Special needs parenting and the importance of respite

By Natalie Roberts-Mazzeo, Writer, speaker and founder of Miracle Mama

Respite: a pause or rest from something difficult.

The word ‘respite’ rarely entered my vocabulary until I became a special needs mum. It is a word that initially felt clinical and laced with guilt, yet over the years I’ve learnt to value the need for respite and the direct flow-on effect it has for the entire family.

Respite can bring up many emotions, it highlights the painful fact that in order to cope we may need ‘time out’ from our child and their extensive needs, but on the flip-side it honours the reality that our parenting role is challenging, and in order to continue to provide the high level of care our children need, respite is paramount. 

It’s a complex word associated with dual emotions of relief and guilt. To put it into context, my daughter has extensive physical needs – her inability to sit, stand, walk or talk requires an extraordinary level of care. Add broken sleep into the mix, hundreds of hospital appointments and therapies, it’s easy to see that unless respite is taken, it’s a recipe for burn out.

Our journey asks us to go beyond ourselves, to give to a level we didn’t even know was capable in the first place. I believe that when a child comes into our care with such diverse needs the love and courage we collectively experience carries us through the toughest of times. Yet the basic facts remain alongside the sobering statistics that, unless we prioritise respite, our health and wellbeing will suffer, not to mention our ability to provide the level of care our beautiful children require.

So why the guilt?

Why, after all the heavy emotions of loss, worry and anger do we even allow guilt to seep in? We’re so hard on ourselves as parents, let alone special needs parents. That familiar undercurrent that we ‘should’ be doing more, instead of standing firm in the awareness that we are doing what we can and that alone is enough.

I became a special needs mum with the birth of my second daughter. Prior to that I was raising a healthy daughter with no additional needs, not a hospital or therapy session in sight! Since the whirlwind of diagnosis that followed my second pregnancy, there is just no comparison in the stress levels between the two experiences. Sure, parenting neurotypical children can bring up its own challenges but they are vastly different to the stressors and extra work that comes with a child’s diagnosis.

Prior to my second daughter, I may have asked for some ‘time out’ from time to time. Now I ask for ‘respite’. We have to remember that for many of us, the care our children require will extend through the usual typical years of parenting. For some it means we will need to provide hands on care all the days of our child’s life.

Respite isn’t simply having the physical break, it’s about addressing the hidden mental load that many parents carry from hour-to-hour, especially when medical needs are high and protocols are in place to keep their child alive. Yes you read that last sentence correctly, many parents are tending to children with a palliative condition, who require so much extra care that their life depends on it.

So I’m even going to go as far as say that radical respite is required!

When I have access to respite, I come back into my motherhood situation with fresh energy. I’ve learnt to drop the guilt and focus on the gains that taking respite provides. My girls see a mother who cares so much for her children, that she wants to provide the best version of herself. I want to lead by example and show that it’s okay to nourish ourselves, so we can nourish others. In fact, it’s one of the biggest blessings that extends far beyond ourselves, it carries through to our family, friends and impacts the world in a positive way.

There are so many benefits in saying ‘yes’ to respite, such as:

Rest & relaxation for the mind, body and soul.

Rejuvenation for the nervous system.

Recharge the bodies energy stores.

Regain perspective.

Reset emotions.

Release stress.

Remember your ‘why’.

Reignite your health and wellness.

Reconnect with your partner and friends.

Reclaim yourself, your passions outside the parenting role.

Respond to a vital need.

Above all else remember this, you need to nourish, so you can flourish in all areas of your life. I wish you all the respite that you need that is required for the very special and sacred role of raising your beautiful child.