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ash1990

1 step forward 3 back :(

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well yesterday my child worker decided it was the correct thing to do to refer my little boy for assesment but then spoke to my health visitor and she said no

we stuck now coz its her that needs to refer him... what to do now im at the brick wall again!! got so many people telling me different things x

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I was once a troubled little boy, went through very hard times, but my familly never gave up on me, and now you have me at 22, and conquering every challange that comes into my path. One day your son will make you prouder than you ever thought possible, just never give up. It won't be easy, but the reward will be so worth it.

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aww thank you your story gives me hope, im just so fed up off people not listening and basically judging me because im a younger mum, and hes my first so they just fob me off.

im so pleased your such a strong person now =) xxx

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im so pleased your such a strong person now =) xxx

 

And one day your son will be too. Just rember, peoples opinions on you arn't worth a damn, beacuse they have no idea what it's like to be in your situation.

 

 

Rise above ignorance lol.

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Hiya

 

Is there another Health Visitor in your practice or only the one. My HV referred my son to the Paediatrician but I could speak to other members on the Child Development Team prior to my son's assessment too so you could possibly seek a 'second opinion'. The fact is that you and the child worker both have concerns and I presume that the child worker sees your wee boy more often than your HV? That's normally the way... If you can't speak to your HV about this could the child worker?

 

Has she given reasons to you as to why she feels a referral isn't necessary? A 'I don't think he requires referral' is not good enough. She should be happy that your child's development is no cause for concern and that he is meeting his 'milestones' within acceptable times. Those times really vary as some kids just naturally don't crawl, walk or speak as quickly as other children do. However, with something like speech development, normally children develop in a 'typical' way. I can really see the difference between how my daughter is learning to talk and how my son was at the same age (he has a quite pronounced speech disorder) so your HV should be looking at things like this.

 

Things like not 'referencing back' to mum or to other people who speak to the child might be an indicator that your wee boy is not developing 'typically'. What this is could include not looking at you when he wants something or gives you something. My son at your son's age would 'lead' me to things he wanted instead of pointing at them. Some common indicators are lining up objects (my son also balanced objects), 'watching' parts of toys like spinning wheels and lack of 'imaginative' play. For example, my daughter at 22 months old 'pretended' to make a cup of tea and gave it to me to drink and toasted me some toy toast to eat. She accompanied the pretend eating with 'Mmmmm' noises. My son never did this then and now that he does he does he follows a similar 'pretend' sequence of boiling an egg or putting a cake in the oven each time (and variations on a theme). He says 'Mmmm' primarily because he has copied his sister.

 

Keep at it. It's hard so get as much support as you can. If you can get someone to accompany you next time you go to see the HV then this might be helpful.

 

Lynda :)

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hi, my health visitor said because she heard him talking she doesnt think he needs it, my childrens working has rang HV and expressed her concerns

i trust her judgement as her two boys live with asd and she stayed for 3 hours to watch dylan not 20 mins so she seen more of what he is like, he is having his

2 year development assesment on the 29th of jan and HV said if anything flags up she may think about it.

 

he does speak sentences but the child worker thinks he is just parroting me as he doesnt say juice please when hes thirsty just when i tell him to say it, and the things he does play wise are thingsi do with him all the time,

he doesnt laugh when hes playing with toys or in games such as peep bo, he does give eye contact and cuddles but on his terms.

i dont have other children but my friend has a little boy 4months older then dylan and u can have a full conversationwith him and have been able to for a few months.

dylan did not start babbling till be was 9 months ish so this is were my concerns started really xxx

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TBH, it sounds like your HV has very limited knowledge about children with ASD can present. What you are describing does sound a lot like echolalia which is when the child 'parrots' back what you say and also phrases from TV and other sources. My son spoke the entire introduction to his segment of the school play he was in 2 days ago. He was amazing, word for word and correct inflection and everything but it was an exact COPY of what he'd heard in rehearsal (his teacher was meant to do it). This may LOOK like his speech is nothing to worry about but at home if he wants something he still says 'Do YOU want a drink' instead of 'I would like a drink'. Children with ASD can appear like they are using spontaneous speech (when they are a bit older) just by virtue of the fact that they have so many 'pieces' of information to call on to use but it can still be echolalia!

 

Even if your HV does not refer for assessment meantime you should be getting offered Speech Therapy and this professional can give proper comment o whether his speech is developing normally or not.

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thats what dylan does the things hes says are things hes said from the start like what is it, juice please ninner mum dad mamma, loubie sit (thats thedog) but they are things iv always said or try and

make him say, he does not just say things that he hears once or twice and to get him to say names i have to say come on lets shout daddy,

she does seem to be very much the book says and it is really getting to me because all i hear from people is this is your first child and trust me you do not want him to live with asd!! and i say i no i dont want him to have it but u have to face the facts and i would sooner no sooner rather then later. so i can get the help in place that he needs.

do you think im expecting tomuch with him being so young? xx

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We had same problem with our old HV, she wouldnt listen to my concernes and saw him for 5 mins at a time and said he was fine! Then after 2 years of me telling her something was different about Jack she decided to do a home visit that lasted 45 mins, and then she saw what id been seeing for 3 and a half years!! Just dont give up, in the end people will start to listen and will see for them selves what your trying to tell them :) good luck

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i think the earlier official assessment/diagnosis is pushed for the better outcome & progress is better on to manage coping skills along the way growing up and not shocked out the blue like me by accident in your early teens turns world on its head upside down and takes ages to adjust and accept your life around it with so much powerful emotions giod luck xxx your son needs you to be strong fight for him! Keep it up! stages my mum had to force the battle/ fight with dyspraxia diagnosis but never gave up im gratefull thankful so keep on going as will be worth it and so will your son and his future be more steady stable balanced hopefully he understand himself more and more knowledge behind who he is and yourself!

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late assessment/diagnosis so crushes impacts your life and takes so much effort and work to keep on top of and sink in! Can be scary confusing time! ;c so best in my personal opinion grow up with it! X

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you know your son better than anyone dont let anyone tell you any different or try swade you otherwise as you with him the most and mums natural instinct go with it as probably right! & my mum was called overprotective by SENCO at huniors school & peadtrician but still followed through determination

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As Smiley says, early diagnosis is really best in order to get the support that you and your son needs. However, there is a lot that you can do as his mum prior to diagnosis. Keep right on speaking to him, reading to him, showing him things and pushing for help from professionals. Your little boy has the capacity to learn and just because you don't see progress necessarily, that doesn't mean that progress isn't being made. Bear in mind that your little boy might have a harder time understanding instruction or spoken language in general so you might have to start using short and very clear sentences. This will probably help in terms of 'communication' which is not all about speech.

Edited by Lyndalou

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As Lyndalou said "just because you don't see progress necessarily, that doesn't mean that progress isn't being made." I found/find this to be what happens with my son. It doesnt seem that he's taking anything in, and for ages there is no progression, then suddenly he progresses really fast in one area such as speech. He went from being 18 months delayed with speech and understanding at 2 and a half to almost age appropriate by 4yrs! So he went from the speech level of a 1 yr old to a 4 year old in 18 month. Totally amazed!

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wow thank you for the support and kind words we use makaton with him i alwaya have luckily even tho the HV said not to... so im just going to reenforce my words with signs, do u think this is the rite thing to do. i

will not give into her and will get him help that he needs to make him able to live his life to the max. one thing sshe says is coz he walked when he was 1 is that

children either do one or the other fast walk or talk and the other one takes longer but its been a year now and we still not got very far speach wise. xxx

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oyeah iv also been told that they wudnt do nything with him coz of his age and they dont normally assess till the age of 5 but this is untrue right? xx

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he is 2 in january so i no hes young but i used to work with a boy who was 3 and had been assessed, some professinals just no how to work you i think.

i mean i new u cud before 5 but she got me doubting myself xx

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Yea I think they try to fob you off, I was sooooo relived when my HV finally listened after 2 years! Felt like I had hit a brick wall at points, and nobody was ever going to listen. Jack started mainstream school in october and that has helped a lot, because the teachers have noticed his behaviours too so I have back up. He was put on the SEN regester within 4 weeks of starting school and had an IEP in place after 5 weeks. I struggled with him for ages without people listening, but now they finally are. It took a long time but getting there now so hopefully diagnosis soon and he will be ble to get the help he needs. Is Dylan in nursery?

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he is 2 in january so i no hes young but i used to work with a boy who was 3 and had been assessed, some professinals just no how to work you i think.

i mean i new u cud before 5 but she got me doubting myself xx

I really think your HV is giving very flawed advice. I flagged up the problems with my son's speech before he turned 2 and was offered an assessment shortly afterwards by the Paediatritian (which I initially turned down). I chose instead for him to be seen by a Speech Therapist with contact with the Child Development Team. His assessment was about 6 weeks before his 3rd birthday. I strongly suggest that you see if you can speak to someone else but as I said before (bearing in mind that a lot of development can take place between 2 - 3 yrs old) as long as you stimulate him he will learn during this period.

 

If you feel that makaton is helpful then do it. Being able to communicate will greatly relieve frustration. I would personally use language too as he quite clearly has speech that can be built on. If you think that the makaton is being detrimental to his understanding in time then you may have to rethink but it's really your call. For a short while we used the PECS system with my son to reinforce the spoken language and to help him understand the structure of his day.

Edited by Lyndalou

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aww thats really good that your getting help and moving forward =) he isnt at the min no im a little scared to leave him and i no this might sound silly but im worried they wont 'get' him and understand his way of communicating

were as i see and hear him everyday exceptnwhen im working and hes at my mums so i understand him. we go to playgroups though and i have friends with children so he gets time with other kids (not that he enjoys it haha) xx

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yeah i speak more then i sign its just useful i find to have absort of back up plan, i think im going to swap HV we have seen a speach and language therapist about his eating but got told they wudnt be able to

do much for his language as he is already saying sentences...

 

i have resorted to filming him and his behaviours/speach to show her but still she just brushes it off xx

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We first saw SALT for feeding problems too when he was about 11 mths. but then it was obvious that the speech was also delayed so he was kept on and given speech therapy once a week at first, then sent to a speech and language unit in a school which is when he progressed really fast. Has Dylan had a proper speech assessment with SALT? I think its a good idea to change HV, the one you have doesnt sound very good at all and it would be useful to get a second opinion from another HV. Cant the GP refer you to a paediatrician? Thats how Jack was referred originally.

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yeah i speak more then i sign its just useful i find to have absort of back up plan, i think im going to swap HV we have seen a speach and language therapist about his eating but got told they wudnt be able to

do much for his language as he is already saying sentences...

 

i have resorted to filming him and his behaviours/speach to show her but still she just brushes it off xx

It's not going to hurt to have 'evidence' to show to any future professionals you have contact with!

 

Again, it's not true that a Speech Therapist would not be able to assist if your son has a speech disorder. He would need to be assessed for this in order for the Speech Therapist to tailor therapy to his needs but it is still very much part of the help your son might require.

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no hes not had a propper speech assesment hes not seen them since he was about 11 months and he had not long been babbling then, so they said give it awhile but then iv never heard or seen from them again. and when i ask that was the answer i got

i dont no wetha he can or not i will have to speak to him, i can understand wanting to do his 2year review first but the time it takes to get an appointment she will have time to do while i wait to see the paediatrician wudnt she? xxx

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im going to go to my child worker tomorrow and see about SALT see what she can do for us thank you evryone you have pit my mind at ease i felt like i was going mad xx

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Glad your feeling happier about it all, just dont give up! I know its hard work having to argue your point but it eventually pays off and your son will get the help he needs :)

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I know that feeling well! I thought maybe I was mad and making it all up, obviously the speech was a real issue but with the other problems he was having I did start to wonder if I was being over the top about it. But now the school have agreed something is going on and seen what I see and backed me up, I feel so much better about it all. I'm not imagining it, but when the HV kept saying he was fine it made me think I was. So glad I didnt give up. You know your son better than anyone else, so if your concerned keep on at them until they listen.

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well just looked online and found out a 2 year old shud no at least 50 words be putting sentences together like 'daddy kick' no 5 parts of there body and some colours...

how on earth that HV is not concerned i do not no....

he nos words but they dont mean anything to him and at the most he nos 15 thts pushing it, does not no his body parts sept his nose coz i say get ya finger out ur nose haha,

sentences are copied and have no understand as to what he is saying he would say 'dylan kick' as that be what he heard from us and colours pffft not a chance yet...

why dont people listen nd when it ###### to his 2 year review it will probs say things like can he say a sentence... well yes but the question is dus he understand it.

 

sorry if im ranting im getting all worked up as it is very obvious to me that there is a speech prob xx

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Does it have to be the HV that reffers him to SALT? Have you seen the GP about it, or would GP just tell you to speak to HV? Where i live there is a toddler group for dylans age called chatty monkeys and its run by a SALT. Is there anything in your area like that? It could be helpful

Edited by Noskcaj86

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i think my childrens worker can send him to SALT i have tried before to speak to doc and he sent me back to my HV its like no1 wants to make the move and be responsible for refering him xx

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I would go with your gut that being the HV doesnt have a clue about your childs behaviour.

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@ ash 1990 - everyone assumes that communication involves speech but is very deep & involved ,my mum used to keep a notepad full of developmental stages i wasn't meeting like others which was crammed and peadtrician & SENCO discussed my case and decided not enough there to officially assess and diagnose dyspraxia (previously known as Clumsy Child Syndrome) SENCO judged my mum negatively as being over protective mum!

 

i think it's very good,productive idea to keep notes/records of late/behind development stages due to normal as this shows there are obvious issues that need investigating/addressing on further basis! it helped back my mum up as with physical evidence as struggling with physical activities/tasks such as doing my buttons up correctly on school shirt and having shoes on wrong feet getting confused of what shoes go on what feet! so frustrating! just keep up with note taking and records! keep pushing/forcing them to listen sometime it's only way for issues get looked at properly! luckily my mum chased it up effiently and wasn't taking NO for an answer or walking away freely!

 

good luck once again to you both! hope your son's further is bright! p.s you shouldn't feel bad guilty it's your right as HIS MUM have it investigated/looked into/chased up!!!

 

XKLX

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* professionals like HV's etc think they 'know it' attitude been to university or read a book think that's it they have proper experience of ASD condition the parroting like repeating sentences is common within ASD conditions even in A.S /HFA higher end of spectrum also can occur on it's own ( echolia) i don't even realise i'm repeating over & over but others do like parents say you've said that just a second ago!

 

XKLX

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My 2 yr old, almost 3 (in feb) is hardly talking. But its totally different to how Jack was, Jack had other delays and unusual bbehaviours from an early age where as my 2 yr old hasnt. He is delayed with his speech but nothing else. He uses gestures like pointing at things he wants which jack didnt do. He babbled from 5-6 months, Jack didnt babble until 2yrs. He understands what im saying to him, jack didnt seem to understand spoken language until he was over 3 yrs. And he can follow instructions, which Jack still struggles with now at 4 and a half. Jack seemed deaf as a baby/toddler and had a few hearing tests but they came back normal, he still acts deaf at times and also is mute at times prefering to grunt or not respond at all, im not sure why this is but i want to mention it to the paediatrician when we go in Jan. Anyway, what im trying to say is that delayed speech isnt usually an issue on its own at 2yrs, but when there are other language and understanding delays involved its an issue. My HV thinks my 2 year old is being lazy, and i agree. There is such a big difference between him and Jack at the same age. Jack had/has other delays and problems along side speech with motor skill delays, still ion nappies now, feeding problems from birth, hyper active, sleep problems.... ita a long list. My 2 year old doesnt have these other delays so there is a big difference. I hope you get listened too soon, keep on at them! x

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