MS: challenges and strategies

I was diagnosed with multiple sclerosis (MS) in 2004 when my younger son, Piers, was just six months old. My diagnosis was a huge shock for me and my family. My husband Les found it difficult to understand, particularly the nature of the disease, which means that I can feel well one day and incredibly ill the next.

Challenges and strategies

Piers is now five years old and his elder brother, Theo, is eight. Theo can remember a time before MS when his mum used to power walk six miles a day and go running but for Piers things have always been the way they are now.

The challenges of parenting with MS vary from day to day as I have good days and bad days. I can’t walk as far or fast as before so mobility is a big issue. I can also experience tiredness but I don’t always put fatigue down to the MS; being a parent of two active boys is exhausting for anyone!

I have learned strategies to cope with fatigue and pace myself. I compare it to managing a bank account; if I know I am going to need energy to go out and do something with my family, I need to rest beforehand. If I don’t rest, I go overdrawn, simple as that.

Disability access at school

Piers is in year one at school and Theo in year two. The school has been very supportive of me and the staff are extremely helpful. Unfortunately, the school was built in the 1970s and isn’t very accessible to disabled people. There are no funds to adapt the whole school but work is being done to adapt the entrance and include a ramp. At present, to enter the school office you have to go down a lot of steps without any handrails but the receptionist will help me or just stand by in case I need assistance while I make my own way in. I drive a trike and need to go right up to the door so a pathway has been created to allow me direct access.

To meet my needs as a disabled parent staff will also schedule separate appointments for me. For example, if I cannot make a parents’ evening because of my energy levels, they will offer me the option of meeting in the morning when I am dropping the children off, which is much easier for me.

There is still a way to go to make schools genuinely accessible to disabled parents. I would like all schools to be more accessible, which means getting rid of steps and installing ramps for starters. Access is about much more than just the physical environment though; it is also about attitudes. Now that the school has a disabled parent, it is becoming more disability aware but I would like all children, parents and teachers to become more aware of the issues.

I want my children to know that not everyone is the same and that’s OK. Our school has an autistic unit so they are used to disability. One of Theo’s friends, George, is autistic and Theo understands that he is different and that I am too.

Since I became disabled I have encountered a lot of prejudice and some other parents have been very rude to me. Sometimes, people judge me before they have even seen me, simply because they know I have MS. It can be difficult for people to understand what MS is because they can’t see it; it is an invisible disability. If I had my leg in plaster, it would be easier for them to empathise with what I was going through. It would be nice not to be judged for being a mum with MS. I would like to see the school running disability awareness sessions for parents and teachers to help with this.

Extended school services

My sons’ school runs a breakfast club and after-school club which are open to everyone. I find the after-school club provision invaluable, as if I am feeling tired, lacking in energy and need an extra hour at home, I can call the staff at short notice and they will look after them. Both my sons love the after-school club. There’s a large gardening plot so the boys can get their hands dirty, and they can also play with computers, books and musical instruments. I know that they’re safe and having fun when they are there so it gives me peace of mind and I don’t have to worry about making alternative arrangements which might not be as reliable.

Last year, I had a relapse and had to go into hospital for two months. Les works full-time so it would have been impossible for him to drop the children at school and collect them again at home time. We were able to make use of the school’s breakfast club and after-school club, which meant that he could drop them off at eight o’clock in the morning and collect them at six in the evening.

I found out about the extended school services through letters home to parents but I think perhaps they should be advertised more and in different ways to make sure that everyone is aware of what is available.

My advice to other disabled parents is that the services are out there to support you but sometimes you have to look ‘outside the box’. The extended school services are there for all parents and not specifically aimed at disabled parents, but the flexibility and help that they offer may be of particular benefit to you.

Editor’s note

From 2010, all UK schools will offer the extended services provision.

Everyday adventures

Jo and her family are featured in Breakfast at school, one of a series of short films about parenting, produced by the UK government Central Office of Information as part of a nationwide campaign, Everyday Adventures.

Aimed at parents who can feel isolated and struggle to access parenting support, the films cover a range of subjects including the benefits of registering a child’s birth; parental rights and benefits; how parents can get involved in children’s education; and the availability of extended services in schools.

The aim of the films is to help parents learn where to go for support and how to get involved in services. Footage covers the real-life stories of parents from a range of backgrounds.

In addition to Jo’s story about breakfast clubs, there are two other films featuring disabled parents, both of which focus on Deaf parents. Parents talk about how after-school clubs have improved their working lives in Moving on up, and how they got involved in their children’s schooling in My favourite day: lending a hand.

Various family support groups have assisted in the project, with help from the Parent Know How programme from the Department for Children, School and Families.

All the films are in English. The two films featuring Deaf parents are available in British Sign Language with English subtitles and other films in the series featuring non-disabled parents are available in Bengali, Gujarati, Polish and Somali with subtitles.

All films can be accessed online on YouTube at: www.youtube.com/everydayadventures09 and will be distributed in the Bounty packs given out by midwives to new mothers in the UK.