|Autism ParentsPage 1 of 19 (1, 2, 3, 4, 5, 6, 7, 8, 9, 10, 11, 12, 13, 14, 15, 16, 17, 18, 19)|
|I have an 8 yo son who has been diagnosed with ADHD, mild OCD, performance anxiety (atho that might be more of a generalized anxiety at the moment), and possibly Asperger's as well (his ped said ADD/ADHD and Asperger's can go hand in hand). Thing is.. this child is BRILLIANT and we all feel he's not being challenged enough at school, but because he doesn't have the ability to put down on paper what's in his head (it's a form of learning disability) he struggles with even the simple things.|
His daddy and I separated nearly 2 yrs ago, but what I do now isn't any different then what I did say 4 yrs ago when we were together and going thru his assessment. His dad never went to the drs appointments with him, never bothered to understand what's going on, was never supportive of me or my efforts to deal with him... probably one of the reasons we aren't together. He's a little bit better now, but still doesn't know the challenges we face daily.
We tried the diet (mostly dairy and wheat elimination), among other things, and none of them worked for us. What I did notice was that things that are heavily colored with artificial colors cause my son to be a lunatic... lol.. I do limit his intake of those things, and try not to allow more then 2 days in a row. Ooopss... digressing here.. hehehe..
Dating with a challenging child??? I haven't had more then 1 date with most people so it hasn't been much of an issue 'cause they don't get to know him on a personal level, only through what I share with them. I don't like the kids being involved only because they have gone thru so much in the last 2 yrs that they don't need a mom with a revolving door and a string of strangers coming and going in their lives right now. When I find someone who's worthy, then we will see how it goes. Right now I get to deal with the fallout from the boys' visiting with their daddy... takes weeks to get us all back on track.
Posted: 6/1/2006 5:51:04 AM
|With *M*, I don't prepare him for the visits until I know they are going to happen, and then I wait as long as possible. This is due in part to his anxiety. If I warned him about an upcoming visit too far in advance, I would have days of acting out even before the visit happened.|
I'm doing this parenting course at the moment and they are trying to teach us some *tools* to help us cope (btw, COPE is the name of the program) with the kids and their behaviours. There are several families with the *alphabet soup* kids, the ones with multiple diagnoses. We've talked about transitional warnings, planned ignoring, planning ahead, 1-2-3 Magic, points/reward programs to name a few. Many of them I have tried/used with some sucess over the last 5 yrs or more. The hardest one for me is planned ignoring, but I'm getting better at it.
Autism or Autism spectrum disorders are a little different then what I experience. For example... a few weeks ago *M* was having one of his infamous moments with me. I had to do some grocery shopping, and I didn't have a choice but to have the boys with me (normally I try to do it without them) and *M* was being lippy and rude to me. I explained to him that I did not appreciate the way he was talking to me, and when he was calm and ready to speak to me in a respectful way, I would be ready to listen. He pitched a world class fit, and I walked away with the younger son. Thing about *M* is that he will follow me 'cause he doesn't want to be left alone, and I wouldn't walk so far that I couldn't still be seen or couldn't get to him if necessary. Well true to form *M* followed me into the store screaming at the top of his lungs "WHY ARE YOU IGNORING ME!! AREN'T YOU LISTENING TO ME!! STOP WALKING AWAY FROM ME!!!!!" *C* and I just kept going, carrying on a nice conversation about what we were doing/going to be doing and just kept walking thru the store. I didn't respond to *M* and his screaming demands at me, but I tell you.. within about 1.5 aisles this child was calm and speaking to me in a VERY respectful tone, with excellent manners (please, thank you, etc) and being incredibly helpful with the shopping. I am sure everyone around me was thinking that I was the most horrible mother in the world, but I go in with the attitude of *I dare you* or *if you think you can do better* and so far no one has done or said anything to me.
This is something that we have been dealing with on some level since *M* was 2.5 yo. I can't say I'm an expert with this stuff, every day it's a different thing, and what worked today might not work tomorrow. I wish there was a magic wand that I could wave to make life easier on all of us. It's got to be frustrating with the kids when their needs can't be expressed clearly, either due to age or due to circumstances.
Do you guys find that you get people telling you they feel sorry for you?? My kids go to the bus stop in the morning, and the moms stand around talking while we all wait for the bus. I have one mom who is constantly telling me she feels sorry for me... and esp on the days when *M* is having a hard time, for whatever reason, cooperating/following instructions. They see but a small part of his behaviours, and I have had to physically pick him up and put him on the bus somedays, or hold him in place because his anger/behaviour is out of control. He has screamed at me and the other kids. Keep in mind, this child is probably 53-54" tall and about 75 lbs (was heavier before the meds) but when he's thrashing about he's very strong and doesn't care who he hurts in the process... I'm 5'4" so it's hard for me to physically control him (obviously I outweigh him), and some days I just don't even try. Don't feel sorry for me tho... this behaviour is only a small portion of my child. There are way more wonderful and fulfilling things that we do together, more good moments then bad ones. But it IS exhausting to deal with!!
Posted: 6/1/2006 7:38:40 PM
|I have a 7year old son with high funcitoning autism. His father still does not accept the diagnosis and places extra strain on him. He goes to see his dad everyother weekend and when he comes back he is out of wack and it takes at least a few days to get him back on track. He also suffers from insomnia and can go for weeks on a few hours sleep a night.|
SpiderHam - I have had similar issues at 2 seperate malls. One issue was very similar to yours. I carry a kid ID on me with his information and a card that states he has autism. At one mall my son was upset and was being verbally abusive to me, so I decided it was time to leave, quickly before it escalted. On the way out of the mall, an employee began yelling at my son. Saying things such as "how dare you talk to your mother that way you disrespectful little ******" Now, I am trying to walk my son out and he is quickly becoming more upset. I ask her to please leave him alone as he has autism and she is just aggrevating him. She then went on to say I was a horrible mother. This whole time I am trying to get my son out of the store and she just keeps yelling at him. Now he was become enraged and has focused his frustration on her. On the way out he kicked a display and she yelled that she was calling security. They tried to have me pay for the damages and have my son arrested. This was a big name store and I had the manager come down and talk to me after my son calmed down. There was no damage whatso ever and she was enraging my son.
Posted: 6/19/2006 7:46:59 PM
|My son also has sensory issues and it mostly has to do with loud noises also. To help my son handle this I carry ear plugs and an ipod with me at all times. If we are out watching fireworks, car shows, air shows, he wears the strongest ear plugs we can find which block out almost all noise. At movies, parades, plays, and circuses he wears noise reduction ear plugs. We also use an ipod a lot. Whenever we are in a crowded area with lots of talking, waiting in line or drs office, shopping with him in a cart, etc he can wear the ipod and listen to his music or recorded books. These little tricks have allowed him to better cope with the noise and the amount of people|
Posted: 6/20/2006 4:41:00 PM
I know what you mean. He is not coddled and he is treated just like any other kid. How many kids now days do you see with iPods, PSPs, Nintendos, or Walkmans wherever they go? I keep his time limited and he has to have them at an acceptable volume, which means he has to be able to hear us talk over the music or games. I feel that everyone should carry earplugs as hearing loss is now becoming way too common because we have grown used to louder and louder noises. My son is not allowed to hide from the world and attends regular summer camp and a school for children with behavior and emotional problems.
Posted: 6/20/2006 6:30:41 PM
|hi autism parents, first my utmost respect to all of you! i had the blessing of being trained as an ABA therapist about 10 years ago. i haven't had the chance to use the training much as i live in the country. i do work as a nanny and the oldest child at work is a very high functioning aspergers child. about 2 1/2 years ago, i adopted 2 children of my own. we have been given every diognosis known to man. after some careful observation, i found my son exhibiting symptoms of PDD. we haven't gotten an official diognosis yet but i've found treating him as i would a PDD child gets results. my daughter has been diognosed with RAD which is misunderstood or not understood at all too. i love the story of the experience at the mall with security. i have to laugh since i can relate. my 11 yr. is homicidal and destructive so i call the police who in turn call childrens services.......ON ME FOR NEGLECT!!! am i the only one that feels our public service people should be educated on some of these disorders and their behaviors? had this officer known anythoing about RAD (reactive atachment disorder) he would have known that the presence of a social worker would make my daughter's problem sooooooo much worse! also, i don't like to give advice as it sometimes sounds condisending, but network people. you need all the support you can get.|
Posted: 9/1/2006 11:08:04 AM
|I am newly single... I haven't had the experiences you all have had yet.. but the fit throwing at the store is common for us. My son is 4... midly/moderately autistic. This is a great forum for information. I usually have pictures of my kids... now I know I must ALWAYS have a picture. I'm all he's got.... what would I do if someone doubted I was his Mommy. I can't even imagine.|
Posted: 9/24/2006 10:34:35 PM
|hey folks, i have a 7 y/o little boy whom was diagnosed with PDD and Aspergers with a hint of ADD. i would like to share my story but it will have to wait untill i sleep becasue it is 1:30am and i am tired. but had to " mark" this forumas one i needed to get back to.|
Posted: 10/8/2006 7:43:24 PM
|I have a theory as to the cause of my son's autism. Yes there is a genetic aspect as I have an alergy similar to his but not as severe. The interesting thing is that the substance we are alergic to is used in many hypoalergenic products. It is propylene glycol. It is used in many hand creams and the like because it enables transfer of substances through the skin. Autism has been related to certain proteins not fully broken down in the digenstive system entering the blood stream as opiates. This is where the glutin and diary free diets come from. These opiate compounds particularly affect the sensory processing parts of the brain thus autism. The damage is done very young and does not reverse without extensive theropy. The use of propylene glycol has exploded, along with autism, and is used in some foods, medicines, and candies as well as de-icing airplanes and "environmentally friendly" antifreeze. Virtually all baby wipes use it, just read the label. I am not so sure that the alergic reaction is to the substance itself but possibly resulting from what it enables to pass through the skin or specifically the digestive system wall. Partially broken down glutin and casein could be tranfered through the digestive system because of this same property of propylene glycol. Getting a little more technical, I feel my theory actually links genetics, immune system, vaccines, secretin, and the special diet theories and treatments. I do not feel this is the cause of all autism, but could explain many of them.|
Posted: 10/8/2006 8:47:27 PM
|In places where vaccines are rare, so is propylene glycol. I am not aware of anyone else making the link to propylene glycol. I would appreciate any links. Note that I said it may not be the alergy or even if an alergy to propylene glycol exists. The property that it enables transfer of other substances through tissues could be at fault. My alergy and my son's may not be a direct reaction to the propylene glycol but due to substances that were enabled to transfer through the skin by the propylene glycol. An alergy test of pure propylene glycol could very well show negative. It would have to be paired with another substance to observe the problem. An example could be feathers treated with propylene glycol to make them soft.|
Posted: 10/10/2006 6:47:30 PM
It was more some of the diagnosis (?)
such as PDD-NOS and those types of terms. I know of ADD, ADHD, OCD and perhaps a couple of others.
I just wanted some clarification of some of the medical type abbreviations; so that I could look them up and see if I could relate. My son goes on Wed. the 11th for his assessment
PDD - Pervasive Development Disorder
NOS - not otherwise specified
LD - learning disability
AS - Asperger's Syndrome
ADD/ADHD - attention deficit disorder/attention deficit hyperactivity disorder
OCD - obsessive compulsive disorder
BP - bi-polar (manic-depressive)
OT - occupational therapist/therapy
ST - speech therapist/therapy
PT - physical therapist/therapy
SW - social worker
EA/TA - educational assistant/teacher's aide
DX - diagnosis
RX - prescription
HX - history
FTT - failure to thrive (not that this one's been used here yet)
Some that I know are used on other forums I'm on:
DH - dear/damn husband
DW - dear/damn wife
SO - signficant other
DD - dear daughter
DS - dear son
DSD/DSS - dear step daughter/son
I am sure there are others, just can't think of any..
Posted: 10/13/2006 1:36:10 AM
|This is a very interesting thread...and would like to comment on the vaccine theory...yes I believe that is the cause of the increased number of kids getting Autism and other related disorders.|
Years ago, when I was a young mom, I had an older friend who had an 18 yr old son with Autism. She had a very hard time with him because he wasnt diagnosed until he was about 16. He was very low functioning and he also was hyperactive and had touretts. (By the way she married a wonderful man who became a step father to her son)
Anyway, it was weird because she told me, in her heart she knew it was getting his shots that made him sick. When I asked her why she told me....he was about 10-11 months old and he was walking, saying a few words, and even starting to feed himself with a spoon. He was a bright normal little boy. She got him his shots...he got really sick for a few days ...and was never the same again. He was misdianosed as 'retarded' (the term they used in those days) and she went though hell.
So I did some reasearch and found out she was not the only parent to observe this type of thing. I read a book called A SHOT IN THE DARK. This book has literaly hundreds of testimonals from parents like her. One family in the book had a bright little boy who was 3 yrs old and knew his ABC's and needed to get his shots before preschool would accept him...he hadnt had any till then...and he got sick and was never the same again. Now this child has dyslexia and other learning disorders. How does that happen? The medical community denies it all...but of course they would..they would have to!
Which shot is it? The one that seems to have done the most damage is the Whooping Cough shot. Now recently (last 5 yrs or so?? not sure) they have changed this vacine type. The used to give a live vaccine...which isnt as safe. I dont know about this new one they have now for whooping cough.
Any which way it scares me. Most people dont want to hear about it and defend kids getting their shots..but I think that as parents we need to know which shots might be risky. And dont bother asking the nurse or doctor...go research it yourself. If you suspect that a shot affected your child....why would you want several more 'boosters'?
(BTW, she was the one who noticed my son (then 3) needed assesment because of his behaviour. She was dead on right. And for the last 12 yrs I have been trying to figure out just what the hell is wrong with him. Assessment after assessment. Borderline but not ADHD...rates clinicly high on conduct scales but not consistantly...might have a non-verbal learning disability...but his math scores were higher than expected... maybe he has a cognitive disability of some sort..maybe he has ODD...maybe hes normal...oops some denial creeping in. We still dont know. All these disorders seem to overlap. Im still trying to figure it out)
So yes, as a single parent, of a child who is challenging, I can relate. Good luck to all of you and know you are not alone
Posted: 10/13/2006 5:24:46 PM
|Why does this thread read 8 of 7 ? (pages...on the hyperlink?) error error|
Posted: 10/13/2006 10:29:25 PM
|"Why does this thread read 8 of 7 ? (pages...on the hyperlink?) error error"|
It has pervasive page counting disorder PPCD.
Posted: 10/13/2006 10:48:30 PM
|lol...now THAT was truly funny!|
Posted: 10/24/2006 4:51:31 PM
|This may be of help to anyone in sask canada...|
SASKATCHEWAN- new program for those of you in sask....Cognitive Disabilites Stratagy..provincial health...4.5 million dollars ...your child/youth (generaly 6-24 yrs old) needs to fit all of the following FIVE criteria
1. Significant limitations in learning and processing information (eg problem solving, learning skills, making descions, abstract reasoning)
2. Behavioral challenges that result in limited inter-personal, social and emotional functioning
3. Developmental challenges limit capacity to adapt to daily living in areas such as self care, independence at home, work or leisure.
4. Limitiations and impairments are persistant and long term
5 ...AND HAVE UNMET NEEDS
you dont even need a diagnosis at all...lots of conditions fall into the range of this program: autistic children, FASD children, ANY child with leanring/behaviour problems...doesnt matter..the program is designed to prevent children/youth with unmet needs from falling through cracks...they even have un-designated funding available to help meet a specific need if no other local agency can help with something. example...you need respite but your child is not 'low enough functioning' to qualify through current services...if its an unmet need, they can help set it up and fund it. This program works on an 'interagency basis'...linking all available organizations/ agencies toegther into a 'team' for each specific family
Its still new, some communites have coordinators set up, it isnt even provincialy wide yet.
Below is a link is a booklet about the program (the FASD support network has posted it through their website, but as I said, the program is not specific to any one disorder, autistic children may qualify if they fit the criteria)
It may be of interest to some of you..it may be of help to anyone in Saskatchewan.
Posted: 11/9/2006 7:12:36 PM
|cherbear, sounds like you are going through the same thing I did, have you ever heard of "Asperger Syndrome"? This is a high-functioning autistic disorder, and after a few mis diagnostic labels, a neuro psychologist finally pin pointed my son. I ordered a book titled A Parents Guide to Asperger Syndrome & High Functioning Autism by Sally Ozonoff,PhD, Geraldine Dawson, PhD & James McPartland. While reading the first chapter, I thought, OMG, someone has written a book about my kid. He was also "bullied" at school and I (we) went through hell. He is very high functioning and is always on the honor-roll. He does not "look" different so the other kids just think he is a freak. He is now a freshman in high school and is finally making friends and clicking. There is also all kinds of info on the web. Let me know & good luck, I know what a battle it is and he does have an IEP at school that allows for extra time during testing and he has 1 period per day in a room with a tutor just in case he needs help.|
Posted: 11/9/2006 7:21:51 PM
|Wow, love the business card idea. Reminds me of a time we were in a Blockbuster store, my son was 4 (now 14) he started throwing a fit so I picked him up, put him over my shoulder (like a sack of potatos) and went out the door. Sometimes its just better to remove youself and your child from the situation and a lot easier. Not saying this is true for all that have children on the spectrum umbrella but for us, it is better now that he is older. I also think that getting the correct diagnosis, learning about the disorder and teaching my son about it, also helped.|
Posted: 11/9/2006 7:35:31 PM
|My son is not severe, so I have not had the pleasure of a full blown meltdown in public. I am, however, a special-ed aide for an 11 y/o boy with Asperger's more severe than my son. He has had 3 meltdowns at school so far this season. And speaking from experience with him, trying to hug him is the WRONG thing to do, and could possibly get you hit, kicked or bitten. My heart goes out to each and every one of you, but we have to be strong and not look at spectrum as a disability but instead look at it as a gift. We can learn so much from these kids, they are truely amazing, and brilliant.|
Posted: 12/2/2006 5:15:43 PM
|Wow I was just looking through the single parent sites on pof when I saw this one, as my son has multiple disorders already diagnosed (ADHD, juvenile bipolar, and several others) as well as being checked for aspergers autism I decided to check it out. As terrible as it sounds its almost a relief to see we are not alone out there. He as been on a trend of medications as we try to figure out what works, tried the diet and did not work with him. For me the frustration is he has been intelligence tested several times and everything except writing and math test at a 93% level but because of his disorders he is underestimated by his teachers. We just moved to a small town to get away from the crowds of a larger one and give him breathing space but they are not prepared for him. Is there any advice for me or the teachers on him getting the best he can of his education? And any advice on how to deal with overly (verbal) helpful relatives? TY.|
Posted: 12/2/2006 7:50:57 PM
|Hello.. great thread full of tons of info. |
My grandson is 2 1/2... busy fella.. dont talk .. loves to play with his cars. I just wonder.. he does not care to have anyone read to him.. sends him in to a holy terror temper tantrum... there are other things, such as to many people in a small area... being over stimulated certian music and movies. These all trigger the anger mode. He will not play very well with others.. rather be in the corner with his cars. Loves to play outside. Time out works most of the time, just need to give some options and the mood mostly changes for the best.
My question is.... after seeing numerous doctors.. all of which say he has some thing different and wont agree some say autism, some say ADHA... one even ventured to say he was deaf.. NOT and the list goes on.... What does one do??... What do we settle on for an answer? We have him seeing a speach therapist ... not really making a difference but we hope in time it will.
One frustrated gramma
Posted: 2/6/2007 8:05:03 PM
|Hi there. Well, I just came across this thread and I think it's great. I'm a single Mom in Maple Ridge with a 10 year old daughter and a wonderful 11 year old boy who just last year was diagnosed with Asperger's and Autism Spectrum Disorder. Now the best thing about this forum is I don't have to answer, "What is that?", "Oh, Autism? Hmmm, sorry to hear that!" Heck no, there is no reason to be sorry. I explain to those who don't understand that my son doesn't have a disease or a 'problem', he just has a different way of seeing the world and reacting to it. He's very intelligent, funny, sensitive and curious. On the downside, his social skills when it comes to making and keeping friends, are very limited. He also has to deal with depression and moods and yes, he gets very frustrated. Well, all three of us do. I've learned that frustration is par for the course. |
I'm actually very relieved that my son has finally recieved this diagnosis, because now I can finally put a 'face' to his behaviour that has puzzled me all these years. The hardest part was watching my son struggle to make friends at school..watching him walk around the perimiter of the playground with his head down, hiding beneath his baseball cap, not interacting and looking so lost. I don't know how many times I've come to the school and seen him like that and cried because I couldn't help him. Now I know.. now he knows, but he's still learning to understand. We also just qualified for funding so that I can get my son the help that he needs, but I'm a bit scared to get things started.
I still feel so overwhelmed by it all, and try to keep my sense of humour, because heaven knows that's my lifeline!!! I have a wack of papers to read through and decisions to make about who will be best suited to help my son... all the while I'm trying to go to work, take my boy to councilling, help both of my kids with homework, find some quality time where I can give my daughter some attention as well and then somewhere in there I find myself.. I know it's just a matter of time before it gets better, but sometimes I don't know which end is up.
If anyone has any advice as to an occupational therapist or program that you could recommend I look into, I would be eternally grateful. I'm glad I decided to check back here today... Dating is actually one of the last things on my mind right now, but it would be great to meet someone to talk with, especially someone with an understanding of how special autistic kids can be.
Thanks for the ear and I'll be back to say hi again soon.
Posted: 2/9/2007 3:42:07 PM
|Hello again and thank you for all the advice. It does feel good to just be able to voice some of my concerns and questions to people who understand what I'm going through. I will definitely check out all those sites you recommended and get the ball rolling. It is a bit frightening, but I know it's so worth it. |
I also know the feeling you were talking about, almost wanting to cry when your child goes on a play date.. that was me yesterday. My son was invited to go over to a friends house and even was asked to stay the night.. I was so happy for him, I got all misty. He had a great day with his friend, but didn't quite make it through the sleepover.. I picked him up at about 10:30pm, but his friend and the parents were awesome. I was so happy.. it was a good day.
Oh, and about buying toys and such with the funding... I was told by my social worker that if it does my son good and it is recommened I could even buy a trampoline with the money. To help his coordination and such!! I thought that was a great idea. He's a pretty mobile kid, but not the most graceful. He's also quite tall for his age and his feet get in the way, so he says... I'll be looking into that to see if he would qualify!
I'll keep you posted and of course be back to read more great advice. Thanks again!!!!!
Posted: 3/5/2007 10:59:23 PM
Today he expressed that he really wants a bike. I have never had any success in teaching him to ride a bike.
Start him out with an adult tricycle (nothing at all like the "kiddie" trikes). This way he can learn the mechanics of riding with much less of the balance issue coming into play as well as the "rules of riding" in a way that you can easily accompany/supervise.
Once he has learned the safety and mechanics then you can have him practice in a controlled area with a bicycle to get the whole balance and more speed parts down.
I've used this with many autistic kids and, as long as they are functional enough to learn and remember to practice safe riding (and have the balance for it) they can usually transition to a bicycle.
Even if he can't make the transition to a bicycle, most kids I've known think the adult trikes are pretty cool in their own right.
|Thank you so much|
Posted: 3/14/2007 4:55:25 PM
|i have several clients with autistic children and they report fairly decent results with an herb called ginkgo. typically used with alzheimers sufferers, ginkgo helps to stabilize brain activity. it can also help with co-ordination problems, particularly balance. lecithin also seems to have a beneficial effect on the brain. it supplies choline and inositol, which help liver function as well. make sure the child gets enough calcium. it has a calming effect and low levels can definitely affect behavior. people tell me that free-form amino acids help with adhd as well as autism. these really improve concentration.|
absolutely avoid wheat, dairy and processed sugar. this will probably be the biggest challenge, particularly with children. but these interfere with proper nutrient absorption and cause their own problems.
yoga seems to help as well. i don't know a whole lot about yoga, but i have had people tell me that autistic children respond well to it.
also ~ very important ~ parents need to care for themselves as well. this condition stresses the entire family and everyone can benefit from additional b vitamins, calcium and extra vitamin c.
i hope this helps someone. the recommendations come from clients in the same position as many of you here.
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