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Do’s and Don’ts for the Ally

It’s not always easy being an ally. We know you’d like to support us in what seems an impossible situation. We also know you’re not sure what to say, or how to help. Below is a quick list of do’s and don’ts to keep you on track!

don't

Most importantly, DON’T do nothing! Life gets busy, and maybe you’re lost on how to help, but this shouldn’t be a reason to do nothing. We need you. Don’t avoid us because you’re unsure of what to say. And don’t put off a simple act of kindness because you feel it’s not “enough.” Every little bit helps.

do

DO start with this list. Do as many as possible. Or, do just one. Better still, use this list as a jumping-off point to come up with your own ideas, too.

don't

DON’T ask us, “How can I help?”. Most rare parents are incredibly overwhelmed. We can’t imagine assigning any tasks to you – we don’t want to overwhelm you, too! Sadly, we will usually politely decline a blanket offer, regardless of how much we need your help.

do

DO offer specific help instead. For example, offer to pop by to do household chores. An extra hand for laundry and dishes goes a long way! Or, if you have a full day, offer to be a nanny or assistant for the day. It may seem minor to you, but it will mean the world to us. And, bonus, it means we’d have a friend over to talk to!

don't

DON’T start a sentence with, “I know what you mean!”. We know you’re trying to relate your experiences with your children to our experiences with our rare child, but trust me on this one, you don’t know what we mean. Relating in this way makes us feel as though you weren’t listening, because if you were, you would know the experiences are not alike.

do

DO listen instead. And, listen carefully. Ask questions as we tell you about a difficult time or an unmanageable symptom. Allowing us the opportunity to explain things to you makes us feel that maybe you’ll understand a bit better. Then, ask more questions if you need to!

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DON’T be afraid to interact with our rare child. Yes, our child is complicated, but he/she is still just a kid. Unless we tell you otherwise, it’s perfectly safe to show love and affection.

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DO interact! This is particularly true if you are also interacting with our other kid(s). It breaks our hearts to watch strangers interact with one child and not the other. We hope our friends and family can fill in the gaps by ensuring our rare kid also knows they are seen and loved.

don't

DON’T avoid inviting us to your events. We know we might not be able to attend, and we know we might have to cancel last minute, but we still want to be invited. There’s always a chance we can make it, and if not, we will feel loved by being invited.

do

DO ask us if we need any accommodations. Though the best of intentions won’t necessarily guarantee our attendance, certain accommodations might make it easier for us to join you. Either way, a little bit of recognition in this department goes a long way to show you care.

never

And lastly, NEVER ever say, or even think (please!), “Everyone’s life is hard.” Until you have a child with a rare disorder, you will not understand our life, or our child’s life. What you see is a tiny fraction of our lives, like the tip of an iceberg. Hiding underneath is a massive block of ice, filled with circumstances you just can’t imagine. Respect this, and honor the idea that maybe you don’t know as much as you think you do.

Any other questions? Ask your rare friend.

Disclosure: Occasionally, we include links to recommended products. When you purchase a product through a link, we may earn a small percentage of the sale, at no cost to you. These sales contribute to the operation of our site, and help to keep content free to read.

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