It’s been a while but we are back! Sometimes writing can be quite heavy and brings up past grievances so when life gets chaotic it understandably gets pushed to the back burner for me..however my new goal is one blog post a month which is much more manageable than one a week (what was I thinking?!!).This week I’ll be delving into self-care and investing in yourself for parents of children with complex needs.
Mental Health & Support
When Keanu first began having seizures I was lucky to have the support of my family around. In that way I ensured to maintain regular exercise (yoga) 4 times a week. For me at that time it was something that I simply enjoyed the physical benefits of, but didn’t fully comprehend the importance of yoga practice for my mental health.
However, when we moved back to Australia following living in Hong Kong we had little in the way of support systems and it was during this time that the struggle was challenging. Medically the support was good for Keanu, however because we weren’t Australian permanent residents costs were high for medicine, therapy etc.
Honestly speaking at this time I just wished for my old life back. A life which was free of worry, overwhelming medical responsibilities, a spouse that was often away for work, isolation and guilt that I wasn’t doing enough. This was challenging for Jordan (my husband) to see but he also had been thrown into this unknown journey and both of us lacked what we now know.
Releasing Societies Expectations When you have a child who struggles with communication or verbal communication, it can often feel like a one-way street..imagine talking to someone and getting perhaps a glance or eye contact 1/5 time’s..sometimes less..this is where the feeling of guilt come in..are we doing enough? How can we tell? We have to remind ourselves progress IS happening just not in the conventional way..we have to look harder and realise it may be slow but just because it isn’t happening now doesn’t mean it never will. Remembering “the power of yet”..it hasn’t happened YET. Having a growth mindset and maintaining optimism for the future 100% helps.
The fact of the matter is Keanu would rather be doing his own thing (standing on the balcony in his ‘garden’ watching the trains and stimming with a book) than playing with us. This is the reality which is sometimes hard. But I have to remind myself that this is what he is happy doing, yes interaction in balance is of course important, but he is getting that when we eat meals together, when we are out and about, when we are showering him, practicing toileting and dressing him.
Different and New Normals
It is learning to let go of the ‘normal’ way of social play and communication; focusing our interactions more towards self-help and independence or therapy-based play such as in his little sensory cupboard with lights and music/visuals. Or, more recently he enjoys play-based games involving tickling and being chased. Additionally, Keanu is now the resident DJ in our household and carries the bluetooth speaker on his shoulder like a boom box while listening to his favourite songs!!
Using whatever motivators he enjoys for learning is key, for example songs with actions while waiting for the school bus to ensure he starts the day feeling happy. But it is testing when he is having a day when no songs or videos suit his preferences!! In this case it is usually because he is overstimulated, maybe he has had too much screen time or if he is tired. Maybe he wants to stand on the balcony in -1 weather?! There is always a reason to the behaviour it’s just working out what he needs to be comfortable can be tricky at times.
This is Reality so Educate Yourself I don’t share these feelings and experiences for sympathy but to convey the very real situation a lot of parents of children with additional needs face. To educate others to make life easier for all children, not just our children. Children/adults with complex needs are undoubtably vulnerable to bullying and this is where we as adults have a duty to inform those younger regarding topics of inclusion. This continues to be a journey we have unexpectedly found ourselves in with no preparation and a journey that was particularly confronting in the beginning. There is no preparation you can do if this is unforeseen, but maybe we can raise awareness of genetic differences and be there for others who have questions or uncertainties.
The Overwhelms and Empowerment
There is actually research showing stages parents go through when learning your child has special needs (adapted from Kubler-Ross):
Initial overwhelm: shock & grief;
Seeker-ship phase: understanding;
Disability focused: skill learning, preoccupation with services, educate/advocate others;
Balanced phase: acceptance, visiting parents own goals.
Of course this isn’t a linear pathway either, one will often fluctuate between the stages throughout the child’s life. In particular the seeker-ship phase will be revisited during important transitions.
Self-Care is Absolutely Key
Self-care for all parents is paramount to being the best parent you can be which is why I say "Invest in yourself first". This is even more so when you have a child with complex needs. Our schedules are demanding and unpredictable..if you are not mindful burnout can happen very quickly before you realise it.
I recently heard some valuable advice which was to make a list of all the things which make you happy..just note it down in your phone when you are in your best mood and then when you are in deep on challenging days this is one of the quickest ways to alleviate your state. I’m still a total work in progress, and, although I may be a teacher having your own children is different to having your own class in many ways.
Inspirational Journeys
Although our journey is challenging I am grateful and proud of the skills we have learnt, the knowledge we have gained and the experiences we have witnessed within our own family and many others in this community. These are experiences which open your eyes like no others.
So I ask readers of this blog to act with kindness, patience and inclusiveness when interacting with families with special needs and remember small acts make the biggest imprint.
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