Parents Connect - Support for parent carers

Louise_Scope · April 2020

Hello!

Just to introduce myself: I am Louise Gillard and I run the Parents Connect service which is based in Leeds. Parents Connect looks after and supports the well-being of parents of children with disabilities or additional needs. I am also a mother to a son with autism.

During the current situation, we are taking our sessions online, and therefore expanding the service to cover the whole of the UK. Please contact us at parentsconnect@scope.org.uk if you would like to access any of our online workshops.

I will also be checking in on here every day; so please let me know if I can help with anything you may have to ask. I may not always know the answers, but I can usually point you to someone who does!

Please take care and stay safe.

Chloe_Scope · April 2020

Thanks for joining us @Louise_Scope, great to have you with us!

gabriel336 · August 2020

Hi there! I am seeking information for my daughter. She is a single parent of 4 year old twins. One of whom is severely disabled- cerebral palsy, visually impaired, none verbal to name a few things. She has no support or help whatsoever. She moved to a different part of the country in August 2019 and by the time the education plan was in place etc the lockdown happened so she start nursery in March as planned. Although the school is due to open she has heard nothing and my granddaughter is meant to have an appointed person to care for her in the school.

She has not had so much as a letter of advice about COVID considering my granddaughter is classed as a vulnerable child. She even has to go and pick up the prescription once a month take it to the chemist then return 2-3 days later to collect 30 bottles of a nutritional drink the dietitian prescribed every month. She gets hardly any sleep. She has to blend every meal and push it through a sieve to remove any lumps then it can take 1-2 hours to feed her 1 meal. Plus she has to care for and entertain her twin. I help her as much as I can but it’s a lot even for the two off us. Can you offer any advice or information please?

Thank you in advance I only found the scope website yesterday and am very grateful to have done so.

Louise_Scope · August 2020

Hi @gabriel336. My name's Louise and I run the Parents Connect service at Scope.

It certainly seems like your daughter has a lot going on at the moment. It is wonderful that you are supporting her, especially through this current lock-down. I'm sorry to hear she doesn't receive much support elsewhere, but we may be able to help a little.

Firstly, I would suggest she contacts her daughter's school to ask what has been put in place for the start of the new school year. As she has an EHCP, the school will have to have all the support stated in that plan ready for her return to school. They may not have been in touch yet as guidance on reopening schools has been slow to come out, so it could just be that they are a bit behind. However, staff will be working, so a call to get some information should be useful.

As far as help around prescriptions etc. goes, it may be worth calling our Helpline, who can look up help for your specific area. You can phone them on 0808 800 333 (Mon-Sat 8-7; Sun 10-6) and they may be able to help get you that information. I will email them your post above too. It may also be worth speaking to her GP practice, as they may be able to send prescriptions straight to the chemist and may know of a pharmacist that delivers prescriptions to the home.

Lastly, I am running some sessions online for parents of children with disabilities and special needs, starting next month. They are once a week for 6 weeks and we offer support to parents, as well as giving them chance to talk to others who have a child with needs. If your daughter would like to come on these, please ask her to fill out the form at: https://www.scope.org.uk/family-services/parents-connect/ or she can email us at parentsconnect@scope.org.uk for some more information. We will be more than happy to give her a safe space to come and chat.

I hope that helps. Please contact us if there is any other support you need.

anxiety21 · January 2021

Hi everyone, I have just joined the group and I would really appreciate some advice please. My son is 10 and has just been diagnosed with asd which affects him socially and emotionally, he has just been given an ehcp and I think that he would really struggle in a mainstream secondary school because of his emotional meltdowns, could anyone recommend any special schools in the Walsall Borough, I have been told that he would need a school that helps children with mild to moderate learning difficulties.

kiki2020 · December 2021

Hello. I am parent of a son who has asd odd and mobility issues. He has never settled in mainstream school and also suffers with trauma from historic domestic abuse. He lies at school and makes up lies against me. I am a newly qualified social worker and I went into it to help support him better. He never takes accountability for his actions and I am constantly on edge every day he's at school which has now given me severe anxiety to the point where I have now given up on his education completely. My mental health is at its lowest point. I have also lost my dad and my son is still making things so difficult. he threatens teachers and he brings all his behaviours from school home. I live on egg shells worried he will lie to school if things don't go his way which he has already done. Mentally I am exhausted and so close to giving up on him. I don't like the person he is anymore . I have battled with schools to separate the trauma from his condition and am just being heard now when hes in his last year and not ready to sit an exam. I have no more fight left anymore in any sense of the matter.

Adrian_Scope · January 2022

Hello @kiki2020. I'm sorry things are so difficult for you at the moment and my condolences for the loss of your father.

Are you getting any support for your own mental health? What sort of support is your son getting at school and are they aware of his tendency to lie?

I've seen elsewhere that you mention you struggle with anxiety which must make the situation worse.

What does your son want to do once he finishes school? Has the past domestic abuse been reported?

Hazel123 · February 2023

Hi @Louise_Scope,
It's Hazel here, i did your Parents Connect course last term. Hope you're all well? I've just joined on here so you can be the first to say hi :-)

durhamjaide2001 · February 2023

Welcome @Louise_Scope to the community

Louise_Scope · February 2023

Hi @Hazel123,

Great to see you on here and I hope you and your family are doing well.

There's some great support on here and I know you'll have lots of support to give right back to other parents. We're always here, so please feel free to email us here at Parents Connect if there's anything we can help with.

Take care,
Louise

cheryl1986 · June 2023

Hi @Louise_Scope
I have just joined on here. I have been told you do a parent connect course. Which I would be interested in. I have an 8 year old son which we are waiting on a assessment for autism. Any help would be appreciated. Thanks
Cheryl x

L_Volunteer · August 2023

Hi @cheryl1986. I am really sorry to see no one has been able to respond to you yet. You can find Scope's Parent Connect here. Please don't hesitate to let us know if there's anything else we can do to help

MandyE · September 2023

Hi my daughter is newly diagnosed autistic at 17. Is there any information, workshops, groups who particularly deal with autistic young adults. It’s all very new to us and I think currently my daughter is struggling with accepting help, coming to terms with how autism might affect her and right now has extremely high anxiety as she’s about to start a new college. I wound love her to engage with an autistic community of peers or older (been there done that) to show her life can still be good, but she refuses anything like this. If anyone has any advice or can direct me to anything I’d be very grateful. Thanks

Louise_Scope · September 2023

Hi @MandyE Thank you for your post. It can be very difficult for any child to come to terms with a new diagnosis, especially when they are the age your daughter is.

Scope have a few services that will be able to support with the more practical side of this. We can support her/you with benefits, plus we have an employment team that can help her to think about what she wants to do in the future.

Depending on the area you live in, we can also support through our Youth Community Collective.

We also have a couple of services that can support you as a parent. Both our Parents Connect and Navigate services can help you, which will in turn help your daughter.

I'd also recommend the National Autistic Society, who are excellent for all things autism-related.

I hope that helps.

Parents Connect - Support for parent carers

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