I have been very lucky that my immediate family is very loving and accepting of Austin. At home he is not treated any different than any of the other grandkids. When we venture out into the world well, there it is a different story. But home is our soft place to fall.
Maybe it’s because, as a family, we’ve had a lot of practice. You see, Austin was not the first baby born in our family with special needs, although he has significantly upped the ante and wins the award for Most Intense Medical Care.
While there are a few family members that don’t quite “get it” and cause me to roll my eyes on occasion, they are few and far between.
Still we are lucky.
Lucky that the majority of our family is close-knit and caring. Not all families raising children with special needs are so lucky.
Often I am contacted by mothers who feel very alone, because they are.
Their families don’t understand the dedication it takes to raise a child with special needs. Sometimes they stop calling or coming around and often times they blame it entirely on the “needy” child.
So these moms can pretty much forget even trying to get someone to learn the intricacies of tube feeding, suctioning or seizure meds and get some much needed help or a break at home.
In the beginning of our journey, I lived a 1400 miles away from my family so I can understand being alone. But again, I was lucky. My mom packed her bags and came to help me care for Austin for a few months until we could move. Not everyone is in a situation where that type of cross country move is possible.
When its physical distance that separates you it is hard to handle, but much easier to understand. When your family members live 2 miles away and refuse to see you because they cannot handle seizures, your child drooling or needing a diaper change at age 7…well that is just heartbreaking.
I often find myself at a loss for practical advice in these situations because it is foreign to me. My heart goes out to these parents, it truly does because I would be so lost without my family’s help.
So I need your help. I need some advice for these moms.
What would you tell them when they ask ‘how do I get my family to love or accept my child?’
Janis chronicles her son’s medical journey at Sneak Peek At Me. She is an advocate for medically fragile children and families living with a rare disease diagnosis.