As we start getting back to ‘normal’ (whatever that is), after the holidays, it’s a time for pondering and contemplation… Over the 12 days of Christmas I offered 12 thoughts for families with children with special or additional needs, and they each serve as a useful reminder of some of what makes us all different, and how we cope. So, here’s my 12 thoughts all together, there could have been many more, but I hope you find them informative, helpful and possibly familiar!
#1 Sleep: Some children with additional needs can regularly struggle to get to sleep, be awake all night, or wake very early in the morning all year round not just on Christmas Day. It can be really hard for them and their families.
#2 Laughter: Additional Needs families often hear many distressing sounds from their children; screams, shouts, crying… but sometimes we also hear laughter, a joyous sound to be cherished!
#3 Peace: Being a parent of a child with additional needs is a 24/7 role; there is always something happening, something that needs doing, rarely a moment to catch breath. So, when those fleeting moments of peace arrive, they are a real blessing!
#4 Trips: Trips out for additional needs families rarely ‘just happen’, they need lots of planning and preparation. Even then, things don’t always go to plan, so a successful family trip out is something to celebrate, and ‘success’ can look different for each family!
#5 Time: Children with additional needs can crave quality time with family members just as much as any other child. Sometimes in the busyness of caring, we can forget the value of just spending time together, becoming lost in the moment.
#6 Communication: Additional Needs families aren’t always easily able to understand what their children are communicating to them, whether it is something positive or negative. We become detectives, looking for clues to help us, and our child, understand each other better.
#7 Overwhelmed: Sometimes for children with additional needs things can get a bit too much and they can become overwhelmed. At these times they may need to spend some chill time in their ‘safe space’ which can help them to regulate their feelings and restore a sense of calm.
#8 Shopping: Additional Needs families need to do jobs like shopping for groceries, but these everyday tasks need thinking about. There can be many overwhelming sights, sounds, smells and crowds to deal with, and what to buy (or notto buy) can take careful negotiation!#9 Routines: Periods like Christmas and New Year can be difficult for families as the normal routines are broken. Children with additional needs can find this incredibly hard as they rely on routines and predictability to be able to cope with life, so a return to these usual routines is welcomed.
#10 Food: For some children with additional needs food can be very important, either as a motivator, a way of bringing order to the day, or a means of control. Sensory input can be provided through different foods as well. Families often learn how to use food positively to help their child.
#11 Haircuts: Some children with Additional Needs find having a haircut really hard due to the sensory issues that it causes. Families seek out barbers or hairdressers who are additional needs friendly (there are some!) or cut their child’s hair themselves, although both options can create great anxiety and sometimes meltdowns.
#12 School: The return to school after a long holiday can be very difficult for children with additional needs. They need lots of help, resourcing and support to be able to successfully re-engage with their class, teaching staff, and fellow pupils. Families can use resources such as visual timetables to help their child cope better.
I hope these 12 thoughts help you realise that if you are struggling in one or many of these ways that you are not alone, there are plenty of us out there trying to cope in just the same ways. Support networks and information resources such as Not Alone and the Additional Needs Alliance are there to help you connect with others and to face these challenges with other parents who are on the same journey.
Mark Arnold is the Additional Needs Ministry Director at leading national Christian children’s and youth organisation Urban Saints and is Co-Founder of the Additional Needs Alliance, a vibrant and fast-growing online community. He is an enthusiastic national and international advocate for children and young people with additional (special) needs or disabilities and is passionate about enabling everyone engaging with them to be inspired, trained and well resourced. Mark is a Churches for All and Living Fully Network partner, as well as being a member of the Council for Disabled Children. He blogs as the national award winning ‘The Additional Needs Blogfather’, and is father to James, who has Autism Spectrum Condition and associated Learning Disability. To find out more about how Mark and his work can help you, contact him at: firstname.lastname@example.org or @Mark_J_Arnold