Charlie is officially the busiest toddler I know. ABA therapy started this week, and we have run the little man ragged. (He fall asleep at 6:20 this evening. We had no success in trying to wake him for dinner, he was out cold. Hopefully he won't wake up at 4:00 a.m.!) Charlie will be receiving 10 hours of ABA therapy a week. In the world of ASD, this is actually not a lot of ABA hours. Many children go for 20 + hours a week. However, this was the number of hours the owner suggested to us, so hopefully she thinks this is sufficient at least for now. Charlie's weekly schedule looks like this:
Monday: ST 1:30-2:30 (starts June 1)
OT: 2:30-3:30
Tuesday: ABA: 8:00 - 12:00
Wednesday: ABA: 8:00 - 10:00
Thursday: ABA: 8:00 - 12:00
ST: 3:00 - 4:00
OT: 4:00 - 5:00
Friday: Music Class 10:30 - 11:15 (starting June 12)
Saturday: Swimming lessons
Sunday: Soccer (starting June 14)
Somehow, come August, we are supposed to mix school into this equation. Whew. Speaking of school, Adam and I are really brainstorming over the best fit for Charlie for next year. We had been planning on either continuing on at the JCC, which is a great pre-school, or the public pre-school EELP program. In Florida, starting at 3, children with disabilities and developmental delays can go into the public pre-school program. The school system will do an evaluation to determine what services the child needs, then sit down with the parents and develop an IEP to map out the services and education plan for the child for the year. There are 2 options in the public school system here -- a spectrum class, or the EELP class. The spectrum class, from what I am told, is kids on the spectrum (hence, the name). From what I have been told, it usually includes more severely autistic children, many of whom may be non-verbal. Charlie's occupational therapist does not think a spectrum class would be a good fit for him. She believes he would be one of the highest functioning and, therefore, would not get much out of it. Not to mention, he would be observing some severe children with severe behavioral issues and may start immitating the behaviors. Numerous people, therapists and other parents, have told me if we go the public school route to push for the EELP program. The EELP program is a shmorgasboard of children with varying diagnoses. There are some good EELP programs, then there are some that are basically glorified babysitting. You don't know what you're going to get until you get there. Unfortunately, they won't allow me to observe an EELP class at our local elementary school until they have already started evaluating Charlie.
On the recommendation of a number of people, including Dr. Carnavale, Adam and I (and the kids) toured Sydney's School for Autism this week. It is the only school in Tampa servicing pre-school autistic children. Frankly, I went in with fairly low expectations. I thought it was autistic children only, but was highly surprised to learn, over half of the children are non-autistic (or neuro typical). This was a huge plus to me. They have a regular pre-school curriculum that is age appropriate for the children. The school provides ABA therapy which the autistic children receive every day, approximately 5 hours a day (some of this is 1:1, some in a group setting). Also, each autistic child has an aide to help them through the day to keep them on focus and involved with the class. Speech therapy is provided through the local school district and there is also some play therapy and music therapy included. There is not traditional OT, but there are elements of OT included as well. However, what impressed me the most is that each autistic child is paired with a non-autistic child to play and interact with througout the day. They work with the non-autistic child to initiate play and socialization with the autistic child. I have to admit, I absolutely LOVE this concept. Through none of his other therapies will Charlie receive socialization like this, in a NATURAL setting with a CHILD HIS OWN AGE. ABA, OT and ST are great, and are needed, but, just as important, if not more, is socialization.
As Adam can tell you, I have been very on edge this entire week. I admit, I have been feeling pretty down this week. We have just been so busy arranging all of Charlie's therapies that I have not put a lot of thought into the socialization aspect of autism. I knew it was a concern, but for some reason, this week it hit me hard. I have been reading a lot about this, and think it is every bit as important as all of the other therapies Charlie is already doing. In fact, really it's more important as this, more than anything, will affect his lifetime happiness and ability to make his way in this world. I know that many autistic people find socialization very stressful and challenging. I believe we have to start NOW working on these skills. Yes, Charlie is only 3, but this is the critical time in his development where he is the most influenced by observing and imitating his peers. Right now, Charlie has very little to do with other children except for those he knows very well. Even then, he'll get excited to see them and will talk about them at home, but when he is with them, he does not interact with them. Even today at swim lessons I observed him as he repeatedly put distance between himself and the boy sitting next to him. The instructor kept scooting him back over to sit side by side, and Charlie would inevitably scoot back in the other direction. He even turned his back towards the boy on a few occasions. He has been doing this since we started at this swim school. Also, today at the park, a very social little boy got too close and Charlie got angry and pulled his hair. (Thankfully, not very hard and the little boy didn't even cry, but it is plain to see that social situations are stressful for Charlie sometimes.) The socialization therapy that Sydney's offers is very enticing and has me very interested so much, in spite of the absolutely astronomical tuition the school charges.
We still have a lot to think about, but we are considering Sydney's very seriously. When I first suspected Charlie had autism, THIS is what worried me so much. I was not very concerned about his academic future as much as his social one. I just don't want him growing up isolated with no friends. I am reading a book now about behavioral interventions for autistic children. The longest chapter in the book discusses working on social skills. The author discusses how many austitic children sit alone at lunch, are alone at recess and any other "free time" in the classroom. They report interest in joining groups of children, but don't know how to do it or are too afraid to try. I just can't stand this thought without knowing we tried everything we could for Charlie. I just want him to be happy. I don't care about the rest, that will come in due time.
To that end, we signed Charlie up for soccer at the local YMCA. His "games" (if you can call it that for a 3 year old) will start in June. Team sports are good for him right now. We also signed Charlie and Addison up for music classes this summer at one of the local children gyms in our area. Charlie and Addison both love music and dancing, so hopefully they will enjoy this. They get to play instruments and dance in the class. I figure it's another form of music therapy. We are also strongly considering signing up Charlie for karate classes. There is a school in Tampa that has classes just for autistic and special needs children. I have read a lot about martial arts and autism. In fact, there was an article in last week's paper about a little boy who is autistic and has just blossomed after taking a year of Tae Kwon Do classes. I am a big believer in martial arts, having trained in it myself. I was actually in the process of exploring classes for Charlie before autism even entered the picture. Autistic people often flourish in martial arts because it is structured and they can gain a real sense of self-esteem and confidence. Also, it is an extension of OT as it exercises every muscle group and in children's classes, they often do obstacle courses and other fun games to help with hand-eye coordination.
I know, you read all this and think, they are running that poor boy ragged. I even worry about that. But, I think in this instance, we have to maximize every possible potential. The more that Charlie is out there participating in the world, the better. I am trying to pick activities he really likes. He likes sports, particulary kicking and throwing balls, so hopefully soccer will be a hit. He loves music and it really seems to relax him, so the music class was a no-brainer. I think, given some time, he could really learn to like karate as well.
Adam and I will have to think very hard about school options for next year and go with what we think is best for Charlie.
On a positive note, Charlie did very well in his first week of ABA. After his second day of ABA, he came up to me and said "Want a prune." He used to request quite frequently, but now it is rare. And yes, he likes prunes. . . in fact, loves them. He also filled in the spaces of the alphabet sone with me as well as Take Me Out to the Ballgame. Of course, autism is so frustrating because he did this for me on Wednesday, but then would not do it the following day. Every day is different.
It struck me this evening that we are really only about 2 months into this. Charlie was just formally diagnosed this month on May 4. Although I strongly suspected it at his birthday party in April, it really wasn't until the following week that I was sure of it and right around then is when we started the GFCF diet. Boy, how things have changed in a very short amount of time. I feel like it has been much longer, probably because we have been so busy. I do feel like Charlie's receptive language skills are better. He does not space out as bad and you usually only have to say his name once to get his attention. He also usually listens to instructions after only being told one time. His eye contact is also better. He still flaps his hands, but it may have decreased somewhat. His finger flapping (or hand puppets) have definitely decreased. He still has visual stims where he puts his fingers up to his eyes and wiggles them or looks at his fingers out of the corners of his eyes. He has also started mouthing objects a lot lately. For about 1 1/2 weeks he started a really nasty habit of sticking his hands down the back of his pull-up. We got on him about this one and told him to take his hand out. Thankfully, he listened well and now is not doing it very much. He does seem to be slightly more aggravated and has had some aggression towards his sister and others. It's like he just gets overloaded with noise and has a sudden burst of temper, grabs someone and squeezes, and then it's over almost as soon as it started. I do give him a grilling every time he pushes his sister or pulls her hair. He is in for a world of hurt when that girl gets a little older and whacks him back. I think she's going to be a pistol.
I am hoping this week brings a little more peace for me. I have to work at not feeling so edgy and try to not let my mind wander too much. We just need to pick a path and go with it, then trust that it will all work out.
Saturday, May 30, 2009
Monday, May 25, 2009
The DAN! Doctor
Whew -- what a week! I am mentally and physically exhausted from it. Thank goodness today was a holiday so we had an extra day to recover.
I got a call on Wednesday afternoon that the DAN! doctor (the only one in Tampa) had a cancellation on Thursday and therefore had an unexpected opening. I jumped up for joy! Originally, we could not get in to see him until October so this was a nice surprise. Being the only DAN!/autism biomedical doctor in the area, his schedule stays pretty full. Needless to say, we jumped on the appointment and went to see him on Thursday. Unfortunately, Charlie was quite tired after his last day of preschool party and running around with me. So, he was definitely on the crabby side when we got to the doctor's office. . . and Miss Addison just wanted to stay in the waiting room with all of the fun toys and movies. I thought they were going to kick us out before we even had a chance to meet with the doctor.
Dr. Berger (or Dr. David as he likes to be called) was very nice and very thorough. He asked lots of questions about Charlie's medical background and his behaviors. We discussed his current supplements, all of which he approved. He did want Charlie to start having nightly Epsom Salt baths with 2 cups of Epsom salt (we were previously doing every other night with 1 cup of Epsom Salts). He also wants us to increase the Cod Liver Oil to 2 tsps a day (we have been doing 1 tsp). He ordered some tests for Charlie, an Organic Acid Test (or OAT test -- this is a urine test) and a comprehensive stool analysis to test for bacteria, yeast, etc. From what I have read, these are the standard initial tests. In fact, I had already ordered some kits from Great Plains laboratory and planned on sending the samples in myself per the 12 week action plan on autismactionplan.org. Dr. Berger and I also discussed Methyl B-12 shots. I have been reading about this a lot. It is a very popular treatment for ASD, and is very safe. Parents are reporting lots of improvements, including increased language, better eye contact and awareness. I admit I am a little nervous about giving Charlie shots, but when he showed me the needle and explained the process to me, it really seems pretty easy and harmless. The needle is so small, and you give them the shot in the fatty part of the buttock so most kids don't feel it or feel very little. In fact, on one of my yahoo groups, the parents report they give their kids the shots at night and they don't even wake up. If there is a pain issue, there is some numbing cream you can apply before the shot so the child won't even feel it. The goal is to inject into the fat area as this will allow for slow absorption over three days as opposed to injecting into the muscle where the entire amount would be "used up" by the body within a day. Charlie will start out getting one shot every three days. The pharmacy will ship them to us this week (they come all ready to go, you just refrigerate and bring to room temp before administering), so we'll likely start the shots this weekend. We have a follow up with the doctor in late June when the lab results should be in and we can make some determinations about treating for yeast and whatever else the labs may show.
For information about Methyl-B12, check out Dr. Neubrander's site at http://www.drneubrander.com/dev/index.html. Dr. Neubrander pioneered the use of Methyl B-12 as a biomedical treatment for autism and is a big force behind HBOT treatment as well, which also has rave reviews but is extremely expensive. Methyl-B12 is very safe since it is a water soluble vitamin, and therefore, any excess in the body is eliminated through urine. Another plus is that it's only $3 per shot, so pretty reasonable, and as Dr. Berger said, a great place to start biomedical treatment.
Charlie has been doing well. He has had some more bursts of temper, but they are quick and usually over almost as soon as they start. He has been very frustrated the last few days because Adam and I have been making him use his words to request things. He has gotten into the habit of just reaching up and taking things. We try to make him say what he wants and/or hold up the item and model the word first for him to repeat. Sometimes he says the word, sometimes he doesn't. This is an exercise in patience for me. It is extremely frustrating because I know he KNOWS what the word means, and I know he can say the word. . . it's like he can't get the word out at times or just doesn't get the whole idea of requesting or using words for communication. He continues to be echolaliac, but he does use it in the right context on many occasions. For example, the other day we were talking with our neighbors and Adam left to go get something to drink. Charlie got a little upset to see his daddy walk away and said to himself "He'll be right back." Of course this is what I have said to him before, but he often does this, where he will repeat the phrase in the right context. This leads me to believe that he does understand the words and what is being said to him. It will be interesting to see how this resolves when he starts ABA therapy . . . which he starts tomorrow! He will be in therapy for 4 hours tomorrow. Whew!
I just finished reading Temple Grandin's book Thinking in Pictures. This was much better than her first book Emergence and is a fascinating read into her mind as a person living with autism. She discusses in detail how she is a visual thinker, explaining her virtual DVD catalog of memories and how she can rotate something, move parts, etc in her mind. She does not think in language, but in pictures. She has a hard time understanding non-autistic verbal thinkers and how they can't "see" what she sees in blueprints and construction. She practices everything in her mind and designs all of her livestock equipment in her head. She can rotate the picture and see every angle of the equipment in her brain. She also remembers things in pictures. She also discusses her sensory issues and a lot of the sensory problems ASD people have, as well as their issues with socialization. She had to be taught social cues as she was oblivious to these with the one exception of tone of voice. She also had to be taught right from wrong and keeps lists in her mind of everything she has learned so now she can function socially. It is an absolute must read in my opinion for anyone who knows or has a loved one on the spectrum. I don't know if Charlie is a visual thinker yet or a math/musical thinker. . . or what is going on in his beautiful little head, but Grandin explains that all autistic people learn by association. It is things like this that will hopefully help us to identify and appreciate our little boy.
This article was posted on one of the yahoo groups I am a member of. I really love it as too many times, the negative aspects of autism are the focus. These are all traits for which everyone of us should aspire.
Top 10 Terrific Traits of Autistic People
If you're sick of hearing about all the "deficits" challenging people on the autism spectrum, join the club. But for every down side to autism, there seems to be a positive -- an unusual trait that rarely appears among the "typical" community, but shines out among autistic folk. These plusses are well worth celebrating.
1. Autistic People Rarely Lie
We all claim to value the truth, but almost all of us tell little white lies. All, that is, except people on the autism spectrum. To them, truth is truth -- and a good word from a person on the spectrum is the real deal.
2. People on the Autism Spectrum Live in the Moment
How often do typical people fail to notice what's in front of their eyes because they're distracted by social cues or random chitchat? People on the autism spectrum truly attend to the sensory input that surrounds them. Many have achieved the ideal of mindfulness.
3. People with Autism Rarely Judge Others
Who's fatter? Richer? Smarter? For people on the autism spectrum, these distinctions hold much less importance than for typical folks. In fact, people on the spectrum often see through such surface appearances to discover the real person.
4. Autistic People are Passionate
Of course, not all autistic people are alike. But many are truly passionate about the things, ideas and people in their lives. How many "typical" people can say the same?
5. People with Autism Are Not Tied to Social Expectations
If you've ever bought a car, played a game or joined a club to fit in, you know how hard it is to be true to yourself. But for people with autism, social expectations can be honestly irrelevant. What matters is true liking, interest and passion -- not keeping up with the Joneses.
6. People with Autism Have Terrific Memories
How often do typical people forget directions, or fail to take note of colors, names, and other details? People on the autism spectrum are often much more tuned in to details. They may have a much better memory than their typical peers for all kind of critical details.
7. Autistic People Are Less Materialistic
Of course, this is not universally true -- but in general, people with autism are far less concerned with outward appearance than their typical peers. As a result, they worry less about brand names, hairstyles and other expensive but unimportant externals than most people do.
8. Autistic People Play Fewer Head Games
Who was that woman, and why were you looking at her? I know I TOLD you I didn't mind if you went out, but why did you believe me? Most autistic people don't play games like these -- and they assume that you won't either. It's a refreshing and wonderful change from the Peyton Place emotional roller coaster that mars too many typical relationships!
9. Autistic People Have Fewer Hidden Agendas
Most of the time, if a person on the autism spectrum tells you what he wants -- he is telling you what he wants. No need to beat around the bush, second guess, and hope you're reading between the lines!
10. People with Autism Open New Doors for Neurotypicals
For some of us neurotypicals, having an autistic person in our lives has had a profound positive impact on our perceptions, beliefs and expectations. For me, at least, being the mom of a son on the autism spectrum has released me from a lifetime of "should" -- and offered me a new world of "is."
"I know of nobody who is purely Autistic or purely neurotypical. Even God had some Autistic moments, which is why the planets all spin." ~ Jerry Newport
I got a call on Wednesday afternoon that the DAN! doctor (the only one in Tampa) had a cancellation on Thursday and therefore had an unexpected opening. I jumped up for joy! Originally, we could not get in to see him until October so this was a nice surprise. Being the only DAN!/autism biomedical doctor in the area, his schedule stays pretty full. Needless to say, we jumped on the appointment and went to see him on Thursday. Unfortunately, Charlie was quite tired after his last day of preschool party and running around with me. So, he was definitely on the crabby side when we got to the doctor's office. . . and Miss Addison just wanted to stay in the waiting room with all of the fun toys and movies. I thought they were going to kick us out before we even had a chance to meet with the doctor.
Dr. Berger (or Dr. David as he likes to be called) was very nice and very thorough. He asked lots of questions about Charlie's medical background and his behaviors. We discussed his current supplements, all of which he approved. He did want Charlie to start having nightly Epsom Salt baths with 2 cups of Epsom salt (we were previously doing every other night with 1 cup of Epsom Salts). He also wants us to increase the Cod Liver Oil to 2 tsps a day (we have been doing 1 tsp). He ordered some tests for Charlie, an Organic Acid Test (or OAT test -- this is a urine test) and a comprehensive stool analysis to test for bacteria, yeast, etc. From what I have read, these are the standard initial tests. In fact, I had already ordered some kits from Great Plains laboratory and planned on sending the samples in myself per the 12 week action plan on autismactionplan.org. Dr. Berger and I also discussed Methyl B-12 shots. I have been reading about this a lot. It is a very popular treatment for ASD, and is very safe. Parents are reporting lots of improvements, including increased language, better eye contact and awareness. I admit I am a little nervous about giving Charlie shots, but when he showed me the needle and explained the process to me, it really seems pretty easy and harmless. The needle is so small, and you give them the shot in the fatty part of the buttock so most kids don't feel it or feel very little. In fact, on one of my yahoo groups, the parents report they give their kids the shots at night and they don't even wake up. If there is a pain issue, there is some numbing cream you can apply before the shot so the child won't even feel it. The goal is to inject into the fat area as this will allow for slow absorption over three days as opposed to injecting into the muscle where the entire amount would be "used up" by the body within a day. Charlie will start out getting one shot every three days. The pharmacy will ship them to us this week (they come all ready to go, you just refrigerate and bring to room temp before administering), so we'll likely start the shots this weekend. We have a follow up with the doctor in late June when the lab results should be in and we can make some determinations about treating for yeast and whatever else the labs may show.
For information about Methyl-B12, check out Dr. Neubrander's site at http://www.drneubrander.com/dev/index.html. Dr. Neubrander pioneered the use of Methyl B-12 as a biomedical treatment for autism and is a big force behind HBOT treatment as well, which also has rave reviews but is extremely expensive. Methyl-B12 is very safe since it is a water soluble vitamin, and therefore, any excess in the body is eliminated through urine. Another plus is that it's only $3 per shot, so pretty reasonable, and as Dr. Berger said, a great place to start biomedical treatment.
Charlie has been doing well. He has had some more bursts of temper, but they are quick and usually over almost as soon as they start. He has been very frustrated the last few days because Adam and I have been making him use his words to request things. He has gotten into the habit of just reaching up and taking things. We try to make him say what he wants and/or hold up the item and model the word first for him to repeat. Sometimes he says the word, sometimes he doesn't. This is an exercise in patience for me. It is extremely frustrating because I know he KNOWS what the word means, and I know he can say the word. . . it's like he can't get the word out at times or just doesn't get the whole idea of requesting or using words for communication. He continues to be echolaliac, but he does use it in the right context on many occasions. For example, the other day we were talking with our neighbors and Adam left to go get something to drink. Charlie got a little upset to see his daddy walk away and said to himself "He'll be right back." Of course this is what I have said to him before, but he often does this, where he will repeat the phrase in the right context. This leads me to believe that he does understand the words and what is being said to him. It will be interesting to see how this resolves when he starts ABA therapy . . . which he starts tomorrow! He will be in therapy for 4 hours tomorrow. Whew!
I just finished reading Temple Grandin's book Thinking in Pictures. This was much better than her first book Emergence and is a fascinating read into her mind as a person living with autism. She discusses in detail how she is a visual thinker, explaining her virtual DVD catalog of memories and how she can rotate something, move parts, etc in her mind. She does not think in language, but in pictures. She has a hard time understanding non-autistic verbal thinkers and how they can't "see" what she sees in blueprints and construction. She practices everything in her mind and designs all of her livestock equipment in her head. She can rotate the picture and see every angle of the equipment in her brain. She also remembers things in pictures. She also discusses her sensory issues and a lot of the sensory problems ASD people have, as well as their issues with socialization. She had to be taught social cues as she was oblivious to these with the one exception of tone of voice. She also had to be taught right from wrong and keeps lists in her mind of everything she has learned so now she can function socially. It is an absolute must read in my opinion for anyone who knows or has a loved one on the spectrum. I don't know if Charlie is a visual thinker yet or a math/musical thinker. . . or what is going on in his beautiful little head, but Grandin explains that all autistic people learn by association. It is things like this that will hopefully help us to identify and appreciate our little boy.
This article was posted on one of the yahoo groups I am a member of. I really love it as too many times, the negative aspects of autism are the focus. These are all traits for which everyone of us should aspire.
Top 10 Terrific Traits of Autistic People
If you're sick of hearing about all the "deficits" challenging people on the autism spectrum, join the club. But for every down side to autism, there seems to be a positive -- an unusual trait that rarely appears among the "typical" community, but shines out among autistic folk. These plusses are well worth celebrating.
1. Autistic People Rarely Lie
We all claim to value the truth, but almost all of us tell little white lies. All, that is, except people on the autism spectrum. To them, truth is truth -- and a good word from a person on the spectrum is the real deal.
2. People on the Autism Spectrum Live in the Moment
How often do typical people fail to notice what's in front of their eyes because they're distracted by social cues or random chitchat? People on the autism spectrum truly attend to the sensory input that surrounds them. Many have achieved the ideal of mindfulness.
3. People with Autism Rarely Judge Others
Who's fatter? Richer? Smarter? For people on the autism spectrum, these distinctions hold much less importance than for typical folks. In fact, people on the spectrum often see through such surface appearances to discover the real person.
4. Autistic People are Passionate
Of course, not all autistic people are alike. But many are truly passionate about the things, ideas and people in their lives. How many "typical" people can say the same?
5. People with Autism Are Not Tied to Social Expectations
If you've ever bought a car, played a game or joined a club to fit in, you know how hard it is to be true to yourself. But for people with autism, social expectations can be honestly irrelevant. What matters is true liking, interest and passion -- not keeping up with the Joneses.
6. People with Autism Have Terrific Memories
How often do typical people forget directions, or fail to take note of colors, names, and other details? People on the autism spectrum are often much more tuned in to details. They may have a much better memory than their typical peers for all kind of critical details.
7. Autistic People Are Less Materialistic
Of course, this is not universally true -- but in general, people with autism are far less concerned with outward appearance than their typical peers. As a result, they worry less about brand names, hairstyles and other expensive but unimportant externals than most people do.
8. Autistic People Play Fewer Head Games
Who was that woman, and why were you looking at her? I know I TOLD you I didn't mind if you went out, but why did you believe me? Most autistic people don't play games like these -- and they assume that you won't either. It's a refreshing and wonderful change from the Peyton Place emotional roller coaster that mars too many typical relationships!
9. Autistic People Have Fewer Hidden Agendas
Most of the time, if a person on the autism spectrum tells you what he wants -- he is telling you what he wants. No need to beat around the bush, second guess, and hope you're reading between the lines!
10. People with Autism Open New Doors for Neurotypicals
For some of us neurotypicals, having an autistic person in our lives has had a profound positive impact on our perceptions, beliefs and expectations. For me, at least, being the mom of a son on the autism spectrum has released me from a lifetime of "should" -- and offered me a new world of "is."
"I know of nobody who is purely Autistic or purely neurotypical. Even God had some Autistic moments, which is why the planets all spin." ~ Jerry Newport
Wednesday, May 20, 2009
Another possible diagnosis?!?
We've been busy here in Tampa. . . .but what else is new? :) We had a nice weekend. Charlie seems very happy and content with less tantrums, not that tantrums were ever a big deal for us (thank goodness). He does continue to get annoyed with his sister from time to time when she is loud (which is pretty often), and we've had to scold him for pulling her hair a few times. But, over all he seems more laid back with her the last couple of days. Now he just scowls and gives her a funny look when she is being loud or when she is bothering him. Yesterday, he even went up and hugged her (and not a bear hug) and almost kissed her on the head. Very sweet.
Although Charlie has been in a happy mood, we did see a lot of stimming this weekend -- more spinning, walking in circles, pacing, finger dancing and toe walking. He's also been mumbling a lot more, but we've also seen more language which is good. This weekend during a thunderstorm he said "hear the thunder" and has requested apple juice and water. He still tries to get everything himself without asking first. We are working hard to make him use his words to request and not just attempt to get everything himself. He has even taken to climbing up on the bar stools and almost crawling on top of the kitchen counter to get to cups of ice water he wants.
On a funny note, we have learned that Charlie absolutely LOVES the song Viva la Vida by Coldplay. I have it downloaded on my Ipod. When you turn that song on, Charlie will come running and dance to it. He loves a lot of music, but that song in particular seems to be his favorite.
Speaking of things my kids love, my daugther has become a shoe freak!! She absolutely loves to wear her shoes and will bring them to you yelling "shoes! shoes!" She even tries to put them on herself and has now taken to bringing me socks and trying to get the socks on my feet. It's pretty adorable if I say so myself. . . although it makes me nervous for our financial future to have a possible shoe fanatic in the making.
I stumbled across a VERY useful website a few days ago called autismactionplan.org. It is a website run by a DAN! doctor, Dr. Kurt Woeller, in California with a very good reputation. This is a great resource. It is almost like having a DAN! doctor in your living room with you. Once you join, you get access to all of his materials on the site, including a 12 week action plan for biomedical interventions, doctor-parent chat forums where he answers questions about symptoms, supplements, dosages, etc, information regarding lab testing, etc. He even has weekly web video chats where you can chat with him live, type in your questions and he answers right there on the spot. I participated in a live chat on Monday night, and it was extremely helpful. He answered my questions about supplements and tests and numerous other parents' questions. I am so glad I found this site as I now have a resource with experience, at least until I can get in with the DAN! doctor here in Tampa. We have an appointment with him in October.
Yesterday Charlie had an appointment with the neurologist. The developmental pediatrician recommended we go see a neurologist since Charlie's regression was later than average. They did an EEG (which came back normal). Of course Charlie did not like getting all of the electrodes stuck to his head and being held down by a strange woman. He protested pretty forcefully, but then I was able to hold him and rock. He calmed down right away and did quite nicely for the remainder of the test. The neurologist really didn't add much to our treatment plan in my opinion. In fact, at first she irritated me quite a bit. She spent 5 minutes in the room with us, saw that Charlie had been diagnosed in the mild-moderate category and said she would consider him more in the moderate category. Then she saw that he does readily listen to and comply with instructions and obviously understand what is being said to him. He also repeated a couple words back to her. At that point she said he was probably more mild than she had originally thought. She did suggest the GF/CF diet and a multivitamin (we are already doing this). She also said to make sure he is getting enough iron and she also highly recommended magnesium. I had just ordered some magnesium from New Beginnings a few days before this appointment, and we have been doing Epsom salt baths, which do seem to be quite calming. She also recommended melatonin if we are having a lot of troubles with sleeping. Charlie does have some issues in this area, but I think they are getting better so I am going to hold off on the melatonin for a little while. He also had his blood drawn to test for heavy metals and CBC. I'm not sure how useful this will be as I have read that blood testing for heavy metals is the least accurate mode of testing, but I guess it's a starting point.
At the end of the appointment, she handed me a paper and said it is possible that Charlie has MSDD (multi-sensory developmental disorder) instead of autism. I had never heard this term before. The symptoms are VERY similar to autism and MSDD kids exhibit many of the same behaviors and sensory problems as ASD kids. The only real difference noted was that MSDD kids tend to respond better to therapy and do no have the same level of cognitive impairment as ASD kids. Their tendency to avoid social interaction or to withdraw stems more from unpleasant sensory experiences rather than a lack of interest in others. This does make me wonder about Charlie because he often does seem interested in other people and can be very social at times. We really have no way of knowing at this point whether he could be considered MSDD, and it does not matter as the therapies and interventions are all the same.
Charlie is doing great on his supplements so far (multivitamin, CLO, calcium and probiotics). The probiotics seem to have really helped his tummy and, thankfully, don't seem to have any taste as he gobbles them up in fruit, applesauce, juice no problem -- can't say the same for the multivitamin in the taste category. We'll start the calcium plus magnesium next, then we'll supplement with a little extra zinc and an anti-oxidant supplement which Dr. Woeller recommends.
Although Charlie has been in a happy mood, we did see a lot of stimming this weekend -- more spinning, walking in circles, pacing, finger dancing and toe walking. He's also been mumbling a lot more, but we've also seen more language which is good. This weekend during a thunderstorm he said "hear the thunder" and has requested apple juice and water. He still tries to get everything himself without asking first. We are working hard to make him use his words to request and not just attempt to get everything himself. He has even taken to climbing up on the bar stools and almost crawling on top of the kitchen counter to get to cups of ice water he wants.
On a funny note, we have learned that Charlie absolutely LOVES the song Viva la Vida by Coldplay. I have it downloaded on my Ipod. When you turn that song on, Charlie will come running and dance to it. He loves a lot of music, but that song in particular seems to be his favorite.
Speaking of things my kids love, my daugther has become a shoe freak!! She absolutely loves to wear her shoes and will bring them to you yelling "shoes! shoes!" She even tries to put them on herself and has now taken to bringing me socks and trying to get the socks on my feet. It's pretty adorable if I say so myself. . . although it makes me nervous for our financial future to have a possible shoe fanatic in the making.
I stumbled across a VERY useful website a few days ago called autismactionplan.org. It is a website run by a DAN! doctor, Dr. Kurt Woeller, in California with a very good reputation. This is a great resource. It is almost like having a DAN! doctor in your living room with you. Once you join, you get access to all of his materials on the site, including a 12 week action plan for biomedical interventions, doctor-parent chat forums where he answers questions about symptoms, supplements, dosages, etc, information regarding lab testing, etc. He even has weekly web video chats where you can chat with him live, type in your questions and he answers right there on the spot. I participated in a live chat on Monday night, and it was extremely helpful. He answered my questions about supplements and tests and numerous other parents' questions. I am so glad I found this site as I now have a resource with experience, at least until I can get in with the DAN! doctor here in Tampa. We have an appointment with him in October.
Yesterday Charlie had an appointment with the neurologist. The developmental pediatrician recommended we go see a neurologist since Charlie's regression was later than average. They did an EEG (which came back normal). Of course Charlie did not like getting all of the electrodes stuck to his head and being held down by a strange woman. He protested pretty forcefully, but then I was able to hold him and rock. He calmed down right away and did quite nicely for the remainder of the test. The neurologist really didn't add much to our treatment plan in my opinion. In fact, at first she irritated me quite a bit. She spent 5 minutes in the room with us, saw that Charlie had been diagnosed in the mild-moderate category and said she would consider him more in the moderate category. Then she saw that he does readily listen to and comply with instructions and obviously understand what is being said to him. He also repeated a couple words back to her. At that point she said he was probably more mild than she had originally thought. She did suggest the GF/CF diet and a multivitamin (we are already doing this). She also said to make sure he is getting enough iron and she also highly recommended magnesium. I had just ordered some magnesium from New Beginnings a few days before this appointment, and we have been doing Epsom salt baths, which do seem to be quite calming. She also recommended melatonin if we are having a lot of troubles with sleeping. Charlie does have some issues in this area, but I think they are getting better so I am going to hold off on the melatonin for a little while. He also had his blood drawn to test for heavy metals and CBC. I'm not sure how useful this will be as I have read that blood testing for heavy metals is the least accurate mode of testing, but I guess it's a starting point.
At the end of the appointment, she handed me a paper and said it is possible that Charlie has MSDD (multi-sensory developmental disorder) instead of autism. I had never heard this term before. The symptoms are VERY similar to autism and MSDD kids exhibit many of the same behaviors and sensory problems as ASD kids. The only real difference noted was that MSDD kids tend to respond better to therapy and do no have the same level of cognitive impairment as ASD kids. Their tendency to avoid social interaction or to withdraw stems more from unpleasant sensory experiences rather than a lack of interest in others. This does make me wonder about Charlie because he often does seem interested in other people and can be very social at times. We really have no way of knowing at this point whether he could be considered MSDD, and it does not matter as the therapies and interventions are all the same.
Charlie is doing great on his supplements so far (multivitamin, CLO, calcium and probiotics). The probiotics seem to have really helped his tummy and, thankfully, don't seem to have any taste as he gobbles them up in fruit, applesauce, juice no problem -- can't say the same for the multivitamin in the taste category. We'll start the calcium plus magnesium next, then we'll supplement with a little extra zinc and an anti-oxidant supplement which Dr. Woeller recommends.
Wednesday, May 13, 2009
ABA Assessment
We've had a busy week. . .Is it Friday yet?? :)
Monday was Charlie's ABA assessment. Unfortunately, Charlie did not nap on Sunday and got up about 5:30 a.m. on Monday so he was very tired when it came time for his appointment. He had big circles under his eyes, and, by the end of the assessment looked like he could easily fall asleep in the desk chair. He started off throwing quite a tantrum. I've never seen these behaviors in Charlie before. We walked by the play area to the back office for the assessment. Charlie was not happy with this. He wanted to play, not go sit in some stuffy office. He let us know about his displeasure. He kept going up to the owner/therapist who was doing the assessment and tried to grab her out of the chair so she would open the door. He hit her, pulled her hair, screamed at her, etc. She ignored him, even as he hit her and pulled her hair. She said that is what they do, they ignore the bad behaviors (unless it causes physical pain to the therapist) until the child quiets down. At that time, they thank them for being quiet and give them positive feedback. I just sat there kind of stunned as I had never seen Charlie like that before. (However, later in the day he got mad at me and pulled my hair a couple of times. I did not ignore it because it DID hurt!!!) I am still wondering if we are seeing yeast die-off or if he was just tired. . . or probably a little bit of both. I looked back at Jenny McCarthy's book, Healing and Preventing Autism, and some of the symptoms for yeast die-off include tantrums, aggression and hitting. It is enough to make me wonder. Thankfully, the tantrums seemed to cease by Tuesday.
The ABA assessment was informative. Charlie did very good with verbal instructions and did everything he was asked to do. He also did well in matching 3-dimensional objects (such as a sock to a sock, or a toy car to a toy car, block to block, etc). However, he would not even take the time to look at pictures to match those. He literally took the picture out of her hand and just threw it on top of another without even really looking at it. Obviously, he scored very low (if he even scored at all) in the requesting category since he does not ask questions and rarely tells us what he wants. She noted that a lot of the other areas where he scored on the lower end were largely due to lack of compliance (no attention span or he just did not want to do what was being asked of him). She said he is in a much better position than most of the kids that come to therapy because he already has the skills, we just have to work on his compliance and draw him back out again.
Charlie had his second OT session today. The therapist said he did great and listened to all of her instructions. She said there was some spontaneous speech, but she thought it was probably scripted (or echolalia). He did protest rather loud (as I heard in the waiting room) when she took him from the gym to the desk to work on fine motor skills and writing. Once again, Addison and I stayed in the waiting room. Addison is quite the little personality. She went around to EVERYONE and handed them a toy or a brochure. Anyone who walked through the door was greeted by Addison and shown toys and babbled at endlessly.
Other than some behavior issues on Monday, Charlie has had a good week. After he napped on Monday afternoon, he seemed to be in a better mood. His sister can get on his nerves with her constant habit of yelling "NO!" at him. I can't say as I blame him. She actually seems to get a kick out of making him react. Charlie has been repeating a lot and singing songs with me. Today I was sitting in the car trying to read the OT assessment and both kids were getting cranky just sitting there, not moving. Charlie said "You want to get out!" Clearly he was telling me to get a move on or get him out. While he did repeat it exactly as heard as it was asked to him instead of "I want to get out". . . he can still find ways to get his message across!
Charlie is going to have a very busy summer. He will have OT on Monday and Thursday afternoons and ABA on Tuesday, Wednesday and Thursday mornings. Tuesday and Thursday will be 4 hours of ABA, Wednesday will be 2 hours. It's a tough schedule, but one that other parents of autistic children know well.
Next week Charlie will get an EEG and has an appointment with a pediatric neurologist. The pediatrician wanted Charlie to see a neurologist since his regression was later than average just to make sure there is nothing else going on. I saw on her report that she recommends the neurologist do a blood test for lead. Keeping Charlie still while they put numerous electrodes on his head should be fun. . . almost as much fun as holding him down for a blood draw will be! I'll have to figure out a fun and special treat for him that day.
Monday was Charlie's ABA assessment. Unfortunately, Charlie did not nap on Sunday and got up about 5:30 a.m. on Monday so he was very tired when it came time for his appointment. He had big circles under his eyes, and, by the end of the assessment looked like he could easily fall asleep in the desk chair. He started off throwing quite a tantrum. I've never seen these behaviors in Charlie before. We walked by the play area to the back office for the assessment. Charlie was not happy with this. He wanted to play, not go sit in some stuffy office. He let us know about his displeasure. He kept going up to the owner/therapist who was doing the assessment and tried to grab her out of the chair so she would open the door. He hit her, pulled her hair, screamed at her, etc. She ignored him, even as he hit her and pulled her hair. She said that is what they do, they ignore the bad behaviors (unless it causes physical pain to the therapist) until the child quiets down. At that time, they thank them for being quiet and give them positive feedback. I just sat there kind of stunned as I had never seen Charlie like that before. (However, later in the day he got mad at me and pulled my hair a couple of times. I did not ignore it because it DID hurt!!!) I am still wondering if we are seeing yeast die-off or if he was just tired. . . or probably a little bit of both. I looked back at Jenny McCarthy's book, Healing and Preventing Autism, and some of the symptoms for yeast die-off include tantrums, aggression and hitting. It is enough to make me wonder. Thankfully, the tantrums seemed to cease by Tuesday.
The ABA assessment was informative. Charlie did very good with verbal instructions and did everything he was asked to do. He also did well in matching 3-dimensional objects (such as a sock to a sock, or a toy car to a toy car, block to block, etc). However, he would not even take the time to look at pictures to match those. He literally took the picture out of her hand and just threw it on top of another without even really looking at it. Obviously, he scored very low (if he even scored at all) in the requesting category since he does not ask questions and rarely tells us what he wants. She noted that a lot of the other areas where he scored on the lower end were largely due to lack of compliance (no attention span or he just did not want to do what was being asked of him). She said he is in a much better position than most of the kids that come to therapy because he already has the skills, we just have to work on his compliance and draw him back out again.
Charlie had his second OT session today. The therapist said he did great and listened to all of her instructions. She said there was some spontaneous speech, but she thought it was probably scripted (or echolalia). He did protest rather loud (as I heard in the waiting room) when she took him from the gym to the desk to work on fine motor skills and writing. Once again, Addison and I stayed in the waiting room. Addison is quite the little personality. She went around to EVERYONE and handed them a toy or a brochure. Anyone who walked through the door was greeted by Addison and shown toys and babbled at endlessly.
Other than some behavior issues on Monday, Charlie has had a good week. After he napped on Monday afternoon, he seemed to be in a better mood. His sister can get on his nerves with her constant habit of yelling "NO!" at him. I can't say as I blame him. She actually seems to get a kick out of making him react. Charlie has been repeating a lot and singing songs with me. Today I was sitting in the car trying to read the OT assessment and both kids were getting cranky just sitting there, not moving. Charlie said "You want to get out!" Clearly he was telling me to get a move on or get him out. While he did repeat it exactly as heard as it was asked to him instead of "I want to get out". . . he can still find ways to get his message across!
Charlie is going to have a very busy summer. He will have OT on Monday and Thursday afternoons and ABA on Tuesday, Wednesday and Thursday mornings. Tuesday and Thursday will be 4 hours of ABA, Wednesday will be 2 hours. It's a tough schedule, but one that other parents of autistic children know well.
Next week Charlie will get an EEG and has an appointment with a pediatric neurologist. The pediatrician wanted Charlie to see a neurologist since his regression was later than average just to make sure there is nothing else going on. I saw on her report that she recommends the neurologist do a blood test for lead. Keeping Charlie still while they put numerous electrodes on his head should be fun. . . almost as much fun as holding him down for a blood draw will be! I'll have to figure out a fun and special treat for him that day.
Sunday, May 10, 2009
A Wonderful Mother's Day
I had a great mother's day spending time with my husband and kids. Adam made a delicious breakfast this morning. Then we went to church and out to lunch. We went to Lee Roy Selmon's as they have a gluten free menu. We all had delicous meals. Charlie ate every bite of his chicken and tomatoes. . . not too much of the broccoli. :) This afternoon we all went swimming in the pool. Both Charlie and Addison really love the water. Charlie has taken to experimenting with how deep he can go. . . We have to keep a close eye because he will all of a sudden get to the point where he is no longer above water. Most of the time now he can kick himself back above the surface, but he still needs to be watched closely and needs a little nudge from time to time.
Last night we had dinner with friends. They have two daughters, 4 and 6 years old. Both girls just loved Addison and wanted to play with her and dress her up in princess dresses. Charlie and Addison had a great time playing with them and dancing to the music with the disco ball spinning. It was a very fun night.
This will be another busy week for us. Charlie has his ABA therapy evluation tomorrow and two days of OT this week. Speech therapy should start soon.
Charlie is still taking his vitamins. . .although I have to find a new way to administer them as right now, he is drinking way too much juice. We just started probiotics yesterday. This is much more potent than what you find in your every day yogurt. Probiotics are highly recommended for autistic children because the overwhelming majority have yeast overgrowth to some extent. The yeast can cause lots of GI problems, leading to improper indigestion, a leaky gut, and, in some instances, a general sense of fogginess. We are starting with ProBio Gold from Kirkman's and will likely rotate probiotics periodically as the body can build up an immune response to repeated use of the same strains of probiotics. I have been reading that some kids can get pretty crazy when they start probiotics as a result of yeast "die-off" and the toxins that are created through that process. Some kids start stimming even more, throwing temper tantrums, horrible diarrhea, while others can get almost catatonic and some even feel physically ill and present with flu-like symptoms. It all depends on how much yeast is in the GI tract and how each child experiences "die-off." Die-off can last for a couple of days or a couple of weeks, then most parents report improved behaviors and cognition (more words, more aware, better eye contact, etc.) We have been starting off very slowly. Yesterday afternoon I gave Charlie 1/4 of 1 capsule in some applesauce. This evening I gave him about 1/2 a capsule in some juice. I'm not sure if we are seeing die-off, but he did have an absolute horrible tantrum this evening when we tried to put him down for bed. I've not really seen one like this before where he was literally thrashing and rolling around in his bed. It's hard to say if this could be die-off or if he was just very tired as I have noticed, like with any child, his symptoms became much more exaggerated when he is tired. This is causing some issues now as he does not want to take naps anymore and is getting pretty run down by the end of the day, which makes him pretty cranky around dinner time. This is the only time I ever really see noises or other stimuli bother him. Hopefully we can figure something out with his sleep schedule. . . with all of his therapies starting soon, I have a feeling he may be falling into bed as soon as he gets home.
I wanted to close this post with the most beautiful story. It was posted by a parent on one of the autism web groups I have joined. I actually just bought a plaque for Addison's room with a quote by the same author, Erma Bombeck, which I love. The plaque reads: "When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, 'I used everything you gave me.'" This post is about mothers of "disabled" children and absolutely brought more than one tear to my eye. Happy Mother's day to all.
Mothers of Disabled Children (May 11, 1980)
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year, nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers of handicapped children are chosen?
Somehow I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.
As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth: son; patron saint, Matthew. Forest, Marjorie: daughter; patron saint, Cecelia."Rudledge, Carrie: twins; patron saint... give her Gerard. He's used to profanity.
"Finally, He passes a name to an angel and smiles. "Give her a blind child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," says God. "Could I give a child with a handicap to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness. "
The angel gasps. "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."
"I will permit her to see clearly the things I see -- ignorance, cruelty, prejudice -- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, pen poised in mid-air.
God smiles.
"A mirror will suffice."
(transcribed from Forever, Erma by Erma Bombeck
Last night we had dinner with friends. They have two daughters, 4 and 6 years old. Both girls just loved Addison and wanted to play with her and dress her up in princess dresses. Charlie and Addison had a great time playing with them and dancing to the music with the disco ball spinning. It was a very fun night.
This will be another busy week for us. Charlie has his ABA therapy evluation tomorrow and two days of OT this week. Speech therapy should start soon.
Charlie is still taking his vitamins. . .although I have to find a new way to administer them as right now, he is drinking way too much juice. We just started probiotics yesterday. This is much more potent than what you find in your every day yogurt. Probiotics are highly recommended for autistic children because the overwhelming majority have yeast overgrowth to some extent. The yeast can cause lots of GI problems, leading to improper indigestion, a leaky gut, and, in some instances, a general sense of fogginess. We are starting with ProBio Gold from Kirkman's and will likely rotate probiotics periodically as the body can build up an immune response to repeated use of the same strains of probiotics. I have been reading that some kids can get pretty crazy when they start probiotics as a result of yeast "die-off" and the toxins that are created through that process. Some kids start stimming even more, throwing temper tantrums, horrible diarrhea, while others can get almost catatonic and some even feel physically ill and present with flu-like symptoms. It all depends on how much yeast is in the GI tract and how each child experiences "die-off." Die-off can last for a couple of days or a couple of weeks, then most parents report improved behaviors and cognition (more words, more aware, better eye contact, etc.) We have been starting off very slowly. Yesterday afternoon I gave Charlie 1/4 of 1 capsule in some applesauce. This evening I gave him about 1/2 a capsule in some juice. I'm not sure if we are seeing die-off, but he did have an absolute horrible tantrum this evening when we tried to put him down for bed. I've not really seen one like this before where he was literally thrashing and rolling around in his bed. It's hard to say if this could be die-off or if he was just very tired as I have noticed, like with any child, his symptoms became much more exaggerated when he is tired. This is causing some issues now as he does not want to take naps anymore and is getting pretty run down by the end of the day, which makes him pretty cranky around dinner time. This is the only time I ever really see noises or other stimuli bother him. Hopefully we can figure something out with his sleep schedule. . . with all of his therapies starting soon, I have a feeling he may be falling into bed as soon as he gets home.
I wanted to close this post with the most beautiful story. It was posted by a parent on one of the autism web groups I have joined. I actually just bought a plaque for Addison's room with a quote by the same author, Erma Bombeck, which I love. The plaque reads: "When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, 'I used everything you gave me.'" This post is about mothers of "disabled" children and absolutely brought more than one tear to my eye. Happy Mother's day to all.
Mothers of Disabled Children (May 11, 1980)
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year, nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers of handicapped children are chosen?
Somehow I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.
As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth: son; patron saint, Matthew. Forest, Marjorie: daughter; patron saint, Cecelia."Rudledge, Carrie: twins; patron saint... give her Gerard. He's used to profanity.
"Finally, He passes a name to an angel and smiles. "Give her a blind child."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," says God. "Could I give a child with a handicap to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it."
"But, Lord, I don't think she even believes in you."
God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness. "
The angel gasps. "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations."
"I will permit her to see clearly the things I see -- ignorance, cruelty, prejudice -- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, pen poised in mid-air.
God smiles.
"A mirror will suffice."
(transcribed from Forever, Erma by Erma Bombeck
Friday, May 8, 2009
First Day of OT
Charlie's first OT session was yesterday. He had a one hour session with Miss Megan. Things went pretty well. This was primarily a get to know each other/get acquainted session where Miss Megan can start to get to know Charlie and what he is and is not capable of as far as fine and gross motor skills. He did exhibit some selective hearing, but she quickly learned it was not because he did not understand, it was more that he wanted to keep doing a certain activity and did not want to move on (especially the ball pit, which, apparently he liked a lot). They worked a little on drawing and writing. He much preferred the gym (no surprise there). Charlie will go twice to OT next week and will then go pretty regularly on Mondays and Thursdays.
Addison and I stayed in the waiting room while Charlie had his session. So much fun to be in a waiting room for an hour with a very busy 19 month old! Actually, Addison had a great time "playing" with all of the kids in the waiting room and going around handing all the parents/grandparents toys, books and pamphlets.
I am getting quite an education through this process as I am being exposed to a population I knew nothing about before this. I know I've said it once, but I will say it again (and probably again and again), it amazes me how alike, and yet so different, kids on the spectrum are. While waiting for Charlie there was another little girl in there, who I later found out is in second grade, waiting for her session to begin. She reminded me a lot of Charlie in certain ways -- she was singing songs and repeating some things, she definitely preferred to play be herself and when Addison approached her to try to play with her or take her toys (which she did repeatedly), she either ignored her or was very passive with a barely audible "no." But she loved to watch Addison and I playing on the other side of the room. She would watch us with a little smile on her face. Then, one of her schoolmates came in that she knew and she was almost a totally different kid. She took off her sunglasses and visor (I assume she has some sensory issues to light and that's why she was wearing it) and was almost flirting with this little boy and flashing smiles. She started talking about how Addison was so curious and getting into everything. It was really quite cute.
There was also a little boy in there who had some serious anger management issues. He was building a tower, and, of course my daughter knocked it over. He ran into the corner and screamed and shook and just looked like he would generally explode. His grandparents had to take him outside repeatedly because he would not calm down. Yikes. Such a wide array of personalities.
On a personal note, I read a wonderful essay the other day by Jack Zimmerman, the husband of Dr. McCandless, the author of Children With Starving Brains. Boy did this hit home for me as he voiced an internal struggle I have been dealing with since we first found out about Charlie's likely diagnosis. . . and that is the whole concept of "fixing" or "curing" your child. No matter what, I think Charlie is perfect. More than ever, this experience makes me question societal ideals of "normal" or "neuro-typical," etc. Fact of the matter is, I don't care that Charlie is a little different, I fight with myself over this idea of intense treatments to heal him. Isn't this placing our ideas of what is normal or socially acceptable on this little boy who can't really voice his opinion? When I really think about it, I don't know that many people, if any, who are all together "normal." We all have our weird quirks about us, some more so than others. While I cringe at the idea of Charlie having a hard time, I also think this will open up doors for him and present new opportunities that would not otherwise be possible. It's strangely exciting to think of how he may see the world. Is he really visual? Will he be able to see things that we "neuro-typical" people cannot? Or maybe he will just have a different interpretation that may shape a whole new way of thinking. He will have struggles that "neuro-typical" children won't have, but in the end, I think this only makes him a better person. And I want to ensure that we provide every possible mechanism to allow him to be happy and successful.
Zimmerman concludes that, yes, we have the right to "heal" these kids, if and only if, we agree to make a life change that is just as profound as they are making through the healing process. I could not agree more. I think this has already begun for me. I see the world very differently now than I once did. I have learned the lesson of acceptance and a whole new dimension to the emotion of love. Zimmerman wrote the following poem about his granddaughter Chelsey, who is autistic. I think it is beautiful and summarizes some of these issues quite well:
INVITATION
a poem written by Jack Zimmerman
Come, take my hand
So I can find you in the eye of the whirlwind
Calling medicine back to its spirit home
And welcoming the lost tribe of children
Our little adept among them
As you keep reminding me, we need to work from another level
Which means creating an entire heartscape, nothing less
Chelsey is waiting—I see the message in her big browns
“Only full surrender satisfies my mission.”
Take my hand—again
As at our birth when you led me out
Of a flat world into the delights and shadows of Eros
Now, our toes curled around the edges of the past
We hesitate, seeking a still greater revelation of Love
Are we too heavy with treasured wounds and attachments to fly
Or is it fear of the demons at the doorway to ecstasy?
No matter, our courage will soon rise to the new occasion
Since it always starts with, “Gramma--Grampa will you dance with me?”
And so leaps of faith and healing are merging movements
Connecting you and Chelsey inside the Mystery
That we touch as well when our trust is great enough
To fall more wildly into Love’s uncharted forests
And then to guide us into the clearing of our hearts
We can create similar shamanic celebrations
To re-awaken our unrelenting messenger
And so embrace her healing with enough persistent passion
To wholly feed that starving brain
This enlightening of our aim to cure
Will see through the harvest of impaired immunities
Into the innate wholeness of each ancient soul
So too our little Buddha, our Christ Child, asks for recognition
I heard the call again the night I phoned to celebrate her tenth
She said, “Hi, Grampa” in that soft and rounded voice
That opens my heart and wild eyes to smiling
She waits for us to leap and doesn’t need fixing
As much as being met half way with laughter
“Here, take my hand”
Excites the biggest grin of all
Since she’s been longing for our commitment
To meet in Rumi’s field together
That consummation meets her challenge
To claim our fullest lives while still embodied
“But words don’t matter,” she says, “The joke’s on you
“You jumped a long time ago and have been falling forever
“There’s nothing else to do.”
February, 2004
Addison and I stayed in the waiting room while Charlie had his session. So much fun to be in a waiting room for an hour with a very busy 19 month old! Actually, Addison had a great time "playing" with all of the kids in the waiting room and going around handing all the parents/grandparents toys, books and pamphlets.
I am getting quite an education through this process as I am being exposed to a population I knew nothing about before this. I know I've said it once, but I will say it again (and probably again and again), it amazes me how alike, and yet so different, kids on the spectrum are. While waiting for Charlie there was another little girl in there, who I later found out is in second grade, waiting for her session to begin. She reminded me a lot of Charlie in certain ways -- she was singing songs and repeating some things, she definitely preferred to play be herself and when Addison approached her to try to play with her or take her toys (which she did repeatedly), she either ignored her or was very passive with a barely audible "no." But she loved to watch Addison and I playing on the other side of the room. She would watch us with a little smile on her face. Then, one of her schoolmates came in that she knew and she was almost a totally different kid. She took off her sunglasses and visor (I assume she has some sensory issues to light and that's why she was wearing it) and was almost flirting with this little boy and flashing smiles. She started talking about how Addison was so curious and getting into everything. It was really quite cute.
There was also a little boy in there who had some serious anger management issues. He was building a tower, and, of course my daughter knocked it over. He ran into the corner and screamed and shook and just looked like he would generally explode. His grandparents had to take him outside repeatedly because he would not calm down. Yikes. Such a wide array of personalities.
On a personal note, I read a wonderful essay the other day by Jack Zimmerman, the husband of Dr. McCandless, the author of Children With Starving Brains. Boy did this hit home for me as he voiced an internal struggle I have been dealing with since we first found out about Charlie's likely diagnosis. . . and that is the whole concept of "fixing" or "curing" your child. No matter what, I think Charlie is perfect. More than ever, this experience makes me question societal ideals of "normal" or "neuro-typical," etc. Fact of the matter is, I don't care that Charlie is a little different, I fight with myself over this idea of intense treatments to heal him. Isn't this placing our ideas of what is normal or socially acceptable on this little boy who can't really voice his opinion? When I really think about it, I don't know that many people, if any, who are all together "normal." We all have our weird quirks about us, some more so than others. While I cringe at the idea of Charlie having a hard time, I also think this will open up doors for him and present new opportunities that would not otherwise be possible. It's strangely exciting to think of how he may see the world. Is he really visual? Will he be able to see things that we "neuro-typical" people cannot? Or maybe he will just have a different interpretation that may shape a whole new way of thinking. He will have struggles that "neuro-typical" children won't have, but in the end, I think this only makes him a better person. And I want to ensure that we provide every possible mechanism to allow him to be happy and successful.
Zimmerman concludes that, yes, we have the right to "heal" these kids, if and only if, we agree to make a life change that is just as profound as they are making through the healing process. I could not agree more. I think this has already begun for me. I see the world very differently now than I once did. I have learned the lesson of acceptance and a whole new dimension to the emotion of love. Zimmerman wrote the following poem about his granddaughter Chelsey, who is autistic. I think it is beautiful and summarizes some of these issues quite well:
INVITATION
a poem written by Jack Zimmerman
Come, take my hand
So I can find you in the eye of the whirlwind
Calling medicine back to its spirit home
And welcoming the lost tribe of children
Our little adept among them
As you keep reminding me, we need to work from another level
Which means creating an entire heartscape, nothing less
Chelsey is waiting—I see the message in her big browns
“Only full surrender satisfies my mission.”
Take my hand—again
As at our birth when you led me out
Of a flat world into the delights and shadows of Eros
Now, our toes curled around the edges of the past
We hesitate, seeking a still greater revelation of Love
Are we too heavy with treasured wounds and attachments to fly
Or is it fear of the demons at the doorway to ecstasy?
No matter, our courage will soon rise to the new occasion
Since it always starts with, “Gramma--Grampa will you dance with me?”
And so leaps of faith and healing are merging movements
Connecting you and Chelsey inside the Mystery
That we touch as well when our trust is great enough
To fall more wildly into Love’s uncharted forests
And then to guide us into the clearing of our hearts
We can create similar shamanic celebrations
To re-awaken our unrelenting messenger
And so embrace her healing with enough persistent passion
To wholly feed that starving brain
This enlightening of our aim to cure
Will see through the harvest of impaired immunities
Into the innate wholeness of each ancient soul
So too our little Buddha, our Christ Child, asks for recognition
I heard the call again the night I phoned to celebrate her tenth
She said, “Hi, Grampa” in that soft and rounded voice
That opens my heart and wild eyes to smiling
She waits for us to leap and doesn’t need fixing
As much as being met half way with laughter
“Here, take my hand”
Excites the biggest grin of all
Since she’s been longing for our commitment
To meet in Rumi’s field together
That consummation meets her challenge
To claim our fullest lives while still embodied
“But words don’t matter,” she says, “The joke’s on you
“You jumped a long time ago and have been falling forever
“There’s nothing else to do.”
February, 2004
Monday, May 4, 2009
D Day
Today we received Charlie's official diagnosis of autism. Obviously this comes as no surprise and does not change the course we have already begun. Charlie was diagnosed using the Childhood Autism Rating Scale (CARS). CARS scores range from 15 to 60 with a minimum score of 30 being the cut off for a dx of autism. Charlie scored a 31 on the CARS, which just puts him in the autism category. This category is defined as "mild/moderate" autism.
Now I feel we are officially done with labels. In my opinion, the whole diagnosis (labeling) process is a waste of time since most parents already know what they are dealing with and know their children far better than any doctor and no test is going to capture everything. However, it is a necessary evil in that you need a dx to get treatments covered by insurance (what little they do actually cover) and to get services from your local school system.
There is one advantage to a dx of autism over one of say, PDD-NOS, in that Charlie will likely qualify for more services through the local school system and maybe other organizations. For some reason, they deem the dx of autism more seriously than "just" a PDD dx. . .although you would be hard pressed to find differences between many of these kids. Dr. Carnavale told us today that if a child is borderline, she will usually dx them with autism so they can get more services. Whatever works is what I say. If a dx of autism for Charlie is what we need, so be it. Now we can get on with the healing.
Dr. Carnavale recommended all of the therapies we have already lined up (OT, speech, ABA). She did recommend keeping him in school, whether public or private, for socialization purposes. She said we live in a good school district so the public school program will probably be pretty good. I will have no way of knowing this until the next school year since we are already close to the end of the current year. I think we will try to have Charlie placed in an ELP program as opposed to a spectrum class, but this process is new to me so I'm not quite sure what is involved. I know we will have an IEP meeting with the school board to draft Charlie's educational plan and seek as many services we can from that route. Dr. Carnavale said most parents whose children go to public school continue to supplement with private therapies as long as they can afford it. I think we will go this route, but just won't know anything for sure until we actually get there. For now, Charlie will spend his summer in private therapies. I hope to start OT and speech in the next week or two. He is scheduled for an ABA assessment on May 11. We can start whenever we coordinate schedules.
Dr. Carnavale did state again that she thought he would do quite well, especially since he developed normally and was communicative in the past. She thinks the therapies will draw it back out of him. She said that he already has a great therapist right at home -- his little sister! (She was at Charlie's initial evaluation. Dr. Carnavale noted today that she is EXTREMELY social -- that is an understatement. The child will "talk" anyone and everyone's head off and shows very little signs of shyness.) She said that Addison will "make" him socialize more so than if he was an only child, and when she starts having friends over this will also be good for Charlie.
We spoke for a long time about evolving dx. She said there is a phrase that is used: "autism in regression." Jenny McCarthy and others refer to it as recovery (note, this is not the word "cure" as most don't believe there is a true cure, but that the behaviors and sensory issues can be treated to the point that a lot of these kids do "lose" their autism dx.) She said she would not be surprised to see Charlie move from an autism dx to an Asperger's dx with perhaps some underlying anxiety and maybe some ADD. Then later, we may just be dealing with some anxiety and/or ADD, possibly coupled with a learning disability as many of these kids do have underlying LDs that only come out later. This is all speculation at this point. She said to keep a copy of her report and dx because in a short time we will look at the behaviors and won't even be able to believe his progress. I hope she is right. I know my little boy can do it!!!
I am just about done with Dr. McCandless' book Children With Starving Brains. It's a very fascinating look into the biomedical world of treating autism. It does give me lots of hope, although it is also somehwat daunting to think of all of the vitamins, supplements, etc to keep track of. I highlighted the book and made notes of supplements that particularly interested me such as DMG and P5P (the active form of vitamin B6). We have to take this slow though and add things one at a time, starting with 1/4 of the recommended dose to make sure it sits well with Charlie. Our next step is to add a probiotic. I am looking at ProBio Gold from Kirkman's and Threelac to start with. All of these supplements are natural so I feel very comfortable with this mode of treatment. At the very least, Charlie will be a bit healthier.
I went out to Target today and bought some 3 ring binders and folders as I have so much paperwork coming out of my ears between doctors, therapists, information on supplements, treatments, GFCF diet, etc. For anyone interested in Dr. McCandless' research and information regarding biomedical treatments, you can check out her website at www.starvingbrains.com.
Charlie had a good day today. He was very happy all day and enjoyed a play date with his friend Jack this afternoon while mommy and daddy went to the doctor. There was a lot of stimming behavior this evening, but this is not uncommon for Charlie as he tends to be more hyper at night and the stimming seems to go hand-in-hand with that. I am going to start keeping a daily journal of his behaviors to better track his reactions (or lack thereof) to any new food or supplement we may add to his diet. This is turning out to be a full time job!
Now I feel we are officially done with labels. In my opinion, the whole diagnosis (labeling) process is a waste of time since most parents already know what they are dealing with and know their children far better than any doctor and no test is going to capture everything. However, it is a necessary evil in that you need a dx to get treatments covered by insurance (what little they do actually cover) and to get services from your local school system.
There is one advantage to a dx of autism over one of say, PDD-NOS, in that Charlie will likely qualify for more services through the local school system and maybe other organizations. For some reason, they deem the dx of autism more seriously than "just" a PDD dx. . .although you would be hard pressed to find differences between many of these kids. Dr. Carnavale told us today that if a child is borderline, she will usually dx them with autism so they can get more services. Whatever works is what I say. If a dx of autism for Charlie is what we need, so be it. Now we can get on with the healing.
Dr. Carnavale recommended all of the therapies we have already lined up (OT, speech, ABA). She did recommend keeping him in school, whether public or private, for socialization purposes. She said we live in a good school district so the public school program will probably be pretty good. I will have no way of knowing this until the next school year since we are already close to the end of the current year. I think we will try to have Charlie placed in an ELP program as opposed to a spectrum class, but this process is new to me so I'm not quite sure what is involved. I know we will have an IEP meeting with the school board to draft Charlie's educational plan and seek as many services we can from that route. Dr. Carnavale said most parents whose children go to public school continue to supplement with private therapies as long as they can afford it. I think we will go this route, but just won't know anything for sure until we actually get there. For now, Charlie will spend his summer in private therapies. I hope to start OT and speech in the next week or two. He is scheduled for an ABA assessment on May 11. We can start whenever we coordinate schedules.
Dr. Carnavale did state again that she thought he would do quite well, especially since he developed normally and was communicative in the past. She thinks the therapies will draw it back out of him. She said that he already has a great therapist right at home -- his little sister! (She was at Charlie's initial evaluation. Dr. Carnavale noted today that she is EXTREMELY social -- that is an understatement. The child will "talk" anyone and everyone's head off and shows very little signs of shyness.) She said that Addison will "make" him socialize more so than if he was an only child, and when she starts having friends over this will also be good for Charlie.
We spoke for a long time about evolving dx. She said there is a phrase that is used: "autism in regression." Jenny McCarthy and others refer to it as recovery (note, this is not the word "cure" as most don't believe there is a true cure, but that the behaviors and sensory issues can be treated to the point that a lot of these kids do "lose" their autism dx.) She said she would not be surprised to see Charlie move from an autism dx to an Asperger's dx with perhaps some underlying anxiety and maybe some ADD. Then later, we may just be dealing with some anxiety and/or ADD, possibly coupled with a learning disability as many of these kids do have underlying LDs that only come out later. This is all speculation at this point. She said to keep a copy of her report and dx because in a short time we will look at the behaviors and won't even be able to believe his progress. I hope she is right. I know my little boy can do it!!!
I am just about done with Dr. McCandless' book Children With Starving Brains. It's a very fascinating look into the biomedical world of treating autism. It does give me lots of hope, although it is also somehwat daunting to think of all of the vitamins, supplements, etc to keep track of. I highlighted the book and made notes of supplements that particularly interested me such as DMG and P5P (the active form of vitamin B6). We have to take this slow though and add things one at a time, starting with 1/4 of the recommended dose to make sure it sits well with Charlie. Our next step is to add a probiotic. I am looking at ProBio Gold from Kirkman's and Threelac to start with. All of these supplements are natural so I feel very comfortable with this mode of treatment. At the very least, Charlie will be a bit healthier.
I went out to Target today and bought some 3 ring binders and folders as I have so much paperwork coming out of my ears between doctors, therapists, information on supplements, treatments, GFCF diet, etc. For anyone interested in Dr. McCandless' research and information regarding biomedical treatments, you can check out her website at www.starvingbrains.com.
Charlie had a good day today. He was very happy all day and enjoyed a play date with his friend Jack this afternoon while mommy and daddy went to the doctor. There was a lot of stimming behavior this evening, but this is not uncommon for Charlie as he tends to be more hyper at night and the stimming seems to go hand-in-hand with that. I am going to start keeping a daily journal of his behaviors to better track his reactions (or lack thereof) to any new food or supplement we may add to his diet. This is turning out to be a full time job!
Sunday, May 3, 2009
A Nice Weekend
As usual, the weekends go by too fast. This weekend was the Spring Westchase garage sale. Our neighbors smoked an entire pig and had BBQ sandwiches for sale for all of the "shoppers," although I think the people in the neighborhood ate more then half of it. Charlie and Addison really enjoy spending time outside and "socializing" with the neighbors. Charlie especially never seems to want to come in -- I think he would hang outside all day if we let him. Charlie is definitely most comfortable around people he knows. He walks up to all of our neighbors and hugs them and calls them by name. Miss Addison is quite the social butterfly and really thinks every house on our cul-de-sac is hers. She even walks into our neighbor's house, opens up their pantry and points to the top shelf for an Oreo cookie. If their door is not open, she has been known to hit it until someone opens it, then she'll proceed to walk in and demand her cookie. At least Charlie is more subtle. ;)
Charlie had a great day at swim lessons on Saturday. He is comfortable now at the school and really likes his teacher. Another instructor came in at the end and I thought this would make him anxious, but he just went right with the flow and really seemed to enjoy himself the entire time. He is actually swimming now, albeit not very pretty. Every week the distance gets a little longer. He has finally gotten the notion of kick and seems to pretty much get "reach and grasp." In fact, he is so excited to kick, he kicked the whole time he was in the water, even when she was trying to hold him. It was quite funny to watch -- it was like the instructor was holding a little round-up toy that was just waiting to be let go. In fact, he entertained quite a few parents in the waiting area who were too busy watching Charlie to watch their own kids. I even heard one couple ask another mom if Charlie was her son. She said no and the other woman just said "He is just so fun to watch!" The other commented about what a big smile he had on his face the whole time. Things like that just warm my heart.
After regressing somewhat on potty training (and admittedly some of this is our fault for not putting him on the potty as often as we should), Charlie had a better weekend. I kept putting him on the potty over and over as he seems to have really developed a preference for his diaper and tries to get off the potty almost as soon as you set him on it. He did pretty good today, though. Early Saturay morning (about 2 a.m.), he came into our room crying and said "bathroom." I was pretty out of it and really just thought he was repeating the word. Then today on the way to the beach he said it again 2 or 3 times and when we got to the beach, his diaper was newly wet. So, I do think he was trying to tell us that he had to go potty. This is a huge development for him as he never really told us before except maybe 2 or 3 times. We would just blindly sit him on the potty to see if he had to go. I am hoping this happens again so I can really reward him and hopefully encourage it in the future.
We went to the beach today. Both the kids love the beach and want to stay in the water the whole time. The water was a perfect temperature and there was a nice breeze. Charlie sat in the water and seemed to love the sensation of the waves washing over him. Addison was very interested in the boats (or "bo" as she called them).
We had a play date with our friends this afternoon. Their son was just diagnosed with PDD. They are going to go to the same doctor for a more definite diagnosis. Seeing the two boys together really shows how similar, and yet, how different kids on the spectrum are. Charlie's friend does a lot of repetitive behaviors such as lining up things, turning things over, climing something over and over, etc. His mom said that he will turn all of his cars over on their backs and just spin the wheels. He will also line his parents up on the floor and make them lie totally flat. I did observe some of this, but again, if you don't know what you are looking for, you would never guess this little boy was autistic. He communicated with his parents more than Charlie communicates with us, though. Both boys spin and have some sensory issues and both did their own thing and did not really play with each other. Addison followed her new friend around almost the entire time. She really was quite interested in him and took his toys away repeatedly. He was a good sport about it.
After a couple good days, Charlie was a bit more "spacey" today. He seemed to be in his own little zone for a good part of the day. We try not to allow this to go on for very long and swoop in to make him join the group. We did have a couple more instances of spontaneous speech. Yesterday he looked at his hand and said "five fingers" and today he looked at a piece of garbage and told Adam "that's trash." We get excited about the small things in this house now! :)
We go back to see Dr. Carnavale tomorrow for an official diagnosis and discussion about treatments.
Charlie had a great day at swim lessons on Saturday. He is comfortable now at the school and really likes his teacher. Another instructor came in at the end and I thought this would make him anxious, but he just went right with the flow and really seemed to enjoy himself the entire time. He is actually swimming now, albeit not very pretty. Every week the distance gets a little longer. He has finally gotten the notion of kick and seems to pretty much get "reach and grasp." In fact, he is so excited to kick, he kicked the whole time he was in the water, even when she was trying to hold him. It was quite funny to watch -- it was like the instructor was holding a little round-up toy that was just waiting to be let go. In fact, he entertained quite a few parents in the waiting area who were too busy watching Charlie to watch their own kids. I even heard one couple ask another mom if Charlie was her son. She said no and the other woman just said "He is just so fun to watch!" The other commented about what a big smile he had on his face the whole time. Things like that just warm my heart.
After regressing somewhat on potty training (and admittedly some of this is our fault for not putting him on the potty as often as we should), Charlie had a better weekend. I kept putting him on the potty over and over as he seems to have really developed a preference for his diaper and tries to get off the potty almost as soon as you set him on it. He did pretty good today, though. Early Saturay morning (about 2 a.m.), he came into our room crying and said "bathroom." I was pretty out of it and really just thought he was repeating the word. Then today on the way to the beach he said it again 2 or 3 times and when we got to the beach, his diaper was newly wet. So, I do think he was trying to tell us that he had to go potty. This is a huge development for him as he never really told us before except maybe 2 or 3 times. We would just blindly sit him on the potty to see if he had to go. I am hoping this happens again so I can really reward him and hopefully encourage it in the future.
We went to the beach today. Both the kids love the beach and want to stay in the water the whole time. The water was a perfect temperature and there was a nice breeze. Charlie sat in the water and seemed to love the sensation of the waves washing over him. Addison was very interested in the boats (or "bo" as she called them).
We had a play date with our friends this afternoon. Their son was just diagnosed with PDD. They are going to go to the same doctor for a more definite diagnosis. Seeing the two boys together really shows how similar, and yet, how different kids on the spectrum are. Charlie's friend does a lot of repetitive behaviors such as lining up things, turning things over, climing something over and over, etc. His mom said that he will turn all of his cars over on their backs and just spin the wheels. He will also line his parents up on the floor and make them lie totally flat. I did observe some of this, but again, if you don't know what you are looking for, you would never guess this little boy was autistic. He communicated with his parents more than Charlie communicates with us, though. Both boys spin and have some sensory issues and both did their own thing and did not really play with each other. Addison followed her new friend around almost the entire time. She really was quite interested in him and took his toys away repeatedly. He was a good sport about it.
After a couple good days, Charlie was a bit more "spacey" today. He seemed to be in his own little zone for a good part of the day. We try not to allow this to go on for very long and swoop in to make him join the group. We did have a couple more instances of spontaneous speech. Yesterday he looked at his hand and said "five fingers" and today he looked at a piece of garbage and told Adam "that's trash." We get excited about the small things in this house now! :)
We go back to see Dr. Carnavale tomorrow for an official diagnosis and discussion about treatments.
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