This post goes out to the ones I love. Not those in the thick of the fight, but the family and friends who are not on the front lines -- at least when it comes to raising special needs kids.
No person can go it alone. Everyone needs the support of family and friends. Yet, the number one comment heard by special needs parents is how isolated they feel. Time and time again, I hear how once social beings have now holed up in their homes, lacking the community support that is so vital to anyone's survival.
I am sure this is due, in part, to their own feelings of inadequacy and failing. Many parents are uber-aware of how their child differs from the norm. They are self-conscious about any public outing, the threat of how their child might act and the judgement that might befall them. I've been there, I know.
They also tend to be super-sensitive to things like looks, comments and even omissions. I myself can usually spot a non-sympathetic onlooker a mile away. Blame it on self-preservation, but when this happens, I will run and hide as fast as my feet will take me.
And more often than not, the people who cross my path are those on the empathetically challenged side.
Hence the isolation.
So this post is dedicated to those without special needs kids. It is written for the grandparents and the aunts and uncles. For friends of old and friends anew as well as those we see at school, in church and at extracurricular activities.
- Leave your judgement at the door. Please, please resist the urge to tell us how our parenting skills are lacking in this way or that. While your parenting techniques may work on your neurotypical child, chances are great things like being firmer, instilling harsher consequences or using corporal punishment are not options for our kids. On that same note, do not judge our lives unless you've walked a mile or two in our journey-worn moccasins. Chances are even greater you are totally off the mark in what you think you know.
- Be an inquiring mind. Many people are intimidated by special needs. They have no idea what to say or do, and as a result they avoid the situation and many times the family. I can only speak for myself here, but if you're not sure what to say or do, just ask. Most parents are hungry for others to take interest in what matters to them -- mainly their kids -- and are willingly share what they're facing as well as what works and what doesn't. .
One caveat here: Only do this if you can show genuine interest and can keep an open mind. You may hear things that challenge what you have thought to be true in terms of parenting, discipline and the like. But that's OK. You might just learn a thing or two and walk away with a level of understanding that few others have. - It's not about you. When your phone call goes unanswered or your friend is a no-show yet again, know it has nothing to do with flakiness. It has everything to do with the fact that this person is dealing with issues you cannot fathom and may be putting out the tenth fire that day. Don't let these errors in social graces get in the way of future interactions. Be persistent with your friendship and your friend will be eternally grateful.
- Ditch the platitudes. Don't say "gee that must be hard" or "let me know how I can help you?" only to disappear into the Ether the next moment. First, you're not fooling anyone. Special needs parents are smarter than you think and can spot platitude when they hear one. So do us all a favor and say what you mean. If not, say nothing and save everyone some time and heartache.
- Just do it. So many people want to help, but just don't want to impose. They will often say, "Let me know if you need anything." This is where I'll let you in on a little secret. Special needs parents are an over-tired, over-committed bunch who are generally too proud to ask for help.
So if you want to pitch in, don't leave it up to them. Just do something. I can't tell you how much I've appreciated the times when people showed up at my door -- with food or cleaning supplies or money or even Starbucks. Other have whisked away my children. All have done so without asking. And this, my friends, has been absolutely priceless.
Over the years our own isolation has grown. As things got tougher, we found out who our real friends were. Unfortunately, we discovered we had very few.
The sad fact is, we are not alone. So many other families are suffering in virtual silence. But all is not lost. With a little empathy and effort, you can make a huge difference. So, what do you say? Won't you help to reverse this trend?
Did I leave anything out? If so, I'd love to know. Just add your thoughts to how family and friends can help to the comments.
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Comments (4)
stop forcing people into the community. If we want to be isolated loners, then let us.
They forced me to have "friends" and stuff. It was part of the IEP, and it got me into so much trouble.
Great list!
Very good list! I'd add just one thing. - If you really want us to get out more help us in a practical way. Offer to babysit, give us a gift card, find out about resources in the community and pass along the information. That's helpful. Lecturing us about how we shouldn't let our lives be taken over by our children or their condition are NOT HELPFUL. The raw truth is that we don't have much of a choice.
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