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has anyone disagreed with a development assessment?

(20 Posts)
WrongWayWound Mon 05-Jan-15 17:46:06

Dd is two, a recent report has referred to her as "mild developmental delay"

She was slow to meet motor milestones, but I'd say now age appropriate. Can run.
I wouldn't disagree with mild speech delay, but otherwise she can scribble etc. Poor language comprehension but plays and follows gesture.

I see a bubbly bright thing! She has had medical appointments and the label has followed from early delay. It's tagged on with other concerns.

Does historical delay normally follow? Or am I not accepting it? Aside from communication she is now on milestones.

MrsTawdry Mon 05-Jan-15 18:25:02

Don't listen to it as a label. See it as nothing more than words to help DD in her education during her early years.

Many children could qualify for "mild developmental delay" but don't for whatever reason get that diagnoses...but manage more than well. x

Millionairerow Mon 05-Jan-15 22:40:37

I was told it is all basedn what the health visitor sees at the time of the assessment. Was your child tired or bored? My assessment was ok but she had it at 2 years 5 months... A bit later than recommended 27 months and toddlers can develop quickly from week to week. My dd however was given an age of 24 months for visual/speech because she didn't describe situations in a book. But she had other things that were more interesting. I got told not to worry unless certain development milestones weren't hit by about age 4. You will be the one to know. I would be glad the HV is keeping an eye out as my dd didn't have any development checks at all due to NHS cuts. Hope all is well.

MrsTawdry Mon 05-Jan-15 22:50:55

OP hasn't said it was a HV who assessed her child. I don't think a HV can diagnose a developmental delay.

lougle Mon 05-Jan-15 23:33:02

I think it's early, at two, to mark the children with delay who will go on to catch up and the children with delay for whom the gap will widen.

DD's paediatrician at 2 years 9 months had 'high hopes' for DD. I don't know what 'high hopes' meant -it wasn't explicitly outlined- but now, age 9, she's around about the developmental stage of a 4 year old, starting to read some cvc words, still unable to say some speech sounds, can run but her gait is unsteady and uneven, etc.

Her delay when he first saw her ranged from 6 months in her strongest area to 1.5 years in others. Now it's around 5 years.

She goes to special school and a team of people have worked tirelessly to get her to where she is.

Tbh, a 'mild delay' could mean anything -it depends who said it and what they were assessing her against.

mineallmine Tue 06-Jan-15 00:21:10

I think these developmental milestones can be useful for catching real problems BUT children are not all the same and do not follow the same developmental track at the same pace as all other children. So, say your child is not sitting at 6 months, it might be good to have a look at general muscle tone; if she's not talking at all at 2, it might be good to think about an intervention to help her speech along.

My dd was adopted from an institution at 14 months and wasn't even babbling. She had her first speech assessment at 2- the SALT agreed that she was behind but said she'd catch up, didn't need therapy; at 4 she had her final assessment and was declared 'average' (a lovely word!!) in her speech not having had any speech therapy. The SALT was right, she needed time to catch up.

If your gut is telling you that your dd is fine and you know it's not your mummy-rose-tinted-glasses, then ignore ignore ignore.

WrongWayWound Tue 06-Jan-15 10:16:25

Thanl you for replies.

Its a range of assessment. A hospital pead at 8months (very mild cp), developmental pead at 23 months, hospital pead at two and gp.

All got rather mixed up! Gp noted floppiness at 6months, pead at 11 months very mild hemi, recent pead poss seizures. Development pead was recent and postive, spoke of speech delay (about a year on comprehensio) but was postive about motor, seemed quiet surprised at her normal motor skills. However the gross motor delay has been quoted on a hospital letter, developmental pead hasn't written to me. Hospital was about possible seizures, still open ended.

She has glue ear and loss, could now be fine with a speech delay from that! I'm not closed to delay, but with the hospital it feels like they never drop a diagnosis and don't look at her now. In the last year and a half she's hugely come on from a slow start. She's second centile for size which is also a bit of a motor skills barrier, she can do stairs and ride ons if small enough.

MrsTawdry Tue 06-Jan-15 10:28:36

I think you should visit the Mumsnet Special Needs boards Wrong there are many parents there who've been through this and can give you so much experience and help. The CB will surely have played some part in this...mild is good of course but I would be surprised if it hasn't been part of the issue in general. It sounds like you're well on top of her development and doing a great job of keeping an eye on things.x

lougle Tue 06-Jan-15 11:09:47

Honestly? A year delay at the age of two is a half-of-life delay, which is classed as severe.

Some children do catch up, of course, especially if there is a physical reason for the delay which has been resolved. But to catch up they have to develop much faster than their non-delayed peers.

To give an example: A child of three is delayed by 6 months. To catch up in one year, that child has to develop at a rate 1.5 times that of his peers.

A child of two with a one year delay has to develop at double the rate of their peers to catch up in one year, 1.5 times to catch up in two years and 1.33 times to catch up in three years. It might not sound much but it's quite a feat.

As I said before, DD1 has had a 'gold service' provision. She's had speech therapy since her diagnosis, she's at an excellent special school with a whole school total communication environment.

The delay she has is still around half her age. So although she's developed hugely, her peers are massively ahead.

By the way, she's still one of the brightest kids I knowgrin

WrongWayWound Tue 06-Jan-15 17:57:26

I understand what you are saying on a mathematical front, but it's not straightforward. Her expressive language is far less delayed, 15words. It's just she understands no more than she say, so she scores very low on understanding of language. She doesn't always understand words she can say! So it's around 12 months on hearing language. Expressive is nearer 18 months. So it's not overall catch up?

I don't know where gross motor delay is, she didn't mention it as a concern but it's cropped up from the other peadiatrician.

Otherwise, for example stacking blocks, she's fine. It's quite an arbitrary measure I find.

I guess it's the unknown I find hard, but I do see a bright little girl with really just speech delay.

littleducks Tue 06-Jan-15 18:10:23

The normal developmental pattern is for receptive language abilities to be lower than expressive language abilities. Why do you think she understands less than she can say? Is that an observation you have made or from one of ther assessments? Is she parroting/repeating back words to you (some small children do this) or using the words incorrectly?

WrongWayWound Tue 06-Jan-15 19:25:54

She doesn't understand less, about the same. She scored much lower with a developmental peadiatric assessment as its expected they understand far more than they say. She understands about two or three extra to what she says.

She parrots well, even songs. But I'm counting words she actually understands, or at least shows a pattern of use for. Including repetition she would say more, but she forgets them straight away or only knows them in a song. She sings head shoulders, but couldn't point to the body parts in isolation

littleducks Tue 06-Jan-15 19:41:19

That does sound like a language delay, for which the glue ear most likely plays a part in. I understand that the term delay might seem harsh and some services write in terms of areas of strength and need as they would agree with your feeling about it.

In terms of language it is better to get support now as if she does have a continuing problem the earlier intervention starts the better. If she would catch up on her own without any help having had speech therapy won't have done any harm. So it's better in terms of "risk" to start assessments and support early.

Would you find out helpful to ignore the word delay and look on our as just a tick box type word that will help your daughter get the help she might need?

I think the SN boards might be helpful to discuss this more too.

lougle Wed 07-Jan-15 12:46:31

"She scored much lower with a developmental peadiatric assessment as its expected they understand far more than they say"

That is because it is the normal pattern of development.

If she is just delayed due to glue ear, then she may catch up rapidly. But it won't hurt to accept support if it is offered.

duplodon Wed 07-Jan-15 12:59:13

If she understands about fifteen words at two, her comprehension is going to be pretty significantly different to other two year olds. In fact, delay isn't a great word for it, as it's not the typical pattern of development. There are many late talkers at two who don't have longer term difficulty, but they usually understand more than they can say. Unfortunately, delayed speech and language development doesn't always 'catch up' and often, difficulties with understanding are more difficult to resolve.

duplodon Wed 07-Jan-15 13:06:19

Oops posted too soon. I work with adolescents with language disorders and they're all bright kids, some have normal nonverbal intelligence but difficulties with language, some don't... but they're like other teenagers, funny, sparky, opinionated, grumpy, sometimes annoying, easily bored by us fuddy ruddy grown ups. Language is a challenge for them but the intensive support has made the gap less wide than it might have been. The uncertainty must be killing with a little one, but the diagnosis/label whatever you want to call it is not a crystal ball. It just means she needs support now. If you can, try to get support for where she's at right this moment to develop her understanding of language. If you can afford more intensive speech therapy than the NHS will offer, I'd start there.

duplodon Wed 07-Jan-15 13:10:05

Also I would be very wary of attributing this delay to glue ear. My second son had severe glue ear bilaterally and never had language or speech delay, which was a bit of a shock to me, as I assumed he would. While it can make things worse where there is speech delay, it's unlikely to account for a delay of a year in understanding. Does she respond well to gesture?

WrongWayWound Wed 07-Jan-15 14:01:48

I really appreciate the length and amount of replies, its very helpful talking. I'm quite up and down and it helps me organise my thoughts and feelings.

I will clarify, I love her however she is. Its not a case of being scared of additional needs for her, more understanding.

She has I'd say better than average gesture and reading body language, enabling quite a degree of masking. She will pick up even on eye gaze as a prompt if you ask her to get an bject. She was unusually shy and fearful with people but she suddenly came out her shell. Shell even initiate chasing games with unknown children by tapping them for attention then stepping away giggling. She loves company, a constant upset is when other children go upstairs and she's left behind. We end up carrying her up and down when the house is full of children.

I know there's no crystal ball. At first we had quite a dire cerebral palsy outlook, but I can honestly say a stranger wouldn't guess now she had difficulty. So it goes both ways!

I guess a disagree more with the term 'developmental delay'. I know speech is off, but I think its a specific delay and she such a bright spark in herself. She's able to work out things like complex to open containers, or stack objects of difference sizes with excellent focus. We lie in bed and 'chat' for hours, in her jargon. She loves the closeness of it and uses intonation and gesture to get smiles and you're interest. Its just jargon, to have a two way interaction but she's happy

lougle Fri 09-Jan-15 18:02:24

Delay is a horrible word for two reasons (soap box moment). Firstly, it implies that the child will 'catch up'. Well it doesn't work like that. It also, I think, glosses over the difficulties a child has and once the child is 'delayed' it becomes an acceptable 'coverall' for some people, and instead of thinking 'why does this child struggle with x?' they start to think 'oh well it's no wonder she struggles with x; she has a delay'.

If I may clarify the terminology, that said, development delay is only a term given when a child is developing in the typical pattern but behind his/her peers. The term 'disorder' is given for a child who develops abnormally. So, for instance, a child who has a vocabulary in the 1000s but can't use adjectives will have a disorder, because even very young children learn to describe. 'Ball' ---> 'big ball', etc.

If a two year old can only understand 15 spoken words, that is not just a small delay. It also doesn't mean she isn't bright, etc. She can be a child with an IQ at genius level but have a difficulty with speech and language.

It's lovely that she's using eye gaze, intonation and gesture. They're all really good skills and will get her far.

Tbh, with the way services are, I would hang on to that 'delay' label for dear life and push for every bit of support going, because if they can get away without giving support, they will.

In terms of education, you need to make sure they are carefully tracking her progress now, so that you have evidence if she needs significant support in school. It would be a travesty if you thought she would catch up in her own time and then when it came to it, it was too late for support.

If she does have a significant S&L difficulty, she'll need some support at school. If it is considered to be a pure S&L difficulty, and her IQ is generally high, she may even benefit from a S&L place, but they are considered 'gold service' and very few children get them.

WrongWayWound Sat 10-Jan-15 10:25:03

Thanks. I've reconsidered everything a little, both this thread an stalking afterr the initial reaction and then subsequent letters.

Things with the cdc and hospital have been happening in parallel, but it seems some dots have been joined.

A while a go I mentioned about dd blanking out, with some small movements still. I hadn't given it a lot of thought really, just seemed 'odd' rather than really worrying.

A few weeks on in the post I've received an appointment to Gt Ormond Street and an eeg. Even with Christmas I've had the letter with two weeks from the paediatrician. 'concerns around atypical absences' is on there, plus the delay.

It's a bit shell-shocking, maybe nothing, but they've taken it quite seriously. On the plus side I presume GOSH are well placed to give a quick answer.

Funnily I saw the cdc paediatrician a month before the hospital... and still nothing from them at all! They are useless I must say, referred august, added to waiting list in September, seen end of November. Now January and bar the assessment nothing. They've contacted the hospital with a very brief input, but no support, no report for me, no further contact. I hope it's just a lot of checking to find she's ok, but t certainly gets you worrying.

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