Challenges & Support For You
For most parents the first few weeks following a diagnosis are a blur. Some of the most common reactions include:
- Disbelief and denial
- Feeling overwhelmed
People can experience different combinations of these emotions at different times, from diagnosis onwards.
Page last reviewed / updated: February 2021
Next review due: February 2022
What Can Help You?
- Using support from social workers, counsellors, nurses, psychologists, and your doctor.
- Talking and sharing with family members and friends, and / or letting them help with household needs.
- Using or learning strategies to reduce anxiety or tension, such as exercising, listening to music.
- Finding strength in religious beliefs or spiritual practices and talking to hospital chaplains, or a pastoral leader / support worker.
- Openly discussing fears and anxieties with your child’s medical team.
- Taking care of yourself: eating healthily, getting rest, and taking breaks.
- Taking control of decisions involving your child as much as possible.
- Expressing anger in a healthy way - finding private space to vent feelings by shouting, screaming, or crying.
- Talking with other parents of children with SMA.
- Learning to care for your child and asking all the questions you have, as many times as you need to.
- Knowing that, there was nothing you could have done to prevent your child inheriting this genetic condition.
- Recognising that whenever you experience these feelings, it’s understandable and it’s okay to ask for support at any time.
Scope - also offers advice for managing the emotional impact of your child’s disability on your life:
Contact for families of disabled children offer advice and support specifically for fathers:
Challenges & Support For Your Relationship
Some parents say their experiences of bringing up a disabled child have strengthened their relationship; for others it can be a really testing time. Different emotional reactions and different roles can add to tensions and stresses. Some ideas for looking after your relationship and for where to find support can be found through the organisations below:
The charity Contact for Families With Disabled Children suggests ways to look after and gain strength from your relationship:
They have also produced a book ‘Relationships and Caring for a Disabled Child’. You can order this on 0808 808 3555 or download it here: www.contact.org.uk/wp-content/uploads/2021/03/relationships_guide.pdf
Relate - provides face-to-face, phone and online relationship counselling services. Fees are charged to cover the cost of the counselling session, not to make a profit. Some offer subsidised counselling sessions: www.relate.org.uk/ Phone: 0300 100 1234
Professional Support & Counselling
Some people find it very helpful to talk with an independent trained professional about their feelings and how they’re managing day to day. It can be an opportunity to express feelings you haven’t wanted to say out loud to anyone in your family or friendship network.
You can ask your GP to refer you to counselling services, though in some areas you can now refer yourself to local primary care counselling services. Some hospices have counsellors who may provide support for parents. Waiting times for an appointment will vary and may be quite long so, if you can afford it, you may want to consider private counselling sessions. These organisations can help you find a local counsellor:
British Association for Counselling and Psychotherapy (BACP) - provide useful guidance on counselling and how to find a suitable counsellor: www.bacp.co.uk Phone: 01455 883 300
Counselling Directory - provides online information about different types of counselling and a directory to search for qualified counsellors:
Spiritual care team or chaplaincy service - should be available at most hospitals and hospices. These professionals are trained to talk about emotional and personal issues, can help you to explore your feelings, attitudes and beliefs and discuss any questions or concerns you might have. They will be happy to talk to anyone, no matter what their beliefs, religious or cultural identity and will be able to tell you about services which are local to you.
Your Mental Health
If you’re concerned about your mental health or the mental health of someone you care about, speak to your GP. They’ll be able to help you access help as quickly as possible. Some other organisations that can also support you include:
Improving Access to Psychological Therapies (IAPT) - to find NHS services in your area for treatment of low mood and anxiety:
Mental Health Foundation – provides information to help people look after their mental health:
Mind – a mental health charity providing information and support to empower anyone experiencing a mental health problem: