The Parent Behind the Additional Need – I am proud to say that I am part of many parent communities. One of the most unique communities I am a member of is the Cardiofaciocutaneous (CFC) International community. CFC is a rare genetic condition that my son Nathan was born with 3.5 years ago.
I recently saw a post on the CFC International Facebook page which stated:
“Additional Needs parenting requires an almost superhuman love, where the parents expectations are set aside and the needs of the child are met first”
If I had read this 5 years ago I would have understood ‘parent expectations’ to be related to a child’s future, their independence, education, relationships, and quality of life. Now, as the parent of a child with additional needs, I know that ‘parent expectations’ actually relate to simple, daily things that I have taken for granted with my neurotypical children. For example, bath time is an enjoyable and comforting end to our day. Or that taking a trip to the park will be a fun treat for them. Or that, if all else fails, your child will fall asleep in the car or the buggy.
These expectations are daily blown out of the water by Nathan. And I can say that some days, love is not enough. Nathan has sensory modulation disorder and suspected pathological demand avoidance. As a parent of neurotypical children, I thought my patience and love had been tested to the limit by their foibles and idiosyncrasies. Little did I know, there was a whole world of sensory aversion and demand perception that I had yet to realize, let alone experience.
I naturally attended information evenings, discussion groups, and workshops to upskill in supporting my child. I sat among equally concerned, equally well-meaning parents, trying to gain some insight into how we can do better for our children with additional needs.
Oftentimes, I left these workshops deflated; feeling as though the parent experience, the human parent experience, had been completely overlooked. I wished that I was perfect for my child. I wished that I could implement the textbook response every time I was met with a challenge. But this involved putting all of my own feelings aside and focusing only on him and his needs.
I wish I could say I did this each and every day, but the truth is that, as a human, I often fail. On the days I get it wrong there is nothing like having a community to turn to. I would like to thank each and every member of CFC International for being there for me. For always supporting with tips, advice, acceptance, and understanding. We would not be where we are on this journey without you.
If you are a parent of a child with additional or complex needs I urge you to seek out your community for advice and support. Penguin Childcare Consultancy welcomes you as a part of our community for support, advice, guidance, and most importantly understanding of you, the human parent, behind the need
Emma
Principal Consultant, Penguin Childcare Consultancy
