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| Mar 29 2008, 11:36 PM EDT (current) | puzzled | 1 word added, 1496 words deleted |
| Mar 24 2008, 3:42 PM EDT | puzzled | 1495 words added |
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Hi! I am the mother of two beautiful children a 6 yr. old girl and a 2 yr. old boy. My daughter was diagnosed with Asperger's syndrome as she entered kindergarten. I have been searching for answers ever since. I have yet to recieve any advice from any one doctor about her syndrome. I find that very odd. Not one! When you are so new to it you don't even know what to ask the professionials. So here I am trying to put the pieces togeather the best that I know how. Books on the syndrome as well as the internet have been essential for acquiring facts and information. I have now found a third source for incredible information and testimony and that is- other parents! That is why I was interested in finding a support group in my local county.To my surprise there was not one. Until now! Another parent and I have organized a support group for family members and caregivers who are touched by the autism spectrum disorders, including Asperger's syndrome (of course), Rhett's syndrome, Childhood Disintegrative disorder and other Pervasive Developmental disorders Not Otherwise Specified, Sensory Processing disorder and ADD/ADHD.
The name of our group is "Supporting the Pieces". Sensory Integration dysfunction -by PuzzledMy daughter, Carlen age 6, was diagnosed with SID at the age of 4. When she entered Pre-k I had alot of concerns about how she would be able to handle everything. She was not diagnosed before-hand, although a feeling crept inside me that something was wrong with her sensory perception as an infant. I explained to the teacher that she is lacking in social skills and loud noises make her very aggitated. As the school year progressed the speech teacher contacted me and wanted to give her services for her speech. Her speech was 75% delayed as well as social skills of that of a 1 1/2 yr. old. I was sure that was accurate and at the same note saddend. My beautiful and sweet unsociable angel had alot of issues and that was only the beginning. Soon the speech and OT professionals asked me if I had every heard of sensory integration dysfunction. HUH? No, I hadn't. They gave me a questionare and it was revealation when I read all the questions. Yes, yes and yes to all the difficulties we had experienced. Her spitting out food all the time (started solids at around 2), holding her hands over her ears when she heard loud noises (crying at times to the sound of the vaccum), the wild spinning, the need to carry heavy objects wherever she went and the constant need to be hugged and touched. All the questions headed towards the answer! The results came back that she did indeed have this "SID". The OT met with me and she taught me several things to do with her and gave me a surgical scrub brush to brush her. The school did not provide OT or PT but the special education teacher brushed her until they decided that is was not nessacary anymore (although I begged to differ). I felt she needed more and definetly OT but I was not the professional or expert so I went with what they said. I did not know anything about my rights as a parent and did not have the right contacts for information. Whatever was happening in school was helping though. She no longer caused total distraction and final the threats of her being kicked out of school begin to cease. By the end of the school year she could contain herself and not knock into the other students or freak out with all the noise on the playground. During the summer before kindergarten she had speech services and we bought her a swingset. I tried to keep her active and involve her in situations with more stimulation. Then the other symptoms of something even more concerning began to peak. She began to stutter as soon as she started to communicate more. Her social skills were at an all time low and she didn't seem to play with her playdates like the other kids did. I would scheduled a playdate but she was not interested only with their animals or lining up all their toys. She simply played around them. I knew then that something else was wrong. Everyone told me it was probably ADHD but since birth we had seen the same peditrician and she always brushed everything off as "normal". So during the beginning of kindergarten I took her to another peditrician who supposedly had a special interest in SPD/SID. We had two long visits with her and she said she didn't have SID afterall. She was spoiled as she put it and suggested that my husband and I take a parenting class. During the second meeting before she told me that she didn't think she had SID she asked me if I had ever heard of autism. I said I had seen Rainman. And that was that nothing else progressed from there except a bit of curiousity on my part. I went home and got on the internet and looked up autism. I didn't look much though. Just at classic autism sites and then back to all the SID sites which incidently mentioned autism. I ignored it. I took her to a different peditrician who dubbed her as "a poster child for ADHD" later that first semester in kindergarten all the while she recieved speech and I took her to school 30 minutes early every weekday and I would swing her, let her play in the ball pit and brush her. I took over and it really seemed to help her concentration. She was doing great in school and was learning faster than most of her classmates. That was a great relief. So how could a child with great grades have ADHD? I couldn't believe we were back to square one with the ADHD thing. He was ready to give me a prescription right then and there. So easily were the meds. I felt it was wrong and told him so. That is when he suggested we see a pychologist. That was the best thing he could've done. She was diagnosed with Asperger's syndrome as well as SID. The night before the results on all the tests she was given over the course of a couple of weeks I looked up ADHD,SID and autism in one search. Asperger's was brought up. I read the checklist and god-almighty! I started to cry. So before they told us- I had found it first. I was mentally prepared for the diagnosis the next day. Just as I suspected -Asperger's syndrome. The SID is the worst symptom along with the lack of social skills and speech delay with stuttering. With the diagnosis, I relayed all the information in the IEP meeting. The didn't seemed shocked. In fact, the speech teacher said she had suspected it all along. I was somewhat peeved she didn't say anything before but I also understand the school stipulations. I continued taking her to school 30 minutes before school to meet her sensory diet. Obviously what I was doing with her was working by the end of the school year she recieved an award for being the best reader out of her kindergarten class. She was not spitting her food out as often and she quit spinning entirely. Her social skills were still immature but that came from the Asperger's. She is now 6 (7 one month from today) and goes to a different school and is in the first grade. She is in a very small school. I am not pleased with her current services because the teacher has never heard of Asperger's or SID. She attends speech therapy at school 2 days a week for 15 minutes just like at her last school. She also has OT now- with a little arm pulling from myself at the IEP meeting with the other members. I have not enrolled her into anything outside the school except with what we do at home. She indulges in her sensory diet on her own alot of the time. She lifts up the couch at random times and still carries around her pellet-filled dogs (an obsession she has had since 1 1/2- no dolls ever!) with her. The biggest challenge she has still not overcome is her intense hatred towards clothes!! I leave you with the best for last. She will not wear socks, underwear, blue jeans, any shirts with buttons or hoods. I have to cut out all tags or she will cry until they are gone. Every morning she is very sensitive to any change in texture. Sometimes I will bathe her the nite before and put on wrinkle-free clothing so she doesn't have to change in the morning. She hates her hair and wishes she were bald. At times she balls because her hair drives her crazy. Down or in a pony tail it doesn't matter she hates it and wants it to go away. My princess is half latina and has a head full although it is cut short. I could brush her for an hour and she would still be upset about the "lines" as she puts it on her clothing (seams). The sun and light in the morning really upsets her and the lights must be off and the windows shut. As the morning progresses she can handle more and more light. Now these are the things that get progressively worse and the stuttering can be very intense at times of emotional distress. Overall, I feel the best thing she can recieve for her sensory diet is the tightest hug from the ones who love her. I can feel her body relax as she is held so very close to me and she shuts out the sounds that distress her and focuses on the beat of my heart and the smell of my skin. I feel God put us togeather for a reason. I always shunned affection and touch and now embrace it for it is the need of my beautiful girl, Carlen Jazmin Lazcano.Pieces"
Hi, I am a mom to 2 great kids a 16 year old daughter, and an 8 year old son. My son was born with Autism. When my son was an infant we knew something was different, but hard to place a finger on. As he reached the 12-15 month mark things went CRAZY he was a self abuser and that was tough. We got into the system at about 18 months and were able to get some awesome early intervention. I have been very fortunate in the group of peers I have met on this journey, but the one thing that is lacking for our community is a parent group, and as a parent I know that you feel like you are the only one who is dealing with things and you convince yourself that your nuts and the your whole family is losing its mind when indeed it is just a common reaction to dealing with a child or children with special needs.
I have two young boys ages 4 and 6. My oldest son had always been different than other children. He had a much higher vocabulary and would say and do the oddest things. At first we thought it was really cute, until he had to start interacting with other children. He was kicked out of 5 daycares for behavior issues and we began to suspect ADHD. So when he started kindergarden and spent 4 out of 5 days with the security guard we decided it was time to have him evaluated. We knew that he wasn't hyperactive, but suspected problems with attention. We were grasping at straws. When the psychologist came back with a suspected diagnosis of Asperger's Syndrome we were shocked. Within the next few months we recieved the official diagnosis and we have come to accept and even embrace this syndrome. Yes our son may not understand certain social cues, but he is a true leader and a tough little man.
NOW ADD YOUR STORY JUST CLICK THE EASY EDIT BUTTON AT THE TOP LEFT CORNER The name of our group is "Supporting the Pieces". Sensory Integration dysfunction -by PuzzledMy daughter, Carlen age 6, was diagnosed with SID at the age of 4. When she entered Pre-k I had alot of concerns about how she would be able to handle everything. She was not diagnosed before-hand, although a feeling crept inside me that something was wrong with her sensory perception as an infant. I explained to the teacher that she is lacking in social skills and loud noises make her very aggitated. As the school year progressed the speech teacher contacted me and wanted to give her services for her speech. Her speech was 75% delayed as well as social skills of that of a 1 1/2 yr. old. I was sure that was accurate and at the same note saddend. My beautiful and sweet unsociable angel had alot of issues and that was only the beginning. Soon the speech and OT professionals asked me if I had every heard of sensory integration dysfunction. HUH? No, I hadn't. They gave me a questionare and it was revealation when I read all the questions. Yes, yes and yes to all the difficulties we had experienced. Her spitting out food all the time (started solids at around 2), holding her hands over her ears when she heard loud noises (crying at times to the sound of the vaccum), the wild spinning, the need to carry heavy objects wherever she went and the constant need to be hugged and touched. All the questions headed towards the answer! The results came back that she did indeed have this "SID". The OT met with me and she taught me several things to do with her and gave me a surgical scrub brush to brush her. The school did not provide OT or PT but the special education teacher brushed her until they decided that is was not nessacary anymore (although I begged to differ). I felt she needed more and definetly OT but I was not the professional or expert so I went with what they said. I did not know anything about my rights as a parent and did not have the right contacts for information. Whatever was happening in school was helping though. She no longer caused total distraction and final the threats of her being kicked out of school begin to cease. By the end of the school year she could contain herself and not knock into the other students or freak out with all the noise on the playground. During the summer before kindergarten she had speech services and we bought her a swingset. I tried to keep her active and involve her in situations with more stimulation. Then the other symptoms of something even more concerning began to peak. She began to stutter as soon as she started to communicate more. Her social skills were at an all time low and she didn't seem to play with her playdates like the other kids did. I would scheduled a playdate but she was not interested only with their animals or lining up all their toys. She simply played around them. I knew then that something else was wrong. Everyone told me it was probably ADHD but since birth we had seen the same peditrician and she always brushed everything off as "normal". So during the beginning of kindergarten I took her to another peditrician who supposedly had a special interest in SPD/SID. We had two long visits with her and she said she didn't have SID afterall. She was spoiled as she put it and suggested that my husband and I take a parenting class. During the second meeting before she told me that she didn't think she had SID she asked me if I had ever heard of autism. I said I had seen Rainman. And that was that nothing else progressed from there except a bit of curiousity on my part. I went home and got on the internet and looked up autism. I didn't look much though. Just at classic autism sites and then back to all the SID sites which incidently mentioned autism. I ignored it. I took her to a different peditrician who dubbed her as "a poster child for ADHD" later that first semester in kindergarten all the while she recieved speech and I took her to school 30 minutes early every weekday and I would swing her, let her play in the ball pit and brush her. I took over and it really seemed to help her concentration. She was doing great in school and was learning faster than most of her classmates. That was a great relief. So how could a child with great grades have ADHD? I couldn't believe we were back to square one with the ADHD thing. He was ready to give me a prescription right then and there. So easily were the meds. I felt it was wrong and told him so. That is when he suggested we see a pychologist. That was the best thing he could've done. She was diagnosed with Asperger's syndrome as well as SID. The night before the results on all the tests she was given over the course of a couple of weeks I looked up ADHD,SID and autism in one search. Asperger's was brought up. I read the checklist and god-almighty! I started to cry. So before they told us- I had found it first. I was mentally prepared for the diagnosis the next day. Just as I suspected -Asperger's syndrome. The SID is the worst symptom along with the lack of social skills and speech delay with stuttering. With the diagnosis, I relayed all the information in the IEP meeting. The didn't seemed shocked. In fact, the speech teacher said she had suspected it all along. I was somewhat peeved she didn't say anything before but I also understand the school stipulations. I continued taking her to school 30 minutes before school to meet her sensory diet. Obviously what I was doing with her was working by the end of the school year she recieved an award for being the best reader out of her kindergarten class. She was not spitting her food out as often and she quit spinning entirely. Her social skills were still immature but that came from the Asperger's. She is now 6 (7 one month from today) and goes to a different school and is in the first grade. She is in a very small school. I am not pleased with her current services because the teacher has never heard of Asperger's or SID. She attends speech therapy at school 2 days a week for 15 minutes just like at her last school. She also has OT now- with a little arm pulling from myself at the IEP meeting with the other members. I have not enrolled her into anything outside the school except with what we do at home. She indulges in her sensory diet on her own alot of the time. She lifts up the couch at random times and still carries around her pellet-filled dogs (an obsession she has had since 1 1/2- no dolls ever!) with her. The biggest challenge she has still not overcome is her intense hatred towards clothes!! I leave you with the best for last. She will not wear socks, underwear, blue jeans, any shirts with buttons or hoods. I have to cut out all tags or she will cry until they are gone. Every morning she is very sensitive to any change in texture. Sometimes I will bathe her the nite before and put on wrinkle-free clothing so she doesn't have to change in the morning. She hates her hair and wishes she were bald. At times she balls because her hair drives her crazy. Down or in a pony tail it doesn't matter she hates it and wants it to go away. My princess is half latina and has a head full although it is cut short. I could brush her for an hour and she would still be upset about the "lines" as she puts it on her clothing (seams). The sun and light in the morning really upsets her and the lights must be off and the windows shut. As the morning progresses she can handle more and more light. Now these are the things that get progressively worse and the stuttering can be very intense at times of emotional distress. Overall, I feel the best thing she can recieve for her sensory diet is the tightest hug from the ones who love her. I can feel her body relax as she is held so very close to me and she shuts out the sounds that distress her and focuses on the beat of my heart and the smell of my skin. I feel God put us togeather for a reason. I always shunned affection and touch and now embrace it for it is the need of my beautiful girl, Carlen Jazmin Lazcano.Pieces"
Hi, I am a mom to 2 great kids a 16 year old daughter, and an 8 year old son. My son was born with Autism. When my son was an infant we knew something was different, but hard to place a finger on. As he reached the 12-15 month mark things went CRAZY he was a self abuser and that was tough. We got into the system at about 18 months and were able to get some awesome early intervention. I have been very fortunate in the group of peers I have met on this journey, but the one thing that is lacking for our community is a parent group, and as a parent I know that you feel like you are the only one who is dealing with things and you convince yourself that your nuts and the your whole family is losing its mind when indeed it is just a common reaction to dealing with a child or children with special needs.
I have two young boys ages 4 and 6. My oldest son had always been different than other children. He had a much higher vocabulary and would say and do the oddest things. At first we thought it was really cute, until he had to start interacting with other children. He was kicked out of 5 daycares for behavior issues and we began to suspect ADHD. So when he started kindergarden and spent 4 out of 5 days with the security guard we decided it was time to have him evaluated. We knew that he wasn't hyperactive, but suspected problems with attention. We were grasping at straws. When the psychologist came back with a suspected diagnosis of Asperger's Syndrome we were shocked. Within the next few months we recieved the official diagnosis and we have come to accept and even embrace this syndrome. Yes our son may not understand certain social cues, but he is a true leader and a tough little man.
