Diagnosis- Don’t walk on the other side
It must be hard to know how to respond when a friend’s child is diagnosed with special needs or a disability but respond you must!
E felt abandoned in the playground after the birth of her third son who has Down’s syndrome. She said ‘friends I’d known for years started avoiding me and that hurt a lot.’Much like a bereaved friend, at the moment of diagnosis your friend probably wants the trauma/life shift they are going through to be acknowledged, and to feel heard and supported.
At the same time, their child is still alive and loved just as before, so it’s better to avoid expressions of grief and pity like: ‘I’m so sorry’ or ‘How awful’.
The curly hair project is a social enterprise based in the UK, which aims to help people with Autism Spectrum Disorders and their loved ones. All our work is based on personal, real life examples and experience.
Many Pharmacies offer a delivery service for medication which can be very helpful. Also, if you get regular prescriptions the Electronic Prescription Service (EPS) may save you time and unnecessary trips to your GP as your prescriptions can be sent electronically to the pharmacy or dispenser of your choice. Choosing a pharmacy or dispensing appliance contractor to process your EPS prescription is called nomination.
Family Fund help families across the UK who are raising a disabled or seriously ill child or young person aged 17 or under. There is eligibility criteria explained fully on their website. They can help provide grants for family breaks through Inspire who work with over 300 agencies and tour operators whether you choose to travel in the UK or overseas. They can also provide grants towards breaks to Haven in the U.K.
For families who are looking to apply for other leisure activities beside a longer family break, they will consider helping on days out to theme parks, attraction days or day trips. They also provide grants for a wide range of items, such as washing machines, sensory toys, family breaks, bedding, tablets, furniture, outdoor play equipment, clothing and computers.
Tel: 01904 550055
Disabled Facilities Grant (DFG)
You could get a grant from your council if you’re disabled and need to make changes to your home recommended by an Occupational Therapist. A Disabled Facilities Grant won’t affect any benefits you get but is dependent on income. Disabled children under 18…
If you have a free bus pass but are unable to use the bus due to mobility, disability, age or other practical difficulties then Suffolk On Board are giving you the option to relinquish your bus pass in exchange for vouchers towards the cost of taxis or other community transport. This could be as much as up to £100 per annum. See link below for full eligibility criteria.
Thank you to SuffolkOnBoard for the use of their logo.
What can schools offer?
As a Young Carer you may well experience particular challenges and demands that impact on your capacity to enjoy and achieve at school. However, you will still want to do well, although you may not always be able to make it your main priority. How can schools help you ?
Most schools will have a named person who is the main point of contact for young carers and their families. This person is likely to support young carers in the school community and raise awareness of the role of young carers so that everyone has a better understanding of the additional pressures you may face. Having a named member of staff means you as a Young Carer won’t need to explain your circumstances every time a concern arises and you will know that your privacy is being respected…
EHCP’s- What are they? How can you get one? What do they mean?
We’ve come across many Parent Carers who have concerns about their child’s education. The Children and Families Act secures the presumption of mainstream education in law. This basically means that every child has the right to mainstream education unless it is proved that their needs outweigh what a mainstream school can reasonably give.
So, what is an EHCP?
EHCP stands for Education, Health and Care Plan. It is a legal document that outlines a child or young person’s special educational, health and social care needs. The Plan will detail the extra help that the child/young person will receive in order to fulfil their potential and achieve what they want.
Who is eligible for an EHCP?
The child/young person must be aged 0-25 and have additional needs which are impacting on their education.
Communication, speech and language is a big topic in terms of children. It could be regarding their development, their childcare prior to starting school or their involvement in the school setting.
There are several factors that can contribute to communication, speech and language barriers for children. It coukd be speech delay or an issue with non-verbal communication. Many of these can be overcome with speech and language support, others may be more of a long term developmental issue depending on the condition.
If you are concerned about your child’s ability to communicate, verbally or non-verbally, it is best to speak to any other professionals involved in the child’s support if already in place.
If your concerns have not yet been through specialists it is a good starting point to speak to any teachers, early years professionals, health visitors, or your GP but there are other avenues of support you can access if you have concerns or want to improve the support you already have e.g. Sendiass (Special Educational Needs and Disabilities Information Advice and Support Service) www.suffolksendiass.co.uk
Arthritis is not just associated with ‘old people’. Here is Emily’s story….
‘ I wanted to explain that at any given age you can be diagnosed with this illness. I was diagnosed with JIA (Juvenile Idiopathic Arthritis) when I was 1 years old and now at 18, I feel more confident with this subject. This disease does not just cause ‘swollen joints’, it does in fact cause pain, fatigue and many other daily challenges. A major challenge I faced was with schooling and lack of support and understanding from my previous schools. The constant hospital appointments. The strong medications which make you feel even more sick, unwell and affects your immune system, these can make you more at risk of infection and is always a worry. It does also affect your social life as you do not know what days are going to be ‘good days’ and when you may need to cancel plans, which can make you feel very isolated. You may not always see the effects of Arthritis but it does not mean that it’s not there.’
Thank you to Arthritis Care Uk for the use of their logo.
The VODG (Voluntary Organisation Disability Group) has written a guide to help anyone who needs to purchase care support for themselves, a friend or a relative. It is an invaluable aid to people who have never purchased care support before and is a useful framework for carers in their considerations when choosing a care organisation.
Top ten tips when choosing a support provider offers practical guidance to help people choose the right social care support. The resource is designed to be used by those looking to secure high-quality social care for themselves or for a relative or friend, helping people consider the differences between receiving support from a care provider organisation or directly employing a personal assistant.
- Think about how you want to be supported
Do you want a support worker or a personal assistant (PA)? Will you employ them through an agency or directly?
- Note your first impressions
Initial conversations with your support provider will be a good indication of future relationships. Does the provider do what they promised? Did they get back to you when they said, or can you get hold of them when they say you can?
- Check how they will develop your support package
Your support provider should spend time getting to know you, to find out about your needs and wishes. They should develop a person centred plan with you and you should receive a contract that sets out your support.
How does it work? What rights do you have? What help can you receive?
Some Parent Carers choose to educate their children at home, some feel that they have no choice. As a Parent Carer you may feel that your child’s school is not providing adequate SEN provision or you could feel let down by the school’s / LEA’s failure to provide an EHCP.
So, how does Home Schooling work?
Any parent can choose to educate their child at home and they do not have to follow the National Curriculum or stick to regimented hours. They do however need to make sure that their child is educated, in accordance with Section 7 of the 1996 Education Act:
‘The parent of every child of compulsory school age shall cause him to receive efficient full-time education suitable:-
- to his age, ability and aptitude
- to any SEN’s they may have.
Autism in Women: Why does it take so long to diagnose?
According to the National Autistic Society 700,000 people in the UK are on the Autism Spectrum and within this five times as many males as females are diagnosed. So why is this?
On 26thMarch this year Lucy Edwards interviewed seven women, all of who are on the autism spectrum and all of who weren’t diagnosed until they were well into adulthood. One of these women, Hannah a 28 year old PhD student from Cambridgeshire says ‘Women and girls often have a natural drive to fit in socially and so the symptoms they present with aren’t stereotypically ‘autistic’.
Hannah and the other interviewees felt that doctors were more inclined to diagnose females with depression, anxiety, even Borderline Personality Disorder before considering autism.
Claire a 35 year old psychologist from Fife, who wasn’t diagnosed until she was 32 said that in her psychology training they were taught about autism but; ‘We weren’t told about how it presents in women. We weren’t shown the diversity between the sexes.’