Another Kind of Box: My Journey with a Late-Talker

 

img_2764

So many people take one look at Kate or hear our story and make judgments. Assumptions. They guess as to what’s going on because of something they’d heard or read. This was also true (from our experience) even with medical professionals who only cared about following a checklist and marking the “red flags.”

And, not kidding, someone just recently asked me if I had fed Kate cow’s milk because that’s totally why she’s not talking.

I mean… seriously??

You’re literally not going to ask about this two year journey we’ve been on and you’re immediately going to jump to the conclusion that it was cow’s milk? (Not to mention that no, Kate doesn’t drink milk. We drink water in this house. And alcohol… for those of-age, anyway.)

But it’s that kind of blatant rudeness I’ve gotten as a parent. Since the day we started this journey, since it became slowly apparent that Kate’s speech was delayed compared to other children her age, I’ve felt other people’s judgment and rudeness. The farthest thing from kindness and love you could ever expect. And everyone was an expert on Kate.

They all knew what was wrong with her. They all had an opinion.

And no one actually gave a shit about what I thought. That, hey, maybe I actually know this child best since, you know, I’m only with her 24 hours a day, 7 days a week. But what the hell do I know?

Everyone discounted the feelings I knew in my gut, feelings that I knew through my entire being, that there was nothing “wrong” with Kate. She was who she was, and that was okay with me.

And yes, I can see how this blog is starting to feel like a rant, but hang in there… it’s not.

You see, both Sean and I were okay allowing Kate to take her time, to help her and guide her, to try different avenues for her to grow into talking in a way that was comfortable and safe… for her. We tried Early Intervention and private speech therapy, and they both were not the right fit for Kate. We tried at-home play with me, while I got coaching and guidance from a very knowledge person on late-talkers, and it turned out to be the perfect fit.

But so many, many people wanted to fit Kate into a box.

They wanted their idea of her to fit into their box with its clean edges and following the right kind of pattern. And because she didn’t talk and had anxiety around adults she didn’t know, oh… well! Let’s just go and check off six boxes from the checklist right there and call this a done deal.

If you couldn’t tell, this was a difficult journey for me. It felt like Sean and I were the only ones standing on this hill and fighting off the naysayers and doubters with only a stick. To me, the stick felt tiny. To small for what we were facing down. But now… now, I know that’s not true, especially if I look at it from Kate’s point of view.

As her parents, with our Big and Mighty Parent Stick.

Standing in the way of each of those people and telling them no.

No, you’re wrong about her.

No, you don’t know.

But we do.

We’re her parents.

And to be honest, every time I heard someone else’s opinions or thoughts or judgments, I had to spend a great deal of time and energy flushing them right back out of my system. In fact, I still do (as evidenced by someone’s stupid-ass cow’s milk comment).

You see, Kate needs me whole and present. She needs me focused on her, with all my love and trust, on her. Not filled with other people’s opinions.

I recently had to tell a friend this. A friend who I was quite close with for many years, but that I couldn’t have her judgments and opinions in my life right now. I was fine with questions, please, please ask me questions, I want to talk about Kate, I want to spread the message that kids are different. But I told this friend, if she couldn’t just be supportive and loving, that I was sorry. I couldn’t have her in our lives right now.

I haven’t heard from her since.

But this is the way I’ve learned to protect myself. To protect the part of me that plays and cherishes Kate, that part that believes in her, completely and fully. Sean, though, I swear he’s got this will of steel because he never has a problem telling people to fuck off (which I greatly envy).

You see, there were days, especially early in this journey, where I did go on Google, hoping for some little window, some glimmer of hope to shove away some off-handed, insensitive comment a parent had made to me. But all I found was one devastating article after another, each one telling me, in their own way, that I was wrong. That late-talking children almost always meant autism and it was very serious and you better seek professional help. Immediately.

Each one of those people looked at our children as if they all fit in one box.

Well, you know something?

They don’t.

My little girl, just over four years old at this point, is living proof of someone who went and created her own box and that’s why I’m writing this blog post. I want to show everyone what a different box can look like. I want to share who Kate is, to share the journey we’re on with her, and just maybe, a beacon for another parent somewhere down the road who’s afraid and desperate and just wants to know that yes, there are other answers. That yes, children can be different.

Unique.

Because, they are.

Completely differently. Whether they’re square boxes or circles or triangles. Whether their box is pink or a jungle green. Whether the child is so full of life and energy that they just straight up don’t belong in any kind of box.

And this is just one child’s story of being different.

For two years, I had only what I believed in, what was in my heart, to guide me. I didn’t have these answers. I didn’t even know about children being natural late-talkers. My pediatrician never mentioned it. Or Early Intervention. Or the neurologist. Not even Google.

I found the explanation in a book by Thomas Sowell, which lead to me Stephen Camarata, and eventually a Facebook group of hundreds (if not thousands) of other parents of late-talkers. And from there, I found Mary Camarata who was finally able to give me answers. But in truth, a lot of it was Kate just needing time. And love.

Time to grow and mature.

Time to feel safe and comfortable with trying to talk.

As Mary Camarata recently told me, “Kate can talk.”

It’s not a matter of her ‘not being able to talk’ but a matter of her feeling incredibly anxious and uncomfortable because the words did not sound right. They did not come out sounding perfect. And that, ultimately, is Kate’s biggest issue: her temperament.

Kate is the kind of child who, if she is not completely 100% sure of something, she will not do it. If she cannot be precise and accurate and perfect, it is incredibly stressful for her. We’re talking super high levels of stress.

She does not like giving away her control, like an adult family member suddenly showing up to join us at Disneyland. She has no say in that. She has no control over their presence. So no, she’s not going to smile at them and wave like a ‘normal’ child would. Nope. Instead, she’s going to bury her head and hide.

Or, as I realized what happened on Halloween, she’s going to cry in my arms for an hour. She didn’t have time to grow comfortable with their presence and were instead, in her mind, thrust onto her. And she had no words to express this incredibly overwhelming feel of stress and feeling unsafe.

But back to the talking aspect and Kate’s temperament… when you try something new, for the first time, it’s not perfect. Language, and to speak, requires practice. It doesn’t come out sounding right, and it’s not supposed to. Again, this takes practice. But what about a child like Kate? Someone who feels this incredible amount of stress when it’s not accurate?

Well, she just doesn’t do it.

At least, not until she feels safe and comfortable. It’s like this invisible line that she’s been putting her toe over, and then back again for the past year. Little, tinsy, tiny steps before quickly pulling herself back to safety on the silent side of the line.

And if you try to push a child like Kate? Try to use prompt or withholding techniques that some speech therapists do? Oh forget it. Kate will dig her heels in harder and Will Not Talk.

There is no forcing this kid.

Zero.

All we can do is support and love and tease out that wonderful little smile of hers and tell everyone else to go fuck off. We got the support from an expert, to guide me on where we need to go next, but you better believe that I’ve stuck to my guns even with her and told her no at times. Because I know Kate. I am so in tune with her I know when she’s being pushed too far and what will (and won’t) work.

But having this little piece of Kate’s puzzle, knowing that her temperament and the anxiety she feels when not in control, has been huge for us. It’s answered so many questions, like on Halloween when she was so upset she couldn’t talk or even nod her head yes to go home.

But if you’re someone new, a doctor or neurologist, in this unwelcoming examine room, suddenly directing this particular child, who to her, control is everything, and almost demands that she do only what they want and at that second they ask for it? Yeah, you can guess Kate’s test scores aren’t going to look well. In fact, they’re going to be dead-wrong about her simply because she’s refusing to participate (or even look at the person doing the test, or heck, even look up when I call her name).

Again, this a story of a child who doesn’t fit in any box.

She’s instead made her own.

Kate’s biggest issue is one of behavior. The anxiety she feels rivals those of someone with selective mutism, but Kate doesn’t have that (that would require her to talk in one setting, just fine, and then not in others… Kate just doesn’t talk much, even at home).

Now, we do know that Kate has a receptive delay. The language she hears, and understands, falls below even the low range for a four-year-old. But because she’s very bright, because she can hear words she knows, and gestures and context, she can piece together our sentences and figure out what we’re asking. But… if the sentences get too long or if we’re throwing two and three verbs in a sentence? Kate will just shut it down. Her anxiety will peak up and she’ll tune us out. She knows she has pieces of the sentence missing and that makes her uncomfortable.

It’s no surprise to Sean and me that Kate has MERLD, which means, Mixed Expressive Receptive Language Disorder. It means she’s got a delay in the talking, and the understanding, of language. And because she doesn’t have language yet, the social part of a normal developing four-year-old is also behind. She can’t have normal, meaningful relationships because she doesn’t have words. So, Mary Camarata also diagnosed her with Social Communication Disorder.

Again, neither of those two were surprises and that alone tells you right there, that it’s right. It doesn’t make me want to go and brandish my big stick and starting knocking people’s heads. Because everything Mary said about Kate, fit with who she was. Everything aligned with what I’d always known as her mother… even though so many people didn’t want to believe me.

And at this point, I don’t care about those other people.

Well… I still do.

It still cuts me and hurts me to have a friend not reach out and try to reconnect after I was open and honest about my feelings. It pisses me off when some person I don’t even know comes to me with her cow’s milk bullshit. But it’s a lot easier for me to move on. It’s easier to shrug those feelings off my shoulders and out of my life. Because they don’t matter. Only Kate and her progress matters.

And that’s the true joy I’m feeling these days. For two years, I’ve had to go on faith and belief in Kate, but now I have answers. And more than that, I have Kate finally feeling comfortable.

She’s talking.

Not a lot, certainly not compared to most kids, but when I say to her, “tell me,” she does.

She will say, “more.”

Or, “ice cream.”

She will say, “all done” or “help me.”

Or she’ll go and bust out a whole new phrase like, “let’s go home” or “I’m gonna get you.”

We are at the point where she’s saying words in front of other mothers and their kids, and these mothers are coming to me with a look of amazement and excitement on their faces. These are the people I’ve chosen to surround myself with. People who are supportive and cheering Kate on. People who’ve been asking for this blog post because they want to know what we learned from our evaluation with Mary Camarata.

I learned so very much.

But at the same time, everything I learned, I already knew. I’d just known it as a mother and not in words that will make our doctors happy and content to let us carry on at our own pace.

This is a story of just one child and the little box she went and made for herself, and hopefully to other parents out there, as a sign of hope that there actually is a lot more going on with our children. It’s not just some cut-and-dry answer and really, we’re not even going to know what that box looks like until they deem it the right to time to even show us (which often correlates to time and maturity).

That was the one thing Mary Camarata told me. Right now, Kate just needs time. She needs time to play and have fun. To continue to grow and trust in her words.

In her own little box.

No one else’s, but hers.

Leave a Reply

Your email address will not be published. Required fields are marked *