I'm sort of new

[jenkins88]

Hello, I'm quite new here. I've posted a few messges over in the b/d board and some of you came over to give advice and support - thanks for that.

I'm not sure if ds has special needs or not really. I've read hundreds of posts over here looking for some kind of similiarity between your children and ds, but although I have seen some posts that ring a few bells there is always something that doesn't fit.

Ds is 3y4m and at the moment is waiting for an assessment with a SALT. He was refered by a spcialist SALT at a craniofacial unit that he used to attend, who say's he has speach and language delays. She said that his verbal skills were at the level of a 2 year old, which I found very upsetting. He's aways been a bit slow at things, so I'm not sure if this is just another one of those milestones that he will eventually achieve, but just a bit late.

I don't have any concerns about autism, although I think if most parents read the critieria they could find an aspect of their child that fitted in somewhere. I keep hearing the tern global developmental delay, but am not sure what that means either and would have thought it would have beenpicked up on by now. DS has an appointment with the HV next week, so I'll see what she thinks

Hope you don't mind me introducing myself. I know that ds may not have any serious problems, but I've been lurking so much that I thought I really should say hello.

Thanks for reading

Hi,

My son was diagnosed with both developmental delay and speech and language delay at 2 1/2 years of age.

I would say to you that developmentally delayed children learn the same as everyone else; it takes longer for them to learn the skills but once they are there they are retained. In my son's case his fine and gross motor skills were affected to some extent by the developmental delay. What I have found helpful with my son over the years is to break instructions down into steps so that it can be easily followed. I can all too easily relate to how you must have felt when your son was diagnosed, I felt exactly the same. I will relate to you what I was told at the time, "it is not your fault that this has happened". I was also only told to really be concerned if DS regressed.

My son is now 6 and in his case the developmental gap has narrowed as he has gotten older. The OT that we saw at the beginning of the year thought that he was about 6-9 months behind. He has a statement at school which enables him to have a set number of hours of individual support per week and its done him wonders. I would strongly suggest to you that you look closely into getting your son a statement from the Local Education Authority for when he starts Infants in case he needs extra help in class.

Does your son see a developmental paediatrician currently?. My son has seen one of these over the years together with a speech therapist. He has also had an appointment with an occupational therapist (OT).

Any other questions just ask. Know all too well also how isolating this can make a person feel.

Meerkats

Hiya

global developmental delay just means delayed in everything

Hi Jenkins88. I was also going to ask if you have been seeing or will see a Developmental Paediatrician, essential in my view. And seriously consider starting the statementing process, don't be put off by HV or others saying its not necessary. If you apply then the people who are experienced and employed to make such assessments will be able to say whether that is so or not. It is the best way to get him extra help and the earlier the better. Good luck!

global development delay means a child is delayed in all areas of their development. My daughter has a global development delay, sometimes it starts to become a term 'learning disabled' as they get older as things are more apparent, but when they are young no-one knows how things are going to pan out. When she was your sons age she was in special school actually. But she got physio, OT and SALT, saw a devepmental paedatrician, got portage before she started school. Also it was important in our case to see an orthopeadic surgeon and have referal to orthotics as my daughter has physical problems that cause her physical delay. Also eye tests and hearing tests should be done. i am waffling, hello btw

Thanks for the welcome.

DS hasn't seen a developmental paediatrician. He has an appointment with the HV next week, so I suppose she will start the ball rolling if she see's anything wrong. I'm quite sure that in the past she has been concerned by DS development but I think I have probably brushed it all under the carpet. I have this awful fear of him being labelled and then never being classed as 'normal' again. I've been asked before whether she thinks he understands me and I've always said yes, but if I'm honest I don't think he understands much of what I say. Things like 'Where are your shoes?' and 'Go to your room', are just met with vacant stares, as if he hasn't got a clue. I see other 3 year olds with their mums and and they seem to understand quite a lot. I know Ishouldn't compare and for the most part I don't. I have gotten used to him being a bit behind with everything but I really feel that the gap is widening alot now.

I have always been concerned over his lack of interest in anything. He is still in a cot and has only ever got out of it once. He fell to the ground and really hurt himself so he won't try that again. We never went through the terrible two's. DS was just contect to sit in his buggy or chair and watch TV. He seems to lack the motivation that other kids have to explore his world and be mischevious. The only types of 'naughty' behaviour we had had from him have been more from him not doing what we tell him but I think thats down to him not understanding.

I hope it's ok for me to put all of this over here. I've read alot of your posts and know that many of you have real struggles with day to day life and I don't want to p*ss anyone off with these trivial problems. I just don't really know where we fit in.

I was wondering how far a child has to be behind before it is considered to be developmental delay? Is this a diagnosis or a label for when a diagnois can't be found?

Hi,

I would certainly address all that you have written today with the HV and don't her fob you off!!.

You may want to consider a referral to a developmental peadiatrician: if the HV does not suggest this then I would ask for a referral to such a person anyway. Your GP can also help with this if HV does not or cannot do this.

Developmental delay is a descriptive term when a young child's development is delayed in one or more areas compared to other children.

These different areas of development may include:-
fine motor skills
gross motor skills
speech and language development
cognitive/behavioural development
social and emotional development

The term developmental delay is often used until the exact nature and cause of the delay are known. The significance of the delay is often only determined by observing the child's development over time.

Let us know how you get on with the HV.

I wish you well

Would suggest you read this:-

www.rch.org.au/emplibrary/cdr/DevDelay.pdf

Hi Jenkins88 Welcome

My ds2 is only 20 months, but he has global developmental delay. This is a statement of fact more than say a `label' at this stage, because we are still in the midst of tests (genetic or otherwise) to establish whether or not he can be given a dx (diagnosis) - a syndrome or whatever...

I understand your concerns that you dont want your child to be labelled - perfectly understandable. But the thing is - if your child's needs are properly identified, then they are more likely to be properly met.

I dont think there is any chance of you p*ssing anyone off on here - I suspect we all know where your coming from - it is a difficult time when you suspect your child might have extra needs, but dont know for sure and this is a great place for support

Sending you lots of good wishes - let us know how you get on...

Meerkats, that's great that your Ds is now only 6-9 months behind. Is that across the board or just with his fine motor skills? Just out of interest, how far behind was your DS considered to be when his delay was first spotted? Was it a global delay or patchy?

I seem to remember you saying that the delay was more pronounced between the ages of 2-3, or have I got that wrong?

Oh thanks so much for being supportive. Your partly right about what I was 'getting at' when I said I didn't want to p*ss anyone off, but it was a bit more than that as well. I posted on other board about my worries over DS development and I had a response saying 'Oh I know how you feel, my DD was the same but now she's 11 and fine'. I was really reassured by this and then she said that she had concerns because DD didn't walk until she was 12 months, and I thought 'WHAT, thats not a delay'. It made me feel so excluded, like 'I wish that was all I had to worry about', so I was a bit worried that other parents of sn children would think the same thing about me. Thanks for the reassurance.

I spoke to DP today and he has admitted that he has noticed some things as well. His concerns seem to be more about physical delays like not being able to jump with both feet together or ride his bike. My concerns are more about him not being very interested in doing anything other than lining up cars or watching telly. But I suppose that's Dad's for you. DP is gutted that DS might not be the next David Beckham. We've agreed that when we speak to the HV we are going to ask for a referal to a Developmental Ped. I feel a lot better about it now that he knows how I feel. It's such a lot to carry around on your own.

Meerkats - thanks for the link. I can't remember when Liam reached his previous milestones, but he isn't doing any of the things that a 3 year old should be doing yet, so I think we definetly do need to be getting something sorted.

Merlot - you are right about the labelling. It's a horrible feeling when you're child isn't developing like you expected, but a diagnosis will help him achieve his potential. I have always had a feeling that my sister has problems. I can remember dysprxia being mentioned when we were young, but my mum refused to believe that anything was wrong and she never got any help. She just became increasingly frustrated and fell further behind at school. She never had any friends and now has problems with eating disorders and alcohol. It scares the hell out of me that DS would go through anything like that.

I'll let you know how our appointment goes next week.

Hi J88, this behaviour sounds familiar - we could never work out whether my ds understood or simply just ignored instructions, this was around the same age. Now we are at he (now 4)does understand but does not answer, we know that because he either does what he is told or takes on a situation.
We have a diagnosis of severe speech and language delay.
Like everyone else has said get the ball rolling to take your ds further than the HV.

Yogi - pretty sure that DS doesn't understand what we say. He had some lego stuff today and I said 'stack them up'. He lined them up and looked at me waiting for the applause. I said 'No, stack them up', and gestured stacking with my hands. So he lined them up the other way around. How often does your DS have SALT? Are you seeing any improvements?

Pages,

In answer to your questions:-

1. was bout a year behind when he was between 2 and 3 especially in terms of his speech. The six to nine months delay now is in relation to his fine motor skills.
2. His delay was considered to be patchy in nature although all skills were affected.

Jenkins88 - good luck with dealing with the Health Visitor. As previously mentioned don't take no for an answer and don't be fobbed off!. His Dad and your good self are both his best advocates.

With best wishes

Meerkats

Hi there, Your littel ds sounds eactly like mine. We are in the process of assessments. So far we have had a neurological paediatrician say speech and language delay, he needs lots and lots of s and L therapy. We then had an ed psych agree and then we had a community paed say asd. CONFUSED!!!! I know exactly what you mean about labels. You hope that you are not too sensitive but on the other hand you don't want them labelled just so it is convenient. Our ds appears o understand one word instructions but he could certainly not go into another room and find a given object. He has began private s and l and has been introduced to pecs which is good. The lea have so far provided 4 S and L sessions. DS 3.6 YRS.

Hi Shey - Do you think he has ASD? It has crossed my mind a few times with DS, but my gut feeling is no. A few things I read about the triad of impairments fit but I don't think enough does, IYSWIM.

The labelling is scarey for me. I keep imagining how I would tell my mum which is stupid. She already say's things like 'poor little sod', when she see's him and that makes me feel sad enough. I can't imagine what pearls of wisdom she will come up with if we get a DX.

I so know what you are feeling. I too have a gut feeling that he is not ASD. I hope that I am not too fixated about labels that I couldn't accept an ASD one if appropriate but I truly don't think he is. His non-verbal communication can be good and although from time to time he seems fixated on what he is doing I never have that feeling that there is a glass wall. I have looked at the triad system and he doesn't fit everything. Like you I don't really feel ready to discuss ASD with my parents, partly because I don't feel it is right and partly because I feel my parents would have their own old fashioned ideas of what that label means. Fortunately, I don't feel so concerned about my friends. I would love to hear more about your DS.

I meant to say that I also know what it is like to feel that your mum does not see your ds as a little grandson but mosre as a poor little stranger. I am very close to my parents and it breaks my heart when I see them struggling to have a relationship with him. Many tears shed privately!! Other people like his nursery teachers love him so it is hard that my parents who don't see him so often don't have that easy relationship!

Hi jenkins. I had similar concerns to you about my son. At age 3 he hardly talked. Just said single words and often in a meaningless context, wouldn't ask for things - just pull me over to them. Was very passive and 'good' as a two year old. Not toilet trained till 3.5. Blank expression and looked somewhat 'in his own world'. He was eventually diagnosed as autistic but only mildly so.

I am not suggesting your son is autistic but don't worry about labels as this can often be the route to extra support. He does still sound a little young for a diagnosis (my ds was 3.10 when he had his initial diagnosis and the more formal one made 5 months later). He was a bit late to get extra support at nursery but is receiving this at school. He also had a diagnosis of a semantic pragmatic language disorder but even then has come on really well in his speech (he is 5.10 now BTW). So a diagnosis need not mean bad news ...
anyway will stop blabbing on and welcome - hope you get the answers you need.

I don't think a DX of ASD would worry me any more than any other DX. DS will still be the same child after a DX. I just don't like to think that people will start to describe him as 'the autistic/dyspraxic one' IYKWIM.

My mum definetly doesn't treat DS like her other grandchild. She's so proud of my niece but I sometimes feel that she's uncomfortable with Liam. There haven't been any offers to babysit for 2 years, but she'll drop everything for my niece. She won't accept that anything is wrong with DS, but I think it's because she doesn't know what to say to me. When he was born he had sever plagiocephaly (mis-shapen head). Obviously I was worried about it, but she always said she couldn't see it. Even went so far as to tell me that the problem was in my head. When he was refered to a craniofacial centre, who conrimed that it was plagio and classed it as severe, she said that she had noticed it but didn't want to upset me by mentioning it. For monthsfater this she kept pointing out children with big ears/noses and saying 'Well at least he doesn't look like that. It wasn't helpful and just made me feel 'what a horrible world that I've brought DS into, where people talk about children like that'.

All I know about DS at the moment is that he has delays in quite a few areas of his development. At the moment I'm feeling ok about that.

My mum is the same. She showed no pleasure in the fact that I am pregnant (3rd time) and even said to dh "what if its a boy and it has autism". I've developed quite a thick skin over the years.

Hi Jenkins. Welcome to the SN board!

Thanks CT

just wanted to say welcome