Today is the last day that Chandler will spend at the center. I am eager to go home and see how Chan is in his natural habitat. I have wanted to comment that he is better with transitions, but I don't think I can really report that until he is back at home. He indeed has been really good in transitioning between things here, but he is on such a predictable schedule here (wake up, eat, play, get dressed, go to appointment, come home, eat lunch, play, go to appointment, come home, eat dinner, play, bath , bed) that he has not really been challenged with the unexpected at all.
This morning he and Kai were playing in the same room, and Chandler looked at him for the first time. Kai didn't see him do it, so there was no eye contact, but for about 10 seconds, Chan was watching what Kai was doing. I am gonna be watching those two like a hawk today to see if they actually have any interactions.
July 31, 2004
Day Eleven
So one of the things that they tell you to look for is a shift in affect. Chandler has generally been a happier guy in the last week. I mentioned last week that every day seemed like one of his best days from before we came. now I can honestly say that each day this week has been better than any of his best days.
When we first got here, Chandler had a melt down one night when I was trying to feed him. Danielle was really sweet about it and later gave me one of those, 'wow, I didn't know you had it that bad, you're doing great' talks. That was a week and a half ago or so, and I just realized that was the last time he really freaked out about any thing.
One of the staff members, Marvin, who has worked with Chandler the most since we have been here, was helping me put the car seat in the car and once it was in, we both thought we heard Chandler say "sit down" twice as he was climbing into his chair. If that is what it was, that would be the first new word he has used since we have been here, and in even in the last several weeks/months.
He hastried some new foods this week too. I have not been able to get him to eat apples (or any other fruit than bananas) now in the morning he askes for apple and has eaten peaches and kiwi.
But the biggest thing for me today was that he was playing with me a little differently tonight before bed time. Huge eye contact and he was really kinda flirting with me. It was so freakin' cute.
When we first got here, Chandler had a melt down one night when I was trying to feed him. Danielle was really sweet about it and later gave me one of those, 'wow, I didn't know you had it that bad, you're doing great' talks. That was a week and a half ago or so, and I just realized that was the last time he really freaked out about any thing.
One of the staff members, Marvin, who has worked with Chandler the most since we have been here, was helping me put the car seat in the car and once it was in, we both thought we heard Chandler say "sit down" twice as he was climbing into his chair. If that is what it was, that would be the first new word he has used since we have been here, and in even in the last several weeks/months.
He hastried some new foods this week too. I have not been able to get him to eat apples (or any other fruit than bananas) now in the morning he askes for apple and has eaten peaches and kiwi.
But the biggest thing for me today was that he was playing with me a little differently tonight before bed time. Huge eye contact and he was really kinda flirting with me. It was so freakin' cute.
July 30, 2004
Day Ten
Nothing really new to report. He is still using the words he knows more often.
Talking to one of the staff guys today, he said that some clients are reporting improvements popping up even three or four months after the treatment is finished. That would be nice.
Talking to one of the staff guys today, he said that some clients are reporting improvements popping up even three or four months after the treatment is finished. That would be nice.
July 29, 2004
Day Nine
So last night Chandler was getting silly before bedtime as he is want to do, and he started spinning. Nothing new about that. What was new was that after about three revolutions he fell down! He looked up at me from his hands and knees, visibly disturbed by the whole thing, then get got up with a smile on his face and decided to give it another go. This time he almost immediately swayed half way across the room and then tipped over before even getting around twice. He was just a bit more upset this time, and I thought, “what is wrong with you my little spinner” Chandler being able to spin for a long time with out ever falling over like his big brother. Then it hit me, I remembered a mothers story about her son finally getting dizzy like normal kids when he started recovering from his autism! So I gave a good laugh and encouraged him to get up and try spinning again, evil yes… but I had to see if he really couldn’t do it any more. So again he fell down after about two revolutions, not a pretty fall either, and he was really upset and confused by the whole thing. At that point he decided that he was done with spinning and just spent some time flopping onto a pile of pillows.
Today he as been a bit more verbal. He now consistently asks for bananas and apples rather than putting my hand on them when he wants them. He is also babbling a lot more and eye contact with me and Danielle continues to improve. I am looking for it, but I still have not seem him make any eye contact with Soren or Kai.
I was talking to one of the staff members today and telling her how much I appreciate the atmosphere and that they are so cool about whatever my son is doing and not to have to apologize when my boy climbs under the receptionists desk or starts running into the offices. She said that they know how stressful things are for parents of special needs kids and just want to make sure families are relaxed when they are there. Apparently this week one little boy had peed in the trash basket in the waiting room and his mom was really embarrassed. The director of the center just laughed and said, “hey… he made it into the basket, good for him”.
Today he as been a bit more verbal. He now consistently asks for bananas and apples rather than putting my hand on them when he wants them. He is also babbling a lot more and eye contact with me and Danielle continues to improve. I am looking for it, but I still have not seem him make any eye contact with Soren or Kai.
I was talking to one of the staff members today and telling her how much I appreciate the atmosphere and that they are so cool about whatever my son is doing and not to have to apologize when my boy climbs under the receptionists desk or starts running into the offices. She said that they know how stressful things are for parents of special needs kids and just want to make sure families are relaxed when they are there. Apparently this week one little boy had peed in the trash basket in the waiting room and his mom was really embarrassed. The director of the center just laughed and said, “hey… he made it into the basket, good for him”.
July 27, 2004
Day Eight
This morning Chandler called me “mommy” for the first time in about two weeks. This morning he woke me up by sitting next to me on the bed and pushing me. I started patting him on the back, but he pushed my hand away several times and sounded like he was saying “don’t”. I remember thinking, “is he saying ‘don’t’?”, but then I think I fell back asleep. Danielle and I also think that he called me “Ginger” this morning, but it is hard to tell.
Now when I tell him it is time to go to the car, he goes straight to the front door and tries to open it. When I open it for him, he walks straight to the car and stands by the door waiting for me. When I open the car door and tell him to climb in, he climbs into the car and into his car seat on his own. He is also taking direction from me as far as getting out of the car himself and generally going where I ask him too. He might wander left for a minute when I am telling him to go right, but he eventually turns around and goes the right direction.
As it has been officially a week now that he has been laying still and letting me change his diapers, I feel that I can say with confidence that he is a new man in the diapering dept. Matter of fact yesterday I asked him to come up stairs so I could change his diapers, I got everything out and then started to leave the room to go get him (because I was sure he would not have gotten my request and would still be playing at the bottom of the stairs) and as soon as I got to the door, he came over the top step and ran into the bedroom! I am still a little stunned and would like to see this happen a few more times before I will be convinced that it was not a coincidence.
When I left last week, Chan’s floortime therapist, Jennifer, had asked that I make sure he sits down at the table or high chair to eat instead of letting him wander around with food. I told her I would, and boy I sincerely meant it at the time, but I have not had the resolve to be terribly strict with him given all that we are doing this week. Despite my lazyness, the last two times I have given him a bowl of snacks, I have turned around to find him putting his bowl on the table and climbing into the chair to eat. And he sat there and ate the whole time.
Ok…. Very cool thing just happened. I am sitting here typing and Chandler has been walking all over the house. No one else is here and I think he is bored. He came up and pulled on me to get up. After a minute or so of trying to get him to say “up” or “mommy” I gave in and he led me to the front door. I told him we were not going anywhere and came back to the kitchen, he followed me back in, looked at me and said, “car” plain as day. So we are gonna leave a little early for his afternoon session.
Now when I tell him it is time to go to the car, he goes straight to the front door and tries to open it. When I open it for him, he walks straight to the car and stands by the door waiting for me. When I open the car door and tell him to climb in, he climbs into the car and into his car seat on his own. He is also taking direction from me as far as getting out of the car himself and generally going where I ask him too. He might wander left for a minute when I am telling him to go right, but he eventually turns around and goes the right direction.
As it has been officially a week now that he has been laying still and letting me change his diapers, I feel that I can say with confidence that he is a new man in the diapering dept. Matter of fact yesterday I asked him to come up stairs so I could change his diapers, I got everything out and then started to leave the room to go get him (because I was sure he would not have gotten my request and would still be playing at the bottom of the stairs) and as soon as I got to the door, he came over the top step and ran into the bedroom! I am still a little stunned and would like to see this happen a few more times before I will be convinced that it was not a coincidence.
When I left last week, Chan’s floortime therapist, Jennifer, had asked that I make sure he sits down at the table or high chair to eat instead of letting him wander around with food. I told her I would, and boy I sincerely meant it at the time, but I have not had the resolve to be terribly strict with him given all that we are doing this week. Despite my lazyness, the last two times I have given him a bowl of snacks, I have turned around to find him putting his bowl on the table and climbing into the chair to eat. And he sat there and ate the whole time.
Ok…. Very cool thing just happened. I am sitting here typing and Chandler has been walking all over the house. No one else is here and I think he is bored. He came up and pulled on me to get up. After a minute or so of trying to get him to say “up” or “mommy” I gave in and he led me to the front door. I told him we were not going anywhere and came back to the kitchen, he followed me back in, looked at me and said, “car” plain as day. So we are gonna leave a little early for his afternoon session.
update
So I was feeling really good today about Chandler’s progress and got hit with a sad reminder of where he is.
Web arrived in Las Vegas with my sister and I called to talk to him before he went to bed. He was so happy and had lots of things to say about the plane and what was going on at the house. They were all on speaker phone and when my mother told him to talk to Chandler, Web said, “no, I can’t talk to Chandler, my brother can’t talk. He can’t talk very good”. I was really crushed. That was the first time that Web has ever seemed to notice that there was anything different about Chan.
It just made me so sad.
Web arrived in Las Vegas with my sister and I called to talk to him before he went to bed. He was so happy and had lots of things to say about the plane and what was going on at the house. They were all on speaker phone and when my mother told him to talk to Chandler, Web said, “no, I can’t talk to Chandler, my brother can’t talk. He can’t talk very good”. I was really crushed. That was the first time that Web has ever seemed to notice that there was anything different about Chan.
It just made me so sad.
July 26, 2004
Day Seven
So today was a big day for talking. This morning when Chandler was on the table, after the green light had been on for a minute or two, he turned to me and said “BooBah” in the exact tonality of the opening of the show. He had watched Boobah this morning for perhaps the second or third time in his life and has never mentioned it to us before this morning.
Later that day we went to the mall so I could let him run free and explore for a while. When we passed by the pet store, I took him to the birdcage and he was fascinated. I repeated “bird” for him a few times, and then he said it on his own. He has said it before, but I have only heard it from him once.
He is babbling a lot more these days. He will just sit in his car seat and babble in his sing song way. He is also making some different sounds than the usual repertoire he goes with.
Later that day we went to the mall so I could let him run free and explore for a while. When we passed by the pet store, I took him to the birdcage and he was fascinated. I repeated “bird” for him a few times, and then he said it on his own. He has said it before, but I have only heard it from him once.
He is babbling a lot more these days. He will just sit in his car seat and babble in his sing song way. He is also making some different sounds than the usual repertoire he goes with.
July 25, 2004
Day Six
So today I experimented with him. I decided to treat him like he was Webster while we were leaving for the appointments. I told him it was time to go and he went to the door, I opened it and he went to the car. I opened the car door and told him to climb in his seat. The first time he needed me to get him started climbing into the car, but I think he gets it now. We will see if this sticks.
He is starting to take verbal direction from me.
Also, we went to the store and he ran across the store to the childrens section, but every few steps he would stop and turn around and make sure that I was behind him. Usually he looks for me only once every few minutes.
He is starting to take verbal direction from me.
Also, we went to the store and he ran across the store to the childrens section, but every few steps he would stop and turn around and make sure that I was behind him. Usually he looks for me only once every few minutes.
July 24, 2004
Day Five
So today I said to Chandler, “Let’s go to the car, Chan” and of course knowing that he would not hear me or respond, I turned around to go pick him up to take him to the door, and he was already on his way to the door. He put his hand on the doorknob and tried to get out. When I opened the door he walked straight to the car and didn’t try to take off in either direction down the sidewalk. Nice.
Day Four
He has had some fussy times today and yesterday, but looking back at this week, everyday has been like one of his best days. That is probably saying a lot considering we are not at home, there are three other rambunctious boys in the house making noise and he is being carted back and forth to the docs office twice a day. I wish we were at home so I could get a better comparison to what he is like in his natural habitat.
Tomorrow Webster is going home to spend the weekend with daddy and then to my parents house for a week. It will give me a chance to pay a little better attention to what Chandler is doing.
Tomorrow Webster is going home to spend the weekend with daddy and then to my parents house for a week. It will give me a chance to pay a little better attention to what Chandler is doing.
July 23, 2004
Day Three
So he does not protest at all once he is on the table. Still have to hold the ear phone away from his head though. He was falling asleep in the afternoon session and we had to pull out the toys and do a lot of tickling to get him to keep looking at the light.
He is also making better eye contact with me and seems to be understanding me better, but my feeling about that is pretty subjective and I don’t have any good examples to back that up.
I have to mention the staff again. They really try to make things easy on us. If I am late, or early, they don’t care. “Just let me know when you are ready to start” is what I get no matter when we arrive. I have stopped apologizing for my kids when they are not being so pleasant because they are clearly not ruffled at all by it. And one of the really nice things is that they will watch the kids for a few minutes while I take a bathroom break or just stand quietly for a minute in another room to gather myself. Being single mom down here is really stressful. I am ALWAYS with the boys. It is so nice to get 5 minutes to myself to take a breather before loading them into the car for the next adventure.
He is also making better eye contact with me and seems to be understanding me better, but my feeling about that is pretty subjective and I don’t have any good examples to back that up.
I have to mention the staff again. They really try to make things easy on us. If I am late, or early, they don’t care. “Just let me know when you are ready to start” is what I get no matter when we arrive. I have stopped apologizing for my kids when they are not being so pleasant because they are clearly not ruffled at all by it. And one of the really nice things is that they will watch the kids for a few minutes while I take a bathroom break or just stand quietly for a minute in another room to gather myself. Being single mom down here is really stressful. I am ALWAYS with the boys. It is so nice to get 5 minutes to myself to take a breather before loading them into the car for the next adventure.
July 22, 2004
Day Two
He seems almost used to the sessions. Each time he fusses less and less. Today he stopped protesting as soon as the table started moving.
So we went shopping and when we got home I pulled an apple out of the bag and said, “Chandler what’s this”? He immediately gestured toward it and said “apple”. Usually it would take asking about 5 times and then putting it in front of his face to get him to look at it. I wanted to make sure I was hearing right, so I asked him again, and he immediately answered. I did it 5 times total and he answered me every time.
Still letting me change his diapers with out any protest what so ever. He is also cooperating better in letting me get him dressed.
So we went shopping and when we got home I pulled an apple out of the bag and said, “Chandler what’s this”? He immediately gestured toward it and said “apple”. Usually it would take asking about 5 times and then putting it in front of his face to get him to look at it. I wanted to make sure I was hearing right, so I asked him again, and he immediately answered. I did it 5 times total and he answered me every time.
Still letting me change his diapers with out any protest what so ever. He is also cooperating better in letting me get him dressed.
July 21, 2004
Day One
So last night and all day today Chandler has been letting me change his diaper. Just laying there and letting me change it. Usually it is the mother of all wrestling matches accompanied by Chandler screaming his head off and mommy pulling a muscle. If this sticks than I think it will be worth all the time and the money.
Each session today he started out crying, but calmed down quicker each time. The second session he only cried for about 2 minutes and although he will not let them put the headphones on, he will tolerate them holding the earpiece a few inches away from his right ear. He pushes it away occasionally, but a few times he leaned his head up against it to hear the music better.
Today he also made eye contact with my girlfriend Danielle for the first time ever. She was lying on the couch and watching him. He stopped and stared at her for a moment and then smiled back at her. She said that he ran over to her and just looked and smiled at her. Apparently the whole thing lasted about 25 seconds.
We are staying with Danielle and her husband Lars, and their two sons Soren 3.5 and Kai 18 months. Both boys have tried to engage him but he does not respond. It will be a good test to see if he starts to notice them while we are here.
Each session today he started out crying, but calmed down quicker each time. The second session he only cried for about 2 minutes and although he will not let them put the headphones on, he will tolerate them holding the earpiece a few inches away from his right ear. He pushes it away occasionally, but a few times he leaned his head up against it to hear the music better.
Today he also made eye contact with my girlfriend Danielle for the first time ever. She was lying on the couch and watching him. He stopped and stared at her for a moment and then smiled back at her. She said that he ran over to her and just looked and smiled at her. Apparently the whole thing lasted about 25 seconds.
We are staying with Danielle and her husband Lars, and their two sons Soren 3.5 and Kai 18 months. Both boys have tried to engage him but he does not respond. It will be a good test to see if he starts to notice them while we are here.
July 20, 2004
Intake
We arrived at the Sensory Learning Center in Encinitas, California in the afternoon after a long drive down from Los Angeles. The center has only been open for two weeks, but they seem to have thing really together. It is a nice peaceful atmosphere and the staff has this really professional and laid back demeanor. It is run by a married couple, both optometrists, Chris Davis and Susan Daniel. They have a 6 year old autistic son who went through the program in Boulder and they were apparently so pleased with the results that they decided to open one in California.
I was a few minutes late and completely ruffled as I had both boys in tow. When we came it, Dr. Davis and several of the staff members were just hanging out in the lobby waiting for us. They seem to have this, “whatever makes things easy for you” attitude that really takes the stress off. These people clearly know what it is like to have an autistic child and have made a wonderful atmosphere for families like ours.
A staff member played with 3.5 year old Webster in the waiting/playroom while I went in with Chandler. They tried to do some evaluations of his hearing/attention, but he was not having it, so we went straight to the sample session. We got him on the table and he was a little uncomfortable. Once it started moving, he was quiet and still, on his belly and elbows, but when we tried to roll him on his back, he started getting upset. We turned down the lights and tried to get him to put the headphones on and then he really went nuts. He really freaked out and was crying as if in complete distress. It really got to me. All I could think was that it must be like a horrible nightmare. Being in a pitch black room with arms coming out of the darkness to hold you down while a light (even a soft magenta light) shines in your eyes all the while you have no idea what is going on.
But I was determined not to loose it and to try to get him to go the whole 30 minutes. He continued to freak for several minutes until Dr. Daniel had the idea to bring his car seat in to see if he would feel a little safer in it. When we put him in it, he calmed down a lot. He continued to cry through the first half of the trial session, but it was not as bad as it had been. By the second half, he had calmed down and started drinking out of his sippy cup.
The staff stayed really calm the whole time though. Did I mention that I think the staff is great?
I was a few minutes late and completely ruffled as I had both boys in tow. When we came it, Dr. Davis and several of the staff members were just hanging out in the lobby waiting for us. They seem to have this, “whatever makes things easy for you” attitude that really takes the stress off. These people clearly know what it is like to have an autistic child and have made a wonderful atmosphere for families like ours.
A staff member played with 3.5 year old Webster in the waiting/playroom while I went in with Chandler. They tried to do some evaluations of his hearing/attention, but he was not having it, so we went straight to the sample session. We got him on the table and he was a little uncomfortable. Once it started moving, he was quiet and still, on his belly and elbows, but when we tried to roll him on his back, he started getting upset. We turned down the lights and tried to get him to put the headphones on and then he really went nuts. He really freaked out and was crying as if in complete distress. It really got to me. All I could think was that it must be like a horrible nightmare. Being in a pitch black room with arms coming out of the darkness to hold you down while a light (even a soft magenta light) shines in your eyes all the while you have no idea what is going on.
But I was determined not to loose it and to try to get him to go the whole 30 minutes. He continued to freak for several minutes until Dr. Daniel had the idea to bring his car seat in to see if he would feel a little safer in it. When we put him in it, he calmed down a lot. He continued to cry through the first half of the trial session, but it was not as bad as it had been. By the second half, he had calmed down and started drinking out of his sippy cup.
The staff stayed really calm the whole time though. Did I mention that I think the staff is great?
July 19, 2004
The Sensory Learning Center
So I was at a conference in April and heard a woman speak about her treatment center for people with Sensory Integration Disorders which was located in Boulder, Co. It sounded like something Chandler could benefit from, and they was a new center opening near San Diego, so we have decided to give it a go.
I won't go into describing the treatment, but you can find all about it here:
http://sensorylearning.com
The recommend keeping a journal while going through the treatment so that you can see progress, etc. I wanna make mine public so other parents can get this parent's view on the worthwhileness of the program. It is expensive, $2,550 for a 30 day program ( 12 days at the center and then an 18 day follow up at home) but we have decided it is worth the risk.
So check back to see how Chandler progresses in evaluating yet another potential treatment for the child that you love.
I won't go into describing the treatment, but you can find all about it here:
http://sensorylearning.com
The recommend keeping a journal while going through the treatment so that you can see progress, etc. I wanna make mine public so other parents can get this parent's view on the worthwhileness of the program. It is expensive, $2,550 for a 30 day program ( 12 days at the center and then an 18 day follow up at home) but we have decided it is worth the risk.
So check back to see how Chandler progresses in evaluating yet another potential treatment for the child that you love.
Welcome
So I had intended to start this blog months ago to document, for those of you out there who are interested in such things, what is working to curb Chandler's autism and what is not. Today he is starting a new program at the Sensory Learning Center in Encinitas, California and I knew that I had to get a daily journal of this going now. No parents or professinals that I had talked to knew about the program, so I wanted to make sure I offer as much information on it's effectiveness as I can.
I had intended to put together a nicely designed blog of my own, but because I really need to get this started, I decided to put it up on blogger.com for now. I will be expanding it later as I have time.
I will also add more background information on our family and Chandler specific difficulties a bit later.
Feel free to email me with questions.
Ginger... Chandler's mom
I had intended to put together a nicely designed blog of my own, but because I really need to get this started, I decided to put it up on blogger.com for now. I will be expanding it later as I have time.
I will also add more background information on our family and Chandler specific difficulties a bit later.
Feel free to email me with questions.
Ginger... Chandler's mom
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