You & Your Partner
For some adults who have SMA, their partners are also their PAs; others find that for them the PA and the partner roles have to be separated out completely. A lot of couples settle for a mix of both, maybe with some tasks or some times of the day set aside with their partner. There are as many arrangements as there are couples.
There aren’t any magic formulas and getting the balance right for you is key. It’s not always easy and can often need a lot of talking through. It can be especially difficult if the impact of your SMA means that you now need more support and help with day to day tasks that you never quite envisaged and that weren’t part of the deal when you first met.
However strong a relationship, at different times, some people find it helpful to get some ‘outside’ support with relationships. Organisations which offer advice and support include:
Relate - the UK's largest provider of relationship support and counselling, assisting people to make the most of couple and family relationships, past, present or future. They help people of all ages, backgrounds, sexual orientations and gender identities to strengthen their relationships and can support people even if they’re not currently in a relationship. They provide 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. Phone: 0300 100 1234 or visit www.relate.org.uk
Scope - a disability equality charity in England and Wales. They provide a wide range of practical information and emotional support, including on relationships: www.scope.org.uk/advice-and-support/talking-about-care-needs-with-your-partner/#Talking-about-care-needs-with-your-partner
You & Your Children
All families have challenges, both practical and emotional, and as a parent who has SMA, you may experience these and / or additional ones. Ups and downs aren’t unusual, but if they’re feeling unmanageable, it may be helpful to talk with someone other than family or friends.
The following may be helpful to explore:
Online groups and forums can provide peer support for parents who have SMA, for example SMAMA’s Facebook group:
Young Minds provide online information and resources for parents and have a telephone helpline for parents worried about a child or young person under 25 years:
Relate supports people to make the most of family relationships. They help people of all ages, backgrounds, sexual orientations and gender identities to strengthen their relationships. They provide information and offer family counselling:
Disability, Pregnancy & Parenthood provides practical information and peer support for disabled parents:
Many young children love playing at being ‘grown-ups’, often giving hilarious insights into the things we say and do; many love to help – bringing ‘breakfast’ in bed on birthdays, helping fill the trolley at the supermarket. Many young teenagers often go off all these tasks completely, hoarding dirty dishes in their bedroom and living in a ‘keep out’ lair; others as they get older still want to help as much as possible. Ideally there’s a balance between these two extremes!
If you have any concerns that your child may be taking on too many adult tasks, you might find this section of the Carers UK website helpful: www.carers.org/about-us/about-young-carers