SEND LIVED EXPERIENCE - OUTCOMES
IT'S GOOD TO TALK...
Bexley Voice have offered a number of sessions, which we hope enabled parent/carers to talk with those supporting SEND families in Bexley, to help them gain a clearer picture of families lived experiences with SEND children - enabling them to build on good practice and improve the journey for families in the future.
Bexley Voice have offered a number of sessions, which we hope enabled parent/carers to talk with those supporting SEND families in Bexley, to help them gain a clearer picture of families lived experiences with SEND children - enabling them to build on good practice and improve the journey for families in the future.
OUTCOMES FROM OUR LIVED EXPEREINCE SESSIONS:
Session 8: Emotionally Based School Avoidance - 8.2.24
This session was attended by 11 parents parent/carers. Tamsin Cox, Bexley's Principal Educational Psychologist, Hollie Danby, Educational Psychologist, Bexley and Kelly Davey and Alison Barnes from Bexley Voice.
This session was attended by 11 parents parent/carers. Tamsin Cox, Bexley's Principal Educational Psychologist, Hollie Danby, Educational Psychologist, Bexley and Kelly Davey and Alison Barnes from Bexley Voice.
Session 7: Preparing for Adulthood - 22.11.23
This session was attended by 6 parents parent/carers. Kayleigh Skey, Quality Assurance Officer Bexley, Rachel Medhurst, Bexley Local Offer and Graham Wakefield, Kelly Davey and Alison Barnes from Bexley Voice.
This session was attended by 6 parents parent/carers. Kayleigh Skey, Quality Assurance Officer Bexley, Rachel Medhurst, Bexley Local Offer and Graham Wakefield, Kelly Davey and Alison Barnes from Bexley Voice.
Session 5/6: Down Syndrome - 12.6.23 & 11.7.23
This session was attended by 8 parent/carers over the two sessions, 2 Professionals from Bexley (Lindsay Malekzai, Designated Clinical Officer for SEND & Dawn Cook, Lead Speech and Language Specialist Assistant and 2 representatives from Bexley Voice, Kelly Davey and Lisa Randall.
This session was attended by 8 parent/carers over the two sessions, 2 Professionals from Bexley (Lindsay Malekzai, Designated Clinical Officer for SEND & Dawn Cook, Lead Speech and Language Specialist Assistant and 2 representatives from Bexley Voice, Kelly Davey and Lisa Randall.
Top Tip and Resources from Parents
Lejeune Clinic
www.lejeuneclinic.com
[email protected]
Mostly online sessions specifically for children with DS around feeding, speech and OT
Positive About Down Syndrome (PADS)
Www.positiveaboutdownsyndrome.co.uk
Facebook groups for antenatal diagnosis; 0-18 months; 18 months- 5 years and primary school
Offers online training such as EHCPs, wills, SLT, OT, early reading and online early intervention groups
21 Together
www.21together.org.uk
Offers baby groups, early intervention preschool groups, communication and education for life groups and training sessions which includes training for professionals working with children and young people with Down syndrome.
This is specifically for "Kent" based families but families in Bexley do travel to access services
Down Syndrome Association
https://www.downs-syndrome.org.uk/
Healthcare and education resources and training
Bromley Down Syndrome Support Group
https://www.bromleydssg.co.uk/
Currently more social activities with training provided for midwives and healthcare professionals with new services to develop social and communication skills planned.
Down Syndrome Medical Interest Group (DSMIG)
https://www.dsmig.org.uk/
Specifically on healthcare, they have conferences, research and training into specific topics relating to health for children and young people with Down syndrome. As a parent, I use this resource to know what tests etc should be received, how often and what the syndrome specific treatment plan is but appreciate it's probably not for all parents!
PSDS
https://www.psds.info/
Similar services to 21 Together based in Surrey that some Bexley families access
Downs South London
https://www.downssouthlondon.org/
Similar services to 21 Together based in South London that some Bexley families access
Downright Excellent
www.downrightexcellent.org
Similar services to 21 Together based in South London that some Bexley families access
- Link up with other parents and families with a child/young person with Down Syndrome if possible as a support.
Lejeune Clinic
www.lejeuneclinic.com
[email protected]
Mostly online sessions specifically for children with DS around feeding, speech and OT
Positive About Down Syndrome (PADS)
Www.positiveaboutdownsyndrome.co.uk
Facebook groups for antenatal diagnosis; 0-18 months; 18 months- 5 years and primary school
Offers online training such as EHCPs, wills, SLT, OT, early reading and online early intervention groups
21 Together
www.21together.org.uk
Offers baby groups, early intervention preschool groups, communication and education for life groups and training sessions which includes training for professionals working with children and young people with Down syndrome.
This is specifically for "Kent" based families but families in Bexley do travel to access services
Down Syndrome Association
https://www.downs-syndrome.org.uk/
Healthcare and education resources and training
Bromley Down Syndrome Support Group
https://www.bromleydssg.co.uk/
Currently more social activities with training provided for midwives and healthcare professionals with new services to develop social and communication skills planned.
Down Syndrome Medical Interest Group (DSMIG)
https://www.dsmig.org.uk/
Specifically on healthcare, they have conferences, research and training into specific topics relating to health for children and young people with Down syndrome. As a parent, I use this resource to know what tests etc should be received, how often and what the syndrome specific treatment plan is but appreciate it's probably not for all parents!
PSDS
https://www.psds.info/
Similar services to 21 Together based in Surrey that some Bexley families access
Downs South London
https://www.downssouthlondon.org/
Similar services to 21 Together based in South London that some Bexley families access
Downright Excellent
www.downrightexcellent.org
Similar services to 21 Together based in South London that some Bexley families access
Session 4: Specialist Support & Advice Over the Years - Monday 21st November ‘22
This session was attended by 6 parent/carers, 2 Professionals from Bexley (Reinhild Onuoha & Lindsay Malekzai and 3 Bexley Voice staff (also parent/carers.).
This session was attended by 6 parent/carers, 2 Professionals from Bexley (Reinhild Onuoha & Lindsay Malekzai and 3 Bexley Voice staff (also parent/carers.).
Top Tips for other parents:
Top Tips for professionals:
- Join local groups locally and on-line to get better informed.
- Your expertise on your child is valid. You are the 'expert' on your child.
Top Tips for professionals:
- Involve parents as much as possible, especially when information gathering - their experience and knowledge of their child is valuable.
- Feedback to parents about strategies and approaches that are being implemented with the child. What is working and what is not working.
- Involve parents 'lived experience' within the training of professionals.
- Support fathers to be involved.
Session 3: Securing an Educational Setting for my Child - Monday 26th September ‘22
This session was attended by 13 parent/carers, 3 Professionals from Bexley (Reinhild Onuoha, Rachel Medhurst & Lindsay Malekzai and 3 Bexley Voice staff (also parent/carers.).
This session was attended by 13 parent/carers, 3 Professionals from Bexley (Reinhild Onuoha, Rachel Medhurst & Lindsay Malekzai and 3 Bexley Voice staff (also parent/carers.).
Top Tips for other parents:
Top Tips for professionals:
- Ask other parents.
- Hit Facebook forums. Best feedback is from other parents who have children in those schools.
- Don’t just have a Plan A, have a B, C & D too!
- Draw up a clear timetable of what needs to be done.
- Knowledge is power. Find out as much information as possible.
- Read the SEN policy and SEN information report of the schools.
- SEN Support Toolkits are very helpful to offer support and ideas.
Top Tips for professionals:
- For mainstream schools to have the transparency of what days their SENCOs work on their website.
- SEND specific open days.
- Produce a 'guide' on transitions at each stage.
- Have several options available so that parents have realistic choices when making decisions about school placements.
- Have available a clear timeline of what parents need to do when.
- Hold a parent’s session similar to the SENCO transition sessions with personnel available who are able to give information/advice to parents.
- All schools should be asked to invite Bexley Voice in so that as many parents as possible will have the opportunity to get information from other parents about what works.
- Ask other parents of children with SEN to be available when open events are held in schools so that they can talk about real experiences.
Session 2: Seeking advice and support for my child with additional needs - Monday 20th June ‘22
This session was attended by 6 parent/carers, 4 Professionals from Bexley (Reinhild Onuoha, John Miller, Rachel Medhurst & Lindsay Malekzai and 3 Bexley Voice staff (also parent/carers.).
This session was attended by 6 parent/carers, 4 Professionals from Bexley (Reinhild Onuoha, John Miller, Rachel Medhurst & Lindsay Malekzai and 3 Bexley Voice staff (also parent/carers.).
Top tips from session 2
Top Tips for other parents:
Top Tips for professionals:
Top Tips for other parents:
- Join Bexley Voice and any parent carer support groups/networks for your own support. Set up a WhatsApp group for peer support.
- Exchange ideas with others and share your own experiences, there are many different vehicles to do so.
- Do trust your own view, you know your child best.
- Speak to other parents in similar situations as they can relate to your experiences and can support you. If you are not the type to connect with many people, maybe just chose one person so that you are not alone with it all.
Top Tips for professionals:
- Listen, Ask, Understand and Communicate!
- Provide lists of local resources available to parents when they are seeking information.
- Enable access to appropriately qualified professionals and support groups. (Using the list of local resources.)
- Ensure SEND and disability awareness is everybody’s core business regardless of which department somebody works in.
- Be clear and timely in your responses to us, provide relevant information and/or advise on next steps.
- Be reliable and ‘stick to’ what you agreed to do.
- Please do not underestimate the importance of a good working relationship with the escort & driver and the impact this has on the family if the child is receiving SEN travel assistance. This can make all the difference in the child and family having a good or a bad day.
- Do not forget and overlook the quiet, hardworking child with additional needs. Be aware of the more ‘subtle’ presentations of need.
- Ask and talk to us about the ‘bigger picture’. Our life has changed by having a child with SEND and it is not only about ‘educational attainment’, think of our mental health and wellbeing, pressures related to housing, and/or home life overall.
- Invest in communities and make communities more resilient.
Session 1: Noticing there were differences in my child's development - Monday 25 April ‘22
This session was attended by 8 parent/carers, 3 Bexley Voice volunteers and Reinhild Onuoha, Head of SEND, Inclusion & Targeted Youth Support.
This session was attended by 8 parent/carers, 3 Bexley Voice volunteers and Reinhild Onuoha, Head of SEND, Inclusion & Targeted Youth Support.
Top Tips for each other, for the community around us , for professionals working with us and supporting our child:
- Initial, bespoke support is key!
- Raising awareness of different special educational needs across the wider community is essential & everyone's responsibility.
- Meeting others in a similar situation is really helpful
- Signposting and advice should be available without overloading parents.
- Trust your instincts and expertise as the parent. You are the expert when it comes to your child!
- Knowing that you are not alone and not the only one experiencing this is reassuring for parents.
- Walk in support sessions can be really beneficial.
- Support pre and post-diagnosis is important and then maybe one year later a ‘check in’.
- Awareness session for parents and carers by schools, advising on support ordinarily available to a child with SEN would be helpful.
- More training for teachers in order to be able to identify children’s earlier and timelier.
- Private tours at schools/settings for parents who may feel overwhelmed.
- You are allowed to grieve and get to know the ‘unexpected’ child.
HOW WILL YOUR FEEDBACK BE USED?
Your feedback will be shared with relevant partners and providers as well the local area’s SEN board, so that this can inform the practice across services, as well as raising awareness of how certain situations and experiences have made you feel. Practitioners will benefit from hearing about your experiences and you will be influencing how we work with each other in a collaborative and respectful way in the future.
Your feedback will be shared with relevant partners and providers as well the local area’s SEN board, so that this can inform the practice across services, as well as raising awareness of how certain situations and experiences have made you feel. Practitioners will benefit from hearing about your experiences and you will be influencing how we work with each other in a collaborative and respectful way in the future.
