Valiant_Skylark

Both mine stuttered as littlies. SALT advice was as above. Neither stutters now. Both have had SALT for other aspects of their speech though. VS xx

Oooh, I've just e-mailed my two to see if it cheers them up. I couldn't make the Help2 courses (they would need to be closer to home) - What else did they recommend? My eldest is currently very up and down, with a dodgey school placement fanning the flames, and I'm quite worried about him and us, to be honest. Any tips on dealing with anger/depression, however small, greatfully received. VS xx

Both my boys had similar poor health until they went GF/CF on the test results and advice of Sunderland Uni's Autism Research Unit. Neither boy has had anything like (and I really mean that) such bad general health since. In fact, youngest son saw a new doc recently for a verrucca(!) and the doc asked all sorts of questions about how his dramatic improvement in health had come about! I left saying that I was just sooo pleased to only have to go to the docs about such tiny things as verruccas now. I can't thank ARU enough for what their intervention has done for us. Doc was v interested. Just out of interest, we've continued to have plenty of stress (mainly due to the ###### education system), but our resistance seems stronger/better. VS xx

Fiorelli <'> <'> <'> Thinking of you - you are a brilliant mum in difficult circumstances. vs xxx

I must have gone to a similar talk to Cat! My eldest was also "inappropriate" and we were told to explain exactly what touching was appropriate and what was not, right from the word go. These kids do not pick up the social taboos instinctively (well, they don't if they are anything like my son) and need to be explicitly TAUGHT every tiny bit. It is certainly not "funny" or "cute", but rather a liability as the child gets older (it was one of the main reasons we insisted on diagnosis - for his safety and that of ourselves and other people). I believe you are right to be concerned and to show such a responsible attitude to educating your son correctly for his ASD. The teacher's comment might have been taken literally by your son (ie that she really WAS thanking him for touching her) and so probably wasn't ideal?! I'd suggest that "ignoring" won't help your son and nor will "telling off" - just EXPLAIN in a matter of fact manner what bits of a body different people are allowed to touch (books on social skills often cover this using diagrams etc) and the encourage him to stick to these rules? Use pictures to make the concepts clear to him, and share your "rules" and pictures with his teaching staff. If they are worth their salt they will support you in school as you are supporting them, effectively, outside school. All the best. Hope you find some suggestions that work for you. VS xx

My eldest has had a hard time coping with most clubs and activities out of school too. We had more joy with clubs and activities aimed specifically at special needs kids, but even these were too hard sometimes. We've had most joy with RDA (Riding for the Disabled), which he has stuck at for over 6 years now, although I have been told that ours is a particularly tolerant and friendly group. There is often a waiting list, so it is worth putting a child's name down if you think he might be willing to give it a go. Art and Craft (special needs) group worked for a while, but once he realised what "real art" looked like after a visit to a gallery with his school, he refused to do it anymore Since it was recommended by the Paed, we have done Beavers, Cubs and Scouts. Our group is very small (there are currently only 3 scouts) and this has worked well. The leader of the scout group is like a mentor and has infinite patience provided eldest son is not simply taking the p*##! Eldest son is now Patrol Leader. Several of the leaders have direct experience of dyspraxia and ASD. A child currently attends Cubs with a "Me too!" helper, which makes the group accessible for him. Obviously, not all groups are as clued up as ours, but could you investigate different groups to see if any are far better for your son? Could you also see if there are any volunteer projects going (like "Me too!") where somebody attends the club with the child as their individual supporter? It might help if the helper could explain the rules etc? We have found that with a good cub/scout group eldest son (12) has been able to have a taster of many activities without having to get to the stage of frightening himself when it moves on too fast. He has done canoeing, survival skills, horse-riding, navigation, IT, fitness challenge, art and craft, performer, you name it... Eldest son will now confidently man a stall, act as "Security" at events, stay away from home, attend church services for main events (which he wouldn't do AT ALL before!) etc. I'm beginning to think that it is the peole who run the clubs and activities that can make it or break it for our kids. Hope you can find even just one thing that will expand your son's world beyond his own four walls. I'm sure it will be worth it if you can. Best of luck, vs xx

This thread caught my eye as I'm currently reading Temple Grandin's new book, "Animals in Translation". Temple makes loads of comments about the way different breeds are going in terms of their temperaments and genetics... and how good a pet they are likely to make (or not!!!). I'd strongly recommend that you buy and read it BEFORE you make any purchase of a puppy. This book was excellent. Not just limited to dogs, it draws together a whole lot of evidence and speculation on animals and people on the autistic spectrum, and how they might differ from NTs... and hence how to deal with both animals and autists. I was hooked from the first page to the last and a lot of what she says just "felt right". The most helpful book I've read for a long time. VS xx

Yes. If by "fine" you mean ignoring the "effort" it takes and assuming that the child reads, on testing, at or above their age. Eldest son did all of the things you mention too, but was always assessed as a very good reader (say two plus years above his age). BUT in reality he had severe problems with eye-movement control (and dyspraxia, ASD and elements of dyslexia) which meant he was seeing the words all over the place and then having to effectively make a best guess as to what he was reading. Because he was a clever little stick, he mostly guessed correctly, hence the teachers always thought he had "no problems". We noticed far more problems with reading when the child was tired or when the text got smaller as the child got older. He also tended to miss out the "little" words like and, but, so etc. Most school reading assessments tended to be just at the single word level, where he obviously had far less problems, so it was only when we booked into the Dyslexia Research Trust (DRT) for a free assessment, as we were fed up with being ignored, that we finally found just how hard he was working to read at the text level. DRT gave us yellow specs and eye exercises that helped, and we have since gone on to see Ian Jordan (Orthoscopics) who helped further. I don't know if this helps at all. My son's dyspraxia is severe - he isn't just slow with his writing, he flips orientations without realising too (and his punctuation is "challenged"!) We now have get-round technology written into his statement ie laptop and scribe. Getting the school to honor the Statement provisions has, however, been an enormous struggle that I won't go into here! I'd suggest checking out everything you can find on dyspraxia, dyslexia, behavioural optometrists and people like Ian Jordan. Good luck, VS xx

Funnily enough, DS(12) ended up at the GP this week with a bony lump on his foot which was slightly sore. The dx?... Flat feet! Apparently, the feet are so flat that they are rotating and putting pressure on the bony joints on the inside of the foot. Dr's own daughter has similar problems so Dr said he had researched it fully (having missed it, embarassingly, initially), and "orthotics won't do anything". I asked if it was linked to dyspraxia and ASD, but he said that these sorts of problems are very common anyway and he wasn't aware of any specific link. I mentioned that DS toe-walks sometimes, so Dr asked son to go on tip-toes... then he said not to worry as the feet showed an arch when the feet were in that position. Apparently, he said, that is the crucial bit... if there is STILL no arch the situation is more serious. As DS had the arches he advised just leaving alone unless the pain returned, in which case I should ring him back to discuss further. In the meantime, DS's feet have not been painful, so I'm just watching and waiting. Interesting thread! VS xx

Goodness! How awful for him (and you). <'> <'> <'> I used to suffer from something that sounds similar when I was a child, but I don't know if it was for the same reasons, obviously. Could Ian Jordan (Orthoscopics) help to find or at least eliminate some possible causes for his problems? Ian helped me and did ask when I saw him, "How on earth did you manage as a child?" to which all I could answer was, "Not very well". I remember feeling so overwhelmed with lights, smells, noise and motion etc that I felt nauseous and had a splitting headache for months at a time. I sometimes had to lay down in a darkened room for a period after school to calm my system down... and I could never eat after coming straight in from school as I felt too sick. Needless to say I was very skinny from refusing food (my poor Mum always worried about me, bless). What ideas do you have about what may be causing his migraines? What does your son (if he is able to say) think makes things better or worse? Have you eliminated all the more usual foods that cause problems? I get blinding headaches with citrus fruits too. In the meantime, the school sound about as useful as a chocolate teapot. I'm having trouble with my own son's school, who are becoming experts at ignoring advice, to their own detriment... but , hell, what do they care?! This will be even trickier to deal with as the problems don't directly impact on them... it is you and your son who have to pick up the pieces every evening. I hope someone will be along soon who can advise better than I can, but in the meantime you have my greatest sympathy. Our school certainly seems to care more about power games than actually solving a child's problem, so the very best of luck. vs xx

Hi Mel, My Yr 8 son does the blu tak fiddling too as it was suggested by the OTs. He hasn't had any trouble about "being different" over it as far as I know, although the TAs had to receive training to accept that this fiddling helps him! I've also noticed that if you can keep lips moisturised with a lip salve and hands moisturised regularly too the incidence of nail biting, skin damaging etc decreases. Never let the child get thirsty either, as the dry lips seem to attract the fingers. This has worked for us. Obviously, stressors must be identified and dealt with as best as we are able too... but every little bit of extra tlc and help helps too? vs xx

Thanks for posting this link. I often wish now that I'd had this sort of info when my son was small. It might have been more cost-effective to have begged, borrowed or stolen the money and got the right placement, via Tribunal if necc, at that early stage. vs xx

My eldest (severe dyspraxia & ASD, 12) did the "Write from the Start" Teodorescue Perceptuo-Motor Programme twice - once at infant school and again at junior school. His handwriting improved a bit, but for the effort it took not a lot. His Statement now provides for a scribe (someone to write for him) and access to IT (AlphaSmart word processer), although the senior school do not always do what the Statement requires (but that is another story!!!) My youngest (dyspraxic traits) is currently on Book 6b of the programme and he is now Year 4. His writing has improved more quickly, but is still a slog. Youngest son has eyes that cross the midline, whereas eldest son's eyes don't, and I'm not sure if this is part of the reason why eldest son still struggles with things like reversals etc. Also youngest son uses punctuation etc correctly which eldest son still can't do. Eldest son did all his Teodorescue at school (either before or during assembly with TAs) whilst unstatemented. In contrast, I am expected to do all youngest son's programme as "extra" on top of normal homework at home. This is a lot of extra work! Youngest son does one sheet a day, (and it must be reasonably carefully done to "count") at the same time each day. If he does all the sheets (and his reading, maths and literacy homework) he is given �20-00 at the end of each half-term. He gets no pocket money and all his other money is earned from chores (which he can pick). Youngest son manages this well. If I had to do the programme at home with eldest son, I would arrange some similar "motivater", but keep the time interval between rewards shorter and build in more flexibility to cope with days when too much ordinary homework came in to make doing "extra" feasable. Teodorescue is a slog and boring and you may not even see fantastic results if your son proves to have any large degree of dyspraxia, so the more sympathetic you can be in terms of giving yourselves a "treat" for being responsible and doing it, the smoother it should go for all involved. Best of luck with it. VS xx

I used to chew on licorice roots when I was trying to lose some weight many years ago. Quickly stopped, however, when I found out that they were not the neutral food I thought they were. Have long forgotten the details but vaguely remember there were problem issues to do with affecting potassium, cortisol and blood pressure. As cortisol is a stress steroid (which I wanted to lower) and I was getting higher and higher bp, I decided to give the root a miss. Just a thought. vs xx

My story is almost the same as Lisa's. Dad chaired the PTA and I helped out several times a week and at weekends with class (reading, trips, sports day, activity days etc) and social events. When we disagreed with the school about each sons' level of disability, we came up against lies, stone-walling, lack of basic respect - in fact you name it - from the school staff. Eventually we felt so let down that neither of us was willing to put any more in. We were getting just too tired from dealing with our sons tantrums 24 hours a day anyway. At the next (junior) school, we were far less willing to "give" and felt less let down when that school, equally, gave little. At the current senior school, my "help" is limited to setting out, in writing, what the school has done to "set up" my son, what changes and strategies will help my son instead, and reminders of what is expected from the school, in law, to meet his statement. I help my own son by helping his organisation, for example. I have been known to remind the school that it would normally have to pay for the quality of advice that I have, so far, provided without charging. I am blunt, far more businesslike than I started off (no longer "chummy") and send out the message that I do not suffer fools gladly - especially those who lie or otherwise sabotage my sons' education. I no longer care much about being "liked" or "popular" with the school staff - I have decided to sacrifice that (if needs be) for the goal of being effective. I try still to be "pleasant"... but "steely"! This way I feel less like a victim and have less resentment. I have no wish to help out anymore in an altruistic way. I now only look to put myself out for those who reciprocate. I can't afford to do anything else. I was never police checked, nor was I ever turned away when I did offer help. I did always avoid volunteering for activities, though, directly related to my own child if it made him clingy, losing concentration because he was wondering "if Mum would be there today". Perhaps this is a crucial factor? Best of luck and I hope you can grow a thick skin to protect yourself. VS xx

That was helpful. Thank you for drawing it to our attention. VS xx

I beastfed both mine as I was worried about introducing cow's milk and allergies. HOWEVER... ASD son had practically ALL the problems mentioned above and it was a nightmarish period of my life which I would never want to repeat. If the figures are correct that there is some 50% overlap between people with ASD and dyspraxia then say half the babies might be expected to show these sorts of co-ordination problems with sucking, chewing, swallowing etc? My son scored below the second centlie for most areas to do with sensory integration and praxis, including "oral praxis". I did a first aid course last week and impressed those running it by expertly clearing the blockage from my "baby" with one well-aimed thwack. "Years of practice with a dyspraxic baby", was my dry comment - we had quite a chat after that! I'd STRONGLY recommed that parents with babies (or children)like mine do a paediatric first aid course ASAP; It will boost your confidence in dealing with the inevitable choking and if ever your baby stops breathing you will be a bit better placed to cope. It was our OTs too that seemed best to understand about the feeding issues. Our health visitor was totally ignorant and blamed me for his difficulties with breastfeeding, drinking from anything, choking on anything which wasn't a puree, difficulties sucking... All the "fixation" on the breast issues were there, and perhaps because feeding/sucking was so effortful and tiring for him, he fed every half hour or so. Ahhh, happy, happy days...NOT. vs xx

Perhaps you could also point out that carrying "surplus kit" would add to the weight that the child has to carry round all day, and that decreasing the strain on your son's joints should be an urgent priority? If it were my child, I'd also be suggesting, in writing, that in ignoring the medical advice (submitted on ..(date).. to the school in writing) the school could find itself responsible for any further damage that is done to your son's joints - a position both the school and you would obviously prefer to avoid. My OH had juvenile rheumatoid arthritis and it has left his body in a mess, frankly, which recent x-rays have shown (we weren't told the full extent of the damage when he was "released" as a child from the specialists). The thought of your son being made to walk 2 miles with active arthritis, when the medical advice is as it is, leaves me cold. The school is out of order here and must be forced, if necessary, to act more responsibly. vs xx

I'd agree with Bid. You want a school that WANTS to work with you, surely? vs xx

My boys and I have had practically no ear infections since going casein free and/ or GF. Before it was 20 loads of antibiotics per year. Now I get almost immediate symptoms if I have dairy products and the earache comes on quickly. So I would say there is definately a link for us, which was found by the Autism Research Unit at Sunderland Uni (Paul Shattock). I don't think that if you have asd you will always necessarily get ear troubles, just as my other son still actually had the casein-earache link despite being NT(ish), but there is perhaps a "tendency" to have these links within a family with this neurodiversity? VS

Hope you had a better day today, Sam. <'> <'> <'> <'> VS xx

Today's dose of <'> <'> <'> <'> <'> <'> Thinking of you. Take care VS xx

Sorry, I haven't been reading this thread in any detail for some time, (but I know it is close to Nellie's heart) so apologies if this has been mentioned before... I was reading one of the "Health Issues" books entitled "Autism" by Sarah Lennard-Brown when I came across in chapter 5, page 53: " Encouraging communication 'We have several children with Asperger's(sic) syndrome at the school. As a rule, they are very law-abiding and little trouble. In fact it is very easy, I think, to underestimate how difficult they are finding school. Certainly some of the children we have do not display their anxiety at school. They appear to be coping most of the time, but can become very distressed when they get home. It took me a while to grasp this idea. If teachers are not seeing signs of distress at school, they can easily assume that tantrums at home are nothing to do with them. Now I realise that children with autistic spectrum disorders take a while to process what happens at school. They may not react to anxiety, which started at school, until many hours later. We now have a policy of encouraging parents to let us know about any anxieties that may be building up, so that we can nip the problem in the bud.' (Malcolm, senior school headmaster)" Would this be a good book to take to take into school to show the headteacher if pleas for help and understanding were falling on deaf ears?! vs xx

Thank you, jb and Jen, for your replies. Just to feed back that I was eventually advised, by the School Nurse, NOT to give either of my boys this test (as the risks potentially outweighed the benefits) and their names have been deleted from the list. One less thing to worry about. Phew. Thanks again, VS xx

My ASD son was at a Montessori nursery aged 2. The staff refused to let him move on and up within the nursery school's class structure when they failed to be able to tick all the sensori-motor boxes and thought he was shy... which was why they thought they never heard him talk. He never did talk much after about 18 months, at home or anywhere else (until much later). Imagine their consternation when I pointed out that he could actually read well already - even when he couldn't talk, write or draw! I got the staff to write various words and phrases on cards and to lay them out on a table. Small son was able to pick out all the correct answers, by picking them up, to their questions... very easily. Although he "read" very early, my son went on to have some of the visual problems associated with dyslexia and now prefers to read large print versions of books if poss. Now, age 11, he is reading LoTR and reads widely and for fun. One EP did spot that my son can decode words and "read" texts well above his "age", but hasn't always got a clue what he has read if the gap is too large! Many people I have met who have had children who were early and competent readers say that the gap narrows as the child gets older - the others catch up. It must be very difficult to have a child who can decode words and text but then cannot understand meaning at all. I have heard of one such child, who is now 6. I only hope he can crack the meaning bit. vs xx