Thursday, January 28, 2010
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
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
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)
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
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.
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!