Photo credit: Ashlie Inez
It’s not easy being your child’s advocate. To stand up against family or friends or medical professionals, to really get behind and tell your child: I trust you.
You, my child who doesn’t yet talk, but who smiles with such complete joy and happiness… you … I trust, you.
I will listen to you and to those smiles. I will listen when you cry and I will act on those tears. I will stand against everyone who’s not willing to believe in you, who’s not willing to understand and to get to know you.
I will do what you cannot: I will be your voice.
Yeah… that’s… that’s a pretty tall order, right?
No pressure or anything.
Not to mention, if you’re not a fan of confrontation, if it makes you uncomfortable, or, if you’re like me, you’ve shied away from conflict as much as possible your whole life… wow, is there a learning curve.
But… the good news is you can learn. One step at a time. One conversation at a time.
How, perhaps one time you didn’t interject fast enough and it wasn’t until hours (or days) later that you realize what you should have done instead. It’s this introspection, this willingness to look back and follow your feelings, what you liked, what you didn’t like, that gives you a new roadmap forward.
A wonderful friend once told me that this is a new skill and it’s going to be messy until I figure it out.
She was right.
But also, that idea that I don’t have to be perfect has made all the difference. It means that I can go out and practice and get better at it.
Better at being Kate’s voice.
I can (try) and give you some tips, some little bits that I’ve learned along our journey, but really, your path and your options will be different from ours. But regardless of what your path and your choices look like, I really wanted to say is that you’re not alone.
Not alone telling perfect strangers no. Or, even harder, our trusted core group. People who are on our side but who may not be in 100% agreement with us.
What do you do? Fall in line? Stand your ground?
The answer isn’t black or white. It’s not cut or dry. It’s different for each one of us, and different at each point in our child’s journey. Oh, and that point also moves, so, good luck hitting it!
But really, I think it starts with empathy.
Empathy for ourselves and what we’ve gone through, but also towards others. It’s taking a look at and understanding where this other person is coming from. Often, if family or friends, it’s from a place of love. For medical professionals, it’s a concern for our children.
I feel once you understand them, it helps you connect… and to get your own message and needs across. Sometimes this works, sometimes it doesn’t. And sometimes the best answer truly is:
No, to different evaluations or return visits or therapy that you know in your gut isn’t right for your child. In those cases, you call and cancel. (This is, of course, is with the caveat that every path is different for every child. Only you know what’s best for your family, and I’m all for it.)
For us, this is how it started.
We decided what early intervention offered was so far into left field for what we wanted for Kate and our family, that we said no.
And after cancelling those appointments, I’d run into well-meaning strangers who think that therapy is some magic pill that, as soon as your kid starts showing up, they’ll start talking and will be well on their way to being ‘normal.’ Then, there are those other disbelieving, opinionated parents that make the off-handed comment of: “Oh, you’ll wish she’d shut up when she finally starts talking.”
So… how do you handle those people?
Well, your answer will be unique for you and your personality. Me, the polite, conflict-adverse person that I am, have finally figured it out. Trial and error was required, but here’s mine (and to the person with the completely rude comment):
“I’ve waited four years to hear my daughter say, ‘Mom.’ Thank you, but no. You’re wrong.”
And yet, these strangers are the easiest to tell to fuck off.
See, I’d (silly me) thought that once I cut out the people from my life who brought in their negative judgments, who couldn’t see past their own opinions to actually see Kate, I’d be totally fine. Like, I would be in the clear. Life would easy and all I had to worry about was her and her progress forward.
Yeah… no. Not so much.
I am very fortunate and blessed that our family is on our side. They’re not pushing or probing, they’re trusting us and more importantly, they’re trusting Kate. A huge part is that we’re open and honest about Kate’s progress, about what we’re doing at home, all the speech play I do throughout the day. The work that our speech pathologist does with me (she coaches me and then I work with Kate). But the other part is is that I’m continually being Kate’s advocate. I’m reminding our family of her personality, of why she does things the way she does, and that we must just be patient and go at her pace.
And even the person I’m working with, the speech pathologist coaching me, she’s a medical professional with extensive experience with late-talkers… and just recently, I had to tell her no as well. And that was hard.
Really, really hard.
We’d ended a recent phone call and I was upset. I didn’t feel uplifted or ready to conquer the world. For me and my personality, I really soak in other people’s emotions. I’m a straight-up empath, through-and-through. So, if you have negative emotions or judgments, I literally take that inside me and it takes a lot for me to shove it back out. This, unfortunate for my husband, requires talking.
A lot of talking.
And he… listens.
It was after that phone call with this professional, when she’d started pushing for therapy again and even school services, which she knew we were very much against… and I slowly realized this all came about because of a misunderstanding.
That’s all it was. A misunderstanding. And yet, that emotion left me filled with turmoil and confusion, and honestly, hurt.
You see, it’s hard when you have someone, a trusted member of your team, suddenly do (what it felt like) a sudden reversal. Speech therapy does not work for Kate (she actually stops talking altogether). Seeking different therapy or school services opens the door for conflict and negativity, and for me, an incredible amount of anxiety because 1. I’m the empath described about and 2. oh, boy do I not like conflict.
And all that? Oh, you better believe that Kate senses it.
And, guess what?
All that effects her talking. All that effects her trusting in her words.
I had to process all these feelings, and really, this disbelief that she would turn around on us like that. But again, it was a miscommunication and once I figured that out, once I figured out what her concern was, I was able to find a way to get back on our path.
Due to scheduling issues and also Kate, feeling the pressure of when I recorded her (where she suddenly stopped talking), I was told to hold off on the videos. I did that. Our speech pathologist forgot. And when I reminded her, her urgency had changed from not putting pressure on Kate but to actually putting eyes on her.
I get that.
I get that she wants to be dialed in, with her pulse on Kate, to watch her progress and change course if something isn’t progressing or working right. (Or if we need to see someone else, medical-wise).
I told her everything about Kate’s progress; I journal and take notes every day. But this wasn’t enough. She needed the videos.
Well, I got myself a tripod thing (that looks like a spider) for my phone and that was enough. I got a good 30 minutes of Kate babbling and saying the words she does say day-to-day, and our medical expert was incredibly happy. Everything she saw was exactly what I’d reported. But, with Kate in particular, she needed to see all the little bits, all the looks and glances at me, sharing in her joy. How she played and how her play had expanded.
My point with all this is to say it was still hard. In fact, it was incredibly hard and, honestly, hurtful. Here was someone that I fully trusted and believed in, and was turning around and suggesting to do something that I knew was wrong for Kate.
Again, I had to stand up and be her voice.
By doing that, I cleared the waters and we’re moving forward again. I was honest with my feelings and what we wanted as a family. We will not always agree with her, especially when it comes to learning and moving forward as Kate gets older (we have chosen to homeschool her and follow her pace and progress rather than getting her ‘school ready’). Again, our choice, our path for this particular child.
I’ve realized too, that I’m not alone in that position. You think you really are in the clear when you find someone on your side, that you won’t need to stand up and walk those uncomfortable waters of conflict.
But what does happen is it gets easier. It gets easier to say how I feel and what I believe is best for Kate. It gets easier to find solutions to areas that I’m anxious and nervous about… for example, Kate needs her four-year check up. She’s hardly ever sick and we never need to see the doctor, and this will be only our second time seeing. And you know what? I’m afraid. I’m afraid of his negative opinion and judgment because he doesn’t know Kate. And, truthfully, I don’t know if he’ll care to get to know her. Our last pediatrician didn’t. All she cared about was her checklists. She didn’t care what I thought of, as a mother, and what I was seeing in Kate every day. She didn’t even take me seriously when I started talking about language disorders. All she saw was her checklist… even though she was admitting, right to my face, that Kate wasn’t actually following the checklist.
Except for the part that she wasn’t talking.
So, yeah, not so great experience with a doctor who’s known Kate since she was eight months old. I’m sure you can understand my nerves here.
I have options.
A friend, who’s also a doctor, recommend that I write our new pediatrician a letter before the appointment, telling him how I feel, about Kate and how far we’ve come. Also, our speech pathologist offered to make him up a video and evaluation about Kate. This way he also has a medical opinion weighing in too.
I understand his job is to see that Kate has the best care and getting the help she needs. My job is to show him we already are and everything we’ve chosen to do is the best fit for Kate. And really what I’d like is another person on my team. Someone I can trust, someone who’s willing to do more than just read off a checklist and send us off to one evaluation or another.
I’ve already had to stand up to this doctor once and truthfully I’m terrified he’ll look at her and not see the incredible progress she’s made. Because, again, Kate is not normal and her language is not developing like a typical four-year-old. But her temperament is such that if we push her, if we force her, she will not talk.
Push her, force her, and she will not talk.
It will be years before she does. I’ve already seen this in the brief experience we had with early intervention and with the private speech therapy we did, even at our own home.
So we absolutely must respect Kate’s feelings. We must respect her need to feel in control of her words. She will not use them until she trusts them.
This is a very long journey ahead of us, but it’s one I’m not afraid of. In fact, in my deepest of hearts, I already knew this. Right now, we’re looking at her talking closer to five, and I’m okay with it. I’m completely at peace. I’ve chosen to be on this path and to follow Kate on her journey, to help her however I can.
My speech pathologist warned me that people will start to push me with Kate. That, if they’d seen her recent video, they would push. And they would be very, very wrong. She told me as well, that I would have to say no.
I didn’t tell her that I already had, including her with our prior conversation.
Regardless, though, saying “no,” is going to take practice.
And it’s not going to be easy. It’s going to take practice.
It’s going take some creative thinking to protect myself from negativity and judgment so I can continue to stay in this place of joy and love. But it’s important to listen too, to keep an open mind and hear what others have to say… but the same is true for everyone else. When they meet me. When they meet Kate. When they hear about our journey and our decision to do it together. Keep an open mind. Trust that me, as a parent, know what’s best for this particular child.
I can’t make Kate talk.
What I can do is help her, in anyway I can, to trust in her words. To have fun. To play.
And that’s what I do, every day, every moment she’s awake. And you know something? That’s when the magic happens. And when it does, oh, my, it’s truly something else.
It’s a smile that came about because I chose to trust in her… and in myself.