Have Dreams, a recreational facility for kids with autism, has some fans among Chicago attorneys. Matthew Johnson’s son has been attending the after-school program for three years. The kids not only do crafts and play games, but they learn socializing skills that help them in other areas of their lives. Have Dreams was founded in 1996 by a group of parents who wanted a place for their kids to feel safe. Charles Gilbert, with the IL attorney general’s office, said his son still participates in some of the activities even though he’s 23 now. Kim Denkewalter, another attorney became involved when he met a young man with autism. He started a golf fundraising event for Have Dreams. This year the attorneys are hosting a fundraiser for Have Dreams that they hope will bring in $400,000 for the program.
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A wild ride
Jun 17, 2008 by AnonymousIt just goes by so fast. All of the planning and preparation to get away for one measly week (not enough time!) and the vacation is over in a flash. We’ve gotten back to normal; the laundry is all done and the bags are all unpacked and put away. We had a really great time, the kids especially! Thomas tried new things this year that we couldn’t get him to do last year and he wore his blue Speedo goggles faithfully all week.
Thomas still has a problem with swimming in the lake. We tried to get him in a few times but the closest we got was when my Aunt Suzy convinced him to splash on the shore. That was better than nothing! The rest of the time, he sat on the pier and watched everyone in the water. My Uncle Jeff and Aunt Paula brought a huge eight-person round floating lounger for people to sit in, and we tried to get Thomas into that too, but he wasn’t going for it. Thomas and Hayley mostly swam in the pools and played with other kids’ toys. We did notice as the week wore on that Thomas was having a generally difficult time adjusting. Going on vacation right after school ends for the summer requires a lot of adaptation on Thomas’ part and we could see that he was really struggling. I find it so interesting that Thomas was clearly having fun and enjoying himself, yet he was struggling inside at the same time. It’s hard to describe that to someone unless they see it firsthand. Thomas was particularly difficult in the evenings while we were trying to get dinner on the table or getting ready for bed. He did a lot of “wrestling” with Hayley (whether she was willing or not). He definitely needs more sensory input at these times of change. Thomas also had difficulty with what experts and teachers call “compliance.” To you and me, that means listening and doing what the hell Jonathan and I say. We had some upsetting times when we had to remove Thomas from group situations because he was being too rough. The last night, we all had a big potluck and ate each other’s leftovers before heading home on Saturday. Thomas was actually hitting us; punching right in the stomach. I realized that he was acting out the boxing game on the Wii because after he punched, he would fall on the ground and start counting to ten. Funny, but unacceptable. I warned him once that if he did it again, we’d leave, so we did. He was really upset and he knew what he did wrong because he kept telling us that he was sorry and that he wouldn’t hit again but we had to put our foot down, especially in front of all those people! It’s interesting how much more motivated a parent is to be firm when there’s an audience, isn’t it?
Thomas did ride the waverunner with Jonathan a couple times. On Sunday in particular, everyone wanted to ride with Jonathan and he was exhausted by mid-afternoon. Thomas dictated whether to go right or left and how fast he wanted to go. He mostly likes to go slow, but he enjoyed it very much. I told him that Jonathan has been dreaming of riding the waverunner with Thomas since before he was born, but I don’t think he gets it. Hayley rode a lot as well. She was very agreeable all week, ready to try any activity that anyone suggested. She rode a lot with my cousin Suzy, but mainly wanted to see the big balloon outside the boat rental place nearby. Whoever rode with Hayley got to idle around the pier a lot.
We went out to eat several times during the week; once for breakfast on the way to Missouri, two nights out during the week and then twice on Saturday on the way home. Thomas kind of ran hot and cold with that. Out of the five times we ate out, two of them didn’t go very well with Thomas. All in all, it was alright. Three out of five restaurant meals were peaceful. On Wednesday night, everyone went to our favorite Mexican eatery, then played mini-golf, then rode go-karts and finally we ended up at the frozen custard place. We all do this every year and it is typically a late evening but we decided to go ahead and try it with the kids. Dinner went fine, but mini-golf was hard for Thomas. He kept saying that he didn’t want to play but we sort of dragged him along. We just kept finishing holes and telling him to come on, come on to the next hole. By the eighteenth hole (I still can’t believe we made it!), he was actually enjoying himself.
Onto the go-karts, and this year Thomas was actually ready to try them! He rode with me in a little two-seater kart and Hayley rode with Jonathan. Thomas loved it! I was driving along, mentally patting myself on the back for helping Thomas to finally overcome this aversion to something we all knew he’d love. He was laughing very deeply in his belly. I’ve never heard him laugh like that! He had a great smile on his face and I thought for sure that we’d just have to find a go-kart track near our house. Unfortunately, Jonathan and I were very short-sighted. We didn’t think about what would come after the go-kart ride was over. Thomas did. After I pulled over at the end of our last lap, I unbuckled our seatbelts and Thomas slid over to my seat and said, “Okay. My turn!” Oh, dear. I took his hand and was able to lead him off the track without much trouble, but he was crying. He was crying very loudly by the time we got back to Jonathan and Hayley, so we picked him up and tried to soothe him. It was kind of sweet, somehow. He loved the ride, but wanted a turn to drive. Next year, maybe we’ll check out another track that said “Mini-karts for kids” on the billboard. God help me, can I actually be thinking of letting my son drive his own go-kart? Honestly, he’d probably be a better go-kart driver than I am.
Thomas recovered from the go-karting disappointment when we told him that we were going for ice-cream. When we got to the custard stand, he said, “Hey! I remember this place!” I’ll bet. I think he remembers it because there is a giant ice-cream cone on a pole outside the place. That’s memorable for an autistic five and a half year-old. A very visual child, Thomas is. Both kids fell asleep on our way back to the resort after what we felt was a largely successful evening.
Now that we’re home again, I can tell that Thomas is trying to re-adjust to being home all day. He doesn’t ask if he has school anymore. I wonder if he remembers from last year that there’s weeks and weeks without school after we get home from the vacation house. The rest of the summer stretches out to what seems like infinity. Yesterday, we visited the park. Today, we visited my mom because we had some work done on the car and she met us at the garage. Tomorrow, there’s an HVAC guy coming to check out our air-conditioning. Enthralling, I know. We’ll go swimming, re-up our zoo membership, basically the same stuff as last summer but I’ll try to keep it interesting. Somehow it always is, and the story of our lives requires no exaggeration.
Tennis, anyone?
Apr 15, 2008 by AnonymousFinally, the weather is improving! We’ve been spending a lot more time outside playing in the yard and walking to the park. Last year, it seemed like no matter how old Thomas got, I’d still be strapping him into a stroller or making him sit in the wagon to take him to the park. It’s really amazing how much things can change in what seems like no time at all.
Thomas loves to ride his little pedal car to the park. The only problem is that riding the pedal car is all he wants to do when we get there. Hayley wants to play on the slides or the swings but Thomas wants to keep on truckin’. So we go on to the next park and the next (there are three nearby that are all connected by paths) and by then Hayley has seen a flying bug and it’s all over; we have to go home immediately. We saw a very sluggish and sleepy bee on the ground at the park yesterday and Hayley flipped out. (I was rather surprised to see a live bee this time of year too, as a matter of fact.) She is suddenly quite imprisoned by her intense and irrational fear of bugs and it’s worrying me for the coming summer. I’ve tried explaining to her that bugs are important to trees and plants and that bugs live outside and we have to get along with them when we’re outside too. Not much of that is sinking in. I hope she can get over it before summer really gets going. Our family vacation will be one very long week if she doesn’t.
So Thomas pedals to the park, being careful not to get too far away from me – and I can trust him to not run away! (Or pedal away, as the case may be.) Tomorrow it’s supposed to be even warmer and I suggested tonight during baths that we go to a different park. I’ve seen some other neat-looking parks on my jogs and I hope we can try some of them. Thomas is ill-disposed, however. He said that we shouldn’t go to different playgrounds; “that wouldn’t be too much fun.”
Tomorrow is Spring Picture Day at school and I can’t wait to see the kind of picture Thomas brings home. He’s been very into having his picture taken lately. I’ve been selling a lot of old clothes on eBay as I lose weight, and every time I get the camera out to take snaps of these items, Thomas insists that I take a picture of him and then show it to him. It hit me that Thomas and Hayley will never know a time before digital cameras! They’ll never fool around with film and flashcubes (I’m only just barely old enough to remember flash cubes, I swear!) and waiting four days for film to be developed only to find out that Aunt Maude had her eyes closed in every single picture of her at Uncle Joe’s retirement party.
Which brings me to another aspect of life that our children will never remember in its original form: We located and purchased a Nintendo Wii this weekend. Jonathan and I really wanted one (Happy Mother’s Day to me; Happy Father’s day to him) not just for us but for the whole family. I like it better than the average game system because most of the time, you’re standing up making wild, gesticulating motions as you pretend to punch with fists, poke with an epee, display a blazing backhand or perfect a breaststroke. We were playing yesterday and I remember wondering what an alien would think if they were to watch us through our windows as we had what looked like severe seizures in front of the TV. Anyway, the point is that there is more physical activity and coordination required to play this Wii system. You would not believe how much my biceps hurt yesterday from that tennis game! I think those are biceps…anyway, Thomas loves it, too! He is actually really good at the tennis game and Hayley likes to play golf. Thomas laughs so hard when his little character waves the tennis racquet and admittedly, he’s only really able to volley the ball because he’s always moving and therefore his character is always swinging, but he likes it and that’s what’s important. There’s a little “Mii” section of this system where you can create the characters you play with, from the height and body type to face shape, hair color and pretty much every aspect of someone’s appearance. So we made characters for our whole family, plus the kids’ aunts, uncles, cousins and grandparents. I showed Thomas and Hayley and now they like to see who’s in the stands for tennis, who’s watching at the bowling alley and who’s on their baseball team. It’s very cute! I’m hoping that as they grow, they’ll get better-coordinated with the Wii. We bought a couple games we thought the kids would be better at, but even those were too advanced. I’m going to try to find some games that are rated “EC” for “early childhood.” Those would almost certainly be more appropriate, educational, and easy-to-play. One thing’s for sure: They’ll never remember Atari cartridges and joysticks.
Thursday or Friday, I have to go to kindergarten orientation and I feel rather unprepared. I’m not sure if they’re going to have childcare available – and I don’t know if our home school is even the one Thomas will be attending next year. If our grade school doesn’t offer an MLP class, he’s going to be bussed somewhere else. I’m going to have to call his school or our elementary school tomorrow to find out what I’m supposed to do. We’re not going to decide on Thomas’ placement until May 6, and even then we could change our minds over the summer.
We’re going to the cottage this weekend to put the pier in the water. After we were there two weeks ago, I really don’t dread it. The kids are so good up there now that this is finally the year that things get better! We’ve been waiting for it and now it’s here. Undoubtedly, God will jar me out of my reverie somehow – like I’ll get pregnant or something. (I’m not pregnant, mom. That was a joke.)
Out the door
Jun 17, 2007 by dankohnWe’re back from the vacation house, and all in one piece. Nobody got sick or injured, so I’m calling it a success. Thomas took some time to adjust once we got there, being difficult to calm down and repeatedly attempting to (sometimes successfully) escape from our little cottage on the hill. On Wednesday, he managed to free himself when my back was turned for just a moment and went streaking completely naked down the hill and across the driveway, heading for the pier. An understanding gentleman managed to catch him before he got all the way down to the water and I picked him up from there. He looked so free and alive with a gleeful smile on his face, completely unaware that it’s inappropriate (and illegal) to be outside unclothed.
Thomas really enjoyed the pools and preferred to begin his swimming day at the indoor pool. There were stairs rather than a ladder leading into that pool and Thomas loved to jump from the second stair and go underwater a bit. That was very exciting!
Towards the middle of the week, Thomas was more subdued and easier to handle. He actually napped in the middle of the day on Thursday and Friday, making it impossible to get him to go to sleep at night. On Thursday, he figured out that he could undo the chain-lock on the door by simply pulling a chair over and sliding the catch. We had to keep our ears on high alert after that for any chain-jingling sounds. Even when Thomas did get outside, he usually went straight for our car and opened and shut the doors. He is very obsessive-compulsive with all doors. The microwave, the refrigerator, the clothes-dryer – any and every door he can get his hands on, he opens and shuts it until I can’t take the noise anymore and ask him to stop. I try to redirect him but it rarely works unless the redirection involves donuts.
That aspect of Thomas’ behavior is something I’m going to address with the neurologist on Wednesday. Usually, when we’re getting ready to go on vacation and while we’re on vacation, I don’t think about anything that comes after vacation. Last week, I kept thinking about this appointment on Wednesday because I’m looking so forward to it. It’ll be just me and Thomas (my cousin will be at home with Hayley) so he will have my undivided attention. I’m very interested in forming a relationship with someone who can get to know Thomas and our family and help guide us in our endeavors. I really hope she can help us. On Tuesday, I’ll bring up the subject of going to the doctor with Thomas. Luckily, it’s going to be just a “talking” appointment; I’ll tell Thomas that Mommy just has to talk to the doctor. That usually calms him down sufficiently. As usual, it’s always better to let Thomas know what’s going on, even if it means a tantrum.
Last Wednesday while we were on vacation, the whole family went out to dinner and then played miniature golf, followed by go-karts and ice cream. We had originally decided not to do this with the rest of the family because it’s a drawn-out evening that requires sustained attention at times. We decided to try it anyway. I drew pictures for Thomas on Wednesday morning, depicting all of the fun things we’d do that evening. Jonathan and I really thought that Thomas would enjoy a ride on the go-karts this year, so I went to a gun shop and purchased noise-reduction headphones for him. We were completely prepared, or so we thought. The thing is, nothing works every single time for Thomas. The pictures usually work, but they didn’t do much this time. At dinner, Thomas wandered around the restaurant until the food came – not a disaster, but also not ideal restaurant behavior. He’s too big for a highchair and can easily get out of a booster seat. We thought he might like to try mini-golf, but it became obvious when we got to the course that he was not at all interested. My husband, the saint, followed Thomas around while I played eighteen with Hayley. She was so cute! My dad helped her make her first putt on each hole, and then she’d go either try to hit her ball towards the hole or just pick it up and put it very near the hole, then hit it in. She was very patient about waiting for her turn and she liked it when Grandpa helped her with her grip and technique. Ironically, my father made better putts when he was helping Hayley than when he was playing by himself.
Next came the go-karts. I had a bad feeling about it, since Thomas at that point didn’t want to wear his headphones and was out-of-sorts. There was a long line when we got there and Thomas decided that he just wanted to play around in our car, opening and shutting doors. Hayley rode with my dad and said she liked it when the ride was over, but she was close to tears and had spent the whole ride snuggled way down in the crook of Grandpa’s arm. She’s mentioned the go-karts again since then. Thomas, not so much. I was close to tears by the end of the go-kart stuff. Imagine being that upset that your son didn’t want to ride a stupid go-kart. I just felt like Thomas would have really liked to do it, but he couldn’t. I felt like he missed out, like I missed out watching him have fun. I was very sad about it. It’s hard because we can’t always tell when he’d like to do something. Maybe he really wanted to ride the go-karts but couldn’t settle down enough to tell us that he needed help. I wish he could tell us what he needed: a rub-down, time on the swing (which we brought with, but he almost never used), his headphones or some quiet music. We’re always guessing and we rarely guess right.
Finally, we went out for frozen custard. Thomas sat and ate pretty well, but of course, it involved frozen treats.
Wish me luck at the doctor with Thomas. I’ll write about it Wednesday night.