A few years ago I experienced it for the first time. It was painful and raw, and then it stuck with me like an open wound that will not completely heal. Over time it ebbs and flows, only to return like hurricane winds; at times unexpected and at other times like the train wreck I knew it would be - coming fast - but with me standing there in it's wake - powerless to prevent the wreckage.
I am obviously not talking about the weather, nor am I talking about any of the personal struggles that many face when going through a clinical depression or the loss of a loved one.
I am finally writing about the one thing I generally refuse to discuss - the hollow pain of obvious rejection. Not my rejection mind you, but the rejection of my child who has special needs.
It started a few years ago when a good friend stopped responding to my requests for a playdate. After making clumsy excuses about difficulty finding something for her older son to do during the scheduled time, and a lack of response to my offers for a drop-off playdate that I would personally supervise, I figured it out fairly quickly. She did not want her child playing with mine. Either that, or her child did not want to play with mine and she understood this and was making excuses for it, hoping to avoid an uncomfortable conversation and, possibly, in an effort to save my feelings. Perhaps deep down she felt my daughter's issues were purely behavioral, and did not want her daughter exposed to these behaviors. I will never know.
But what I did know is this. What this friend did not realize is that when your child has developmental issues or special needs of any kind, this passive avoidance approach, this "kindness" is actually worse. Because it is obvious to special-needs parents at every turn that our children cannot keep up with other children physically or socially. We know that our children are the ones who melt down more quickly, have more difficulty participating, and, often, just look different as well.
We parents dealing with these issues make our own daily efforts at avoidance as well. But it is an entirely different kind of avoidance. We subconsciously speak mantras to ourselves to keep perspective: Today I will not mentally keep track of the differences between my child and others at the park. Today I will not try to fix my child all day long, but rather only address behaviors when appropriate. Today I will be grateful for the progress, the possibility of a mainstream future, and all the good I see.
But when we see and feel our child being rejected, again and again, the only thing we can truly feel is their pain.
In the situation I encountered with my friend I tried to encourage honesty. I even tried to let her off the hook in my own kind way by offering up the "Hey, even if our children don't have great chemistry, there is no reason why our friendship should suffer". But still no honest sharing or explanation followed. Months later, after going through 'playdate rejection' with her own close friend, which unfortunately permanently damaged their relationship, she seemed to indicate that she understood how I must have hurt for my daughter. I tried to open the dialogue then for honest feedback, but only received the message that "of course we can get the girls together soon", which I knew would never happen.
It would honestly have been easier, when I opened the door, for her to be honest - to say " Jill doesn't know how to play with your daughter, and doesn't understand what to do when XYZ happens" Because then I could have offered her words to explain the situation to her child. Even better, I could have helped explain it to her daughter directly to help her understand. When I realized this honesty wasn't forthcoming, I was forced to face the reality: She does not want her daughter playing with mine because of her different behaviors. This is why the dialogue did not continue honestly.
To all of those parents out there who do not know how to address questions that your child has about a child or disabled person who is different, I have a strategy for you. Be honest and direct in the simplest terms. Do not shush or hide your child's inquiry out of embarassment. As long as the parent in question is not in denial, being honest with your friend so that together you can address your child's questions about the other child's differences is one of the more helpful and supportive things that you can do. Do not lie to a good friend to save her feelings when she specifically asks for the truth. It will not work.
I put this theory into practice long ago when Sarah had questions about a child in a wheelchair in Walmart. The girl was about three years old, could not speak, and obviously had severe developmental issues. Sarah asked me, "Mommy, why is that girl in a chair?" and since she has some difficulty with volume regulation, this was not a quiet question.
Instead of shushing her or rushing her away, I answered her question, "because the wheelchair moves and gives her help to get around the store". Then a few more questions about why she couldn't walk, etc. followed, which I answered simply and positively. Then I brought Sarah over to say hello. I asked her mom, "My daughter wants to say hello and has some questions, is this OK?". This led to a short but pleasant conversation.
The young girl's mother thanked me afterwards, telling me how strangers always tell her how beautiful her daughter is when they really have questions they are afraid to ask, or they try to comfort her and tell her how God has a plan, but that they never just allow their children to say hello and act normal and friendly. She had tears in her eyes as she thanked me for this approach. Afterwards, Sarah turned to me and said, "Mommy, God makes us all different, so maybe it will take longer for her to walk, and that's OK".
Now keep in mind that this other mom and I are worlds apart on what God has given us to handle, and yet the feelings are the same. The pain you feel for your child, and the desire to be treated normally is the same. Interestingly, some parents always feel better when they see someone with a worse situation. It provides then with some hope and perspective. While this type of reminder can and does remind me how lucky I am that Sarah has a shot at a mainstream future, I am not one who feels better when gaining perspective from another's pain and misfortune. Instead I am one of those "Spongy People", who feels almost too much compassionate pain for others along with my share of gratitude. That is one of the reasons why I don't often discuss these things.
It is, however, my hope that this story will help someone know how to support a friend who has a child with special needs. It will not take away a parent's private pain, but it will create a healing dialogue, and may ultimately foster a more inclusive community.
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