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3 year old with asd and sld

(21 Posts)
jess1975 Wed 18-Sep-13 19:47:06

Hi - yes he is very passive at times. I would describe him as under active rather than over active. We have the ball popper which is something he can enjoy independently for a minute or two. He also loves to be swung around. I was chatting to my friend today whose little boy attends same nursery and she says she clearly remembers the head teacher talking about aba and I also remember a conversation where he was telling me about trying to find a child's motivator and in the end it was turning a light switch off and on. Will try to find out more about this. He's pulling us by the hand much more frequently which is a real positive step as before it was only to the fridge. He keeps taking me to the door but obviously I can't take him out all the time so this can result in a meltdown with some head banging. He's also using our hand as a tool when he can't quite reach something. He's such a special little boy and every small skill he achieves means the world!

AgnesDiPesto Tue 17-Sep-13 10:23:29

Is he quite passive? We had light up spinning tops, a ball popper toy where balls shot out (?tomy). We found ds needed toys and rewards with a bit of va va voom to get a reaction. And swinging him around or upside down was a favourite reward. Jack in the boxes didn't cut it. He actually hated sensory rooms. The first website to catch his imagination was poissonrouge.com which is free and very cause and effect.

Weller Mon 16-Sep-13 14:47:44

I would also add that as the budgets have decreased i have found the word severe used more and more mainly as a word to satisfy the non medical trained gate keepers. But be careful as this is double edged as yes it opens doors but in the future it can work againt you. DS 2 paed will not use the word severe in regards to LD as she believes it gives the education/la justification to not strive for your child. Ds2 has never spoken a word but no salt has ever said he will or won't talk the most was that he may communicate through a device in the future.
You can buy protectors for iPads I have a tabtoob it has survived the fall from the top of the stairs. He enjoyed the sensory apps to begin with, he liked art of glow, he also liked books, not so much to read but the sweeping of the pages the cause and effect of it.

Toni27 Mon 16-Sep-13 12:50:49

My son was inconsistent with his verbal responses at first too he had days where he was really responsive and other days where he was completely not interested, but as he's got older he uses words every day and he's still learning his language slowly but surely xx

AgnesDiPesto Sun 15-Sep-13 22:59:14

DS was just the same, really he was at 3 he was very very similar to what you describe, looked right through us too, zero play skills. The SLT also told me not to expect him to speak again. SLT also could not get DS to do anything for her. Some SS do get good results, but for DS it was definitely the use of rewards that motivated him to speak and learn things. Teaching him to imitate was the first thing ABA did and that unlocked a lot. Agree the light toys etc are great instant rewards. It really varies where you live but honestly DS had 4 years of NHS SLT and she never taught him everything, even when his learning with ABA was really taking off. She just didn't know how to engage him, she had clearly never been trained how.

jess1975 Sun 15-Sep-13 21:54:40

Thanks again for replies. At times he has said "go" for bubbles and balloons etc but its never ever consistent and this has also been noted by the salt. In her report she says he has fleeting interest in toys offered and tends to wander round the room with no purpose. He's just so unpredictable. He has certainly said some single words mostly echolia. Has never used speech to communicate and may say a word a few times and then he completely forgets it. We can't get excited about new words because chances are we won't hear it again. It's so frustrating because it must be in there somewhere it's just finding a way to unlock it and retain it in his brain. We did have a private salt who has said she believe he will be able to talk one day but thinks it will only be to get his needs met and he will probably never have a conversation. His paed has said he has low functioning autism given his learning disability. Was chatting to the ot at his nursery recently and she has said she will be taking him for ot on a one to one basis but the other five children in the class will be able to do group therapy. Can anyone recommend some apps for the ipad, to date he has no interest in tablets etc. If you give it to him in his hand he would just drop it. Some of the children have them on the bus to keep them occupied on way to school but my wee man is just happy to look out the window. Your posts have given me tremendous hope and definitely some ideas for things to do at home. We've had some good news recently as he has just been awarded hrm indefinitely. I had heard it was very hard to secure so was surprised to hear their decision so quickly.

sammythemummy Sat 14-Sep-13 20:36:50

Thank you Weller

Toni27 Fri 13-Sep-13 22:29:18

My son sounds similar to wellers son with the speech he's 4 and a half now he has asd, my son was like your son when he was age2 to 3. We had a lady come out once every two weeks organised by our salt, she brought a whole suitcase of tricks with her to get some words out, she worked really hard with him and got a word out and once he had a couple of words he realised that using speech he could get what he wanted, that was a big motivator for him, his speech and understanding of language is still limited but it is totally improved since he was younger he talks a lot, his talking is improving all the time and he can understand lots of what's being said to him now. Hope that makes u feel better, there is hope, I remember thinking my son would never speak and my husband still has to remind me on bad days of how far our son has come, my fears and worries have never left me about how much autism is going to impact my sons life but honestly I would say for us, age 2-3 or even 3 1/2 was so hard compared to now. I looked into aba but never did it, but I read loads about it and tried to take something from what I was reading, one thing we did do on a complete whim when our son was 3 was to take him to cranial osteopathy, I swear taking him to that did something to him that unlocked something in his brain, I absolutely recommend it, he wouldn't communicate to us and he wouldn't make eye contact, but he had cranial on the morning and y the night he was making perfect natural eye contact and babble at us, it may have been a coincedence but even my husband whose a complete skeptic agrees that something amazing happened that day, it cost us £50 and was the best money we have ever spent, but of course that is our son and what works for One won't necessarily work for another. The speech lady who came to our house after that was bringing spinning light toys and saying ready steady go, then putting on the toy, our son loved it, she did it again and again, then said ready, steady and then waited fr him to say go. And he did it! And that was the start of his speech, before that all he could say (or scream) was NO! She had the light toys and also she had wind up toys they were good motivators cos they were all instant, quick rewards. She taught him to say I want, then we worked on nouns then we moved to verbs. Like I say she was every two weeks for a few months and I worked really hard to build his language in between visits, I'm still working hard now it's a long road but m sure you will make a breakthrough, sorry I've wrote such a long rambling reply but I read your post and hoped I could let u know that there is hope , best of luck xxxx

Weller Fri 13-Sep-13 22:14:52

Ds2 loved to post, we incorporated that with his learning of pecs for food. Like your ds he would take me by the hand for food and drink and we would post a photo of milk/biscuit in the postbox then he would get what he wanted. Instead of posting letters we laminated pictures of the family and key words for him to post, we where never sure if he took the words in but like your ds he was hard to engage so took any opportunity for language. At three we bought his first ipad and he took to that and still does.

jess1975 Fri 13-Sep-13 20:42:18

Thank you everyone for your kind replies. ABA certainly seems the way to go. It's lovely to hear positive stories but also need to stay realistic. My ds cannot yet play constructively, he just mouths everything in sight. The only real interest he has in toys is of a sensory nature. He loves posting activities and this will keep him engaged for a minute at times. He still cannot complete simple four piece inset puzzles and will try and put one piece on top of another. When we first started this process the salt from the local childrens' centre came out to the house (she only works with autistic kids) commented on how difficult he was to engage. She had a jack in a box and my ds completely blanked her (basically looked through her). The school he attends has an excellent reputation and we fought hard to get him a place as there is an sld provision just up the road but no where near as good. Good to chat x

Weller Fri 13-Sep-13 18:20:23

Sammy single words at 3 1/2, starting joining words just before 4 then pretty quickly full blown sentences although he has always still struggled with speech. The paed who Dx used significant learning difficulties with her Dx although with DS2 his statement says SLD. I know those who did early bird with myself those who had non verbal children they now all speak apart from DS2 so at three it is still early.

sickofsocalledexperts Fri 13-Sep-13 17:41:50

I too fear the SALT is going to do Intensive interraction, which is utter drivel imho. Another vote for ABA.

Moondog - is there any kind of "easy, first guide to getting talking via ABA for non-verbal 3 year olds?". Bet you could write it, if not!

Jess1975 I am going to send you an article on my early struggles to get my boy talking, will PM it,

AgnesDiPesto Fri 13-Sep-13 15:24:48

I think they probably mean intensive interaction
Research Autism currently say it has insufficient evidence to reach a view on effectiveness here
If you google it lots of info will come up.

We were told very firmly that the professionals could not assess whether my son at age 3 had LD on top of his autism (by LD I mean low intellectual function, usually described an IQ below 70), because he did not have the language or ability to follow instructions, they could not test him.

I don't want to give you false hope, but I doubt very much they can make this diagnosis at nursery age for a non compliant child with no communication, there is no way of testing his IQ until he can communicate what he knows. It used to be thought no language = low IQ but its not always the case. There are non verbal adults who write novels and films. eg google carly fleischmann.

DS has quite severe autism and had no language at 3 except for yes and no (he previously spoke in sentences and regressed). He would pull me to fridge exactly the same, almost no interaction with me otherwise.

We started ABA at 3 and he did start to speak again. It was not the words were not there he had stopped using them. It was much harder for him to learn language second time around. He in now 6 and uses phrases but not sentences and there are large gaps in his language. He still only speaks when he really wants something or is rewarded for speaking. Very occasionally he will comment on something. His language will keep improving I am sure. Its been very slow but steady progress. But he can read well above his age level, his memory is amazing he already knows his times tables. His IQ was scored at 90 after 6 months of ABA and I am sure if we tested him again it would now score much higher as he can now show what he knows.

So while you should be prepared for the worst scenario, you should not take this diagnosis as set in stone. Professionals do not know all there is to know about autism and often get it wrong.

ABA is worth looking into. It doesn't work for every child, but it has a better evidence base than intensive interaction. It is expensive and we had to fund it for a while and prove it worked before getting it on the statement.

I do think a significant number of children get put in the SLD box without any real evidence to support that so you should be wary. I remember at the diagnosis meeting the Clinical Psych told me he could not rule out SLD. All I could think was that DS was really smart because in shops he would spy the lifts and push me round a corner away from the lift, make me stay there and then leg it as quick as he could to the lift before I could grab him. I just thought how can he have SLD and be so cunning. Sometimes you have to trust your instincts. Lots of children don't make progress not because they have SLD but because they have poor quality intervention.

I don't know much about intensive interaction but I would push for interventions with a proper evidence base every time. Often LA SS use interventions which are cheap rather than ones which are effective. My son's ABA package cost 3 times the cost of a SS school place (we had to go to tribunal to get ABA), but my son has made good progress and most of the children in the SS have not.

Don't be afraid to challenge and try other things out of school, especially if you don't see progress with their interventions. If there is no progress they should try a different approach like ABA, not just assume the child can't make progress due to SLD (although obviously that is the case sometimes)

sammythemummy Fri 13-Sep-13 15:13:20

weller when you say he spoke age 4, do you mean his first words or full blown conversations?

Weller Fri 13-Sep-13 10:29:36

Both my boys had similar DX at 3, one is nearly a grown man with a future of a levels and hopefully university ( he spoke at 4) the other is 8 and non verbal, limited understanding (maybe 30 singular words) and still in nappies. I have always tried interventions and done research. I have used ABA with little impact on DS2 but would of loved to have used it with DS1 as it would of suited him. I am still open to interventions and next maybe a return to ABA for help to use his alternative communication device. You need to make sure that the interventions are that and not jargon, I remember a fuss being made about intense interaction to find out that meant 15 mins 1:1.

manishkmehta Fri 13-Sep-13 08:47:42

Be strong. It's so difficult when you start on this path. However, you will meet many people on your journey and hopefully learn a lot. The key is to start requesting all the help your child needs. If the statement process has started then that is positive. If not then make the request quickly as it takes 26 weeks to complete. Aba has worked for us but might not be for you. Talk to as many parents as you can and get in touch if you need help. Good luck best wishes Manish

jess1975 Thu 12-Sep-13 19:21:59

Hi sld is severe learning difficulties. Not sure what intense communication involves just yet but will post when I get further information.

hazeyjane Thu 12-Sep-13 10:23:26

Yes I would be interested in 'intense communication therapy' - has his SALT told you what it entails?

sammythemummy Thu 12-Sep-13 10:21:25

Is SLD specific Lang Disorder?

Sorry I dont know anything about intense communication therapy but it sounds positive?

Dev9aug Wed 11-Sep-13 22:33:04

We can certainly relate to this. I have a 4y old with ASD. I suggest you look into Applied Behavioral Analysis(ABA). I am sure that the nursery are doing a fine job, but in our last area, they are not a patch on what ABA can achieve. Unfortunately you do have to pay for it as it is private.

Also look into dietary interventions and supplements. Some of the biggest gains for us have been through these.

jess1975 Wed 11-Sep-13 21:21:55

Hi my ds has recently been diagnosed with asd and sld. He has just started nursery in special school for children with sld. I'm feeling quite sad as most of the other children in his class can communicate a little through limited speech, makaton or pecs. At the min the only thing he will do is lead me by the hand to the fridge for milk which he loves. He has significant sensory processing difficulties also and his teacher was telling me today that he had been taken to the quiet room for some tacpac therapy. The salt has said she is going to start intense communication with him. Does anyone have experience of these therapies? We're so thankful for what the school are going to do to help our ds but it's also just beginning to hit home that our son's disability is very serious and he will probably never be able to live an independent life. I'm still grieving - this time last year our journey was only beginning. There is lots of information online for asd but not for sld. Can anyone relate to this or share a positive story.

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