Maintaining wellbeing – both mental and physical – is incredibly important for children and adults with Smith-Magenis Syndrome, as well as their families around them.
Here, we’ve highlighted five top tips to maintain wellbeing and we speak to one family who’ve been able to make the most of exercising while in lockdown.
Keeping a good diet is especially important for those with SMS as there can be a tendency to overeat alongside a lack of energy, or want to exercise which can lead to ill-health or obesity.
Behavioural characteristics can include taking and hiding food, often leading to overeating. By providing healthy meals and snacks, it can be easier to maintain a varied diet which benefits both the family as a whole and other aspects of the syndrome which help to maintain physical wellbeing.
Particularly as boredom levels increase during lockdown, mindless snacking can easily get out of control.
- Encourage ‘healthy choices’ by keeping fruit, veggie sticks and yoghurt (low in fat and sugar) accessible.
- Avoid storing tempting snacks that are high in sugar and fat in cupboards or the fridge. Parents and carers of SMS children and adults are the ultimate masters of hiding things!
- Try switching to ‘healthier versions’ of convenient snacks, for example rice cakes instead of crackers or popcorn instead of crisps.
- Set boundaries and rules around ‘treats’ – denying will only lead to higher desirability – limit to 1 treat per day. Make the rules very clear by using visual aids, notes and verbal reminders – there is a limit!
Generally, those with SMS are incredibly social which is wonderful – human interaction, whether it’s with family, friends, teachers or the general public, is important for mental wellbeing.
During the lockdown, this has of course been limited so it’s essential that social interaction has been maintained elsewhere. Encouraging conversation about current affairs and the importance of physical/social distancing can help, allowing those with SMS to be involved and have the opportunity to ask questions about why things are different.
Virtual hangouts, such as our recent Teddy Bears’ Picnic, can also provide vital support – to those with SMS and their families, as they can ‘meet up with’ and chat to those who’ll be in similar situations. Events such as this are valuable for sharing advice, having someone to talk to and to help provide some ‘different’ entertainment.
Equally, heading outdoors and taking in a different environment and seeing new people (from a distance) also has its benefits.
Social Interaction Tips
As lockdown rules are slowly relaxing , Covid-19 is not going to suddenly disappear overnight. We all have to remain vigilant, protecting ourselves and others
- Coordinate a family video conference call, or perhaps a 1:1 video chat with a family member or friend. However, ensure the boundaries and rules are clear with timings of when and who can be called (no-one wants a 4 am SMS wake-up call!).
- Our SMS population is well-known for their ‘hugs’, hence the hashtag #SMSBearHugandBeHugged and #SMSHug – social distancing can be a challenge. Visual aids and social stories are a really good way to get the message across in a clear and easy to understand way. Sheffield Children’s NHS Trust have some great resources available.
- Normalise the use of face-coverings and masks as it becomes part of everyday life. Not only will they need to get used to wearing one in certain public spaces, but also get used to seeing other people and key workers wearing them. SMS branded masks can be purchased through our online shop.
- Maintain good hygiene and hand-washing. Plenty of visual reminders in key places (like bathrooms/toilets) can help. Carry hand-gel when out-and-about when soap and water aren’t available. It may sound obvious, but simply having regular and scheduled hand-washing sessions throughout the day will also help reinforce the message – our SMS population can be a little ‘forgetful’ at times!
Exercise is of course important for everyone – even more so in a period of lockdown while we’ve been limited to less time outside.
For the majority of families, this has meant long walks before or after the working day but for those with SMS, lower stamina means this isn’t possible, making it harder to maintain physical wellbeing.
Case Study – Lily Stevenson tricycle
Leeann Stevenson, the mother of 13-year-old Lily who has SMS, tells us how the loan of a tricycle from her local authority has been life changing for their family this year.
“Early into lockdown, we were contacted by one of Lily’s teachers as our local authority here in Wiltshire were offering modified tricycles and bikes to families who’d benefit from them – particularly while we were all spending more time at home.
For us, a family of five, it has been entirely life changing. Lily has lower energy levels than her younger siblings and simply doesn’t have the stamina, or will, to go for walks – for us all to be able to head out together in the early evenings with Lily on her tricycle has been wonderful.
Due to some of the effects of SMS, most people with the syndrome can’t fully balance on a bike – and tricycles are usually just available in smaller sizes with modifications on bigger bikes for teens and adults coming in at quite an expense.
The modifications on the tricycle also mean it can be folded away, so we’ve been able to pop it in the boot and drive further away for longer walks which has done us all the world of good. We especially didn’t want Lily’s siblings to feel as though they were missing out, but walks otherwise would have been impossible.
Lily has been absolutely over the moon with it – she loves riding along on our walks; it gives her a little independence and freedom, plus it’s meant the whole family is able to stay out for longer which has been essential for everyone’s wellbeing.
Our walks have been the highlight of each day, particularly in the earlier, stricter period of lockdown; something each of us has looked forward to all day after working or learning – it’s honestly not an exaggeration for me to say that this tricycle has saved lockdown for us!”Leeann Stevenson
Keeping active is the key, making exercise fun and accessible will ensure success and motivation.
- Contact your Local Authority to see if they have any appropriate or adapted equipment that can be ‘loaned’ to your person with SMS.
- Explore what small-grant options are available for sports equipment via charities. Newlife (up to age 19) are an amazing charity that offer small grants specifically for equipment. The Smith-Magenis Syndrome Foundation also provide small grants (up to £500) for equipment – you will need to get a supporting statement from a professional (i.e. teacher, healthcare worker, GP etc) who is familiar with your child or adult, details of the application process can be found here.
- Keep exercise to short bursts, little and often. Low muscle tone (hypertonia) is extremely prevalent within the SMS population and can lead to reduced stamina and tiredness. This coupled with a reversed circadian rhythm will have a huge impact on motivation to exercise. A short 10-minute walk to the shop, or even better – posting a letter in a post box – will provide some extra motivation!
- Consider some everyday activities like hanging the washing out on the line, carrying the shopping in from the car, vacuuming, dusting and various other simple household chores will keep them moving as-well-as some weight-bearing exercise. Seriously, our kids LOVE to help and can be a win-win situation (when supervised)!
- Create your own ‘games’ at home or in the garden. Keep it simple with activities like throwing and catching a bean-bag or ball, an obstacle-course, loading up a laundry basket and dragging it around, create a balance board to walk along, and jumping in and out of a hula hoop. The more ‘fun’ the activity the more motivated they’ll be to do it.
Sleep patterns for those with SMS can be severely disrupted.
Poor sleep at night can result in more fatigue during the day which in turn, can lead to behavioural issues affecting everyone’s wellbeing – whether it’s the person themselves or those around them.
It’s important to remember that due to differing energy levels and an erratic sleep schedule, it’s entirely normal for someone with SMS to feel sluggish at 2 pm – for them it may feel more like 2 am, so ease into the flow of naps and different sleep patterns rather than trying to force a ‘normal’ day upon them.
Ways to help combat this is to account for a daily nap and to plan exercise in the late afternoon/ early evening to aid a better night’s sleep.
- Good sleep hygiene at bedtime will help settle your child, or adult, into a more restful sleep. See our booklet “Smith-Magenis Syndrome: Information and Advice for Caregivers and Professionals” for further hints and tips for sleep.
- Try to recognise the pattern of timings for ‘dips’ in energy levels and sleepiness during the day. This can then be used to schedule naps at optimum times that will be most beneficial and avoid the tiredness triggers for difficult and challenging behaviours.
Rewarding good behaviour
Receiving positive reinforcement and feedback is equally important for good mental wellbeing, particularly for those with SMS who may otherwise receive numerous instructions and directions of what ‘not to do’.
“It’s so important to reward good behaviour where possible. With Lily, who loves the feeling of freedom and sense of independence on her tricycle, we often allow her to cycle ahead of the family while out – as long as she stays in our eyeline.
Simple measures like this, alongside reinforcing certain mantras explaining what can and can’t be done, can go a long way in supporting wellbeing. This particular example also means Lily remains excited about heading out, so she’s able to reap both the mental and physical benefits of exercise.”
Good Behaviour Tips
Recognising and rewarding our SMS children and adults can have a very positive effect on behaviours – our kids really want to please!
- Try allowing them ‘ownership’ of a task where they will succeed (i.e. a simple chore or a task that they can do independently). Rewarding their efforts with praise will have a positive impact on behaviour.
- Print out ‘Good Behaviour’ certificates, give out stickers, or create a star chart to recognise positive behaviour.
- Use positive language and body language.
- Spend some one-on-one time (without distraction) and try making their ‘reward’ a card game or engaging activity like baking – our kids are social and want to interact so this will probably be the best reward of all!
Author: Anisha Mistry – PR consultant.