Surviving lockdown as a parent of a child with complex needs

Lockdown has been disruptive for so many of us. Overnight, we have had to grapple with major changes in routine whilst being denied access (thankfully only temporarily, I hope) to the various support networks on which we have come to rely and regrettably until now, taken for granted, including child care (both from child carers and doting grandparents), visits to and hugs and kisses from family and friends which can instantly bring comfort and raise a smile, the supportive office environment where there is always a good humoured colleague to lift the spirits, the school community where a range of experiences can be shared at the school gates and so on.  To add to this, some of the activities upon which we have become dependent to lift our mood, help us to cope with and provide respite from the daily stresses and strains of life, such as the cinema, theatre, pub, cafe, restaurant, gym, swimming pool, amusement arcade and theme park have suddenly stopped.

How then must it be for a child with complex needs, who, to feel settled and happy, relies on routine, familiarity and sensory regulation (which allows children to maintain an appropriate level of alertness in order to behave appropriately) through a variety of appropriate activities?  For these children, the impact of a change in routine and structure is really stressful. Schools which provide vital structure, routine, various forms of therapy and plenty of opportunities to regulate have been closed for some time now and although some are slowly re-opening, they will feel and look very different to how they were before the outbreak.  Some children will be too at risk to be deemed safe to return.  Those children whose needs are so complex that they require professional carers and therapists to come to their homes may no longer be able to benefit from this care and therapy due to the infection risk if they are particularly vulnerable.

What about the parents of these children, whose needs and anxieties are most likely heightened during lockdown due to the lack of routine and structure that COVID-19 has created, whilst at the same time cruelly removing the very activities that might soothe, distract and regulate these distressed and anxious children and keep them meaningfully occupied?  On top of managing all of this, many parents are also trying to shoe-horn in their own work commitments as well as home education for these children and their siblings.  Add to this the practical stresses of lockdown, including socially distanced shopping and/or reduced food deliveries, increased levels of cleaning and tidying and what about all of those meals that need to be prepared and then cleared away afterwards….

It’s no wonder so many parents feel totally frazzled, panicked that they are not doing enough, not to mention experiencing that feeling of being spread too thinly across several competing demands and trying to do too many things at once and not very well…..

But wait.  Help is at hand in these wonderful tips and reassuring points from leaders in their respective fields:

Your mental health and well-being

• It’s normal to find lockdown overwhelming.  This advice from Russ Harris is brilliant advice for all parents:

• Do not be too hard on yourself.  At a time when many parents are really worried about supporting learning at home, particularly as some mainstream schools are setting lots of work at levels many parents cannot support with, be realistic about what you can achieve and do not be too hard on yourself

• You are not a teacher, you do not have a teaching assistant, you are not able to have a break and space from your child, you do not have an endless range of resources to hand and ideas up your sleeve, you are probably supporting more than one child, cooking, cleaning and running the house and may also possibly be trying to work from home as well as dealing with your own anxieties about coronavirus

• Fully acknowledge this time is especially difficult for families of children with special educational needs.  Whilst many schools have moved from bricks and mortar establishments to online communities with families all over the country trying to recreate their children’s classrooms within their own homes, fully acknowledge that this is simply not possible for families whose children have special educational needs, as so often the actual fabric of the building is designed to be environmentally supportive of the children who learn within it
• Prioritise your family’s emotional and mental well-being.  Do what you can, but it should be workable, fit in with your family’s circumstances and not put extra pressure on you all
• Enough is good enough.  For some families, not imposing “school life” on “work life” has enabled children to settle and be calm and then engage in some work and activities
• Learning is not limited to the National Curriculum.  It is equally valid and beneficial learning to spend time gardening, cooking, going for a walk, doing art and craft activities, playing games together and developing independence skills like washing and dressing when the pressure of the bus/taxi/transport is not looming

Explaining COVID-19 and lockdown to your child

• Social stories are an excellent way to do this. Here is an excellent example:

https://carolgraysocialstories.com/wp-content/uploads/2020/03/Pandemics-and-the-Coronavirus.pdf

Keeping a healthy and helpful routine

• To try to keep to regular routines to reduce anxiety
• Create a daily visual timetable which could include waking time and bed time, meal times, some school work, play time, physical activity such as a walk, and rest time which could include watching a movie or reading a book
• Create an area or room that can be used for learning activities such as schoolwork and use this area consistently
• Limit the amount of news coverage that is on around children as this can be stressful and children that cannot express this may act out through negative behaviours

Lockdown activities

• Make the most of using what’s in your recycling bin for many art and craft activities.  It’s amazing how creative you can be, at virtually no cost.
• Treasure hunts on a daily walk are fun. Write a list of 10 items/objects to look for during a family walk i.e. feather, daisy etc.  You can use pictures to create a list too, rather than words, depending on the needs of the child.  You can also have a different theme every day, i.e. look for objects beginning with ‘a’, ‘d’ etc and see how many you can find.
• Growing vegetables, fruits and flowers is relatively cheap and is very rewarding
• Most children are spending more time than usual on an iPad.  As a parent of a child with additional needs, do not feel guilty if you incorporate some iPad time into your child’s day.  There are some great educational apps to download, as well as fun ones, so it can contribute towards educating at home!
• Create a memory/photobook of the things that you achieved as a family whilst you had to stay in

Meeting your child’s sensory needs

• Try to do at least thirty minutes of physical work with your child once a day i.e. walking, jumping, biking, dancing or anything that gets the muscles moving.  Heavy work for the muscles helps the body regulate
• Engage in repetitive movements and left-right movements
• Repetitive movement (colouring, painting, clay sculpting, trampoline, jump roping etc) especially left-right movement (running, drumming, skating, hopping) can be effective at self-soothing and maintaining self-regulation in moments of distress
• Heavy work for the jaw helps with self-regulation.  When anxious our need to chew/eat/suck with our mouth increases.  Use snacks and drinks to help this need – crunchy snacks such as carrots, apples are ideal.  Also consider chewy snacks such as cereal bars
• Alerting snacks such as cut in half frozen grapes, apples from the fridge, ice cold drink can be helpful
• Sucking is regulating, so drinking through straws or squeezy yogurts are good options
• Focus on attachment by following their lead in play, through physical touch and cuddles, through therapeutic books and via verbal reassurances that you will be there for them in this time
• Reduce anxiety by making any routines you establish visual by using lists or charges in word or picture form

Occupational Therapy

• Engage you child in simple recipes for family baking which helps develop fine motor skills, bi-lateral integration skills, sequencing skills and sensory skills.  Use the time with your child during lockdown to engage in messy activities!
• For the more profoundly disabled children, frequent changes in position are key, as when a child is at school, they have many changes in position during the school day. So when at home, using different chairs, side lying, working in a prone position (on tummy) over a wedge, working on a plinth or therapy bench are all beneficial.

Seeking medical help

If you are worried about your child, please take them to the GP or call 111.  The hospitals are divided into COVID and non-COVID areas.  Please don’t hesitate to seek help.

At the time of writing, schools are slowly beginning to re-open, but there is still uncertainty as to what the next 12 months will look like and when teachers and children will return to school in the more conventional sense.  In the meantime, you can best support your child by really focusing on looking after the whole family’s emotional and mental well-being.

With thanks to the following amazing people who so kindly contributed to this blog:

Emma Jerman, OT specialising in sensory integration therapy, SENSI, Mulbarton, Norwich

Frances Andrews, Speech and Language Therapist, SENSI, Mulbarton, Norwich

James Stanbrook, headteacher at Sheringham Woodfields School, Sheringham, Norfolk

Kizzie Mills, OT, Psicon, Canterbury

Neil Williamson, Epilepsy Nurse/Trainer, NeilWNursing

Nicci Clark, Paediatric Occupational Therapist and OT Medico-Legal Expert, Children’s Occupational Therapy Consultancy Ltd, Kenninghall, Norfolk

Stephanie Dennis, Pears Special Resource Provision KS3 Lead, Secondary Transfer and Autism Training at JCoSS, Barnet

Dr Suzanna Watson, Consultant Paediatric Neuropsychologist