New here,concerned

Hi all,
thank you for allowing me to join this site. I am concerned for my 5 year old grandson. He has speech and language delay plus has a diagnosis of Early Developmental Impairment. I have researched all I can on this subject but there appears very little out there. I think I am right in thinking its a term used for assessing a preschool child and then becomes global developmental delay.
His parents were told by both a specialist speech therapist and the community paediatric consultant that he would invariably be drawn to younger children to play with and gave no reasons for this. His preschool reports put him on average at 16-22 months for almost all subjects and the preschool never saw fit to get hold of his parents about this . Tom was 4 at the time!
Speech therapy has been sporadic at best and only involves the school.
Tom is now 5 yrs and 4mths old and yet appears to be much much younger. He has also started to "gurn " extremely badly. It used to be when he was excited but now appears out of the blue and for no reason.
He also has sensory problems and an eating problem too.
My son applied for EHCP but didn’t even get past the assessment level despite the ST noting Tom needed extra help. They are in the process of appealing.
The school’s SENCO have not bothered to assess Tom, the SEND was due to go and see him but covid became the umbrella by which all help or even vague offers of help have been withdrawn.
My grandson is a happy little boy which is wonderful but lately has tried to tell us of bullying at school which is another concern.
Tom receives DLA on the sole strength of the dx of EDI and yet the Education Dept refused to allow the application to go forrward.
I’m sorry for this long winded intro but as a grandmother am concerned for my little lovely boy. The Dr made the diagnosis and then has left Tom’s parents to flounder all alone. She did ask if the gurning was a tic but I think this is just a delaying tactic by another professional in order to offload parental concern for another few months.
Tom was tested for Fragile X but this came back normal.
Not sure if anyone here can offer advice but we as a family are so concerned by Tom. I think we just want to feel not so alone.
Thank you for reading

Hi there, my son’s EHCP application was turned down initially and that decision was reversed on appeal. There should be a local SENDIASS independent education advice service available in your local authority and I can also recommend IPSEA for advice around EHCP and other educational matters (IPSEA) Independent Provider of Special Education Advice

For support there may also be a local parent carer forum normally made up of parents and carers of children with additional needs and or disabilities and they can be a great source of local support, also the local authority should have a SEND local offer directory that lists services.

I hope this info can help, I can see how much you care and how supportive you are.

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a_parents_guide_-improving_the_well-being_of_young_children_with_learning_disabilities.pdf (1.5 MB)

I would not want to advise on the process, but your very touching email reminded me of a booklet we published a couple of years ago. The focus is on family life. We translated some of our research over the years into suggestions about daily life, and many parents added their views and experiences. Hope this might be of interest to you and your grandson’s parents.
Best wishes,

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Thank you both so much for taking the time out to respond to my email. Strangely (and out of the blue hmmm) the school SENCO phoned my son at work yesterday. He apparently started somewhat belligerently but then stated he had assessed Tom again ( last week ,again hmmm) .My son had to press him on any results and the SENCO said Tom had scored under 70 but wouldn’t say how much under or if there had been any progress since last time. We actually don’t know if there was a prior assessment anyway as have never seen any paperwork. The SENCO suggested ( vaguely ) that my son not make waves until the end of spring term, again this appears to be a delaying tactic we feel. He seemed to agree that Tom needed extra help but that has been obvious since preschool. He put Tom’s age at 3 yrs 9 mths ( he is 5yrs 4 mths ) He did say that Tom uses the name of a certain teacher in talking about all teachers which explains how Mrs **** can be everywhere at once lol. We are a small family, my children are in their 40s and I have a lung condition that means I won’t be around for most of Tom’s childhood. I think that’s why I am so worried that Tom is being left to fend for himself within a class and within a school which with the greatest will in the world faces the financial problems so many schools face. The SENCO said cheerily that Tom “wasn’t the worst in the class” …a terrible statement of things to come for SN’s children I think. Again thank you ,will look at the booklet and lurk here if I may.

Welcome Vaso and thanks for sharing that very helpful guide,

There is also a support group for grandparents of children with special educational needs and disabilities. It might be worth exploring their website and it offers support.