All About Autism
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Hi Wawa,
Sori to hear about your distress. I can understand the stress and anxiety that you are going through. Just wondering, in addition to the speech therapy which your ds is currently on, is he also going thru OT? Also, some kids respond to a gluten & lactose free diet and enzyme therapy, and they have been known to help some kids on the spectrum.
Whilst there may not be a single cure or therapy that may rid autistic traits, but I truly believe that a holistic approach will help integrate and gradually heal the child in the long run. For example, OT may help in the child's sensory issues and stabilise his vestibular and nervous system; the diet and enzyme therapy will help in the elimination of wastes and improve on the absorption of food nutrients.
He may be crying as he could be \"in pain\" due to sensory issues. I know of a child who is averse to photo-taking. She mentioned that whenever the camera flash lights up, she feels that someone is \"piercing a knife\" into her eyes. I know this sounds horrifically graphic but that was how she described the pain to be like whenever the camera flash goes off. Another child cringes when someone touches her, even though it's just a light touch on the shoulder.
Guess, each ASD child has different issues. I know I have mentioned this before, but it will get better. It may not seem like that now, but it will.
When your child is physiologically and emotionally integrated, the learning will slowly come along. But this will take time. Takes a lot of patience, understanding, patience andbut both ds and yourself will slowly get there.
:hugs: -
WaWa:
all the best, Wawa, and hang on. dont give up.Dear all
I am sure all of you have now read today's ST on adults w autism. For those who have not, do try to get a copy & keep it for future reference. It is as detailed as it can get for now.
It broke my heart reading the few pages of article - the story is soo close to my heart.
Even tho my child is still young & started early intervention, I am very worried for him. I honestly do not know how far he can progress... I can only continue his early intervention and hold on dearly to the tiny ray of hope. He is coming to 4 soon ... after 1 full year of speech therapy & > half a year of early intervention, he still doesn't talk and still in a world of his own. In fact, I find his condition \"deteriorating\" despite the early intervention. He started to portray more \"traits of autism\" this year (ie flicking of fingers very close to his eyes, screaming, babbling & more babbling, body rocking, arms flapping.... & more temper tantrums & definitely MORE wailing !!!) It is really painful to see our dear child portraying all these \"idiosyncracies\" and only God knows if he can ever ever climb out of the spectrum or ever ever be able to integrate into society.
We do try to be positive & keep our hopes high ... but we are careful not to be \"swallowed\" into self-deceit unknowingly. Of course, we do pray hard that with early intervention, he will be able to lead normal life or \"close to normal life\" which is why we are still continuing w his special education & therapies. Right now, we are working on his eye contact, speech & behaviour; don't have much bandwidth to even think about his academic development (this is quite far back in our priority for him now). It is such an irony seeing how many parents today are relentlessly signing their kids up for countless enrichment classes so as to hone their children's academic achievements whereas I am relentlessly signing my kid up for therapies after therapies just to see that he achieves speech & eye contact !
Still waiting (shall i say longing) for the day where he can utter meaningful words, hold a sensible conversation & has lesser temper tantrums! Can't wait for the day to come where he can control his temper - no more screaming, wailing, body rocking both in public & at home - How NICE that will be -
WaWa:
It is such an irony seeing how many parents today are relentlessly signing their kids up for countless enrichment classes so as to hone their children's academic achievements whereas I am relentlessly signing my kid up for therapies after therapies just to see that he achieves speech & eye contact!
Dear WaWa,
Really so sorry to hear about your heartache. Yes I too have read this Straits Times article. Never thought I will be reading it but because my DS at coming to 3 years is still mono-syllabic and earlier on had a scare due to his poor eye contact and attention in pre-school hence sent him for early intervention!
It is indeed an irony to see the race going on especially when own kid is not even up to the usual devt. milestones. When my friend suggested this enrichment and that enrichment, I got to tell her I need to attend speech therapy classes to get my DS talking first. Some-more suggestions on even more enrichments and I got to tell my friend if my boy can attend a normal pre-school nicely, that will be an achievement in itself!
Take care and entrust your child to God! -
Hi Schweppes
nice to speak w you again
my avid supporter who never fails to respond to my posting...and always helping me w informative read ..... how hv u been ?
yes i have since put my son on GFCF.. but, not 100% lah... maybe only 70% ... the major milestone i did to his diet was being able to switch his cow's milk to rice milk completely ... that's 50% liaoI have also removed fish from his diet... these days he eats rice / bee hoon / kway teow with broccoli /french beans or spinach as veg... meat is pork ... and only pork ... i seldom give him chicken (i do but seldom).
Very occasionally , i still give him some bread(i know this is no no but no choice la.. anyway it is occasional.. ) And occasionally some birthday cakes too (just a small slice) ..
Have not tried enzyme cos i heard not cheap lei.
Hi ImMeeMee
Thanks so much for your encouragement. I am trying to keep my chin up too
Hi DessertWind,
I read w interest abt your friend \"recommending enrichment classes to you\".
Some time ago, i posted here...and i remembered a fellow parent responded by saying \"sometimes friends , be it well-intent or not, do not know better &...best to ignore them...\" ...Initially I thought nothing of this statement, but now I find it sooooo true...
I have this friend who ever once commented \"I think if you keep sending your son for so many classes (she meant the therapies), it is of no use.. it won't help cos he will be so tired...\" I take it to mean that she is implying I am just like a typical kiasu parent , signing my kid up blindly for classes (therapies in my son's case) but fail to realise my son \"can't live up to my expectations\"
What she failed to realise is.... my son's \"so-called classes\"(ie therapies) are not similar to those enrichment classes ... In Autism world, ABA has to come consistently, best if done daily to achieve its desired results...I know of parents who send their children for 3hrs ABA Daily.... I can't afford that so i only do 1hr twice a week. For parents who don't know what ABA is.... no point telling them so much. For, they will miscontrue ABA as those \"commercial enrichment centres\" and may even think my son could be \"like this\" as a result of my \"pushing\". See, My son used to do ABA twice weekly, weekly speech, weekly OT... and my friend, upon hearing this, commented \"why u sign your kid up for so many classes...It is no use to keep going classes...he needs a break\" I didn't know how best to explain to my this fren that these are not your typical \"classes\" ..... and my boy is not your typical kid. They need such consistency to help them \"function\" ...in fact , the ABA therapist have been urging me to do more ...but i cannot afford the time & the fees...
Anyway, I have since decided not to talk too much to parents who are clueless about Autism but yet try to show that they seem \"aware\". Cos , at the end of the day, they don't understand what we are going through, even though they may claim they understand. some also claim they have asd kid, so they understand....but it really depends on the spectrum... my personal opinion is parents w high-functioning asd kids may not understand ASD & the required therapies in excellent details cos their children are high-functioning & most likely won't need ABA . Sometimes when their kids can talk so much & so well, & they still keep coming to me & complain about their child not \"following instructions well\", i do not know how to tell them off nicely to leave me alone... cos they do not know their action is causing me \"more grieve\" ... I mean, for example , if your son (same age as my son) can talk so well, can relate to others, has excellent eye contact, has the ability to communicate his needs & wants ...just that he presents some very \"slight idiosyncracies\" and u keep complaining to me abt him and how u cannot stand his \"idiosyncracies albeit slight\", and here I am, the one with the \"non-verbal, non-responsive, highly in his own world\" child - now, tell me, how does that make me feel? It is like stabbing me right in front of my eyes - the pain is so piercing.
Don't get me wrong - I am not here to say how insensitive or how selfish my friend is... To give her benefit of the doubt, she is probably unaware of her own actions too. Maybe she is too absorbed with her own child to remember that others' are having a worse time than her. My point is , for such people, I now maintain my distance... as I feel I have a lot more on my plate than to listen to her \"sorrows\" which I feel are \"non-issues\" compared to what I am facing, compared to what many others are facing ... and listening to her complaining about how she cannot stand her child doing repetitive work will inadvertently add stress to my already very depressed self -
we judge what is ‘normal’ or ‘abnormal’ based on standards of norms set in our current society.
sometimes I wonder what gives us the right to pass judgement that we are ‘normal’ and the rest ‘abnormal’. For all you know, those perceived as ‘abnormal’ could simply be ahead in the game of evolution, leading the way towards how human kind will be by the next era.
just that those perceived ‘normal’ are not able to see it yet for some reason. -
[Editor's note: Topic selected & edited for http://www.kiasuparents.com/kiasu/content/my-experience-gfcf-gluten-free-casein-free-diet.]
WaWa:
Hi Wawa,yes i have since put my son on GFCF.. but, not 100% lah... maybe only 70% ... the major milestone i did to his diet was being able to switch his cow's milk to rice milk completely ... that's 50% liao
I have also removed fish from his diet... these days he eats rice / bee hoon / kway teow with broccoli /french beans or spinach as veg... meat is pork ... and only pork ... i seldom give him chicken (i do but seldom).
Very occasionally , i still give him some bread(i know this is no no but no choice la.. anyway it is occasional.. ) And occasionally some birthday cakes too (just a small slice) ..
I'm no expert in autism, but I wld like to share with you my experience with GFCF. My son has very bad eczema - the last for months, scream/cry all night, cannot shower, infected wounds type. We saw many doctors but it keeps coming back, and each round was worse than before. In the end, I did a GFCF (plus many other food-F) diet for him.
I now spend a lot of time reading up on allergies and on allergy forums, and there are mothers who are doing GFCF diet for their austistic/hyperactive etc children. The thing I've found out - cannot do half-way, you must go all the way to see results. If the child reacts to it, it's basically a nervous system reaction, so every bit counts. (for my son it's an immune system reaction).
My other son had also been to a psychologist for other stuff, and she mentioned that some of the parents of her autistic patients do see a difference with diet.
I made a lot of mistakes in the beginning, and I gave up many times, as well as cheated many times. :oops: It's really SO SO hard to do the diet 100%. But his skin was really looking bad, so bad as if the wounds are rotting. I told myself I MUST give it a 110% go and set myself a 1-month target. The things I found out:
1. No gluten doesn't just mean no bread/pasta/noodle. Gluten is also found in rye, barley, and possibly oats (due to contamination). (So cannot boil barley water to drink, no holicks, no oatmeal).
2. You MUST read all labels. When you do, you realise it also mean no SOYA SAUCE, no Oyster sauce, no Pasta sauce, no instant mashed potatos, no fried chicken with batter, even some potato crisps/sunflowers etc may have wheat flour as part of the seasoning. It's also used in some sweets and gums.
3. ...Which means no hawker food unless you are very sure they don't use the sauces (which will usually have preservatives and colorings that can also affect the neurosystem).
4. You must check and double check. Some traditional rice-based products have wheat flour added in to improve the texture and consistency of the products. E.g. some brands of rice noodles, dumpling skins etc.
5. For casein, it's found in a lot of products, not just milk. Again check labels, even if you don't think it's possible. Sweets and lollipops sometimes have milk. Cakes and breads definitely have milk. Many biscuits have milk. Western sauces as well. Ice cream definitely no-no.
6. EVERYONE in the family must cooperate!! We don't put temptations in front of my son, I do the diet with him. My elder son knows what the food didi cannot take and will be vigilant. Even the small kid knows and will tell others that he cannot take certain food.
In my son's case, staying off all the top allergens finally produced results within the month. It is a lot of work, but I'm just so relieved that his skin is finally healing. Whenever we eat out, I can see the consequences on his skin and sleep. Now, I cook everything and take it out for him if we have to be out of the house for a few hours, or go visiting. My elder one recently had to go for a few assessments, each lasting a few hours, I woke up early to cook, and bring all the food and snacks along for the younger one. Die die must do leh!
Now that he's so much better, I started doing GFCF/soya/egg-free baking for him. We also give him sorbet treats. I often get people saying \"poor thing, so many things cannot eat\", but all I have to do is to look at the photo of his old wounds (I kept it in my hp as a stick for myself) and I definitely do NOT feel sorry for him. -
deminc:
hi deminc,
I'm no expert in autism, but I wld like to share with you my experience with GFCF.
Chanced upon this thread and read through your experience. I vote you \"Parent of The Year\"! :salute: :salute::salute:
Very very impressed by your efforts. Jia you!!
I think your son is very blessed to have such a wonderful family behind him. -
Hi deminc
Thanks for your sharing.
I applaud your efforts in ensuring a GFCF diet for your child. I tried to do that for dd1 when she was younger but found it expensive and a challenge to do so. I was working FT and had no maid to help out. (actually, still have no maid now) When younger, my kids went to childcare and I cd not rely on my mother to cook a GFCF diet for my children. So, it was difficult and tiring to sustain the diet throughout
In the end, I did what I could. It was half-hearted effort.
Recently, I was introduced to Enzyme Therapy last year and currently my dd1, is on it. I find it useful as the enzymes helped to break down the foods that the children eat to make it easily absorbed into the body.
If you want to know more about Enzyme Therapy, I recommend the books written by Karen DeFelice. She wrote:
1. Enzymes: Go with your gut (more practical guidelines for digestive enzymes)
2. Enzymes for Autism and other Neurological Conditions
I bought the books at Kinokuniya.
Is Enzymes Therapy expensive? I think it depends on what and how much supplements one buys. Then again, nothing is cheap. But I see it as another form of intervention and if it helps my children, then I will do what I can within my means to help my children get better and healthier.
Ever since dd1 is on enzymes, I noticed that she is more in control of her emotions. It could be that she is older now and so a little more matured, but I also believe the enzymes supplements helped in balancing her neurological conditions as well.
JMHO :celebrate: -
Hi Schweppes,
Tks so much for all the info. Tks to your good rec, we've started DS on enzymes as well, although I I haven't delved into exactly what else to do yet. THis is all so exhausting, and I wish KSparents has one giant thread called LD or something. Saves us from thread hopping :).
I was thinking - since the kids are wired such, something else we can do is to look at their learning styles. This is mentioned in the Mislabeled Child book but I'm not sure where to start except that kiddo is visual spatial. One recent thing I picked up which could be interesting to ask your kids is - which of the senses do they enjoy most, and which are they irritated by the most. Predictably, mine said eyes and ears respectively, which may be troublesome because despite learning best with his eyes, he has had/may still have visual issues. Are your kids similar?
And Deminc, can you share GFCF cookbooks? DS' rash comes and goes with eating wheat based products. But he absolutely refuses to take enzymes to digest the gluten, so we're kind of stuck. -
Yes, I have looked into learning styles as well. Nothing rigorous, nor did I send her for any formal training on this. What I do is very simple and I rely on instincts and books to guide me. For example, dd1 is a visual person, so I give her coloured pens and highlighters to write her notes or highlight key words/ phrases.
For those strong in visual learning, one can use mind maps, but somehow, that didn’t quite appeal to her. But lists or writing down main ideas seem to work for her. One size doesn’t fit all, so need to find out what best appeals or work for our child.
I borrow books on drawing and expose her to visual arts. This seems to spark an interest in art. Whilst she may not be artistically talented, at least her interest is there and drawing becomes an outlet for her to release stress.
Guess, I’m learning and experimenting all the time.