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Thread: Aspergers/Autism/Sensory Integration Chatter

  1. #199

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    oh Karla It must have been hard writing it down. The processing is the worst part of it. There is a family at Matilda's school with the oldest boy having Asperger's, and the 2 sisters have dyspraxia.... one that is 6 has it severely and the baby sister who is around 2 yrs old isn't using words yet.


  2. #200

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    Default Oscar, our special little man

    Hello
    I have been a bit of a lurker on this thread and thought it was time to say hello. I am mum to three children, soon to be four. Our third child Oscar was diagnosed with Autism last year in April. The diagnosis also included " an associated developmental delay" that being his speech. Oscar has a severe receptive and expressive language delay. Despite these challenges he is a delightful little boy. We also had speech problems with his older sister our middle child Lily. She has over come this now and her last assessment found that her speech had entered "normal/average" range.
    We have had many investigations with Oscar, speech assessments/ speech therapy, blood tests, genetic testing, paediatrician assessments etc. He began an Early intervention program in term 4 last year and it was really great. He will be continuing it this year too. His progress is very slow, especially with speech. He sings well and mimics lots of songs and Tv shows and movies he likes. But consistent speech to communicate with us is just not happening. He will be four in May and I am scared for the future for him. And there are times when I wonder if he will ever talk to us. Our eldest asks sometimes if he will ever talk, and it's hard for us to answer, because we just don't know. On the surface he looks like a normal little boy, he loves to play with cars and trains and trucks. He loves gadgets, anything with buttons. He has always been a quiet child and we don't have issues with tantrums and things. We are having another child, which is due in May and I am spending time showing Oscar books and magazines of pregnant mums and babies, I put his hand on my tummy and say " mummy has baby in her tummy, you're going to be a big brother", I'm trying to help him get ready for the change. We always wanted to have four children and last year in May I miscarried twins, it was just heartreaking. 2008 was a very hard year, finally getting the confirmation that Oscar has Autism and then the miscarriage, left me a bit of a mess. I have two nephews with Autism, so long before Oscar's diagnosis I knew something wasn't right. But when you get the diagnosis, it makes it final, unchangeable.
    We have had heaps of support, and am learning new ways of teaching and communicating with Oscar. He does let us know what he wants by gesture and such. Often helps himself to our pantry cupboard to bring me spreads for a sandwich or crackers and stuff. We are currently toilet training and he is able to go himself quite well during the day without a nappy on, he gets confused when you put undies on him and ends up having accidents though. We are hopeful that 2009 will bring brighter things for our family and that Oscar will continue to progress.
    Cheers
    Ley

  3. #201

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    Welcome Ley you've had a lot on this past year.

  4. #202

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    Sooooo what is everyone doing to prepare for school? There are 2 weeks, so I'm starting to think about how to prep....

  5. #203

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    welcome Leyza and KarlaO

    2wks till school how did that happen! Xander pointed out that to me just tonight as he was going to bed it's marked on his calender and he is counting down! We should be getting a letter from his teacher any day now which introduces herself etc and apparently the learning support teacher has taken some photos of his new classroom which she is send - oh interesting point for transitioning - DS did this transistion program going and visiting the classroom a coupple of times a week in the lead up to school finishing - problem is now he expects the last years year 1's to be there!!!

    What's the general concensus on school things? Xannys bag/lunch box etc are still in good condition so I was thinking about reusing them for a little while so it's not all new IYKWIM

    I am really confused about what to do with DH new job looming. I wish we would just find out one way or the other so I could prepare for either scenario but on the other hand I hope it takes a while so that he can finish out first term. Grr if this is how our kids feel all the time I can understand why they have meltdowns!

  6. #204

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    oh Sarah exactly! If this is how our kids feel... on the school bags front, I asked Matilda if she wanted to go shopping for a new school bag & she started screaming.... in the end it was because she wanted to keep her Dora backpack. I hope it holds out!! Also the lunch bag front, she wants to keep it. I guess everything else is going to be new or different, may as well keep a few old things.

    Matilda did some trial days last year, we went to the school for 3 days and then a few other "visits". She was so excited. Now she tells me where her desk is and where she eats lunch etc... she loves the school.

  7. #205

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    Karla That is a lot to absorb! Hopefully you will get a lot of help and please join a support group. Your pead (or mchn) will be able to put you in touch with your local one.

    Ley he sounds a lot like Mason! I'm sure he'll cope fine with the baby. One thing I've noticed is that kids on the spectrum are fascinated by bubbas and are accepting that the bub needs mummy more than them. I also think that could be because they get to watch your tum grow kind of like a live picture display.

    I'm hearing about school all the time and how he will be a grade 1-er. A bit nervous about his aide, especially after he had such a wonderful one last year. Wish we could keep her

  8. #206

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    Yes we have decided to stick with everything the same except there is a shoe issue. DS is reaching the limits of his joggers but they are in fab condition - could be the fact they are off his feet at any opportunity :-) now I get a letter in the mail to remind everyone that formal uniform (3days a wk) require leather lace ups WTF? He just had black joggers all the time last year so not sure if I didn't read it right last year but feel a bit obvious now a special note has gone home about it to just ignore it... but DS struggles to get socks on and off I (and he) are not ready for the battle of shoelaces at the moment - I'm thinking of ringing and asking for some special consideriation to keep his joggers or do you think this will cause more confusion (esp if a teacher picks him up on it out in the playground)

    Bonus - he still fits into his uniform from last year - phew. Might pick up one more shirt just so I don't have to wash so often. BTW blessings to the lovely uniform shop lady last year who recommended we get second hand shirts for softness and comfort (I think she has someone on the spectrum - so understanding)

    Also when do you think the best time to schedule an interview with his teacher is, before school or a few weeks in - she is (as far as I know) aware of the situation and I am torn (being a teacher myself) whether I do the whole paranoid parent thing and go in now or wait for her and him to find their feet first?
    OMG I am rambling at the moment - sorry

    Raven - that is so tru about the baby thing! Xander did so well when Ariya was born! And ditto on the aide issue. At a seminar I went to last year they recommend schools change aides at the end of first term rather then the beginning - sounds so much better to me!

  9. #207

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    Sorry girls..i have to catch up...having a misserable emotional day on the Wihelm front. Its his 7th birthday

    Jed and I layed in bed last night talking and I told him how I felt. I told him that I was sad cause 7 years ago we didnt know that our perfect little baby who was about to be born would have to fight discrimination, his own thoughts, the way the world is for him and fight to be recognised for who he is. I remember holding him and smelling him for the first time...how perfect his skin was, how delicate he was and how niave we were to the road ahead for us.

    i sort of wish that it was still like that. I cried my eyes out this monring....he was asleep and I said...
    Wilhelm...Happy Birthday

    and his face lite up...OMFLUFFY goodness he understood!

    All day he's been telling me its his birthday and that its his special day. Its taken his 7 years to undertand it....ahh here I go again...

    Im going sorry girls...said its been emotional day

    will catch up later I think

  10. #208

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    oh Maz that is beautiful. that is lovely.

  11. #209

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    Hope you all had a lovely day Maz, thinking of all of you

  12. #210

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    GRoan WHY can't parents or IL's understand the needs of super kids, or why can't they put kids ahead of them?????

  13. #211

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    Hi Ladies
    Thanks for the welcome. Not too long and school is back. I am impatient for it to start as the routine does everyone good in my house!
    I was reading back through the most recent posts and want to give a huge hug to Karla. I am challenged everyday by my little man, in good and not so good ways, and I can't imagine what it must be like for you to have each of your children have difficulties. It is especially hard when they are formally diagnosed, no one prepares you for the grieving process you go through for your child.
    Oh Maz, I can understand what you mean. I know your little fella is a few years older than Oscar, but you truly do get the biggest surge when there is any sort of understanding, recognition or acknowledgement shown. Oscar's development has just gone at a snail's pace especially with his language. He has a severe recpetive and expressive delay, so anything that we can get out of him is music to my ears. He has only just started to point to things he wants the last couple of weeks and we find it amazing, he is four in a couple of months! I have two nieces that are developing normally and I just don't think their parents truly realise how lucky they are to have little girls that can communicate with them. They are 3 and 2 and talk circles around Oscar.
    I feel very patronised by my family at times where Oscar is concerned. They have no clue what it is like to manage him 24/7. Atm we have been trying to toilet train and things have been going very well, apart from the fact that wearing undies confuses him and he ends up having accidents in them. We have slowly been getting there. Well this week we have taken two steps back, he has constant accidents and has developed a poo fixation. Yesterday while I was checking my emails, he covered the loungeroom carpet and some of the kitchen floor with poo. And himself. When I told me MIL, she laughed and said, "Yeah we had that too when the boys were little. They covered their cot and them selves in poo". This a boy that is nearly 4! Not a baby in a cot! I could have slapped her, I really could have.
    Anyway sorry for the vent. I get very frustrating with my partners family in particular.
    Good luck with getting back to school routines this week

  14. #212

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    mmm Matilda hasn't made it through a day without wee'ing in her pants once this month! I don't know how she is going to start school.

  15. #213

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    Hi all - yuck school! Why is it always the same cow poo I really thought this year was going to be different. I'm so sick of teachers looking at me like I'm an idiot and telling me my child is "doing fine" when he obviously is NOT and then 3 wks later requesting meetings and with all these problems arising. I'm sick of seeing him try and interact with the other kids and fail and getting into trouble when he doesn't understand what wrong I wish he didn't like going so much and then I would have an excuse to homeschool. Do you really think he is enjoying it.... I don't know whay he would say he likes it if he doesn't. But if he likes it why are we on such a serious sensory overload at the moment. We are building up to a HUGE meltdown and there is nothing I can do but keep dropping him off at school.

    Anyway there is my rant for the day...

    Christy how is Matilda going???

    Maz has Wihelm had a good first week back

    Leyza I know what you mean! I honestly think they believe they are trying to make us feel better by normalising the situation but that really just makes us feel worse. Have you checked out the aspect site - they have some really good ideas on toileting.

    Well I am off to bed ready to jump on the merry-go round again tomorrow morning

  16. #214

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    oh Sarah... its so hard. I will go and pick up that book now from the teacher & post it off. Matilda's teacher has said it will help her which is wonderful.

  17. #215
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    I'm a bit nervous posting in here, but i don't know where else to go for advice/support...

    I will pre-empt my post by saying my dad was dx with Aspergers as an adult and though i have never been dx i do have some sensory "quirks" which my parents regarded as part of my normal. Mainly i have a tactile and oral fascination. Even at 28 i still suck my thumb and have to fight with myself to keep from putting anything and everything in my mouth, a slap can feel as good to me as a tickle and i have always sought sensory experiences. As a child i was always the one who jumped in the pool fully clothed, "fell" (jumped) into rockpools at the beach etc. As an adult i still find my tactile desires to be overwhelming at times; i last swam in the ocean in January 2001 at the beach in Aberdeen. The sea was 4C and i was almost swept away (luckily i'm a strong swimmer) i just could NOT resist my swim (fully clothed, i begin to paddle and then cannot stop).

    Anyway i'm here today because of DD.

    Today was probably the worst i have seen her, though she's certainly had similar episodes before. We went to the adventure soft-play today to meet friends. When we arrived the son of my friend, who is the same age as DD, had just that second fallen from the slide, banging his face and bloodying his nose. I rushed to take my friend's DD, who is still a baby, from her, so she could hold her DS, who was in the arms of a staff-member but clearly wanting his mummy. We stayed close by our friends. Her DS was crying and screaming with pain and DD, who was in the meitai on my back, just had a total melt-down. It is always noise with her, and specifically both broad-spectrum noise (like the haridryer, hoover, blender) and loud shouts from others of anger or distress (laughter doesn't bother her). For the next 40minutes she clung to me (like i could have stood up and let go and she wouldn't have fallen, she was gripping me so hard) and screamed and sobbed and, and this is what scared me most, refusing to open her eyes. She kept telling me she couldn't when i asked her to. She kept her head tucked down against my boobs, wedged hard against me, eyes screwed shut, limbs wrapped around me, shaking with fear and screaming with distress. My top is still covered in snot and tearstains.

    After 40minutes (literally, and the injured kid was back playing within 10!) she calmed down and went to play, but then my friend's DS went to climb back to the slide, the staff had asked us, after the accident, to prevent him going up there alone, and his mum was getting lunch for her and her littlies. So i climbed up the frame to bring him down, he cried as he didn't want to come down, and DD melted down again. I had to have a staff member hold her while i brought him off and it took her another 20-25 minutes to calm down again, and even once calm she remained VERY fragile to noise from any other kid (which you can imagine in a soft-play area was fun!). I just held her really tight (at her sobbed request "tighter mama, huggle tight!") and shushed her and told her it was ok and tried to be normal with her without trying to persuade her to do anything she didn't want to (like i asked did she want to go play and respected her "no!").

    The worst bit was that there was a bunch of mums at the next table who remarked loudly firstly that if they had a kid "like that" they wouldn't bring it out and secondly that it was to be expected because i still baby-wear (she was in the meitai because it's often hard to get on the bus with a buggy) and have obviously made her the way she is by mollycoddling. I felt so demoralised by the time we left!

    I know this isn't anything compared to some of what your littlies go through, but i don't know where else to go to find understanding. She was so so terrified. It wasn't "fuss" - she was shaking like a leaf! The only things which seem to help are me holding her very tight, and me covering her ears. She still cries when i do those things, but it is crying it out, rather than screaming in rising distress, iykwim.

    Anyway i don't know what to "do" about it. Or if i should do anything. She is an excellent communicator, she seems to empathise well, she can generally be reasoned with and she doesn't tantrum often. She's just extremely sensitive to certain sounds. I very rarely raise my voice and when i do she doesn't react like that. It is worst with her wee friend's noises and cries, but she can get distressed by other kids at times too - sometimes she copes fine and other times she cannot deal at all. My parents dealt with my quirks by allowing me them when it was safe and watching me carefully if there was a risk. They just took spare clothes to the beach and only took me there on a receding tide basically. So should i just continue taking her sound aversion into account? Or should i do something about it (seek medical help? What, i mean i just have no idea!). She is fine with loud music.

    I'm worried mainly about how she will cope when i have #2. What if the cries of a sibling are a trigger?

    Thanks for reading this, i don't know if this is the place for us at all, but i'd really welcome your advice if you have any.

    Bx

  18. #216

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    Bx it does sound like she has some issues with sound or auditory processing. One thing is maybe take her to an OT? Occupation Therapists are the ones who deal with sensory issues, and ours is amazing, talking about how to cope in situations where you have to cope and teaching them how to calm the storm so it doesn't get so worked up. Some children do "outgrow" sensory issues, in fact most children do have some sensory issues. I think that is normal.

    I know that there are strategies in dealing with auditory processing issues. Our major issue is artificial noise, so in enclosed shops... or situations like that. We have noise reduction headphones for Matilda and have yet to venture out into shops. I took Matilda to a movie because she was desperate and put the headphones around her neck, for the first time we made it through a movie, and she pulled the headphones up a few times when things got too much and regulated it herself. It was fantastic to see her make it through a movie for the first time.

    Personally... as far as siblings go... it was hard at first. When Jovie cried or screamed, Matilda would lay on the floor with her eyes shut and her hands over her ears. I had to teach Matilda how to cope with the baby crying by putting on a CD I'd made to train the dogs and train her! I would play the cd and ask her what she wanted to do, I set up a "house" on the verandah so she had some escape away from the noise or stress. I also made sure she knew that Jovie was okay. She came with me to the LC appointment to find out what the best thing is to do for Jovie.

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