When you become a parent to a typically developing child, you are flooded with helpful advice from family, friends and other seasoned parents. But, when you become a parent to a child with extraordinary needs, medical fragility and developmental delays; suddenly you feel isolated and alone. There is no one rushing to offer you supporting advice or wrapping you in this warm blanket of knowledge. The feeling of isolation and trying to navigate this new path can feel a bit like being dropped into the centre of some foreign land. You’re left alone, trying your best to learn the language, but don’t know who to turn to for guidance and support.
This is how we felt.
It took time for us to develop our village. I remember the feeling of reassurance I had, the first time we met the members of Olivia’s developmental team. It was then we began learning the language of Cerebral Palsy. From there our village grew. We began meeting fellow parents and families, each having children or siblings with extraordinary needs. I began taking Olivia to play groups in our community that were inclusive and accessible, where children and parents could connect. I developed a genuine feeling of acceptance amongst these parents. We shared information of therapies we had tried, some better than others. We offered advice pertaining to sleep, feeding and lifting. We shared our feelings and discovered a commonality; the feeling of isolation.
Our village continues to grow even still. We continue to participate in support groups for families raising children with extraordinary needs. If you have never attended one, I recommend you do. These groups offer support, understanding, and community for everyone involved.
We all need to feel accepted, supported, understood and heard. This is even more true for parents raising children with extraordinary needs. If I can give any advice to family members or friends who feel unsure how to help a family they know raising a child with exceptional needs; just be there for them, validate their feelings, offer to play or hold the child so the parent can take a shower or finish a hot cup of coffee. Don’t feel sorry for the family, celebrate their new baby! This child will face more adversity in its life than you will know, so don’t add to it. Be the change, be accepting, be supportive, be inclusive. It takes a village.