Last reviewed: August 2022
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.
What can help?
- 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 who have SMA.
- Giving yourself time to learn 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 – offer advice for managing the emotional impact of your child’s diagnosis.
Family Journeys: from Diagnosis to School
Martyn talks to Portia about Ezra, now 4.5 years, who has SMA Type 1 and to Mark & Panna about Aadi, now 5.5 years, who has SMA Type 2.
Recorded: September 2021
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. These resources may be helpful:
Contact for Families With Disabled Children:
- Looking after your relationship
- Relationships and Caring for a Disabled Child (pdf download) or phone 0808 808 3555 to order
Relate – provides face-to-face, phone and online relationship counselling services. Some Relate centres offer subsidised counselling sessions.
Some people find it very helpful to talk about their feelings, and how they’re managing day-to-day, with an independent, trained professional. 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) – guidance on counselling and how to find a suitable counsellor. Phone: 01455 883 300
Counselling Directory – online information about different types of counselling and a directory to search for qualified counsellors.
A 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, and 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.
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) – for 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 – provides information and support to empower anyone experiencing a mental health problem
There are many virtual groups and networks on Facebook, WhatsApp and Instagram. We have listed a number of these on this Virtual Networks page.
PARENTS! Ask us anything
In this video, Josh Wintersgill (who has SMA Type 3) and Jordanne Wozencroft (who has SMA Type 2) share their experiences of growing up and living with SMA, and answer questions from parents in the SMA Community.
Recorded: November 2020
As well as support from SMA UK, there are other charities offering support:
Contact – Phone: 0808 808 3555 – information and support for families who have a disabled child.
Home Start – Phone: 0116 464 5490 – depending on services in your area, volunteers may be able to offer friendship and practical help to families going through difficult times and those affected by disability. Parents can refer themselves for services or a referral can be made through a midwife, GP, social worker or health visitor.
Rainbow Trust Children’s Charity – Phone: 01372 363 438 – emotional and practical support to families who have a seriously ill child. To find out whether services are available in your area
Together for Short Lives – Phone: 0800 808 8100 – information and support to families who have a child with a life-limiting condition.