my son has asperger

Louise - posted on 01/19/2009 ( 19 moms have responded )

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my son is 4 and has aspergers and some days i find it hard to cope wil it get any better and does anyone have any suggestion to help

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Kim - posted on 01/20/2009

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Welcome to Holland



I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this........



When your going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The michealangelo david. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.



After months of eager anticipation, the day finally arrives. You pack your bags and of you go. Several hours later, the plane lands. The stewardess comes in and says, "welcome to Holland."



"Holland?!!!" you say. What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to italy."



But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible disgusting, filthy place, full of pestilence, famine and disease, it's just a different place.



So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower - paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around........... and you begin to notice Holland has windmills..... and Holland has Tulips. Holland even has Rembrandts.



But everyone you know is busy coming and going from Italy......and the're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "yes, that were i was supposed to go. Thats what i had planned."



And the pain of that will never, ever, ever go away..... because the loss of that dream is a very, very significant loss.



But..... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things..... about Holland.

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Kim - posted on 01/22/2009

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Hi everyone today im askin advice as i'm willing to try anything at present. yesterday my daughter come home from school in a terrible state for 4 and a half hours she was so mixed up screaming, shouting, etc you all know the rest. after 4 and a half hours of melt down she says to us a boy hit her an the boy said sorry. after saying this she settled down. yet it took her 4 hrs 30 mins to find these words,we have been told this is a long time an i suppose i already know the answer . it takes time ino and althought she goes into melt down regulary the ones that last 4-5 hours only happen about once a week, we use the rules of keeping calm etc but i can't bear to see her this way for so long it's so upsetting , any suggestions welcome i have also asked her teachers etc, this is so exausting for her an she gets so low no child should have to go through this xx

Kerry - posted on 01/22/2009

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Yes Sonia, judgemental parents of so called normal kids are the pits.  I find that these kids are usually the ring leader bullys and manage to aim the problem so that it appears to be the fault of the aspie.  It was done to my son for a lot of years, even after i spotted it and pointed it out to the school teachers.  We also had the probleem with a few teacdhers that didnt think that exceptions or allowances should be made for "naughty' kids.  They couldnt understand that one week my darling child could do swim class with the rest, and swim at a high level, the next week she would be terrified of the water, I had to get the PE teacher aside and explain that if she was in a mood and didnt want to get in the water she was having a day where she was scared and he was NOT to force her in any way as she was likely to really find something to be scared of and never go in the water again. (not good for an aussie kid to not be able to swim).



Judgemental parents would say to their kids that they werent allowed to play with my son as he was naughty and had no discipline.  One day my next door neighbour overheard this and went in with guns blazing, she told the woman  that Thaao was very well disciplined and that sometimes she felt sorry for the amount of restrictions and rules he was made to follow, that my son was probably the best disciplined kid in the school and he was certainly a nicer person than her(that woman)child who was a bully and bad mannered. She then apparently told the woman to shut her stupid mouth she was an ignorant (**(& and should educate herself on thaaos disabillity and realize how hard his mother and father work to keep him a nice well mannered and kind child.



OMG that has kept me going for years knowing that my neighbour rallied for my son.  I was so proud that she had listened to the autism explanation and let the ignorant woman have it for making judgements.



Not all people are that horrid, but once you find a place that is good for you and the children, keep it happening as long as you can. Most of the aggression at school can be explained if you have all the facts of what went on, so looking back, it might have been useful if i had asked the school to call me about what had gone on, BEFORE they made judgements or jumped to conclusions and reamed the kid out, so upsetting at least a week where teh child hates the school and the teachers and refuses to return.  So much easier jsut to get it right the first time.



GL Kx

Sonia - posted on 01/22/2009

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Hello I am new to this site also - I have just come through a difficult year with my nearly three year old boy who is going through evaluation at the moment. It has been great to not feel alone in the fears, frustrations and brick walls we all face. The most difficult thing for me has been the judgement from other parents, some would prefer to be blissful in their ingnorance. I have been verbally attacked and had a witchhunt form to remove my son from the local childcare led by the local school councillor - whilst the whole time we were honest and open and never in denial that there was a problem - tried everything to see what helped and to get answers. I dont think I have had a more traumatic and stressful  year in my life - but finally i can see some light at the end of the tunnel and have cut lots of ties and surrounded myself with like minded parents and pray each day for those who are not. I will keep you all posted with our progress - the signs at the moment are sensory processing mainly - thrives constant stimulation, textile, oral. Aggression - biting, hitting out. Has a massive personal space. Dos'nt cope well with change and can get very demanding or meltdown when it happens. Can also go way over the top when excited. But otherwise a very affectionate little man. A confusing mix!!  Thanks.

JoAnn - posted on 01/22/2009

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My son is 6 years old. We have good days and bad days. The good outweigh the bad. We have changed our expectations for him. We are more flexible. I give him choices rather than demand. I keep him on a "strict" routine for eating, tv, and night time. This way he knows what to expect and he doesn't throw fits. When I change the routine, I notice that is when I have the most problems. I read a lot of books. One good one is: "Freaks, Geeks, and Aspergers Syndrome" which is written by a 13 year old boy with Aspergers. I read it and saw so many similarities. It explained a lot of my son's behavior and how an Aspie sees himself. One HUGE HELP was to designate safe spots in the house for my son, it is not a "time out" area. It is a place where my son can be alone and calm down. My son picked his room. No one is allowed in his room, including me, unless he invites us in. He also has "safe spots" at school on he playground (in a bunch of trees) and inside each classroom. When things get really out of control, I distract him with something. It might be a book, toy or candy. Once he gets upset, he cannot see beyond his anger. He needs something to snap him out of it. Once the episode is gone, I move on and forget about his behavior. I do write Social Stories which tells him how he should behave and why. It goes something like this: My name is Alex and I must behave at school. I cannot hit, spit or say bad words. If I do this, I need to go to my safe spot and try to calm down..... Anyway, I hope this helps. I am learning something new everyday. I have to remind myself everyday he is different. If myself or teachers get lulled into thinking he is the same as all the others that is when he has an "explosion." By the way, another good book is "The Explosive Child." It is hard but it does get better.

Kerry - posted on 01/21/2009

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Yes its hard, but then ask your dughter to look up on the net all the people who were autistic the greatest inventors poets and artists! Where would our world be with all the 'different' people?



show jessica the site of wendy lawson and australian lady who figured out late in life that she was autistic (school had her listed as retarded and told her parents she would never be anything) she now has a huge amount of degrees, writes poetry and lectures about autism.  http://www.mugsy.org/wendy/ 



a great read for the autistic person, and for the carers to see that its not all bad, eventually they will find their way.

Karen - posted on 01/21/2009

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thankyou so much. You are so right in everyway. I just wished I had your clear head. It took me a year of arguing with jessicas dad (dad of all 5!), to convince him that there was a problem! And he's great now but I stupidlly thought that was the only fight I'd have to face.!



Thankyou again and I really appreciate your daughters help too, Jessica hasnt really spoken to anyone about her difficulties. I only told her at the end of last year what it was called because then she knew when they called her "spastic, retard etc", she had a rational thought in her head saying, "no" thats not what I have/am!



She has a best friend at school who has many problems too and they are hopefully going to go to the same senior school.



I just hope my daughter can get to 14, like your daughter, and be a great young lady tht excepts who she is, then I know I will have done something right along the way.



At the moment I can't see that! And neither can she.

Kerry - posted on 01/21/2009

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Yes Karen 11 was a difficult age for my aspie daughter too, and she is very mild (girls make more effort naturally to be social).  Try involving her in outside school activity maybe girl guides or some sport? this will give her friends outside the school so it doesnt hurt so much to be rejected by the kids at school.  My daughter has a very moralistic approach to life and cut out the girls who she beleives behave badly (alcohol drugsor sex, even those that wear trashy clothing). My daughter has her friends from dancing and loves to socilize with them at weekends and away from school.



Your daughter may not find it so hard if she finds friends that dont necessariuly go to her school, and she will be happy to visit with outside friends at the weekends only.  My daughter is quite aware of the lack of time each day to go see more distant friends, and loves to make weekend dates.  Socially I think the last 3 years (she is now 14) were the hardest on her so i kept her busy, we visited family friends with little ones she could play with, swimming and the beach and horseriding lessons.



Now at 14 there seeems to be another change happening, she is more willing to be aware of what her autism does to her, less afraid of being a "retard" (yes kids use that word at others cause they are cruel).  I have tried to give her the real story where possible, explain behaviours such as bullys and that some people are jsut plain evil or ignorance makes people nasty, so you need to make sure you have both sides of a story before making any jhudgements.  I told her why other kids are cruel to her and what might motivate them to say nasty thigs to her.  Like one kid called her a fatty she was devastated as she works for 8 hours a week at dancing and this other girl did nothing to be fit or healthy. I  explained to her that she was healthy we ate correctly and she was in no way fat. Then i told her to look at the girl who called her that, look at her situation, she says those things to others because she doesnt have any sport or activitys because her parents both are drunk every night, and the spare money in the house goes to drugs not activitys like dancing, so its probaly that she is jelous, thats all. after some quesstions my daughter saw that i was telling her like it is, and was able to ignore further comments from that girl.



If you explain and especially explain that girls of her age can get very nasty and are usuall y jelous of somethng, she can  look at the puzzle for herself before going into lash out mode. Teach her to ignore nasty, ignorant, scared and jelous people because teen girls nastiness usually fits into one of those categories.



You will get through it, jsut remember to stay as calm as you can and explain in presise detail, situations your daughter will find during teen years, as they occur.  She amy tell you off or pretend she didnt hear you or ignore you, BUT it is processing she can understand.gl email me if you want to ask anything i might be able to help you with (hey my darling teen has looked at this board and says its a great idea, and she doesnt mind answeing questions either)  email me at mum666@westnet.com.au  tc Kx

Karen - posted on 01/21/2009

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Thanks for your words. I'm baffled with myself because I thought I'd got used to it  but I think her birthday reminded me how she will always have these problems.



She has so much hassle at school with name calling form other girls. She retaliates verbally and I feel at the moment the school has forgotten she difficulties.



They seem to have thought, "Oh well shes in her last year in the juniors, before going to seniors, so we'll just let her get on with it"!



She feels very lonely at moment, and I don't know what to say to her to reassure that schools not the whole of your life. Not saying school doesnt matter but for a child such as Jessica, the grades arent the important thing, sociallising is the only reason I put her through it week after week.



I just hope when she goes into the seniors and starts doin g cookery, sewing art etc (which she loves doing), she'll feel better about herself and the other children around her will be more mature than the kids shes with now!



I would love to know if Jessica has any future ahead of her, where she fits in and feels ok about herself.

Kerry - posted on 01/21/2009

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Hiya Karen, no need to be sorry, we all have times like that. And it is specially a thought you dont want to think about your baby joining the ranks of AS.  Where possible we do try to avoid the word "normal" and you will see often the use of NT or neurotypical used instead.



A very big hurdle to accept that your child is not NT, but hey is that so bad in some ways?  These kids with AS are NOT usually deliberatly nasty, dont go out of their way to make others feel bad, and generally i find they are morally superior to many people (even lots of grown adults).



Hang in there, have soem time off and remember to look after yourself too, you are viatally important, who else would look after your dchildren as well as you do? My argumant to myself for years was, i was a damn good mum,k the kids survived to older than 5 so i have dcone a bloody good job.  IF they choose to conform to society norms, good for them, but either way I am the mummy and did the best job i was capable of with the tools allocated to me.



chin up you do a great job and worry about Joseph later, or take him for assesment (specialists are more likely to listen to you if htere is already one diagnosed child in the family) get a real answer on the question, then do what you can to help. Remember when your wonderwoman outfit has worn out, ask others for help. maybe ask your oldest to help by taking joseph for walks or runs teaching him some football, get him active too.  The activiity and team sports all help with the social development!



keep trying, chin up. we are here to listen and we dont judge, we have all been in the place you are in.  Kx

Karen - posted on 01/21/2009

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Hi I am new to this site and never talked about my daughter with anyone but my family and school. But its recently got to me again, that she will never be "NORMAL". Yes I can hear u all screaming at me for using that word but I feel so useless now.



Jessica was diagnosed with Asperger's in March 2007. She was 9 at time and was 11 on Monday. I think thats whats made me feel all emotional again about her because shes ageing but on her baby days/times shes still about 4/5.



I have 4 other children, 9, 5, 4, and 3.



I sit down and regret so many things now! I love all my children with all my heart but at times I wished I could of had a magic ball that would have pre-warned me that I was gonna have a child with difficulties and then I would never of had so many children.!



They were all planned but I hate myself for thinking this way, for not being able to give Jessica all the time and understanding she needs and also for all the time and understanding I do give her, which takes me away from the others.



Her younger sister, Amber, is 9 and the younger children will have to use her as their role-model because they are already noticing that Jessica is different in many ways and acts very strange compared to Amber.



And then I have my number 4 child Joseph who is 4 and showing all the signs of following in Jessicas foot-steps, but 10x worse, (being a boy).



I can't find the patience, time, understanding to deal with them and hate myself when I shout at them!!



I see our lives just going by day by day like a timer but no real enjoyment coming from it, for any of us.



As I said I love all my children  but today (maybe different tomorrow), I wish I could whined the clock back 11 years.



Sorry.



Karen

Emily - posted on 01/20/2009

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I understand how you feel.  I am a therapist and have worked with families for years...I noticed a problem with my daughter's social development when she was very young, so I enrolled her in every activity that I could find.  It helped her alot, so much that diagnosis of her exact disorder has been almost impossible until now.  There are many things that training will tell you, I told many families different things to try.  The most important thing is to remember that something that works for someone else might not work for you.  When you find something that works--stick to it.  Routine is the key.  Sometimes you may have to give yourself a "time out"  you will know when you need one.  There are some areas that will get better as your child gets older, but other areas will not.  The gap in social skills for my daughter has gotten bigger as she has aged, so more people that do not spend significant amounts of time with her do realize that there is a problem.  But this has lead to more understanding in different areas in her life.

Kim - posted on 01/20/2009

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also can i reccommend a routine board this is a board with pecs= small visual cards with pictures on such as getting dressed, tv time, tea time etc the cards can be made for almost anything . (how to use) we use this system for paris we display these in different rooms around the house depending on the situation needed for. its also used in school for her. you place the pics in order on the board as to be done , as the task as been done you remove the card this will help your boy understand what lies ahead as these children are visual learners pictures make so much more sence to them , it takes time to learn your child this system but it becomes part of routine an they can cope better with the changes threw the day i found this a good system for paris we also use this for turn taking with tv, computer etc you have a photo of each person and again remove as persons turn has passed an so on, paris is also very impatient she just cant wait no matter how hard she trys she gets very stressed an mixed up which usually ends up in complete melt down for her the way we help her with time is through egg timers for how long she has to wait. its easier to understand as she can see time passing. and also we have sand or water egg timers they can also help calm her she finds water very relaxing from the noise to watching the rain, christmas lights are another one of her favourites that can help relax her , we use many different ways for different things but we must keep trying to understand these children as they try so hard to understand us :) hope this helps xx if you wish to add me feel free it can be so hard at times an i'm always happy to help if i can xx take care xx

Kim - posted on 01/20/2009

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contact your sons school to find out about courses etc also on the internet the Autistic society, sunrise programs etc ebay for resourses at afforable prices . Kerry is so spot on find out as much as possible Because it can be a very stressful process, if you Know what your talking about it helps as you are the expert on your child :) no one knows him like you do xx

Kim - posted on 01/20/2009

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hi louise my daughter does have rages were she goes into complete melt down , i found the best way was to find out what causes the behaviour i will send a few tips of what is called a detective sheet to help find out what causes the behaviour, as kerry says read the story i will post this also its learning a whole new world but as you learn it you find its an amazin place to be . Also i had issues with my daughter changing schools but its the best thing that could of happened for her , shes so much happier there they understand her needs the classes are much smaller an they learn her visualy a yr ago i was dead set NO shes not goin but inow see it was best for her shes so much happier we still get the problems but she no learns ways to cope an what a fantastic place it is xx an at her school now she fits in cause all the children have ASD of some sort an shes happy shes made friendships xx I will post the other stuff abit later as all my kids are know home from school demanding attention including paris who has a lovely smile and some fantastic pictures for me that she drew xx you will get there xx keep your chin up hun xx

Elizabeth - posted on 01/20/2009

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I attended a GREAT seminar/workshop and the best tip I got is how to diffuse the level of anxiety. When the kids kinda spaz, they are anxious and out of control. We as 'the adult' in the house must remain ABSOLUTELY calm. A purposeful calm, not a bored, 'no big deal' calm. Voice, tone, volume, body language must exude calm. Set them down somewhere near you so they can see your calm and let them spaz for a minute. It's like they have to let the fuse burn out. Allow them that in a safe place. Let them slam their face in the couch cushion, don't force them to sit up straight or whatever.



Losing composure in any way increases their anxiety--if YOU aren't in control of YOURSELF, how are they supposed to be? And apparently, if YOU are bent out of shape, then there MUST be good reason for THEM to be (and stay) bent out of shape.



It has worked SO well I feel like crying in amazement. Letting his anger fits run their course has always been my first instinct, however well-meaning family members and nosy people told me I needed to get my kid under control. Now that I know this is him letting off whatever steam is in his little body, I just accept it. The fits are shorter, MUCH less intense, and when he calms down I am happily available to love on him if he wants. Before I was so irritated, annoyed, at my wits end that I just exhausted myself in every way trying to get the fits to stop and make him 'behave'.



Also, when you are calm, they begin to trust things really aren't a bid deal and you the adult have a handle on things. When your brain isn't frazzled, it's SO much easier to think about and find out what set them off in the first place so you can correct it for next time. Email me directly with any questions because I can't figure out how to tell when pages have been updated and I miss comments made to me.



Remember, they AREN'T bad. They react differently. Imagine being allergic to something. One person gets a rash from something, and that's okay. You get a sneezing fit and get in immense trouble. They are reacting to their environment just like everyone else does, it just affects them differently. They are 'more allergic'. HA!

Kerry - posted on 01/20/2009

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Louise, nag every one you can think of about courses and or behavioural training that might help you understand how and what you are dealing with.  Kim has a good story about visiting Italy that will go a great way in helping you feel better about yourself.



Change is something that can set these guys off in many different ways, some have anxiety, others violence and probably others will sit in the corner and cry.  Each time you see a change and a reaction note it down in a book, so that you can keep track of what is successful and positive, it also is useful for when he has a meltdown at school.



My son would sit under the desk at school if he had a substiute teacher, it was raining or the flourescent lights were on in the classroom.  Even today at 21 he cant stand flouros for long and will flap and melt down (this shows up as causing fights with his siblings these days).  He liked dark rooms and natural light whenever possible. Its a long trial and error and you are going to be the expert on how to understand your own child.  This can be an overwheloming job somedays because it is a constant all day job., dont forget to file alone time, from young so he is used to you having your time out, you get a few hours off each week that goes a long way to helping you stay calm and in control.



BE calm, no matter what the 'experts' say, YOU are the one your child can trust and YOU are the one who knows how to help him. 



Keep routine in your day and try not to vary too often, if you do have to vary give several warnings through the day before and a few hours before, some kids are better when warned of changes.  If you tell him you will do something, do it, or he will think of you as a liar. Dont say you will do something in 5 minutes unless you can keep that to exactly 5 minutes, if you are 30 seconds late he will see you as a liar who doesnt do what they say they will do. This one i found was very important with my high functioning classic autistic. They are the kind who if they said once to you when they were very young, that they loved you, then that stands.  In their mind they said they loved you once, therefore ,you know that and they dont have to say it again, probably EVER.



My darling son at 21 doesnt want to learn to drive, according to him, :I have a perfectly good mother who can do that for me, why should i learn ?"  illogical logic but in some way it works. 



When you have more idea of what is going on in your sons 'head' you can enjoy the ride, some moments are hilarious and others heartbreaking, but all are a learning experrience! enjoy it.

Louise - posted on 01/20/2009

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thanks  does your child have rages as i find that if thing change in the day lewis will filp out ,how do you find out about the course ,i really worry about my son changing schools

Kim - posted on 01/19/2009

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hi louise i have a 6 yr old daughter with autism, and at 1 time i felt exactly the same , i did a time out from ASD course which helped me understand her problems. i do see some improvement with her, as i now see what causes her behaviours. she now attends a special needs school. an things will in time get better in time xx hang in there xx

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