melly
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Posts posted by melly
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My hubby isn't great at reading things, hasn't done anything to do with the dla forms, only breifly had a look at the statement and hates the idea of pecs! I guess men handle things differently, they are not great at talking about their feelings or ness good at looking at the larger picture (ie how this diagnosis can effect EVERY aspect of day to day life)
Sounds like ur hubby is in denial, or maybe still 'greiving' for the child he didn't have. Either way, if you feel this is the right move for you and little one I wish you well.
Take care and keep posting
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Cant help at all with the sensory side, but i would worry about an after school club that wouldn't want people back if they didn't follow the rules - especially on the first session! Just seems a bit controlling and narrow minded to me - sorry
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Thanks for the buggy replies.....am off shopping!!!
I saw the quinny one on ebay - went to there site, its about ?400 ouch
I do like the look of the marco sky, the phil and teds look v funky, but I dont think it lasts that long for the baby. I found another called kidz kargo which looks q sturdy too. All i need now is a shop that stocks them to try them out.As for the 'my controls' thingy, am of to give it a try
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I have a 3 1/2 asd boy, and a new baby due in august. Am looking at buying a tandem pushchair, my son is q light for his age 12kg ish, but whatever we buy needs to be q robust as I have no idea how long we will need to use it. At the moment there is no way I could trust him to walk if we are near the road/car park. Any idea........?
Oh and another thing, is there anything other than brain cells that you can keep track of where you left messages? I only get to come on every couple of days, by which time i've forgotten which topics i have left messages on so cant keep up with people.
Thanks all
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Hi
My son is 3 1/2 and hjaving a whale of a time with pecs. It was such a break thro when he first used it to ask for something (a drink I think it was).
The whole system of how to introduce pecs is q long and involved, I am lucky I have the support from the trained staff at his nursery who are teaching me it step by step. The course sounds like a good I dea or there is a book (search for pecs on amazon).
If you want to get on with teaching him I'll tell you the first step that we did (then if you want you are welcome to pm me for more info etc, but i'm no expert!)
You have to start with somethiong that is particulary motivating for the child, something that they cant do them selves or some thing that you can control. If it is a toy, keep it just for this use for a while. With my boy, it was food, namely raisins. Raisins or grapes work really well as they get eaten quickly so the child has to come back and ask for more.
I'll explain it with the raisins, he sits on one side of the table, you facing him and an extra adult behind him.
On the table have a picture (real or pecs one - can send you a pecs one if you need it) of the raisins, ours is the pecs piccy which shows a little raisnin box and some raisins around it.
You hold a pot with 5 / 6 raisins in, saying 'mmmmm' or 'nice raisins' some thing to get their attention. Eat one maybe!
When the kiddy shows that they want the raisins, reaching out their hand or sim, the etra adult guides kiddies hand onto the picture. They may pick it up or may need extra adult to place it in their hand.
You then put out your hand and coax them to give you the picture 'want raisins', smiles reach over towards them etc.
Esxtra adult can guide the picture into your hand.
You immediately say 'raisin' and 'good boy' etc and give the child ONE raisin.
Picture goes back on the table in front of them and you go again.
You can use raisins, grapes, bits of biscuit (quater at a time maybe) a few crisps. Or with toys a wind up thing (as long as it doesn't last more than a few seconds), some thing that lights up or plays a tune. Or bubbles, where you only blow more when they give you the picture. Its whatever motivates your child.
The extra adult is not supposed to say n e thing whilst the are helping. The idea being that they are involved less and less as time goes by until the child can do it by themselves. We tried to do this 3 or 4 times a week, and my boy took only a few weeks before he could do this stage himself.
Having written it all down it sounds a bit confusing, i hope it makes sense. Its worth a try.
Good luck, let me know how it goes
Mel
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I remember the summer leading up to my son starting a specialst nursery, it felt like there was all this help and advice waiting there - but I couldn't get it until he started in the sept!
Other people have suggested contacting your health visitor - mine came out and visited me once a week for a few weeks just to make sure i was on the right side of sanity. We were very upfront about her visits and the reason I wanting them, and it helped just talking to someone who didnt need you to listen in return.
Have you come across home start? They a re a group that arranges for a suitable volunteer to come to you, usually once a week and 'do stuff' it can be in the form of looking after the kids so you can have a bath, escorting you to tescos so you'll have an extra pair of hands or just making the tea and listed to you moan. There is often a wait for this as they do try to 'match' you with a suitable volunteer, they try to look at personalities and similar experiences or professional knowledge. The vols are all just mums, mostly middle aged waiting for grandkids! I have one who is very nice. Some times it works sometimes it doesn't but its worth finding out about seeing if it is for you or not.
You could try to get a referal thru ur gp for some behavioural support in the form of a behav therapist/psychologist. I haven't done this so dont know how easy or not, it may be.
Dont feel guilty about using these services, you and your family are just as deserving as the next person. And don't forget yourself either, you must have time to get used to diagnosis's and the impact it will or wont have on the family. If you think you need counsilling - ask for it. Why not, it may help!
Keep reading on this forum, its great to use other peoples experience and knowledge. But do remember to keep in mind some self preservation - i spent too long reading about the troubles of the teenages being written about on here, before i realised that maybe concerntrating more on the next few months would make more sense!
keep in touch
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hope it goes well.
I've almost finished a hannen course, was v nervious about the video, but they focused it all non him and I was just in the background so it wasn't as bad as i thought.
am hoping to sign up on one in sept, child care depending!
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I would agree with bagpuss and get the school involved as much as poss. I don't have much personal experience of this as my son is only 3 and thus much of his upset and lashing out is in a similar fashion to a temper tantrum of any other2/3 yr old.
You said your son is at a mainstream, they should have access to the support from the nearest ASD specialist school and should be able to call in the advice of the behavioural people there. I know our ASD school nearby provides outreach services to schools (and possibly families) to support the mainstream children.
good luck
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NO
its a big problem atm, i don't mean just telling him off. If you use 'no' in a sentance that he picks up on there is real tears, bottom lips goes, headbutting and the world falls apart. Bless him!!!
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I'd follow all of the above advice and get them off the site, if shes an adult neices shes old enough to understand why this is important.
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I really hope you get some decient advice about this. My feeling is that it would be much better if it were possible to nip this in the bud before it becomes the 'norm'
best of luck
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We had decided that having another child would be reckless, we have a daughter 5 (NT) and a son 3 1/2 (ASD). There is a hereditary trait and our consultant gave us rather grim odds of having another ASD child, especially a son. So we gave away loads of our stuff and sold some other bits.
The thing was I was so busy justifying the decisiion it took me rather a while to realise that it was making me miserable! So number three is due in August.
Of course it will change the dynamics of the family, i remember looking at my son in the early weeks thinking, what have I done, I have shattered the relative peace and comfort that my and my eldest had. But now I look at them and they are fantastic together.
There is always the worry of leaving an ASD child with their sibling being mainly responsible for them as we go grey and ga-ga, but as life has shown me so far, you never know what is going to be thron at you anyway.
My sons teacher is the big sister of an ASD boy, and she has the most remarkable insight into families new to diagnosis, dealing with behavioural issues and with the asd children themselves. That is only there because of her personal experience which she has made a positive one. I only hope that my daughter is able to do the same.....and goodness knows what number three will bring to the family!!!!
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Best of luck no matter what you decide
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Its funny that you have found that reaction in, of all places, the hairdressers!
Sometimes people surprise you in the nicest possible ways! I'm sure it wont be the last time
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My little chap is v much the same as the others, we got a referal to a dietician to help us test the gf/cf diet he is on (gluten and caesin free to see if it alleviated any behavioural problems), any way, we had to write down a food diary for a week. At the end of which although his diet is VVV restricted, I was surprised how much he does actually eat. It may be worth a try.
We've also just put him on some vitamins daily, after a very non-helpful gp prescription I found that holland and barrat sell pink teddy bear shaped vitamins that are like a powdery tablet, he has his 'sweetie' once a day!
My son is 3 1/2 and I also have a daughter who is 5, and number three is due in august too! Bad timing with the weather heh?! It is worry about these habits being passed onto to other children in the family, but we are used to the idea that we are never q going to be a conventional family, so some oddities at the dinner table are prob the least of our worries!
btw you are welcome to pm me if you want to compaire swollen ankles and weight gain!
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You are right to put all of L's progress first, and dispite this non-verbalism don't forget what she has achieved reciently. She has done amazingly well!
I don't speak from any experience, but I would suggest that you keep her using and learning the BSL (as long as she is willing) it is a very natural language and a great form of communication which doesn't need any 'equipment' .And if being able to use this and express herself freely thro this takes some of the pressure off her it may be an easier journey back to speech for her knowing that she can take her time and continue with the BSL untill she doesn't need to any more.
It may mean that the family will have to learn some signing, which may seem like a daughnting task, but may well be worth it.
Best of luck
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I would send them the letter for noel, or at least a copy of it. Its worth a try!
Good luck
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According to the chap on there (who is an expert because he works in a senior school!) as parents we are happily drugging our children rather than deal with them appropriately and discipline them. Children are spending far too much time on the computer and the tele and should be banned.
I didn't manage to listen to all of it, but I think i heard enough to get the gist.
N e one manage to hear the phone in responses? I'd be interested to hear how many of the phone ins supported his views
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Well said hallyscomet, you've obviously been thro your fair share, as have many on here, but its things like this forum that can keep us going feeling we are not alone.
Bugbug - similally even if today was bad, tommorrow may yet surprise you.
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The small chap is nearly 3 1/2, he does now point at things in a book or on the computer screen as he likes you to label them. But This is a new thing, he certainly didn't point as a baby and this 'joint attention' thingy of them looking where you point, that still is a bit of a lost cause with him!
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The system fails to support many children, parents and adults, that is undeniable.
But I would like to thank the creators and all who use this site as they provide some of the emotional support which is so lacking. By giving each other information and tricks of the trade, or even just a simple
<'> we can show each other that we are not entirely alone. This doesn't mnean the system doesn't need to change and improve, but it does show each of us the importance of a site like this when we are feeling down. Lets ensure that we all use the support and tlc available online and help each other to ask for help when needed.
my heart goes out to the family
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I am lucky to have a great health visitor, who when i moved area came and visited me lots. We discussed how very few of my old friends had bothered to make an effort to keep in touch and she shared her opinion of freindships with me. It is advice I often go back to and think about in a similar situation.
Friends come in three varieties, freinds for a time, freinds for a reason and freinds for life.
As such if a freindship only lasts a summer, say, and turns out not to be what you thought of it, don't feel down on yourself about it. Take it as a freindship of a bygone era and move on. Don't let people treat you how you don't want to be treated just for the sake of a 'freindship'. Freinds will only respect you as much as you respect yourself.
So to all those who have been treated like poo, move on, head high and good luck,.
Like I say its something I am trying to practice, am not perfect at it yet, but am still trying!!!
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It is good to hear of people having an easier time than most.
We haven't done too badly either, but it seems that we have noly got to hear about the right places to ask about from other parents, which is what lead to his speech and language group and later his specialist nursery placement. But once we know what to ask for its all gone ok.
My auntie lives in emsworth btw!
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The little one is v into the cbeebies website, give him a day and he will fill it with, pointing and clicking. He goes thro different phases of which is best within the site, atm it is 'boogie beebies', oh and he likes me to dance along too!
He is also v into the video, but seems to prefere this if you sit with him and read your side ob the script of enact your part. Took me ages to work out why he spent one afternoon trying to get me to stand on him repeadedly, turned out to be the beginning of Ice Age. Have just brought it for him as we didn't own it and it seemed that was the only bit he could remeber, thought it might be best to get him passed that bit before we got a visit from social services!
My daughter, her latest obbsession seems to be throwing the biggest tantrum!
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my son does some signing too, I think any communication of any form must be well worth trying.
Well done to the little chap
Have you seen the 'something special' childrens bbc programme. I is all done supported by makaton signing, well worth a look to help you and your son learn some signs as you go further down the track
Bionetics
in General Discussion
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A freind of mine used the biotecnics company on her son, she initially went to get some dietary advice and came out having signed up for the whole lot!
The hair analysis has been problematic for them, the first showed such high rates of lead that it would only be possible if he was eating the lead pipes daily! They did think that the result was an anomoly (sp?) so took the information to the consultant pead they see (privately) who said whilst he didn't believe the results could ever be that high in a child without showing signs of severe lead poisoning, he has taken blood samples to check the levels of lead and some of the other heavy metals. I'm seeing her at the wkend to find out the next episode in the saga!
I am not against any kind of alternative, but this one was a very expensive excersise for my freind.
Have you thought about using the uni of sunderland for the ketones (sp?) testing for gluten and caisin? Its only about ?60 for that test. Would your pead or gp be able to arrange further testing for metals if you requested?