The countdown begins – only a few days left before Thaney starts at his new school. I have to say that my nerves haven’t been helped at all by news of a 53-pound, 9-year-old boy with autism being smothered at school by a 40-pound therapy blanket and then reading another news story about yet another young child with autism and his family being removed from an airplane.
Braeden and I were talking about this on the way home from camp today – as Thane napped in the car. When Braeden was this age, his skills were just different. If something happened at school that he didn’t think was right or that he otherwise wanted to discuss, I could trust him to talk to me . . . just as he talked with me this afternoon about his day at theater camp. With Thane, I have to rely on the adults to let me know how his day went, and for them to decide what I should or shouldn’t know. That makes it scarier for me to leave him places than it is for me to take Braeden someplace new.
Thane hasn’t wanted to go to school for about a month now. I don’t know exactly why, though he has mostly been fine once he is there. He has said he didn’t want to go to a new school, and he has been yelling at me in the car because I am taking the wrong path – the new school is in the opposite direction of the old one, so the path/road is indeed different. I decided to swing by the new school just to remind him of the outside yesterday – we were within a very short distance when we picked Braeden up from camp. He protected and complained even as I pulled in. I sat for a minute showing him the play area and telling him it would be fun.
The school is closed this week so I wasn’t expecting to see a teacher there, but she was there cleaning things up and getting ready for the summer program to start next week. She came right over to the car, asked to be introduced to the new student, introduced herself to Braeden, talked to him for a minute, then invited Thane into the studio building or out on to the playground. He chose the playground and she happily ran with him over to the climbing structure and climbed up one way as he went down another, then they slid down two side-by-side slides and Thane was pretty well smitten with her right there. They rode a teeter totter, checked out the swings, and she invited him to look at the studio even though it was messy. She teaches music so they played some instruments, checked out puzzles, beads, and games. Then she went outside with him again!
We interrupted her for at least a half hour from her cleaning work. I thanked her several times because letting him check out the space without kids there will make Monday so much easier, and she said she was happy to help and she would much rather play with him then clean anyway. I still feel kind of guilty for taking so much time, but now he is talking happily about his new school. His BCBA was here today and they had a very happy chat about school (including the “rule” to wear short sleeves and shorts in the summer because it is so warm out).
So this is another teacher who seems like she will be fun. She teaches music at the school so he will see her a bit even if he is not in her class. She had Thane smiling and she warmed him up really fast by getting into the play with him. I’ve seen the other teachers playing in the sandbox, climbing, sliding, pulling wagons, etc. The head teacher visited him at his old school last week and I was a little worried since he was hiding. I am sure he will still be somewhat overwhelmed next week, but there is going to extra support, the BCBA will be there with another child so he will stop in and say hello to Thane too. It’s not currently in our IEP to have him work with Thane at school, and it probably won’t be necessary, but it will be nice if he says hello. The social worker is usually right in the area too and plans to pop in at some point to check on him as well, so I should be able to get some feedback from known sources early on as well.
So we’re working on the summer clothing and new shoes . . . With the help of the BCBA, Thane threw out his little brown cowboy boots from See Kai Run and accepted a new pair of brown shoes. I did get him a pair of navy blue shoes from the Eleven Collection.
Showing posts with label ABA. Show all posts
Showing posts with label ABA. Show all posts
Thursday, June 26, 2008
Monday, March 31, 2008
Good Eggs
Today has been a good day . . .
Braeden went snowboarding and had fun. He came home to an Easter Basket, egg coloring, egg hunt and a nice dinner. I hear he behaved beautifully and I was thrilled that neighborhood friends wanted to take him all the way to Sugarloaf. He left at 4:45 a.m. and came home a bit after 7 p.m.
Thane was cute pretty much all day long. He and I played with Playmobil dinosaurs and had fun. He had trouble because he can't apply a script so he ended up jargoning more than I have heard in awhile, but I was impressed with his efforts and the joy he was having. It is so nice to see him happily push himself, if that makes sense. Before we changed his diet he was so unlikely to challenge himself, and certainly not do so and still enjoy himself. He is blossoming!
He was totally charming about coloring eggs, something I didn't think he would necessarily do with us. I thought Thane might ask others to do the dipping for him so he wouldn’t get wet with colored dye, but he was very happy to plunge right in. He got a couple of blue-green freckles on his face and they lasted through two or three baths.
The other problem we had was that we forgot to purchase white eggs, so we only had brown . . . and we only had a dozen to work with. Three cracked in cooking, so the two kids had to share nine eggs. No one complained! Isn’t that bliss?!? I love that my kids take such joy in little things.
I thought it was interesting that dying brown eggs resulted in mostly blue and green eggs!
We put little toys and not so much candy in the eggs for our hunt and really they were just happy to collect the eggs. Braeden was especially cute because he was helping his little brother find eggs, even though Thane tried to nab each egg Braeden collected. In the end, they gathered them all together in one pile and shared the contents rather appropriately. Thane got some tiny stuffed animals that were squished into some eggs and Braeden got some other toys. It worked well. If only all holidays could go so easily and happily!
The icing on the cake, Thane tried ham for dinner. He didn't have to be pushed to touch it, or feed a piece to me, and then he actually was willing to eat more. He ate 10 small pieces, probably close to a square inch of a slice of spiral ham all total. Perfect! One can't get much better than that for a sampling session. No fuss! Yay Thane!!!
Thane has tried ham a few times without really opting to eat much, but not fighting it either. He has worked on chicken as well, but again he is willing to eat a few bites and then he wants his stand-by foods. He actually requested the chicken once, though he didn’t eat much of it. It has taken a few months to get to sampling, so I guess it probably stands to reason that this part goes a bit slowly too. At least a major part of the stress is gone.
Life is good!
Braeden went snowboarding and had fun. He came home to an Easter Basket, egg coloring, egg hunt and a nice dinner. I hear he behaved beautifully and I was thrilled that neighborhood friends wanted to take him all the way to Sugarloaf. He left at 4:45 a.m. and came home a bit after 7 p.m.
Thane was cute pretty much all day long. He and I played with Playmobil dinosaurs and had fun. He had trouble because he can't apply a script so he ended up jargoning more than I have heard in awhile, but I was impressed with his efforts and the joy he was having. It is so nice to see him happily push himself, if that makes sense. Before we changed his diet he was so unlikely to challenge himself, and certainly not do so and still enjoy himself. He is blossoming!
He was totally charming about coloring eggs, something I didn't think he would necessarily do with us. I thought Thane might ask others to do the dipping for him so he wouldn’t get wet with colored dye, but he was very happy to plunge right in. He got a couple of blue-green freckles on his face and they lasted through two or three baths.
The other problem we had was that we forgot to purchase white eggs, so we only had brown . . . and we only had a dozen to work with. Three cracked in cooking, so the two kids had to share nine eggs. No one complained! Isn’t that bliss?!? I love that my kids take such joy in little things.
I thought it was interesting that dying brown eggs resulted in mostly blue and green eggs!
We put little toys and not so much candy in the eggs for our hunt and really they were just happy to collect the eggs. Braeden was especially cute because he was helping his little brother find eggs, even though Thane tried to nab each egg Braeden collected. In the end, they gathered them all together in one pile and shared the contents rather appropriately. Thane got some tiny stuffed animals that were squished into some eggs and Braeden got some other toys. It worked well. If only all holidays could go so easily and happily!
The icing on the cake, Thane tried ham for dinner. He didn't have to be pushed to touch it, or feed a piece to me, and then he actually was willing to eat more. He ate 10 small pieces, probably close to a square inch of a slice of spiral ham all total. Perfect! One can't get much better than that for a sampling session. No fuss! Yay Thane!!!
Thane has tried ham a few times without really opting to eat much, but not fighting it either. He has worked on chicken as well, but again he is willing to eat a few bites and then he wants his stand-by foods. He actually requested the chicken once, though he didn’t eat much of it. It has taken a few months to get to sampling, so I guess it probably stands to reason that this part goes a bit slowly too. At least a major part of the stress is gone.
Life is good!
Thursday, March 20, 2008
Mealtime Therapy and Food Sampling
For ages I have been meaning to reply to Melissa’s comment on the mealtime therapy we have been doing with Thane. The problem we have run into is that he has been very self-limiting in what he eats and his first response has been to push things away or throw them, unless they were things he requested. Of course, he was apt to ask for popcorn, cookies or popsicles!
When we asked for help getting him to try new foods, we weren’t really expecting the whole finish everything on your plate thing, or even having to have all meals and snacks at the table. We’re not that regimented around here, though we could see something positive about the process especially because of weight issues in the house.
It was so time-consuming: preparing things, all the separate dishes, sitting until he finished cooperatively, etc. Some days, it was too much. I noticed a pattern for myself where by Wednesday evening I was just done with it all. I was tired of driving around, getting stuck at the table, and having what didn’t feel like a lot of fun with Thane. It was work. It was stress. Even if it went well it just wasn’t natural.
Thane is a visual learner, which I think is part of what the behavioral therapist was looking at when making the plan. Thane also likes predictability . . . though he also wants to control his world. It was clear that he appreciated lunch right after getting home from school – it was his best meal of the day. Afternoon snack went pretty well, but dinner, when I truly wanted the whole family together, was usually pretty awful. The tension spilled over to everyone, and being tired we were all less able to deal with it.
The goal was to get Thane used to finishing his plate of food and drink – even if that was one bite and one sip. That way when we move to sampling, it’s predictable. If you finish that one pea-size bite on your plate, you’re done. You don’t have to eat more than that, but you do need to try it.
I thought long and hard about what Melissa said – is it worth it? Should we let go? It’s not like he is still failure to thrive. This is where ABA and I don’t mix well. I believe in positive parenting and punishing is very uncomfortable to me. Forcing Thane to sit at the table five times a day seemed like punishment because he didn’t want to do it. The only good part was no half-eaten grapes stuck to the furniture in the living room!
The therapist has always been clear that his job is to work with our family – not to tell us what to do . . . he gives us a plan and we decide if it is comfortable. What I realized is that I wasn’t fully honest with him, or I wasn’t realizing that I wouldn’t like it until I got into the treatment. I can be very agreeable at first and then start over-thinking everything afterward.
What we decided was that we did need to back off . . . not back off on the goal of sampling new foods, but back off on the regimented eating plan. We reduced to meals at the table and snacks could be eaten elsewhere without having to finish everything. It was easier on all of us. Thane was even choosing to come to the table and ask for meals and such.
On Monday, we learned how to do the sampling and it went pretty well. We’re going to try a rotation of a few different foods to sample. My problem is that in the process I worry about allergies rearing up again. We’ve had so much trouble with him being ill this winter and he seems like when his body is fighting allergies he’s more likely to get sick. This week may be the first time he gets to school each day since November.
I got paperwork in for a different preschool starting in summer – Thane’s ESY calls for 5 days per week over the summer, pretty much the same services we have during the school year. I also got all our paperwork in for Freedom Riders, so hopefully we’ll get a spot and start that in May. I am very excited about that.
Thursday, February 21, 2008
ABA and Lunch
When applied behavior analysis was suggested for Thane, my knee-jerk reaction was no way. Part of that stems from my brother and knowing that ABA, regardless of what the experts say, makes a lot of use of negative feedback or aversives. This is not my style nor Dave's.
There are many things that simply have not been worth the fight to me . . . meaning that I haven't really wanted to push him to the point of unhappiness about any behavior. That doesn't mean I don't react to him throwing toys or something (the toys get a time out away from him until he is calm), or that I think every minute of his life will be shear happiness, but I don't want to create conflict where there doesn't need to be any. Who cares if he doesn't wear clothing at home? Who cares if he lines up his cars? It's all about picking battles . . .
I also completely understand that there is no such thing as a perfect parent. We do the best thing we can think of at the moment, hind-sight makes us question our choices, and how we react in the future evolves from what has worked and what hasn't.
Thane had gotten very difficult about eating meals, or eating much variety. It wouldn't matter much to me if his choices were pretty well-rounded, and if he didn't expect to eat half grapes and stick them to the furniture. He can eat a half grape if he puts the rest in a discard bowl, but the floor and furniture was just too icky. We want him to try new foods. I know this hardly seems like a crime, but he is 4 years and 2 months and has never even let a piece of pasta into his mouth. I am sure he would like it with some toppings that he enjoys, like tomato sauce, but he won't let it past his lips.
We gave the ABA guy a try because we were getting nowhere with potty training. Then he basically got the concept in a day, no pee accidents within a week, off the timer in less than a week, etc. So it worked. The first day was awful, then it turned easy.
So we decided to address the wanting Thane to eat at the table and actually finish a meal rather than eat two grapes and cry for more food in a half hour. We wanted him to eat more foods and not always be a separate meal. I wanted him to try some of the products of our efforts to make some pretty darn tasty gluten free, egg free foods (he does have dairy and some soy again). We have allergies to work around too.
The therapist suggested first a plan for eating at the table, finishing the food on his plate (which Dave is really uncomfortable with since both of us parents have a weight problem and Braeden is gaining too fast). This plan has taken as much as 5-6 hours a day to implement. It got easier for a bit, but then fell apart because of parental failure. We were sick of it!
We tried again and we had lunch with the therapist on Wednesday. It was horrible. He didn't think so, but I really felt like I was torturing my son to get him to eat a bite of waffle. I had to physically keep him in his chair. I didn't do anything that would hurt him physically; in fact, I was doing all I could to prevent him from hurting himself. I found myself thinking that maybe I should just let him live on waffles, apples, grapes and cheese after all. Maybe he doesn't need to sit with us or finish a meal on anyone else's schedule. But how will that work if he goes to school? Gets a job? And we do have the added complication that he really cannot have gluten. Gluten damages the insides. It makes him very sick for the short term, clumsy, he has trouble speaking, etc. He does need to have some guidance around food issues.
I was told I did well. I stayed calm. OK, maybe on the outside, but inside I was yelling I want to stop. NOW! So where does one go with this. Physically he is OK. Emotionally he still loves mom and hangs out with me (the webcam videos were a few hours after our ordeal). I don't want to do this anymore, even if yesterday was totally rare. It still happened and it was more than I can handle. I felt so mean. I love my kids to pieces and I know I have to correct them here and there, but this is different to me somehow. Like I am turning something small into a battle.
I'm glad he and I had so much fun later on (and Braeden too, he was laughing really hard while watching Thane watch the videos, because he says "Hi!" to them constantly). I hope I don't have any more days that make me doubt my decision to try this therapy. It's hard because eating a meal is not punishment (and a meal can be one bite) to most of us, but I guess Thane disagrees.
There are many things that simply have not been worth the fight to me . . . meaning that I haven't really wanted to push him to the point of unhappiness about any behavior. That doesn't mean I don't react to him throwing toys or something (the toys get a time out away from him until he is calm), or that I think every minute of his life will be shear happiness, but I don't want to create conflict where there doesn't need to be any. Who cares if he doesn't wear clothing at home? Who cares if he lines up his cars? It's all about picking battles . . .
I also completely understand that there is no such thing as a perfect parent. We do the best thing we can think of at the moment, hind-sight makes us question our choices, and how we react in the future evolves from what has worked and what hasn't.
Thane had gotten very difficult about eating meals, or eating much variety. It wouldn't matter much to me if his choices were pretty well-rounded, and if he didn't expect to eat half grapes and stick them to the furniture. He can eat a half grape if he puts the rest in a discard bowl, but the floor and furniture was just too icky. We want him to try new foods. I know this hardly seems like a crime, but he is 4 years and 2 months and has never even let a piece of pasta into his mouth. I am sure he would like it with some toppings that he enjoys, like tomato sauce, but he won't let it past his lips.
We gave the ABA guy a try because we were getting nowhere with potty training. Then he basically got the concept in a day, no pee accidents within a week, off the timer in less than a week, etc. So it worked. The first day was awful, then it turned easy.
So we decided to address the wanting Thane to eat at the table and actually finish a meal rather than eat two grapes and cry for more food in a half hour. We wanted him to eat more foods and not always be a separate meal. I wanted him to try some of the products of our efforts to make some pretty darn tasty gluten free, egg free foods (he does have dairy and some soy again). We have allergies to work around too.
The therapist suggested first a plan for eating at the table, finishing the food on his plate (which Dave is really uncomfortable with since both of us parents have a weight problem and Braeden is gaining too fast). This plan has taken as much as 5-6 hours a day to implement. It got easier for a bit, but then fell apart because of parental failure. We were sick of it!
We tried again and we had lunch with the therapist on Wednesday. It was horrible. He didn't think so, but I really felt like I was torturing my son to get him to eat a bite of waffle. I had to physically keep him in his chair. I didn't do anything that would hurt him physically; in fact, I was doing all I could to prevent him from hurting himself. I found myself thinking that maybe I should just let him live on waffles, apples, grapes and cheese after all. Maybe he doesn't need to sit with us or finish a meal on anyone else's schedule. But how will that work if he goes to school? Gets a job? And we do have the added complication that he really cannot have gluten. Gluten damages the insides. It makes him very sick for the short term, clumsy, he has trouble speaking, etc. He does need to have some guidance around food issues.
I was told I did well. I stayed calm. OK, maybe on the outside, but inside I was yelling I want to stop. NOW! So where does one go with this. Physically he is OK. Emotionally he still loves mom and hangs out with me (the webcam videos were a few hours after our ordeal). I don't want to do this anymore, even if yesterday was totally rare. It still happened and it was more than I can handle. I felt so mean. I love my kids to pieces and I know I have to correct them here and there, but this is different to me somehow. Like I am turning something small into a battle.
I'm glad he and I had so much fun later on (and Braeden too, he was laughing really hard while watching Thane watch the videos, because he says "Hi!" to them constantly). I hope I don't have any more days that make me doubt my decision to try this therapy. It's hard because eating a meal is not punishment (and a meal can be one bite) to most of us, but I guess Thane disagrees.
Sunday, January 27, 2008
Crafty
I'm sure anyone who checks here is infinitely curious about how I spend my spare time. Lately I have been beading things.
I find some humor in today's project . . . I made this clip and tacked it on to the window frame near where I sit at the kitchen table. Not shown in the photo is that I have clipped Thane's meal session chart to the bottom of it. Hopefully this will save the chart from future food wars, but you never know with Thane!
I also made a long memo holder for near the door. I guess it would look better if it wasn't on unfinished sheetrock, but honestly there are some things that bother me about it anyway and I have to resist re-stringing it.
I am going to do some work with sea glass, possibly something to donate for Braeden's school's auction in May. I don't tend to have a ton to offer for that kind of thing, so this may be worth a try. I've also imported some beads from Hong Kong and from the Czech Republic to use in some elaborate ceiling bead-art. I suppose I should take a photo of my office ceiling and my kitchen as well. My favorite in the kitchen right now is that we have three glass star lanterns. Thane likes to count them . . . una, dos, tres, waffle, cinco!
I find some humor in today's project . . . I made this clip and tacked it on to the window frame near where I sit at the kitchen table. Not shown in the photo is that I have clipped Thane's meal session chart to the bottom of it. Hopefully this will save the chart from future food wars, but you never know with Thane!
I also made a long memo holder for near the door. I guess it would look better if it wasn't on unfinished sheetrock, but honestly there are some things that bother me about it anyway and I have to resist re-stringing it.
I am going to do some work with sea glass, possibly something to donate for Braeden's school's auction in May. I don't tend to have a ton to offer for that kind of thing, so this may be worth a try. I've also imported some beads from Hong Kong and from the Czech Republic to use in some elaborate ceiling bead-art. I suppose I should take a photo of my office ceiling and my kitchen as well. My favorite in the kitchen right now is that we have three glass star lanterns. Thane likes to count them . . . una, dos, tres, waffle, cinco!
Friday, January 04, 2008
Can’t Have Nice
Thane woke up earlier this morning earlier than he had been – which is a good thing considering he should have been at school and I am just taking off until Monday because Braeden is off until then. He gave me fits about getting dressed. He threw something at me, which made me jump funny, and made my lower back hurt on the left side. Gee, thanks! I really needed that.
He got mad and started to do the whole “I mad! I stomp!” routine, which is at least very funny if not useful. But it was going to include a door slam, so I reminded him he needed to be nice to the door. “I CAN’T HAVE NICE!!!!!!!” SLAM! So, I wait it out. He stomps around for a good 10 minutes repeating that “I can’t have nice!” and “No way!” I tackle him and get his shirt on, walk off, and start making breakfast for everyone.
It’s time for our lovely morning behavioral therapy session – otherwise known as eating in most households, but this is totally unnatural so the therapist calls it sessions. As I get things on the table, the oil truck shows up. Just what I needed was to be undressed, serving breakfast at 10 a.m., and to have the oil guy show. I said to Braeden that we’d just hide and let him leave the bill – another $500 down the drain (then it was “only” $298, but I think he came a week early just to get my goat).
”I can’t have breakfast!” Nope, sorry, you will eat, I lift him with my aching back and put him in his chair. I guard against food tossing and drink spilling until we reach our goal, though with an X for lack of compliance. I failed too as I realized as I was doing it that I didn’t fully “prompt” right or “prompt fade” correctly. Luckily there is no score sheet for mommy, but she still knows she blew it.
I took a shower and did some chores and then went to have snack a little early since I need to condense meals a bit because breakfast was supposed to happen before 9. That goes OK . . . he didn’t finish, but what he had chosen wasn’t something he typically finishes (which is a whole other issue, I mean the child eats half a grape, just the puffy part of the popcorn, no crust but won’t touch it if it is crustless, etc., etc.)
Lightning McQueen was missing – he was thrown into the ravine behind the couch (a sectional that is bolted together). We use a “magic stick” to retrieve it. Then he gets mean and tosses it at Braeden who is reading a book in the kitchen. Braeden takes it and says he will return it when Thane apologizes. “I NO HAVE SORRY!” After he extracts an adequate apology from Thane, Braeden tells him he needs to be nice. Oy, not again . . . apparently the wrong choice of words . . . “I CAN’T HAVE NICE!!!!!!” and he wings Lightning as hard as he can at the glass-top range that is still pretty new. I haven’t really had the nerve yet to check for damage. Lightning just missed the fairly new stainless dishwasher after hitting the stove. Thane ran around to the other side of the kitchen island to grab the car and was looking like he was going to try again, I grabbed his hands, took Lightning and put him in an activity time out. Thane started screaming so hard that Braeden and I just watched him turn red and then purple. He screamed a good 10 minutes (length of timeout for throwing a toy).
I think Braeden is trying to make sure Mommy doesn’t get too stressed as he is old enough to know she doesn’t always recover well from morning terrors, so he is playing with little bro upstairs – they are making a fort, reading books, and have been up there for a half hour.
He got mad and started to do the whole “I mad! I stomp!” routine, which is at least very funny if not useful. But it was going to include a door slam, so I reminded him he needed to be nice to the door. “I CAN’T HAVE NICE!!!!!!!” SLAM! So, I wait it out. He stomps around for a good 10 minutes repeating that “I can’t have nice!” and “No way!” I tackle him and get his shirt on, walk off, and start making breakfast for everyone.
It’s time for our lovely morning behavioral therapy session – otherwise known as eating in most households, but this is totally unnatural so the therapist calls it sessions. As I get things on the table, the oil truck shows up. Just what I needed was to be undressed, serving breakfast at 10 a.m., and to have the oil guy show. I said to Braeden that we’d just hide and let him leave the bill – another $500 down the drain (then it was “only” $298, but I think he came a week early just to get my goat).
”I can’t have breakfast!” Nope, sorry, you will eat, I lift him with my aching back and put him in his chair. I guard against food tossing and drink spilling until we reach our goal, though with an X for lack of compliance. I failed too as I realized as I was doing it that I didn’t fully “prompt” right or “prompt fade” correctly. Luckily there is no score sheet for mommy, but she still knows she blew it.
I took a shower and did some chores and then went to have snack a little early since I need to condense meals a bit because breakfast was supposed to happen before 9. That goes OK . . . he didn’t finish, but what he had chosen wasn’t something he typically finishes (which is a whole other issue, I mean the child eats half a grape, just the puffy part of the popcorn, no crust but won’t touch it if it is crustless, etc., etc.)
Lightning McQueen was missing – he was thrown into the ravine behind the couch (a sectional that is bolted together). We use a “magic stick” to retrieve it. Then he gets mean and tosses it at Braeden who is reading a book in the kitchen. Braeden takes it and says he will return it when Thane apologizes. “I NO HAVE SORRY!” After he extracts an adequate apology from Thane, Braeden tells him he needs to be nice. Oy, not again . . . apparently the wrong choice of words . . . “I CAN’T HAVE NICE!!!!!!” and he wings Lightning as hard as he can at the glass-top range that is still pretty new. I haven’t really had the nerve yet to check for damage. Lightning just missed the fairly new stainless dishwasher after hitting the stove. Thane ran around to the other side of the kitchen island to grab the car and was looking like he was going to try again, I grabbed his hands, took Lightning and put him in an activity time out. Thane started screaming so hard that Braeden and I just watched him turn red and then purple. He screamed a good 10 minutes (length of timeout for throwing a toy).
I think Braeden is trying to make sure Mommy doesn’t get too stressed as he is old enough to know she doesn’t always recover well from morning terrors, so he is playing with little bro upstairs – they are making a fort, reading books, and have been up there for a half hour.
Friday, August 17, 2007
The Long & Winding Road
This was not a banner week . . . I wish I was enjoying having both children home, but I simply cannot say that I am. I think it is because I don’t get any time off – even bathroom visits are rarely un-interrupted.
Monday was the worst. I’m still not feeling very chatty about it, but Thane decided to remind me in the worst possible way that he can’t be trusted. I think what is bothering me more than the fact that he could have died is that I tried to stop him and he gave me that look from when he was first walking – the absolutely beautiful smile over the shoulder followed by total reckless defiance. I am still very sore from trying to rescue him. And I think it hit home in a way that is hard to explain. This is where autism sucks – I know I shouldn’t say things like that, but the truth is that it does. How am I ever going to trust this unpredictable child, and if I make the mistake again, will it work itself out the way this event did?
Afterward I really just felt like I wanted a break. I have wanted one all week. But the reality is that I don’t trust a lot of people with my children, especially Thane. I trust his teachers, but the one day I took him to school this week, I ended up talking to his case manager and then having my car battery die in a parking lot because Braeden had the DVD player on when the car wasn’t running. I was supposed to go to the doctor, but apparently the case manager forgot that I said no . . . and I don’t do well and dismissing the person in front of me.
Of all the people we deal with, the case manager is probably the one I like the least. I think she sees the glass half empty with Thane, maybe totally empty. She always talks about “children with his diagnosis” as opposed to him . . . drives me batty! The therapists and such all seem to have different ideas. It appears that we have our choice of a preschool that is completely children with disabilities – most with speech problems – or possible a couple of places that seem rather like we’d be slumming. I know that sounds awful, but Head Start looks better than these facilities, yet we can’t get into Head Start because we’re over income. The private places either won’t take a child with his diagnosis, or want him to have a one-on-one. I guess I can see him needing a one-on-one, but a good one of those can be hard to find too.
He’s technically two years away from Kindergarten. We are also highly unlikely to even consider public school for him. I don’t tend to “believe in them” for boys to begin with, but add special needs and I really dislike the idea.
It looks like we’ll do five mornings a week at the developmental preschool. He will have occupational and speech therapies there as well, sometimes one-on-one before starting the school day.
Then there is the problem with getting him access to typically developing children. It’s been exactly a year since his diagnosis and the team of evaluators was clear that there should be access to typical peers. I have been asking, trying, etc., with no luck. Activities like the park and story hour just don’t cut it. Many parents also don’t want to “subject their child” to someone like Thane. After all, he might hurt their feelings by refusing to play. I understand on some level, but it does make it hard to find that interaction!
We’ve tried gymnastics and the class gets cancelled. Swimming was suggested. I may consider that – there is a coach-therapist at a country club near Braeden’s school. It needs to be private lessons, though, for his safety and because his immune issues might make him miss more lessons than he can attend (we were out of school on Wednesday with spots and green poop, and out today because of a bloody nose). A creative movement class with his home developmental therapist was suggested by the school DT, but I just don’t think he can abstract and make himself a tree. In fact, I was just noting that the more things change, the more they stay the same on some level. Now that he knows his name is Thane, for example, we can’t call him anything else. I call him peanut, like in that little YouTube video posted earlier this month, and he corrects me. The dog is no longer a dog (with a Brooklyn accent), she’s a Misty. I know all small children are rather concrete, but he seems more rigidly so than most.
I guess we’re looking at trying a low-rent preschool for one or two afternoons a week. I will have to further investigate the worth in doing something like this. I’m shocked that these places seem to be located near cement plants, concrete batch mixers, pavement companies, town wastewater plants, and places that just seem way too toxic for a child who doesn’t detox things well! Maybe the next one I find will be in the same building as a bakery so he could be glutened daily too.
Oh, I can’t forget this in my long ramble here that one of the schools the case manager suggested actually straps children into chairs until they finish a task. The DT told me that they strap the kids around the middle and strap their legs, and then have them sit in that chair until they have made five worms out of Play Doh. She thought it would totally break his spirit and was inappropriate for him. I wish sometimes that the therapists and case manager would discuss these things before bringing them to me as anyone who knows us even slightly would realize we’d never strap our child into a chair, much less force him to touch Play Doh. It has taken over a year for him to bring himself to do anything with gluten-free dough. Early on the sight of it made him vomit. Even though he can do it now, I would never force something that is so unimportant in my mind.
I found out yesterday that the speech therapist isn’t going to be giving therapy at the preschool anymore – it is going to be an education technician who will work under the SLP. I can’t decide if this is good or bad. Thane gets more of his speech success from home. His SLP doesn’t work on the motor-planning issues. Maybe the ed tech would concentrate more on that?
Monday was the worst. I’m still not feeling very chatty about it, but Thane decided to remind me in the worst possible way that he can’t be trusted. I think what is bothering me more than the fact that he could have died is that I tried to stop him and he gave me that look from when he was first walking – the absolutely beautiful smile over the shoulder followed by total reckless defiance. I am still very sore from trying to rescue him. And I think it hit home in a way that is hard to explain. This is where autism sucks – I know I shouldn’t say things like that, but the truth is that it does. How am I ever going to trust this unpredictable child, and if I make the mistake again, will it work itself out the way this event did?
Afterward I really just felt like I wanted a break. I have wanted one all week. But the reality is that I don’t trust a lot of people with my children, especially Thane. I trust his teachers, but the one day I took him to school this week, I ended up talking to his case manager and then having my car battery die in a parking lot because Braeden had the DVD player on when the car wasn’t running. I was supposed to go to the doctor, but apparently the case manager forgot that I said no . . . and I don’t do well and dismissing the person in front of me.
Of all the people we deal with, the case manager is probably the one I like the least. I think she sees the glass half empty with Thane, maybe totally empty. She always talks about “children with his diagnosis” as opposed to him . . . drives me batty! The therapists and such all seem to have different ideas. It appears that we have our choice of a preschool that is completely children with disabilities – most with speech problems – or possible a couple of places that seem rather like we’d be slumming. I know that sounds awful, but Head Start looks better than these facilities, yet we can’t get into Head Start because we’re over income. The private places either won’t take a child with his diagnosis, or want him to have a one-on-one. I guess I can see him needing a one-on-one, but a good one of those can be hard to find too.
He’s technically two years away from Kindergarten. We are also highly unlikely to even consider public school for him. I don’t tend to “believe in them” for boys to begin with, but add special needs and I really dislike the idea.
It looks like we’ll do five mornings a week at the developmental preschool. He will have occupational and speech therapies there as well, sometimes one-on-one before starting the school day.
Then there is the problem with getting him access to typically developing children. It’s been exactly a year since his diagnosis and the team of evaluators was clear that there should be access to typical peers. I have been asking, trying, etc., with no luck. Activities like the park and story hour just don’t cut it. Many parents also don’t want to “subject their child” to someone like Thane. After all, he might hurt their feelings by refusing to play. I understand on some level, but it does make it hard to find that interaction!
We’ve tried gymnastics and the class gets cancelled. Swimming was suggested. I may consider that – there is a coach-therapist at a country club near Braeden’s school. It needs to be private lessons, though, for his safety and because his immune issues might make him miss more lessons than he can attend (we were out of school on Wednesday with spots and green poop, and out today because of a bloody nose). A creative movement class with his home developmental therapist was suggested by the school DT, but I just don’t think he can abstract and make himself a tree. In fact, I was just noting that the more things change, the more they stay the same on some level. Now that he knows his name is Thane, for example, we can’t call him anything else. I call him peanut, like in that little YouTube video posted earlier this month, and he corrects me. The dog is no longer a dog (with a Brooklyn accent), she’s a Misty. I know all small children are rather concrete, but he seems more rigidly so than most.
I guess we’re looking at trying a low-rent preschool for one or two afternoons a week. I will have to further investigate the worth in doing something like this. I’m shocked that these places seem to be located near cement plants, concrete batch mixers, pavement companies, town wastewater plants, and places that just seem way too toxic for a child who doesn’t detox things well! Maybe the next one I find will be in the same building as a bakery so he could be glutened daily too.
Oh, I can’t forget this in my long ramble here that one of the schools the case manager suggested actually straps children into chairs until they finish a task. The DT told me that they strap the kids around the middle and strap their legs, and then have them sit in that chair until they have made five worms out of Play Doh. She thought it would totally break his spirit and was inappropriate for him. I wish sometimes that the therapists and case manager would discuss these things before bringing them to me as anyone who knows us even slightly would realize we’d never strap our child into a chair, much less force him to touch Play Doh. It has taken over a year for him to bring himself to do anything with gluten-free dough. Early on the sight of it made him vomit. Even though he can do it now, I would never force something that is so unimportant in my mind.
I found out yesterday that the speech therapist isn’t going to be giving therapy at the preschool anymore – it is going to be an education technician who will work under the SLP. I can’t decide if this is good or bad. Thane gets more of his speech success from home. His SLP doesn’t work on the motor-planning issues. Maybe the ed tech would concentrate more on that?
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