My book is available to order in print. Get your copy now from amazon
http://www.amazon.com/dp/148027948X/ref=cm_sw_r_fa_dp_xxcQqb1AH19AA
Showing posts with label Fragile X. Show all posts
Showing posts with label Fragile X. Show all posts
Saturday, 17 November 2012
My book is available to order in print. Get your copy now.
My book is available to order in print. Get your copy now.
https://www.createspace.com/4053993?ref=1147694&utm_id=6026
https://www.createspace.com/4053993?ref=1147694&utm_id=6026
Friday, 9 November 2012
My book is published on the amazon kindle
Hi I have published my book to the amazon kindle and it will be coming to paper back print shortly.
You can get the kindle version here
http://www.amazon.com/Living-with-Aspergers-Syndrome-ebook/dp/B00A42ADG0/
Tuesday, 6 November 2012
Spreading awareness about ASD
I really want to spread awareness I do not think their is enough info from people with Aspergers about what it is really like to live with it. People would be way more understanding of people affected by it if they new what we have to go through.
Tuesday, 16 October 2012
Another praise for my blog
from http://www.fragilexfiles.com/2012/10/a-window-open.html
Remember when Aliza wanted to know what it felt like to have Fragile X?
It's so hard to understand sensory disorder and overstimulation and how it feels for our kids. I wish every day that Zack could tell me why he screams. I wish he could have told me last night how he felt when he bit his legs and arms. I wish AJ could explain why he can't stay in group time at school, and why he gets up and runs off. Bad behavior, according to the teachers. I wonder, though. Can he help it? Is there something going on inside him, or in the classroom, that he just can't tolerate?
This week, a window opened up into the minds of people with Fragile X and autism.
His name is Jeremy Tolmie, and he has autism and Fragile X and has been posting and answering questions on the Facebook Fragile X page. His facebook page is at
https://www.facebook.com/jeremytolmieauthorpage?ref=stream
He also blogs, at
Living with autism and Fragile X
He was diagnosed with Aspergers as a teenager and recently received a Fragile X diagnosis as well. He is high-functioning enough to describe to us how he sees, hears, feels, and experiences the world. How he deals with what bothers him.
He's right there on my autism hero list, alongside Temple Grandin and Carly Fleischmann. I read everything they write. I can't get enough. I don't know if it's any different, having the combo pack of Fragile X and autism together, but I'm eating up every word this guy has to say, too.
Here are some of the things he's posted:
"I have felt for a while now that I needed to tell people about me and what it is like because I keep reading about parents trying to understand and can not. But I know exactly what is going on with their kids and just want to let them know about it."
"I never let people know that I can do something till I have to do it in front of them. I learned to read when I was 5 but could not read out loud for fear of making a mistake in the pronunciation of the words even though I could read them. I was never called that but I was never called anything other then a teachers best student because i did not ask for any help ever. the first thing I got good at writing was my name also."
I see this in my boys; sometimes I catch them doing or saying something I didn't know they could do or say, and when I comment on it, they act embarrassed. When they do something right and we praise them, sometimes they burst into tears. Having lots of attention thrust upon them is very stress-inducing. There's a fine line between praising them and stressing them out. It's taken me quite awhile to figure out how to stay balanced on that line.
"I struggled with potty training till I was 13 years old. I was good at home but struggled away from home especially at school. I did not like using public washrooms I did not know who else had used them and what they had done in them. I just could not get up the nerve to ask to go to the washroom at school and that had dire consequences"
Every little kid knows there's a link between how you deal with anxiety, and going to the bathroom. Not a kid exists who hasn't needed to go, in public, and been afraid they wouldn't get there in time. Almost everyone can relate to having to use the bathroom and being self conscious about everyone knowing.
Imagine that very normal anxiety in the body of someone who feels everything times 10. For every time you have had to go to the bathroom in public and been scared you would pee your pants, the Fragile X child feels it 10 times more often and 10 times more intensely.
"I really do not like to be tickled even if it feels good it feels to overwhelming and I make it stop if it goes on for more than a minute because it is too much stimulus for me to handle. I get a quick scare if I get touched and am not expecting it and will lash out at whoever touched me. I do not mean to do it it is just instinctual and can not be stopped. It is like what would you do if some one slapped you the common response is to slap back. You probably don;t even think about it you just do it it is the same with this."
This last one really made me think. It makes me think of Zack, and how aggressive he gets when people are too close to him. Lashing out when someone makes him physically uncomfortable is instinctual - he can't help doing it, it's an impulse, like the rage you feel if someone slaps you. You can't stop the anger; it rises in response to the unexpected stimuli.
I really wish the whole world could understand these things and be tolerant of people who can't control their bodies and impulsive behaviors as well as the rest of us can.
Remember when Aliza wanted to know what it felt like to have Fragile X?
It's so hard to understand sensory disorder and overstimulation and how it feels for our kids. I wish every day that Zack could tell me why he screams. I wish he could have told me last night how he felt when he bit his legs and arms. I wish AJ could explain why he can't stay in group time at school, and why he gets up and runs off. Bad behavior, according to the teachers. I wonder, though. Can he help it? Is there something going on inside him, or in the classroom, that he just can't tolerate?
This week, a window opened up into the minds of people with Fragile X and autism.
His name is Jeremy Tolmie, and he has autism and Fragile X and has been posting and answering questions on the Facebook Fragile X page. His facebook page is at
https://www.facebook.com/jeremytolmieauthorpage?ref=stream
He also blogs, at
Living with autism and Fragile X
He was diagnosed with Aspergers as a teenager and recently received a Fragile X diagnosis as well. He is high-functioning enough to describe to us how he sees, hears, feels, and experiences the world. How he deals with what bothers him.
He's right there on my autism hero list, alongside Temple Grandin and Carly Fleischmann. I read everything they write. I can't get enough. I don't know if it's any different, having the combo pack of Fragile X and autism together, but I'm eating up every word this guy has to say, too.
Here are some of the things he's posted:
"I never let people know that I can do something till I have to do it in front of them. I learned to read when I was 5 but could not read out loud for fear of making a mistake in the pronunciation of the words even though I could read them. I was never called that but I was never called anything other then a teachers best student because i did not ask for any help ever. the first thing I got good at writing was my name also."
I see this in my boys; sometimes I catch them doing or saying something I didn't know they could do or say, and when I comment on it, they act embarrassed. When they do something right and we praise them, sometimes they burst into tears. Having lots of attention thrust upon them is very stress-inducing. There's a fine line between praising them and stressing them out. It's taken me quite awhile to figure out how to stay balanced on that line.
"I struggled with potty training till I was 13 years old. I was good at home but struggled away from home especially at school. I did not like using public washrooms I did not know who else had used them and what they had done in them. I just could not get up the nerve to ask to go to the washroom at school and that had dire consequences"
Every little kid knows there's a link between how you deal with anxiety, and going to the bathroom. Not a kid exists who hasn't needed to go, in public, and been afraid they wouldn't get there in time. Almost everyone can relate to having to use the bathroom and being self conscious about everyone knowing.
Imagine that very normal anxiety in the body of someone who feels everything times 10. For every time you have had to go to the bathroom in public and been scared you would pee your pants, the Fragile X child feels it 10 times more often and 10 times more intensely.
"I really do not like to be tickled even if it feels good it feels to overwhelming and I make it stop if it goes on for more than a minute because it is too much stimulus for me to handle. I get a quick scare if I get touched and am not expecting it and will lash out at whoever touched me. I do not mean to do it it is just instinctual and can not be stopped. It is like what would you do if some one slapped you the common response is to slap back. You probably don;t even think about it you just do it it is the same with this."
This last one really made me think. It makes me think of Zack, and how aggressive he gets when people are too close to him. Lashing out when someone makes him physically uncomfortable is instinctual - he can't help doing it, it's an impulse, like the rage you feel if someone slaps you. You can't stop the anger; it rises in response to the unexpected stimuli.
I really wish the whole world could understand these things and be tolerant of people who can't control their bodies and impulsive behaviors as well as the rest of us can.
Sunday, 14 October 2012
Words of wisdom and FX
ever since I started communicating with all of you on these FX groups I have had profound insights and words of wisdom I almost think god is influencing my actions and got me to start wrighting my book then got me to join these groups then got me to tell my story to all of you. i think he wants me to help all of you understand what your children are going through.
as they say god never gives you any more then you can handle so I will be able to handle this and be the voice for your children that can not tell you what they are going through.
as they say god never gives you any more then you can handle so I will be able to handle this and be the voice for your children that can not tell you what they are going through.
The amazing FX groups
the FX groups are amazing and has helped me immensely and I am trying to repay the favour by helping all of you out as much as you all have helped me out so far.
List of Common Symptoms of FX
every one with a x is a match to me and the ones that don't could be but I don;t know. except for the female ones.
List of Common Symptoms
Here is a list of the common symptoms that may be experienced by those affected by Fragile X Syndrome. Intellectual disability of one degree or other is common to all affected individuals but other symptoms vary from person to person. Not everyone with Fragil
List of Common Symptoms
Here is a list of the common symptoms that may be experienced by those affected by Fragile X Syndrome. Intellectual disability of one degree or other is common to all affected individuals but other symptoms vary from person to person. Not everyone with Fragil
e X has the same signs and symptom or to the same degree. Affected females tend to suffer less from the symptoms present in males but may have their own particular issues.
Development Delays
Crawling x
Speech x
Sitting x
Walking x
Toilet Training x
Possible Physical Features
Chest with a “hollow” look x
A squint or “turn” in the eye x
Eyelids that tend to puffiness x
Elongated face – long forehead and jaw (more evident after puberty)
Flat feet (pes planus) x
High arched palate x
Hyper-extensible joints x
Large testicles (evident after puberty) x
Low muscle tone x
Prominent ears x
Single Palmar Crease – WIkipedia description x
Development Delays
Crawling x
Speech x
Sitting x
Walking x
Toilet Training x
Possible Physical Features
Chest with a “hollow” look x
A squint or “turn” in the eye x
Eyelids that tend to puffiness x
Elongated face – long forehead and jaw (more evident after puberty)
Flat feet (pes planus) x
High arched palate x
Hyper-extensible joints x
Large testicles (evident after puberty) x
Low muscle tone x
Prominent ears x
Single Palmar Crease – WIkipedia description x
Possible Behavioral Symptoms
Anxiety and shyness x
Attention deficit disorders and hyperactivity
Autism and autistic-like behavior * x
Chewing of Clothes
Concentration Difficulties x
Eye Contact difficulties x
Fixed interests in certain subjects x
Dislike of change in routine x
Hand biting and hand-flapping x
Hyperactivity and short attention span
Inability to control emotions x
Impulsivity x
Perseveration – repetition of the same actions or words x
Poor eye contact x
Disturbed sleep x
Tantrums or other emotional outbursts. x
* Autistic symptoms and autistic-like behaviors include many of the other symptoms listed above. x
Possible Medical Issues
Eyes – squint (strabismus ) x, long sightedness x and visual perceptual problems. x
Epilepsy (about one in four)
Ear Infections x
Hernia
Joints subject to dislocation x
Mitral Valve Prolapse – Wikipedia description
Hyper sensitivity of the senses (sound, smell, touch) x for all
Possible Symptoms common to affected females
Shyness and Moodiness
Lack of social skills
Avoidance of social contact
Depression and anxiety.
Refusing to talk in certain situations (selective mutism).
Anxiety and shyness x
Attention deficit disorders and hyperactivity
Autism and autistic-like behavior * x
Chewing of Clothes
Concentration Difficulties x
Eye Contact difficulties x
Fixed interests in certain subjects x
Dislike of change in routine x
Hand biting and hand-flapping x
Hyperactivity and short attention span
Inability to control emotions x
Impulsivity x
Perseveration – repetition of the same actions or words x
Poor eye contact x
Disturbed sleep x
Tantrums or other emotional outbursts. x
* Autistic symptoms and autistic-like behaviors include many of the other symptoms listed above. x
Possible Medical Issues
Eyes – squint (strabismus ) x, long sightedness x and visual perceptual problems. x
Epilepsy (about one in four)
Ear Infections x
Hernia
Joints subject to dislocation x
Mitral Valve Prolapse – Wikipedia description
Hyper sensitivity of the senses (sound, smell, touch) x for all
Possible Symptoms common to affected females
Shyness and Moodiness
Lack of social skills
Avoidance of social contact
Depression and anxiety.
Refusing to talk in certain situations (selective mutism).
Female Carriers
Unaffected by the symptoms above but may suffer from
Premature Menopause
Male Carriers
Older male carriers may suffer from
FXTAS – Fragile X-associated Tremor/Ataxia Syndrome
Unaffected by the symptoms above but may suffer from
Premature Menopause
Male Carriers
Older male carriers may suffer from
FXTAS – Fragile X-associated Tremor/Ataxia Syndrome
Saturday, 13 October 2012
I wear a pin about Autism
i wear a pin on my jacket of a autism support puzzle pice and symbol A. I like people to know that I am autistic so that they can see the other side of it. Most people think of autism as being the classic aloof form and don;t realize how varied the disorder is. the same goes for FXS also but it will take time for people to even know what that is.
Friday, 12 October 2012
my birth mom and finding out about ASD
you would think that someone would have noticed something was wrong and told my parents about it. But nope no one did and it was just a fluke of my birth mom dyeing of a brain tumour and for me to get checked out that I even got the DX of ASD when I did.
FX in girls
FX affects girls way less then boys because girls have 2 X chromosomes and boys only have the 1. So with girls only one of the Xs gets affected and the other one is fine so it tries to bypass the affected one. Some times it is successful for the most part and that makes them a carrier only but other times not so much and they have a milder form of the symptoms. It is the same for ASD as for FX and any other disorder that has ties to the X.
my feelings about this blog
I have felt for a while now that I needed to tell people about me and what it is like because I keep reading about parents trying to understand and can not. But I know exactly what is going on with their kids and just want to let them know about it.
Too many of you for me to live next door
their are too many of you for me to live next door to everyone so I will have to do it remotely. Thank you very much I never new that I could have such a impact on all of yours lives like I seem to be having. If I had known I would have done this a long time ago. although you might not have found it because it would have been about Autism and not FX.
I never let people know how much I Knew
I never let people know that I can do something till I have to do it in front of them. I learned to read when I was 5 but could not read out loud for fear of making a mistake in the pronunciation of the words even though I could read them. I was never called that but I was never called anything other then a teachers best student because i did not ask for any help ever. the first thing I got good at writing was my name also.
One more Praise about me
Amy Barnes wrote to me. I cant even beging to decribe how blessed i feel today to have found a man with fragile x and autism in his 30's that is high functioning n able to tell /answer questions about how it is to live with fragile x n autism ...its like i get to go inside my sons head through this man ....its a miracle really..this man was sent by god....i now have soooo much more of an understan
ding of how things probably are for my son n it breaks my heart..i feel like ive been such a jerk for lack of understanding/just not knowing...no one knows what this means to me..what this guy has to offer is not something u can look up or test for etc...hes truely amazing...a fx /autism person has learned how to speak out/ write praise god....
Tuesday, 9 October 2012
What I do for fun these days
I watch crime TV shows and medical dramas. I play virtual hockey games and watch hockey on TV. I blog about what it was like growing up as me. I read fantasy books and listen to their audio books. I play strategy games on the computer and fiddle with the computer to try and keep it in perfect working order. That is what I do these days to make me happy.
Sunday, 7 October 2012
Another Mention of my Blog
I wanted to share a blog from a wonderful gentleman I have met while on my guest of raising money for Fragile X & Autism. I think God puts you in touch with the people you need in your life. I am very grateful that I have met Jeremy (online) and can continue to learn from him. Jeremy is 30 yrs old and has Fragile X & Autism. I always wondered what it would be like to crawl inside my sweet FX/ASD babies head and now I have met someone who can help me with that. You are amazing Jeremy, keeping sharing your story. You have the power to change so many lives and to bring hope to parents all across this world. :)
Thank you sooo much for your kind and humbling words. I started to wright things down about what I have gone through and am going to get it published one day. So I thought I should get it crowd sourced first to see if it was good enough to get published and see if people would even want to read what I had to say. I am thankful that people are liking what I have to say and I am going to continue to wright more day by day. I may not be-able to get a job or keep one but I can do this so I shall and hopefully this can be my job and I can someday make some money off of it.
Saturday, 6 October 2012
I am so much like my Brother
I look, act, and seem very much like my blood brother and I only got to see him once 10 years ago. It was really freaky because we never grew up together any yet we are so much alike. He has the same mannerisms, body language, speech patterns and everything. It makes you wonder how much nurture has to do with it or if it is mostly nature. The genetic code that binds you together is stronger than anything on the planet.
My ASD DX at 17
I was 17 when I got the DX of Aspergers syndrome ASD. So for me I would have liked to have known much sooner than that. So that I could have had the proper support in school.
Sink or Swim school
I was in a sink or swim school that did not pass you if you could not do the work and get at least a 50% grade. I wanted very much to pass and stay with my classmates.
I was never better than a C student but at least I passed.
I was never better than a C student but at least I passed.
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