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thread: Aspergers/Autism/Sensory Integration Chatter #4

  1. #289
    Registered User

    Jan 2008
    Just Coasting
    1,794

    Hi, this thread has been quiet!

    Just thought I'd pop in for a quick update. We are finally getting the diagnosis process underway.

    We had some questionnaires sent out to us from CDABS (child development and behavioural service) for me to fill in and also one for daycare to fill in. In the form I completed it definately showed that DD has sensory issues. Some of the questions just described her so much! DH has been burying his head in the sand with the whole issue saying I'm over-reacting and that DD is just a normal 3y.o. So I think he got a bit of a shock when he saw what DD's daycare teachers had said in their questionnaire. I think he now realises it's not just "me" and that getting DD assessed asap is only going to benefit her (and all of us for that matter). I'm so relieved, i was really struggling with having to persue this on my own IYKWIM.

    So anyway, we had to send the completed questionnaires plus a referal from a GP back to CDABS and apparently it's about a 4 month wait to see this specific paed and OT who specialise in assessing children who are suspected of being on the spectrum.

    I will keep you posted on how it goes.

    In the meantime, we're just plodding on.


    PS: anyone else have any issues with the change in ABC2's new logo. They bought out a new one this week and DD was very upset. She wanted the old logo back.

    PPS: CDABS is a QLD Health Service on Gold Coast. ANyone who is interrested here is some info http://www.health.qld.gov.au/goldcoa...vices/CDBS.asp

  2. #290
    BellyBelly Member

    Oct 2004
    Cairns QLD
    5,471

    eta - holy crap! mammoth post ahead! sorry!

    Hey mamma spice, thats great to hear that your DH got a bit of a wake up call! I know what its like to have a partner who doesn't seem to see the real issues.

    I have been plodding along best I can with no support still. DH is coming around & accepting that our lives will be ones filled with the issues of having a child(ren) with an ASD. He brought home a book the other day called "Freedom from Meltdowns" - Dr thompsons solutions for children with Autism. He said he seen it & thought of me, as I call it a meltdown (over tantrum) when Evan has his well Meltdowns. Im only 1 chapter in. Im not a big reader & find it hard to absorb what I read. I often will be reading the words while thinking about something else. Anyway, DH asked me what I thought of it so far. All I could reply with is yet again, just more enforcement that all these years I was right with Evan & no one believed me, acknowledge that I may in fact be right. The way it describes what a meltdown is & how it plays out etc is EXACTLY what happens with Evan. So I will keep reading. With any luck it will have some helpful tip for me on how to deal with them.

    I also had the special ed teacher approach me today at school during the sports carnival. Just asking if I was Evans Mum & if I had any follow up on the paper work they are waiting for from me (eye & hearing tests & pead report). I took the chance to tell her (I tell anyone who will listen!) my thoughts on Evan & how things are currently going. Which unfortunately things are down hill very fast atm. He complains that kids tease him, the whole school is bullies, doesn;t like/want to go to the school. Wants me to talk to his teacher (which I have, will touch on that in a sec) & has started "faking" being sick to get out of going to school.
    When I spoke to his teacher though, He said he has not seen anything like that going on for Evan. But he did acknowledge that these are Evans feelings so if thats how he is feeling then that is how it must be for him. Im yet to make up my mind on this new teacher. He is just that a new fresh off the ranks teacher. I think he said he did his prac last year. So I am a little concerned about how much experience he could possibly have with dealing with a child like Evan. BUT on the other hand, he is new, fresh with enthusiasm & idea's KWIM.
    He also told me that Evan does have friends. At least 2. Also that 1 of these boys is being picked on a bit. *PING* lightbulb moment! That is wheer the teasing/bully concerns would be stemming from. Evan was like this at the old school also. He sees things happening to others (was the only friend he seemed to have there) & he takes it all in as his own. Im not sure how to explain it. But Obviously he is seeing his mate being ppicked on (he says they don't tease him, just try & fight him) & even though its not directly happening to him (that we know of) he is still effected the same as if it was.
    I also met one of his friends today & gave him our phone number to pass on to his Mum & to let her know we would love for him to come over & play & Evan would love to play at his place too. So hopefully we get a call at some point!

    Glenn... ah glenn, my poor little man. He seems so depressed lately. His teacher actually called me yesterday to ask if I was coming to the sports day as Glenn was rather reluctant about doing it & she hoped I would be able to make it to cheer him on. Of course I was going! New baby or not LOL. So today I spent the day out on the sports oval encouraging both boys to give it ago. Glenn is actually quite good at long jump . His teacher also told me that the school counsellor has been coming in & making observations on Glenn but he has been good each time she is there. BUT she asked her to come back early in the day as that is when he is at his worst. I like that even though the counsellor isn't seeing it. His teacher is on my side & is really pushing to get others (the help) to see he does in fact need help.

    Now onto Iain... I had my SIL around the other day & she said rather bluntly that she thinks Glenn is our main concern. He is the one who will be the "worst" with what ever ASD "placement" he gets. I kinda agree. He shows more of the things that are concerning. No empathy, thought for others etc. She then went on to say that she believes Iain is also going to have an ASD. Now trust me the thought has already entered my mid a few times. I see things in him that make go "Oh no!"
    I am paranoid that all 4 of my boys will have an ASD. But to have her so bluntly put it to me has shaken me a little. I can't stop thinking about it. I know the "wait & see" approach is bad. But What would I say to the pead?
    At the moment he is really pushing things. BUT keep in mind he is 2 & half & I have just had a new baby.
    But he is
    Screaming more ( in frustration)
    Biting/hitting/pinching when he is frustrated with (mostly Isla) someone or even just something but if someone is close by then he attacks them.
    He has gone backwards in his speech a bit (this is a red flag for me). He knows the words but for example has gone back to calling all forms of drinks "milk". He was asking for water for water, milk for milk & even Coke (which he wouldn't get) if he seen me with the bottle. But now its all milk. Other words are also harder to understand then they were just a few weeks ago.
    He has become more hmm clingy isn't the right word but freaked out if anyone other then me & DH touch/help even talk to him. Depends on his mood but like the other day we went to kinda gym. He is always a little stand offish with new people/situations. Will turn to me if someone new speaks to him. Will look to me & say Muuuummmmm. Looking for reassurance I guess. so anyway the other day we were there & it was only our 2nd visit but the teacher said she realises he doesn't want "help" & will let him warm up in his own time. He was on the trampoline & was getting down. He was just a little off to where the step was so she moved it so it was under his feet. Didn't touch him, just said there you go. He freaked out, shuffled back on tot he tramp & "ran" tot he middle screaching & threw himself down in the middle screaming NO NO NO.
    I notice him tippy toeing more.
    He has attached himself to sheets. He had one there for about a week (its int eh wash now but he happily took the other one with space ships on it!) that he took to bed, brought out with him in the morning, used as a table cloth at his little table, would bring into my bed if he came in etc.
    He freaks out if something is different. Changed his pillow case, lost it because it wasn't his pillow anymore.
    If someone sits in his red chair he freaks out & attacks them.
    He is going around with his shirt collar in his mouth all the time (only started this in the last few days)
    Has always like things on his head/face. So if something vibrates, he likes to run it over his head for example.
    he ahs been particularly naughty/cheeky. Will throw something (toy/cup etc) & look to see if I am watching with a big grin on his face.
    He has also started to display the same behavior as Evan (monkey see monkey do I think in this case) where if he doesn't like something or gets into trouble for something he will throw things around & keeps doing it while watching me for a reaction until I take him to his room to sit on his bed.

    There are more little things also BUT how much of this is normal 2 yr old behaviour? How much of this is normal 2 yr old with new sibling behaviour?

    I don't know because to me with my experience so far it is NORMAL. But is it? Should I stop being paranoid & be concerned & get him assessed now? Or wait & see if it is just the new baby/changes?

    On the paranoid boat, anything I should look for in my NB son? Maybe I can get a bulk discount when I go to the pead next LOL

    eta - teh special ed teacher said the school can organise a referral to get an OT to come to the school for Evan.

  3. #291
    Registered User

    Oct 2003
    Forestville NSW
    8,944

    WOW.

    So much going on.

    Mama Spice - Sounds like things are moving along, which is awesome.... Its hard to process everything but thankfully it sounds as if you have things on your side. If your DD has sensory issues, I would highly suggest getting to the OT ASAP. It has changed our lives and our DD has severe Sensory Processing Disorder, or Sensory Integration Disorder.

    FJ- Wow. That is so much to process.
    * Remember all children on the spectrum are different. All kids go through some sensory processing issues at some point (chewing and mouthing and texture seeking). So although Iain is definately showing signs, it may also be a reaction to Rohan's coming into the family. He is seeking oral factory stuff by mouthing shirts and sheets etc etc... a huge thing when they do that is to give them oral seeking things. A teething ring with bumps on it, heaps of crunchy food... a crunchy diet for a day or two, an electric toothbrush and a timer, and last but not least get one of those finger brushes for cats, and rub his insides of his cheeks with it three times a day. These are our exercises... Matilda chews hair, and sucks her thumb, she chews everything... so our OT gave us these suggestions, and they definately reduce the mouthing on everything.

    You know what? I'm so amazed by you. You have done so much on your own, instinctually for your family. I reckon living with your DH has helped you as well. But you are doing what I did when I first started our journey. I was reading books and saying "YES!!!! See??? I was right!"

    A very good book is "The Out of Sync Child" its like the handbook to Sensory issues. 80% of children on the spectrum have sensory issues. BUT not all kids with sensory issues are on the spectrum. I reckon its worth getting a copy. It will help.


    Us... well, we are moving this week. Joy. Amazingly, amazingly we have not had a meltdown yet. I did so much preparation with her. We drew diagrams of the house, we drove past it, looked at photos from the internet... The day before we moved in, we got the keys so Matilda and I went to the house and walked through, pointing out the toilet, her room, she then drew me a picture of where she wanted things to go. When she got home from school her room was the only one unpacked and set up exactly as she wanted it. She went in and started drawing pictures and did it for an hour. She's had issues with sleep again, but if that is all we are dealing with than I'm amazed. Our last move, she was okay for the first week and then started jumping out windows and running... so I will desperately try to avoid that...

  4. #292
    Registered User

    Jun 2005
    USA
    3,991

    Gosh, suddenly lots going on this thread! We have had a huge week here too.

    Mamaspice- I'm so glad things are moving along for you. We're at that "cusp of getting an evaluation" stage too and it's hard not to get all toey and impatient. It feels like we're so close now.

    Efjay- Wow. I don't know how you're doing it. I've been having some major meltdowns and not coping with looking after 2 children. Your little Rohan is still so little. I take my hat off to you! I don't really have a whole lot of information and help for you sorry. With regards to wait and see or start evaluations- I would err on the side of starting testing for Iain. It can't hurt. If he settles down once the dust settles from your move and new baby then great, if not then at least you will be on your way with the support. I wish so much I hadn't taken a wait and see approach for as long as I did with E.

    As for Rohan, I've been wondering about how to best support my little F and get him the best start. I went on a GFCF diet for a week and was a complete mess. So I decided to go minimal gluten and dairy and ease into it instead. I just don't have the time to be making everything from scratch all the time so I need to stock the freezer up with meals first. And I need to wean off the gluten- cold turkey messes with your mind. We are also eliminating toxins from the home. We already use enviro cleaners etc but I gave E BPA sippy cups etc and this time we're going with klean kanteens and I'm turfing all the plastic in the kitchen. Going glass instead. I'll also start F on a GFCF diet for perhaps the first year and then decide (once we've learnt more from E) whether to start introducing them.

    I'm going to a talk by Dr Bob Sears in a week and he will be talking about giving future children the best start (and the biomedical approach to autism). It's kinda tin-foil-hat stuff but if you're interested he has a book "The Autism Book" and there is similar information on the TACAnow website.

    We've decided to take E to a DAN (defeat autism now) doctor. She is a natropath and should be able to help us answer questions about E's health. We want to test food intolerance & heavy metals and look into supplements for his poor diet. Then perhaps consider some gentle chelation methods if he has high levels of toxins. Chelation has some strong opposition so we're wary of that.

    E had a hearing test today and passed easily. He is going to speech once a week and it's going really well. We have him on waiting list for OT. We have to get him assessed by the school system here and get him into a developmental preschool. Found out he needed all sorts of medical records for that so we had a 3 year old check at the pediatrician and he has noted all his delays. Hopefully he'll get his assessment soon. We're about 2 months out on the waiting list for an appointment for evaluation & diagnosis, but they've put us on the cancellation list so hoping to get in sooner.

    Well done on the move Christy! Sounds like you did an awesome job. I hope M continues to settle in well!

  5. #293
    BellyBelly Member
    Add Yeddi on Facebook

    Aug 2010
    In a library somewhere...
    788

    Wow ladies - a full on week. I thought I might share some info. We've done this program and seen HUGE improvements. It's not mainstream but the further I dig, the more spot on think she is...

    Vid 1 - YouTube - Dr Natasha Campbell-McBride-The importance of healthy gut flora.
    Vid 2 - YouTube - Dr Campbell-McBride/Many diseases born in the digestive tract.
    Vid 3 - YouTube - Dr Campbell-McBride/What can damage our gut flora?
    Vid 4 - http://www.youtube.com/watch?v=UcavC..._order&list=UL

  6. #294
    Registered User

    Jun 2005
    USA
    3,991

    Thanks Yeddi! That's the sort of stuff our ND does too. The more I read about all this gut health- mental health relationship I really think there is something in it too. My instincts just feel it's a path we have to explore. I've only watched the first clip so far- interestingly I BF E till he was 2 and he was developing well until then. I had wondered about a link there and she explained it really well. E went into decline from his 2nd birthday. We didn't get a speech assessment till he was 2 years 9 months because we kept wondering if it was a just a little set back given how well he had been going up until 2. He continued to get worse and worse that year though. He has been on a GFCF diet for about 2 months now and his language and behaviour keeps improving all the time.

  7. #295
    BellyBelly Member

    Oct 2004
    Cairns QLD
    5,471

    Its quite in here....

    Just a little vent to let it out... Evan is having meltdowns almost daily. It seems like he is constantly in a state of "egg shells". What I like to call it when you can see the meltdown is coming & its just a matter of trying hard to avoid triggering it. But I have no idea what it is triggering it. Its everything. Yesterday we went to the park, at his request. Get there & he was moody because the park was "boring". So we went to another park that we hadn't been to properly before. It was a nice reserve type park. Lots of trees, a creek etc. Again he stomped around complaining how the trees had green ants on them or spiders etc. Just everything he was in a foul mood about. Eventually later at home he had his meltdown which was triggered when I took a FULL glass of soft drink off him. Dh had bought some creaming soda as a treat & Evan poured all the kids a cup. But gave himself a adult size glass & filled it to the brim. So I took it from him & drank half & gave it back. He flipped out & tipped the rest down the sink & spent the next 40 min throwing things around because I drank ALL of his drink & he didn't get any. When I tried to tell DH (who was in teh bath) what happened Evan changed his story to I drank half & then I tipped the rest out.
    He eventually settled down though.

    I don't know what to do or who to ask for help from. The school is slow, the pead's office stuffed up & was waiting to hear from the school before sending anything BUT the school has been waiting on stuff from the pead. I feel like we are somewhat prisoners, locked in by his constant threat of a meltdown. We use to see a counsellor in NSW through the community health services. But I can't find any information on anything like that available here.

    To top it off Iain is copying Evans behaviour now too Isla is being a handful, demanding (attention, who can blame here really) & just being a brat. Poor Glenn is just sinking into the background & Rohan is becoming a colicy, needs to be held constantly baby.

  8. #296
    BellyBelly Member
    Add Yeddi on Facebook

    Aug 2010
    In a library somewhere...
    788

    Rohan was put on antibiotics wasn't he? Have you been taking a probiotic to counterbalance that? It should help.

  9. #297
    BellyBelly Member

    Oct 2004
    Cairns QLD
    5,471

    Rohan was put on antibiotics wasn't he? Have you been taking a probiotic to counterbalance that? It should help.
    They were IV antibiotics not oral. Would that make any difference? I didn't even think that it may be that...

  10. #298
    BellyBelly Member

    Oct 2004
    Cairns QLD
    5,471

    Thats odd, before I didn't see any replies to post a few days ago & now they are there.

    I don't feel amazing thats for sure. I feel stretched beyond limits & at a loss as to how to make things better.

  11. #299
    Registered User

    Oct 2003
    Forestville NSW
    8,944

    It does make a difference, the IV ab's still affect gut flora. I can't remember why.... but I know they can. Just like if we have ab's iv and still get the stomach side effects. I would try the probiotics, they worked wonders for me when JJ had heaps of refluxy type issues when I had massive amounts of ab's due to an infection when she was 5 weeks...

  12. #300
    BellyBelly Member

    Oct 2004
    Cairns QLD
    5,471

    THANKS FOR THAT, I WILL PICK SOME up this afternoon

  13. #301
    Registered User

    Jul 2008
    Balnarring, Vic
    1,900

    Hi everyone,

    I've been meaning to post for days, feel as though I don't even know where to start. I'm feeling so overwhelmed and stressed. Both kids got sick a couple of weeks ago and they still have coughs, it's just been down hill from there. Ds isn't very unwell anymore but he's basically had one giant meltdown all this past week. It's too much for me to even begin to work out how to help him or calm him. He won't wear shoes and socks, he'll only wear one outfit, he won't eat, he's water is too cold.. It's just everything and he won't let meout of his sight long enough to even eat. Even if I do try, he'll do something destructive or hit dd while I'm not looking. He's up most of the night.

    I'm still waiting on our report and can't fill out the early intervention stuff until we have it. On a plus, I did get on the waiting list for speech and ot through community health so it will be free. Just not sure of how long it will take.

    I'm sorry to just come in here and vomit this out on you all, I just don't know what to do anymore and am feeling lost and miserable.

    On my phone so can't read back right now but wanted to say I've been thinking of you effjay. And christy, I glad the move has been ok so far. Fx it stays that way.

    Zx


    Sent from my iPhone using Tapatalk so forgive spelling mistakes

  14. #302
    BellyBelly Member

    Oct 2004
    Cairns QLD
    5,471

    I just wanted to share.. I have joined a closed group on FB called Aspergers Connect. OMG the women on there are so helpful. I would highly recommend you all join up. Its not just aspergers on there either.

  15. #303
    Registered User

    Jul 2008
    Balnarring, Vic
    1,900

    Will look it up when I'm on pc effjay.

    Yikes, it's been quiet in here, hope you're all doing ok.

    First ot appointment/assessment on Friday. Finally. I'm looking forward to finally getting some advice and help.

    Things are still quite hard here. Sam was totally better by the weekend but then got some tummy bug and was vomiting Sunday and Monday. He's still out of sorts but at least not so sick now.


    Sent from my iPhone using Tapatalk so forgive spelling mistakes

  16. #304
    Registered User

    Oct 2003
    Forestville NSW
    8,944

    I'm here, just not coping too well atm with everything around me. I'm going down to Melbourne on Sat night for Lulu's memorial on Sunday. Its been tough, supporting the planning of it and going through stuff again. I miss her

    M is going very well at the moment, more so than I thought she was... she's had a few things changed on her in the past week with minimal meltdowns which is awesome. I am worried however that she is going to not go so well today... just a feeling I've got...

  17. #305
    BellyBelly Member

    Oct 2004
    Cairns QLD
    5,471

    Hugs Christy. I have been missing Lulu lately also. Really feel like she could have helped me a lot of late.

  18. #306
    Registered User
    Add ~clover~ on Facebook

    Sep 2007
    travelling
    9,557

    Hi guys. I've been offline for a while. In the past few weeks the ball has started rolling though.

    Bri had her OT assessment done 2 weeks ago. I go in on Monday for the findings of the assessment & what she thinks will be helpful. After the appointment she said there were no signs she could see of aspergers (I suggested it after reading a few things & just thought some of it might fit, expecting it to be wrong anyway). But she said that Bri has a lot of sensory issues going on, definite ADD & possible ADHD.

    She referred us to the mental health unit for helping us deal with all the kids & also redflagged Jesse (DS - 3) for early childhood intervention, just from seeing him while we were in the waiting room.

    We had an optometrist appointment, to get the visual processing assessment done. She was prescribed glasses for longsightedness (just temporary to help her process things that little bit quicker) & when she has them we'll have the assessment.

    Her Auditory assessment is on Thursday next week.

    I've spoken to the MCHN since & she's told me about the Enhanced Primary care program we could be put on, so we don't have to pay for Bri's assessments & gave us more info on early childhood intervention. (My MCHN is a LEGEND!!) She's also referred us to the Brighter Futures program through DoCS which is also to help us learn to deal with the issues we have every day.

    Sorry I have no idea whats happening, but I will catch up when I have the time. House inspection this arvo & trying to keep up with the kids til then is just loads of fun.

    I'm a mixed bag of emotions when it comes to all this. Relief & guilt at the same time. Glad I'm onto all this now though & can get the kids help early on

    Promise I'll come back to see how things are with everyone.

    ETA - my DH thinks its all a load of bull too. But he's not here, so I don't care. He's not dealing with Jesse's tantrum after tantrum all day long.

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