There are many challenges as a special needs parent. Parenting children with special needs is a very different kind of parenting. It demands constant emotional fitness, endurance and superhuman strength.
After the words ‘special needs’ came knocking, there was very little space for any of our own physical ailments. As special needs parents we had to steal time for any doctor’s appointment we had to make. I was hardly ever sick, which was just as well as I simply didn’t have the time to pause being a special needs parent. If I got a sore throat or even flu I brushed it off, ignoring it as if it weren’t even there. The pain of a sore throat could in no way compete with the pain of my broken heart, and seemed as nothing in comparison with being a special needs parent and all the experiences and worries that accompanied being a special needs parent. Somehow, I’d find extraordinary physical strength to carry on. In the end, however, difficulty sleeping, becoming run down emotionally and physically and facing the insurmountable challenges of being a special needs parent which brings on non-stop stress and anxiety eventually took its toll.
No one will deny that the devastation of the experience of special needs can result in the loss of hope. Hitting a brick wall trying to save your special needs child can become a regular occurrence. It can be incredibly difficult not to lose all hope especially when as special needs parents so much is invested in treatments. The more we as special needs parents focused on the negatives, however, the deeper we dug a dark hole for ourselves. In time, we learnt that finding the positives and staying focused on the blessings in our lives helped us to escape the gloom and despair attached to the negatives we perceived as negatives of special needs.
It was the things we could have taken for granted each day that we made a conscious decision to acknowledge; I’d say them out loud and take a moment to really think about the fact that I had a roof over my head, food to feed my family, my health and so on. Having access to the true experts in the field of special needs and being guided by them was certainly also instrumental in keeping our hope alive. Because we had to push through the hurt and pain time and time again, however, it was natural that we should feel discouraged about special needs parenting at times. Tackling the long list of endless problems special needs presented wasn’t easy. Yet keeping a perspective on things and unravelling each stumbling block until we found a way to fight back always kept our hope alive in the special needs maze we found ourselves in.
Hope implies a certain amount of perseverance, such as believing that a positive outcome is possible even when there’s strong evidence to the contrary. As time wore on our son with special needs got older without making all the improvements we’d hoped for. When this happened, we did feel our hope slipping away and scrambled to keep our fear and anxiety in check as special needs parents. In the end we created a new normal with the demands of a special needs, child in our life and persevered and managed to survive even though things got tough along the way.
The lesson we learnt is that even though you could be facing special needs parenting, determination, hard- work and patience are key ingredients to never ever giving up.
Author of “Saving My Sons – A journey with Autism”