Have you ever wondered what it would be like to sit down with the parent of a child with special needs and ask them what it is like? More than likely you would be greeted with a glazed stare, both from exhaustion and from determining if you are safe person to share with.
They say that the best way to get to know a person is to walk a mile in their shoes. This really hits home with families impacted by special needs. Many parents of children with additional needs have been hurt by well-meaning people who have never been in their shoes and it is difficult for them to really share where they are at with you.
If they open up, and I mean really open up, their answers will likely have the following five themes.
• It is really, really (can I add another really) lonely. When plans change, it is not because we are trying to avoid you. We do value you and want to be with you but our kids are our priority. We’re sorry we can’t make it to coffee, the guys night out, to the women’s retreat, to the ladies night, or to the family reunion. Thank you for asking and please keep inviting us. That shows us that you still care.
• It is so hard and exhausting and will be hard for you to have a friendship with us. We are a package deal with our kids. It means that we are always in survival mode and never able to relax because something is bound to come up. It is having to be hyper-vigilant, a strong advocate and on the ready.
• We are just like you. We are ordinary parents. We are not “Super Mom” or “Super Dad.” Please don’t try to encourage us by telling us that “God knew that you could handle a special-needs child.” Some days we aren’t handling it very well at all.
• We often feel judged as parents. We have to be creative and think out of the box. We know you mean well but please don’t offer advice on how to parent. As parents of children with additional needs, we have to do things differently. Please respect our choices. Thank you for being understanding, having extra patience, and compassion.
• It is hard but it is amazing and I am a better person because of my child. I love them and can’t imagine life without them.
Next time you are in a grocery store and see that mom sitting on the floor while her child is melting down, let her know she is doing a good job. When you see that friend with the autistic son, let them know you miss seeing them. Love them and when you are able, be there for them.