One more post about Cooper this week and then I’ll move on…
I belong to a few different groups for limb differences. Some of the members are adults who have a limb difference themselves, but what I find most often is that those people aren’t very active. They’re busy out there living their lives, not thinking much about their extremities. Primarily the discussions stem from the questions of parents with a limb different child. Easily the most common topic is ‘How do I handle other people?’
How do you explain it to people?
What if someone stares?
I don’t always answer. After all, I’m new to this arena and I don’t have all the answers. It remains to be seen if any of the things we are doing are even the right things to do, to say… but I feel confident about our approach, and that has to count for something.
So if you are the parent of a ‘Lucky Fin’ kiddo, or a child with autism, or Down syndrome, or any other condition that might garner more than just a passing glance from others, and you ended up here by way of Google search, then here’s my advice.
1. Get comfortable – fast.
Whatever your child’s diagnosis, familiarize yourself with it right away. You’re going to have questions that you won’t have time to research later, so do a lot of it right away, when they’re immobile. You will be glad you did. This helps you have real answers for the questions you’ll get, and information will fend off your annoyance.
Also, the more you know, the more you understand people’s questions. They might be wondering how your child will be able to perform certain tasks, and if you’ve done your homework you might be able to tell them about others with the same condition, who are out there rocking what God gave them.
Just this afternoon the boys went to visit Lilly’s class, where she brought them for show and tell. Cooper’s little arm was very interesting to the third graders and they had lots of questions. One little girl said that she felt sorry for him. Statements like that are an opportunity for you. Are you going to bristle, or are you going to lend perspective? I took the opportunity to explain that it’s really no big deal to Cooper. Since he was born this way, he doesn’t know the world any other way, so he has no sense of loss. I asked her if I should feel sad for her that she doesn’t have a tail and we all had a good laugh.
That sweet little girl didn’t mean anything bad by what she said. Even if her wording was awkward or imperfect, she was trying to extend compassion and that is always a good thing. Speaking of which…
2. Give people the benefit of the doubt.
Stares are not all created equal. Some people are staring because they’re rude, no doubt. But others might just be curious. If you hear a child shouting in a grocery store, you’re probably going to look. That’s a natural reaction.
I once saw a Grandmother in a grocery store with a girl around 10 maybe, and the child was having a colossal meltdown. Epic. Screaming and throwing herself on the ground, making a huge scene. It was horrendous. I say that not in judgement, but in solidarity. I have had to deal with public meltdowns from toddlers and they are stressful and embarrassing – I can only imagine how much more so when the child is 5 times the size. I don’t know the girl’s diagnosis and I don’t need to – it’s really not the point. There were a few women who were staring rudely and making snide comments . I saw and I heard them. But I was there too, and my gaze may have lingered too long – only to say ‘You got this. I see you mama. I know it’s awful right now, but you are doing the best you can and I feel for you. You just need to buy some food and even though every part of you wants to run screaming for the nearest exit, you’re trying your best to keep your cool and get this over with. You have every right to be here and anyone who doesn’t like it can go suck an egg.’ I wanted so badly to catch her eye, to give her a reassuring word, to hug her and tell her it was ok to cry when she got to the car. I may have been staring, but it wasn’t unkindly.
I try to give people that same benefit of the doubt when it comes to staring at Cooper. I mean first of all, he’s adorable. Who doesn’t want to stare at a cute boy? Second, it is genuinely interesting to watch him. To see how he compensates, how he finds different ways of doing things. I’m impressed with him every day.
Here he is with a nail tucked under his little arm, hammering away:
And here he is drinking the milk out of his empty cereal bowl:
How cute is that? I have to say, I find his little arm to be absolutely adorable. I love him to pieces and I totally stare at him.
Don’t just assume that stares are bad. Instead,
3. Strike up a conversation
If you do catch someone staring, be kind. If it’s an adult I might just say hi, or something like, ‘Isn’t she cute?’ If it’s a child I ask if they’d like to see Cooper’s little arm.
What’s awesome about kids, though, is that little effort is required on my part. They have no hesitation is asking their questions, and I love that. LOVE. Don’t ever discourage your littles from asking blunt questions – it’s awesome. Life’s so much easier when we just talk plainly about our differences. No need to be uncomfortable!
Recently we had a playdate with friends, and their four year old was playing with our almost-three-year-olds. He suddenly noticed Cooper’s little arm (which in and of itself is adorable, since these kids have been together pretty regularly since birth). The little boy was eyeing it up and Cooper stuck his little arm out so he could get a better look. He then reached out and squeezed the end of Cooper’s arm, and then they went right back to playing. Problem solved.
I love that attitude.
A little arm is just a bit of a mystery, and it’s natural to be curious about it. That doesn’t need to be a big deal unless you make it a big deal.
4. Don’t make it a big deal.
Your child is not defined by his difference. It’s just a part of him, like you have blue eyes or your husband can’t carry a tune. It’s just a thing – it isn’t everything. Embrace it but don’t go overboard. Don’t make it your life. Don’t talk about it incessantly. Don’t neglect your other kids because you’re busy with this kid and this thing. That’s not healthy for anyone, and it is setting your kids up for future resentment.
Don’t try to help him do everything that’s challenging – he has to learn how to do it himself. Don’t look for ways to make everything easier – struggle isn’t a bad thing. Be a soft place to land, but don’t be a padded room.
5. Have a sense of humor.
Don’t take much in life seriously, and especially this. Your child’s diagnosis does not need to be doom and gloom. Our family is particularly irreverent, and we began joking about Cooper’s little arm right there in the delivery room, about 2 minutes after he was born.
It’s ok to laugh. It’s ok to crack jokes. In fact, I daresay your life will be better for it. You’ll be happier, and you’ll put those around you more at ease if you learn to take things in stride. Parents, your attitude toward your child’s differences will lay the groundwork for how he/she feels about herself. Our different kiddos especially need help in this area. If you can laugh about it, so can they. And immediately everyone around them can relax a little, instead of dancing around the elephant in the room.
When the boys were babies and we visited the primary school where their sister was enrolled, a sweet little kindergartener came running up to me extremely concerned that my baby had lost his arm. I guess he thought it fell off somewhere and I hadn’t noticed? We still chuckle about that one.
I firmly believe that we could solve all the world’s problems if our first reaction to everything would be laughter instead of offense. Lighten up, have fun, and laugh. Yes, even about this.
So that’s it – that’s my five things. I’m sure we will learn a lot more along the way, but this is a start, and for the past 3 years it’s worked out ok.
Do you have a special needs loved one? What would you change or add to this list?