The Empowering Long Island’s Journey Through Autism (ELIJA) School has provided some great travel suggestions for the holidays. First, they suggest preparing your child for the destination, with photographs, a count-down calendar, and itinerary. Second, if you are travelling by plane, check with the airport to see if they would allow you to bring your child for a trial run. Third, if you are driving, try leaving in the evening so that your child may sleep, also bring favorite items from home. Fourth, if staying in a hotel, again try a trial run and look for hotels with a pool or hot tub. Finally, if you are staying with friends, show your child photos of the house, and prepare your child’s favorite snacks, and let your friends know of any helpful things they can do. ELIJA School, in existence since 2006 provides education for children with autism as well as outreach service for parents and professionals.
Read original article: The ELIJA School's Holiday Travel Tips for Parents of Children with Autism
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Responding to neurofeedback
Feb 2, 2011 by Monkey's MomWe have been using neuro feedback for our 9 year old daughter for about 5 months at this point. We also use chiropractic re-adjustments twice weekly to alleviate the pain and pressure on her spine as well as allowing the nerves to communicate properly. She now after almost four years is able to recognize pain and say it is pain instead of acting out. She has a combination of problems, along with ASD, she was severley abused and neglected prior to being placed with us as a foster child. She has probably had some in utero chemical exposure, although that was denied prior to adoption and she was born to teenage parents with a familial history of mental illness. She has been out of that environment for almost four years now and is adjusting very well.
The good news is I was able to take her to an unfamiliar major urban area, we live in the country, for a two day group tour. She was able to manage the subway, museums, city noise, a large hotel, the holidays and a very busy schedule for the entire two days without any tantrums, outbursts or behavioral issues for the entire two days and on the train ride to and from. She has also not been in the "quiet room" this year at school either.
We at this point are attempting to decrease some of her meds. It has been a little hit and miss trying to get the correct frequency and locations when we are trying to correct or address specific behaviors. When the doctor places the electrode on an area that he knows on other children will treat obsessive behaviors, it activate her frontal lobe and she becomes alomst manic prior to and after her meds wear off.
It takes really knowing your child and a good relationship with the provider as well as working very closely with her school contacts and teachers. Communication is key if this is going to work at all. If we don't communicate she doesn't get the treatment she needs and it may take several weeks to get back where she was before something was changed.
So as a parent I feel it is truly worth everything it takes to get this accomplished. Just be prepared for things to happen you didn't expect, either good or bad and find a provider that is willing to re-adjust a treatment when something goes wrong. Be patient as you may initially see results for only a few days at a time. Then understand that not every child is "wired" the same and until their is a good relationship between client and provider and an understanding of what does and doesn't work it will, be experimental for a little while.
A new mania
Dec 22, 2008 by AnonymousWow, did Christmas ever sneak up on me this year! I thought I had a handle on things, but here it is, Christmas Eve-eve-eve, and Thomas turns six tomorrow. I should watch the old video of us opening presents with newborn Thomas nestled in the crook of his dad’s arm, looking around at the bright, decorated-for-Christmas world. I’ll not watch the video of me swollen to the size of a Dodge Caravan, limping to bathroom for the millionth time to check my staples. Despite my diligence, the incision became infected anyway and Thomas’ first few weeks at home were full of visitors – visiting nurses, that is.
The last week of school before Christmas break was so cold! School was cancelled on Friday which was a bummer for the kids in Thomas’ class; everyone missed out on their holiday parties. Thomas didn’t mind so much because he’s always apprehensive about anything out of the ordinary. I was especially disappointed that Hayley’s holiday sing would be cancelled, but I received an e-mail saying that it was rescheduled to 6:30 p.m. on Friday, so the whole family was able to go. Thomas had a really hard time sitting in the audience and being quiet, but nobody seemed to notice or care. After the kids finished singing, Santa Claus came in to hand out gifts to the preschool students. When it was Hayley’s turn, we asked if Thomas could talk to Santa too. Santa, as usual, was completely obliging, thereby saving us a hectic and stressful (and expensive, because they rob you for those pictures) trip to the mall on Sunday. Woo-hoo! I got a few pictures, none of them terrific, but it was good enough.
Thomas’ birthday party was on Saturday and up until the morning of, he was not into it. “I hate my birthday!” he was saying over and over. “There’ll be enough time for that when you’re a grown-up,” I answered. He understands that grown-ups don’t like getting older. Anyway, the morning of his party, he decided that he was excited and that he “loves his birthday.” Every time he says he hates something, I try to explain to him that he doesn’t really hate it, he just doesn’t know what to expect. He agrees with me on that. Now, the trick is to get him to say that he’s “a little worried” instead of “I hate it!”
Since tomorrow is his birthday, I was going to make him cupcakes or cake, whichever he preferred. He wants nothing. That’s what he said. Actually, I kind of think he’s just not a “cake person,” like me. I prefer fruit pies to cakes personally, but he wanted ice cream for dessert last night instead of leftover cake. Maybe we can make gingerbread men instead or something.
Santa has told me that he is indeed bringing Thomas the Lightning McQueen bicycle that he wants for Christmas. He’s also bringing the matching helmet and elbow pads, of course. I have already placed the old tricycles in the garage very quietly and nobody seemed to notice, so that’s really good. I’m just thinking about Thomas riding around the living room and dining room on Christmas morning, knocking things off shelves and the Christmas tree…bikes were always a popular Christmas present, but who can actually ride them in Chicago on Christmas Day? Which reminds me, Santa made the tires on the bike and didn’t put air in them…Mrs. Claus had better find the old bicycle pump in the garage.
So tomorrow is Thomas’ birthday, then we go to my mother-in-law’s on Christmas Eve for dinner and presents and then on Christmas, we’re going to my Uncle Bill’s house. Only thirty people are coming this year! It will be an intimate gathering for once, which will be good for Thomas. I think that some Christmases, there have been sixty or more people present which always seems more like Oktoberfest at the local fairgrounds than Christmas.
It has been so cold here that going outside with the kids – to play in the snow or just go for a walk – has been impossible. I can’t imagine another three months of this. It has to get better, right? Actually, I heard a meteorologist say that “they” expect December to be the coldest out of the winter months here in Chicago. Jonathan has been missing time at work not because of the bad economy but the rotten weather. I hate worrying about money and work right before the holidays, but it’s hard not to. We’re lucky he has a job at all. I’m still trying to find something I can do at home, but I’m discouraged by all of the scams out there.
Thomas has a “new mania,” like Mr. Toad in “The Wind in the Willows.” He loves playing with Jonathan’s PSP, which is a hand-held game console. We cannot get him to put this thing down. Like all of Thomas’ phases, we expect him to grow out of it, but it has been a real struggle trying to put time limits on this thing. I got it for Jonathan for Father’s Day a couple years ago, and it turns out that it was the worst decision I’ve ever made because when Thomas isn’t playing with it, Jonathan is. At any given moment, one of the men in my life is completely zoned out.
This will be my last post before Christmas, so I wish everyone a safe and happy holiday and a prosperous New Year. I especially mean the prosperous part.
Spooktacular!
Nov 4, 2008 by dankohnIt has been a rather eventful time for us since I last wrote. The Halloween Spooktacular was a lot of fun and the kids had a good time playing the little games. I made what was surely a very tasty and attractive pumpkin spice cake with cream cheese frosting for the Cake Walk, which we struggled valiantly (and in vain) to win back. When we finally did win, we were allowed to pick only a small treat because they were only giving away the big cakes on the quarter-hour. We were bummed and all we got for our efforts were three lousy cookies. It was nice to know that my cake was one of the “good” prizes, though.
Thomas’ teacher was at the fun fair conducting the Mummy Autopsy in the Haunted Courtyard. She was really funny and had a very convincing witchy cackle. Thomas was a little freaked out at first, but he (and Hayley) finally recognized the teacher and she watered her character down a bit so as not to scare my children in particular. Thomas really seemed to enjoy all of the festivities and after we finished up at the Spooktacular, we went to Grandma’s cottage.
Thomas had a difficult time at the cottage. There were a lot more people there than he was used to (good for us pier-workers, bad for the autistic boy) and all of the noise and bustle in the house was confusing and hard for him to handle. On Saturday, when we went outside to work, he did a lot better just being in the more open space and fresh air. The weather was actually pretty great. If there’s anything worse than working on that pier, it’s working on that pier when there’s drizzle stinging your face.
Thomas really liked using the leaf-blower, which we let him do because we’re idiots (again). Actually, it wasn’t that idiotic and it helped him. The vibration of the motor and loud noise really kept him focused and he did a good job blowing the leaves into the fire. Yeah, we had a fire going too. Jonathan was supervising and Thomas and Hayley both know to stay away from fires. Hayley actually learned about fire safety in preschool (where they CONTINUE to spell her name wrong…) and runs around the house saying, “Oops! Your arm is on fire! You better stop, drop and roll!”
After we finished with the pier, we went to the little country pumpkin farm. We don’t even go to the big, commercialized pumpkin “farm” near our house anymore. You should see how much they want for a pumpkin these days! So we go to the little country pumpkin farm up north and choose pumpkins. This place is so cool…you pay on the “honor system” meaning that there is no personnel manning the check-out counter. You just figure out what you owe and put the dough in a box. They have a tiny hay-maze, a big old tractor for the kids to sit on and this year, they had a little silo filled with corn and trucks. As you can imagine, getting Thomas out of the corn was a chore, but he loved playing in it.
We came home on Sunday and started getting ready for Halloween. As is characteristic of Thomas, he was not excited about Halloween. He still didn’t want to trick-or-treat, but as the week went on, I just didn’t let it go. We kept talking about the party at school on Friday so that by the time Friday came around, he was excited about going. Hayley and I walked Thomas to school, then I went to Hayley’s school to watch her costume parade and take pictures and then I booked back to Thomas’ school to help with his party. I put on my Cleopatra costume in the hallway before entering Thomas’ room. His teacher was a very fetching Snow White and one of the other moms was a pumpkin so I wasn’t the only goofy grown-up there. Thomas did really well; he participated in the craft (a little magnetic Candy Corn with his name on it), played Pin the Nose on the Pumpkin and played Spooky Bingo. We then went on a classroom parade, going through the other, big-kid classrooms. Then it was back to the room for cupcakes and cookies, not to mention all of the candy that other kids brought to share with their chums. Then we walked to go get Hayley (I, still wearing my Cleopatra costume. And pulling the wagon…) and then we walked home. Hayley’s backpack was really heavy and I couldn’t imagine what was in there until we got home and opened it. It was full of around five pounds of snacks and candies that classmates had brought. I felt like a deadbeat because I didn’t bring anything, but it looked like the kids had more than enough. With the amount of candy they brought home, we really didn’t NEED to trick-or-treat at all. But we did. My niece Julia looked adorable in her girl’s pirate costume. The kids did a good job, except that Thomas had the same problem as last year with staying by us on the sidewalk. He was running ahead and then running back to us but sometimes he would run a little too far ahead. I know it was definitely not his fault, what with all the sugar in his little body. I would also like to take this opportunity to thank all of the parents out there who gave out pretzels and whole-wheat crackers! God bless!
When we got home from trick-or-treating on Halloween night, the kids were absolutely wired. We tried to get them to eat some form of protein – anything at all that could be considered good – and were only partially successful. Hayley chose scrambled eggs which I whipped up with the enthusiasm of a TV chef. Thomas I believe finally settled on some kind of bread product and wouldn’t be induced to eat any kind of meat. Oh well. Halloween only comes once a year, followed shortly by the holidays. But seriously, only once a year. Like Easter. And vacation. And Valentine’s Day…
We had a party for Jonathan’s birthday on Saturday. His family came over and we had a very pleasant dinner for him. Thomas was okay with the whole thing, sort of. He didn’t want anybody to have any cake, EVER. I just wish I knew what that meant. He says stuff like that, but it’s one of those things where you know he doesn’t mean what he’s saying; he means something else. I just can’t figure out what he means. I’m still working on it.
Thomas’ report card came home yesterday and it was very good. He has either mastered or is progressing as expected in most skills. He still needs more work on remember his address, phone number and birthday. He also needs to work on holding writing utensils properly, but other than that, he’s really doing well. I meant to ask his teacher if he’s being evaluated just as his classmates are or if she uses a more lenient scale for Thomas. I would like to assume that he is graded on a par with his peers, but whenever I’m in class, I can tell that she’s being a little more patient with him than she is with some of the other kids. That could just be because I’m in class or it could be because she knows that certain things are harder for Thomas. I volunteered in class today and meant to ask, but forgot. She kept me busy filing, cutting, laminating and working with certain kids on recognizing letters. I had not a moment to think!
Coming up, we have…very little. My birthday is in a few weeks and I need to think about what we’re going to do for that. I hate making these decisions. It feels like I’m trying to throw myself a party. We used to go out for birthdays, but a couple of years ago Jonathan and I decided that it’s easier with the kids and everything if we just stay in and order pizza. Well, staying in and ordering pizza evolved into staying in and hosting a dinner party and Jonathan’s birthday party was every bit as stressful and required almost as much preparation as one of the kid’s birthdays. So I’m thinking of just saying that we’ll all go to Chili’s for my birthday because I don’t want to have to do as much work for my birthday as Jonathan and I had to do for his.
One thing I will do gladly, however, is accept gifts.
Middle of the road
Oct 14, 2008 by dankohnAgain, I’ve fallen off the weekly-writing bandwagon. Tina’s wedding was this weekend and between fielding phone calls from her (at least twice every day for the past two weeks) and getting last-minute stuff done in addition to my normal chores, there was time for nothing else. She left for her Cancun honeymoon this morning, though, and I know I’ll miss her like crazy until she gets home.
The wedding: a complete and total success! Everything was so beautiful and we all had the greatest time. The wedding party (my sisters and the groom’s friends and brothers) all got along like old friends and I can’t imagine any group of mutual friends meeting for the first time getting along better than we all did. Jonathan and I had a great time – really wonderful. My sister was radiant and we all looked like a million bucks.
Oh, yeah, this blog is supposed to be about Thomas. He and Hayley spent most of Friday, Saturday, Sunday and Monday morning with their grandma. I was a little concerned that it was going to be too long for them, but what could I do? And the promise of a three-day weekend for Grandma to enjoy with the kiddies was too much for her to resist. We could have picked them up on Sunday afternoon, but she said they were fine and were expecting to stay through to Monday. Jonathan and I certainly needed a day to rest and recuperate. I was dancing non-stop from 8 p.m. to 1 a.m. Saturday, the after-effects of which reminded me that I’m getting older. My friend Pegs told me to just do what she does: “Dance, dance, dance, and then don’t move for two days.” She doesn’t have kids.
I e-mailed Thomas’ teacher last week and told her that Thomas would be with his grandmother all this weekend and warned her that after one of those over-night trips, Thomas has a hard time getting back into the swing of things. However, I was at school today to help out and witness his reluctance first-hand. I was right that he would have a hard time. He just seemed really tired in the morning, and he started to have a really tough time just as school was ending. He actually cried a little. The thing is that when I’m at school with Thomas, he tends to want me to do things for him, even though I know he can do them himself. He just expects me to do it, like at home, I guess. I have to remember that the switch from Grandma’s house back to home and school is hard for him. He actually did better than I expected. Hayley was a little difficult too. We’re slowly returning to normal, and if anyone needs a brown bridesmaid dress, please let me know.
Halloween is approaching and Thomas wants to be “nothing, never, EVER.” Again with the drama! He has forgotten that candy is involved, I think. Hayley wavers between wanting to be Belle from Beauty and the Beast, Sleeping Beauty and Cinderella. Who was the genius at Disney that came up with the whole Disney Princess thing? It gets old, though, and I have to keep reminding her that she’s not a princess after all, since Mommy is definitely no queen and Daddy is not a prince.
So how do we get Thomas to settle on a costume? I’m not sure…we might have to just keep suggesting ideas to him when he’s in an agreeable mood. We still have a few weeks, however. Hopefully, they’ll be talking about it at school and he’ll get used to the idea. I hope we can go trick-or-treating with my sister-in-law and her daughter again this year. It was fun last year, but more importantly, short and sweet.
I can’t believe how fast the holidays are approaching. After Halloween, it’s a straight shot to Christmas and another year passes away. Does time go faster as you get older? Thomas will be six right before Christmas, which I cannot believe. He’s looking more and more like a big kid…well, he is a big kid, after all. He’s been potty-trained for over two years, but it seems like yesterday we were working on it. It seems like yesterday that I was working on breast-feeding, come to think of it. They’re just growing up fast and I wish that time could stop for a while. On a good day, anyway.
Report cards come out soon, I heard the teacher say. Today, I was doing assessments on kids in Thomas’ class, mostly identifying and writing numbers. The teacher is going to do Thomas’ assessment, which I told her was good because I might be inclined to help him more than I should. I wonder where he falls in terms of abilities as compared to his classmates. I thought he could do better than some of the kids I worked with, but not as good as others. This one boy in his class is a pistol; always giving the teacher trouble and not listening, but he’s smart as a whip. I wonder if he’s bored with the curriculum. Either way, I think Thomas falls in the middle somewhere. Middle is good – great, even. I’ll take middle-of-the-road any day. Isn’t that just another way of saying “average?” There were times that we never could have hoped for average, so I’m thrilled.