Thursday, January 28, 2010

Sticks and Stones

Sticks and Stones can break my bones but names will never hurt me. That was a chant that we used to say over and over as a children. I can still hear it ringing through my head in that sing song voice. I wish it were true. Broken bones can heal, but sometimes the sting of some one's words have a much more lasting impact.

This is something my friend have been "talking" about over email for a week now. Last week her daughter came home from school very upset after listening to an exchange between two of her classmates. It went something like this, "you are a retard" "no you are" "no you're a retard". You get the picture. Emma had been prepared for this day. Her parents had prepped her on what to do. She was to stay out of it and come home and tell her parents, which she did. You see Emma has a brother with Down Syndrome. I have written about my friends here before. She has a blog, find that here. Amy, the mom and my friend, emailed me about what she should do. She was very angry and hurt and her words broke my heart as I was reading it. I could feel her rage, and her disappointment. It's never easy to see your child wounded with words. I suggested she email the social worker at our elementary school. I have always found her to do a tremendous job teaching the children about things like this. I am convinced she is the main reason most of the children in Daniel's class are wonderful advocates for him. She followed my advice and emailed the school and suggested that they look into this link.

Monday Emma came home and said that all the 4th grade (it appears that it may be more of the classes too) had a time with the social worker and principal. It had been a difficult subject for Emma to hear. She cried during the discussion. My heart ached for her. Much to my surprise (and genuine delight!) my son Zachary stood up and added his two cents (being the noble advocate that he is). He talked of his brother Daniel and some of the challenges he faces. He has done this before and it seems that the social worker and he are becoming quite the tag team! Emma felt very grateful for Zachary standing up and giving his speech. She felt very supported. I felt very proud. He hadn't even told me about it. One of the other boys said that Emma was "very brave".

When I asked Zachary about it yesterday he told me some of it, but wasn't really interested in sharing. He did say that kids talked about their Grandma's or parents who use the "R" word and therefore, they had no idea it could be hurtful to some people. One girl said she used it in the past but never would again. Zachary couldn't understand why adults might be using such language. We talked about that for a bit. I told him that maybe no one every explained that it is wrong, maybe they choose to use it anyway. But for sure they don't know if they are never told. It sounds like it was a very good discussion and it sounds like many kids responded to it. I'm very proud of Zachary that he continues to advocate for the kids that can't always do so for themselves. I'm proud that he supported his friend, when mostly no one else did. I'm proud that he is so self assured that at barely 10 he has the bravery to do that. I am mostly thankful that Amy and I can keep up the fight to be accepting of everyone, and we can do it togther and that our kids will be behind us doing the same. I'm hopeful that we can change the "R" word to a more positive one, like Respect.

As I was finishing this blog this story came across from disabliity scoop. Read about white house chief of staff Rahm Emanual being quote in the Wall Street Journal asying "f_ing retarded". Read about that here. Apparently, we have a lot of work to do. I for one, am hopeful.

Wednesday, January 20, 2010

Look, It has a Handle!

Yesterday was a very exciting day for Daniel. A large package was waiting for him when he arrived home from school. He has been eagerly anticipating it for several months now. He was one happy child and honestly, it is partially because of this blog!

I had written about Christmas and the VTech Little Smart Alphabet Picture Desk he so coveted a few times. Several days after Christmas he had finally found the words to tell me that Santa had brought the WRONG one. Since that time I had been scanning the internet sites looking for the "right" one with little luck. I had found one, but the guy selling it had a TERRIBLE seller rating and a few comments from angry buyers looking for their product. I thought that was probably a disaster waiting to happen, so I didn't bid on it. The only thing worse than the wrong one, is paying for it and it never arriving! So I played it safe and kept looking. I couldn't find it. Every few days Daniel would ask about it and say in his sweet voice, "but I really want that". It might sound demanding here, but he says it with such love and longing and really, he almost never asks for anything. When he a. finds something he loves and b. finds the words to ask and express his desire, it is almost more than I can handle, and I want to find it for him. Daniel's requests were getting less frequent as time was passing and it was slowly working itself out of my head.
Then I received an email from a reader. She is also a friend of mine who lives here in East Lansing. She has been very supportive of my blog and of my family. Her daughter and my youngest son, Zachary, are the same age. She sent me a very nice email about my blog then had a link at the bottom saying, "you've probably seen this, but is this it?" I clicked on it, and it LOOKED right to me, but I've been down this road before, and I was wrong. So I decided that before moving forward I would wait and show it to Daniel. After school that day I showed him the link and his little eyes lit up and he said, "let's get it". I tried to explain that it was on E-Bay and you have to "bid" on it and there is a possibility that we might not win. There was something like 5 days left on it, but I put in the first bid and let it sit. Zachary, being ever so helpful, said he was SURE we'd win because who else in the world would want that? I told him he may be surprised, because it is amazing what people want out there, and if we wanted it, why wouldn't someone else in the world? He was doubtful.

When Sunday rolled around I remembered that it was the final day. All day I kept telling myself DON'T FORGET TO WATCH EBAY, DON'T FORGET TO WATCH EBAY. I'm not very good at that sort of thing and I've been known to let the deadlines slip by unnoticed. I hadn't mentioned it again to Daniel, for fear of losing. When I checked back, two other people had bid on it. There was going to be a war....I knew it. I waited until just before to up my maximum bid. I talked to my husband about what exactly were we willing to pay for this thing? I was starting to feel anxious and just wanted to win, which is of course why E Bay is so wildly popular. Obsessive people like myself get carried away and pay way more for something than they should. It makes the seller happy and everyone is a winner...sort of. The only good news to me is that both of the bidders were amateurs like myself. You can see how many items people have bought, so I sort of figured they wouldn't have one of those programs that outbids me at the last possible second. Which has happened to me, by the way.

Anyway, we won! Now I just was hoping it would arrive and WORK. As I mentioned, it did arrive, yesterday, with batteries included. I waited to open the box until Daniel was there to do it with me. It came out of those Styrofoam peanuts and I swear you could hear the angels singing! He said, "oh there it is! It's the right one!" He sat down and started playing with it. Ignoring his usual after school rituals. He hadn't moved one foot from the spot where we opened it. I suggested he get his snack, because if he doesn't eat he gets super crabby. Zachary and I were playing Rummikub in the kitchen and Daniel, instead of bringing the toy with him to the kitchen, was getting his Saltines out (10 of them exactly, not broken in any way please!) and his Poptart (I know, terrible) and he kept sprinting back into the family room to hit a button when it would start playing. Back and forth, not wanting to miss a thing. It was so adorable! He was IN.HIS.GLORY. It was wonderful.

Eventually my husband came home from work. Daniel was still playing. He showed it to Todd and said "Look it has a handle" as if that was the most important thing ever, it implied portability, I'm sure. It was finally Christmas morning in the Sneathen house, as far as Daniel was concerned. Thanks Michele (I am not talking to myself in the 3rd person, that's who sent me the link :) You are an incredible friend!

Seriously? How happy is he? How cute is he? Notice the box right behind him. That is how far he made it. This falls under the category of "better late than never". Merry Christmas?

Tuesday, January 19, 2010

What's for dinner?

I am sure that I have written about food before. Frankly, I'm feeling too lazy to look back and see what words of wisdom I have spouted. Those of us with children "on the spectrum", or if they are on the spectrum and probably anyone who spends time with kids on the spectrum, know that food is a hurdle. It's rough. The desires, the textures, the "diets". They can run our lives.

The Sneathen's have never done "the diet". I am constantly asked if Daniel is on the gluten free/casein free diet (GF/CF). He is not. He is almost on a self imposed casein free diet (dairy for those unschooled). He used to drink milk when he was a toddler. He drank milk, ate grilled cheese, put cheese on his beloved hamburgers. He slowly phased this out of his life. First he cut milk. Then stopped the grilled cheeses and eventually, as happens with him, he stopped the cheese on the hamburger after an unfortunate incident in a Johnny Rockets. He saw the stringy cheese on his burger and started gagging profusely. I was sure he'd throw up on the table, but we got it away from him fast enough and the gagging ceased. That was it for cheese. That is usually the way a food disappears. He will go along eating it and one day it will make him gag or even throw up and it's gone. That's what happened to oatmeal. He ate it every day for months and months then one day he took a bite, calmly stood, walked to the bathroom, threw up and has never eaten it again. I find it only slightly gross and even more fascinating. It's not even usually a spectacle, he just pukes and says he's done. Weird.

Cheese is on his list of "hates". Now that I'm writing this, I do realize I have written about pizza, which is where I'm going with this. In the past year or two he has wanted to eat pizza. I find this to be a positive, since generally, pizza is associated with being social as a teen. You have a party, hang with friends, and pizza is sure to be involved. He nibbles on it like the squirrels in our back yard who have been eating our gingerbread house. Tiny tiny bites, very slowly. His pizza consumption has been limited to Little Caesars because there is hardly any cheese on it. It is a widely chosen pizza for parties, because around here you can get a large pepperoni for $5. They call it "Hot and Ready", which I never really thought about the suggestive nature of that tag line, but you can walk into a Little Caesars, pay $5 and walk out with it immediately. Hence the "ready" part. It's a good deal. Not the greatest pizza, but great for parties. Daniel nibbles away and tentatively asks, "is it just dough?" He is asking if the cheese is dough. He has convinced himself this is the case, and frankly I don't fight it. I smile and nod and he goes along with it. Todd and I are sure he actually knows it's cheese, but is the classic case of not thinking about what you are actually eating. It's just easier that way.

I, of course, realize pizza isn't the healthiest of foods and that many many people with autistic children are trying to get their kids OFF of dairy. But for some reason, I would like to add pizza to his limited repertoire. Daniel, actually does well with his "sides". He will eat as much broccoli, green beans, and carrots as you'll put in front of him. Same with pears, bananas, cantaloupe and watermelon. He'll eat "salad" which for him is plain romaine lettuce. He'll also eat other green vegetables but not with as much enthusiasm as broccoli and green beans. Our main food problem is his lack of variety with an entree. He will only eat a hamburger (plain) and a brat (but barely) and blueberry waffles (plain). That's it. So it would be nice, if we are away from home if the kid would eat a slice. He is getting so big (5'7" and 170 pounds), he's a teenage boy, and he needs a LOT of food. I'm trying to increase the fruits and vegetables, but that only goes far.

Last night, I ordered a pizza. He has his speech social group from 5:30 - 6:30 and it seriously cuts into dinner time. I, personally, could eat pizza all day every day. Marco's, is my pizza of choice right now. It is GOOD, but well, cheesy. Which to me, is a good thing. I ordered at the end of group and drove over and picked it up on the way home. Daniel was commenting in the car how delicious it smelled. He had already eaten some before group, he can't make it that late, so he had waffles, pretzels and a huge pile of carrots. (gluten gluten gluten). At home, I opened the box, and Daniel was still hovered over it. I asked him if he'd like a piece. He never had Marcos before (since there is you know, more cheese on it). He very enthusiastically asked for some. This is how the conversation went:

Daniel (taking a bite)-Does this have cheese?

Me- Yum, isn't that good?

Daniel - Is it just dough?

Me- smile like an idiot.

Daniel- (still nibbling) Are these strings, CHEESE?

Me- What do think? (The classic parental reflecting)

Daniel-It's fine.

I'm not sure if the, "it's fine" means it's ok if it's cheese or that it tasted fine. But I for one, try to avoid lying. It doesn't go over well with him and I'm leaving it up to him to figure it out. My husband was in the next room with our other sick kid laughing at my avoidance of the questions and Daniel's constant questions. When he finished his slice he said, "that was good", cleared his things from the table and walked away. I'm considering it a positive. Except for the fact that I have to share. I'm not a great sharer to be honest with you, but I'm willing, to make an exception!

I feel like the gluten free thing is knocking on my door again. We have a Dr. coming to speak at a parent group. I can't attend due to a meeting for my new advocate job. But it keeps coming up over and over lately. A sign or just coincidence? Why do I feel some guilt about not giving this a go? Who's tried it? Did it help? I'd like some feed back. In the mean time, I'm going to heat up my pizza for lunch.

Saturday, January 2, 2010

Top Ten for 2010

Holy cow! I haven't written a blog since December 12! How can that be? December is one of those months that is for sure. We had a pretty low key Christmas here. I didn't go crazy this year for once but everyone, mostly, came out happy.

Daniel has taken a big jump, language wise, and we are overjoyed every day about it. I decided as a summary for the last several weeks to give a count down of what we have been up too. Sort of a shout out to the new year countdown and a few things I'm thankful for.

10. December is finished. Besides the obvious holidays December included TWO count them two full moons. In our house that means very heightened yelling and uncontrolled emotions. The thing that is frustrating for Daniel is he has no idea why he is feeling so completely uncontrolled and out of sorts. It's frustrating for everyone. He really scared Zachary on this last one and didn't hurt him physically, although he "poked his foot" hard and pulled up from an all on attack at the last second. Since Daniel now has 100 pounds and considerable size on Zach, it is easy to understand how this scared him. On the way to Daniel's time out, he scratched Todd. I, as usual, was left unscathed. He definitely is particular about who he goes after....this is going under the category of, "thank goodness that's done".

9. My dad came over for his usual Christmas Eve overnight. My boys really really look forward to this. I made a lovely dinner (Rosemary pork tenderloin at Zachary's request). I knew Daniel wouldn't eat the main part of the dinner but would consume all of the "sides", the roasted potatoes and squash as well as his "salad". (Which is just plain romaine lettuce, but hey, he eats it and it's the healthiest part of a salad.) He had frozen waffles instead of a perfectly prepared (if I do say so myself) tenderloin that melted in your mouth. At dinner Daniel made the announcement that, "I HATE PORK". I did mention to him that no he really doesn't hate pork because he eats bacon at every single breakfast of his entire life...He either didn't believe me that bacon is pork or he doesn't care, because he just repeated that he hates it, with feeling. Teenager.
8. On Christmas morning a very groggy husband got up at 6:30 am with Zachary after mutually agreeing the night before that that was the earliest he could arise. Zachary had been awake until at least 12:30 the night before too excited to sleep. That left Todd and I up until 2:00 am wrapping presents and getting things "ready". Daniel got up about 8:30. He is more of a teenager every day.

7. Later that day in Grand Rapids at the grandparents, Daniel was opening a gift from his aunt and uncle. It was a Wii game "Carnival games". He very enthusiastically said, "Look ANOTHER Carnival Games!" He wasn't rude or anything, he seemed quite thrilled, but clearly stated, we already owned it. It was rather humorous.

6. Several days after Christmas I asked Daniel if he got everything he wanted this year. He replied, "I STILL want the Vtech Little Smart Alphabet Picture Desk." I said, "you got that from Santa." He said, "no, it should have the LCD screen and two pictures for every letter." Oh no. I got the wrong one. It took him two days but he found the words to explain it to me. He then began perseverating about it. I, of course, could only find one in an auction and the comments on the auction were all what a terrible seller this guy is and people had never received the items they ordered after paying. I can't buy from him! My first thought was why wasn't Daniel that specific when he asked for the VTech Little Smart Alphabet Picture Desk for Christmas? My second thought was WOW. Amazing job verbalizing that! He could never have done that, even a few months ago. My next thought was DOH!!! Damn, I screwed up the thing he wanted most of all! Still searching....
the correct but not yet acquired toy...

5. Even though it wasn't on his list I found a great gift for Daniel, Disney's Pixar Short Films. He absolutely loves it. It may be one of his favorite gifts and it is a bonus because it was a total surprise. It features "shorts" from the geniuses at Pixar. Some of our favorites, are "For the Birds", "Mikes New Car" and "Luxo Junior".

4. On December 30 we had several families from our neighborhood to our house to celebrate the holidays and to see one of the families who left us to move to Florida this summer. It ended up being about 35 people for dinner. Yes, you heard me. (now you are understanding why I haven't been blogging). I made the entrees and people brought sides. It turned out wonderful. Daniel came down to see people and noticed that Lily, the oldest of one of the families, and is one of the girls who walks to the bus stop with him every day wasn't there. Later he asked my husband, "Dad, Lily wasn't here?" No. "Where was she?" Working at a basketball game at Breslin (Michigan State's facility) . "A men's or women's game". Men's. "I was sorry she wasn't here". That was an impressive string of questions for fact finding don't you think? This is what I mean by a language explosion! :)

3. New Years Eve, for the second consecutive year, we stayed at a local hotel with friends. This year we had 5 rooms in a block. The boys went swimming on two separate occasions. We brought the Wii, along with several games, including Rockband, Beatles Rockband, and Lego Rockband and rocked it out with our friends. I had talked to Daniel ahead of time about some of the traditions of NYE. Last year he didn't stay up with everyone as he was too concerned about his usual schedule. Since we get a suite this isn't a problem and he can go to bed when he wants and avoid the noise when necessary (which is 95% of the time). I talked with him extensively about the countdown (which I knew he'd like). He stayed up and came out of the bedroom early and helped all 5 families countdown to the ball dropping. He went around and hugged everyone wishing them Happy New Year. He LOVED it. Success. The next morning however we were all tired and the boys had been moved to the pull out couch in the "living room" of the suite while Todd and I were in the bedroom. At about 9:00 am Todd looked out to check on the boys. Daniel sat up and with some anger in his voice said, "are you waking us up?" Todd said "no". Daniel said "GOOD" and laid back down and went to sleep. Teenager! The amazing thing is that this is the kid who, if he woke up at 3:00 am for some reason, he was up for the day. He could never go back to sleep. The hormones are really kicking in.

2. While eating dinner last night, Daniel (as he does at virtually every meal) said to Zachary, "chew with your lips together Zachary". (He tends to smack and it makes Daniel NUTS). After a few minutes, Daniel said with a slightly sarcastic tone, "I thought we were eating with our lips together...." Is sarcasm entering my autistic teens repertoire? That seems hard to believe, but you can't ignore the evidence. I admit I laughed out loud when I heard this comment. It makes it easier to take the snide comments when you are just happy it sounds somewhat normal. Zachary responded, "ok if WE are, you need to too...." ahhh the sound of sibling bickering, I've never heard that before, it's actually music to my ears.

1. Since I'm doing numbers I'll mention that this is post number 150. When I first started this blog it was to communicate with the therapists at Daniel's school. Then they could find out what he is up too, ask him appropriate questions and help him with his language. Funny that on number 150, I'm talking about how far his language has come. It sounds like a great way to start the year to me. Happy New Year Everyone!!!! I know one thing, living with autism you know there will be highs and lows, but it will always be interesting. I can't wait to see what the year brings to us!