News and commentary on the autism epidemic and my beautiful boy who is living with autism.
December 3, 2004
I am just so tired and empty
Does any know where Chandler could dump this autism for a few weeks so we could just let out guard down for a time and gather ourselves?
November 29, 2004
Why my boy can spell Mommy better than he can say Mommy
Finding supports theory that autism results from failure of brain areas to work together.
In contrast to people who do not have autism, people with autism remember letters of the alphabet in a part of the brain that ordinarily processes shapes, according to a study from a collaborative program of the National Institute of Child Health and Human Development of the National Institutes of Health.
The study was conducted by researchers in the NICHD Collaborative Program of Excellence in Autism (CPEA) at the University of Pittsburgh and Carnegie Mellon University. It supports a theory by CPEA scientists that autism results from a failure of the various parts of the brain to work together. In autism, the theory holds, these distinct brain areas tend to work independently of each other. The theory accounts for observations that while many people with autism excel at tasks involving details, they have difficulty with more complex information.
"This finding provides more evidence to support a promising theory of autism," said Duane Alexander, M.D., Director of the NICHD. "If confirmed, this theory suggests that therapies emphasizing problem solving skills and other tasks that activate multiple brain areas at the same time might benefit people with autism."
People with autism typically have difficulty communicating and interacting socially with others. The old saying "unable to see the forest for the trees" applies to people with autism, describing how many of them excel at matters of detail, yet struggle to comprehend the larger picture. For example, some children with autism may become champions at spelling bees, but have difficulty understanding the meaning of a
sentence or a story.
Update: Better explanation of the study here
November 14, 2004
Your source for autism research information
This one is on research into the possibility that it is caused by brain inflamation stemming from a problem with the immune response in the nervous system.
Doctors closer to finding cause of autism
Better and Worse?
It had kinda slowed down, although he was still making small gains, then about two weeks ago, he got a bad cold. He is almost recovered now, but oddly, he has become more interactive, with better eye contact and even being flirtatious with us, but his speech has dropped way off. I am hoping that this is just one of those setbacks that every one says are commonplace, and that he will pick back up soon.
October 12, 2004
OT - What does a popsicle taste like?
October 9, 2004
Confirmation that Gluten is BAD
Chelation - Round Three
We have finished round three and he continues to improve. This week was one of new achievements and more engagement. Yesterday he was in my husband's office and saw his baseball hat on the floor. He said "hat" and picked it up and put it on his dad's head. This turned into a fun game for him. Each time he put it on his dad's head, he would look him in the eye and wait for dad to put it back on his own head.
He is starting to use words more spontaneously. He was sitting on a bench that swings for several minutes while it was still. Someone started pushing it and he looked her in the eye and said, "swing". When he plays with his trains, he says, "choo, choo". He has added about 10 words to his vocabulary just in the last 5 days.
Today was exciting for me. I took him to occupational therapy. He is not crazy about the mini trampoline in there and his OT has to put him on it and bounce him up and down while he stands there with his knees locked, blank expression, waiting for it to be over so he can get off. Today he saw it and got right on it and started jumping up and down like a crazy person, laughing his head off, saying, "jump, jump, jump...." I started crying. It is so great to see him behaving like a two year old.
October 4, 2004
So we haven't be able to get many good pictures of Chan for the last year, and I think I gave up and kinda put the camera in a drawer. So we got new cell phones with camera's in them, and surprise! Chandler is posing for the camera now!
Just a sample from this week.
October 1, 2004
Blessed are the meek
Autistic child's gift teaches lesson
about God's love; leads to church start
By George Henson
THORNDALE—Some people think the days of miracles are past, but Pastor Larry Griffith says he knows better. He’s seen God use a child’s toy to start a church.
Griffith took a step of faith when he prepared to travel to Brazil with Evangelist Sammy Tippit earlier this summer, leaving behind his pregnant wife.
“One of the hardest things I’ve ever had to do was get on that plane instead of staying with her,” Griffith said.
But he still felt God’s leading to go. He received confirmation as he said his good-byes to his two sons.
His oldest son, Dallas, is 9 years old. He also is autistic. His father says Dallas lives primarily in his own world, and the key components of that world are his little toy Hot Wheels cars.
“He is very possessive of his toy cars, and had his favorite one that he always kept with him—his security blanket—in his hand,” Griffith recalled.
While some autistic children are not very vocal, Dallas is. Dallas asked his father to bring him back a car from his trip.
“Part of the price you pay for being a preacher’s kid is that everything is a life lesson,” Griffith said. “So I preceded to tell him that I would try, but I wasn’t sure if I would be able to or not. And he should remember that in Brazil, the children were very poor, and many of them had never had even one car or any other toy.”
Dallas stood before his father for a few seconds and then held out the hand that held his most precious possession.
“He told me to give it to a boy in Brazil. My wife and I were dumbfounded and just stood there in tears.” Autistic children tend to be self-centered and reluctant to share, Griffith explained.
“We knew at that moment that God was up to something very special,” he said.
The flight from Texas to Sao Paulo, Brazil, was a long one, and all the way there, Griffith’s thoughts were drawn back to his son’s gift of his most prized possession.
“I began to see that as a picture of what God has done for us—the way he gave his son that we might have eternal life,” he said.
In Brazil, he preached at First Baptist Church in Jardra, and he recounted the story of his son’s gift. In the midst of telling that story and relating to the congregation how it was a picture of God’s love, he asked if a 9-year-old boy were present. A boy named Jefferson came to front. Griffith presented Jefferson with the first toy he ever possessed on behalf of his son, Dallas, who was giving the first gift he ever gave.
“The congregation just wept,” Griffith said.
After the service, four men said they had been impressed that they needed to share the story of God’s gift of love with people in a nearby neighborhood that had no church. One of the men owned a garage where he worked on cars and said it could serve as a church for the community.
The next day, Griffith and the four men went door-to-door through an impoverished neighborhood. The residents’ poverty had hardened their hearts toward God, he said.
“They said, ‘God doesn’t love me.’ But as we shared the story of Dallas’ gift and God’s gift of his Son, we would see hearts melt, and 27 people gave their hearts to Christ that first day,” Griffith recalled.
The men decided that with so many making professions of faith in Christ, the meetings in the garage could not wait until the next Sunday but needed to start that night. Each of the 27 who had made commitments to Christ was present.
Griffith and the men continued witnessing to the people and telling the story of a boy’s gift and how it mirrored God’s gift. By the end of the week, 131 people had made professions of faith in Christ.
When Sunday came, the garage overflowed with people.
“It was the most amazing thing I’ve every seen God do—start a church with an 88-cent car,” Griffith said.
The church in the garage still doesn’t have a name. Charter members have to go through paperwork and receive city approval before they have an official name. But unofficially, Griffith has his own name for the congregation.
“I call it First Baptist Church of Dallas.”
September 20, 2004
Chelation - Round One goes to the Challenger!
His eye contact is amazing, not quite what a regular child does, but now he is in the ball park. He will stand in front of Scott and I and look back and forth at each of us until one of us responds and pays attention to him.
I have set a few mental benchmarks for him so that when I saw them I would know that he was getting better. One was the first time he would call me "mommy" which he did in June, the first day that he was given DMSA as part of the "chelation challenge" to see if he had any metal poisoning. Another that he has yet to pass is the day he calls his big brother by name, as he has never referred to him with anything other than a shove or the occasional laugh.
This week we passed a benchmark when my boy did something I have been waiting six months to see. Friday at speech therapy he pointed to something! The therapist pointed to a tiny picture of a butterfly, and Chan pointed and said, "Bufry"! Sunday at church we were waiting for the elevator and he pointed to the floor number and said, "One".
Saturday, my mom bought him new shoes and he was kinda rolling up on his toes feeling them out. My mom and I started jumping and saying, "jump" and he watched both of us for a minute or two and then joined in. Looking at us straight in the eye and saying, "jump" with a big smile on his face!
Sunday morning we were driving to church and Scott and I started singing this song that plays on Noggin to our older son. Really simple song, "open, close, open, close. Up and down and up and down. Hot dog, Hot dog. Yum, yum, yum. Clap, clap, clap." When we stopped, Chandler started singing! "Haaa daaaa, haaaa daaaa. claaa, claaa, claaa." We were totally stunned so we sang the song again and he repeated it!!! I practically wet myself.
The list goes on and on. He is calling me "mommy" almost as much as "ma, ma" now. He runs to the kitchen at least once a day and asks for an "apple".
Yesterday were at a birthday party and there was a guy in a big bear costume and he said, "bear". He has been saying "bear" today. He was playing on the slide and would go to the top, look at me with huge eyes and a giant smile that very clearly communicated, "Hey mom! Look at me!", then slide down and do the same at the bottom. "Mom! Did you see what I did!" He did it over and over.
I have read that many parents are completely thrilled at what they see when they start chelation on their autistic children, but still didn't think I would be this excited. I have reminded to try to temper my expectations a bit in case he does not continue to improve this dramatically, or in case he has a set back, but right now it is hard not to get my hopes up that this is a sign that he might fully recover.
Praise God for the blessing that He brought us this week.
September 16, 2004
Chelation - day three
He was playing a video game that shows objects and then tells what color they are. Scott and I were watching tv and I saw him out of the corner of my eye really, out of his chair, wiggling around and babbling, and just thought he was being silly, but when I started paying attention, I realized that he was looking at both of us and saying, "per per", "per per", I looked at the screen and there was a purple cup.
He got out of his chair to get our attention to tell us it was purple!
A few minutes later both boys were fighting over the computer and pulling on dad and he was so busy trying to get the game back up so they would calm down, that he didn't even see Chandler. He was pulling on Scott's shirt, and crying with this look of desperation on his face of a normal child trying to get his dad to look at him, all the while saying, "da da, da da". Honest to God he was desperate for his dad to make eye contact with him. I have never seen that expression on his face before. I was totally surprised. Usually he would be that upset but looking at the thing he wanted fixed (which is what Scott was looking at). It was the difference between, "Daddy fix that", and "Daddy look at me".
I kept telling Scott to look down, but both boys were so loud he didn't hear me and Scott didn't see it at all.
September 14, 2004
Chelation - for real this time
Yesterday I didn't see anything new, but this morning he seems a bit different. He was dancing with Ernie and Burt this morning, copying them while they were doing their exercises. I have only seen him do that once before.
He came to get me to give him something more to eat after breakfast, and the usual routine is he comes to me in my chair, pulls on me and whines, say in place and encourage him to say "up", he starts crying and pulling harder, and either he eventually says "up" or I give in. Just now he came over, grabbed my hand looked me in the eye and just said "up". So we walked to the kitchen and as soon as he got to the gate he said, "apple". It was a more smooth transaction than normal. This, by the way, is the third day in a week that he has asked for an apple.
He just seems happy today. Not silly or laughing, just in a good mood.
September 11, 2004
Chelation - sort of
Something cool did happen though. Chandler was in the play room watching a vocabulary video, one of the words of the video being "apple". He came running out of the playroom and pulled me to the kitchen, looked at the apples and said, "apple". He has never asked for a specific food before. If you hold up a banana he will name it for you, but he has never asked for one. He ate the apple down and then dragged me to the kitchen and did it again.
I gotta go buy more apples.
September 7, 2004
Nystatin after two weeks
He responded pretty well for the first 5 days or so, coping with things better, not getting frustrated very easily, more eye contact with mommy. Then things took and a turn and he was back to where we started. I called the doc and he said to make sure he was not getting any sugar at all, so I went to the strictly organic baby food (only veggies) and water to drink. I even took him off his liquid vitamins because there was a bit of sugar in them. And he got better again. I found out that he had been successfully sneaking his brother's juice, so poor Web is now only drinking water in case he leaves it lying around.
He perked back up again for a few days. Then Web got sick. Then Chan got sick. Then Chan got a hold of his brother's breakfast while mom and dad were distracted and he got two pieces of toast. Now everyone is walking around the house whining and crying. Including mommy.
I am hoping that we can get these boys better, then get all the gluten out of Chandler's system, make sure the yeast is down, then start chelation.
You know when you are trying to run a marathon and some jerk runs out of the crowd and knocks you down? That sucks. I feel like that now.
I cry a lot.
August 26, 2004
Nystatin - Day 5
This morning when she got here, she said, "Chandler, let's go to the playroom", and he did! He ran straight in, even passing the TV, which was on, with out a glance.
He did that for me last night too. We were playing in the play room and I said, "ok Chandler, time for bed, let's go to the bedroom, and he ran straight in! First time in his life.
So, so proud of my boy.
Julia, his OT, says that his eye contact with her as not been as good in the last few weeks, including yesterday. I choose to believe that there are just to many cool things in the OT room that distract him. But then again, I also like to think that his autism is just a "phase" and he will snap out of it any day now. I love the smell of denial in the morning.
August 24, 2004
ugh... the whining...
And the un-funnist thing about yesterday? I heard a foreign sound in the kitchen and when I went in to see what was going on. I found that Chandler had climbed up to the counter and onto the stove. He was sitting on a gas burner trying to turn the knobs. I had a complete heart attack. My brother in law came over immediately with a temp barrier to the kitchen and we will be constructing a permanent one.
August 23, 2004
So he started on Nystatin two days ago. Yesterday he had a good day, said "help" for the first time when he wanted some wheels put back on his lego car, and today is pretty good, but I have not really seen any appreciable difference yet. Some parents report results with in days, I guess for some it takes months. We shall see.
I recently read that Dr. Jacquelyn McCandless, who knows about these things, says that she stopped using Nystatin with her young patients, because Diflucan worked much better in children. If this does not help him out, I will probably ask our doc to switch.
August 19, 2004
Day Thirty - The Review
So the final review on the Sensory Learning Center is that it was a big help to Chandler and well worth the time and money invested. By no means is it a cure for autism, but it has made life a lot better for Chandler and for the rest of the family.
Chandler is a happier little boy, he takes direction most of the time where as he almost never responded before, his speech has improved and he babbles much more, he is calmer and more compliant (I can get him dressed and change his diapers with out a fight now), he is more alert and taking in much more of the world, his sensory symptoms have been dramatically decreased and in some cases gone completely (no more flapping, he answers to his name about half the time, and his eye contact has improved dramatically.
I want to be clear that it has not made him "all better". He still has tantrums, but now they are like a tenth of the intensity and duration as before. He still likes to take off running in random directions when we are in public, but three out of four times now when I yell "stop", he does. He still likes to do the things he is not allowed to do, like climb up on the kitchen counter, but now it is obvious that he KNOWS that he is not allowed to do them, and acts guilty when he is caught, where as before he just kept right on doing things seemingly oblivious to our wishes.
This just seems to have lifted a large veil from him. He is happier and interacts with us more. He is just more present. I am really grateful that we found this program and took the risk.
From what I understand, the changes that Chandler has made are not unusual for the program, but are perhaps on the higher end of typical. I have not heard any parents give it a bad review, but I know that, as with all treatments for autistic kids, some responses are much better than others. I hope that keeping this blog is helpful to parents who are trying to figure out if the program is for them.
I also hear that some parents report continued improvements in their children up to three and four months after the program is over. I certainly hope that is the case with Chandler, but I won't be able to report anything objectively as we are jumping right into another treatment from here.
Next up Nystatin....
Saw this article today and thought I would pass it along.
August 16, 2004
Day Twenty Eight
Here is what is going on with my boy.
Two days ago, for the first time, he said his name. We were looking in the mirror and I was, for the millionth time, trying to get him to answer the big questions, "Whose that"? and he said, "Chandler". My boy said his name.
His eye contact and language is getting better. Today he added "Tri" for triangle to the shapes he can name (circle, square up until now), and this week he said his first color. Purple. This also marked the first time he has combined words in an original way. We were looking at the magenta light during one of his treatments, and he put his hand on it and said, "purple light". Up until now we have always called it "light" and had not ever referred to its color.
He is also saying DADDY really clearly now. We have suspected that he was saying daddy many times, but he was not really using it in a context or saying it clearly enough to make us sure that he was really saying daddy, but now we know.
Two of the coolest things for me in the past few days is the interaction we had a few nights ago. Chandler woke up in the middle of the night, which he NEVER does, so we gave him another light treatment. Well afterward he was completely wired and would not get back in bed and woke his brother up. So at 3am they were ready to party. I tried to just leave them in the room, but Chandler was wailing for me, so I came back to check on him, and each time I tried to leave, he got really upset. He usually is not that adamant about me staying in their room and before going to the center he could not care less if I was in the room. So I got in bed with him, and he put his head down on the pillow facing me, and we just gazed at each other and smiled. He just lay there looking at me in that loving way that kids do when they are so excited that mommy is laying in bed with them. Webster and I do that all the time, just lay on the pillow and smile and talk, and I have often thought about how sad it makes me that I might never have those moments with Chandler. And then God gave me one. It was really beautiful.
After a few minutes he got antsy and stood up on the bed and started playing with a toy. I said, "ok... if you are all done with me, mommy's going bye-bye", because I really was exhausted, and he grabbed my hand and pulled me back on the bed and lay back down on the pillow looking at me and smiling. This happened two or three more times.
Web was getting a bit jealous and wanted me to lay down with him, so when Chan got distracted with a toy again, I got up and went over and lay down with Webster. After about three minutes, apparently Chandler began to feel left out because he went to the foot of the bed and crawled up in between us, then sat down and looked at both of us as if to say, "hey guys, what are we talking about?". He was really making long eye contact with Web, more than he had ever done before, so I encouraged Web to talk to him and touch him. Chan was actually interested in Web and; looking him in the eye and listening to him. That went on for two or three minutes and then he went his way.
August 11, 2004
Day Twenty Two
He is just so silly.
August 9, 2004
Day Twenty One
Took Chandler to his occupational therapist today and she was excited about all the changes he had made. They have a huge ball pit that he hates going in. He was stiff an anxious and just wanted out. Today he went in on his own all smiles and laughter, giggled when he when she threw him around and even laughed when she burred him completely! He got in a little tub of beans and instead of just tolerating it, was thrilled and silly! She took him out of the little tub and brought him into the big sandbox full of beans so that he could really roll around in them and boy did he. It was great to see the contrast in him from before.
On the downside, today was the first time in three weeks he would not let me tolerate me changing his diaper. It could just be because he was pissed at me because I made him stop playing in the water outside and come in the house. Man I hope so because it was an ugly flashback to "before" and I never wanna see that again. Scott changed his diaper before bed and he was as sweet as pie. Probably just really annoyed with me.
August 6, 2004
Yesterday daddy let them run around naked in the back yard and play in the kiddy pool. Web stopped to relieve himself on a shrub which of course daddy thinks is cool (sigh... dads...). Two minutes later Chandler wandered over to the shrub and peed on the same spot, then he turned to smile at daddy as if to say, "hey look what I did".
I never thought I would be celebrating my son peeing in the back yard or being selfish with his toys, but is funny what you celebrate with an ASD child.
August 5, 2004
Yesterday started off great with Chandler feeding himself with a spoon. Then he fed himself half of his brothers peanut butter and jelly sandwich and he spent the rest of the day riding the gluten train! He just walked around the house crying until bed time. He is a bit better today, but not quite back to himself. Guess that confirms that the GFCF diet is working.
The one other cool thing that happened was that just before bed time I was sitting in the dining room talking with a friend and he came and got me. He took my hand and led me back into the bedroom where we do the sessions, climbed into the chair, and tried to turn the music on! I guess he had felt so bad all day he was craving a little peace.
He has done that three times today, and after the first time I had moved his car seat into the car so I could take them both to the store. He just climbed into the chair and sat the whole time. I just give him a drink and a bowl of snacks and he is good to go.
Today his floortime therapist came and she commented that he seemed calmer, more aware of what was going on around him, and was babbling much more. Go Chan!
August 4, 2004
I sat down to feed him his beloved Gerber bananas and berries and before I could get the spoon in his mouth, he took it away from me and did it himself. Then he just kept going. He did this once before, but it was more like playing, dipping the spoon in and then licking it for 5 minutes or so. He didn't actually get much food in him. This time he has finished almost the whole thing just since I sat down at the computer.
Mommy is happy.
I am also adjusting the set up a bit, I will take a picture of it tomorrow so you can see it.
Chandler is eating like a horse. He has been such a picky eater and was a bit on the small side, but he is starting to plump a bit. I dunno if it is the light or what, but he is constantly asking for food and eating things that he wouldn't have before this treatment started.
August 2, 2004
Well today Julia showed up at my house with a gift certificate to a spa and sent me off to get a rub down while she watched my boys. God has given us some wonderful friends.
So Godmommy Julia had some cool stories to tell when I got back. She said that he was almost a different kid from the one she knows. She gave him some chips and he said, "thank you" (Scott was there to verify that one).
She was putting in the Monsters Inc. DVD and could not figure out how to get it to work. He stood behind her repeating, "Go." every 15 seconds or so. When she got it working, she turned and gave him two thumbs up and he flashed a huge smile at her.
And the bestest thing that happened while I was gone. He was watching TV and heard a car door close outside, so he turned to look out the window and said, "Ma". He was looking to see if I was home!!!
Last winter I started to worry that Chandler was autistic, but told myself not to be paranoid and decided that if his speech had not improved by his second birthday, I would start investigating it further. A week before his birthday, Julia was over and very gently brought up her concern that he might need some "extra help with some of the things". I could tell that she was talking around the word "autism" and I thought, "dammit, now someone else suspects it too". So I pretty much knew there that if I put it off dealing with it any longer I was just in huge denial.
Julia's most personal comment to me at the time was that she really wanted to have a relationship with her god son and that he had rarely even looked at her. So today it was really exciting to hear about all the smiles and eye contact and actual words that the two exchanged. It was a real benchmark of how far he has come.
Chandler answers to his name now almost all the time. Before the treatment, it was about 1/3 of the time, but now I am starting to take for granted that he will look at me when I call his name and actually get annoyed if he doesn't. Before this week, I always just assumed that he wouldn't look at me if I called his name and it was a nice surprise if he did.
August 1, 2004
Day Thirteen - First at home
I have a more specific description of his facial expressions. Hold on, this may sound odd, but... his eyes are bigger. I look at him now and every time I do I think, "what big beautiful eyes he has these days". I don't know if he is just opening them wider and actually looking at the world or what, but his eyes are bigger.
This morning we went to church as usual, but it was not as usual. It has NEVER been this easy to manage him at church. I unclipped his buckle from his car seat and he did the rest. He walked where I told him to and held my hand when I took it to walk down the street. It was completely struggle free and usually by the time I have him dropped off and get to Sunday school myself, I am trying to calm myself down and cool off from all the sweatin' I do trying to move him from A to B. I am really happy.
July 31, 2004
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.
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
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
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
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.
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
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
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
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
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
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
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
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
I won't go into describing the treatment, but you can find all about it here:
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 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