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7 Tips for Being a Friend to a Special-Needs Parent

Today, I’m honored to be guest posting for WhattoExpect.com.  

Three years ago, I gave birth to a beautiful baby boy we named Callum. He was, and continues to be, a joy to us. But, shortly before he turned a year old, I began to notice the telltale signs of autism. We soon were thrown into the world of developmental therapies, specialists, and ESE. It was a frightening time of worry for his future and adjusting to a reality not quite like the one we had envisioned. And, though we adore him and wouldn’t trade him for the world, his needs have certainly affected every part of our lives. One of the things I wouldn’t have expected it to affect was my friendships. But it did. Some of the people I expected to be there weren’t. And some people I never expected to be there were. Often, I have noticed a hesitation or awkwardness on the part of friends who just don’t know what to say or do. I know they care. And I know they mean well. They are, quite simply, at a loss.

Here is what I would like to say to them and others like them, if they were to ask how to be a friend to a special-needs parent:  Continue Reading…

Dear Friend Hesitant to Interact With My Special Needs Child

Dear Friend Hesitant to Interact With My Special Needs Child:

I know my child makes you nervous.

It’s okay. Really. I still love you.

Knowing you to be the good and kind person of whom I am fond, I know the lack of interaction with him isn’t deliberate.  You are simply afraid, not of him but of doing something to upset him.  I have had this same fear in being around other people’s special needs kids in the past, so I get it.  I do.  But it makes me sad that you may be holding out and miss getting to know my sweet, precious little boy.  Because he is truly worth knowing.

One of the great wisdom statements about special needs children is that it is important to remember that they are first –children, followed by their special needs.  But I know that many folks, you included, see my child and see his special needs first.  And, I can’t blame you.  He is certainly different.

But, really, he is just a little boy, three years old.  And, though he is autistic and differs from typical children, it doesn’t change the part of him that is, first and foremost, a child.  Those of us who have, love, or work with special needs children get this.  But as my child has grown and his needs have become more evident, I have noticed well-intentioned family, friends, and acquaintances such as yourself struggle with how to interact with my son.

When my friends meet him – and aren’t sure how to engage him – it usually goes something like this:

“Will he get upset if I…?”

“Is he doing this because…”

“But he is so _______!  Are you sure he’s autistic?”

I know you aren’t avoiding him because you find him repugnant.  You are simply hesitant.  You don’t know where to begin.  And you probably feel guilty about it.  You may feel that stress come over you when you see him – wanting to interact with him like you would any other child, but fearful of saying or doing the wrong thing.  It probably doesn’t help that you once saw “Rainman”.   So, you ask questions but hold back, unsure of what to do.  I know you want a clear picture of him – a kind of map to guide you in interacting with him.  And that’s where I can’t completely help you.  Because getting a clear snapshot of a child with special needs is a very difficult thing.  Hence all the specialists.

I have used my three lenses analogy before, as it seems to make the most sense to me.  Often, I try to figure out what is going on with my son and find myself asking, “Which is at play here?  Autism?  Typical Toddler?  Or just Callum?”  I drove myself crazy doing that, trying to break him down into parts in my quest to figure out how to best help him.  And finally it hit me that I cannot analyze him in terms of one or another.  For he is all three.  He is at once a 3-year-old, an autistic child, and himself – Callum.

It’s like trying to take a picture with an SLR camera.  Normally, you can simply point and shoot and get a pretty good picture.  But, if you are in dim lighting, or there is a great deal of movement or distance, you have to use special settings and special lenses to filter and enhance the image.

Trying to figure out what motivates a special needs child can be complex.  To get a picture of that, you need three (or more) lenses.  You need the original camera lens itself to take a simple standard picture.  Then you need a second lens that filters for special needs – autism, Down Syndrome, etc.  You might need, depending on how many special needs conditions the child has, several such lenses.  Finally, you need a lens that enhances that child as an individual.  Because, like everyone else, special needs kids have their own temperaments, interests, fears, etc.  So, to get an accurate picture of a child with special needs, you have to take a picture with all three lenses at the same time.  For if you remove one of the lenses, the picture does not reflect the true child.

The problem is that some of the lenses we need still haven’t been invented.

So what do I say to my friends who honestly want to get to know my son but are hesitant about doing so?  It’s really simple.  Just ask me about him.  I’m all too happy to help you connect with him. I’ll tell you all about him.  Feel free to ask me what he likes.  How you might best make a favorable impression.  What might upset him.  And, then, just go for it.  Visit wearing comfortable clothes and get down on his level.  Take an interest in what he is doing and attempt to join him.  He’ll notice you.  Pretty soon he will likely begin interacting with you to some degree.  And, if you let him warm up to you, you might even get to roughhouse with him and get in some tickling and giggling.  He’ll love you, I promise.  And, if you are unwittingly doing something that might not be the best way of engaging him, I’ll be there to suggest another.  Soon, he may climb up on your lap. He will recognize you in the future and maybe smile when you walk in the door.  You will have made a special little buddy who will melt your heart.

And then you will have a clear picture of my child.  A child like every other –yet not.  A child who loves, laughs, plays, snuggles, fears, delights, and enjoys cookies as much as any other.  He may do all those things differently.  But he does do them.  And knowing him and forging a relationship with him will change both you and him for the better.  For not only is he worth you knowing, I happen to think you are worth him knowing.  :)

Now, let me introduce you to my child.  I think you two are going to like one another.  :)

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Dear Friend Whom I Haven’t Seen Much Of Lately

Dear Friend,

You have no doubt noticed that you haven’t seen much of me lately.  Maybe weeks, maybe months, maybe years.   I bump into you in the grocery store, and we always talk about getting together soon and about how ridiculously long it has been.  And it really has been too long.  I really have wanted to see you.  But I will admit that sometimes when you call, I don’t answer the phone.  Often it is because I can’t talk amidst a cacophony of banging, screeching, and crying.  Mostly it is because I have been standing there for some time trying to figure out just what it is that my child wants so badly, but doesn’t have the words to ask.  He’s upset, and there will be no conversation if I don’t figure it out.  I intend to call back, but because he has so much trouble going to sleep and staying asleep, I often just give up and hope for another opportunity.

But sometimes I don’t answer for no reason at all.  Yes, I swear I’m eating, brushing my teeth, and taking showers.  Don’t worry — I’m not that far gone.  I simply find it overwhelming at times to even think about making casual conversation.  There is so much to catch up on, and I don’t have the energy for that.  So, please believe me when I tell you —It’s me, not you.

But you probably already knew that.  I’ve heard the other end of the phone go quiet and then realize that I have been talking for a long time about my child.  It’s often the end of our time together when I realize that he has been the sole topic of conversation.  I don’t mean to do it.  I’m simply overwhelmed and leaning on you in the same way I used to about other sorts of things.  Except that worries about him are now a broken record in my mind.  I forget to ask you about your kitchen renovation, your vacation, what is going on with your sister-in-law, or your promotion.  And even when I do ask, I’m distracted and don’t seem to have the capacity for all the details.  I really do care about you and your life.  It is simply that there is only so much room in the active part of my mind, and right now it is taken up with him, his needs, and his myriad of  therapy sessions each week.

You are still the great, caring person you always were.  And I know that you mean well when you ask me to “bring the kids” to some get-together you are having.  I know that your feelings will get hurt when I inevitably decline.  But, you see, when everyone else is sitting back and laughing — watching their kids play in the pool — I am running around trying to make certain that my curious little tester of bouncing properties isn’t destroying your home.  You have a lot more knickknacks and breakables than me these days.  I’m trying to make certain that he is fed, because he won’t eat any of the child-friendly foods you so kindly have served.  And, because you don’t have a fence or child-proof lock on the exterior doors or safety gate on your stairs, I can’t spend any time with you while there anyway.  It becomes a stressful experience that I avoid like the plague.  And, even if I do get a sitter and come without the kids?  I spend my time feeling guilty about not bringing them.

So, that’s where I am right now.  And why I haven’t been calling.  I really would like to have lunch with you.  So, yes, please ask.  But I’ll need you to do me a favor.  Please give me several days’ notice.  Because I don’t want to bring the kids, and I need to make arrangements.  Please pick an affordable restaurant.  Because all these therapies, treatments, and special diets are costly.  Please let me go on a little while about my child.  Because it explains so much about the Me of Now.

And then be sure to sweetly say, “Now let’s talk about ME” and proceed to do so.  I can take it, really.  Sometimes, I just need to be reminded.  :)

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