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    All About Autism

    Scheduled Pinned Locked Moved Special Needs & Learning Difficulties
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    • S Offline
      schweppes
      last edited by

      ImMeeMee:
      it is one of those bad days. she seems to go back to her spinning of objects and being obsessed with light and sound.


      a bout of diarrhoea and fever seem to have brought the efforts that we have put in and the joy that we have gathered this while to a zip.

      I'm not a medical practitioner, just wondering, was your dd on antibiotics? Could it have caused her to revert to \"old\" ways?

      In the early years, I observed that dd would have mood swings and meltdowns whenever she was on antibiotics. I'm not sure if this is the case with every child, but it was what I noticed in my own kid.

      It got better when she was older. So, if she has to take antibiotics, I try to get her to drink as much water after that - to flush it out of the system. I also get her to take probiotics (you can try Culturelle or Threelac) to help the good bacteria to grow in her gut. Found that this helped to balance the intestinal system for my child.

      ImMeeMee:
      this has been my greatest fear and it is happening now. somehow i have been expecting that one day it would happen. its just natural progression that she may go through this before the next quantum leap. just that when it happens it is such an emotional rollercoaster ride for me.

      I feel great sadness in me, seeing that she is trapped in her world and that I am not able to reach out to her to help her.

      such is the sense of loss that I become trapped in kubler's grief again.
      I can understand that you are very disheartened and discouraged now. It is an emotional roller coaster ride. There will be days when they child will regress BUT after going through this difficult spell, the child WILL leapfrog and progress.

      You would think the child has progressed and there is this glimmer of hope, and then suddenly you feel as if you have fallen into the dark hole again. But somehow, before you know it, the child seems to have improved and moved forward again.

      It's really an up and down journey. And it's emotionally exhausting and physically tiring. I know it is easier said than done, but do hang in there and don't give up. Our kids need us to stay strong to help them get better.

      :hugs:

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      • I Offline
        ImMeeMee
        last edited by

        Dear Blobbi, Sun_2010 and schweppes, thanks for the encouragement. I do believe that the child will get better after hitting the bottom, just that it is difficult to cope with the emotional distress as a parent at that particular point. It is painful to see your child trapped and feel helpless about it.


        schweppes, I have not put her on antibiotics. in fact, we are scratching our heads as to why she was having diarrhoea, as her diet was not out of ordinary for the last few days. Our only speculation is that she may have contaminated something while putting things into her mouth which she sometimes does.

        one question. how do you manage your kids’ medicines if you are putting him/her on GFCF diet? Do the medicines contain gluten or casein, and how do you cope? I put her on panadol syrup to control her fever, but realise that the syrup was quite sticky in consistency, so suspect that there could be gluten.

        TIA for advice.

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        • C Offline
          cnimed
          last edited by

          Hi, most syrups are made from wheat or corn. I had to search really hard to find sweets made only from rice malt or sugarcane for my kid. Another consideration is the coloring.


          hth.

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          • A Offline
            autumnbronze
            last edited by

            ImMeeMee:
            it is one of those bad days. such is the sense of loss that I become trapped in kubler's grief again.

            Hi ImMeeMee,

            Just chanced upon your post.

            Loads of :hugs: to you.

            I really like this quote from Schweppes:

            There will be days when they child will regress BUT after going through this difficult spell, the child WILL leapfrog and progress.

            Hope this brings some measure of comfort to you.

            1 Reply Last reply Reply Quote 0
            • S Offline
              schweppes
              last edited by

              ImMeeMee:

              schweppes, I have not put her on antibiotics. in fact, we are scratching our heads as to why she was having diarrhoea, as her diet was not out of ordinary for the last few days. Our only speculation is that she may have contaminated something while putting things into her mouth which she sometimes does.

              one question. how do you manage your kids' medicines if you are putting him/her on GFCF diet? Do the medicines contain gluten or casein, and how do you cope? I put her on panadol syrup to control her fever, but realise that the syrup was quite sticky in consistency, so suspect that there could be gluten.

              TIA for advice.
              Hey IMM,
              My child is not on a GFCF diet. I tried that when she was between 3-5yo, but it was really difficult to administer. So, in the end, had to give up the idea.

              But I do take note of what she eats and what are some of the trigger foods. Excessive intake of sweets and chocolates lead to meltdowns. It's been said that foods high in salicyliates are trigger foods that may affect the child's behaviour and learning ability.

              However, even since I discovered Enzyme Therapy, I noticed that it has helped manage her behaviour better. The enzymes help to break down the food better for better absorption and digestion.

              Hope that helps. 🙏

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              • S Offline
                schweppes
                last edited by

                ImMeeMee:

                I do believe that the child will get better after hitting the bottom, just that it is difficult to cope with the emotional distress as a parent at that particular point. It is painful to see your child trapped and feel helpless about it.
                Going through the bad spell can be a difficult period. It's like a \"what have I done wrong\" feeling. You go through so many emotions like \"I thought he/she is improving\", \"will it get better?\"

                I tell myself that I have to stay strong, people tell me that I have to stay strong. But sometimes, it's anything but. Really easier said than done.

                And yet, we have to stay strong. When I read LKY's interview with the NY Times, and the interviewer asked how he copes watching his wife suffers and he replied, \"what can I do? Life goes on\". That really struck a chord in me.

                I can imagine what he must be going through, watching his loved one suffer and feeling helpless. Guess that's what us mothers and fathers go through as well, when we watch our child or a loved one suffer. \"What else can I do?\" Do I feel like it's doom and gloom sometimes? Yes. But, still, we soldier on. And we try to hang in there. And pray that the good times will come again.

                I don't mean to get all religious here but for me, faith was what pulled me through. I'm not a deeply religious person, but as a Catholic, I prayed very hard - for strength, for faith. I really believe that it is with Divine intervention and family support that I have the strength to carry on helping my child.

                Just my humble sharing...

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                • I Offline
                  ImMeeMee
                  last edited by

                  [quote=\"schweppes

                  Hey IMM,
                  My child is not on a GFCF diet. I tried that when she was between 3-5yo, but it was really difficult to administer. So, in the end, had to give up the idea.

                  But I do take note of what she eats and what are some of the trigger foods. Excessive intake of sweets and chocolates lead to meltdowns. It's been said that foods high in salicyliates are trigger foods that may affect the child's behaviour and learning ability.

                  However, even since I discovered Enzyme Therapy, I noticed that it has helped manage her behaviour better. The enzymes help to break down the food better for better absorption and digestion.

                  Hope that helps. 🙏[/quote]

                  thanks schweppes. i guess the concept remains to cut the supply of gluten, casein and salicylates in the diet, either by abstinence or by intervention with enzyme therapy for further breakdown.

                  our current challenge pertains to salicylates as they seem to be everywhere, even in fruits. after cutting gluten and casein and if we cut salicylates further it seems as if dd has nothing else left to eat.

                  so we are currently considering enzyme therapy but we are still in the process of convincing ourselves on the risk-benefit ratio.

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                  • I Offline
                    ImMeeMee
                    last edited by

                    thanks autumnbronze and schweppes for the kind words once again. it has made my journey easier.

                    1 Reply Last reply Reply Quote 0
                    • I Offline
                      ImMeeMee
                      last edited by

                      dear wawa


                      sorry that i am responding to your post only now, as i have just visited the thread on ‘what do we want our children to become’

                      i can understand the anguish that you are facing as i have recently experienced that in my dd3. actually no matter how hard we try to describe it, no words can truly reflect how we feel - confused, grief, scared, loss, anxiety …

                      the biggest fear of a mother is the loss of her child, and for a ASD mother this fear is especially real, cos even if the child is physically with us we constantly fear that we have lost the child in his/her own world and the helplessness that we are not able to reach out to him/her. For me, she is there but not there.

                      even up to now i am still swinging to and fro within kubler’s grief, a few months after the assessment. at times when things are normal and I am at peace with myself, pangs of pain, hurt and loss can still hit me out of the blue and catch me unprepared.

                      what will dd3 be when she is grown up? that was one question that first hit me and dh when we first suspected her of ASD. and the mere thought of it broke both our hearts at that point. but we are focusing on what we can do to help her currently. we have even stopped questioning the psychologist’s assessment.

                      the parents in KSP have been very kind in their words of encouragement when they see my posts, and I am truly appreciative. But the internal emotional war is mine and mine alone to deal with. I have no answers for you on your emotional turmoil, but I hope my words can help provide some solace. you could be crying and laughing at the same time while you are reading this, cos it is a whole string of mixed feelings to be able to feel the loss and not feel alone about it. it is a phase that we all go through. that’s just part of our lives as ASD mums.

                      I will send you a PM in a short while.

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                      • H Offline
                        hl_ng
                        last edited by

                        Hi,


                        I have a boy who is also ASD at 6, going to main stream next yr… now my main worry is how to cope in his new school.

                        Can parent share how do you cope with the school, teacher and their behaviour?

                        Ng

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