England

Contact > the charity for families with disabled children. Provides detailed information and also have an advice line.

Special Education Needs & Disabilities Information, Advice & Support (SENDIAS) >  a free, impartial and confidential service, independent from local councils.

IPSEA >  a charity providing detailed information about any educational issue that is a result of a child’s Special Educational Needs and Disability (SEND). You can also book an individual appointment.

SOS!SEN >  a charity with a free, independent and confidential helpline for parents and others looking for information and advice on Special Educational Needs and Disability (SEND).

Northern Ireland

Contact > the charity for families with disabled children, provides detailed information and also have an advice line:

SENAC > gives information and advice about getting help and support for children with special educational needs.

Scotland

Contact > the charity for families with disabled children, provides detailed information and also have an advice line.

Enquire > the Scottish advice service for additional support for learning.

Wales

Contact > the charity for families with disabled children, provides detailed information and also have an advice line.

SNAP Cymru > provides information, advice and support to parents, children and young people (0-25), who have, or may have, special educational needs or disabilities.

Early years options can include childminders, day nurseries, pre-schools, holiday playschemes, childcare in your own home and, in some areas, Portage services.

Read more >

On this page you can find:

• tips and ideas from parents and carers about what to ask and look for when choosing a school for your child
• some ideas about how to tell a school about your child and their health needs.

Read More >

All children need help and support to learn. When class teachers plan their lessons, they adapt and include activities and different ways of learning. They aim for every child to progress and achieve as much as they can.

In England, a child is described as having Special Educational Needs and Disability (SEND) if they have difficulties or a disability that impacts on their learning, and / or their access to learning. This means they need support that is extra to, or different from other children the same age.

Read more >

Many, but not all, children who have SMA, need a lot of support at home and when out and about. They may need therapies from external specialists, or specialist equipment beyond what a mainstream school can provide. They may need an EHCP to support this.

Read more >

It is a good idea to look early on into what help you can get:

England: Gov.uk/ free school transport >  

Scotland: Mygov/free school transport >

Wales: Gov.Wales/help school transport >

Northern Ireland: nidirect / home school transport > 

Your school will have carefully thought through settling in plans for all children. You should have had the opportunity to talk through any additional plans your child will need. These would be with your child’s teacher, specialist advisors and any Teaching Assistant(s) (TAs) who will be providing support. For example, about:

• daily routines for toilet
• break and lunch-times
• support with lessons and activities
• safely getting into school from the vehicle at the beginning and end of the day
• who to contact and how if you have questions.

If your child uses equipment for their mobility or other health needs, other children may be curious. You may want to talk to the class teacher and any adviser in advance about how your child and you would like to manage this. You might find it helpful for someone to talk to the class about your child’s SMA and how they might be able to help. For example, by holding doors open and not pushing against each other.

The Resources for Parents tab below may have some useful links.

With support and imagination your child’s teacher should be able to make these important parts of school life inclusive. Taking part in physical activity at playtime is often where friendships are formed and reinforced. Being included helps to raise self-esteem and confidence. Talk to your child’s teacher and any specialist staff about how any plans for including your child are progressing. Check in with your child to see what they think:

• How was playtime today?
• Who did you play with today?

Your child’s physio might be able to suggest appropriate PE activities for your child.

Activity Alliance / Inclusive PE Activity Cards > – provide education staff with the knowledge, skills, and confidence to plan and deliver inclusive and accessible PE sessions.

 MDUK -support with education >

MDUK – Education Guidelines (pdf booklet) > published in September 2016, but still useful:

• Chapter 11 Page 93 explores options for PE.
• Chapter 12 Page 105  explores options for Playtime.

As long as there is good planning your child should be included in all school trips.  You may find some tips and ideas from parents/carers will help with this

Read more >

All children who have SMA will have medical appointments they need to attend. For many they will be frequent. Many will also have planned and unplanned hospital admissions. It is important you keep your child’s school as up to date as possible about any of these.

Read More >

Unfortunately, children with health conditions are sometimes more at risk of being bullied than their peers, so it can be useful to be aware of the support available.

If at any time you think your child is being bullied, encourage them to talk to their teacher as well as talking to the teacher yourself. Schools are required to have a whole-school approach to dealing with bullying and should respond immediately to any approach you make.

• Contact / Dealing with Bullying > – provides written advice
• NSPCC / Keeping Children Safe Online > – has a range of resources for parents, children and children with SEND plus other information
• NSPCC / Talking Child – Online Safety > also provides lot of useful information

These organisations provide support and information:

• Family Lives > – 0808 800 2222
• ChildLine > – 0800 1111
• Kidscape >

Grace (mum of Sonny who lives with SMA) and our host Ross Lannon share their insights and experiences on the social, emotional, and academic aspects of transitioning to secondary school:

Recorded: June 2023

Moving from Primary to Secondary School is a big event and change for any child. The transition can be even more of a challenge for a child who has SMA as there is even more to think about.

‘Start early’ is probably the best advice. Talk to your child’s teacher and the Special Educational Needs Co-ordinator (SENCO) or equivalent. They will have a good idea of what schools in the area can offer.

Most schools will have open days you can attend the year before your child needs to apply for a place. So you should be able to get the answers to some key questions. If you think your child may become anxious or unsettled, you can do this initial work without them:

• Which schools are possible?
• Do any of them specialise e.g. in arts or sciences
• How would that fit with your child’s interests?
• Revisit the questions you had when you chose a primary school. See: Getting Ready for School >

You will then be in a good position to:

• look at a shortlist with your child
• have time to make visits
• have discussions
• make your application
• have confirmation of a place.

This will give your child’s current and new school time to plan a smooth transition.

5qSMA – Information for Schools> gives a brief general overview of the condition  – its causes, potential impact, treatment and care.

Activity Alliance > – provide inclusive PE training and resources for educational staff and others across the UK

Centre for Studies on Inclusive Education (CSIE) > – information for schools on inclusive education.

SEND Gateway > – an online portal offering educational professionals free, easy access to information, resources and training for meeting the needs of children with Special Educational Needs and Disabilities (SEND).