baileyj

Max is 6, and this year, so far so good. He can talk/understand more so its not as bad. In the past we have: Taken photos of the presents under the tree, and showed him the next year so he knows whats coming. Tell him whats inside each present before he opens it. Ask everyone to wrap them very loosely with hardly any cellotape. Don't make him eat XMas dinner, he has dippers and chips same as always Warn him before he goes downstairs on XMas day that there will be presents Don't force him to open any, let him do it when he wants to, maybe gently occassionally say "shall we see if we can open another present. It can take days, but thats OK. Warn everyone not to expect him to like his presents Let him have time out whenever he needs it. Hope this helps Jo

I think when DS was about 20 months, he was content to be alone all the time, had no need to interact with us, and didn't understand anything we said, when others the same age could understand their parents. I remember my cousin-in-law came round to ours one Summer day with her son who was 6 weeks younger than mine, and she asked him "did he want lunch", and he knew what she meant and nodded. I was shocked as I knew my DS couldn't understand anything at all. Then noticed more and more in the next 6 months. by the time he was 30 months, we were referred to CDC. But hey....3 years on, the boy doing good, different world, but a happy one. Jo

Perhaps as others say, she feels secure with her jacket and shoes on, my son likes heavy weight in bed, it seems to comfort him. Found this from ages ago on weighted jackets/blankets, hope it may help. http://www.asd-forum.org.uk/forum/index.ph...EIGHTED+JACKETS Jo

Hi there Pinkpanther. I really feel for you reading your post. This is a difficult time for you. Its easy to say don't worry, but I remember when it was us going through these worries, it would have been easier to stop breathing than not worry. My Max is now 6, he started assessment with paid/SALT when he was 2 years 11 months, and got diagnosis when 3 years 2 months. It was when he started playgroup at 2 that we really saw the differences, I thought it was normality, then had a big shock when I saw how the other children could speak and understand. Got referall to paied and went from there. I remember in the beginning being so worried, and resentful of the assessments, and also would Max ever speak. He was (and still is to a degree) echolaic, but as some of the others say, its a stepping stone to language. At 6 Max can understand alot more, his speech is "selective", but so much better. Learn as much as you can about ASD, and see what the paied and SALT have to say, you maybe surprised. Hope all goes well. Jo

Max (6) had one last year in Reception, it was actually a carpet square that he used a circle time to sit on for his own space. I have to say it was his LSAs idea and she just did it, but Ive got a feeling OT supported the idea. Nothing officially written down though. Sorry. Jo

Decided having looked at the BLOGs, to have a go myself. http://memaxandautism.blogspot.com/ its just my ramblings about daily life with Max (6) and my thoughts on things. If anyone wants to have a read, feel free. Hope its OK. Jo

Hi Liz, thats really great to read. It must give you alot of peace of mind to know he is in a kind accepting atmosphere. Thought I'd also give our experiences. Max has just started Year 1 in a mainstream school. He's been there since nursery, he has a statement with 27.5 hours, again the school make up the difference. He has full time 1:2:1. All the things that you say about your school is the same for Max's school, and has continued, we are a year ahead and the differences over the last 12 months in Max have been remarkable, so Liz, it will possibly get even better. Max has headphones (I got them off a link off this site actually), called Peltor Kids, when the classroom noise or assembly noise gets too much, he wears them, he can still hear the teacher but they filter out all the background noise that distresses him. They are in his school bag and he just fetches them or asks his LSA whenever he likes. They have been a godsend with the sensory problems, I'd recommend them cost about �10. Jo

Max (5), has obssed with... Thomas the tank engine and other engines, carried Percy round with him for a year, did everything with Percy in his hand Pingu cartoons Numbers Toy Motorbikes Mr Men books Now its the PC, Looney tunes site games, cbeebies site, Mr Men site Simpsons PC game Gameboy - anything with racing games Nintendo DS - anything with racing games Playstation - again....racing games His absolute favourite at the moment are toy cars, particularly Disney Pixar Cars, he is Lightening McQueen, and I'm Sally, and Dad is Mater! He enjoys them greatly, and acts out games, and crashes, and fixing etc, and really loves the RAC Breakdown advert at the moment We tend to let him enjoy his obsessions, particularly when he is very agitated or nervous, as its his safe haven and calms him down. The difficult part is prizing him away from them, else he would be doing them 24x7. When he was younger, his numbers obsession helped him with stressful situations, we would count how many steps to so and so, or if he wouldn't eat, we would count the number of things on his plate etc. I think what we see as obsessions, to Max are just wonderfully interesting, safe hobbies. Hope that helps Jo

Ive printed it too, it really helps me understand how Max must find all these things. I tend to forget, this is a good reminder for me. Also going to take it home to show my husband and family. Thanks so much. Jo

Max (5) tends to react to things not working properly, and the speed and severity of the reactions depends on how he is feeling generally, if he's playing with a car and the door doesn't shut properly he will just scream and hurl it across the room (last week hit me in the spine and made me burst into tears). If you try and calm him or ask him whats wrong at the point of meltdown he will growl and lash out, and punches you. If you tell him off, as hubbie did last week when he hurt me, he bursts into tears and is devasted then shuts down. So... no answers at all, he tends to retreat to his bed after an outburst, and we wait till he's calmer, then I cuddle him, saying shhhhh, and later when all calm, try and use simple words to say "throwing is bad, it made Mommy sad", any more language he wouldn't understand. Dread to think how it will be when he is bigger, at 5 its shocking, and getting more aggressive. Like one of the other posts, also i prefer he hurts me than his sister or another child, so I tend to get in the way of others to protect them. Jo

Hi Max is 5, he was diagnosed with Autism at 3. He's a happy loving little boy. He goes to mainstream school with fulltime 1:1 support, that has been the best thing for him, we are lucky though as his 1:1 is very experienced with autism and had supported a little girl for 7 years through the same school, and she loves Max which is most important. They have a great relationship and he trusts her. The school have been fantastic, totally supportive and adaptive for all Max's needs and differences. Max had Portage for 2 years before school, play therapy really and was brilliant, would highly recommend that. He has speech therapy, but I think thats been a waste of time, his speech therapist comes to school once every half term, tests him, gives some suggestions and then goes. Pointless, he can use words, label things and ask for things, but has no idea how to have a conversation with us or especially other children, he quotes lots of adverts and cartoons, which weve learnt to interpret which is which for moods. Apart from that we haven't really tried much apart from hints and tips weve got from this forum really, again, been the best thing, real life experiences of people in a similar position. The experts have done very little for us. Sorry if that doesn't sound too positive, but in time you find your own way of doing things, trial and error. Hope you find whats right for you. Jo

My son is 5, and reading that link was really interesting. At 3 his speech was virtually non existent, then mainly echoing, now he still repeats adverts and cartoons, especially if he wants to show an emotion, he borrows the lines from Bugs bunny. It did me good to read that and remember. At 5 he is now using speech a little more appropriately, to ask for things, or tell me things, but he still can't communicate well with is peers, he chatters away. He can understand requests from us now, and simple explanations. I see it all as progress and that article proved it to me. Its all the norm for our children, and reminds us that though they have these communication difficulites, and always will, it does get easier with understanding. Keep up the good work, I know its frustrating, but its worth it. Jo

Thanks everyone for your replying, its really helped. Ive gone for the tooth fairy angle, saying its cus he is going to get "big boy" teeth, and the tooth fairy will bring a ?1 in a special packet. He just sort of looked at me oddly and that was about it. As he never forgets anything, hopefully it will be OK. Will let you all know when the big event happens. Jo

Hi everyone, My Max is 5, and I'm noticing other children of his age are starting to loose their baby teeth. OMG how am I going to explain that in a way that doesnt scare him, and make it seem like a good thing? His communication is basic, he understands quite alot if I use simple words and sentances. He can read like an 8 year old, so perhaps a story? How did any of you explain it and handle it, any ideas appreciated. Did you use the tooth fairy? Jo

Gosh, we have never said anything to Max (5), he just wouldn't understand. He went through assessments and things when he was 3. I don't think he knows he's different, as he has no empathy with his peers, its just not something he thinks about. He's in mainstream school, and has had a full-time TA through playgroup, nursery & now Reception, to him it would be strange to not have help. His communication is very basic, non of this would go in at all. Ive not thought about telling him, but reading some of you have 5 years olds and have, its surprised me a little. I think for me, I'll wait till I feel the time is right and he is able to understand. Jo

Gosh, I'm so glad Ive read this. Max (5) first annual review is on the 22 May, and Ive received no reports, nor have I had a request to write a report myself. Ive read the 2 links and they have been brilliant. Thank you so much. Ive just emailed Max's statementing officer requesting sight of reports, and I'm gonna speak to school today also and see why they have not done so, according to the links they should have sent me reports by now. Off to get back on my band wagon. Haven't had to do any of this since last Summer, I haven't missed it. When he was in nursery it was every month, I'd forgotten how stressful it is. Wish me luck Jo

Hi, I know what you mean. Its very hard admitting to yourself youve got a problem, and hard going to the GPs. Ive felt similar recently, but I don't have a choice on going out, I have to go to work. I posted on here recently asking about meds. I didn't go to the GP, I bottled out, but I did talk to my husband, cried alot and told him about it, and am now taking St. Johns Wort tablets (herbal anti-depressents from the chemist). They take about 2 weeks to kick in, but now I am feeling better and lighter. I also take Kalms. If you can't bring yourself to go to the GP, perhaps give the herbal tabs a try? No matter what, youve taken the first step and talked to us, which I think helps. I think January/February time is a strange time of year, alot of people I talk to at home and work are all feeling very low, were all fed up of winter now and want some daylight. Take care Jo

Hi Helen, My son Max is 5, with the eating, weve found we can't do anything about it, he won't deviate, so we just go with it and at least its something. About the bed, with Max, we put in a TV & Video and let him fall to sleep with it on, it distracts him. I'm sure people would say its the wrong thing to do, but hey, it works for us. Jo

Hi Forbsay, thats just brilliant, I bet your so proud. Well done to your little one. My Max also 5, is now reading, and its turned our world around, whenever he can't understand something, we just write it down, stick charts up everywhere, and write little books for him, its great. Weve got nowhere with toilet training at all, then since he could read, we did some charts 1. pull down pants, etc etc and stuck it on the bathroom wall, and hey presto. If he's worried about something, we just write it out, and he can quietly read it and it calms him down, it sort of distracts him away from his fear. Keep up the good work with your little un Jo

I just wanted to ask, do any of you parents have anti-depression meds or something to keep you calm. I am finding lately that I am struggling to cope more and more, I feel so angry about the smallest of things, am moody, wound up all the time. I don't seem to be able to handle my stress levels any more. Sometimes when watching TV I notice that I am grinding my teeth and clenching my fists, I never relax. My job is very pressured and I am finding that harder and harder to take. I am thinking shall I go to the docs and ask for something, but I feel a fool and that I'm giving in. Do any of you take anything? Jo

Brilliant, I bet your so chuffed. Jo

that could have been me talking, my thoughts exactly. I think the person who's life its changed most is my 12 year old step-daughter, she so looked forward to having a little brother or sister to play with, and then when Max came along its all turned out so different. Though he loves her dearly, its all on his terms. Grace often has to go without or not do things because of how it would effect Max, and at 12 its hard for her. She is so patient though. Over time Ive come to accept how different our lives are and will be, I try to just live in each day, which is tough for me as I'm such a planner. Jo

Steph, how about: Sensitivity to noise, particularly high pitch Taste Sense of Space....lack of awareness of their own body size Clumsy Sensory confusion, covers eyes when doesn't want to hear something, and vice versa Touch, under or over sensitive, eg. likes deep pressure hugs/hates hugs Jo

Thanks Daisy, I never thought of that, time to dig out the Bob the Builder kit then, its a really good idea. Thanks for answering, it helps that someone cares Jo

Bullet, you are describing my son at 2 &3 to a tee, the likeness is amazing. He's 5 now and lots of the things you describe are different and better. Regarding sensory issues, I agree its vital to include, for Max they are the source of lots of his problems, often his behaviours when I look at whats behind them are due to sensory issues, particularly noise, and sense of space. I often find if I can alleviate his problems with those, that other things improve. Ive recently got him some Peltor Kids ear defenders....marvellous, he loves em. Good luck with our article, it sounds good. Jo