By the grace of god this is not one of Nicky's harmful behaviors. Lord know's we have had dental challenges galore, but not this. When I came across this I instantly envisioned how hard this could be on both kids and parents, so I am passing it along.
The Center for Autism and Related Disorders Publishes Study on Effective Treatment for Teeth Grinding in Young Children with Autism
Los Angeles, CA – January 25, 2010 The Center for Autism and Related Disorders, Inc. (CARD) research study, “Evaluation of a Multi-componentIntervention for Diurnal Bruxism in a Young Child with Autism,” finds the combination of vocal and physical cueing can effectively treat teeth grinding in young children with autism. The Journal of Applied Behavior Analysis has published the findings in its current issue.
The study implemented a multi-component intervention, consisting of a vocal and a physical cue to decrease rates of bruxism. A partial component analysis suggested that the vocal cue was only effective at decreasing levels of bruxism when paired with a simultaneous physical cue.
Bruxism consists of forcefully grinding one’s teeth together. Chronic nocturnal (night-time) or diurnal (daytime) bruxism can have many negative effects for the person engaging in the behavior, including abnormal wear on the teeth, damaged gum and bone structures, facial pain, and tooth sensitivity.
Previous research on the treatment of diurnal bruxism has often used aversive procedures (for example, brief application of ice to the cheeks or chin in response to teeth-grinding) or the use of protective devices, such as occlusal splints (plastic devices placed in the mouth that prevent teeth from grinding together).
A far less intrusive option is the use of a combined vocal and physical cueing procedure, which CARD used in its study. CARD treated the bruxism of “Abby,” a 6-year-old girl with autism. All sessions conducted for the study were embedded within the girl’s ongoing home-based Applied Behavior Analysis (ABA) therapy sessions. The treatment CARD used was a combination of vocal and physical prompting procedures.
Each time that Abby began grinding her teeth together, her ABA therapist implemented a vocal prompt by asking Abby to say, “Ahh,” (a behavior that was incompatible with grinding her teeth), while simultaneously physically prompting her to open her mouth by using one finger to apply light pressure to her chin. The treatment successfully reduced Abby’s bruxism.
In order to determine whether it would be possible to eliminate the physical prompt, therefore making the procedure easier to implement and less intrusive, CARD discontinued the physical prompt and implemented the vocal prompt only.
Unfortunately, the behavior returned to high levels and so the physical prompt was reinstated, again successfully decreasing the behavior. Follow up data were also collected for three weeks, one time per week, and showed that the treatment maintained low levels of bruxism.
"We were excited to find a treatment that worked for Abby’s bruxism, a behavior that is often difficult to treat and one that she had been engaging in for a long time,” says CARD Researcher Emily Barnoy, MA. “It was also encouraging to demonstrate that the procedure could be implemented successfully in a real-life setting (her regular therapy sessions) and that it did not interfere with her other ongoing skill acquisition programs.”
Monday, January 25, 2010
Saturday, January 23, 2010
Recommendations for Treating GI Tract Symptoms in Children With Autism Issued
A new protocol was released with recommendations for treating GI Tract issues in children with Autism. This is good news for all of us who have left GI doctor's offices with no answers no solutions to help our kids. Nicky's tummy problems began before his onset of Autism. They began as soon as we got home from the hospital. He cried all the time afer he ate and the doctors thought he was having an allergic reaction to milk. They had me stop nursing, feed him special formulas, return to nursing, then we tried soy. Back and forth one thing after another and in the end I went back to breast feeding. Nicky never stopped crying, it wasn't the milk. He cried so much he ended up with a herniated belly button. It was hell! He finally seemed to get better and then he got diarrhea, which lasted for two years and NOT one doctor knew how to stop it. They would test him for everything including Celiac disease the results were non conclusive.
After Nicky's autism diagnosis I remember one of the the most accomplished pediatric gastrointernologist in the country saying to me after running tests on Nicky, "I've run all the tests we have, they don't tell me anything. I've seen this in other children with Autism, but I have no answers. I am sorry."
After two years of no solutions we found our way to DR. Jacqueline McCandless - a retired Neurologist/Psychiatrist who's grandchild had been diagnosed with ASD - she explained that the diarrhea was the result of inflamed intestines and we had to bring down the inflammation and let his intestines heal, which in turn would stop the diarrhea. With her guidance we tried a protocol of diet change, absorb able supplements and medications to stop Nicky's diarrhea and it worked.
I am sharing this new potocol in hopes that other kiddo's will not have to suffer as much as Nicky.
New Reports from Pediatrics on Autism and GI Symptoms
Monday January 4, 2010
Two new reports will soon be available through the American Association of Pediatrics. They include a consensus statement and recommendations for treating gastrointestinal issues in children with autism, and they are being heralded as landmark papers by a surprising range of autism organizations.
The papers are not yet available online, which makes it a bit tough to know precisely what they say. But based on press releases from the Autism Society of America, Autism Speaks and the Autism Research Institute, it seems that the findings are really quite straightforward and unsurprising:
People with autism sometimes have gastrointestinal issues.
Lack of communication skills may make it difficult for people with autism to communicate their discomfort.
When parents or caregivers suggest that such issues exist, pediatricians should take them seriously, conduct appropriate tests, and, if issues do exist, pediatricians should provide appropriate treatment.
A person with autism who is in pain or discomfort as the result of GI issues may exhibit behaviors that are related to the GI issues. When the pain or discomfort ends as a result of appropriate treatment, it's likely that those behaviors will lessen or cease.
Proper nutrition is as important for people with autism as it is for anyone else.
It is unlikely in the extreme that "leaky gut" or other gastrointestinal issues cause or lead to autism spectrum disorders.
It would be a good idea to do more research into the prevalence of GI issues in people with autism.
What is, perhaps, a bit more surprising, is the very different interpretations placed on the publications by institutions with differing agendas and points of view. While most of the media is heading their articles on these reports with banners like Evidence lacking for autism diets, panel says, the Autism Research Institute (creator and promoter of the biomedical DAN! protocol for autism treatment) sees these reports very differently. In their press release, they state:
A causal relationship between gastrointestinal disorders and the behavioral features of children with autism spectrum disorder has been acknowledged for years by parents caring for those affected, yet dismissed by mainstream medicine. A landmark paper, Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children with ASDs, a consensus report published this week in Pediatrics, is an important step forward in closing this gap. Acknowledging that certain behavioral manifestations of patients with ASD such as self-injury and poor sleep might have a GI basis is the first step toward achieving substantive therapies.
In fact, so far as I'm aware, no one has ever denied that people with autism are as likely as anyone else to have gastrointestinal issues. Nor has anyone ever denied that such issues would likely underlie some apparently autistic behaviors. What has been and is questioned is whether there is any causal link between GI issues and autism. While ARI and some other organizations continue to say that there is, the AAP continues to say otherwise, asserting that there is no evidence at this point to support the idea that GI issues lead to autism.
Autism and Gastrointestinal Issues
Is There a Connection Between GI Issues and Autism?
Special Diets and Autism
UPDATE:
Twyla, a regular contributor to this site, notes that the report entitled Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report is now available online. Here is the abstract:
Autism spectrum disorders (ASDs) are common and clinically heterogeneous neurodevelopmental disorders. Gastrointestinal disorders and associated symptoms are commonly reported in individuals with ASDs, but key issues such as the prevalence and best treatment of these conditions are incompletely understood. A central difficulty in recognizing and characterizing gastrointestinal dysfunction with ASDs is the communication difficulties experienced by many affected individuals. A multidisciplinary panel reviewed the medical literature with the aim of generating evidence-based recommendations for diagnostic evaluation and management of gastrointestinal problems in this patient population. The panel concluded that evidence-based recommendations are not yet available. The consensus expert opinion of the panel was that individuals with ASDs deserve the same thoroughness and standard of care in the diagnostic workup and treatment of gastrointestinal concerns as should occur for patients without ASDs. Care providers should be aware that problem behavior in patients with ASDs may be the primary or sole symptom of the underlying medical condition, including some gastrointestinal disorders. For these patients, integration of behavioral and medical care may be most beneficial. Priorities for future research are identified to advance our understanding and management of gastrointestinal disorders in persons with ASDs.
Also posted is the report on Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children With ASDs, along with its abstract:
Children with autism spectrum disorders (ASDs) can benefit from adaptation of general pediatric guidelines for the diagnostic evaluation of abdominal pain, chronic constipation, and gastroesophageal reflux disease. These guidelines help health care providers determine when gastrointestinal symptoms are self-limited and when evaluation beyond a thorough medical history and physical examination should be considered. Children with ASDs who have gastrointestinal disorders may present with behavioral manifestations. Diagnostic and treatment recommendations for the general pediatric population are useful to consider until the development of evidence-based guidelines specifically for patients with ASDs.
After Nicky's autism diagnosis I remember one of the the most accomplished pediatric gastrointernologist in the country saying to me after running tests on Nicky, "I've run all the tests we have, they don't tell me anything. I've seen this in other children with Autism, but I have no answers. I am sorry."
After two years of no solutions we found our way to DR. Jacqueline McCandless - a retired Neurologist/Psychiatrist who's grandchild had been diagnosed with ASD - she explained that the diarrhea was the result of inflamed intestines and we had to bring down the inflammation and let his intestines heal, which in turn would stop the diarrhea. With her guidance we tried a protocol of diet change, absorb able supplements and medications to stop Nicky's diarrhea and it worked.
I am sharing this new potocol in hopes that other kiddo's will not have to suffer as much as Nicky.
New Reports from Pediatrics on Autism and GI Symptoms
Monday January 4, 2010
Two new reports will soon be available through the American Association of Pediatrics. They include a consensus statement and recommendations for treating gastrointestinal issues in children with autism, and they are being heralded as landmark papers by a surprising range of autism organizations.
The papers are not yet available online, which makes it a bit tough to know precisely what they say. But based on press releases from the Autism Society of America, Autism Speaks and the Autism Research Institute, it seems that the findings are really quite straightforward and unsurprising:
People with autism sometimes have gastrointestinal issues.
Lack of communication skills may make it difficult for people with autism to communicate their discomfort.
When parents or caregivers suggest that such issues exist, pediatricians should take them seriously, conduct appropriate tests, and, if issues do exist, pediatricians should provide appropriate treatment.
A person with autism who is in pain or discomfort as the result of GI issues may exhibit behaviors that are related to the GI issues. When the pain or discomfort ends as a result of appropriate treatment, it's likely that those behaviors will lessen or cease.
Proper nutrition is as important for people with autism as it is for anyone else.
It is unlikely in the extreme that "leaky gut" or other gastrointestinal issues cause or lead to autism spectrum disorders.
It would be a good idea to do more research into the prevalence of GI issues in people with autism.
What is, perhaps, a bit more surprising, is the very different interpretations placed on the publications by institutions with differing agendas and points of view. While most of the media is heading their articles on these reports with banners like Evidence lacking for autism diets, panel says, the Autism Research Institute (creator and promoter of the biomedical DAN! protocol for autism treatment) sees these reports very differently. In their press release, they state:
A causal relationship between gastrointestinal disorders and the behavioral features of children with autism spectrum disorder has been acknowledged for years by parents caring for those affected, yet dismissed by mainstream medicine. A landmark paper, Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children with ASDs, a consensus report published this week in Pediatrics, is an important step forward in closing this gap. Acknowledging that certain behavioral manifestations of patients with ASD such as self-injury and poor sleep might have a GI basis is the first step toward achieving substantive therapies.
In fact, so far as I'm aware, no one has ever denied that people with autism are as likely as anyone else to have gastrointestinal issues. Nor has anyone ever denied that such issues would likely underlie some apparently autistic behaviors. What has been and is questioned is whether there is any causal link between GI issues and autism. While ARI and some other organizations continue to say that there is, the AAP continues to say otherwise, asserting that there is no evidence at this point to support the idea that GI issues lead to autism.
Autism and Gastrointestinal Issues
Is There a Connection Between GI Issues and Autism?
Special Diets and Autism
UPDATE:
Twyla, a regular contributor to this site, notes that the report entitled Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report is now available online. Here is the abstract:
Autism spectrum disorders (ASDs) are common and clinically heterogeneous neurodevelopmental disorders. Gastrointestinal disorders and associated symptoms are commonly reported in individuals with ASDs, but key issues such as the prevalence and best treatment of these conditions are incompletely understood. A central difficulty in recognizing and characterizing gastrointestinal dysfunction with ASDs is the communication difficulties experienced by many affected individuals. A multidisciplinary panel reviewed the medical literature with the aim of generating evidence-based recommendations for diagnostic evaluation and management of gastrointestinal problems in this patient population. The panel concluded that evidence-based recommendations are not yet available. The consensus expert opinion of the panel was that individuals with ASDs deserve the same thoroughness and standard of care in the diagnostic workup and treatment of gastrointestinal concerns as should occur for patients without ASDs. Care providers should be aware that problem behavior in patients with ASDs may be the primary or sole symptom of the underlying medical condition, including some gastrointestinal disorders. For these patients, integration of behavioral and medical care may be most beneficial. Priorities for future research are identified to advance our understanding and management of gastrointestinal disorders in persons with ASDs.
Also posted is the report on Recommendations for Evaluation and Treatment of Common Gastrointestinal Problems in Children With ASDs, along with its abstract:
Children with autism spectrum disorders (ASDs) can benefit from adaptation of general pediatric guidelines for the diagnostic evaluation of abdominal pain, chronic constipation, and gastroesophageal reflux disease. These guidelines help health care providers determine when gastrointestinal symptoms are self-limited and when evaluation beyond a thorough medical history and physical examination should be considered. Children with ASDs who have gastrointestinal disorders may present with behavioral manifestations. Diagnostic and treatment recommendations for the general pediatric population are useful to consider until the development of evidence-based guidelines specifically for patients with ASDs.
Saturday, January 16, 2010
Nicky's first day of a Team Sport - Lookout Basketball
Today was Nicky's first day on a basketball league and it was fantastic! It was so exciting, me and my boy at his first day of a team sport...WOW. He doesn't know how to play, but it didn't matter he had a great time running back and forth, up and down the court. He got three chances to shoot and we were both grinning from ear to ear! Everyone tell's me he'll be playing like a pro in a few weeks :) LOL. I'm just happy he was there, in the game.
Tiny back story a parent told me today. Its a small league run by volunteer coaches. The head coach used to coach a traditional boys team, and one of the boys had a sister with special needs. Every week this young girl would yell "coach when do I get to play". She apparently asked this question all season. At the end of the season the coach said, get a team together an I'll coach you. This began a team of kids with all types of disabilities that has now grown to over 40 kids at a local park. The coach volunteers his time and he is phenomenal. He was so excited to have us, I felt like Nicky was first draft choice, playing for the Lakers.
Thank God for the people who do, because they care and because they can. Thank you Julius for getting little man on the court!
Note: Many of our unique kids with ASD have barriers to being able to participate in team sports. For some kids they can't handle the loud noise. Other's can't process the language fast enough to follow commands that are essential to play, some don't have the motor skills and others don't have the ability to reference or anticipate other players actions. Nicky just can't stay focused and he doesn't anticipate others. I am sure he will get hit by many a basket ball while he's looking the other direction..or just jumping up and down thinking about what he wants to do next. BONK!!! When he roller skates, I pull him around the rink, he doesn't look at where he is going, his body goes one way while his eye's are looking all around. He's a danger on wheels, but we keep trying. Don't see a drivers license in his future!
Friday, January 15, 2010
Anger & Ignorance School Inclusion Solution - Part II The Good Part
I just read a statistic that only 1/3 of the children diagnosed with ASD also suffer from mental retardation. I have not been able to verify it, but it does seem to line up with what I see. Nicky has his share of deficits including severe language processing difficulties, sensory challenges and weak social skills. But he is a smart boy who does best surrounded by typical peers. For that reason I have always been committed to full inclusion. It's a battle because the system is not set up or funded to serve the growing ASD population and everyone is learning, teachers, administrators, aids and the students. So every step is a journey complete with uncharted territory and daily revelations.
Nicky began middle school this year. He's enrolled in a magnet program and is fully included in general ed. This is not our local school so he began 6th grade with all new classmates and teachers. Earlier this year a student in Nicky's class lost it when she believed Nicky had intentionally spit on her. Those of us who know Nicky knew that he did not spit on her intentionally. It was an accident. Most likely he was doing his stemming behavior; jumping up and down making noises and he drooled on her. Had this type of accident happened between two typical peers it would have most likely been handled with with a simple apology. But because so few people at the school understand autism or knew Nicky the event took on a life of it's own upsetting kids, aids, parents and teachers.
This post is not to revisit what happened that day, it's about how something that looked and felt really bad turned out to be an amazing opportunity. If you want to you can read about what happened that day in an earlier post called Anger & Ignorance School Inclusion Solution Part 1.
Following the "Spitting" incident, myself and an Autism Specialist scheduled a time to talk to Nicky's classmates and to do an intro to ASD. This is a new school and our goal was to dispell myths about ASD, give the kids some basic info and a forum to ask their questions and at the same time his teachers could listen in and learn too.
When I arrived at school I looked cool on the outside, but I was nervous. Nicky's elementary school kids had known him since first grade. They were liked Nicky. These are middle school kids at the stage where it's so important to impress others and fit in; they are new to Nicky and I really didn't know what to expect. I only prayed that my little man had not become the school leper. I knew talking was the right thing to do for Nicky the teachers and the kids if we wanted them to see him for who he is beyond his autism. But I had no idea how the kids would respond. Would they talk openly, would they inadvertently say things about Nicky that would hurt my feelings, would they be cruel, indifferent, kind, curious or polite? Would I be able to respond with kindness if I heard something hurtful. Would I be able to reach outside of myself and remember that ANYTHING they say, good or bad is good because it creates the opportunity to have a conversation. Would I take everything personally? Would my every emotion be written all over my face exposing my feelings if someone said something that hit a nerve?
My worries were for naught! The specialist was great. Before we connected with the kids she asked that Nicky not participate. She wanted the kids to be able to speak freely and she didn't want to risk making Nicky feel bad. I agreed, and then we went in the classroom. She did not begin by introducing me, instead she went right into the conversation by asking what the kids knew about autism? What did they think it was? What had they heard? Some of the kids gave really good answers far beyond their years, and others were only able to repeat the myths. But they all seemed to talk openly and freely. Next she introduced me, Nicky's mom by saying "Nickys mom is here because she really wants to answer your questions and help you to get to know Nicky". I got the look I typically get from kids. They look at me, slightly puzzled as if to say - and others have said - You're Nicky's mom?. I often think that on some level the kids figured that kids with autism, came from parents with autism and not from a normal looking mom. They genuinely seem surprised to see me, it's like a light bulb goes off "special needs kids come from normal mom's. Interesting". The kids were asked what did they notice about Nicky (This is the moment when I did my best to freeze a casual look on my face when I was actually fearful about what might be said.) The kids suprised me as the enthusiaticaly raised thier hands and making comments; Nicky is always happy, he love animals, he's funny, he's aways in a good mood. I signed a deep breath of relief.
Then we moved on to learn what they knew, what did they thought autism was, had they had heard about autism, did they know anyone with Autism? Turned out that about 15% of the children did know someone with autism (other than Nicky). The children had lot's of accurate pieces of information and lot's of inaccurate pieces of information consistent with "autism myths" that float around society. Next we jumped into an Autism 101 introduction; We let the kids know that Autism is not contagious, it's not caused my mom's who don't pay attention to their babies, all people with autism are not mentally retarded, they want and need friends just like everyone else. People with autism are individuals and are not all the same, just like everyone else.
The kids were amazing they shared their perspectives and listened closely to ours. Their questions were thoughtful, they wanted to know; How I felt when Nicky was diagnosed? Was autism caused by vaccines? Was Nicky considered low or high functioning autistic? How hard was it to care for him? Does he get along with his sister? What do we do as a family? How did I know something was wrong? Do you think Nicky wants us to treat him like we treat the other kids? If we are behind him and we are talking to him, can he understand us?
These wonderful young minds blew me away. I was not prepared for such insightful questions from 6th graders! They were interested and wanted to learn. When it was time to leave some kids came up to me and wanted to ask me more questions about Nicky. We were shattering myths and the kids saw a new side of Nicky, and they were no longer afraid.
Our talk did not convert any of the kids into Nicky's best friends and no kids have volunteered to come to our house and hang out with him. And I didn't expect it would. But it did make things better at school because they are not afraid of him, they understand him a little better and they care a little more.
There is lots of information on line about how to talk to typical children about autism. If anyone wants my resources...leave a comment and I'll dig them out.
Nicky began middle school this year. He's enrolled in a magnet program and is fully included in general ed. This is not our local school so he began 6th grade with all new classmates and teachers. Earlier this year a student in Nicky's class lost it when she believed Nicky had intentionally spit on her. Those of us who know Nicky knew that he did not spit on her intentionally. It was an accident. Most likely he was doing his stemming behavior; jumping up and down making noises and he drooled on her. Had this type of accident happened between two typical peers it would have most likely been handled with with a simple apology. But because so few people at the school understand autism or knew Nicky the event took on a life of it's own upsetting kids, aids, parents and teachers.
This post is not to revisit what happened that day, it's about how something that looked and felt really bad turned out to be an amazing opportunity. If you want to you can read about what happened that day in an earlier post called Anger & Ignorance School Inclusion Solution Part 1.
Following the "Spitting" incident, myself and an Autism Specialist scheduled a time to talk to Nicky's classmates and to do an intro to ASD. This is a new school and our goal was to dispell myths about ASD, give the kids some basic info and a forum to ask their questions and at the same time his teachers could listen in and learn too.
When I arrived at school I looked cool on the outside, but I was nervous. Nicky's elementary school kids had known him since first grade. They were liked Nicky. These are middle school kids at the stage where it's so important to impress others and fit in; they are new to Nicky and I really didn't know what to expect. I only prayed that my little man had not become the school leper. I knew talking was the right thing to do for Nicky the teachers and the kids if we wanted them to see him for who he is beyond his autism. But I had no idea how the kids would respond. Would they talk openly, would they inadvertently say things about Nicky that would hurt my feelings, would they be cruel, indifferent, kind, curious or polite? Would I be able to respond with kindness if I heard something hurtful. Would I be able to reach outside of myself and remember that ANYTHING they say, good or bad is good because it creates the opportunity to have a conversation. Would I take everything personally? Would my every emotion be written all over my face exposing my feelings if someone said something that hit a nerve?
My worries were for naught! The specialist was great. Before we connected with the kids she asked that Nicky not participate. She wanted the kids to be able to speak freely and she didn't want to risk making Nicky feel bad. I agreed, and then we went in the classroom. She did not begin by introducing me, instead she went right into the conversation by asking what the kids knew about autism? What did they think it was? What had they heard? Some of the kids gave really good answers far beyond their years, and others were only able to repeat the myths. But they all seemed to talk openly and freely. Next she introduced me, Nicky's mom by saying "Nickys mom is here because she really wants to answer your questions and help you to get to know Nicky". I got the look I typically get from kids. They look at me, slightly puzzled as if to say - and others have said - You're Nicky's mom?. I often think that on some level the kids figured that kids with autism, came from parents with autism and not from a normal looking mom. They genuinely seem surprised to see me, it's like a light bulb goes off "special needs kids come from normal mom's. Interesting". The kids were asked what did they notice about Nicky (This is the moment when I did my best to freeze a casual look on my face when I was actually fearful about what might be said.) The kids suprised me as the enthusiaticaly raised thier hands and making comments; Nicky is always happy, he love animals, he's funny, he's aways in a good mood. I signed a deep breath of relief.
Then we moved on to learn what they knew, what did they thought autism was, had they had heard about autism, did they know anyone with Autism? Turned out that about 15% of the children did know someone with autism (other than Nicky). The children had lot's of accurate pieces of information and lot's of inaccurate pieces of information consistent with "autism myths" that float around society. Next we jumped into an Autism 101 introduction; We let the kids know that Autism is not contagious, it's not caused my mom's who don't pay attention to their babies, all people with autism are not mentally retarded, they want and need friends just like everyone else. People with autism are individuals and are not all the same, just like everyone else.
The kids were amazing they shared their perspectives and listened closely to ours. Their questions were thoughtful, they wanted to know; How I felt when Nicky was diagnosed? Was autism caused by vaccines? Was Nicky considered low or high functioning autistic? How hard was it to care for him? Does he get along with his sister? What do we do as a family? How did I know something was wrong? Do you think Nicky wants us to treat him like we treat the other kids? If we are behind him and we are talking to him, can he understand us?
These wonderful young minds blew me away. I was not prepared for such insightful questions from 6th graders! They were interested and wanted to learn. When it was time to leave some kids came up to me and wanted to ask me more questions about Nicky. We were shattering myths and the kids saw a new side of Nicky, and they were no longer afraid.
Our talk did not convert any of the kids into Nicky's best friends and no kids have volunteered to come to our house and hang out with him. And I didn't expect it would. But it did make things better at school because they are not afraid of him, they understand him a little better and they care a little more.
There is lots of information on line about how to talk to typical children about autism. If anyone wants my resources...leave a comment and I'll dig them out.
Saturday, January 2, 2010
A house without Evyn....almost Unimaginable
Evyn and I have talked about her going off to college and for years she told me "I'm not going far I want to stay here". I've always said, you'll go where it's best for you to go based on what you want to do, not based on staying near home. Easy when she was 10, a little rougher now that the time is drawing near. Today Evyn left on a road trip to visit Stanford with two other girls and reality got a jump start! As told a friend where she was going, my friend began to talk about things I would need to do to make the adjustment. I could feel my stomach get tight and I didn't want to think about it and I said "Enough! I can only do this one day at a time. I'll do it, I'll be okay, but I still have a little more than a year to get adjusted".
I will adjust because I know that moving away to go to college is what's best for her. She is a girl who's life has been shaped by living with me and a disabled sibling. She needs an opportunity to get perspective on the world, to get out of the house, to be free of the stress of living with Autism and to learn how to have a Nicky and Mom free existence. Evyn needs and deserves the opportunity to become her own person without the guilt that comes with worrying about us.
Before she left we talked about how hard it will be for me when she goes away. I couldn't begin to cover my feelings on this one. She is the one who say's "Good Night Mom, I love" and she is the one who tells me to stop when I am doing to much, or to take it easy when I'm sick. She is the one who keeps a mirror in front of me that has me always trying to do better. She's the one who watches her brother so I can run to the store the movies or take a bath, she is the one who I connect with, so yes it will be hard. At the same time she knew I was telling the truth when I said none of that is more important to me that the joy I am going to feel as I watch her build her own life.
I am reminded that courage is "Not the lack of fear but the ability to act in spite of the fear". We are connected and she brings so much joy,compassion, support, concern, pride, perspective, laughter, sunshine, purpose and balance into my life in a way that only she can. It's hard to imagine how our life will be without her here, the only thing harder would be to imagine I had raised a girl who didn't get the opportunity to be the best that she could be. I'm excited for her.
I will adjust because I know that moving away to go to college is what's best for her. She is a girl who's life has been shaped by living with me and a disabled sibling. She needs an opportunity to get perspective on the world, to get out of the house, to be free of the stress of living with Autism and to learn how to have a Nicky and Mom free existence. Evyn needs and deserves the opportunity to become her own person without the guilt that comes with worrying about us.
Before she left we talked about how hard it will be for me when she goes away. I couldn't begin to cover my feelings on this one. She is the one who say's "Good Night Mom, I love" and she is the one who tells me to stop when I am doing to much, or to take it easy when I'm sick. She is the one who keeps a mirror in front of me that has me always trying to do better. She's the one who watches her brother so I can run to the store the movies or take a bath, she is the one who I connect with, so yes it will be hard. At the same time she knew I was telling the truth when I said none of that is more important to me that the joy I am going to feel as I watch her build her own life.
I am reminded that courage is "Not the lack of fear but the ability to act in spite of the fear". We are connected and she brings so much joy,compassion, support, concern, pride, perspective, laughter, sunshine, purpose and balance into my life in a way that only she can. It's hard to imagine how our life will be without her here, the only thing harder would be to imagine I had raised a girl who didn't get the opportunity to be the best that she could be. I'm excited for her.
Sunday, December 27, 2009
The Day After....
This year the day after is good. This is the only time I can remember my biggest after Christmas wish was NOT time to recover from the holidays. I cooked Christmas din din and it was easy and fun. My sister has been sick, my mom had hurt her back, my niece is going through a divorce, with all of that as a background all that mattered was having my fabulous precious imperfect family all in once place. The last two days I've been hanging out and playing with the kids. There is no stress, no thoughts of what's next, just now, REALLY!
I'm loving the downtime...well as down as we get in the Jones house. I'm hoping this is a signal for life to come in the new decade!
It just hit me, I really am living in the moment. I wonder which "A" I need to thank, age or autism?
I'm loving the downtime...well as down as we get in the Jones house. I'm hoping this is a signal for life to come in the new decade!
It just hit me, I really am living in the moment. I wonder which "A" I need to thank, age or autism?
Friday, December 25, 2009
A "Typical" Christmas Morning
I love Christmas! Nicky woke up at 3:00 am went downstairs and began opening presents. I leaped out of bed when I realized what was happening. His sister heard me yell "Nicky!" she woke up and screamed "Nicky you better not of opened my presents or I will kill you!!". I got downstairs to see Nicky sitting next to the tree in a pile of opened presents....ALL Of WHICH WERE HIS. A real Christmas Miracle. Nicky had taken the time to read who the gifts were to and he only opened his. That was amazing and once again Evyn missed out on an opportunity to kill her brother.
Merry Christmas!!!
Merry Christmas!!!
Thursday, December 24, 2009
Single Christmas
I miss the good parts of how Christmas used to be. When both mom and dad got all the Christmas gifts ready for the kids and went to Christmas events. I miss that moment when the kid's watched because they wanted to see what Daddy gave Mommy.
Donna SNAP OUT OF IT. That's what happens when I look at life though the rear view mirror, it gets distorted. Our holidays in the later years were gardly perfect, but there were still some great moments.
Ironically during the holidays the good memories are inflated as the bad memories fade, reminding how far away I am from the picture I imagined. For the kids, especially Evyn, it's the idea that her family is not complete. For Nicky I'm not sure. He asked for Dad ALOT over the past month and I have no idea if the holidays are involved.
I don't linger in this place. I just acknowledge it then bonk myself upside my head, and get back to what is really true and I move on. Not easy but I've had practice. The truth is, I am here with two of the most terrific kiddos on the planet. I am healthy, we are healthy. We have a home, joy, food and wonderful people in our life. I am blessed to have my family nearby to share not only the holidays but every day of our lives, not just December 25 :)
Donna SNAP OUT OF IT. That's what happens when I look at life though the rear view mirror, it gets distorted. Our holidays in the later years were gardly perfect, but there were still some great moments.
Ironically during the holidays the good memories are inflated as the bad memories fade, reminding how far away I am from the picture I imagined. For the kids, especially Evyn, it's the idea that her family is not complete. For Nicky I'm not sure. He asked for Dad ALOT over the past month and I have no idea if the holidays are involved.
I don't linger in this place. I just acknowledge it then bonk myself upside my head, and get back to what is really true and I move on. Not easy but I've had practice. The truth is, I am here with two of the most terrific kiddos on the planet. I am healthy, we are healthy. We have a home, joy, food and wonderful people in our life. I am blessed to have my family nearby to share not only the holidays but every day of our lives, not just December 25 :)
Plop Plop Fizz Fizz the sound of crashing expectations
It's christmas eve morning. Nicky is sick,cranky and screaming. Evyn is just cranky. It's 9:00 and she is letting me know - in no uncertain terms - that she is angry about going to celebrate Christmas Eve with the family. I suggested that she just wait on being angry until the time get's a little closer and enjoy her day. She just glared. Oh well! Yahoo to be a teen.
Wednesday, December 23, 2009
Assisted Living...Nicky and Me
Single mom, son with autism. I have not a clue what the future holds. Will Nicky be able to live with me until I pass away? Will I be able to care for him? Or we end up as room mates in assisted living. There's a thought! LOL...please.
Subscribe to:
Posts (Atom)
