Lyndsey - posted on 05/11/2009
Hi all i'm Lyndsey and i have a 5 and a half year old son who was diagnosed with high functioning autism just after his 4th birthday. He's still in nappies but is at a mainstream school with 1 to 1 help every afternoon. To look at him u wouldn't know he has autism. He is now interacting well with his classmates (with the exception of 1 child who winds him up all the time) and his speech has come on loads. He still acts a bit babyish at times but i can deal with that. I love him to bits and without his little quirks he wouldn't be him. I'm very lucky that he has it so mild as i know it could be a lot worse and much harder to deal with. Just wanted to send everyone a massive hug and let u know your all doing a great job xx
LINDY - posted on 01/13/2009
hello my name is lindy i have a three year old son ethan he has autism he is delayed in speech and has a lot of sensory problems it is very hard work every day for us like every one knows but im VERY proud of my ethan he is so beautiful and his speech is gets better every day he works so hard everyday he is our first child and i thank god everyday we have him even though sometimes you feel like you could give them away sometime but i suppose that with all children just wanted to say hi and hope to be able to chat you guys and vent my problems when they come up lol
my son is 5 1/2 and was diagnosed 3 years ago this christmas as a high functioning(ppd) child with adhd and slightly hyperactive by ped neuro., at 2 1/2 he had a mri done and they found grey mass in the back of the brain area, no tumor, so when we did a recheck this past may the grey mass had disappeared. the neuro was worried that if it got bigger it would effect his learning and something else was wrong. but he growing and learning at a consistant pace and the doc is very please, patted me on the back and said keep doing what ur doing mom.
in the beginning of the year they changed it to plain autistic based his behavorial and social skills. he has attended special ed ps since he was 3, he gets speech and pt. he was tested by the school and the school feels he is not autistic at least his results are not autistic, in fact he is bright little kindergarten child so they say.
when my son was young his speech was almost non exsistent so we taught him some basic ASL to help him express his needs, in fact when he was being tested he will replied in ASL which didn't help the school.
we live in NJ US, we are very lucky because there a lot of money pumped in the my school district for children with autism, i will never move from here until he is done with school.
hearing the news wasn't easy the first time never mind the second time. it took me sometime to adjust my thinking especially about what the future may hold. my husband on the other hand took almost 2 years to finally admit the doctors were not wrong. things have to be done differently for my son. my husband is all or nothing bozo.
my oldest has several leanring disorders, she at 13 had adhd,written language disorder, and a short memory that is not what it should be, but a great long term memory if you can get the infor into long term!
both kids are doing great in school/ honor roll and all for the oldest and adjusting nicely, both are on meds to help them focus and keep their behavior in check, my son can bounce off the walls anytime of day or night.sleep what is that,lol i figure i can sleep when i'm 6 feet under,lol.
some days between the 2 kids i want crawl under a rock and other days are some sailing...unlucky for me as these two has played a part in the demise of my marriage. my husband has no clue on how to take fof these kids. he knows what is wrong but still tries prove his way is right. so he stays at work more than normal and spends very little time with them by choice, leaving me to shoulder everything and by god i do it all and than some.
Kerry - posted on 12/08/2008
Hi beverly, LOL @ therapy, basically there is nothing around up this way. Stuggled through everything the hard way. with no 1 We tried a lot of seesions with the ot at community health but as lack of funding gets in the way out here, the ot could not do dedicated time for him much. And then we got to the problem of there not being any response, there was almost a year when we would take him to see the ot but he would not listen or participate because there were others in the 'group' (around 3 with sensory issues), so until he spoke to the ot directly and said hello, he would sit outside until he would greet her, she wasnt letting him ignore her.
WE tried finegold diet (the only suggestion any health professionals could come up with back in the dark ages of 15 years ago). Son ripped the diet sheet up off the fridge and then told me he was not on a diet anymore.
There was also NO funding at all under any of our govts programs until after son was 15 and i had 2 brain operations for aneurism, when i could type again i email bombed every minister in australia, including qld premier. I was scathing about the lack of disability services and how qld especially was a joke. around a year after that we were put on the familys program so then at least there was respite available to me then (yay someone could finally afford the service). Any other programs that would have been of help were not available up here. we did the things that the ot could swing us into and i think mostly were training me to ignore a lot of his behaviours. There was one called 'managing young children' where they put you in a room and videotape you and the child while you give them instructions. then if the child does not follow the instruction precisely you have to turn your back and not say one word to them or look at them until they do exactly as you told them. This program works for under 5 yo and i think by the time we did it my son was almost 8 and he figured it out very quickly, so would do the behaviour the team wanted very quckly and compl;y, so he passed that course.
No2 child my daughter is mild so when she regressed at around 3, i took her to see Tony Attwood who told me that she was definatly on the spectrum. He told us that if we were in brisbane he would want her to have sessions at least once a month, but we are 10 hours away from brisbane and couldnt afford to get there. So i did homework with her, we worked on the speech and how to tell me what was bugging her. She still has a few differences but makes her way through mainstream without too muich attention (thats good she hates attention) and she knows to save her little troubles to ask me about them. I immersed her in the phrases we use in everyday speech that can confuse an autistic, so it became normal for her to hear things like "frog in throat" and not go looking for the frog!
no 3 darling son has basically been suspended or expelled from every primary school within 40km. High school is going to be a challenge. We did whatever course was available mostly through community health and his child councellor, all the things about being non violent and how to deal with conflicts etc. No suggestions from any professional about gfcf diet or anything. So next year is still another challenge how to have him spend at least a few hours a day at some form of schooling. They have a program of lots of outdoor education which he has been going to for a few hours 3 days a week, that i have to take him the 20km to and collect him from (no wonder i am tired).; ans supposedly when he does actually get to high school age he will do some class work (apparently). I am really annoyed at our school system and think we desperatly need, in australia, alternative schooling and autism specialists in every school full time. The autys i know do not work the same as others, esp the naughty ones they keep getting bundled in with, still trying to make square pegs fit in round holes. I can see why a lot of australians with autistic kids are making their way to canada and the usa where help esp school help, can be found.
Good on you for doint the ABA i wish i had found out earlier and learned how to help instead of just stuggling along hopeing to be able to do enough to keep the kids from becoming criminals,
Beverly - posted on 12/08/2008
Hi Kerry Lisa, Hilary, Kim, Ann and Crystal
Hope you are all well, I'm happy to see some new personal stories, thanks Kerry for your suggestions, and Kim I hope Joe is well...funny really but I think of him often, wondering what he's up to and really wish I had the miricle cure for his toileting needs, we are working on no 2 on the toilet at the moment (Mitch is 5), the ABA therapist said I'm to sit Mitch on the toilet every day for 30 seconds than reward him with chocolate or something he loves when he stays still...(He likes to poo with nappy standing up while occupied with the computer or TV, I'm sooo looking forward to the day he can go without nappies day and night. So Kerry...4 kids 3 on the spectrum boat, you deserve a medal! What therapies have you tried? We started an ABA program in September and it has been the best teaching tecnique we've tried, very expensive though but with thanks to the good old gov here in Australia we have just recieved a 6K gift certificate of sorts for therapies http://www.facsia.gov.au/disability/auti... I have booked about 4 thousand just for December we must spend it all before Feb when he starts school.but I am really enjoying shopping, writting letters sitting in a cafe and just chilaxing on my own while Mitch is at ABA.
Bed time now
Well wishes to all!
Kerry - posted on 12/07/2008
hello all, I have 3 out of 4 of my kids on the autism 'boat" It cn be a tough ride, especially here in australia (regional queensland, beverly) so finding any help is a bonus. Go with whatever interventions you can find and push for more. My oldest son is Classic autism but 3/4 can deal with his personal cleanliness. However, I still have to mop the toilet and clean up after he has been in there, he squats over the bowl. It got to the pooint where to me that was a huge step forward, at least he was in the right room! At 21 its a bit embarrassing when someone is visiting and wants to use the toilet, you have to think about it for a minute and apologise in advance in case mr messy has been in there without you knowing!
At 21 my son is still not ready to work, some good signs are showing though, he is getting bored sitting in his room on his own most of the day. He jsut doesnt understand the hours involved and that he cant just walk off when he has had enough. The disability employment officer tried to help out, they have places where they have found people willing to work with the disabled (it helps that there is govt subsidys to these employers too) and they try to work it so an employment officer goes to the job and supervises for the first week or two, then the person can do the work on their own, with regular visits/checks with employer and the employee to see how things are going.
I guess its an assisted employment program, which is a good start to learning how the real world (mummy isnt there to answer the questions or do things for them) works.
My son did this when he was about 19 but it was unseccesful as he didnt understand the whole 'work' regime. I havnt pushed and when i think he can handle the full workday thing i will redo the trial. I want to be careful so i daont cause any more difficultys. One thing he did do though was hold in his bowels etc for hours until he came home, then would be feeling ill, so perhaps some time was needed there until he felt more secure toileting (several things there, the touchy bowel, new places, new smells, fear of other peoples germs. he started shwoing difficulty about this in kinder, would NOT go near the bathroom because there were NO doors and the toilets were for "midgets", he used to tell me he wanted a real toilet that smells like the one at home (pino o clean) ). The delayed development means that these things will happen but they do it in their own time.
I would suggest looking for a job for him in maybe a plant nursery, animal pound or garden suppl;ies?? these seemed to be successful in not making the disability hugely noticable. My son does an hour a day at the local bakery, he occasionally at busy times can hlep cook, but mostly his job is to fill the refrigerators and clean the shopfront. He has his little list of jobs to do and his boss says you can see him mentally ticking off things as he does them. Its a bonus that she understands autism and as long as he isnt outright rude to people, doesnt expect him to be dealing with any customers. Over the 5 years he has done this job, he has been able to get to where he can actually look at people who come into the shop and will follow directions of other staff is something needs to be done. WOW that was a huge step.
good luck and give it some time kim, perhaps explaining to joe that baby steps are needed when first looking for work.
Beverly - posted on 11/02/2008
Thanks for sharing Kim, your story has touch me, hopefully someone somewhere has the key to teach him, I'm doing an ABA course in a few weeks, they have such a unique way of teaching children on the spectrum and I must admit I'm starting to understand new ways of getting Mitch to do things by using a singing voice and simple commands like "Come here" Sit Down, Milk or Juice etc, He keeps smilling at me and saying "Happy" and doing as I ask so I'm feeling triumphant at the moment I was just watching Mitchell's session from Friday and she had him sitting down, hands on lap and answering questions and doing different tasks we were amazed! They use lots of praise when they do every little thing and give them breaks and rewards inbetween tasks. Well wishes to you, keep in-touch
Kim - posted on 11/02/2008
morning everyone, and thanks beverley for those kind suggestions with joe.. here is joes life since a toddler he is now 17 (in 2 wks) when you read this please dont tie every child with aspergers as the same.. joe was born as normal as any baby, although the giving birth part i cant remember for some reason i have blocked that out, why? i dont know was it a very bad or stressful experience or could the fact i cant remember have something to do with why he has this disabiltiy i dont know. i remember that joe would stand in front of the tv like right in front of it, and if you tried to talk to him he just wouldnt or couldnt hear you, well we thought he was deaf and went to the doctors, no his hearing is fine i was told, he would have tantrums, throw things, head butt me, that was a everyday event, if he was holding something and i would say joe put it down he just dropped it... my health visitor at that time said its the terrible twos and i know what your going through, i thought no you dont and no this isnt the terrible twos. i knew this becasue of my older son, and they were completly different, i then decided to change doctors and surgerys, and as i did this i got a new health visistor, well in my and joes eyes the best thing i had done, in the two years i had been with the previous one nothing had been done, and yet in the six monthes with the new one, we had appointments with speech therapy, and doctor who specialised in behaviour problems, and then joe was diagnosed with his disability... joe had been statemented and at playgroup, nursery, reception and infants he had a one to one teacher, in his class, she was there just for him, and what a difference, at the infants it was then noticed that joe didnt understand the toilet issue, when he had been younger we were told that joe wasnt born being able to speak or understand the english language, he had to learn it, imagine having headphones on and learning to speak spanish, well that is how it was for joe with the english language.. we had to teach him everything, the simple tasks like joe sit down we had to show him how to sit as we were saying it, you had to do an action with the sentence as he would just stare at you.. joe had no sense of fear, and was found once walking backwards and forwards along the outside of my bedroom window sill, he would jump of the stairs no matter how far up he was, if you looked at him when he was on the stairs he thought you were going to catch him, so i would make sure no one looked up the stairs just past, that way he would walk down or up.. he didnt know difference in hot or cold him or her, all the oppersites, we had to explain, when he went into the juniors i was dreading it, but they done a brilliant job, he even went back there for work experience, and when he did his gcses they were all really happy with him, and always praised me for my part, i didnt do anything just loved him and saw good in him, when joe was ready to leave juniors and go into the secondary school, (high school) i didnt want him going to mainstream, i had seen a school that i wanted him to go to, which was for children like him, but the county council wouldnt listen, they said no he couldnt as he didnt have a behavior problem, little did i know what was to come later on.. well once at high school, joe had alot of problems, the school was alot bigger, and he soiled himself still which was a major problem, at the last school they were so good about this, they would have spare clothes for him, and he was allowed to use the staff toilet, i had to give up work as i kept having to go to him and take his clothes home, my working wasnt fair on anyone.. joe started to take time off school, and i couldnt get him there, he had alot of anger and strenght and sometimes i was frightend, one point joe walked out of school, and walked home, we lived over 1/2hr drive away so imagine a child like joe walking, alone. he had walked out of school at 9 and arrieved home at 2 it took him that long to find his way, i had the police out looking and some teachers were out, he turned up covered in mud and hungry and cold, had got lost and ended up in some fields. all this becasue he couldnt do the work it was to hard for him, no one understood or tried to help, we both ended up at the doctors, then the issue of him soiling himself came up, at one of the many meetings i had to go to, one of the women there. she was to do with the truacny officer, as he wouldnt go they were trying to find out why, well she reduced me to tears and i had to walk out, she said that the soiling was him just being lazy, so i went home and shouted at him, he got in a state, i went to the doctors about it, and he told me that she was wrong, there are different symptoms for aspergers, and soiling was one of them, i still get really emontinal when i think of this, well i cried and cried, because i had, had a go at him and it wasnt his fault, i then got my solicotor involved and tried to have him removed from the school, but the school wouldnt co-operate, they said he could go four hours a day, only mon-thurs, as this is what him being statemented covered. joe is the most loving, caring person i know, that is what makes them special, it has been very hard, and a struggle, he knows he is different, and has some good friends, i get down when he just sits in his room, they like there own space, and company, but we do get him to come out with us, even if its just to the shop and back, joes older brother is 18 and joe is 16 his younger sister is 15 and they have always looked out for him, even now the three of them are in joes room playing a game, and i used to get them saying, why does joe get away with it, joe dosnt get away with anything, he still does chores, he hoovers everyday and does washing up everyday, while im at work, he is different now, and is responsible, he wants a job just cause he is bored, he gets dla so dosnt need the money, he has had help with his cv. his brother and my partner work for the council and joe has been told if he dosnt have a job by next year there is one waiting for him.. as they have someone with same disability as him... so he isnt alone. he is looking forward to that, joe did want to be in the army as his uncle was in the marines, but being realistic he would nt be able to do it.. he did ok on his exmas but i told him i was proud of him as he had done them and whatever marks he got didnt matter to me... he is my son and from the day he was born i have always loved him, yes he is different, but once you have some help its alot easier, i never used to take hin to friends houses, as i was too afraid that he would break something, if i would say put that down he would drop it or throw it, so we never really went anywhere, we have moved a few times, and he has seen me and his dad divorce. kids with this dont like change, everything has to be the same, they like a routine, joe had his hair cut when little and hid behind the tree at school, the teacher came out and talked to him, it was becasue he had had his hair cut and thought people would laugh, he didnt realise we all have our hair cut. in the holidays we had to have lunch at the same time as he was used to a set time at school. takes time, like i said at the beginging all autistic or aspergers kids are different,... soz i have written so much but i find that its easier for me to write down my feelings, and if any of this helps anyone, then i have done something good. xx
Beverly - posted on 11/01/2008
Hi Kim...me again, not sure if any of these schools are near you but perhaps the idea of further education to help prepare him for the working world?
St Christopher's School - Bristol
A residential school for peopleaged 5 to 19 with severe learning difficulties, including autism or multiple learning difficulties. View the facilities and therapies offered plus how to make contact.
Listing Details | Report Broken Listing |
Highfield School - Ely
A school for children up to the age of 19 with learning difficulties and autism. Includes associated behavioural problems, physical disabilities, sensory, communication or medical problems. Cambridgeshire based.
Listing Details | Report Broken Listing |
for more information here is the link http://www.ableize.com/search.php?what=a...
Beverly - posted on 11/01/2008
clothes to change into, my man's Uncle is 41 and on the spectrum, he has found odd jobs through the years painting, bee keeping, mowing lawns, fishing, helping mechanics with tools and sweeping and such, he is popular in a little town and is a delight to be around. He loves my son soooo much, has pictures all over his room of him. Good luck, and don't worry, just keep trying and hoping that something will come along, humans are becoming much more aware of Autism and soon will be more understanding as well.
Beverly - posted on 11/01/2008
Hi Lisa, Hilary, Kim, Ann and Crystal, looks like we are all in similar situations and many who read after I'm sure will find something in our discussions that rings a bell for them as well...just thought perhaps we could all put our heads together to think of a way to help Kim's son get a job. My hubby had a lady with Autism working in the mail room (Lrg companies often hire special needs people) at the last company he worked at and she even met someone and was getting married and would go around telling everyone about it, it needs to be a place where there are understanding and intelligent people, that could help guide him, not make fun of him, it would be great if you could get a stylist or someone to show him a different way of dressing and caring for himself, now there's a new reality series, "How to help integrate into Society... for people on the Spectrum!" Does he like the video camera, playing dress up? have you already tried...Febreze Extra Strenght fabric spray for the smell? Does he have lots of
Anne - posted on 11/01/2008
I also have a son with autism who is 17 and seems to have the same problem your son has. I find it a juggle with a new baby not to get frustrated with the toilet and showering issue. My new partner freaks whenever liam touches the baby to check that he has washed his hands (he doesnt want any germs being passed to the baby). Its good to hear I am not alone! :)
Kim - posted on 11/01/2008
hi beverley.. joe is 17 this month.. he has done a cv and is looking for work, but he has issues with the toilet.. so it hard for him, as he cant work with lots of people and for too long a time, as people would comment that he smells, (i have wrote it like that as dont want to give to much away about him, but also to show what it can be like if anyone out there understands..) everyday i have to say to him joe can you have a shower please, and he says why me im always having a shower why dosnt anyone else.. it can be hard.. he gets disability living alawance (dla) and i get careers alowance. im from hertfordshire in england
Beverly - posted on 10/31/2008
G'day, I also have a son with Autism mild to moderate, he will be 5 in two weeks and has has just started an ABA program, as well as many different interventions the past two years...but he has improved so much the past month and a half on the ABA, they have a unique way of teaching children on the spectrum...good luck to you Lisa and Hilary.
Kim - posted on 10/31/2008
hi, i have three kids, and my middle son has aspergers syndrome, it has been hard work, but he was diagosed with it when he was a toddler, so has had alot of help, i find that you only get the help if you push for it, its i think joe has found it harder to deal with then i have, he has no sense of fear or danger, and had to be taught oppersites, he has left school now and its frighning not knowing if he will find a job, or if he will be accpeted, i have had plenty of times where i have cried and asked why... but i love him to bits, and wouldnt change him...
Hilary - posted on 10/31/2008
My oldest boy is 3 years old and was diagnosed with Autism in Febuary this year and i find it hard to cope with one of my children being know as a disabled child and its horrible so i think that you are doing a great job with your 6 year old boy and i will keep my fingers crossed for you and your middle son and i wish you all the best. I know we don't know each other but please let me know how it goes with your son on the asperges test.
GOOD LUCK DARLING
Love Hilary, Theo age 3 and Blake age 2 xXx
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