How to Survive Being Friends With a Special Needs Parent

This was posted on a friends facebook page, originally from www.fireflyfriends.com.

It can be hard to be a friend to a special needs parent sometimes.

We can be highly sensitive, emotional people.

We're tried (all the time), we're busy (all the time), we're worried (all the time).

We want to be good friends to you too, and we're very aware that the friendship dynamic has changed as much from our end as from yours.

We forget birthdays, we turn down invitations and we hardly ever call you back when we say we will.

On behalf of special needs parents everywhere, I feel I can say that we still love you and want you in our lives.

To that end, I've put together a few tips from my own experience that might help us to maintain these very important relationships as we all negotiate this new landscape.

ASK SPECIFIC QUESTIONS

• We understand that you don't always know what to say -- and neither do we.
• Sometimes, we desperately want to talk about our children.
• We'll give you details you never asked for, and find it hard to shut up.
• We know this can be annoying, but sometimes it's about overcompensating for the fact that we might not have any 'big' news to share (no first steps or first words etc).
• At other times, and for the same reasons, the general "How's Charlie?" question garners nothing but a one-syllable reply: "Good".
• It's easier for both of us if you ask something a bit more specific: "How did Charlie like the zoo?" or "Is Charlie enjoying her new school?"
• Don't be afraid to ask the kinds of questions that you would ask about any 'normal' child, eg. "How does Charlie like having Mommy all to himself now that Stella has started prep?", or "What would Ian like for his birthday?"
• You may think these are hard ones because you and I both know that he lacks communication skills, but you can bet that I'll have an answer for you anyway.

DON'T FEEL GUILTY ABOUT SHARING YOUR CHILD'S MILESTONES WITH US

• This is a tricky one.
• It's one of those times it's almost unavoidable that we will feel a pang of pain and you know it.
• We know that you know it.
• Please understand that we can't help it -- and that we still want to hear your happy news.
• This is especially true when we know your children well.
• We want to celebrate with you!
• There are a couple of things you can do to make this smoother, though.
• Try not to offer your news apologetically.
• We can feel that, and it feels patronizing and horrible.
• Also, don't feel obliged to ask about our children in the same breath.
• "Little Johnny took his first steps today, and he's only ten months old! (insert sympathetic look here) How's Charlie doing? Any changes?
• This is awful, and puts us on the back foot straight away. You wouldn't do it if my child was a 'normal' non-walking ten-month-old, so don't do it just because my child is four and should be walking. 
• This seems like a no-brainer, but it happens a lot.
• Well-meaning friends and relatives make plans to do something that might seem difficult for Charlie, so we don't get invited -- or worse, we get the call that says "We didn't invite you because..."
• The truth is, there are many things that are tough for us and for Charlie.
• You'd be surprised to leave what we can do and do work around.
• There will certainly be things we'd rather not attempt, but please let us make that decision, especially if it's a family-type outing that we would otherwise have.

TALK TO OUR CHILDREN

• I can just about remember a time -- pre-children -- when I had not the faintest idea how to talk to a child.
• I was never sure at what level you should speak to them -- was asking a three - year-old about school too hard? Too easy?
• Would it be uncool to ruffle a ten-year-old boy's hair?
• What's taboo with teenagers?
• I can remember feeling awkward and strange when I saw friends with children.
• I didn't want to ignore them, but what if I said something wildly inappropriate?
• I'm guessing that's how a lot of people feel about talking to Charlie.
• There's the added possibility of looking a bit silly because she won't answer you -- and perhaps won't even look you in the eye.
• It really means something to us as parents, though, to see you make the effort.
• A simple "Hello Charlie, you look cute in your pink hat" or "Lucky you Charlie, - I love chocolate too" is enough.

TALK ABOUT OTHER THINGS TOO

• Charlie is but one aspect of our very full lives.
• Don't feel like you can't talk to us about other things going on in both our lives -- sometimes we may even appear excited to talk to you about your tax return! (Well, appear...)
• Seriously though, we do watch movies, and we do have jobs and we do have other children, and we still enjoy talking about all of them -- yours and ours.
• We can even have whole conversations sometimes that don't have Charlie in them!