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can anyone please offer advice on dealing with this child
HurdyGurdy
Posts: 989 Forumite
sorry - title is a bit harsh, but didn't know how else to put it. This is my 4 year old grandson.
I received this text message from my son last night (2.30am!). He and his partner don't live together and my son is visiting for the week. This was the message I received:
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
He went to bed at 9pm, and has been awake since midnight and will NOT go back to sleep. He just will not give in.
There is something MASSIVELY wrong with him, and every single person that has ever dealt with him will NOT accept that, and keep moving him on like everything is rosy and dandy.
He will NOT sleep. He will NOT talk. He goes APES**T every time you try and dress him. He is STILL in nappies. He WILL NOT eat ANYTHING other than Pombears and turkey dinosaurs. He's eating probably 4 or 5 packets of crisps a day.
Every single person [his partner] talks to about him are doing nothing to help.
He's never in a million years starting school in September. Not happening. How is he supposed to go to school when he can't talk and can't use a toilet.
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
I am VERY wary of saying anything out of place here, so I would like to know what others' views are on this. Living so far away (180 miles) we (his grandparents) are very limited in what support we can offer. Given his sleeping pattern, his poor mother must be utterly exhausted. She has no family support where she lives, other than an auntie who lives relatively close by, a grandmother with dementia and a brother.
Our grandson has a report from a SALT therapist (from October 2015 - he turned 4 in December 2015), so it is known that he is developmentally delayed. He does now attend nursery a few hours a week, but doesn't interact with other children.
This is the SALT report:
Outcome / Comments
[Child] is a lovely little boy whose play and communication skills are severely delayed. An educational psychology assessment would be useful in the future in ascertaining [Child]’s overall cognitive functioning and level of learning. [Child] may also display features of a severe communication disorder although these must be viewed within the context of his overall levels of development. It will be useful to observe his social communication skills within the context of a peer group environment such as nursery and mum is looking into this. [Child] is going to receive a Portgage package to support overall development.
Review
[Child] has been seen at home for a number of sessions aimed at further assessing his communication difficulties and providing advice and support for mum. [Child] is not currently accessing any nursery which I have explained to his mum will make it difficult to diagnose any social communication difficulties if he cannot be observed within a social environment. [Child] is due to receive a package of support from the newly established Portage system.
Language and Communication:
[Child] responds appropriately to a range of single word instructions, including both nouns and verbs. He is not yet able to follow instructions containing two key pieces of information.
Expressively [Child] displays good communication intent, attempting to produce two word links. He is also keen to imitate words and vocalisation. He displays hypernasality and a lack of ability to produce consonant or vowel sounds which require an oral airstream (either spontaneously or in imitation). He may display complex motor planning difficulties which require ongoing investigation. [Child] also requires oral examination which was attempted at home but the environment was too dark. No food or drink is reported to escape down his nose. He is reported to overfill his mouth and choke from time to time but this is likely to be related to overall levels of development.
Reciprocal Social Interaction
[Child]’s eye contact is reduced. He does establish eye contact and produce a social smile when engaged in an activity he is enjoying and does appear to show true reciprocal shared enjoyment for short periods. [Child] does respond to his name being called and will engage for very short periods. He does not initiate joint attention unless to request something. Overall, [Child]’s social overtures tend to be slightly unusual in quality and tend to be restricted to his personal interests. He is a very energetic and active little boy who is able to engage for very short periods.
Play and Non-Verbal
[Child] tends to explore the toys presented to him by mouthing or throwing them. [Child]’s non-verbal pretend play skills are largely at a pre-symbolic (below 12 month) level at present with some emerging ability to imitate at this stage (he was observed brushing dolly’s hair on one occasion).
Profiling [Child]’s fine motor and grapho-motor skills using the Hebden and Whyte indicate that he is functioning at around an 18 month level in these areas at present. This is also in keeping with his overall levels of language development.
Stereotyped Behaviour and Restricted Interests:
[Child] displays some repetitive behaviour during play, for example walking around a beanbag in the room in a certain unusual way. He also displays unusual sensory interests such a repeatedly examining the rim of a toy cup at a certain angle.
I received this text message from my son last night (2.30am!). He and his partner don't live together and my son is visiting for the week. This was the message I received:
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
He went to bed at 9pm, and has been awake since midnight and will NOT go back to sleep. He just will not give in.
There is something MASSIVELY wrong with him, and every single person that has ever dealt with him will NOT accept that, and keep moving him on like everything is rosy and dandy.
He will NOT sleep. He will NOT talk. He goes APES**T every time you try and dress him. He is STILL in nappies. He WILL NOT eat ANYTHING other than Pombears and turkey dinosaurs. He's eating probably 4 or 5 packets of crisps a day.
Every single person [his partner] talks to about him are doing nothing to help.
He's never in a million years starting school in September. Not happening. How is he supposed to go to school when he can't talk and can't use a toilet.
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
I am VERY wary of saying anything out of place here, so I would like to know what others' views are on this. Living so far away (180 miles) we (his grandparents) are very limited in what support we can offer. Given his sleeping pattern, his poor mother must be utterly exhausted. She has no family support where she lives, other than an auntie who lives relatively close by, a grandmother with dementia and a brother.
Our grandson has a report from a SALT therapist (from October 2015 - he turned 4 in December 2015), so it is known that he is developmentally delayed. He does now attend nursery a few hours a week, but doesn't interact with other children.
This is the SALT report:
Outcome / Comments
[Child] is a lovely little boy whose play and communication skills are severely delayed. An educational psychology assessment would be useful in the future in ascertaining [Child]’s overall cognitive functioning and level of learning. [Child] may also display features of a severe communication disorder although these must be viewed within the context of his overall levels of development. It will be useful to observe his social communication skills within the context of a peer group environment such as nursery and mum is looking into this. [Child] is going to receive a Portgage package to support overall development.
Review
[Child] has been seen at home for a number of sessions aimed at further assessing his communication difficulties and providing advice and support for mum. [Child] is not currently accessing any nursery which I have explained to his mum will make it difficult to diagnose any social communication difficulties if he cannot be observed within a social environment. [Child] is due to receive a package of support from the newly established Portage system.
Language and Communication:
[Child] responds appropriately to a range of single word instructions, including both nouns and verbs. He is not yet able to follow instructions containing two key pieces of information.
Expressively [Child] displays good communication intent, attempting to produce two word links. He is also keen to imitate words and vocalisation. He displays hypernasality and a lack of ability to produce consonant or vowel sounds which require an oral airstream (either spontaneously or in imitation). He may display complex motor planning difficulties which require ongoing investigation. [Child] also requires oral examination which was attempted at home but the environment was too dark. No food or drink is reported to escape down his nose. He is reported to overfill his mouth and choke from time to time but this is likely to be related to overall levels of development.
Reciprocal Social Interaction
[Child]’s eye contact is reduced. He does establish eye contact and produce a social smile when engaged in an activity he is enjoying and does appear to show true reciprocal shared enjoyment for short periods. [Child] does respond to his name being called and will engage for very short periods. He does not initiate joint attention unless to request something. Overall, [Child]’s social overtures tend to be slightly unusual in quality and tend to be restricted to his personal interests. He is a very energetic and active little boy who is able to engage for very short periods.
Play and Non-Verbal
[Child] tends to explore the toys presented to him by mouthing or throwing them. [Child]’s non-verbal pretend play skills are largely at a pre-symbolic (below 12 month) level at present with some emerging ability to imitate at this stage (he was observed brushing dolly’s hair on one occasion).
Profiling [Child]’s fine motor and grapho-motor skills using the Hebden and Whyte indicate that he is functioning at around an 18 month level in these areas at present. This is also in keeping with his overall levels of language development.
Stereotyped Behaviour and Restricted Interests:
[Child] displays some repetitive behaviour during play, for example walking around a beanbag in the room in a certain unusual way. He also displays unusual sensory interests such a repeatedly examining the rim of a toy cup at a certain angle.
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Comments
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The report you quote makes clear that he has developmental delay and other issues, which doesn't sound as though they are pretending everything is rosy.
Does he still not attend nursery? Is there a reason for that?
Going to a nursery or play group might help by giving his mum a bit of a break, and the nursery may be able to assist by suggesting further support etc.
Have your son and his ex spoken to their local social services team to find out what assistance there is for children with learning disabilities?All posts are my personal opinion, not formal advice Always get proper, professional advice (particularly about anything legal!)0 -
Describing your own grandson as having "something MASSIVELY wrong with him"... nice.0
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I think it was the child's father who said that.
How very distressing for your family and your son must have been at his wits end to text you at that time of night.Norn Iron Club member 4730 -
Has either parent spoken to the speech and language therapist and asked how/when they can access the educational psychologist assessment that has been recommended?
What is the 'portage' package of support mentioned in the report? Has that been arranged?
It does sound as though the concerns have been acknowledged, but maybe the parents need a bit of help navigating the system? If he hasn't started school yet I presume he is still under the health visitor so would probably suggest contacting them first and asking for a visit to discuss all this.0 -
Poster didn't say there was something MASSIVELY wrong it was her son at the end of his tether in the night.
I'm so sorry this sounds very difficult. All I can suggest is keep badgering the health and education professionals. Hope you get some answers.0 -
No formal diagnosis of anything wrong currently other than slow & that isn't necessarily fatal just very *very* tiring on the family.
Other than keeping on trying to get a diagnosis if applicable & respite care of some sort likewise, I'd focus on practical help for the parents - washing machine, tumble drier (yes, I know, not that MSE) & occasional time off. As in can you or they afford a babysitter to take the little one out in a pushchair (restrained) to give the mum a short break? Having one hour every other day may help her have a shower, a nap, a cry & hang onto her sanity.
Have she a working freezer? Try to load it with batch cooked things the parents both eat? Yes, not living together (the benefits system is Not helping here!), but if they come together for meals, that's quality time with another adult. I don't sense mum's getting much of this.
You can't help with the other gran with dementia & it sounds like that's absorbing the energy of aunt & brother, but ye gods this couple need family backup. Have they a plan to help the child extend his range but lack the energy/personnel to implement it? Can you help with that? (Both making & implementing a plan.)
Can you help set up an outdoor safe space for him to play in? Let that energy burn in a safe environment? Need not be early learning centre, does need to be safe, easy to clean & robust.
What is this portage package, is it being delivered & is it helping?
It is not normal for a 4 year old & I'm intrigued social services haven't twigged how limited his diet is - do they reckon that he's breathing, fed & noisy therefore all is well enough? Can the health visitors suggest extend the range strategies?
All the very best to you (maintain your own health!), your son, his partner & your grandson.0 -
The "experts" round here are very reluctant to "label" a child at such an early stage.
Often a diagnosis costs the local authority money in support etc. They don't want that!
Keep on at them!I am not a cat (But my friend is)0 -
I understand your son is frustrated, but that report is far from 'rosy and dandy' it highlights many problems.
An educational; psychologist has been suggested, which he won't have access to until he goes to school and I would imagine that with his level of difficulties that should be picked up on very quickly.
Has his mother asked the health visitor/GP where he needs to be referred to next? ENT specialist? Speech therapist? Child development centre? Or is she sticking her head in the sand?
Perhaps your son needs to make an appointment with the GP/HV himself, he will probably have more energy to deal with them than his sleep deprived mother.Accept your past without regret, handle your present with confidence and face your future without fear0 -
Can't offer any help on how to "deal with" your grandchild, but the report looks as if they're assessing him (or will be referring him for assessment) for autism. It's very difficult at 3 or 4 years old as the assessment process is often only in the early stages, yet developmental differences with other children are suddenly very noticeable. Hopefully the little boy's family will get some answers soon, and appropriate support can be given to him, and them.
I'd say being an emotional support to his dad, even if it's just listening to his rants of frustration (which are totally understandable) is a valuable way of helping at this stage.0 -
Describing your own grandson as having "something MASSIVELY wrong with him"... nice.
It was a statement of facts - or would you prefer a spade was called an implement for the excavation & transportation of material over short distances?
It does sound to me like the child's parents are very much in a stage of being overwhelmed by what's going on which may give the impression of being in denial when it's the complete opposite.Retired member - fed up with the general tone of the place.0
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