Another happy Nikko came back from preschool today, happy. The notes were positive, saying he ate popcorn in snack and was consistently moving the popcorn pic to his picture schedule binder at school. After lunch I put in the Time to Eat DVD. He seemed interested in it at first because there were new songs and a different layout. I gave him the 2nd DVD to look at and he ended up carrying it around the living room for most of the afternoon. Sometimes Nikko signs Cookie to me while looking down, then I see his eyes glance up at me warily knowing that he's not supposed to have a cookie but hopes that I will give him one anyway. It rarely works since he's signing for a cookie during lunch. Or dinner. Sorry buddy, only during snack time.
Later in the afternoon, the boys found some plastic balls from the ball tent and were throwing them up in the air. Audrey was by the mirror wall and I was by the DVD player. Suddenly something hit me on the right side of the head, something slightly heavy, and landed on the floor. I looked down as the pain suddenly jolted into my head and I saw the green Chick Hicks matchbox car on the ground. Nikko had picked it up and thrown it up into the air like the plastic ball. It HURT and I immediately started to cry as I held my head. Nikko saw me and ran to the window, crouching behind the ottoman but then started watching TV. Ronin came up to me saying, "Mommy? Mommy?" I was horrified that Audrey was sitting so close by and could have been the one pegged in the head by a metal car. I marched over to Nikko, cornered him and told him he hit mommy in the head, it HURT, and say SORRY. Nikko wouldn't look at me, purposely avoided my eyes even when I held his chin in my hand. I gave up and sat there crying harder because Nikko had no idea what he did and didn't care. I went to the kitchen for an ice pack and Ronin followed me, "Mommy? Mommy? Mommy sad. Mommy crying." I let Ronin comfort me, but even now the lump on my head is tender.
Nikko didn't pick up any signs today, but he did manage to drag me over to the DVD player and sign that he wanted the Signing Time dvd. I prompted him a little, but his intention was clear to me. During a tickle game I had him sign More if he wanted me to continue. I'd like our communication to go beyond the kitchen and food.
Audrey was a trooper today. From the morning after breakfast, she was trying to toddle around on two feet a lot. She'd take 4-5 steps and then falter. She'd look to me for praise, and then clap her hands when she saw approval. So cute!
Friday, October 9, 2009
Thursday, October 8, 2009
Improved signing, and The Future
Yesterday Nikko seemed to have a good day at school. He did OT stuff using the swing and scooter board. Mrs. I said she's trying to get him to stay with these activities longer. After lunch we headed to the McDonald's Playplace to meet up with Anna, Jovy and Max for some fun. Nikko seemed to have fun running around at first, but later he opted to look out the window and run a car along the window sill. When we left, I decided to take a risk and run to Costco for a chicken nugget refill, milk and other little stuff. Ronin had fallen asleep in the car and was completely knocked out in the cart for the first time ever. He usually wakes up when transported, but since he missed his 2pm nap I think he was really tired. I let Nikko walk next to the cart in the store and he did fairly well, but started pausing when he came upon a seam in the concrete floor, put his two feet together, and then stepped over the line quickly. The weather was blah so it didn't feel inviting to be out.
Today Nikko had a good 1:1 session with Ms. Winters.
...We went around building waving "hi" to office folks. He was doing a great job with high fives! He was doing pretty consistent choice pointing to pix for choice of 2 bus/bubble/cracker. I was also getting "mmm" for cracker. I was telling Three Bears story at group lang. with voices and huge drama and he spontaneously signed "cry" several times during story when baby bear was sad (I was not using the sign then but we did it a lot last week when theme was emotions!).
For the past few days I've been signing "sleep" for sleepy with him and he gets it. Yesterday I was signing happy, and during lunch today I was signing about being sad/cry and happy/smile, all before reading about his progress report. Nikko must be paying attention to how people are reacting/feeling. My next two Signing Time DVDs came via UPS today, My Day and Time to Eat. I'm excited to start using them, so I'll play it tomorrow after lunch to see if he's interested in them. They have more words that are relevant to our day-to-day, even though the DVDs are out of order in the series.
Denis and I have been talking further about how to handle the whole ABA situation. It helped that I listened to a message that Kathy Winters left on the machine yesterday, saying that there's a lady named Linda Heck who works for the school's autism group. She's going to observe Nikko on the 20th of October and then will talk to us about her findings. I'm very curious to hear what she thinks, if ABA would be a good option for him, and how we could possibly go about getting it. I wonder if we could do ABA through the school, or if we'd have to go to a private service, and then wonder how we'd pay for it. I've really got to take advantage of Nikko during these preschool years, especially while he's working with these two teachers who seem to know what they are doing, are sensitive to Nikko in this mixed class environment, and especially since Kathy is a speech therapist. Also, these teachers seem to really CARE about Nikko and his development, and seem to be working with him to reach his IEP goals. I have NO idea if any teacher in Nikko's future will work as hard for Nikko as Kathy and Margie are. I have no idea if Nikko will be able to go to Kindergarten after the preschool years. What if he has to go to a special school? Can he possibly be mainstreamed into Fairview? With an aide? So many unknowns here. Finally, I am seriously toying with the idea of doing home-based therapy with him, with me as his facilitator. I am hesitant because Ronin and Audrey are here in the mix, are so young and demanding of my attention more than Nikko is. I don't know if I will be able to do 1:1 therapy with Nikko without the babies. Maybe I should look into having Chinny come over again, perhaps in the spring or maybe even in the summer months when Nikko doesn't have school, to play with Ronin and Audrey while I do some intensive therapy sessions with Nikko. I am not a trained therapist, by any means. But I like to read, and I have had to read lots of things about autism and every other topic useful to run this household including eating right, child rearing, and all Ronin's allergies. One big thing I am so worried about, and the thing that keeps me from believing that I am qualified to take on this huge role, is that I am not patient enough. It sounds trite. But all the therapists have a deep well of patience with their clients, are able not to take rejections personally and are able to keep moving forward despite slow progress. Lately, Ronin seems to push my buttons all in the wrong direction and I am constantly harping on his whining. It's not healthy, and I don't feel good about it. If I can't keep my cool with Ronin, who is only 2, how can I possibly keep my cool with Nikko? This is my daily struggle, my daily cross to bear. Some days I'm in a great mood and there's no yelling to be had anywhere. But yesterday I was so annoyed at Ronin that everything he did was setting me off. Today I was so fed up with the fighting between the boys, the pushing and the whining and the unfair taking of each other's toys that I'm sure I screamed my anger more than once. Nikko even covered his ears a few times while I was walking around in a rant. I'm not proud of it. And even more so, how am I going to calm myself if I have to become a sit-down teacher with Nikko? Don't recommend yoga or pilates. I hardly have any time after the kids go to bed to be blogging, and I have to delete a show on the DVR because I just won't have time to sit for a whole hour to concentrate on a complicated storyline. I've actually looked up online how to have more patience, and have not found anything satisfying. Go to another room and close the door? Yeah, and when I open it all three kids will be screaming, pounding away at the door, tears and spit all over their faces because I separated from them for a minute of "peace". Scream into a pillow? Done that. Doesn't help to unleash my anger. Pound the wall? Sure, but not good for the furniture. Count to 10? Works sometimes, but not when the anxious bubble has beat me to the top. *SIGH* Well, I've got to stop blogging so I can get in five minutes of reading an autism book. I've even stopped my subscription to Real Simple, my favorite magazine, because I can't keep up with the issues that are coming. I will just read the articles I've ripped out of past issues, read up to the ones I got before discontinuing, and not subscribe to anything else. No time to read a magazine. :(
Today Nikko had a good 1:1 session with Ms. Winters.
...We went around building waving "hi" to office folks. He was doing a great job with high fives! He was doing pretty consistent choice pointing to pix for choice of 2 bus/bubble/cracker. I was also getting "mmm" for cracker. I was telling Three Bears story at group lang. with voices and huge drama and he spontaneously signed "cry" several times during story when baby bear was sad (I was not using the sign then but we did it a lot last week when theme was emotions!).
For the past few days I've been signing "sleep" for sleepy with him and he gets it. Yesterday I was signing happy, and during lunch today I was signing about being sad/cry and happy/smile, all before reading about his progress report. Nikko must be paying attention to how people are reacting/feeling. My next two Signing Time DVDs came via UPS today, My Day and Time to Eat. I'm excited to start using them, so I'll play it tomorrow after lunch to see if he's interested in them. They have more words that are relevant to our day-to-day, even though the DVDs are out of order in the series.
Denis and I have been talking further about how to handle the whole ABA situation. It helped that I listened to a message that Kathy Winters left on the machine yesterday, saying that there's a lady named Linda Heck who works for the school's autism group. She's going to observe Nikko on the 20th of October and then will talk to us about her findings. I'm very curious to hear what she thinks, if ABA would be a good option for him, and how we could possibly go about getting it. I wonder if we could do ABA through the school, or if we'd have to go to a private service, and then wonder how we'd pay for it. I've really got to take advantage of Nikko during these preschool years, especially while he's working with these two teachers who seem to know what they are doing, are sensitive to Nikko in this mixed class environment, and especially since Kathy is a speech therapist. Also, these teachers seem to really CARE about Nikko and his development, and seem to be working with him to reach his IEP goals. I have NO idea if any teacher in Nikko's future will work as hard for Nikko as Kathy and Margie are. I have no idea if Nikko will be able to go to Kindergarten after the preschool years. What if he has to go to a special school? Can he possibly be mainstreamed into Fairview? With an aide? So many unknowns here. Finally, I am seriously toying with the idea of doing home-based therapy with him, with me as his facilitator. I am hesitant because Ronin and Audrey are here in the mix, are so young and demanding of my attention more than Nikko is. I don't know if I will be able to do 1:1 therapy with Nikko without the babies. Maybe I should look into having Chinny come over again, perhaps in the spring or maybe even in the summer months when Nikko doesn't have school, to play with Ronin and Audrey while I do some intensive therapy sessions with Nikko. I am not a trained therapist, by any means. But I like to read, and I have had to read lots of things about autism and every other topic useful to run this household including eating right, child rearing, and all Ronin's allergies. One big thing I am so worried about, and the thing that keeps me from believing that I am qualified to take on this huge role, is that I am not patient enough. It sounds trite. But all the therapists have a deep well of patience with their clients, are able not to take rejections personally and are able to keep moving forward despite slow progress. Lately, Ronin seems to push my buttons all in the wrong direction and I am constantly harping on his whining. It's not healthy, and I don't feel good about it. If I can't keep my cool with Ronin, who is only 2, how can I possibly keep my cool with Nikko? This is my daily struggle, my daily cross to bear. Some days I'm in a great mood and there's no yelling to be had anywhere. But yesterday I was so annoyed at Ronin that everything he did was setting me off. Today I was so fed up with the fighting between the boys, the pushing and the whining and the unfair taking of each other's toys that I'm sure I screamed my anger more than once. Nikko even covered his ears a few times while I was walking around in a rant. I'm not proud of it. And even more so, how am I going to calm myself if I have to become a sit-down teacher with Nikko? Don't recommend yoga or pilates. I hardly have any time after the kids go to bed to be blogging, and I have to delete a show on the DVR because I just won't have time to sit for a whole hour to concentrate on a complicated storyline. I've actually looked up online how to have more patience, and have not found anything satisfying. Go to another room and close the door? Yeah, and when I open it all three kids will be screaming, pounding away at the door, tears and spit all over their faces because I separated from them for a minute of "peace". Scream into a pillow? Done that. Doesn't help to unleash my anger. Pound the wall? Sure, but not good for the furniture. Count to 10? Works sometimes, but not when the anxious bubble has beat me to the top. *SIGH* Well, I've got to stop blogging so I can get in five minutes of reading an autism book. I've even stopped my subscription to Real Simple, my favorite magazine, because I can't keep up with the issues that are coming. I will just read the articles I've ripped out of past issues, read up to the ones I got before discontinuing, and not subscribe to anything else. No time to read a magazine. :(
Tuesday, October 6, 2009
Baptism / Research
I spent the afternoon with Ronin at a new allergist. Ronin's former allergist closed their Barrington offices and reside in Elgin and Lake Zurich, too far for me to travel with the brood just for a flu shot observation. The new allergist is in Hoffman Estates, Higgins & Barrington road so much more manageable. He's still allergic to dairy, eggs and peanuts/all tree nuts, but also found a small reaction to feathers, and an allergy to dogs. No reaction to cats or dust mites. Hmmm.... we have to weigh our options about having Lego in the house.
Nikko had a huge tantrum when we left, but when we got back he had fallen asleep in the living room. The rest of the evening was uneventful, but I often look at Nikko and wonder if letting him "play" with his cars along the bookcase ledge by the picture window is a good thing. It's probably stim-like letting him run the cars back and forth, but he can break away at times to look at the tv or at books. Lately, Ronin has been going up to Nikko and grabbing cars right out of his hands. If a battle ensues and Ronin gets away, Nikko comes to me, grabs my hand and leads me right to Ronin. He lets go and looks at Ronin, then to me to solve the problem. I have to stand there and figure out the problem because Nikko can't tell me what happened. Often, I have to watch and see what cars Nikko was playing with so I can determine if Ronin has to lose what he's got, to be fair, or if Nikko is just wanting what Ronin has. It's been exhausting to separate these two when they fight.
On the imitation front, Denis told me yesterday that Nikko imitated the motion for Want when he prompted Nikko with cake. We were at Alessandro Orquiola's baptism and had to placate the kids for a while before lunch was served. Nikko was following the other kids who were running around, and found refuge under the draped cake/drink table. I followed him to see what he was doing and almost had a heart attack when I saw that he was standing in front of Alessandro's cake. But Nikko simply dove to the floor and crawled under the table, joining the cousins in the dark. If he didn't make a move for the cake, then I was strangely satisfied with this activity because he was being social and because it made him happy. While we ate, Nikko stood nearby and was standing on one leg, then falling to the floor. I wonder if he needed some sensory input. I think he gets some input during school hours and on the weekends he's not getting anything. Hmmmmm. I gotta remember to borrow the trampoline from the in-laws when we go to dinner on Friday, if they aren't using it. It's supposed to be an OT thing. If they can't spare it, then that's the next thing I'm going to buy for Nikko. Ronin can share it, no problem. But it's mainly for Nikko. Anyway, Kathy told me that she squatted down to say hi to Nikko, then he came up to her and kissed her on the cheek. How cool is that? Way cool!
OK, now it's downer time... Since Nikko's Oct. 2 visit Friday with Dr. Keen, I've been trolling the internet for info on ABA Therapy and variations thereof. This morning I called Blue Cross Blue Shield and asked them if Nikko had any coverage since he's autistic. The lady said I had to provide a 5-digit procedure code for therapy and then they could determine if he's covered for anything. I was confused, because I thought a law had just been passed in Illinois that said up to $36,000 and all services for those with autism were covered. She plainly told me that BCBS is a goverment plan and therefore the law does not apply to them because it was a state law, not a government law. That totally took the wind out of my sails. BCBS will cover some services for PT, OT, and Speech, a $30 copay and up to 50 visits per year. But that will hardly meet the needs of ABA Therapy, which can be 25-40 hours per week. It's looking like BCBS probably won't be able to cover any ABA Therapy and we may have to pay out of pocket if we go that route. I've listed other options, but it's looking very dreary for us. I wrote an email to Nikko's teachers letting them know our situation and if they had recommendations since they've probably encountered all this before, so I'll see what they have to say. I hope Ms. Winters can shed some light, especially since we're looking for an outside speech therapist too. I'm reading posts on other websites to see what other people have done in this situation, and the info is quite sketchy. I wonder why! My heart is sinking because I'm finding out that one hour of ABA could go anywhere from $20 to $45 to even $120 depending where you go. On the Naperville Meetup site I'm finding some really good threads about it, and jotted down some names of companies, but am hearing that some of those places are extremely expensive. I've got lots to research, little time, and no template to follow right now. Very disheartening, really. Another option is to self-teach ABA to Nikko, but I have two other kids under 3 and it's really hard while they are around. Somehow I've got to do something, I can't let Nikko become stagnant! This is also why I am grateful for preschool. They are keeping him engaged in the mornings, except Mondays. Perhaps I should line up a speech therapist for Nikko now, and get to ABA later. That's a start. It was a lot easier when we were going through Early Intervention where they did all the searching for therapists and services for me. Now that it's all up to me to get Nikko services, I am feeling totally overwhelmed. I don't think I will be for long; I'm about finding a solution to a problem. That's why I got the MBA, right??
Nikko had a huge tantrum when we left, but when we got back he had fallen asleep in the living room. The rest of the evening was uneventful, but I often look at Nikko and wonder if letting him "play" with his cars along the bookcase ledge by the picture window is a good thing. It's probably stim-like letting him run the cars back and forth, but he can break away at times to look at the tv or at books. Lately, Ronin has been going up to Nikko and grabbing cars right out of his hands. If a battle ensues and Ronin gets away, Nikko comes to me, grabs my hand and leads me right to Ronin. He lets go and looks at Ronin, then to me to solve the problem. I have to stand there and figure out the problem because Nikko can't tell me what happened. Often, I have to watch and see what cars Nikko was playing with so I can determine if Ronin has to lose what he's got, to be fair, or if Nikko is just wanting what Ronin has. It's been exhausting to separate these two when they fight.
On the imitation front, Denis told me yesterday that Nikko imitated the motion for Want when he prompted Nikko with cake. We were at Alessandro Orquiola's baptism and had to placate the kids for a while before lunch was served. Nikko was following the other kids who were running around, and found refuge under the draped cake/drink table. I followed him to see what he was doing and almost had a heart attack when I saw that he was standing in front of Alessandro's cake. But Nikko simply dove to the floor and crawled under the table, joining the cousins in the dark. If he didn't make a move for the cake, then I was strangely satisfied with this activity because he was being social and because it made him happy. While we ate, Nikko stood nearby and was standing on one leg, then falling to the floor. I wonder if he needed some sensory input. I think he gets some input during school hours and on the weekends he's not getting anything. Hmmmmm. I gotta remember to borrow the trampoline from the in-laws when we go to dinner on Friday, if they aren't using it. It's supposed to be an OT thing. If they can't spare it, then that's the next thing I'm going to buy for Nikko. Ronin can share it, no problem. But it's mainly for Nikko. Anyway, Kathy told me that she squatted down to say hi to Nikko, then he came up to her and kissed her on the cheek. How cool is that? Way cool!
OK, now it's downer time... Since Nikko's Oct. 2 visit Friday with Dr. Keen, I've been trolling the internet for info on ABA Therapy and variations thereof. This morning I called Blue Cross Blue Shield and asked them if Nikko had any coverage since he's autistic. The lady said I had to provide a 5-digit procedure code for therapy and then they could determine if he's covered for anything. I was confused, because I thought a law had just been passed in Illinois that said up to $36,000 and all services for those with autism were covered. She plainly told me that BCBS is a goverment plan and therefore the law does not apply to them because it was a state law, not a government law. That totally took the wind out of my sails. BCBS will cover some services for PT, OT, and Speech, a $30 copay and up to 50 visits per year. But that will hardly meet the needs of ABA Therapy, which can be 25-40 hours per week. It's looking like BCBS probably won't be able to cover any ABA Therapy and we may have to pay out of pocket if we go that route. I've listed other options, but it's looking very dreary for us. I wrote an email to Nikko's teachers letting them know our situation and if they had recommendations since they've probably encountered all this before, so I'll see what they have to say. I hope Ms. Winters can shed some light, especially since we're looking for an outside speech therapist too. I'm reading posts on other websites to see what other people have done in this situation, and the info is quite sketchy. I wonder why! My heart is sinking because I'm finding out that one hour of ABA could go anywhere from $20 to $45 to even $120 depending where you go. On the Naperville Meetup site I'm finding some really good threads about it, and jotted down some names of companies, but am hearing that some of those places are extremely expensive. I've got lots to research, little time, and no template to follow right now. Very disheartening, really. Another option is to self-teach ABA to Nikko, but I have two other kids under 3 and it's really hard while they are around. Somehow I've got to do something, I can't let Nikko become stagnant! This is also why I am grateful for preschool. They are keeping him engaged in the mornings, except Mondays. Perhaps I should line up a speech therapist for Nikko now, and get to ABA later. That's a start. It was a lot easier when we were going through Early Intervention where they did all the searching for therapists and services for me. Now that it's all up to me to get Nikko services, I am feeling totally overwhelmed. I don't think I will be for long; I'm about finding a solution to a problem. That's why I got the MBA, right??
Sunday, October 4, 2009
Band Competition @Prospect High School
We all seemed to have a late start this morning, by an hour. Before I knew it, it was lunchtime. :P Ronin's naptime soon followed, and then by luck Nikko fell asleep around 4:30. I had the opportunity to leave the kids with Denis and run to Costco and Jewel for provisions. I chatted with Atz and she mentioned that Tristan had a band competition at Prospect High School. I was surprised, and remarked that we should all go see it. Prospect High School is really only blocks away from us. The only caveat was that it was raining, drizzling kinda heavy. Still, I was up for the challenge. Crazy. And after finding parking far from the school, Atz, her girls, and our clan (sans Denis, who went to pick up Lego from Petsmart where he finally got a bath, but joined us later) raced up toward the football field. I had the kids in the double stroller, wearing Audrey. I didn't bring any food bag because I didn't think we would stay long. Due to the rain, we discovered that the bands would continue in the gym, so that's where we ended up. I wanted the boys to experience something totally different and exciting, but once we got into the gym I saw that we would have to sit up in bleacher seats. I didn't think the boys would sit still for this, but gave it a try. I also sent Rory to the concession stand to get 3 bags of M&Ms in case Nikko had a meltdown. Unfortunately, I had no food for Ronin and didn't think I would need it. Atz carried Ronin up into the seats while I led Nikko by hand. Nikko was surprisingly calm and walked up the steps without any nervousness. We sat down and Ronin started getting antsy already. I used to think going out with Nikko was the only problem, but Ronin is just as stubborn and sometimes a curious troublemaker. We sat for a few minutes before Glenbrook South High School marched on to the scene, and a minute before they were going to play, Ronin was getting vocal and Nikko was also starting to get restless. I tore open the bag of M&Ms and started feeding them to Nikko, who froze in his steps. Ronin needed more persuading from Atz to look at the band, flags and instruments. I suddenly realized that me being there with the boys was a total mistake because this was a band COMPETITION, not a band concert or show. I wanted to get up and take the boys out but it was too late; the people running the competition wouldn't let us out at this point anyway, so I prayed that Ronin wouldn't struggle, that Nikko wouldn't get overstimulated by the LOUD music, drums and percussion, and that we would be able to maintain silence until they were finished. Lucky for us, Ronin sat by my side and was only a little vocal, and stopped trying to get out of the seats. Nikko ate the M&Ms and did only a little leaning on the person sitting in front of us, who was thankfully a kind person. Audrey was a little restless at times, too, which worried me even more than the boys because if she wouldn't take the pacifier then there was no calming her. I looked around at the sea of parents and noticed that there were no babies in the stands. There were a few younger kids, but no one that might start crying. The kids got a kick out of the applause between numbers and they all tried clapping their hands too. When it was all over, I immediately scooped our kids up and walked us down. I was able to catch a glimpse of Tristan, second to the front of his row, in his uniform and carrying his baritone. We all walked out in the rain, headed home and did our bath routine. We survived our outing, but I know that in the future I should not bring the kids to something that we have to remain quiet. Which actually brings me to wonder about the baptism tomorrow. I wonder if we should go and hang out in the vestibule, because the kids will not sit still for it. Mom would probably tell me to go and try to have the kids sit still, just so they can experience being in church, but I worry that they will be loud and distracting. We will go, but I will be realistic and won't expect us to be in the main part of the church. Anyway, I didn't think Nikko was tired enough to fall asleep at bedtime, but he must have been ok with going to bed because I was able to leave the room without a protest. And he didn't try to climb into Ronin's bed either.
Saturday, October 3, 2009
Visit @ Marianjoy
I stayed up WAY too late last night after blogging, to watch the Olympic bid for Chicago to host the 2016 Olympic games. I wanted to see Michelle and Barack Obama give their side of the presentation, so I stayed up late and was not disappointed with their speeches. But it ended at 2:45a. Needless to say, I suffered greatly 4 hours later. Can't seem to sleep so late anymore now that preschool is a priority.
Nikko and I arrived at Marianjoy early. We were in a hospital room and a nurse brought in a colorful rug mat, some cars and blocks for Nikko to play with. Dr. Mary Keen normally runs late, I've been told, but she wasn't that late for our appointment. Just a little. She was a very natural-feeling woman, smiling and listened eagerly and without judgement to what I said. I brought a list of concerns and that's what we talked about. I wasn't there to get another diagnosis of autism for Nikko; I already have TWO, and it's fairly obvious. I asked about the biomedical approach as well as the GFCF diet. She was supportive, telling me that it wouldn't hurt to try the diet if I wanted to, but she was not a supporter of biomed. Instead, she suggested Applied Behavior Analysis Therapy (ABA), which was the basis of our whole conversation after that. This kind of therapy involves something called "discrete trials," where a behavior is requested, then rewarded with a desired object/action if met. If the behavior is not met, no reward is given and they try again. Pavlovian, somewhat. But practically every concern I mentioned today was met with the fact that ABA can help Nikko behave appropriately. It's about replacing the unwanted behavior with a positive behavior. Don't ask me how, truly, because I am literally at the starting line trying to figure it all out.
wrote down the concerns I wanted to address:
Biomed - she didn't recommend it
Speech - she is recommending outside speech therapy, but someone that will work in conjunction with the school for Nikko.
Stims - something ABA can correct
Signing - the fact that he is communicating is great. Continue this, especially if he's comfy doing it, but also reinforce with pictures/PECS.
Food motivations i.e. Oreos, Fruit Snacks. Bad to give in? Yes. ABA can help correct.
Nikko getting out of bed and going into Ronin's - something ABA can correct, and perhaps he just wants Ronin's company. Not a bad thing.
Auditory Sensitivity - could be apraxia. More on this below.
Clinginess - goes with maturity, and just being Nikko.
When we first got there, Nikko had already begun to whine because he didn't want to be in the stroller. I think he also wanted a cookie from the food bag. Luckily and unluckily, the receptionist pulled out a jar of CANDY. I chose the M&Ms for Nikko because I figured I could make it last longer. Nikko was enthralled with them, and even signed More Candy with me. Once they ran out, however, I had to find a replacement fast. I resorted to the Fruit Snacks in my backpack, and it became an item of focus for him later on, much to my dismay.
I told Dr. Keen about the time that I held out a cookie for Nikko but put it near my mouth so he could watch my lips. I said Cookie and wanted him to say the word or make a noise that sounded like cookie so that I could reward him with it. He signed More, and Cookie Please, but I held the cookie to my mouth and repeated Cookie. I think he could tell what I wanted him to do, because he started shaking his head in strong protest and started wailing in disagreement. It was as if he didn't want to say the word. Dr. Keen asked me if I was perhaps asking Nikko to say the word and he was trying but he couldn't do it? I thought that Nikko was just being stubborn, but Dr. Keen stopped my thought and told me that possibility Nikko could have wanted to say the word but couldn't physically say the word, because right then he didn't have the motor planning skills to do so. I realized that maybe I was pushing Nikko to say Cookie, or CUH, or OOK, but he didn't know how to say it. And I felt like such a bad person! She didn't mean for me to feel bad at all. She just put it out there that he could have apraxia, which is a disorder of motor planning, that is the loss of ability to carry out learned purposeful movements, despite the desire and the physical ability to do these movements. I remember on that day, I had read something somewhere that it was so important to try to make Nikko say a requested word. I immediately felt like it was imperative to challenge Nikko. Unfortunately, after a 30-minute tantrum Nikko gave up on the cookie and left the room completely, and I was exhausted because it was a lose-lose situation.
Back to Dr. Keen, I believe our time with her was very beneficial to us. She highly recommends ABA Therapy for Nikko, and I now agree after reading some materials as well as posts from other moms. Later in the day, Nikko was asking for Cookie. He didn't eat a great lunch so I didn't want to give in to him. Nikko turned on the relentless whiny juices and he went on and on and on. I was tired and my nerves were grating. Ultimately, and defeatedly, I gave him a butter cookie to shut him up, and then I felt bad about everything. I suddenly fell apart and told myself that ABA will help him not be so relentless about wanting a cookie from me. After I stopped bawling to myself, I started getting us ready to meet up with the Alog Clan for dad's 65th birthday dinner at Senoya Buffet. During dinner, it was Ronin's turn to crank up the whining and be relentless. He wanted the fried egg noodles from Nikko's plate. I gave Ronin some to see if he'd react, and I believe he did start rubbing his face. Therefore I restricted him from them, and Ronin was livid. Sucks having a kid be so loud in so small a place! I tried to stay calm while trying to placate Ronin but it was just awful. Nikko, on the other hand, was an ANGEL. He even got some running time squeezed in by bolting from our table to the buffet area and back. Probably very annoying to the staff, but I couldn't handle Nikko while I handled Ronin. Denis tried to help, as did Atz's Dennis. We headed home late and gave baths late. At the end of the boys' bath, Nikko started melting down and refused to stand up, refused to get dressed, and was just plain tired. I think he was probably overstimulated and hit the wall, figuratively. I'm tired, too.
Nikko and I arrived at Marianjoy early. We were in a hospital room and a nurse brought in a colorful rug mat, some cars and blocks for Nikko to play with. Dr. Mary Keen normally runs late, I've been told, but she wasn't that late for our appointment. Just a little. She was a very natural-feeling woman, smiling and listened eagerly and without judgement to what I said. I brought a list of concerns and that's what we talked about. I wasn't there to get another diagnosis of autism for Nikko; I already have TWO, and it's fairly obvious. I asked about the biomedical approach as well as the GFCF diet. She was supportive, telling me that it wouldn't hurt to try the diet if I wanted to, but she was not a supporter of biomed. Instead, she suggested Applied Behavior Analysis Therapy (ABA), which was the basis of our whole conversation after that. This kind of therapy involves something called "discrete trials," where a behavior is requested, then rewarded with a desired object/action if met. If the behavior is not met, no reward is given and they try again. Pavlovian, somewhat. But practically every concern I mentioned today was met with the fact that ABA can help Nikko behave appropriately. It's about replacing the unwanted behavior with a positive behavior. Don't ask me how, truly, because I am literally at the starting line trying to figure it all out.
wrote down the concerns I wanted to address:
Biomed - she didn't recommend it
Speech - she is recommending outside speech therapy, but someone that will work in conjunction with the school for Nikko.
Stims - something ABA can correct
Signing - the fact that he is communicating is great. Continue this, especially if he's comfy doing it, but also reinforce with pictures/PECS.
Food motivations i.e. Oreos, Fruit Snacks. Bad to give in? Yes. ABA can help correct.
Nikko getting out of bed and going into Ronin's - something ABA can correct, and perhaps he just wants Ronin's company. Not a bad thing.
Auditory Sensitivity - could be apraxia. More on this below.
Clinginess - goes with maturity, and just being Nikko.
When we first got there, Nikko had already begun to whine because he didn't want to be in the stroller. I think he also wanted a cookie from the food bag. Luckily and unluckily, the receptionist pulled out a jar of CANDY. I chose the M&Ms for Nikko because I figured I could make it last longer. Nikko was enthralled with them, and even signed More Candy with me. Once they ran out, however, I had to find a replacement fast. I resorted to the Fruit Snacks in my backpack, and it became an item of focus for him later on, much to my dismay.
I told Dr. Keen about the time that I held out a cookie for Nikko but put it near my mouth so he could watch my lips. I said Cookie and wanted him to say the word or make a noise that sounded like cookie so that I could reward him with it. He signed More, and Cookie Please, but I held the cookie to my mouth and repeated Cookie. I think he could tell what I wanted him to do, because he started shaking his head in strong protest and started wailing in disagreement. It was as if he didn't want to say the word. Dr. Keen asked me if I was perhaps asking Nikko to say the word and he was trying but he couldn't do it? I thought that Nikko was just being stubborn, but Dr. Keen stopped my thought and told me that possibility Nikko could have wanted to say the word but couldn't physically say the word, because right then he didn't have the motor planning skills to do so. I realized that maybe I was pushing Nikko to say Cookie, or CUH, or OOK, but he didn't know how to say it. And I felt like such a bad person! She didn't mean for me to feel bad at all. She just put it out there that he could have apraxia, which is a disorder of motor planning, that is the loss of ability to carry out learned purposeful movements, despite the desire and the physical ability to do these movements. I remember on that day, I had read something somewhere that it was so important to try to make Nikko say a requested word. I immediately felt like it was imperative to challenge Nikko. Unfortunately, after a 30-minute tantrum Nikko gave up on the cookie and left the room completely, and I was exhausted because it was a lose-lose situation.
Back to Dr. Keen, I believe our time with her was very beneficial to us. She highly recommends ABA Therapy for Nikko, and I now agree after reading some materials as well as posts from other moms. Later in the day, Nikko was asking for Cookie. He didn't eat a great lunch so I didn't want to give in to him. Nikko turned on the relentless whiny juices and he went on and on and on. I was tired and my nerves were grating. Ultimately, and defeatedly, I gave him a butter cookie to shut him up, and then I felt bad about everything. I suddenly fell apart and told myself that ABA will help him not be so relentless about wanting a cookie from me. After I stopped bawling to myself, I started getting us ready to meet up with the Alog Clan for dad's 65th birthday dinner at Senoya Buffet. During dinner, it was Ronin's turn to crank up the whining and be relentless. He wanted the fried egg noodles from Nikko's plate. I gave Ronin some to see if he'd react, and I believe he did start rubbing his face. Therefore I restricted him from them, and Ronin was livid. Sucks having a kid be so loud in so small a place! I tried to stay calm while trying to placate Ronin but it was just awful. Nikko, on the other hand, was an ANGEL. He even got some running time squeezed in by bolting from our table to the buffet area and back. Probably very annoying to the staff, but I couldn't handle Nikko while I handled Ronin. Denis tried to help, as did Atz's Dennis. We headed home late and gave baths late. At the end of the boys' bath, Nikko started melting down and refused to stand up, refused to get dressed, and was just plain tired. I think he was probably overstimulated and hit the wall, figuratively. I'm tired, too.
Friday, October 2, 2009
Target - Success!
Nikko's teacher wrote that they are using a request board at snack for the food item and water. They've been using a picture schedule with the entire class, but for Nikko specifically they use a ring of pictures of actions in the class like Stand Up and Sit Down. They said it will reinforce what he hears by him seeing the action. Mrs. Beyer said that when he boarded the bus to go home, Nikko started to get upset. She didn't know why, but it was enough that she gave him his burp cloth from the backpack and that helped. I still don't know what set him off, since it didn't have anything to do with school, presumably. He remained in a good mood for the rest of the day. After lunch it took me a while but I was determined to get the kids out of the house for a little while since everyone has been home bound because of sicknesses. Poor Ronin and Audrey haven't been outside of the house (except for Nikko's morning bus) since probably Saturday. My goal was to go to Target, but hoped that the kids would fall asleep for a nap in the Pilot. Thankfully, that's exactly what happened. I was able to go scope out a place called the Nibbles Cafe in Wheeling. It's in a corner of a strip mall and seemed to look like a nice place, but still haven't ventured in there since there's a "cover charge". I think it's akin to the Kohl Children's Museum but on a smaller scale. I do want to try it, though. I almost decided to go home because it was raining steadily during our outing, but thought the better of it. We got to Target and I used the double stroller. I made Ronin do most of the walking this time, and totally avoided the toy section. We got some bleach, diaper genie refills, sweatpants for Nikko, and hats for all the kids for the chilly weather. I had to use Oreos to placate the boys, and it was snack time anyway. So we made it out of the store in one piece, a little complaining from Ronin for more cookies, but overall it was successful. Audrey was an ANGEL. Nikko was also good, as long as he had a cookie to munch around its perimeter. My view was whatever it took to keep the peace, I did it. Too bad I didn't have lollipops. We got home, dinnertime rolled around, and then it was bedtime.
Nikko is getting better at signing for things, but I still have to prompt him. What was great about today was that at lunch I baked him a frozen pizza that Denis got, with cheese and pesto. I looked warily at the label because Nikko doesn't eat things when he can see the green. But I gave it a shot and perhaps he was really hungry because the pizza was a hit with Nikko. When he finished the first slice I signed More Pizza repeatedly, making a zigzag and exaggerating a Z sound. He attempted the zigzag and made a sound that sounded like ZUH. It was encouraging, although fleeting, but I went with it. Building on his enthusiasm was so key for me. That's also how I got him to copy me signing Butter, because he wanted bread and butter very much. I'm working on signing Napkin, Wipe and Hands, including a verbal prompt, because Nikko wipes his hands on the front of his shirt all the time instead of on a napkin. I wonder if I'll be able to succeed on this. Working on it! I don't think I realized it truly until today that Nikko and I are having a significant communication relationship. He's always tried to do this, via pulling my arm or finger off while dragging me to the kitchen for something, and he still does this. But along with putting in signs, and some verbal prompting, I feel like we're trying to interact here. I guess it's going along with him maturing. I hope to bring up anything I could possibly be wondering during our visit with Dr. Mary Keen at Marianjoy Rehabilitation Hospital in Wheaton tomorrow. We're forgoing preschool to keep our appointment. I'm nervous for Nikko, and for myself in that we actually find the place, get to the office on time, and not get lost. I also hope this doctor can give me more guidance with Nikko. I hope. I hope.
Nikko is getting better at signing for things, but I still have to prompt him. What was great about today was that at lunch I baked him a frozen pizza that Denis got, with cheese and pesto. I looked warily at the label because Nikko doesn't eat things when he can see the green. But I gave it a shot and perhaps he was really hungry because the pizza was a hit with Nikko. When he finished the first slice I signed More Pizza repeatedly, making a zigzag and exaggerating a Z sound. He attempted the zigzag and made a sound that sounded like ZUH. It was encouraging, although fleeting, but I went with it. Building on his enthusiasm was so key for me. That's also how I got him to copy me signing Butter, because he wanted bread and butter very much. I'm working on signing Napkin, Wipe and Hands, including a verbal prompt, because Nikko wipes his hands on the front of his shirt all the time instead of on a napkin. I wonder if I'll be able to succeed on this. Working on it! I don't think I realized it truly until today that Nikko and I are having a significant communication relationship. He's always tried to do this, via pulling my arm or finger off while dragging me to the kitchen for something, and he still does this. But along with putting in signs, and some verbal prompting, I feel like we're trying to interact here. I guess it's going along with him maturing. I hope to bring up anything I could possibly be wondering during our visit with Dr. Mary Keen at Marianjoy Rehabilitation Hospital in Wheaton tomorrow. We're forgoing preschool to keep our appointment. I'm nervous for Nikko, and for myself in that we actually find the place, get to the office on time, and not get lost. I also hope this doctor can give me more guidance with Nikko. I hope. I hope.
Thursday, October 1, 2009
School routine
Nikko continues to come home from school in a good mood (except that one day this week). When he comes home we go inside, take off shoes and socks, and then I walk him to hang up his backpack on a hook. I'll take out reports and papers, then sit with him while he noshes on Cheerios or juice while I see what happened. Looks like during snack yesterday they had peaches, and today they had graham crackers. Sounds like our kind of snack here at home. Ms. Winters wrote:
He did pretty well today choosing bus/bubbles using 2 pictures. Some vocal play especially w/guh for gone!
That's good to hear, that she is really working on his verbal skills. At home, I don't think I've elicited a true vocal word from him, but I do keep trying. I read somewhere that once a kid realizes that he will get more things if he uses his voice instead of communicating another way, he gets it and keeps going. With Ronin chattering up a storm around him, I wonder why Nikko doesn't feel a need to talk. He's still grunting and making "yolking" sounds as if his tongue is swollen from Novocaine. That's the best way I can describe it. Also in his backpack was a fundraiser for some kind of personalized pans and a field trip slip for October 16 to the Grove in Glenview. I wonder if he'll remember that he's been there before. It's quite a venture, all to do before 11am. Yowza! He managed to get sleep around 3:30-4-ish. It was while I was giving the kids snack. His head started bobbing and it rested on his hand, so I picked him up and put him on the couch. I think he got a good 2 hours in. The past 2 nights he's been getting up after we close the door and getting into Ronin's bed. Ronin then would protest loudly and we'd have to go in and put Nikko back. Denis lay on the floor until the boys fell asleep. But tonight, after Nikko did it again, Denis went it and put him back, sat for a few minutes, then closed the door and left, and Nikko stayed put. I think. I may have to go check before I go to bed myself. I have no idea how to address that kind of problem.
Nikko felt a little warm today, but it wasn't warm enough for it to register as a temp with the ear thermometer, which he dislikes. I think he won't succumb to a fever, and therefore is fine to go to school. I have to remember to call him in on Thursday night, because we're going to Marianjoy on Friday morning. Gotta start planning for that excursion.
He did pretty well today choosing bus/bubbles using 2 pictures. Some vocal play especially w/guh for gone!
That's good to hear, that she is really working on his verbal skills. At home, I don't think I've elicited a true vocal word from him, but I do keep trying. I read somewhere that once a kid realizes that he will get more things if he uses his voice instead of communicating another way, he gets it and keeps going. With Ronin chattering up a storm around him, I wonder why Nikko doesn't feel a need to talk. He's still grunting and making "yolking" sounds as if his tongue is swollen from Novocaine. That's the best way I can describe it. Also in his backpack was a fundraiser for some kind of personalized pans and a field trip slip for October 16 to the Grove in Glenview. I wonder if he'll remember that he's been there before. It's quite a venture, all to do before 11am. Yowza! He managed to get sleep around 3:30-4-ish. It was while I was giving the kids snack. His head started bobbing and it rested on his hand, so I picked him up and put him on the couch. I think he got a good 2 hours in. The past 2 nights he's been getting up after we close the door and getting into Ronin's bed. Ronin then would protest loudly and we'd have to go in and put Nikko back. Denis lay on the floor until the boys fell asleep. But tonight, after Nikko did it again, Denis went it and put him back, sat for a few minutes, then closed the door and left, and Nikko stayed put. I think. I may have to go check before I go to bed myself. I have no idea how to address that kind of problem.
Nikko felt a little warm today, but it wasn't warm enough for it to register as a temp with the ear thermometer, which he dislikes. I think he won't succumb to a fever, and therefore is fine to go to school. I have to remember to call him in on Thursday night, because we're going to Marianjoy on Friday morning. Gotta start planning for that excursion.
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