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Awesome Mums of Autistic kids- how many of us are there?????????

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  • Awesome Mums of Autistic kids- how many of us are there?????????

    Hi all,

    I tend to stick around this section of BubHub so I don't get out much lol, but the last 2 days I have stumbled across a quite a few mums with autistic kids. I had no idea that there were so many of us and I just wondered exactly how many of us there were?? I would love to chat with other mums, I get very lonely sometimes as I don't get to speak to many others with children like my son. The special needs girls here are AWESOME but I sometimes think I don't fit in all that well because although Alex is "special needs" his needs are different to those who have tube fed bubs and other such issues.

    Please, please come meet here and share your story! My sons story is linked in my signature.

    Thanks,
    Sara

  • #2
    sara i think i'll put my hand up for this one. Alex doesnt have a concrete dx but so many drs have commented...rude people lol.

    What do you think??

    xoxox

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    • #3
      After DS head injury, at first they used to compare disability with the likes of autism, similiar characterisitics although he doesnt have it, its all brain injury related, quite a few medical professionals have said he had it till they did the nitty gritty tests and finally realised the reason behind his problems were his actual injury not autism. (despite telling them things had changed since the accident)

      I can relate a little, I find it frustrating at times and feel a little lost with all these extra therapy and needs that he has but we get on with each day as it comes and it helps make him a stronger little man and me a better mum too, well better as in i can understand him alot more I do feel a little lost at times though not having other mums who can relate. We get there though thats all that matters and things are getting better each day too

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      • #4
        Hey Peta, I was actually thinking about you when I posted and thinking you would be first to reply!! I don't know if your Alex is autistic, the only thing thta put the thought into my head was you saying yesterday that she would "lose words" like Mum and Dad and stop doing things that she was previously doing, like "high fives." I knew that YOU would be thinking about autism and like I said last night, my Alex does this as well. I'm sure that you know the signs well enough and there is no way that you will let her slip through the net and be misdiagnosed if she is. Doctors are **** and they are so reluctant to diagnose so young. I had to PUSh and push for a dx and if your Alex IS autistic you will have to as well. Grrrrr. Even though we did get a dx relatively early I still look back on things he was doing (and NOT doing) and think, "how the **** could anybody tell me there was nothing wrong with him?" It was as clear as day and I'm sorry I let myself be fobbed off by so many drs and other health professionals. Like I said in the chat yesterday, you have to dig your heels in ans FIGHT. Having said all this though, I truly hope your Alex is NOT autistic it's just her other issues that she has to deal with.

        PunkBaby, I remember your story and I'm so glad things are getting better. the frustrating thing with Alex is we have days even weeks where he seems SOOO much better and we think woo-hoo! It's all paying off and them BAM. It all goes to cr@p again. Like today- we have had the WORST daya nd I think, oh my gosh, my whole life practically is spent on Alex and his autism- attending therapies, doing our "homework," cooking his allergy free food, it's exhausting and when we still ahve shocking days it is hard to stary motivated. I'm glad it is all paying off for you and I'm sure that another day I will say it is paying off for us too.

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        • #5
          sticks my hand up!!!!!

          i think it's great that we can share our journeys and experience.
          I can't believe how our stories are so similar!

          Maybe we should have this made a sticky!!

          Roslyn

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          • #6
            You know I was thinking the same thing- at the least we could make an "autism chat thread!"

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            • #7
              pick me, DD1 - Amelia - has Asperger's.

              hmm. pick my mum although I haven't had the official diagnosis, I am pretty sure that this is my life.

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              • #8
                My hand is up too. DD2 has Aspergers !

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                • #9
                  this is a post that I did about a year ago, asd from my perspective. there is more that I think of from time to time, but usually something has to jog my memory and then I forget by the time I am posting.

                  not sure how helpful this will be, but I thought that I would give a perspective of what it is like for me as someone with Asperger's. the idea came after someone (sorry can't remember who) asked for help for their niece. I figure (I hope) that I can articulate things better than I could as a kid, so I can probably do better than your kids.

                  One thing I would say is that each ASD kid will not necessarily be set off by the same things, so all I can say is how things affected me, and how I felt about things.

                  Hope it helps.

                  I don't like my food to touch each other. My mum learnt this fairly early on, and this is true of my ASD DD also. I have grown out of this, but as a kid - food shouldn't touch.

                  If I am upset, I want to be by myself. Preferably in a closet. somewhere dark, quiet and alone, with a wall at my back. I don't want to talk, I don't want to be held. I want the world to GO AWAY.

                  When I feel better, I don't want to talk about it. In fact, a lot of the time I don't even remember what happened. This drives DH NUTS. He will still be upset, I will have totally forgotten about whatever caused the upset in the first place. It also drove my mother nuts. She always thought I was lying. I used to say, it must have been the other girl. I wasn't lying, I truly didn't remember whatever had happened.

                  If you get it wrong, I will keep explaining or persisting until you get it right. this may be something really really picky. don't say it is brown if it is black. Surely you know that you are wrong! (I have gotten much better at this on the outside now that I am older, I still have issues on the inside though )

                  Don't lie to me. I was devastated when I found out the Santa and the Easter Bunny weren't real and that my parents had been lying to me. I still haven't totally recovered from this emotionally, even though I realise intellectually why they did it. I still find myself questioning the things that they tell me.

                  No matter how much Mum tries (and she owned a dress shop for many years, so believe me she tried) I won't wear clothes/shoes that mix up different colours. Brown top, black pants sure. I will even wear a red top with blue jeans. But not a whole heap all at once.

                  The phone. this one is interesting. At work, I can call anyone no problems. At home, I call my mum, my sister, DH and DD. That's it. I hate talking to people on the phone. If they call me and I know them, that is fine. I couldn't even call my Granny (when she was alive that is), and I loved her to bits. Phones and me just don't work.

                  Ummm, I can't really think of anything else at the moment, and this thread is pretty darn big already. If I think of anything else, I will add it in.

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                  • #10
                    You can add me too. In the process of getting it formally confirmed (DS1 has been dx by paed, being assessed by speechie and psych now).

                    Jane - I do things similar too. I think I am just wierd though - not ASD

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                    • #11
                      You can add me too...My DS 2 has autism. He also has a mild intellectual disability. He was finally diagnosed with autism in March of this year after being told at 3 he was "too social" for a child with autism. He hadn't regressed at all, just not gotton any more mature either.
                      He has great speech (after grommits at 2 yrs 9 months, before that there was no speech, just a lot of screaming), though it is quite ecolalic, and conversation consists of only what interests Jock, so we often have the same conversation over and over in the course of a day or two (or several weeks, lol).
                      He has quite violent mood swings, will be happy as until somebody slights him. Can be as simple as touching a toy he doesn't want you to have (he doesn't have to have been already playing with it), then all hell breaks loose. He throws toys, pinches, bites, pulls hair, hits, swears loudly (not so good when he has a melt down in public), usually a combination of these things.
                      My other children are having a really hard time dealing with Jock not being Neuro Typical. They don't understand how he can be wired differently, and we have many a discussion (argument!) on the subject.
                      That's enough from me, can you tell I don't have any other autistic mum's to talk to at the moment either, lol?
                      I will be back here to regail you with Jock's antic's, I am sure.

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                      • #12
                        This great.
                        With all our own stories i think it helps us to know that there are similarities and it also educates us.

                        Sams mum / Jane your story is amazing, there goes the theory that Autsim has increased iti s merely more recogniseable, although we can confidently say we live in better times for our kids and i am so grateful for the fantastic help my son is receiving!!!
                        His school is absoloutely fantastic, even when his psycolgist did a visit to the school she came back to me and said i have never ever been to a school like this one, she even rated better than any private school she has been too, and said from know on i will be referring all my clients kids to this school, this was last year well apparently this years prep intake increased so much that they had to get another teacher!!!
                        If you guys were in melbourne i would def recommend Southmoor primary!!!
                        They are the most wonderful and supportive main school, and their teachers are Fantastic!!
                        It is also an integrated school so they take kids in with special needs like Downs.
                        If it wasn't for my sons teacher we would of been still hitting a brick wall she is an expert Autism lecturer and has the most wonderful teaching technique for James!!!!!

                        I am so pleased that we have this thread and i wish to share you my sons journey and i am looking forward to reading all of your journeys too so i too can benefit and learn.

                        I Also recommend the book by Tony Attwood, The Complete Guide to Aspergers Syndrome, the first paragraph of this book made me cry and made me realise that i am not alone.

                        Something to remeber mujmmies is that we have the most special kids in our hands, they are truly gifted, this is something we should emphasise and brag about.

                        My brag is _ James is the most talented Illustrator / Artist!!! his drawings are amazing and i have been told that he must attend art school, Strangers and family have been astounded by his art work.

                        So mums pls tell us about your kids achievements.

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                        • #13
                          My brag- Hannah is at the top of her class for maths! After two years of speech therapy she is nearly at the top for English too.

                          LOVE This Idea

                          More brags please!!!!!!


                          Jenny

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                          • #14
                            my brag = for the last four years Amelia has been in the top 1% of the state in the ICAS science exams. In maths she has been in the top 5%.

                            in terms of emotional growth

                            At 12 she no longer has the huge melt downs that she was having years ago. She will still have small melt downs about once a month and will have a cranky quite often, especially if she is tired. lack of sleep equals lack of control.

                            she notices sometimes now when I am having a hard time keeping up with everything and will offer to make dinner for me.

                            she has next to no special treatment at school now. her current school is absolutely brilliant and a lot of the growth that she has had is down to them. We also did therapy programs at QUT and UQ that made noticable improvement from session to session.

                            My two biggest worries now - puberty and starting high school.

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                            • #15
                              I am so glad I started this thread!

                              "mummyof5" You could have been describing my ds. Alex was also told repeatedly that he was too "social" to be autistic. Alex can be very social- on his terms. he makes wonderful eye contact and will interact beautifully- on his terms. He aslo has quite good speech but much of it is echolalic and he repeats the same phrases- eg. "ready, set, go," or "hold my hand". He will hold a "converstaion type," interaction when he feels like it and you can't make him. He is a jeckyll and hyde. He can be absolutley beautiful and perfect one minute and than something sets him off and he LOSES it. Like you said, could be as simple as somebody touching his toy or more often, when he doesn't get his own way. Obviosuly we have the problem now that as well as being autistic he is a 2 year old!!! Sometimes hard to seperate the behaviour. Yesterday he was happy as larry in the shopping trolley until we went down the cat food aisle- normally I let him out ehre and he puts in the cat food tine. Yetserday we were in a hurry, we were not doing a "proper shop" and I wouldn't let him out- he LOST it!!! I could not calm him down and by the time I got him back to the car I was fighting back tears. It was later when I thought about it and realised that it was prob the change of routine that really upset him- not letting him do what he usually does. So hard, sometimes.

                              Sam's Mum- that story you posted was so interesting and I have been thinking about it all day. (I read it late last night.) I also think I have many autistic traits- I don't cope with change, I am obsessive about routines and I cannot cope with things I can't control. Somebody once said to me that when there is an autistic trait you usually find a genetic link- say mum has 10-12 autistic traits. Dad might have 5-7. Another sibling may have 10-12 and autistic child has 20. It's all down to degrees- almost everybody does some "weird things." eg. Wanting all the pegs on the washing line to be colour matching or is funny about hand washing. It only becomes a problem once there are 15-20 traits instead of 5-10! I think that makes sense, lol.

                              My brag- Alex can count past 20 and has been able since before he was 2. (He's 2 and a half now.) He can recognise all his numbers and can count backwards from 20. He is dynamite at shape sorters- everybody comments how clever he is for his age! Also, he is VERY VERY cute. (I have a photo of him linked to his story- link is in my signature.)

                              I am so glad people are sharing their stories and I hope we can all become a support to each other because I REALLY need it!!!

                              Sara

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