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We are in the process of getting my 8 yr old son tested for Aspergers and Sensory Intergation disorder. He was tested for autism when he was 3 but the would not give us the dx. They said he was developmently delay (what a crock!!). He has been recieving therpy since he was 18 months old.He is in a special ed class at school and only recieves 30 mins of speech a week and 30 mins of OT a month. It's just not enough! He is really good with numbers but reading writing and answering questions are the hardest for him. He does not socialize with other children of his age. He just shies away. He doesnt undertand the concept of a stranger which just terrifies me. Here in Louisville there is the Weiskopp center to get your child tested they specialize in Autism. But it is so expensive even after insurance Im still going to have to pay 4000 are there any finanical asst programs out there that can help you get your child tested? I am so glad that I came across this post. He is such a sweet and loving little boy I just want the best for him. Any suggestions would be greatly appreciated
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SUGAR-JUNKY
1/6/08 11:22 P
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| Hi, I just signed up and finished my first week of choosing my food lists. I am not good with the computer and it took me forever! I am the proud mom of two children. My daughter is 2 and in the terrible 2 stage! My son is 9 and he has autism. He has been on a downslide for the last year and a half. I have been stress eating and put on forty pounds this year! I have never been overweight before (except after pregnancy of course!) I am so depressed! I am so glad I found this site and I am praying I can find the old me again! I look forward to meeting other moms like me.
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| someone please help my son is 2 almost 3 he has autism but not diagnosed yet ive had him on the gfcf diet for about 4 days now and just found out the syrup i was using is not gfcf can anyone tell me foods they know are gfcf that i can buy in regular stores not on the internet or expensive health stores money is an issue for me so i would like to buy whatever i can at a reg store than what else i need i will get that at the health or internet
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AMYBOLTON
10/4/07 10:45 P
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| Thank you so much for the links. Can't wait until I see if he will benefit from this diet.
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BJS_MOMMY
10/4/07 11:13 A
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Hi :)
Gluten is wheat protein, and casien is milk protein. So basically, no wheat or dairy. The hardest part is that wheat and dairy are in EVERYTHING!! I mean, literally, there is gluten in soap! So I have my son on all "California Baby" body wash, sunscreen, lotion, etc. to avoid transdermal exposure. We use all-natural Tom's of Maine toothpaste for him too. It seems extreme, but you have to realize that the gluten and casien CAN be absorbed through the skin or eaten, so that's a key part of the diet. Even playdough has gluten. So you just have to study up so you can avoid that stuff and find replacements. It takes maybe a month to really get your kid totally GFCF, and most people wean their kids off casien and gluten and slowly integrate the alternative stuff.
Your local health-food store is a great place to start. Also, try allergengrocer.com. And just "google" GFCF food. It's very widely available. Also, go on Amazon and order Lisa Lewis's two books (two volumes of one title) called "Special Diets for Special Kids." It has tons of great recipes and very good info for starting out.
I'm glad to email you those files, Amy. I got your sparkmail, and will be sending the files to your account :)
Please feel free to email or post with any questions. It's a little overwhelming to start, but it's SO worth it. If you commit to doing it for 3 months, you'll know if it works. You canNOT do it half-way or only do it short term if you really want to know if it works. Three months is the typical benchmark, but most people see improvements before then. :)
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AMYBOLTON
10/4/07 10:59 A
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AMYBOLTON
10/4/07 10:58 A
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| I have a question about this diet, how hard is it to incorporate this into your meal plans and where do you find foods without gluten? Just read about the food lists. Would you mind emailing them to me? Thank you so much.
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Welcome, Jaysangel!
My son has been on the diet since February, and it has made the single biggest difference in him of everything we've done to date. It doesn't work for all kids, but it sure did work for ours, and I am so grateful for that. Of the 10+ kids I know on the diet, only 1 didn't respond to it.
I have comprehensive food lists and that type of thing. If anyone wants copies emailed, please send me a message. I am happy to share :)
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| I'm pleased to come by a thread mentioning the GFCF diet. We're researching it for our son! He's getting a blood test on Monday to check for gluten sensitivity, but whatever the results, I want to try him on this diet. I've heard miracle stories!
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BJS_MOMMY
10/1/07 12:19 P
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Hi, Mango,
GFCF means gluten-free, casien-free, and a LOT of parents with kids on the spectrum do it. Typically, children who self-select narrow, carb- and dairy-heavy diets do so because they get a rush from those foods. When you take away those foods, the children benefit tremendously and show gains in all sorts of areas, particularly speech, socialization, and communication.
My son needs me at the moment, but I will try to post later with more info. In the meantime, please check out gfcfdiet.com. There's a lot of great info there! :)
Hope that helps!
P.S. This is what Jenny McCarthy was talking about on Oprah recently when she said she did a special diet for her son. We've been doing it for 8 months, and it is the single biggest factor in my son's progress.
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| Hello,My nephew only eats a few things its hard to get him to try anything.Can you tell me more about GFCF?
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BJS_MOMMY
10/1/07 10:15 A
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Hi, Mango,
Has your sister ever tried the GFCF diet for your nephew? Lots of kids on the spectrum respond really well to that. I know at least a dozen families personally who've had incredible success with it. :)
~Tara
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| Hi,I am so happy to know that you can relate with me.My sister has a 8 year old son with Aspergers. She lives in up state ny her sons school is very knowledgeable the principle has a child with Autism.He was very helpful to her.Do your children have food issue?My nephew will only eat a few things.Pizza, grilled cheese on potato bread,rasin bagels toasted with Walmart cream cheese and does know the difference. pbj, Hot dogs cut up, fruit, French fries,Thats everything.My sister Dr told her that she need to try to introduce differnt food to him.He puts up a big fuss.Shes got so much that she has to work with him on thats just one of many.Thank you.
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| Thank you! I do notice that SOME and I said SOME parents of Autism children say that a lot about Asperger children. That there not part of the spectrum.My sister is having a hard time with this And my sister in law they work very hard with all their corks and ways.
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http://www.childbrain.com/pddq3.shtml Here is another link that explains PDD. http://en.wikipedia.org/wiki/Pervasive_developmental_disorder this is the link for Wikipedia Encyclopedia.
http://www.ninds.nih.gov/disorders/pdd/pdd.htm This is another link that teaches about PDD.
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AMYBOLTON
10/1/07 12:28 A
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| If you visit the Wikipedia Encyclopedia and look up pervasive developmental disorder you will find there are 5 disorders listed. 1.) Autism, 2.) Rhetts Syndrome 3.) Childhood disintegrative disorder, (4) Asperger syndrome, and (5) Pervasive Developmental Disorder Not Otherwise Specified (or PDD-NOS).
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| Yes Asperger's is one of several Autism spectrum.It was named after Han Asperger 1944.PDD
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Hi all :)
Asperger's is actually not a form of PDD. There is so much terminology to autism that it is pretty confusing! Here is a basic run-down from Autism Speaks (autismspeaks.org):
Autism is a complex neurobiological disorder that typically lasts throughout a person's lifetime. It is part of a group of disorders known as autism spectrum disorders (ASD). Today, 1 in 150 individuals is diagnosed with autism, making it more common than pediatric cancer, diabetes, and AIDS combined. It occurs in all racial, ethnic, and social groups and is four times more likely to strike boys than girls. Autism impairs a person's ability to communicate and relate to others. It is also associated with rigid routines and repetitive behaviors, such as obsessively arranging objects or following very specific routines. Symptoms can range from very mild to quite severe.
Autism was first identified in 1943 by Dr. Leo Kanner of Johns Hopkins Hospital. At the same time, a German scientist, Dr. Hans Asperger, described a milder form of the disorder that is now known as Asperger Syndrome. These two disorders are listed in the DSM IV (Diagnostic and Statistical Manual of Mental Disorders) as two of the five developmental disorders that fall under the autism spectrum disorders. The others are Rett Syndrome, PDD NOS (Pervasive Developmental Disorder), and Childhood Disintegrative Disorder. All of these disorders are characterized by varying degrees of impairment in communication skills and social abilities, and also by repetitive behaviors. For more discussion on the range of diagnoses that comprise autism spectrum disorder, click here.
Autism spectrum disorders can usually be reliably diagnosed by age 3, although new research is pushing back the age of diagnosis to as early as 6 months. Parents are usually the first to notice unusual behaviors in their child or their child's failure to reach appropriate developmental milestones. Some parents describe a child that seemed different from birth, while others describe a child who was developing normally and then lost skills. Pediatricians may initially dismiss signs of autism, thinking a child will “catch up,” and may advise parents to “wait and see.” New research shows that when parents suspect something is wrong with their child, they are usually correct. If you have concerns about your child's development, don't wait: speak to your pediatrician about getting your child screened for autism.
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Hope that helps :)
~Tara
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| I have heard of aspergers. It is a form of PDD. I haven't really researched it as much as I have autism. I do know they are usually higher funtioning. That's kind of scary to know about the mercury. I have said all along, I believe my son's autism was caused from the shots. He was reaching normal milestones until he received his MMR shot at 12 months instead of at 15 to 18 months. His development in the area of speech and many of his motor skills changed, stopped and some of them regressed shortly after. I believe someone told me they have removed the mercury now but the disease is still climbing and more and more are being diagnosed.
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BUTTERFLYALICE
9/28/07 10:56 A
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Many believe the rise in Autism has to do with the mercury in vaccines. I have heard that the mercury gets stuck in the liver and sometimes doing a cleansing of the liver may help a bit. I'm not sure how to go about this but if you check online, you may be able to find more info.
BTW, using mercury in vaccines is illegal in Denmark. And if the vaccine is dropped on the floor at the drs office, the mercury content makes the spill qualify to be considered toxic waste.
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| My nephew has Asperger's Its a form of Autism.By husband sisters 3 kids have it too.Has anyone every herd of this.
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| I don't know what to say about the progress. I do know what you mean about the meds. My son was the same way. You put them on them to help with some conditions but at what cost. I took him off everything. He can learn it just takes repetition.
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LYSADESTKIRRA
9/27/07 11:13 A
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Hi. I have a 5 yr old stepson. He hasnt been diag. with anything specific. I knew when I met him that something just wasnt right. I started researching his symptoms, ( not talking, still in diapers, insocialable, sitting alone and rocking, playing with the wheels on the stroller for hours on end.) anyways, the reason I was concerned is because his mom has him on like 9 diff. meds 2x a day. He always looks stoned and has no intrest in anything.
I ( although i know I am not a professional ) We thought maybe he is Autistic. We recently had him for 6 weeks, I researched all his medications and we decided not to give him them while he was with us. He started playing, trying to talk, walking up stairs rather than crawling, and I taught him how to use a spoon. He only head 2 siezures in 6 weeks, his mom says at her house he has numerous a day.
I do not feel any diff. twards him than the other kids, he is a perfect angel in my eyes but, I am not sure how to help him to grow and learn. Everything I taught him, when he went back to his moms, he lost. any ideas???
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My son is 13, he was diagnosed as PDD/autistic. I have not had a lot of progress with him. He is still non-verbal and gets very frustrated. He has not taken to sign language. He is only at a 3rd grade math and reading level. I do know he is growing more and more frustrated. He has started kicking and throwing things since his grandfather died last December. He also aquired this really hateful expression like he's ticked off at the world. I will have to say he is very loving and tender hearted though. He has a sweetness that helps those around him just fall in love with him. Just concerned with how he is acting at home as it is becoming more and more regualr.
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RITZYPAWZ
9/17/07 12:42 P
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| I have a 15 yr old with Autism
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Hi, all~
Several people have asked me about DAN!. Here is their website: http://www.danconference.com/
~Tara
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DJohnson~
To be really honest, and I say this at the risk of sounding really blunt and rude because the internet allows no margin for tone of voice, if your kid has food allergies and stress, she IS suffering, and your docs are being lazy. I hope you see this post, because it really may help :)
A lot of kids with Autism have "leaky gut syndrome." As it is a syndrome, not a disease, it's not something you can do a simple blood test for. But it's rather a grouping of symptoms. If your child has autism and has digestive problems, you can pretty much bet the farm that she has leaky gut and will benefit from the GFCF diet protocol. If she has digestive issues AND self-selects a carb and milk-heavy diet, it would be stunning if the diet didn't help her.
IF this is not your autistic child (and frankly, even if it is based on your description), she may have something called Celiac disease in which the body cannot adequately handle gluten (wheat protein) which is found in everything from bread and cereal to toothpaste and play-dough. It's a naturally occurring protein that's used as a "binder". Just go on Google and search for "celiac." I think you'll find it interesting. And your pediatrician might blow you off when you mention any of this, but frankly, s/he doesn't live with your kid. Also, remember that a general pediatrician may not be familiar with every way that these disorders present themselves, so they will often miss or misdiagnose the issue.
So, long story ... longer...lol, I'd say if your child has autism, the diet is a really good fit for you. If not, I still think a kid with that kind of digestive distress likely has celiac or a milk allergy, so the diet is a total winner there too.
I would recommend reading "Unraveling The Mysteries of Autism and Pervasive Developmental Delay" by Karen Seroussi. It's a very worthwhile read, and it explains a lot of this stuff. I'd also check out gfcfdiet.com. It's a little hard to navigate in my opinion, but it has lots of great resources for the diet -- lists of what people can't eat, etc. -- and it's really helpful. Lisa Lewis has two cookbooks on Amazon that are called "Special Diets for Special Kids," and they are GREAT for the GFCF plan.
Hope that helps you!! :) Please feel free to post to my sparkpage if you ever want a faster reply from me. :)
~Tara
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DJOHNSON1189
9/15/07 8:30 P
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Hi Again. That's great news on the progress you are making with your son.
What is leaky gut sydrome? How is it diagnosed and what are some of it's symptoms? I am curious because my oldest daughter complaints of a lot of stomach problems..constipation, stomach aches and what not. She has quite a round belly, it could be just a pot belly, but sometimes I worry it's something more. The doctors don't take things too seriously because she's not really suffering. It's probably a combo of food allergies and stress.
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Hi, DONNAD-
Welcome to the group :) To answer your question about DAN!, I am pasting a post I made on another spark board. Hope it helps! Let me know if you want further info. :)
Hi, all :)
Soulchild ~ First, so sorry about the pink eye!
Here's the info you asked about: The DAN! protocol (Defeat Autism Now!) is a biomedical approach to treating autism. When you treat children by the DAN! approach, you also do ABA or VB or OT and PT or whatever other behavioral, occupational, or physical therapies your child might need. But DAN! treats the underlying physical conditions of autism. For me, this is just as essential as therapy, because I just do not believe that there is no physical basis for this disorder. It has to happen for some reason. Something is going on in these children's bodies to make them autistic.
The basic premise of the DAN! approach is that children on the spectrum have certain biomedical issues which contribute to their autistic behaviors. So the first thing is diet. Will is on a glute-, casien-, and soy-free diet. For a kid with texture issues on top of those restrictions, that means a VERY limited diet. But I will tell you that literally within two weeks of taking Will off of gluten, casien, and soy (that's wheat, dairy, and soy), he did a total turnaround. It was astounding. He started to come back from wherever he was retreating to in his head. It was amazing. And he has not gotten worse in any area since we changed his diet. And he's made slow, steady progress since.
The premise of the diet is simple: Children with underlying, genetically predisposed digestive problems (typically with a family history of digestive issues), are born and are probably neurotypical (NT). At some point, the body receives some kind of assault, be it from a toxin, a vaccine, a virus, or some other issue (and that's a whooole other post, so tell me if you want to know more about that). The "gut" becomes permeated as a result, and the child develops what's called "leaky gut syndrome." With this issue, the child has problems processing certain foods. So when the wheat, dairy, and/or soy proteins get into the digestive track, they are broken down to a certain point and then leak out into the bloodstream in a form that does not belong there. When these little forms of the foods, called peptides, get into the bloodstream, they travel all over the body, including to the brain. At the brain, they attach to the opiate receptors, which are the receptors of the brain that are stimulated by opiates. That means that our kids are essentially getting high off of vanilla wafers and milk. The prolonged state of stimulation to these areas of the brain cause abnormal brain development AND result in autistic behaviors.
It was incredible when we took Will off these foods, how fast he changed. He started to seem like his old self, personality-wise. Of course, he still has problems, and he still has autism. He needs serious therapy, and he has a long way to go. But Will actually has a very good chance at recovery because we caught this so early (just under 2), and we started treating him. Will's also on some dietary/vitamin supplements, which also make a big difference.
The next step for us is chelation therapy, which is a type of therapy which removes heavy metals from the body. An extremely high percentage of kids on the spectrum have heavy metal toxicity. They, for whatever reason, do not process metals properly, so they build up in their little bodies, and cause all sorts of digestive problems and neurodevelopmental problems.
Anyway, that's a LOT of info for one post. If you're interested in learning more, please let me know. I will tell you anything I know, and I'll be glad to share web resources and book recommendations, etc. :)
Autism is such an enigma; the more we can learn from one another the better! Who knows when we might meet the person whose approach really helps our kid?! :)
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| Hi! My son was diagnosed in July ( tho we thought he had aspergers before that but just trying to get into a doctor around my area what the chore). I just read all these posts to catch up. Nice to meet everyone. One question......what is DAN? Never heard of it but very interested.
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DJohnson,
I think anything we as parents do to better ourselves will ultimately benefit our children. Living a healthier lifestyle just sets a great example for our kids, and that is essential. How can we expect them to be anything but couch potatoes if that's what we are? I never want to be one of those "Do as I say, not as I do" parents. So I feel that it's important for me to lose this weight so I can set a good example AND so that I can really be active and have fun with my kids :)
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DJOHNSON1189
9/10/07 10:04 P
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| Good luck with the therapy. It can be such struggle finding the right balance for ourselves and our children. Do you think this spark people program will help you with the difficulties of rearing children and their nutrtional health?
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| P.S. Anyone else using the DAN! approach for treating their children?
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| Mercury toxicity is extremely common among children on the spectrum. In fact, DAN! doctors will recommend that any child on the spectrum be heavy-metal tested. In general, ASD kids have an impaired ability to process and excrete heavy metals, so chelation therapy helps remove those elements for the child. When a child is metal-toxic, chelation can make a world of difference. We will be doing it for my son as soon as we get some other digestive issues under control, as it's important to do that first.
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DJOHNSON1189
9/7/07 9:59 P
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| I don't know if this will help but someone was telling me about a show with a dr Hoffman. He has found a possible cure for children with autism. I haven't checked out the info but thought people might be interested in looking into it. The main theory is that children without autism have mecury found in their hair follicle. Children with autism have no mecury in their hair follicle. The importance of this means that the children with autism are not able to detoxify their bodies normally. Apparently once he works on detoxifying them, they become much better. It sound worth a shot at the very least. Has anyone else heard of this doctor? Does anyone know of the legitness of this idea and treatment?
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CHUNKAMUNKA
9/6/07 1:34 A
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Something to think about... :)
http://en.wikipedia.org/wiki/Neurotypical
"Neurotypical" (or "NT") is a neologism used to describe people whose neurological development and state are consistent with what most people would perceive as normal in their ability to process linguistic information and social cues.
[1] While originally coined among the autistic community as a label for non-autistic persons,[2] the concept was later adopted by both the neurodiversity movement and the scientific community.[3][4][5]
In the United Kingdom, the National Autistic Society recommends the use of the term in its advice to journalists.[6]
The term is sometimes used sarcastically, as in Autistics.Org's tongue-in-cheek "Institute for the Study of the Neurologically Typical."[7]
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CHUNKAMUNKA
9/6/07 1:34 A
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Something to think about... :)
http://en.wikipedia.org/wiki/Neurotypical
"Neurotypical" (or "NT") is a neologism used to describe people whose neurological development and state are consistent with what most people would perceive as normal in their ability to process linguistic information and social cues.
[1] While originally coined among the autistic community as a label for non-autistic persons,[2] the concept was later adopted by both the neurodiversity movement and the scientific community.[3][4][5]
In the United Kingdom, the National Autistic Society recommends the use of the term in its advice to journalists.[6]
The term is sometimes used sarcastically, as in Autistics.Org's tongue-in-cheek "Institute for the Study of the Neurologically Typical."[7]
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CHUNKAMUNKA
9/6/07 1:29 A
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Something to think about... :)
http://en.wikipedia.org/wiki/Neurotypical
"Neurotypical" (or "NT") is a neologism used to describe people whose neurological development and state are consistent with what most people would perceive as normal in their ability to process linguistic information and social cues.
[1] While originally coined among the autistic community as a label for non-autistic persons,[2] the concept was later adopted by both the neurodiversity movement and the scientific community.[3][4][5]
In the United Kingdom, the National Autistic Society recommends the use of the term in its advice to journalists.[6]
The term is sometimes used sarcastically, as in Autistics.Org's tongue-in-cheek "Institute for the Study of the Neurologically Typical."[7]
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I am sorry if I offended anyone - I didn't mean to at all! I entered the topic area to support everyone here and tell you all that I think you're great! It seems that, from my experience, no matter how I address a family with differently abled child (special needs, exceptional needs, disabled, I could go on...) it comes out wrong. I have most offended parents when I refer to their children by their labels - technical names, if you will. I meant nothing by using that comment, I tried to use the quotes to soften it.
As for the violence and aggression - yes, it was their way of communicating. I definitely agree with that! If I prevented them from doing something, I was the target of the aggression. I tried to help them find other, better, more effective ways to communicate. That's where the teaching came in.
I welcome your feed back and hope I have explained myself better.
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I'm not particularly offended by the terms used, but I've never heard the term 'neuro-typical'...I suppose everyplace in the world has their own terminology...I refer to my daughter as 'normal' occasionally, but that doesn't mean I consider my son 'abnormal'(although in reality...he is) I just think that as long as someone is not calling my son retarded I'm pretty much fine with whatever......it's all just terminology! I hope noone remains offended or hurt cause no matter what we call it...it kinda sucks, right?
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Hi,
I don't mean any disrespect, but your label for your child indirectly implies our children are "irregular."
I am really bothered by the fact that somone with certification in special ed wouldn't be trained in properly respectful terminology referring to someone with a special ability. For all the hours of education you have logged I find it sad that you don't know the appropriate terms that your child may be considered neurotypical and our children have neurological challenges or "neuro-atypical." Instead of a label it sounds like an insult.
Also, I find it very hard to believe that someone with the mentality of a 6 month old to a one year old could have the ability to be violent and aggressive. I don't think this is possible scientifically. Though these kids are non-verbal and severely affected neurologically, they may me trying to communicate the only way they can at that time.
I have 5 kids...and I love them all the same and they are all different.
I may be wrong, but I think a lot of parents would be offended by your comment.
I am not trying to offend you. I just really had to say what was on my mind...
By the way, I am neuro-atypical as well.
Thank you for reading my message.
I wish all the best to you, and pray this new knowledge will only strengthen you and not in any way offend you.
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Hi...I have a 12-year-old boy with autism. I guess I'm lucky to live in MI cause he goes to a special school for physically and mentally handicapped kids up to age 26...they have specialized teachers/PT/OT/speech and also a pool which Dylan LOVES! Dylan used to have a lot of meltdowns, but they have just kind of slowed down with age...once in a while he'll cry easily and just need to be alone. He has some language, but its at about a 3 year old level..he's also learned to sight read over 250 words so he does enjoy reading books...
I just read my post back and I guess I should add that when Dylan was about 5 or 6 he was absolutely horrible and we had to look into meds for him. He was unable to sit down for even a few minutes to learn anything...he was screaming a lot, banging his head when frustrated and just generally uncontrollable. He's now on Strattera in the day and Seroquel at night, but we had to be on a waiting list for months to see a certain doctor for these(the County mental health psychiatrist who accepted Medicaid)...
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Thanks! It is really hard for parents to find the right help and navigate the different systems.
We live in Illinois. Our school system is really bad for special ed. We have tried to work with the system but they absolutely won't work with the parents. They won't believe parents, Drs. diagnoses, etc. My 13 year old goes through so much because the teachers think he is willful. He isn't, he has Asperger, NVLD and sensory deficit.
The school system would be Jenna's next step. I won't put her in it as they have no clue as to what to do with sensory. They aren't trained in sensory or Asperger or NVLD (NLD.) They aren't trained in social skills either as they really have none!!!
It took me 6 months to get my son back after he was in the Early Intervention Preschool for 3 weeks!!
He became aggressive and withdrawn. And when he was having staring spells frequently, they denied it ever happened adamantly. When I had proof that he was having them frequently around the clock from the neurologist due to seizures the Director siad it was probably just a misunderstanding!!!
The OT in the school is the worst. I know a good OT when I see one, and he was awful and unfortunately he services the whole district. He was the worst of the team.
We have a wonderful OT for our daughter now and wish we could keep her!!
The OT for our son sees him for an hour 2X a week. She is really good for him.
You are right that the OT is so vital for sensory issues.
Our daughters PT really helps her with her physical challenges. She will need AFO's (Ankle Foot Orthotics) because her toe walking is causing her to shorten her tendons. It would becoem permanent if we didn't intervene with the AFO's.
It sounds like you have really been able to help your daughter with your diligence, knowledge and love and care for her.
I am so sorry that your husband has to be away. I can imagine it would be hard on your daughter and on you. A picture book of him and of your daughter with him might help. You could pull it out and say daddy is thinking about you right now and smiling, or something like that.
I assume your husband is in the service...which branch?
My husband was in the Navy many years ago. He deployed out of San Diego.
Where exactly are you located?
See ya, Cathy
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I am a parent of a "regular" child, but am a certified special education teacher. I worked with extremely affected kids. kids who were non-verbal, aggressive, violently responsive and very distant. But I found quailities in those kids that I could never replace. When they did connect - usually to an activity presented - it was amazing to see their minds at work. They weren't savants, they were functioning at about 6 months to a year, but the wonder. It was such a neat experience. I was so greatful to be a part of it. Power to all of you as parents of kids with autism!!! Stick up for your kid's rights because NO ONE knows them better than you do! Make the laws work for them! (I am willing to help with advocacy with the info I know - mostly in WI. If it could be of any help.)
~Al
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RODNEYSBRAT
4/20/07 4:03 P
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Hi cathy,
Nice to meet you too. thank you I really try to help other families because its really hard to find out everything that is out there for the parents and kids.I am just starting to get my BCBA (behavioral consultant)so I can help more families. I think its really important to be involved in everything when you have a child with autism or any other disability. my daughter had a MRI and EEG they both came back normal.
If you dont mind me asking what state you live in? there should be other services out there for your daughter once she ages out of your current program.
i found OT to be very important especially for sensory, my daughter sensory is very severe and she use to need input all the time. but since we have been working on her sensory her needing input is less and less. (even though this month has been bad cause my husband just deployed but she is getting better).
talk to you soon.
farrah
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Hi,
I am a mom of 5, 2 of my boys have asperger and my daughter (almost 3) has severe sensory issues.
I totally believe in the sign language thing! It helped my daughter so much. She went from not speaking at all to now using phrases and some sentences. She still has processing delays, but she is really progressing. The Speech Therapist and OT have been really helpful. But we will lose them beginning of June when she ages out of the program...bummer.
The OT has been very helpful in the sensory areas. My daughter also head bangs, but she does it for input and sometimes sings or talks while doing it. She has a bald spot on top of her head and an abrasion along with flattening out the top of her head. She went for an MRI which was normal and a portable EEG which we haven't received results yet. (Our 5 year old with AS also has a seizure disorder.)
Hopefully it will come back normal.
Sounds like you do alot for your daughter and autism parents and children alike.
Thanks for that!
Well, it is nice to meet you, we'll talk again.
Best, Cathy
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Hi Heidi,
You have such a great attitude and I agree completely. Also I totally agree about no two autistic kids, let alone NT kids!
I wouldn't want to change my kids at all...they are who they are, challenges and all.
I am also a proud mom of 5 kids, 2 with Aspergers, one with severe sensory.
Best to you and your family, Cathy
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RODNEYSBRAT
4/20/07 11:16 A
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hello everyone,
I have a 8yrs old daughter and she has severe autism. I am also a nurse and I am a CA rep for unlocking autism. my daughter has meltdowns but we are able to control them alot better now. she is also very social. she had a hard time with communication at first due to her speech is limited but after introducing sign language to her, her speech has doubled and she is able to communicate her needs to us. its awesome. I also found that getting her to a OT to help with her sensory issues which she has alot, it has decreased her meltdowns among other things head banging etc.. I help her teacher with writing all of her goals. I also use alot of lavender stuff to keep her calm and it really has worked especially for sleep. just like to meet other parents.
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REVERENDHEIDI
4/14/07 11:20 P
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| Hello! Our son is high functioning ;o) What works best for him is humor. When he is having a meltdown I try to take his mind off of it by being silly, joking with him, acting like him or even just find something else entirely. Well, Chance is verbal, so I can't help you with the speech - sorry. Right, once Chance was able to read well, it seemed to relieve a lot of his frustrations in many situations. Never let anyone with a degree or license tell you they know more about Connor than you do. You live with him and have a special bond. No 2 autistic Children are alike in all aspects, so no one could ever be as sure as your gut feeling. Ask me anything, ~Heidi, Proud Mother of 4 (the youngest who is awesomely autistic)
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HI TASHA77,
I have a 5 1/2 year old and 13 year old with Asperger's. My oldest is 18 and seems mostly neurotypical. My 2 1/2 year old daughter has severe sensory and seems to be on the spectrum. Fortunately my youngest, Kelsa (1 1/2) seems NT as well.
Asperger is so misunderstood and my kids suffer for that. The OT has been so helpful for my 5 year old, Josiah. My 13 year old wasn't diagnosed until he was 12 and we have our hands full with him. He is very bright, very sweet, but lack of early intervention and the fact that he "appears" okay really works against him. The teen years are hard enough...but an Asperger teen is at times unbearable.
Nice to meet you and hope to talk again.
Best to you and your family, Cathy
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WHATAKIDDER
4/4/07 4:21 P
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| Mom of a 12 year old with Autism...also a special needs ABA tutor for young children with ASD for 8 years.
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SKINNYNANNY
3/20/07 2:52 P
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you will need to have a psychiatrist run some test, also perhaps a neurologist depending on what the tests reveal. The school system should have school psychologists and you may go to them with your concerns. If they are affected at all academically and the teachers will give information going back as far as you can, then you can request testing. Have you spoken to your pediatrician about your concerns? They may have some names to give you. Unfortunately, we often assume that parents know what to do, and are surprised to find out that they dont.
I would be curious to know what your progress is. It is never too late to start!
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| skinnynanny- thanks for replying. They have problems interacting with others and do not make any effort to socialize with kids. They have struggled in school for quite sometime now. It has never been easy for them. How do they test for it?? I am going to check on the things you suggested. Thanks again.
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SKINNYNANNY
3/20/07 2:06 P
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Jpearce
I don't know where you live, or what the special education system is like. I would ask if the teachers have seen any similiar actions and if has gotten in the way of their academics or social skills. Do they have problems interacting with others? Do they have appropriate socialization skills? Will your insurance co. pay to have your boys tested? or will your school offer testing to address your concerns?
That is just a few things I would address to start.
Good Luck?
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| I was reading the other comments. I have twin boys who have not been dx but there has been question since they were 2-3 yrs old. When they get nervous or excited they rub their hands together. They are not even aware that they do it. They are extremely sensitive to bright light and loud noises. They hate being around people they don't know. School in the beginning was very hard. They would not talk. There are 10 now and improving. I do see them rocking now from time to time. If anyone has thoughts or suggestions I would be interested.
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PRIMA_DONNA
3/20/07 10:52 A
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Hi, I'm the grandmother of two autistic grandsons; and I'm trying to help my daughter find something called The Listening Program for her son.
She has priced it, brand new, and the cost is $600; and she's hoping that someone here might know where we can get it for less. She's a SAHM of 4 children, in a one-income family; and this is really steep. She hasn't had any luck with the local assistance programs, so we're just hoping someone can give us some good advice. Also, has anyone here had any experience with it; and if so, what did you think?
Thanks for any help.
Donna
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SKINNYNANNY
3/10/07 3:28 P
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I do not have a child that has been diagnosed Aspergers, but my 21 year old son is in the spectrum. only diagnosed ADD, and PDD, but lots has been discovered since he was a child. I've worked for 10 years in Special Education in Texas, I particularly feel drawn to autistic children and their needs. I provide respite care to families that need a break in dealing with their autistic child. Feel free to email with with any questions. I would be glad to share what I know Remember each child is different and has their own unique dispositions and challenges. You are your childs best advocate. Good Luck
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| I just posted on the Aspergers thread also, but I have a 7yr old ds on the spectrum, Jake - glad to see there are others on spark
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PROUDMOM2CONNOR
2/26/07 11:59 P
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it would be great to see that cheat sheet! if you have the time to find it, i'd love to see what it says.
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SELAHDREAM
2/26/07 8:11 P
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| I have twin boys with autism. I found that a weighted blanket helped as well as a "calming place." I give them permission to go to a certain soft and comfy chair (they are 12 now) and have their meltdown. They know they can go there and melt down until they calm down. It has gotten easier every year for them to calm down. It was harder when they were younger and not able to use as many words. I think adding PECS to your daughter's IEP is a great idea. We used PECS, and sign language from the time they were two. Now they are talking but it's hard to understand them. I need to use social stories more but it's hard to find the time! They are actually doing very well now and their meltdowns mostly consist of stubborn opposition. They do take medications. Feel free to e-mail me! I work with children with disabilities at my cottage school (http://libertyscholars.com)
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My daughter was diagnosed with autism almost 3 years ago and she also becomes aggessive (only to herself) when she can't communicate what she needs. We have done well with using music or a sing song voice to calm her down. She learned to talk using the PECs cards and can now say most things that she needs. Baby Einstein and Baby Bumblebee movies helped with her vocabulary, as did flashcards.
When she was younger and needed to calm down we would lay a blanket on the floor, lay her down on it, and have one person pick up each end and swing her that way. Now she has a swing in our family room so she can calm herself down (or just play) when she needs to. Try to work with the school to determine his "sensory diet" They should have some resources and equpiment to try and help you find what works. Currently my daughter does swinging, rubs lotion on her feet (but not hands), and plays with shaving cream (rubs it around on the table, great for getting pen and marker off the tabletop as well). If you'd like I can find the "sensory cheat sheet" her teacher sent home last year. It lists behaviors that are common in autistic children and matches it to the sensory input they are craving and gives a more acceptable way to give them what they need.
As far as the potty training part...she did that on her own when she was 5 (about 3 weeks before starting Kindergarten)!
It's a lot of work but there are so many resources out there to help!
She's now almost 7 and has made so much progress!
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Hi all,
I am Mom to 5 and my youngest is 5 and on the Spectrum. I also would love to have her potty trained!!! Tantrums are better since she started talking but not gone!! anyway just wanted to say hi and look for some Moms who know what I go trhu each day:)
~Jenny
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Yup, right here, and it's a battle to get through the day sometimes. He's pretty manageable right now but I worry when he gets older, what will we do when we cannot physically control him anymore.
He loves school, they have a really excellent school for him here and it's amazing the changes in him since he started... he'll be 5 in a few months and so we're still waiting for him to talk or potty train! Either or both would be fabulous.
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Sorry, I'm rereading what I just wrote and thinking I wasn't very clear on what I was saying. All the things I had listed there were things was had tried as ways to calm him when we could see he was getting close to a tantrum, when he would get aggressive. Oftentimes these things can help them find away to calm themselves down before they have a melt down, or at least ways that we can help them.
I know it can be so frustrating at times, but your son sounds very lucky to have parents who care enough about him to do whatever they can for him.
Again, good luck. 
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Hello Proudmom2connor.
I can't say that I am a parent of a child with autism, but hopefully I can at least put out some suggestions of thing you can try or look into. I was a single mom with my first son and worked full time to support him. It just so happens that my job was the lead staff at a group home for children with autism. Our young man was very aggressive so we try many things to help him. That's were I'm coming from. I can say that the best ideas that seemed to work for him was compression thearpy. A tight hug or even a specially weighted blanket if he doesn't like to be touched. This seems to help them get some control and comfort for themselves. There was also brushing therapy that we tried, but our guy didn't like to be touched so it just made him cry. I tried it on myself though and found it very calming and relaxing. It's a simple small hand brush that you can probably talk to his therapist about trying. There was also joint compression therapy. We didn't do to much of that with our guy, but I do remember talking about it.
I hope some of these idea can help. The more informed you are the better you can help you son lead as normal a life as possible. There are so many wonderful resources out there now. Good Luck to you and your son.
Estel
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there is a group on here with kids on the spectrum. I think if you do a search on autism or aspergers you can find it.
Donna
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PROUDMOM2CONNOR
2/22/07 9:56 A
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Anybody else here have a child on the autism spectrum? My son's dx is still fairly new. We just found out he was autistic on February 5. I'm wondering if anybody has any tips or tricks for dealing with the aggressive behaviors? He isn't aggressive for the most part, only when he's throwing a tantrum. Then, he bangs his head, and hits and kicks if you get too close to him. He has these big blow out tantrums just about every other day.
Also, what kind of speech therapy do you use/recommend? Connor is partially verbal. He has words, but he rarely uses them to communicate. Mostly he will name things he sees. We just had PECS added to his IEP. A part of me thinks if we can get him to communicate with his words, he wouldn't get so frustrated with things and wouldn't throw as many tantrums.
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