As if life isn’t hard enough, we get chucked an extra curve ball in the shape of a beautiful child that must fight an extra battle. Whether this is a developmental or physical disability our kids ride a very long and often frightening roller coaster that brings emotional and physical challenges to every single day. And it is us, the parents, especially the primary carers who weather the storm and try to lighten the load as best we can. We fill our time and use our energy to be there for our child, support their struggles, and to tackle to vast flood of things to do, prepare and think about.
As a mum of an Autistic son I have already seen what feels like many years and many stages in development and I have learned over this time that a meltdown is very different to a typical tantrum, that an expression of ‘I can’t’ is very different to a typical ‘I don’t want to’. To the onlooker, a child with special needs or hidden or invisible disabilities cannot be distinguished from assumed bad behaviour. The parent and child receive very little understanding, support, and general courtesy and instead receive a lot of unhelpful advice around how to get your child to behave better.
I have a child that has had multiple meltdowns due to his struggles with overwhelm in play parks, shops, restaurants, holidays, beaches, sharing with siblings, the noise of hand dyers, crying babies, shouting, deciphering others’ tone of voice (happy, sad, angry, threatening, playful). He has experiences overwhelm when there are too many people, too much noise, the smell of food, being near mess, and being spoken to by strangers. The list is just the tip of the iceberg and goes on to include a whole host of issues surrounding the school environment, uncomfortable changes to routine triggered by school holidays, and a very real issue with separation anxiety, probably caused by his intense experiences so far in life.
It is all too often that case that this experience of difficulty with life’s daily challenges will generate a downward spiral of overwhelm that, unless you receive support, will sadly lead to a child and parent(s) with very poor mental health. The questions on my mind was “how are we going to survive this” and “what can I do to make things better”. Essentially what we need is a survival guide and so here is mine…
Survival Guide: Parenting through adversity
- Support network – Identify with your support network around you, create your inner circle of people who help and support you, and make sure these are people that you trust. Reach out to family, friends, support groups, local support services, local government and educational support services. In my experience there is a lot of support available but only a few are specifically able to help you in your unique circumstance. Choose wisely to spend your time with the right support networks that fit with your needs.
- Knowledge is power. Make your child’s needs a passion of yours – read and research around the subject to learn as much as you can. There are some really useful videos, guides and courses that you can offer tips on how to help your child but also to help others understand your child’s needs. Many of the support guides and videos can help your friends, family and school to help them understand your child and in turn they will learn how they can support you best.
- Share the load – Along side parenting, supporting and nurturing a child with needs or disabilities we also have to make time for a significant amount of extra medical and professional appointments, school SEND meetings, applications for assistance, referrals for diagnosis, post diagnosis follow up appointments, to name a few. Firstly it is important to recognise that there is a ‘load’ we carry and its not our child, its another job to coordinate all these extra admin tasks. And so with the extra tasks to do reach out to your support network to lighten the load.
- Celebrate achievements – looking back at what you have and your child has achieved so far is a really positive way to reflect on your journey and celebrate all you have achieved so far. By looking at your successes you will boost your own sense of achievement and also your child’s too.
- Have a rough plan, and prepare to change it. The arena of additional needs is minefield of possibilities, options and potential cost. Use your network to understand the best next steps for you. Identify with what is working and what isn’t working and set a goal for what you want to achieve for your family and your child in terms of development, support and wellness. Set out a plan and also be aware that you will often need to fall back on a plan B.
- Don’t lose yourself! All the time spent working on your support plans will take a toll on your energy levels and general way of life. Be aware that you have needs too and its important that your needs are met. Make time for yourself with time for reflection to understand who you are and what your needs and priorities are. Take our course Vision into Reality to check in with your goals and values and make sure you’re following your soul purpose goals so that life works out for the best for you and your family.
- Give yourself a break. Self care is important to maintain mental strength and resilience. Use our self car tips articles as a guide to help make sure you’re taking time to relax. By taking time for self care you will feel more connected to your inner knowing and you will find it easier to stay on track and not only survive the process but enjoy it too.
NLP and Coaching Services
As a mum to kids with Special Educational Needs and Disabilities, my children and I experience added difficulty and pressure in many situations every day. It often makes what should be simple become very complicated if we try to do things the ways others do. But when we embrace the special needs of our family and accept that what works for us is often different, we thrive! It is my goal to support parents and help reduce the emotional burden of caring for a child with special needs.
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