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  1. #41
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    Hi Ladies
    How are we all?
    MUMMY2SOPHIE Thank you for the info on the CSRIO diet. I will look into it and see how I go. I think the gym will be good me time and I can get my anger and frustration out. You need to look up a web site called magic words it gives you all the words to start children reading and it also gives the first 100 words and first 100 numbers. You can buy packs from them. Our school up here uses the golden words for prep and the rest for year 1 and up. It teachers you and Sophie the most seen words in books like at, it, I, me etc. I hope this will be of some help.
    I am so happy that friday is almost here. Tomorrow is a very big day. Looking forward to crying my heart out at the paeds office. I will have both kids there which will be a pain but he can see first hand what I put up with. I am just so excited that it has finally arrived.
    KYLIE yippie Craig is back... It gives you some help when you need it with the IEP. (teacher meeting). How did your morning tea go? did you meet some nice mothers.? It is strange how we all crave the chat with a mother who is in the same vote. I am lucky one of Peters best friends mothers is so nice and supportive she is good to talk too. She was telling me about her sisters little boy. He was DX autism when he was very little and lived his life as an autistic boy until he was 5 when he was found to have a strawberry birth mark on his brain. How is that for a fluke find! He still has problems and is aggressive but could you imagine thinking this and then having someone tell you other wise. He is now in high school and is still a handful.
    I guess this is why some paeds like to have scans done.
    Rosie good luck I hope you find a place soon.
    I could not imagine moving back in with my mother. We are fine apart but not living in the same house. We fight bad enough as it is. Glad to hear Epic starts next week for you. I can imagine what happened when you put gluten back into the diet. I need to re do Peters diet. I have started to re introduce the gluten free and low gluten and siliciates diet. What an expensive process this is. I don't know how we will survive.(money wise that is.) Take care.
    Sara hope you are all well at your place. It must be something about the age with Hannah and Emily. my Emily is a big pain in the bum. Has learnt some nasty things from the brother!!! Well ladies I best be off to get some sort of sleep. I hope you are all well and that you have a great day tomorrow. All of you have your fingers crossed Peter has put on the weight so we can get the right medication for him. (and my sanity!) Hugs to all. Letitia.

  2. #42
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    Default ***warning : Long post!!***

    Oh golly gee

    I had DS paed appt yesterday and things aren't looking promising ... DS was asleep in the pram when I took him (bless the darling it's the only time he's quiet!) but I had a report from the new daycare centre he goes to, asked a bunch of questions to me about how DS behaves, what upsets him, what makes him anxious, how is his diet/what does he eat etc. Then DS woke up so he was weighed, measured, ears checked (no blockages), and tapped on the knees/elbows with that mini hammer thing LOL He didn't like it AT ALL

    The problem is that DS is at an age where it's hard to DX because more likely than not it will change as he gets older (if DX with ASD later on it may be changed to Aspergers or something) but he did agree that it's "more than just ADHD". I have been given a questionnaire to fill out (the M-CHAT) and the paed has said that if he sees an indicator of possible ASD from that it will be sufficient for him to give an ASD DX, if only for the fact that it opens up avenues of assistance for us while ongoing assessment and possibly medication (when he gets to school, to help him with concentration)..

    My head is spinning and sometimes I feel like crying as the paed was quite clear in his opinion that DS is not 'normal' and that it was definately more than just an attention disorder. He agreed with the public paed we saw re. having bloods taken to check for chromosome abnormalities and he ALSO wants to have an EEG taken but highly doubts DS has the ability to lie still for it to be done, even with the EEG staff 'helping'.

    I'd like to share some of the report that the daycare centre drafted as this is what really drove it home for me:


    DS slept for approx 1.5hrs. He woke with a start and began to cry. His body went tense. He held his arms out rigid in front of his body and curled his fingers inwards in an open fist (in a shape similar to if he was holding a tennis ball). His eyes widened and he stared upwards. His mouth opened wide and he cried out as if he had a sudden pain or discomfort. His entire body shook with a slight but rapid intensity. He continued to cry out during this shaking episode. He then relaxed into the cushion and appeared quite tired. He repeated this behaviour approx 6 times with approx 1 min between each episode. After this behaviour had settled I encouraged DS to sit up. He readily did this and I changed his pull up pants for him. He again began to cry out and stood very stiffly as I changed his pull up pants. He then walked with me to the playdough table. He sat at the table and picked up a long piece of dough "snake broken" he said. I showed him how to place the 2 pieces of dough back together and re-roll the 'snake'. As I did this he began to display the same crying out and stiff hands/arms as earlier. He fell to one side and seemed unable to hold himself in the chair. I held his stiff body until the screaming and shaking stopped. He then sat upright again and began to continue playing with the dough. He seemed unaware of the episode that just occured and he did not display these behaviours again for the remainder of the day. He woke then next day with no incident. The following day he woke with crying and calling out but no signs of shaking or stiffness.

    DS needs to be encouraged to give eye contact to adults or children. He needs to be physically and visually guided to do this. I held my hands under his chin and turned his head to face me when I was talking to him, especially when giving instructions. When I used basic signing to show him what I needed from him he was able to follow this instruction quite well. He is unable to follow instructions with more than 1 step. I used my hands to point to objects and drew an imaginary line with my finger from his eye to the object I needed him to look at. For example when asking him to pick up a car from the table I asked him first just verbally. He did not respond to this instruction. When I guided his chin to turn his face to look at me and used my finger to point from his eye to the car he followed my finger with his eye to the car and then picked up the car.

    DS does not seek the company of other children or adults. He resists all attempts at interaction when children initiate interaction with him. He pushes children away, screams and says 'get out, get out'. On his first attendance day at the centre he bit several children, pulled another child's hair and pushed many children. When the staff tried to guide his behaviour into more appropriate behaviour he did not respond and continued with the inappropriate behaviour. I then asked DS to hold his arms beside his body and guided him to do this. Whilst his arms were beside his body I gave him verbal prompts on appropriate ways of dealing with the other children. I also spoke to the other children about assisting DS in expressing himself more appropriately. This direct instruction to keep his hands beside his body worked well and his behaviour with the other children became more appropriate and manageable. He responded well to direct praise and specific descriptions of what it is that he had done well. For example, I praised him for standing still with his hands beside his body and not hurting the other children. ' Well done DS, you are holding your hands beside your body away from the children. That's great. That's just what I need you to do. Do you see how the other children are smiling at you? See their lips are moving upwards and they are not hurting you? They are happy.' He looked at the children but did not give eye contact or enagage with them, and continued to stand where he was, allowing the children to remain. He did not engage with the children or attempt to make eye contact but he no longer tried to push them away or hurt them. This method worked well and he was able to easily follow this instruction at other times of the day.

    DS showed a keen interest in the turtle and the fish and he appeared much calmer when looking at them. I encouraged him to remain on task whilst looking at the fish. He saw that there were pictures of fish on the wall near the tank. 'Fishes' he said. He took one of the pictures off the wall and I allowed him to carry this with him to other areas of the room. His behaviour was calmer and less erratic than previous. DS has difficulty focusing on task without adult guidance. He will move throughout the room from one experience to the other, without actively engaging in any of the experiences. Once encouraged to remain on task with 1 to 1 guidance from an adult he will remain at that task for an appropriate amount of time. He especially responded to calming experiences such as plasticine and dough. He enjoyed using the mallets and rollers to pound the dough. When shown how, he used the dough to roll 'snakes'. He remained on task at the playdough table for approx 40mins with 1 on 1 interaction from the staff. He did not engage with the other children during this time but he did occasionally initiate interaction with the staff, when he required help. He participates in painting experiences, again needing assistance from the staff to keep him focussed on tasks and to use equipment appropriately. DS does not engage productively with toys or equipment- he needs constant guideance and reminders of the appropriate use of equipment. He tends to pull things off shelves or tables and throw them on the floor. However with guidance can use equipment appropriately.

    DS displays a fascination for stickytape. He seeks the stickytape dispensers and continues to pull long lines of tape off the roll but does not use the stickytape for a purpose beyond the pulling motion. I sat with DS and showed him how to pull the stickytape off the roll correctly. Although he was not able to manage this task he did attempt to do this several times. I helped him choose some collage construction items. He chose a colorful tissue box (bright pink with orange flowers). DS was able to place the stickytape onto the box. I assisted him to tear the tape from the dispenser and he placed the stickytape onto the box until it was covered in stickytape. He tended to scrunch the tape into big balls and then stick them onto the box. He showed good focus and attention to task. When another child approached the table DS immediately lashed out at the child. I used the technique described earlier and DS placed his hands by his side. I then spoke to him about shared space at kindy. I then gave another tissue box and tape dispenser to the other child. DS did not engage or acknowledge the other child but did allow him to share the table space without further incident.

    He is able to feed himself using utensils and drink from a cup. Resistant to some foods - prefers soft foods eg. yoghurt, mashed potato.

    DS is not toilet trained and shows no awareness of toileting. He is not displaying any signs of toileting readiness.

    DS seems to have heightened sensory awareness. He reacts to bright lights by squinting and turning his face away. He kept brushing his hands over his hair when the feel of the wind from the ceiling fan moved his hair. He displayed clear signs of irritability at this. He settled for sleep much more readily with a sheet covering his body. He resists physical touch such as stroking or rubbing, but does not pull away when hugged by a familiar adult.

    DS uses minimal language and engages in echolalia. He will repeat language that is spoken to him and is able to form those words and sounds which are clear and easy to understand. The minimal use of direct initiated language is very difficult to understand. He mumbles his words, shouts, speaks very fast and looks away when speaking.

    DS has difficulty in completing tasks. He needed guidance to do this. For example when painting he would throw the brushes on the floor rather than place them back into the paint pots. The staff brought him back on task and showed him how to use the brushes appropriately. They then assisted DS to hang his painting on the drying rack. DS resisted these attempts by staff to assist him to remain focussed and complete the task. However, he was able to complete these tasks- he had the fine and gross motor skills to do this. With one step instructions he was able to comprehend the tasks being asked of him.

    Although DS tends to flit from one task to another he tends to remain in one radius area of the first point he arrives at. For example, DS arrived during outside time and Mum brought him to the staff member near the sandpit. DS moved from the sandpit, bike track and cricket set which were all within a 6m radius. He made no attempt to seek equipment or explore space outside of this immediate area. Indoors he remains in the one room and did not attempt to explore further although this option is readily available. When moving around equipment or space, he will barge past children, pushing them out of his way rather than going around them. He tends to focus on whatever he is seeking, rather than what is happening immediately around him.

    DS responds positively to music/singing. He will resist joining in at group times but will watch the children from a distance. He responded well to sitting on a chair slightly away from the group- he became very distressed, screaming and shouting when staff tried to encourage him to sit on the mat with the other children. He readily sat on the chair and sat through one story and several songs. He needed constant adult attention to remain on the chair but did show an interest in the story when the staff read this to the group.


    I'm express posting the M-CHAT test to the paed so that we can get the ball rolling - from the Google searching that I've done on scoring the test he 'fails' the test spectacularly

  3. #43
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    I'm sorry to say but that certainly sounds like ASD to me. Your paed is right. Having a diagnosis means you have access to more help and funding.

    You knew there was something more to it though....after all you've been posting on this thread for a while now....perhaps deep down you knew? That makes you a very clever mom and instinctively realistic.

    I know getting a dx is a real shock and at first there's nothing more to do that grieve and cry. Once that stage is over (and it will get better...trust me!) you'll be ready to start thinking about treatment.

    When you're ready start to explore treatment. There's a lot of it out there, so it's difficult to choose. Feel free to ask any of us about what we do and how effective it is. And vent of course. We all need to vent

    The daycare staff are really trying to help him which is lovely You're lucky to have this kind of help around.
    try to stay positive okay. He's a darling boy that just needs some help. This is an intimidating label, but with the right help he can really come a long way.

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    Hi all.
    Don't have time for personals, as it is getting late, but have been doing a bit of youtube surfing tonight (while the kids watched inane telly) and found this Uni of California tv episode I thought you might all want to see. I have only watched the first 10 mins or so, but so far it is unreal.
    The lady speaking is a professor with duel degrees and has autism, it is a bit scattered to folow (but hey we are used to trying to follow our kids thoughts, right!), but what I have watched so far was so interesting I thought you might all want to have a look.
    Warning...it is an hour and 20 mins...hence the reason I haven't watched it all yet.

    Now I really hope this link works, cause I am useless at the techno stuff.
    http://www.youtube.com/watch?v=2wt1IY3ffoU

    If it doesn't, it is called my experience with autism. I just searched autism on youtube and it was one that came up.
    Have a great weekend all.

  5. #45
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    Hi, Just wanted to introduce my self. I'm Kylie and my beautiful 4 year old daughter Jasmin has recently been diagnosed with Autism. I really don't know where to start with treatments/therapies etc. She has been refferred to Autism SA but they don't seem to be doing much to help. I guess they have sooo many children to help. Just wondering if any of you have any advice on where to start? Thanks, Kylie

  6. #46
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    Boy oh boy oh golly gee. *falls flat on the floor*.

    Serves me right for being away for a few days, I can't bloody keep up! LOl.

    to all of you who need hugs. I hope the morning tea went well, Kylie. Letitia I really hope your week ended better!!!!!!!!!!!!!!!!! How did it go with the paed???????? I ahve my fingers crossed (belatedly) I'm soo sorry I missed your earlier post and you were having such a tough time. I am thinking about you!!

    Rosie I hope you are also having a better day- as you know I don't really know about Epic so I dont' ahve much advice re the play group and stuff but I would just rings and ask- can't hurt!

    Scrapmad.... wow. I agree with Sarah. it does sound like ASD- exactly like it, unfortuantely. I just don't know what else it could be. But having a dx IS the start of getting him help- crossed fingers you both get the help you need soom. kylierenee, WELCOME, come here anytimes, join us crazy women lol, I don't know much about SA but could you try the autism advisor service for a start to see if they can help??????????? Look on the Aspect web site.

    Sarah, that's great Sophie is going so well- I want to teach Alex to read too, will look up that site Letitia suggested. let me know how you go!!

    I think my little man is also very smart. You know he can now use the computer completely independently? He looks up games and opens, closes, navigates them profficiently... uses the mouse great, clicks, drags, very rarely needs help and asks when he does. Is that normal for a just 3 year old?????????? I don't think so, but maybe....... tell me if it is! I'm hoping that he will grow up to be a computer wiz, lol/ At leats he should be well paid!!

    I am off to bed, was getting an early night before all those posts set me back a while! Off to help my girlfriend with weddign dress shopping tommorrow and off to the zoo on Sunday!! Really hoping Alex will like it.

    Have a great weekend guys, thinking of all of youxxxxxxx

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    well we saw genetics this morining. naomi has been dx with a rare genetic deletion causing a rare genetic neurometabolic disease called GLUT1 deficiency syndrome. it is a disease affecting primarily the brain. we will know more on tuesday when we see neurology. please pray for her. at this stage she is only having some issues to do with it so we pray that it stays mild-moderate and never gets worse! now we can move ahead to treating it. i feel very alone right now. oh and yes, by the way she still has ASD.

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    Hi Ladies.
    First of all Welcome to KYLIERENEE feel free to vent here any time (I know i do!) It feels good to know there are others out there dealing with issues similar to you. Have you googled autism help SA. A web site you will find full of info is www.autismhelp.info.com.au It is a great site with lots of info. Click on all the blue or purple coloured writing to bring up more info. I hope this helps.
    SCRAPMADMUM2K Sounds to me like ASD too. You have a lot on your plate and will love the extra funding you get and also the extra help. There are agencies in Brisbane that do respite care and can care for your DS when you need the too. Like if you need to get your shopping done. They care for them in your own home and charge a small fee. Look in to it I think it may help you out. The new centre is very good doing such a indepth letter for the paed. It is in great detail, but it also shows they care about him too. The sound like they are trying to help he out with every thing. They seem very helpful and are mindful of what he needs. Hope things get better soon.
    MUMMY2SOPHIE Glad things are looking up for you at the moment. Sophie really sounds like she is getting better with the treatment. Keep up the good work and Take care.
    SARA Don't worry too much about being away. I am ok and everything was fine at the paeds office. Paed put up the dose of medication to help Peters anxiety. I dont know if it is going to help with the aggression but it is worth a try. We give him 2 tablets at night now for a week and if no improvements go to 1 at night and 1 in the morning. if this does not work after 2 weeks he will change it for him. I hope it works because it will take 6-8 weeks for the new tablet to take effect if changed. It is such a long time between working sort of to working fully. I need to get the teachers to take notes on behavour and when things are getting to be a problem. I also need to do a daily diary of behavour and triggers. Not looking forward to it as also need to get IEP papers done by the end of this week end. Anyway very tired off to bed. By the way not as upset as I have been. Take care all. Letitia.

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    Sorry Nic ( Naomis mum) I forgot to put in my post for you. Glad to see you are getting the answers you need. Will be very interested to hear how tuesday goes. Have they let you know anything about the treatments yet? I hope it is not too painful physically or mentally for you and for Naomi. Take care and look forward to your next post. Letitia.. Keep your chin up.

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    Hey Letitia you see an improvement with the increase, I really hope so for both your sakes. I am glad you are feeling a bit better.

    Nic, It must be so much for you to take in, you poor love. Definately have your little girl and you and your family in my thoughts, you will get there.

    Off to the zoo tommorrow Can't wait!!!!!!!!!!!!!!!!


 

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