When you are the parent of a special needs child, you often find yourself the recipient of all types of advice from people. (I wanted to say “well-meaning” people, but I’m not feeling that generous today.)
Some parents, who have raised kids without special needs, look at how you and your child are interacting and decide that you need some help because clearly, you have not figured out the basics of parenting.
When their kid gets a stomach bug, they’ll miss some school and require a bit more TLC.
When our special needs child got a stomach bug it meant hours on the phone with doctors and nurses. It meant waking up every couple of hours in the night to check on her. Sometimes it meant no sleep. It very often meant a day or two in the hospital. After something like that, you don’t show up for work the next day in your best form. It simply takes a while for you and your family to bounce back from an event where if you are not on your toes around the clock your child could die.
One of the things Liz and I have tried to do as we have gotten older is encourage parents of kids with special needs to give themselves a lot of grace and, as much as possible don’t let the judgments that often come from people get under your skin.
I understand that many people do believe they are helping, but often their words are simply pouring guilt and judgment into an already difficult situation.
I’m thinking about this again recently because of an encounter Liz had. She met with a coach recently. The person who paired them up saw that they both had some ministry background and thought they’d be a good match.
The conversation eventually got around to our daughter with special needs. He told Liz that if she simply prayed in faith, her auto-immune disorder and related issues would go away.
He clearly believed we had never thought of praying for her. And as he was working to convince Liz that prayer was all we needed, he asked her, “Do you know what the opposite of fear is?” Now, if you have been in church circles for any length of time, you know he was looking for her to say “faith.”
But instead she replied that the opposite of fear was “not fear?” (which I thought was awesome!!)
Liz and I were part of a Pentecostal church earlier in our lives. And without going into all of the theology, the common belief in Pentecostal churches is that your healing is guaranteed. BUT, if God doesn’t heal you, either you didn’t have enough faith, or else there is some secret sin in your life.
So, not only are you sick, but you are a crappy second-rate Christian too! (Are you not edified!?!)
Needless to say, Liz asked for a different coach.
Now, I don’t know if this person assumed that in almost 20 years time we never once thought of praying for our daughter. We actually have. In fact, we actually believe that God still heals. But without getting into the theology of the ‘now and the not yet of the Kingdom,’ we also know that not everyone gets healed.
After her call, Liz came in and immediately told me the story. We looked at each other, shook our heads and sighed…coordinated as only two people who have gone through this experience countless times can.
Thankfully, after 20 years of this, we are also able to laugh.