When you are the parent of a child with special needs, there is a special place that you hold in the eyes of your family. When I talk about family I’m talking about mothers, fathers, grandmothers, grandfathers, brothers, sisters, in-laws, uncles, cousins, and others that make up our extended blood relatives. There is that unspoken curiosity of; what do I say? how do I react?
Your baby is born and you find out he/she has special needs of some kind or your baby seems fine at birth and you discover later that there is something different about your child. You look to your family members for support. For most of us, our families represent our first line of support for any unexpected challenges in life. What do your family members say? Is it congratulations on the birth of your child? Is it, I’m so sorry. Or the famous, God does not give us more than we can handle. Sometimes he does! I believe we need to be honest in our interactions with family members. We need to recognize their discomfort and educate them not resent or ignore their feelings. As new parents of a child with disabilities, we have our own feelings to work through so being upfront with our feelings will hopefully help family members more comfortable with expressing theirs.
As time passes, family members have the opportunity to interact with our kids. In our family we have tried to keep everything very normal, if there’s such a thing. We don’t have big discussions about Down syndrome and how it affects our daughter’s learning and development. She’s just Candace to our family and comes with strengths and challenges just like everyone else except she has a label. She has to carry that label. The family never talks about the label but has awkward interactions at times, not understanding how she processes information. It is not a spoken awkwardness but rather a visible, body language awkwardness. Sometimes it’s amusing to watch. It doesn’t affect the relationships we have and Candace doesn’t always see it but it’s there and we’ve gotten used to moving past it although we call it out if it’s blatant.
Does family really understand the challenges of everyday life? Unless your living those challenges I don’t think people truly understand what goes on day-to-day or what we have to figure out financially. We as parents of a child with special needs also have to continually think about the future. What will happen to our children when we’re gone? Our retirement will include our child living with us. Family doesn’t see how all of this affects us. We can help by educating, not shaming or emphasizing how much this takes from our emotional bank. Talk to other parents who have some of the same challenges as you and use that as an added level of support. Honesty and education will help family members begin to understand the ups and downs of being a parent of a child with special needs. Understanding begins with educating.
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