By Natalie Roberts-Mazzeo, Writer, speaker and founder of Miracle Mama
Being a sibling to a child with any sort of complex health condition is both beautiful and challenging. Although this is only an observation on my behalf, as I am a mother, not a sibling, to a beautiful child with additional needs.
It’s difficult to fully understand what it must be like for a of a sibling. Young minds form ideas in different ways and process things differently. Intuitively as an observer, the experience of being a sibling of a special needs child looks loaded in every possible way. Loaded with curiosity, loaded with worry, loaded with love and loaded with fear.
Some health conditions can be so volatile that situations can change suddenly and without warning, such as a seizure or unexpected health scare. I know how confusing and upsetting it can be for my daughter who worries when her younger sister bites her finger, or is rushed to hospital, or is in pain from an operation. That’s why it’s so important for us as parents to provide a lot of time and space for our children who have siblings with complex health conditions.
As a mother, I know when I need to have a deeper conversation with my daughter so that she can put her mind at ease over concerns for her little sister. I also know when I need to shift the focus entirely to her, which is not easy when your other child is 100% reliant on you for feeding, positioning, clothing, lifting, moving… every single human function.
I’ve watched my daughter have to tip-toe around the house when a therapist visits, or be told she can’t go into the room because it excites and distracts her sister from her therapy session.
As a parent it can be so stressful as there is so much riding on all the therapy sessions, such as the financial commitment and the need for the hour to run smoothly, so that your child will receive the best session possible. However, it this can also come at a cost – those moments when we said “ssshhh” to our daughter who is playing loudly, so that a therapy session would not be disrupted, or when a therapist hasn’t been so inclusive of her.
Sometimes she gets bored, sometimes she’s over her sister getting all the attention and sometimes she just wants to cartwheel and sing all around the house, especially in the middle of her sister’s therapy sessions! I get it, I really do – she just wants a normal environment where she can feel free. She wants to be like her friends and their siblings, playing hide and seek or running through the parks together.
Again and again, conversations pop up like little red flags that remind me as a mother just how delicate the special needs sibling relationship can get. It’s so important to keep these conversations rolling with your children at all times so they feel comfortable sharing their feelings with you. Feelings which will likely cover all emotions from fear, worry, shame, anger all the way through to love, acceptance, trust and understanding.
Keeping an open dialogue is so important; the nature of our situations as parents is that yes, our focus on our different children is out of balance, because it has to be. The reality for some of us is that we have children who are severely disabled, and their life relies on the intricate care we provide 24 hours a day.
We love equally, yet our time is portioned up differently with the physical workload that our child with additional needs requires. It is what it is, and as long as there is love, you can conquer anything – this is one of the greatest gifts our siblings learn and witness in action.
Yes, of course there are both positive and negative sides for the siblings of special needs children, yet overall I can say from experience that it is one of the most profound relationships they will have in their life. One that is built on acceptance, honour and a love that can conquer anything.