought people were exaggerating, but it's hard to imagine some things until you are in the middle of them.

You have made my guy spring up into an even bigger guy. You've made him as tall as his dad at 13. You've left his dad's shoe size in the dust. You've hit Daniel so hard that sometimes he doesn't know WHAT hit him. You've made him volatile. You've made him angry. You've made him unsure. You brought back the aggressiveness that had become part of his past.

You've brought back the discussions with school, the "reports to administration", the lightning fast loss of control, only to dissipate to show us our sweet sweet boy again. You rear your ugly head, making it hard for Daniel to control you. He could barely contain himself before, but now you take him by surprise. He doesn't know what to do with you and neither do I.

I have been warned about you, from parents, from teachers, from blogger friends, even from Temple Grandin! I knew you were coming and still we can't stop you. It's a part of growing up, a part of development, I know, I know. It's a hard time for everyone! But as usual, for a person with autism, it's even more confusing. For a person who is trying to control his actions 24 hours a day ANYWAY, you make it harder. And for that, I am angry at you.

I am angry that I am back to dealing with aggression. I am angry that you make Daniel feel bad about himself when you enrage him. I'm a little bit angry that my little boy is no more. I think it's a bit harder to accept since in so many ways he still is a little boy. He likes V tech toys, Winnie the Pooh and the Seven Dwarfs. But still you come.

I know we will get through this, it is yet another mountain to climb. Sometimes I wonder if I will ever get over a mountain without seeing another looming in front of me. This is a big one. But we'll make it over you. We may fall a few times, we may slide backwards, we may even start an avalanche or two, but I bet the view from the top of that mountain will be worth it. You are pushing my boy towards manhood, just don't push his mama off the cliff. . .

Home Alone

I have broached the subject of "when to stay home alone" on this blog before. It is hard enough with a "typical" child, but as usual, you throw in the autism shake it up a bit, and you get a mess.

We have practiced. We have done mini trial runs. We have written out rules. We have done phone practice in therapy, starting over a year ago. We have prepared. A lot. We have left him for 5 minutes, 15 minutes, been across the street, at the bus stop, the list goes on and on. I leave the phone with him and call him during these trials and he answers, sometimes not saying anything, but it's practice.

Saturday came, and it was nearly time for Zachary's basketball game. It was pretty clear that Daniel would not be ready to go in time. The game was at noon and the precision timing of lunch and dressing on a Saturday was not coming together in our favor of getting Daniel out the door. He can't be rushed and he has to get everything "done" or you might as well not go out. He'll be a wreck and it will be miserable and we'll pay for it in some way or another. As this was unfolding Saturday I said, "Why don't we leave Daniel home, he can eat his lunch and stay on the computer". My husband was surprised at my leap of faith. He stated, "I didn't think that was an option, but I think it's fine". So I quickly went over the rules, made Daniel do a quick practice run on the phone, and gave him his lunch. We were going to be gone for just over an hour. The basketball game is an hour, and we are very very close to home. I was nervous, but ready to take the plunge. It was probably better that I didn't have much time to think about it.

We set him up and left. We got to the game and the first thing out of my friend Jodi's mouth was "where's Daniel!?" I told her and she looked surprised but knew it would be hard for me. We pushed the parents from the game before out of their seats and settled in for 4th grade basketball. We were happily chatting while the teams got ready and my cell phone rang. I froze. I carefully looked at the screen of my beloved Blackberry to see "home" on the screen staring back at me. While Daniel has practiced calling us he has never ever picked up the phone on his own to call someone completely unprompted. I believe Todd said "answer it" because I was just staring at it in disbelief!

me- "hello?"

Daniel- "Hi mom!"

me- "How are you Daniel, is everything ok?"

Daniel- "yeah"

me- "are you just calling me to say hi, or are you nervous?"

Daniel- "I'm not nervous"

me- "are you calling just to say hi?"

Daniel - "yeah"

He was so sweet and I was SHOCKED. What a step! I was relieved. I talked to him for a few minutes and told him how great he did and when we'd be home. I still can't believe it, honestly.

The game progressed, as have the 4th graders skills, and it was nearing the end. I realized I should call him and do the usual check in. I dialed home. It rang 5 times and went to voice mail. My heart starts quickening. I hung up, and called again. Same thing. The quickening is turning into a pounding. He has NEVER not answered before. Never. I think, "he could be in the bathroom, he wouldn't take the phone to the bathroom". I dialed a few more times and nothing. Todd pulled out his phone to try (he is only supposed to answer two different numbers that come across caller id, mine and Todd's) same thing. Nothing.

Jodi says "is this good or bad?"

Todd says "it's very bad" and stands up grabbing his coat. It's the end of the game now, but Zachary has to change his shoes, do the congratulating and it will be a few minutes. Todd looked at me and said, I'm going home. Jodi offered to drive Zachary and I home while Todd went home.

I was trying not to panic. I get an odd calmness in some instances which I achieved then. I actually told myself that freaking out wouldn't help. If something went wrong it already did and I couldn't change it. I should wait before I freak out. Wait until I really hear that something was wrong. I was hoping he wasn't following the script, but that seemed somewhat unlikely. It didn't make sense to me. Jodi praised my self control, but I didn't feel I had much choice. I didn't want to upset Zachary unnecessarily. I also didn't feel in control, my mind was going crazy, but on the outside I went about our business.

We were walking out to Jodi's car when my cell rang. It was Todd. Daniel was fine. He was on the computer listening to music SO LOUD that he couldn't HEAR THE PHONE. I could hear Daniel in the background I knew he was upset. I was fairly sure Todd had yelled at him in his panic. Daniel felt like a failure.

When I got home I went and talked to him. He was red in the face and looked very very sad. I told him how amazed and proud I was that he called me to check in all on his own. I told him it helped me know he could do this on his own. I talked him up. I could see his face turning upwards, and some pride filling him back up. I then had to say it scared us when he didn't answer the phone because that is the rule if he's staying home. He deflated a bit again. I told him we'd try again soon and I was sure it would be better next time. We went on with our day. While I'm thinking back, I can feel the joy of him calling us, and the panic of him not answering. I questioned myself wondering if he was ready. I wondered if my parents when through this stress when they left me alone the first times. Do all parents go through this? Is is more stressful because of Daniel's autism?

What I do know is this. It is important for him to learn these skills, and it's important for us to give him independence. We'll eventually get there. I just hope I live through it!