On Introducing My Special Needs Child

Lately I’ve been wondering what is the best way to introduce Nafe to a new person? The best way for Nafe, for me, and especially the person I’m introducing him to for the first time.

Part of me wants to say, “Hey, this is Naffer, he’s 20 months old and he has special needs.” Just blurt it out and get it all out there. Part of me wants to avoid the whole thing all together. Instead of risking someone asking the question “How old is he?” just tuck him safely away under a blanket in his stroller so he looks more like an infant than a toddler.

His small head confuses people. Their looks often linger longer and their smile is half-full. Because of their tempered response I often feel obligated to launch into a big, long explanation of why he looks different. I don’t know if this is helpful or not? Because after I give people more information – he has a genetic deletion syndrome, he’s developmentally delayed, he eats through a feeding tube, he has lots of medical issues, etc. – they don’t always know how to respond.

We met up with some friends at a restaurant a few weekends ago. It was a gathering that involved some people we knew, and who knew of Nafe, and many who did not. It didn’t take long before I was answering questions about Naffer and explaining a little about who he is. One of the people at our table offered to hold him and relieve me so I could focus on big kid a bit more. Of course I wanted to have someone else love on him, but the hand-off was clumsy because his feeding tube got in the way, and he’s difficult to hold because of his low/high muscle tone issues, and then worse, he started giving this nondescript face that could have been an ear-to-ear smile, but was actually the beginning of a big cry. He didn’t know the stranger who was holding him. It was a pretty pathetic, sad face. I know this person felt awful as I took him back.

It would be easy to say that whole interaction was a total fail, but it sent me thinking of ways I can help people understand Naffer better. His facial expressions are generally flat. His movements are unusual. His eye contact is so intense at times that it can be intimidating.

The biggest thing you need to know about Nafe is that he’s just so fully him. Meaning he may not be doing the socially and developmentally appropriate greeting, but he’s doing whatever he’s compelled to do. Usually it’s to proceed to chew on his already sopping wet toy because oral satiation is number one priority. Or, its to stare deeply into your eyes and study your face with absolutely no smile nor frown. He is the most observant person I know. He commands silence. He’s fine with it. He likely needs it to process things in his own time. And he doesn’t care if you’re uncomfortable, so you shouldn’t either. (Easier said than done, right?)

So as I’m stumbling through this whole process of introducing my son, let me share with you things I’ve learned so that maybe it will be a little easier for you if and when you meet him.

1) He will probably not smile at you. He’ll likely look you in the eyes and not look away. You can either smile or not. Look at him or not. But if that makes you uncomfortable–like he’s evaluating whether or not you passed the test–you can just small talk to me for a little bit and give all of us a chance to warm up.

2) He may or may not wave. Part of me wants to say “Nafe wave!” but he doesn’t do what I want him to, especially on command. You however can wave at him. He will for certain understand your greeting. He will know that you are friendly. In return, look for a very subtle wave of his fingers together. Often his hand isn’t held high for a wave, but is down low. If I notice it, I will point out to you that he’s waving. That’s sort of a big deal for me.

3) He may eventually click his tongue or smack his lips if we’ve been talking for quite some time. That’s a kiss or an expression of acceptance. If you hear that, you can know that he’s warmed up to you. You can freely interpret that as “I love you.”

4) His smile and his sad face are the exact same. This one is still challenging for me and I’m his mother. Sometimes you think he’s sad but really he’s smiling from ear-to-ear. Both expressions only last seconds so if you miss it don’t feel bad. Also, don’t let this scare you away from holding him. He is going through a separation anxiety phase right now, and with a little love and patience, he does grow comfortable with new friends.

5) It’s okay to ask questions if you’re curious. I won’t feel uncomfortable. Sometimes, it’s more uncomfortable for me if I think people are wondering things but are afraid to ask. I don’t want to make an assumption that you want to know more.

And hey if we strike out on all five of these you can always talk to big kid. I’m sure he’d be more than willing to entertain you with his latest silly story or karate moves.

I’m learning there’s no good way to avoid the awkward. It’s always going to be awkward in some way, for someone. People tend to expect typical baby smiles, squeals, and waves from him. When they don’t get what they expect, they feel the need to make up for his lack of responsiveness somehow. Sometimes I do too. But I’m already weary of making cute little excuses for him that may or may not be true: He’s just tired. He just wants his mommy. He worked too hard at therapy. Perhaps if I can figure out how to be more comfortable with Nafe in public, then maybe it will help others be more comfortable too.

When you meet Naffer you may not think you are getting much of a response. And you may not see a response, but there is still a lot going on in his little mind and heart. His response –his gift really–is in his being fully with you.

It’s nice to meet you too.

The LORD does not look at the things people look at. People look at the outward appearance, but the LORD looks at the heart. – 1 Samuel 16:7

My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!

Also be sure to check out my list of Favorite Books on Disability!

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