15Q 11.2 Microdeletion.
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LauraKate
Community member Posts: 1 Listener
Good Evening everyone,
I have an 11 year old recently diagnosed with 15Q 11.2 microdeletion. The reason for this post is that I am struggling to get any support from his school and he is on a long waiting list to see his pediatrician. (He has been seen once in 18 months, and as a result we had genetic testing, leading to the finding of this deletion). He is in Y6 in school but only working at Y3 level. His school acknowledge the fact that there are issues with his memory but are not prepared to get Educational psychologist involved. He is on the SEN register and has 30 mins additional support each week from a Teaching assistant. I have fought for years to get support but am getting nowhere. In my opinion he needs assessments to see if he has a learning disability. I would say he has but I am not a professional and without a diagnosis he will continue to go unsupported. Has anyone payed private to have their child assessed? I feel this is now my only option.
Many Thank,
Laura.
I have an 11 year old recently diagnosed with 15Q 11.2 microdeletion. The reason for this post is that I am struggling to get any support from his school and he is on a long waiting list to see his pediatrician. (He has been seen once in 18 months, and as a result we had genetic testing, leading to the finding of this deletion). He is in Y6 in school but only working at Y3 level. His school acknowledge the fact that there are issues with his memory but are not prepared to get Educational psychologist involved. He is on the SEN register and has 30 mins additional support each week from a Teaching assistant. I have fought for years to get support but am getting nowhere. In my opinion he needs assessments to see if he has a learning disability. I would say he has but I am not a professional and without a diagnosis he will continue to go unsupported. Has anyone payed private to have their child assessed? I feel this is now my only option.
Many Thank,
Laura.
Comments
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Hi @LauraKate - Welcome to the community & thank you for joining, Laura. I'm sorry your son isn't getting the support he needs from his school, & appreciate this on-going fight must be so frustrating for you.There's some information about Education here in Scope's advice section.See: https://www.scope.org.uk/advice-and-support/education/your-childs-school/ & here: https://www.scope.org.uk/advice-and-support/families-with-disabled-children/education-health-and-care-plan-ehcp/ some of which may be relevant.You could ask for an EHCP without an educational psychologist's report from my understanding of reading this.You might also look at IPSEA (Independent Provider of Special Education Advice): https://www.ipsea.org.uk/It would probably be best to try & work with his school if possible. Have you been in touch with his SENCo? Even without a learning disability (or any) diagnosis the school should be more supportive.I can also ask one of the Scope team to assist on Monday morning.
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Hi @LauraKate and a very warm welcome to the community! I'm sorry to hear about the lack of support. Did you find the information provided by @chiarieds helpful at all?
Please do let us know if you need anymore guidance.Scope -
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