Why don't people understand

Lara - posted on 05/10/2011

Hi Emily. Just new to this site and have just been reading your post and all its replies. I know, as do so many others, obviously how you feel. I have a 10 yr old with ASD, ODD and ADHD. A beautiful little boy who brings much joy and laughter into our house and also lots of anger, frustration and tears. Im in Melbourne too and have found Autism Victoria to be really help ful, alos our paediatrician, Chitra Chandran and pychologist Richard Eisenmajer. If you have any questions then drop me an email and I'll see if I can help and likewise. Always good to have someone near that has the same access to services as each other.
We have just started accessing respite services to from the local council so my husband and I now get time to talk and be a couple for a few hours a week. bliss!
Lara

Stefanie - posted on 05/09/2011

would they read info or do they not see his behaviors .it hard when family dosnt get it .it was obvious with me i had family member cwho thought i was mr an thatr drove my mom nuts she say no she has ld an autism .i dont get it

Louise - posted on 01/24/2010

hi emily

i work with children with autism and other special needs..i also have a son with autism and downs personally i find that most meltdowns have a trigger.. Have you noticed any pattern to your sons meltdowns if so try to take him away from any situation that is causeing them. Soacial training can help but it is whether your son feels ready to do this sort of things as you will be making more work for yourselves.. Are there any clubs he could be included in near to where you live or have you tried cubs or scouts. As long as he is eataing a balanced diet i cant see why you should change anything

hope this helps a little

louise

Christine - posted on 01/23/2010

My son is almost 23 with Autism and has been taking Risperdal (as well as other meds) for a while now. It seems to do pretty good. Meltdowns are few and don't last long.

Laura - posted on 01/21/2010

When my son had a melt down when he was younger, I found time out to be the best option. When he could choose to control himself, he could continue with an acceptable option. At home I had him sit on the couch. When we were out. I would have him find a seat, spot on the ground, and we would wait for him to control himself. He likes choices. The option of being able to get out of time out with good behavior helped him feel partially in control. I find choices work well for him. Sometimes I have to limit his choices. One of his choices at times when he does not want to cooperate is to loose his access to electronics. This usually curtails the problem. There are times when the electronics option has to be used. It is important to follow through with him losing the privilege. Proof of good behavior can shorten the lose of privilege. Throughout this all I help him to realize that I love him and want the best for him. When I do nice things for him, I reinforce that I do it because I love him. Not necessarily because he earned it.

Barbara - posted on 01/21/2010

Our daughter is in the hospital for behaviors out of control she is also on meds. we tried diet change we eat organic and it seems to help I am taking my daughter off of dairy they say dairy really makes a child with autism out of control. She was coming home tomorrow but she had a very bad fit writing on the walls hitting children and spitting we have been dealing with these behaviors for 9 yrs. things always get better keep hoping and have faith knowing that God gives special moms and dads special kids.

Debra - posted on 01/21/2010

I know exactly how you feel. nobody can understand unless they have been there. My son is 7 and has been having meltdowns since he was 2. We have only just got him diagnosed. It can be tough. just remember how tough it must be for them locked away in their own world unable to find away out.My son has autism ,sometimes i hate the word being spoken it gets so hard, but you carry on just as mums do. just try to get as much help as you cas the N.A.S are really helpful , but make sure you and yur husband make time for each other if thats possible as you are your childs world and he needs you both to be strong and together. with time other members of the family will come together . BE STRONG

Emily - posted on 01/20/2010

Update on Edward!!

My paed has decided to be a total Poo! As we havent made an app to see him , he will not write script and has told us that we are not doing anything to help Ed and that we are happy to just pop him a pill! i had to laugh at this statement as he was the one that told us that they would help and that is what he needed. I have always been very sus on meds and did this under his instruction.
i though as a health care provider it was up to him to point us in the right direction on groups and information on AS , as we were very new to it.
It has now been nearly 1 week without his Ritalin LA and I have looked into natural remedies. Ed is now taking "Be Calm" which I got from the Chemist and they seem to take the edge off. He will also be starting reliv Now for kids. Hopefully we will have results and I can let you know how we go
Emily

Morgan - posted on 01/20/2010

Thanks for the post Tammi. I agree with you 100% in how your controlling and managing your sons meltdowns. My son is 2 and even though he is going through his terrible 2's with tantrums and meltdowns I am STRICT....I don't think if it was for me being so strict, it would be alot worse. I haven't tried the get up and go for a walk or run but it sounds quite interesting, and how I think it's a great idea!! Your doing a great job and again I would like to thank you for the post :)

Kylie - posted on 01/18/2010

ok i know that feeling my four year old son has recently been diagnosed with aspergers and his father and grandmother (his fathers mother) dont believe anything is wrong with him and cant handle his meltdowns they bring him home and i have to deal with it ok diet change may help may not social training is hard it might work for you it might not my son wont mingle with other people if thers more then two in the group he is very relencunt to join in but hopefully kindy will help with that just hang in there i know its a long hard road but its well worth it maybe try and find some aspergers support groups for you and your son to join just be there fopr him i found when my son has meltdowns the best thing to do is leave him alone untill he calms down provided he cant hurt himself too much

Heather - posted on 01/15/2010

I have a son with severe autism who is nonverbal. And I have family members who love to tell me what I'm doing wrong with him and my standard answer to them anymore is "Would you like to come live with him for awhile and see if you still say that?" I have tried ABA, OT, speech therapy, and meds. He is 10 and still has meltdowns. Sometimes I can figure out what set him off and fix it and sometimes I can't. The only thing I can do is ride it out. If he has a meltdown in the store, I just ignore other people til he calms down and then just say "He has autism." If someone makes a nasty comment, then I usually respond with "Well, he has autism and really acute sense of smell and I believe it was YOUR perfume (colone, deodarant, etc) that hurt his nose and made him have a meltdown. Could you please move away before he does it again?" I, too, have found exercise a great way to prevent/stop a meltdown. If I see him getting upset, then I start a chasing game through the house or we go for a walk or I bring in my 100 pound puppy (yes, he's still a puppy) and let my pup and my son play. Oh, I also found that animals have a calming effect on my son. My pup can calm him down and is big enough my son can't hurt him easily (I don't allow my son to hurt animals and I am always right there to intervene). Infact, our cat, very special cat, is my son's best friend. Our cat will lay under the blanket with my son for hours while my son just hugs and hugs him. It's hard and it's heartbreaking for a parent to see their child out of control but you have to keep control of your emotions...because if you get upset or angry, your kid knows it and their emotions seem to follow how you feel. Just a thought.

Nancy - posted on 01/15/2010

Hi my name is nancy i have a 12 year old with autism he is doing wonderful but i went thru the same thing with his meltdowns,he use to break things abuse himself the doctiors put him on clondine and he does not have them no more also try to redirect when they are having meltdowns you know something they love i know its hard but you will make it and there will be better days ahead please never give up

Isabel - posted on 01/13/2010

Hello emily...i am a mother of a seven years old girl which is kind of a high functional and asperger .....i known it is frustrating when u child start having meltdowns and u don't how to react to his new "feature"(that's how i call it) n in top of that people start staring at u n making comment about ur child behavior but let me tell u someting IGNORE THEM most of this people don't even have a clue what is going on with ur kid...i am so sorry to say this but these people are ignorants who don't event understand and when u trying to explain ur child have a disability they will look at ur child like he is some kind of a mouster...i am very selective who will i esplain her situatio..some members of my family know but they have to prove it they are worth to share this.....i am a singl mom and another kid with othe disability and i have learn not to py attention to people...about ur question well check if weather is and issue may be when u take him out is to hot my girl don't go out until the sun goes down because the light hurt her eyes..check if some smell are the issue..my daughter has sensory integretion and have some occupational therapy that specialize with these kids. this has been a life change ..she is behaving better but still have some meltdowns here and there...take care of yourself...

Sally - posted on 01/13/2010

I know how you fell, i'm doing it alone . I get coments like, you dont disaplend him ,he is a brat. its your falt he is that way,. to the point you just want to scream!!! BUT I'm here to tell you there is help.thrugh meds, and counseling there are some counselors that work with children that have asperger,s./ autism/pdd. good luck . you should be able to find one in your area.

Lisa - posted on 01/13/2010

You said that he started to have meltdown recently? Do you have an ABA specialist at the school or in the area? You could maybe find out what is setting him off and figure out a behavoir plan to redirect him so that it can get under a little more control for you. Is there any area agencies that might have respite care available? We have family support in our area and they help anyone that needs respite. Even with children that do not have disabilities.

Erin - posted on 01/12/2010

Please do not worry, you are not alone. My family somewhat understand, but they do not live with this every single day. But, I have seen a dramatic change in my 4 year old son in only 4 months with sticking with the gluten-free diet. There is so much more out there now that this is helping more children. Also, boost up anything you can with the omega-3 foods, that has also helped him. Good luck. And never give up hope for your son.

Emily - posted on 01/12/2010

Thanks gwen, it is nice to know that there are other people out there with the same problem ( that being the lack of family support not the aspie) LOL.
I think for the greater part of things I have been in denial about Ed and I am just starting to deal with the fact that he is different. I hope one day I will be loud and proud about what he has to deal with and in the mean time....bugger everyone that doesnt understand!
Em

Jacinthe - posted on 01/11/2010

I understand what you are living. My son is 9 years old and he's an autistic child, we also think he has a ADHD. He has no medication yet and no special diet, but had a social trainning for 2 years and still have it and it helps a lot! Every child is different so try many things and keeps the one's who works with your son! Good luck! ;o)

Emma - posted on 01/10/2010

Hi Emily,

www.autismvictoria.org.au They are really helful. Contact number is on the website. If you call them and ask them to email you a list of psychologists that deal with children with Aspergers. They also have people you can talk to. Some organisations have great programs depending on where you live. Go to the autismvic website they have an event calander click on that and then Vic and list's all the events in Melbourne. I know that there are a lot of places that run social group skills. Espcially on School Holiday.

Also, your Ped should be able to help with ref's. Another great place we go is called Spectrum Speech. http://spectrumspeech.com.au/contact/, They are in Ashwood and Moonee Ponds. Not sure where in Melbourne you are in but I travel from Bayside to go to Ashwood. Hope this helps!

Glenda - posted on 01/10/2010

PATIENCE, PERSISTANCE AND PERCERVERENCE!!!! You can never give up. Yes, social training may help, intense social training. I am a mother of a 6 yr old girl diagnosed with autism with sever behaivors. We do A LOT of social training but she also does OT to help with her sensory issues. Could there be sensory issues triggering the meltdowns??? Which could be caused from gluten or casien. It is extreamly difficult to stick to so if you try good luck. Temple Grandin has lots of great info research it. All I can say is never give up.

Kimberly - posted on 01/10/2010

let me just say I knw what you r going through. My son is now 13 and we started going through what you are dealing with right now when my son was 4. February will be a year that my son looked at me and told me mom I love you but I can't take this any more, I turned around and he had my butcher knife up to his throat. I had no choice but to have him commited and Thank God I did, I finly got the right diagnosis My son is ADHD/ Bipolar/ Aspergers. He sees a counsulary every wek and now he is on the right meds we have had no out bursts of any kind and yes he still gets upset but not as bad. My son was just like yours and now he has went back to school after being homeshooled for so long. If you would like more information please feel free to email me any one of you parents but this web site can really help to www.nami.com

Shelly - posted on 01/10/2010

I know how you feel, my son was having several meltdowns a day and i just did not know what to do, i had and still don't have any help from any family member including my husband. I found alot of soicial interaction was really good for my son and it showed him how to control himself better especially if he is socializing with people who are open to the fact that he has issues and are willing to overlook it, those people are hard to find but they are out there and youll be surprised just who they are.

Angela - posted on 01/10/2010

Hi Emily,i am from Victoria, Australia. I have a son who is almost 13yrs, he has Aspergers. He too has meltdowns. He dosn't do emotion well, he learns things so how do you teach emotions to him it is very forgien, so i guess at lot of the time he is simply overwhelmed with feelings which seems to result in a meltdown. I do make sure that he knows that his response is "not appropriate behaviour" which helps him identify that it is not ok. If he is feeling overwhelmed it is also helpful to give him a place where he can go to "reset his brain" as we call it e.g his bedroom, bathroom, trampalene Consistancy in my response is very important. We are very lucky and have a very supportive school and up until a couple of years ago had am amazing speech pathologist. Our school is setting up a support group for parents so that we can discuss these kind of thing and see what answers other have to some of beautiful kids more quirky behaviour. Sometime it is just a matter of asking people in the wider community. I said to someone not so long ago that it would be easier if he had a limp because then at least people would expect him to be different instead he looks like any other kid and then shocks people with unusual behaviour. I am not sure if any of this is helpful but know that you are not alone and that sometimes you find answers in the oddest of places. Take care.

Emilie - posted on 01/09/2010

I hear you. My son is 4 1/2. He is running off - a lot. My mom (who was a special ed teacher 20 years ago and raised 4 children) thinks that she understands and that I just need to be stricter. Unfortunately, that's not it. I do recommend getting some help. A psychologist, behaviorist, or even OT can help you brainstorm ideas to try. All of those professionals have been very helpful for me as I try to keep my high-functioning PDD-NOS son involved in plenty of activities with other kids (not on the spectrum). Sometimes its a good intervention, sometimes its support/venting, and sometimes it is something really helpful to say to the other parents - who usually have tons of advice on what to do with my "defiant and difficult" child - he's neither, btw. Remember, you are the one who knows your child. It's hard, but sometimes we need to ignore even well meaning close friends and family when they are not being helpful/supportive.

Tammi - posted on 01/09/2010

Lynette if your question about my approuch and working with the school was for me. I have a wonderful school now for my sons and we work as a very tight team, obviously the same things that we do at home dont always work at school (my boys cant get up in the middle of a class and go for a run or bike ride on their own) however we have addapted our home technics that work to school enviroment. If H gets in a fluster at school he tells his aid he needs a time out and they walk around the oval for 5mins together, sometimes talking but most times just walking fast with H rambling and raving till he calms down. We have had to put a time limit on it but it is working thus far. Hardly happens at school though he seems to leave his meltdown till he gets home if he is going to have one, same as with his brother C. I guess at home they feel safer doing so as here they are not judged by their peers.

Gwen - posted on 01/09/2010

Hi, i am so sorry to hear what you are going through Emily. My son is six now, and we had meltdown for years, they are not as bad now thankfully, but I do feel I am always waiting for the next one! What I find has helped has been diet changes and tinctures in his juice, for instance Passive Flora, which is calming. Also, social training has been amazing for him, so you need to get these services asap. Ive also used books I have gotten on amazon, to help with his temper. And I always empathise and state I understand his anger/frustration, which seems to help. Your son is nine, so there are a lot of hormonal changes happening too. As for family, both mine and my husbands, apart from my mother in law, have NEVER helped us or even tried to understand! I still get so angry. This christmas was awful again due to them, and I feel my son is consistently excluded. Ive decided to just stay away from them now, because there is no point.
Surround yourself with people who do understand, and get the help you need, by calling all the services in your area, it is hard, but dont give up, and harrass them until you get it.
Gwen xxx

Rene' - posted on 01/09/2010

My mom and me were once talking and I had, had a rather crapy day so I vented at her like a crazy person. When she told me I should expect my daughter 11 at the time to be expected to understand the dangers of her actions, especially fighting with her brother. She is ADHD and Aspergers, and my son doesnt have the same issues so sometimes I expect him to walk away, more than her.

So I told her doesnt she understand she is disabled, for me to be upset and punish her for her outbursts like a "a normal ] I hate that " kid. I responded when a child that is paralyzed would you really expect him to get up and walk. I know I ranted but, specail needs is just that. They need extra patience, love and reassuring even when they totally misbehave. You have to try to get them to understand the dangers of there actions and keep reminding them. She has no stranger danger- the concept is so hard for her to grasp from a aquantance and a trusted friend. Then of course she doesnt think out her actions. She has no fear of I could get hurt, and half the time when she does her pain threshold is so high. She doesnt recognize how lucky she didnt hurt herself worse.

Sorry for going off.

Vicki - posted on 01/09/2010

I am at my wits end with my two as well. I am fed up with people who say there is nothing wrong with my son. People say he just needs some discipline. I have 4 kids 14, 10, 9 and 8. My 10 yr old has aspergers and my 8yr old high functioning autism or aspergers, they are undecided. not much difference in the scheme of things. Jasmin my 10yr old is medicated and it helps. I think i will have to look into medicating my son. I am starting regular psychologist visits too for my son. I understand where you are at. Behaviour is always going to be a challenge with our kids.

Lynnette - posted on 01/08/2010

I think that its important to make the distinction between bad behavior and autistic traits. In our household we do not allow my daughter to just act up, as her brother, is only 18months younger than her and would see it as unfair. I like the idea of the emotion bears that Tammi mentioned. I also like the idea of physical activity - its generally recoginsed that exercise decreases stress in EVERYONE! I am interested in how your methods worked with the schools' approach?
Dee - I think that you need to start off by telling yourself YOU CAN DO THIS!!! You need to try and give yourself time to deal with whatever behavior your son is exhibiting. (walk away, count to 10 etc) If there is a pattern, around a particular event that MUST happen (Like bedtime, for example) try ignoring the behavior, if he is safe. If this isn't an option use as few words as possible to give directions. Keep repeating the same, short direction. Chances are that this will take a long time at first, but if he sees that you are not giving in, you should see a decrease in the length of time and then eventually he will reduce the problem behaviors. Be patient, set yourself a goal for what you need to happen, and try out different techniques based on your sons character, your other children and YOUR character. there will be trial and error involved. Professional support such as a behavior team may also help. We attended a parent class when our daughter was newly diagnosed, and this helped if you can find one in your area.

Lori - posted on 01/08/2010

I would like to add some info about the melt downs. If there are loud noises when the melt downs start, then remove the noise or remove the child. My son loves music and has been in band/vocal since forever. But, when the band plays for basketball the noise of the buzzer going off sends him reeling. For many years now, he has worn ear muffs (like the ones shooters use) during basketball season. (The noise doesn't seem to bother him at football games). The para takes them off when he needs to play during performances and puts them back on afterwards.

You might see a lot of me coming back and adding things as I remember them! Have had a lot of experience and would love to help in anyway I can!

Lori - posted on 01/08/2010

Hello. I'm a mother of a 19 yr.old son with autism. He is very high functioning and is verbal. He is not on any meds and has not had any seizures. My ex and I never put him on a diet as he has very few things he eats anyway. But, there is another boy in town that has autism and he is not verbal. His parents put him on a diet and last I knew it did seem to work. They basically took out all dairy. He also has been taught sign language so at least he can let his parents and teachers know what he is trying to say.

I have to say that in this small town, we have been very privileged to have understanding teachers (for the most part) and a wonderful special ed co-op. I could go on and on as my ex and I have been through a lot (our son has special needs too), but the melt downs have become less and less the last few years. Don't know whether to attribute that to going through hormones or learning of what is good/bad behavior.

You parents out there that don't have the support system we have had, keep looking! Go talk to your teachers, principals, superintendents. Find out if they have a special education co-op and get IEP's (individualized education program). In the state I live in, it is the law that children with special needs/learning disabilities have this available. Most importantly, do not give up!! You are their only voice.

I hope I've been able to help.

Dee - posted on 01/08/2010

Hi I have 3 boy's my middle child at a parent teacher meeting in Prep,the teacher mentioned Asperger's we had never heard of it until we went to a psychologist,whojust said if anything he might have a slight touch of Aspergers,but nothing to panic about,but he has he's moment's were he never stops he nags,he pushes tugs at me has tantrums about nothing,he is a very smart boy,he is 6 and can count to 200 he know's he's alphabet he reckonise's word in books he really wants to learn to read,now the teacher thinks it might be alot of shyness but he is not that at home he will kick and scream and go crazy and go aound in circles and shake he's whole body and make silly noise's,it's not epelatic fits he just wobbles he's body parts while lying on the floor and talks back to me and annoy's people all the time. it becomes fustrating and I dont know how to disapline him as he runs away and talks back to me especially when I try and reason with him he just over talks me and says thing's like I'm not listening,I carnt hear you,and blackmails me all the time,I'm lost for wodr I know he has a slight touch of Aspergers I hope it doesn't get worse as he gets in he's teens,sorry it's so long,I have trouble getting him to understand me,wether he's unable to or he know's but just play's on me I dont know,He's the middle child of 3 boy's,help Deidre

Tammi - posted on 01/07/2010

Sorry for such a long post

Tammi - posted on 01/07/2010

I am not sure if what I am about to say will go down very well or if it is appropriate as it is only what worked for us.

I have now 16yr old identical twins with ASD.

When my boys were small I did everything by the book so far as their ASD goes, I tried all the diets, I medicated, I did behavioural management, I attended every seminar and course and centre I could, etc. etc. etc.

At around 10yrs old I stopped..........................I had come to the point where I just couldnt even look at my boys without thinking WHY WHY? and being angry with them, the world, myself, everyone.

I took a step back and decided to do things my way.

We do not make excuses for behaviours in our house, we expect the same standard of behaviour for every member, we have the same concequences for bad behaviour for everyone also.

I basically got very very strict. Obviously I had to put the rules to the boys different to my other son, we had them on charts with pictures, both the bad behaviour, the consequense of that behaviour and then a section for rewards for not breaking that rule for certain periods of time. We also introduced chores at the same time and a pocket money system if chores were done.

My house runs like a boot camp in a lot of ways, I am very very strict, you dont get away with ourbursts, if you have one, we go for a bike ride, a good fast bike ride together so you can work that anger out, and then once my son has we stop and we talk about what caused it. It can take time to do this as conversation even at 16yrs old is tough, when they were younger we had cards that I made up using the Bear Cards for sexual abuse victims, they have all different expressions shown very clearly showing a very very broad range of emotions (I wish I could find them again).

Anyway basically we use exercise as a means to calm down (this takes a big time commitment from Mums and Dads as you have to be willing to drop whatever your doing to go with them for a ride or run or walk) and after exercise which works wonders (especially during pubity) we then talk. I find a lot of the time its as simple as something was said or done and C or H didnt understand why and got frustrated with themselves because this made them feel silly. We rarely have the same outburst for the same reason twice, once its talked about and vented its sorted.

Am happy to say we have maybe 3 outbursts a week each now and they are quickly sorted as above, its something that for US has worked really well. That and I refuse to make exuses for bad behaviour, my house my be their little ASD safe castle now but they are not long off having to live in the real world and the real world wont give a rats if they have ASD and do the wrong thing, I am preparing my boys for the real world, I remind myself of that before making any desisions.

Parker - posted on 01/07/2010

I have a daughter who is autistic/ epileptic and some other ailments she is 12 but my family still do not totally understand her and don't think they ever will. She has never been looked after by anyone else as i do not think anyone else could cope and understand her. She also vents her frustrations either towards us her close family or her belongings. But it is her way of expressing herself as she finds it difficult o explain how she is feeling. All i can say is keep strong with each other, one day there will be light at the end of the tunnel. Physically and mentally it is draining but they always show there frustrations on the people they love. My daughter is finally at a special school and life is just that little bit better than when she was at mainstream and classed as the naughty child. Its ignorance r.e other people and now i just hold my head up high and ignore other peoples looks or comments and concentrate on our family keeping strong.

Lynnette - posted on 01/07/2010

Thanks Elizabeth! My daughter doesn't use much language, but she understands almost everything. I know that this is very frustrating for her and I want to find as many techniques as possible to help her express herself! I don't know if there is an acute psych center she can attend, but at least now I know to look for one. Her outbursts aren't very bad or frequent, but she is motivated to talk when she realizes that she is understood. As she gets bigger, even a small meltdown is difficult.

I wonder, has anyone tried meditation for children with ASD? As a lot of issues arise from anxiety in particular situations.

Heidi - posted on 01/07/2010

Hi.my son has asperger's he is 13 now ..to help with his meltdown's i gave him tape recorder to record why he is so angry, upset, ect...also social skills group help..he is also medicated..i get that some family members don't understand what the child is going throu..hope this helps some

Elizabeth - posted on 01/06/2010

Hi Lynnette, I think you meant me. I spoke about my daughter having to use her "feeling words". My daughter becomes over-wrought when I or someone cannot understand what she "means" and this makes her agitated and angry. Her counselor taught her, with the use of a "chart" what words to use when she's angry, sad, jealous, mad, etc. etc. The chart has a ton of facial expressions with the "words" under each face. No ASD child can remember them all so it's important that the chart stay on the fridge so that if they forget you can ask them to show you on the chart how they feel. Try to intervene "before" they've gotten too far into their tirade. Always remain calm and talk simple and plainly. Do not use run on sentences, otherwise they spend all of their time trying to piece together what you're saying.
The school was never at any time any help, other than speech twice a week and a fine motor skills teacher twice a week. Nor did they ever help in pointing me in the right direction to "get" help. I went to a local acute child psychiatry facility. They realized right off the bat that while my daughter speaks, she didn't like eye to eye contact and that her receptive speech was poor. She knows how to say words the same as anyone, but doesn't always know the proper words to say or how to put them together.
But their biggest goal was to teach her how to use her feeling words so that she could calm herself, and hopefully get her "fits" under control. The older a child becomes, the harder it will be for a parent to handle them.
Feel free to message me anytime. I'm out here "winging it" just like the rest, but I never give up and I never say "she can't". Always glad to share whatever information I can.

Lynnette - posted on 01/06/2010

All of the comments have been really interesting, and i wanted to ask Katherine about the 'feelings words' that she mentioned using with her 7.5yr old daughter. My daughter is 8 and has some language, and gets frustrated when she can't be understood or is overwhelmed with emotions/events. How can I get started? Did you get outside help, such as from school?

(i don't know how to do the quoting window-guidance on how welcome!)

Cindy - posted on 01/06/2010

FAMILY: Family members don't understand for many reasons. One is because Aspergers doesn't "look" like anything. ( ADD, ADHD OR ODD don't either!). Children with Aspergers don't have identifying physical traits such as leg braces, wheel chairs, etc. Especially the higher functioning ASD the less people can "see" that the child is special. The flapping and clapping isn't as evident. They are also uneducated as to what ASD means (Autism Spectrum Disorder)-- and how to act around a person with it. They often see it as a parenting issue and not a disability. You know better, right?



This isn't a parenting issue. Your son is 9 and takes meds. While it is a bit early-- he could be experiencing the chemical changes within for puberty. School may be giving him more issues. K-3 grades learn to read. 4th grade on up we read to learn. Children are also expected to retain and comprehend more sophisticated and more volumes of information. And guess what? He isn't so small anymore, is he?



It is time to revisit a counselor or specialist for some ideas and help. Take a break when you can and renew yourself. And evaluate what the new triggers may be... really look at what is happening before the meltdown.



Good luck. Oh yes, send some info to your family.... with definitions, characteristics and tips for helping out.

Sherry - posted on 01/05/2010

i can feel your pain, my son is six and has been diagnosised with autism since he was two. we recieved the dig. from a ped. nurologist. he is currently on risperdal with great results. he is nonverbal, but i'm sure if he could talk we would have problems because his behavior can be embarassing at times. he does not know social boundarys. he touches people inappropriatley. i just say i'm sorry and keep going. my husband and i are his caregivers, there are no daycares here that will take him. people are very put off by autism, they don't know what to expect. i think we have to put our children out there in the public, schools, churches, stores and anywhere else someone thier age would go. the more people are around our children the more they will be accepted. my son has the same rights as anyones child, and i am going to make sure he gets it. i'm sorry if that bothers others. i was also about to lose my mind with behaviors and crying all the time until he started the risperdal. it has given us more of a normal life. if he is medicated now and you are still having problems maybe you should try something else. keep trying until something works. also my husband and i will relieve each other if it gets too bad. he loves to ride in the car so i will load him up and ride around, giving his dad a much needed break and then he returns the favor. plus since starting the meds he now has a bedtime of 8:30, which also gives me some time to decompress. good luck and keep trying, i tried the diet, didn't work for us, meds. were the last resort, but i'm so glad that we did it, he is also happier now.

Sheila - posted on 01/05/2010

My sister once told me that if some stranger offers unsolicited advice, comments, to either ask them when did they get their degree in children's developmental issues or to thank them for their expert advice and opinion because the pediatrician, neurologist, and therapists that he has been seeing have offered absolutely no advice! It made me laugh when I was feeling low! It is a quick comeback line that i keep tucked in the back, but unfortunately, tend to need when child is in a complete meltdown, so my focus has to stay on him and not the rude idiot who has no idea what they are seeing.

It is so easy to judge....but harder and nicer by far to offer help.

Sheila

Benita - posted on 01/05/2010

Quoting Emily:

Is there anyone who has responded that is in Australia... Im in Melbourne and not sure where to look for these types of therapies????

i am in australia and i would suggest calling an early intervention centre,  any state. ask them if they know any where/one to help you locally and they should be able to direct you and help you to find someone who is in your area. I would highly recommend a few but they are in N.S.W (east coast) and i know all the states do things a little differently. Pick up the phone and beg for contacts afterall most of the therapists have contacts in other states and they know  other contacts and so on. Early intervention  therapists are usually very willing and infact wanting to help anyone in your situation.

Big fan of early intervention- ABA therapy, pecs and all the support they have given me. Wouldn't have had the success story i now know with my son without them. Please get in touch with them.

Elizabeth - posted on 01/04/2010

I cannot speak to "diet", I myself would warn against most diets since most ASD kids are pretty picky eaters as it is. My daughter is 8 and just finished a year of counseling on anger management and talking about her feelings using her feeling words. It has done wonders for her since her outbursts and meltdowns were daily (sometimes several times a day) from age 2 to age 7 and a 1/2. Now they are down to zero. She still gets angry and frustrated, but she's stopped throwing and breaking things, and stopped hitting ME. It's easier to bring her back down now. The language barrier between ASD children and everyone else is usually their biggest trigger. When they get angry or upset they cannot find or don't have the words to explain to us "why". I highly recommend looking for an acute child psychiatric clinic in your area. My child went for one hour a week for 6 months and then 1 hour every 2 weeks for the 2nd 6 months. Good luck to you.

Emily - posted on 01/04/2010

Is there anyone who has responded that is in Australia... Im in Melbourne and not sure where to look for these types of therapies????

Lyndsee - posted on 01/04/2010

Hi Emily My name is Lyndsee and from my own experience with my eight year old dietary changes due very little if he is that far into his behaviors. If he is not already attending behavioral management or peer therapy I strongly reccomend it. Although it is very hard to find a program that the whole family is happy with.

Emily - posted on 01/04/2010

Thanks everyone for your replies. They are all very helpful.

Katherine - posted on 01/04/2010

Most people are afraid of someone who in their eyes is 'different'. They don't know how to respond and think you should be able to control the situation. I don't know where you live but I have seen great results with Applied Behavior. A behavioral psychologist works with you and your child and it's goal oriented and fail proof. The child can never fail the program. I would suggest you look into it. It can be beneficial for you and your family AND your son.

Holly - posted on 01/04/2010

AUTISM SPEAKS IS A GREAT PLACE TO FIND OUT WAYS TO DEAL WITH ALL THE MELTDOWNS, AND TONS OF POSOTIVE REINFORCMENT AND REDIRECTION. YOU CAN DO IT GIRLS. FIGHT FOR THEM! I WILL HELP.

Holly - posted on 01/04/2010

Hi Emily,
My name isHolly, although I do not have a child with any special need, I have and am still working with children,and their families. Please dont give up, and try whatever is out there. At one point you can say to yourself "I am doing all I can, and you are only one person. He needs you wether he can tell you or not, and one day you will see that YOU through everything were and are his greatest strength. I know your tired to the point of exhaustion, I know you feel like you just want to ball up ,and cry, but know that he has a place in this world and your a team. He cant do it alone,and neither can you. Find support elsewhere if your family doesnt understand, because truth be,,,, not alot of people do. It is you who has to watch the stares,and you who has to stand tall through the meltdowns, they can walk away... you cant. I am here to be a friend a,dn just tell you ..... You are doing A Good job.