Parenting Children with Differences: My Journey

 

When you have a child who doesn’t fit in the so-called typical box, who walks to their own beat (or jumps or skips), or who just sees the world in these constant, vibrant and shining colors… your life as a parent becomes forever altered. Changed. It needs to be. Because these children, for whatever their unique reasons and differences, can’t be treated as a normal, neurotypical child.

That means us, as parents, have to change.

We need to switch around our expectations. Expectations we have internally, from the small ones like asking them to “go get a diaper for the baby,” or simply watching them interact and play with their same-age peers (including these increasingly social, complex interactions). Then there are the expectations society and culture has placed on them, like waiting quietly and patiently in line at Target, or the expected obedience of a two-year-old to stop turning on (and off) the Jacuzzi’s bubbles. And… when the two-year-old doesn’t listen, the stranger then takes it upon themself and threatens to put them in school. Never mind the fact that this is exactly what all two-year-olds do, or that this particular boy simply can’t understand the complex words — called language — coming out of your grumpy, old mouth.

As parents, we are expected to make our children listen, to get them to comply and attend. And I don’t know about you, but both of my differently-wired children really don’t give a shit about what other adults think or feel. Or their rules. (Though they tend to listen to my guidelines about what’s safe — because I’ve gone out of my way to give them as much grace and free reign so when I do ask them something, they generally comply.)

You see, my kids don’t fit into the “normal” box that society puts children in. I mean, I won’t even go into my beliefs that our current culture isn’t exactly welcoming to the curious, inquisitive nature of kids but I will say, the simple act of telling my kids something, and expecting (with the snap of my fingers), that they’ll listen… yeah. Not so much. Not for this family.

Which means I had to shift my expectations of what my kids can do… and then must tell society and strangers, to take a flying leap when it comes to defending them, or simply, just being their voice.

Like there was this one parent at the beach who told me: “I’m sorry I yelled at your daughter, but she’s not listening when I tell her to not put her dirty feet on the blanket.”

Me (speaking straight-forward, but definitely snippy because… this lady just yelled at my kid): “She doesn’t understand you. She has a language delay.”

Other parent: “Oh. I’m so sorry. I didn’t know.”

Me (thinking, but unfortunately not quite strong enough to say): Maybe you should really go for kindness first and ask why a child isn’t listening.

As parents, we need to have the grace, the trust, and confidence in our children, and in ourselves, to let them be different.

To let them be who they are.

That also means this constant battle of standing up for them, and at times deciding silence is the better course of action (like grumpy old man at the Jacuzzi). And this, my friends, takes a tremendous amount of courage and bravery. To stand apart from all our parent-peers, to accept our children for who they are, little quirks and sometimes big quirks, and love them.

Accept them.

Stand by them.

I’m not saying this is easy, dear lord it’s not. And for some of you, who really do have children with differences, who are harder to handle, whose emotions are incredibly intense, or who fall on the spectrum or another type of genetic disorder where the simple act of sitting up, the path you walk will be much, much different than mine. You are amazing parents, each and every one of you, and my goodness are your children blessed to have you.

But even with this wide, wide range of differences, I think there are a few things I can share from what I’ve learned so far, on my journey as a parent.

The truth of the matter is, we love our children. Our hopes and dreams were different than the ones given to us, the ones that came with our children. I mean, when I was a parent I never dreamed that I’d be writing all these blog posts about having not one but two late-talkers! I never dreamed that I’d be a homeschooler or someone who followed a respectful parenting approach. I thought my kids when they hit preschool age would be going off to school, and yet, here Kate just turned five and she would be going to kindergarten.

Going. To. Kindergarten.

Wow, is the thought a bit mind-numbing for me. I mean, there’s nothing wrong with anyone sends their kids to kindergarten, in fact, I’m very much in the minority on this one. But let me say this, Kate literally just turned five, so she, developmentally, is a whole lot younger than her other would-be classmates. But, here’s the kicker: her language is at the level of a three-and-a-half-year-old.

Think about that. Put yourself in her shoes. Going to kindergarten, already as one of the youngest kids there, and your language is still only at a three-year-old. And maybe you also have this type of personality where you need to be precise and accurate or you get extreme anxiety… and now here’s this teacher asking you to do something, like sit down or get out your scissors for some verbally, instructed directions on some art project. Can you imagine what that would be like?? And then not having the one person, your constant, your voice, there to help you interpret what your needs are or even what the heck you’re trying to say??

I’m not worried about the social and play aspect of kindergarten. Boy, let me tell you, this kid has got that part down. But the rest? It terrifies me to even think of Kate being in that situation. She’s not, though, because of me, because of Sean. Because she has a family who understands her and her particular needs.

Remember, what works for your child won’t work for her, and what works for Kate is not going to work for Eric or for your child with their own unique needs.

It’s all about the children, them and their specific needs.

But you know, it’s about us too.

The parents.

It’s about us as we face those hard, frightening, and dark moments. Our reality is that we don’t have neurotypical kids, kids who talked on time, who have great social eye contact and socially engage right on schedule. As parents, our reality is very, very different from the rest who have the “normal” kids. And I don’t know about you, but my early experience, especially with the medical professionals and early intervention, was, unfortunately, very focused on the fear, very focused on… “oh it’s so bad, your child’s not doing this or this or this.” It’s like, in their minds, you can have one kind of kid, the good and the “normal,” or the other, where they see your child as DOOMED.

I wish I was exaggerating.

And yet, it was because of those moments that gave me the strength to stand where I do now. To face those fears, the worry, that total blackness that can easily consume you if you let it… and choose instead to believe in your child.

To believe in them, for who they are.

And then, to stand there and tell the doubters, friends or family or certainly professionals, that they’re wrong. You see what you see, as a parent, and you know in your heart that you’re right.

And you stand by that because you simply know.

I write this now completely from a place of peace and of confidence in myself. My journey, as a parent, has been no less miraculous than Kate’s. From where I started, walking out of Early Intervention in complete tears, knowing that they were dead-wrong about my child, that they didn’t see the child I knew in my heart, the child I saw at home every day, that’s not who they saw. They saw instead a child who was willful, who was introverted, who wouldn’t listen… and who couldn’t understand them.

Not at all any fault of her own, Kate simply didn’t understand the words they were speaking. Not to mention the lady doing the testing was someone giving off all kinds of ‘I hate kid’ vibes and you better believe my emotionally sensitive child picked up on that.

I was terrified.

I didn’t know what to do, what options there were for me. All I knew was I needed to support, but not how or why or even what it was exactly that Kate needed.

All I had was her, and what I knew in my heart.

If you met Kate today, you never would imagine that the words “autism” were almost threatened around her. Never. Today, it would never cross your mind. And if you closed your eyes and simply heard her talk, right now, without even seeing her, you would think she was just a young child. Which is pretty typical of a language-delayed child… but one who’s completely happy, completely vibrant with life and joy.

And that success, that joy and happiness, that’s because of me, because of her dad, because we chose to walk a different path… her path. It was our believing in her that got us to the point. Our willingness to step outside the box, with her, and give her the help that she specifically needed.

And was I confident starting out? Was I sure and comfortable when we quit speech therapy and went to a consulting approach, where I was the one being coached?

Hell no.

I was super tentative, unsure, questioning everything I was doing. Sometimes I talked too much (not good when you have a receptively delayed child), or I’d talk with a question at the end… think of the up-turning of your voice to make it sound like a question or a query. Again, not good when you’re working with language delayed kids. The more questions you ask, the more they feel like they’re on the spot and they shut down.

I had a lot of learning to do. I had a lot of growing to do.

And yet… this is where I stand. At this point where our speech professional asked for permission to use my recent videos as a fantastic example to other parents with nonverbal kids.

Me.

Me, who started out so unsure and tentative, who was terrified of screwing up my kids. And yet, during our last consult call, our speech professional continually told me how wonderful I was working with them, especially with Eric, that we’ve created this fun, back-and-forth play and how incredibly patient I am with him.

Let me give you an example…

Eric’s playing on a blanket and I’m playing a tickle game with him. Eric loves the tickle game. I tickle, he laughs, and then I stop. And wait. I wait for thirty seconds. He’s looking around, at the ceiling, and then he comes back to me. He looks right at me and makes his “mhmm” sounds (which means “more”) or even takes my hands and pulls them to his stomach. And I immediately respond with more tickles.

Did you catch that?

I waited, patiently, for 30 seconds for him to respond. I trusted that he would come back to me, and he did. Because he loves this type of play.

What I just described is the essential foundation before any kind of language can happen. The enjoyment shared between us, that Eric is engaging and asking me to keep playing, the looking at me, the sounds he used for “more.”

If you didn’t know what you were looking for, you’d completely skip over the significance of that moment.

And you know, when I started, I didn’t know. But I learned. I learned and kept learning, and more than anything, I continued to be tuned in to what my kids needed, to who they are. I almost laughed when our speech professional complimented me on the video because a whole bunch of times I forgot it was even on.

I got lost in the play and the joy of my kids.

I was playing with them. That’s all.

Everything I’d learned has become so natural, so incorporated into our family and our life, I don’t even think about it. I can tell you too, the family members who spend the most time with my kids? They do it too, and they don’t even realize it.

They don’t realize they’re recasting or modeling.

They just do it.

Naturally.

I mean, as Kate moves more into complex language, I’m thinking best how to model language and recast to best help her, but all the rest? It’s natural at this point, it’s like breathing.

Again, I didn’t start this way. In fact, I didn’t know there were other options and explanations for children who are different, who didn’t just fit into the autism box that was being pushed on us. I had no idea there were actual language disorders when we started this journey, and for that matter, our first pediatrician didn’t know either (and when I mentioned it to her she completely discounted me — so I found ourselves another one).

And I say all this, that I’m in this amazing place of peace, and I don’t have answers yet for Eric. He’s still too young to know anything for sure… but I don’t need to know. Why? Because he’s showing me everything that matters… everything I described in his reaction to me, his engagement in play, in wanting to play… that’s what I need.

For right now, on this stage in his journey, that’s everything I need.

Eric is moving at his own pace, in his own way, and I can see that. I can see his progress and it’s been amazing — for him. I don’t need a specialist to look at him because I know, in my heart, they will only see the child they want to see. They won’t see him. They won’t know and understand the significance of Eric engaging with my mom in play, or his favorite, ten-year-old mother’s helper. They won’t know about this amazing moment where he completely engaged in a continuous play with this other mom while camping… playing peek-a-boo, hiding and seeking, asking her to pick him up (by holding up his hands) and then going limp because he wanted her to spin him. All that, without a single word. And this mom understood his cues completely. And he was looking right at her, smiling and laughing, completely engaging.

Those moments, just like that, are the little pieces we need to get to language. Little stepping stones, if you will, but not something you can see in a 30 minute consult. Or even an hour or two hours.

There are great professionals out there, people who understand where I’m coming from, the problem is you’ve got to wade through a lot of bad ones to find the good ones, and frankly, I just can’t have that in my life. I can’t internalize their thoughts and emotions (that is, unfortunately, the way I’m programmed).

What Eric needs, is me, to believe in him. To be focused and engaged and open. Because this kid can sense all that negativity. He knows darn well when I’ve got all that swirling around inside me and oh boy does he shut down fast… and then he has an even harder time dealing with his emotions.

And my speech professional totally understands. She agrees with me, agrees with my decision that’s best for Eric.

But even with her I had to stand up for Eric last time we talked. I had to explain what she didn’t see in the videos… that no, he doesn’t orientate to objects more than people, that it was my fault because of the videos I’d chosen to send her. And you know what, during our latest conversation? She didn’t bring it up one time. Didn’t even mention it. Not once. Instead, she told me how much happier he seemed, this content little boy. He wasn’t agitated like he was in the past.

I told her Eric had been growing, that he’d hit his middle-twos and had this just amazing amount of frustration because he couldn’t communicate (along with his darn stubbornness to not actually be clear with what he wanted in the first place). This was very different than what we experienced with Kate. For her, it was like a puzzle to figure out how to communicate what she wanted. With Eric, as his awareness of the world expanded, he would just go from zero to sixty in the frustration factor. And it’s getting better. Little tiny steps for sure, but the more I focus on our little successes, the more content I feel with where we are… right at this moment.

I am a very, very long way from this journey being over.

With Kate, we’re looking at continuing to help and support her as she moves into more complex parts of grammar, at reading and education (for us, in a child-led way). With Eric we’re just continuing to move forward with where he’s at, encouraging play that needs our involvement in order to be fun. To help him trust in the sounds and the words that will eventually come.

But the truth is, I know who he is and I trust in that, I trust that he’ll keep guiding me, pointing me in the direction that he needs me to go… regardless of where we’ll end up.

And that’s what I like to remember most of all:

There’s a reason these children were given to me.

They came to me, and no one else, because I was the person most equipped and able to help them, to understand and empathize with them. Me. What a gift I was given, and the more I’ve shifted my thinking to this, the more I’ve grown and learned as a parent, and also as a human being.

Kate opened up my world to being different, to raising a child who sits on top of her own box, who walks a different path and is still completely beautiful, completely her own person. And because of her, she opened the door to be the parent that Eric needs me to be.

But the real truth is that I didn’t get to this place overnight. It took a lot of work, a lot growing, and a heck of a lot of trust on my part. But I am here; I am in this place of peace and confidence.

And you know something? I’m really, really looking forward to seeing the path Eric takes me on next. It will be different, but it will be all his.

I can’t wait to see what our journey, together, will look like.

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