As the summer holidays approach, this time can be a cause of anxiety for children who are out of routine for 8 weeks as well as their parents and caregivers who may struggle to find things to do.
When you have the added stress of having a child with a disability, activities which other children and their families find fun could have the complete opposite affect due to extra crowd numbers and noise.
Every child is different, so finding the right activity is important. Here are some Adelaide (and surrounds) based activities to consider:
Arts and Craft – craft activities, painting, drawing, stickers, chalk
Water Play – buckets, cups, boats, balls, paintbrushes
Build a Castle – pillows, chairs, table, sheets
Create a Reading/Play Nook – move furniture, blankets, pillows, books
Sensory Play – shaving foam, play-doh, floof, slime, magnetic sand
Gross Motor Play – trampoline, fitball, musical instruments
Caring for a child with special needs is challenging. It can also be thankless, relentless and make parents feel invisible within their friendship groups and families.
The best way to support carers is by making them feel like they are not alone in their struggles. Joining groups that are designed with carers in mind is a good option. I am a big advocate of Carers SA, soon to become the Carer Gateway in April 2020. However, not everyone wants to be a part of a group situation, preferring 1-1 support and familiar people only.
It is important to provide carers with choices about the type of support they need. It might be a peer support group, 1-1 counselling, carer outings or simply family and friend gatherings in supportive environments.
Providing a safe environment for the carer and the person they are caring for will be greatly appreciated and may work to ease the social isolation that many carers feel in their role. Planning inclusive events may require a little extra effort but asking questions of the carer about what would make it a more successful event for them, will go a long way in helping them feel enjoyment and a sense of belonging.
A short video powerfully depicting the importance of being grateful and mindful for what you have in life.
A little thing you can do to practice gratefulness is to keep a journal and write a point or two each day about the things you were grateful for. It could be as simple as a chat with a friend that made you feel special, a goodnight kiss from your child or a delicious cup of coffee that you didn’t have to make yourself. You will be surprised at how many beautiful moments we overlook each day. Take the time to remember and cherish them. If you wrote 2 each day, there would be 730 happy memories to be grateful for and mindful of each year.
Working with children can be a challenge, especially if they are not keen to work with you in return. This list outlining ‘The 7 Drops’ is something all practitioners and educators can try to aid building connections and relationships with the children they work with.
Drop your voice – lower your pitch. Show interest in what the child is doing with your voice, your facial expressions and body language.
Drop your body – get down to their level. If they are on the floor playing, ask to join in on what they are doing. Initiate taking turns if they will accept it.
Drop what you are doing – take your time to get to know them. Leave note-taking and other work for later, make spending time with them your priority.
Drop your guard – let them take risks. Encourage them to try different things and get messy and creative while doing it.
Drop your defences – keep your agenda to yourself. This is about the child’s development. Building a real connection and relationship needs to come from an authentic place. Set goals with the child so you are working towards the same outcomes.
Drop your batteries – turn your devices to silent and give them your full attention. This creates less distraction for you and good role-modelling for them.
Drop your misconception that fun is frivolous – learning through play is powerful. Rediscover your inner child and follow their lead. Have fun!
Finding and maintaining friendships can be difficult for many people but when you are a carer, it can feel impossible to find people who you truly connect with.
If you don’t have many friends, joining interest clubs such as a camera club, carer groups and activities, school events and online communities are some ways that you can find others who have similar interests as you.
Taking the time to build positive friendship connections increases your sense of well-being and gives you a wider world view. And by regularly talking to others, it can help reduce overall feelings of loneliness and isolation.
It is really important that when you find those connections with others that you take the time to nurture those people and share your highlights and lowlights equally. Make the time to listen to one another, have a laugh and support each other not only in the sad times but also in your endeavours and dreams.
People who are truly happy are out and about living life, enjoying their passions, doing good work and being good people. Chase your own passions and follow your own path. You will be amazed at who you find when your paths eventually cross. You will find those special people who ‘go together’ with you, who make you smile, who inspire you to do what you love and who believe in you, even when you struggle to believe in yourself.
To adequately take care of others, we must take care of ourselves and this starts with getting enough sleep and rest. If like many carers, you find it difficult to get to sleep and stay asleep, you are likely suffering from sleep deprivation and feeling lousy as a result. The reasons for sleep deprivation can be caused by disrupted sleep from the person we are caring for to finding sleep difficult because of ongoing stress and anxiety.
For each person, finding what relaxes us is the most important thing. While in the list below, number 2 can be a cause of sleeplessness in some, for others it may provide a valuable tool to quieten an overactive mind. Streaming services such as Netflix provide easy and advertisement free entertainment in the comfort of your own home. This is particularly attractive if you are restricted from going out because of your caring role.
Keeping an appreciation, worries, or to do journal can also help those who have an overactive mind, jotting down things that need to be done and things you are grateful for can prove helpful to rest your mind in the evening. Others techniques may include the use of mindfulness and meditation, listening to the radio and music, reading books and magazines or playing solo games on apps like Wordscapes, Happy Color and 4 Pics 1 Word.
It is worth taking some the time to find out what works for you and creating a routine that helps you reset for the next day.
10 Ways To Improve Your Sleep:
Create a restful environment – A dark, quiet and cool bedroom signals to your brain it’s time to wind down.
Limit screen time – Avoid iPads, mobiles, laptops and television at least one hour before bed. They emit blue light which the brain perceives as daylight. (i-devices have a night shift mode which alters the colours of your display after dark also).
Establish a bedtime routine – Doing a calming activity an hour before bedtime trains the brain to know when it’s time for bed. Try a warm bath or shower, light stretches or reading a book by soft light. Avoid anything stressful. If something is on your mind, jot it down.
Ditch the stimulants – Avoid caffeine, nicotine and alcohol at least six hours before bedtime as they accelerate the heart rate and blood pressure.
Don’t count sheep – If after twenty minutes in bed, you’re struggling to fall asleep, go to another room and do something relaxing for half an hour. Remember to dim the lights and avoid screens.
Consistent sleep and wake times – Try to wake up and go to bed as close to the same time each day as possible, even on the weekends.
Keep evening meals light – Heavy, spicy, acidic or fatty foods within two hours of bedtime can trigger or aggravate indigestion, acid reflux and heart burn. If you are hungry, snack on yoghurt, nuts or a banana.
Time your exercise right – As little as 10 minutes of daily cardio can increase the amount of deep, restorative stages of sleep. Avoid strenuous activity at least two hours before bedtime.
Balance fluid intake – Hydration is important. Too little and you’ll wake through the night thirsty and too much, you’ll be disrupted by the urge to go to the bathroom. Remember to empty your bladder one last time before bed to avoid being woken up.
Let there be light – Adequate sunlight exposure helps us stay in tune with natural day-night rhythms connected to our internal body clock. The light will help to wake you up and maintain energy levels.
Adapted from ‘The Hidden Risks of Sleep Deprivation’ Carer News 2019 Edition 2
Taking a child with a disability out into the community is often accompanied by other adults averting their eyes or pretending not to see you, especially if your child is making high pitched noises or moving awkwardly. If these adults are also parents, you might hear them tell their children tersely, ‘don’t stare’ before quickly moving their children away from you and the offending noise.
When I arrive at my son’s school to pick him up, there is always one student there who comes running to the gate and who I affectionately call the welcoming committee. She is always on the look out for parents, letting teachers know whose parent has turned up and even giving updates on how far away your child is. She is the first to smile and wave to me and I always make sure I get out of the car, regardless of how busy or tired I am to go over and say hello. Sometimes children who are non-verbal also wander up to me curiously and I always make sure to warmly greet them too, offering them a high five as this is the way they greet each other at school.
Wouldn’t it be incredible for parents to start teaching their children to ‘say hello’, instead of ‘don’t stare’? So don’t avert your eyes – it takes a few seconds to warmly smile and say hello, even better if this is followed by a friendly wave or a high five. Such simple gestures can make the world of difference in someone else’s life and have the power to change their whole day for the better.
My son Micah is 11 years old. Micah is autistic and has an intellectual disability and while he’s predominantly non-verbal in terms of having a fluent conversation with anyone, he’s in possession of a multitude of strategies for not only speaking words but also communicating about the things he is interested in.
If you were to meet Micah, he would likely be largely non-responsive to your attempts to communicate verbally with him outside of him possibly saying hello and goodbye to you. A few years ago, with the help of his speech therapist, we purchased an app called Touch Chat. Touch Chat is a communication system which also includes a keyboard page and it is through this page that we discovered that Micah can actually read many words and that he can also type, even using predictive text when he needs help. Despite him being limited in communicating verbally through his own words, he can read and write at a much higher level. Through this discovery, a whole new way to communicate with Micah was born!
Armed with this new knowledge, I begun introducing Micah to levelled readers, starting at level 1. Levelled readers use and build upon common sight words and my prime motivation for him was that he learn to identify and understand these. This is Micah reading a level 3E reader, Racing Cars:
Following on from this, Micah begun ‘scripting’ from the shows he likes to watch, attempting to verbally copy the script and singing along to the Thomas the Tank Engine song which includes the words at the bottom. This is a video he created himself and posted on You Tube:
Pushing himself further, Micah also created his own script while reading a favourite book of Thomas the Tank Engine. Here he records himself singing happy birthday in response to what he sees on the page, which is a birthday party and blowing the candles on the Thomas cake he sees coming out of the doorway:
Micah, as do many around the world, loves You Tube. As Micah has learned to type, it has become easier for him to search You Tube for the content he’s most interested in. Sometimes this content is not able to be found and he needs to search elsewhere. A few months ago, Micah started to record shows he enjoys from dvd’s and other websites which host this content and started posting them himself to You Tube. Mostly they are small snippets of the part of the show he enjoys, usually a script between characters or the opening sequence. In this recording, he’s shows 8 seconds of Team Umizoomi. It’s not a lot of time, but it has been viewed 1220 times:
Again, pushing himself forward. He has since created a video of himself playing with his own Team Umizoomi toys, using vocalisations:
These are small examples of what Micah can do and the diverse ways he can communicate with the world. While most of the content he independently uploads to You Tube, I make private for his own use – I do allow some small videos to remain public. The amazing thing about the written word for Micah and creating videos is that that scripting he has seen somehow unlocks his own verbal capacity and the words flow from him more effortlessly. It gives him the power to create his own narrative in life and that is simply amazing for him.