Today I want to share with you guys the recent update on my daughter’s communication delays and get into a broader conversation around milestones, comparisons and all that jazz.
Don’t start getting upset with me, I know that milestones are very controversial; I myself made a video a few months ago about the unnecessary pressure that many mamas have with milestones. Just bear with me 5 minutes!
First, let me tell you what happened: one morning, in the community of parents of children with Kabuki syndrome (which is my daughter’s syndrome), a parent was expressing their concern because their 2 and half year-old child was only saying 2 words: mum and dad.
So many other parents were commenting expressing their sympathy, while sharing their stories: sometimes their kids were still just saying 2 words when they were 4, or 5 years old; sometimes they never become fully verbal. Sometimes they find beneficial to be around other children, and they slowly improve their verbal communication.
Every child has their journey, of course, but sometimes, when you have a child who has such a special and complex journey, it’s helpful to vent out in a community of people who are experiencing a journey similar to yours.
Coincidentally, on that day I had to create a list of all the words and approximations that Beatrice, my little girl, can say at the moment and this was for the speech therapist.
I’m there, I’m counting between 15 and 20 words, and I’m seriously impressed by that number.
“My baby girl is a genius!” I think. And then I get an idea. I’m tempted to see how many words kids around 2 years of age can say.
And while, right now, you are thinking: “Don’t do that! Don’t open that door, Minie! You don’t need to know”, I was convinced that yes, I needed to know. I wanted to know. I was sure that my baby’s number was absolutely in line with the range of any other normo-typical, healthy child.
So I did it.
I googled “how many words do 2 year olds say?”.
And I found that, by age 2, most children say between 50 and 100 words.
You can imagine how I felt.
First of all, I felt stupid, because you all told me not to do it, and I still did it. Hehe, I’m joking!
But yeah, I felt stupid.
I also felt incredibly confused, because once you get to know these numbers, then you have to interpret them. So should we compare to the average numbers of most kids? Should we compare to Kabuki numbers?
Finally, I just felt incredibly proud, because you know what? My baby is able to say around 20 different words and she worked hard for that number.
We have to remember that:
She has had a massive heart surgery at the beginning of her life and she’s been intubated (which doesn’t happen to most kids)
She has been tube fed for 14 months
She has a high-arched palate which is still moving
She’s growing in a bilingual household, so she hears things called in 2 different languages
She has hypotonia, so among all the other delays that this causes, for her it’s much harder to move all the muscles that are involved in feeding and speaking.
She is doing great. Period.
But! Yes, there’s always a but, when you deal with me. I want to go deeper and see all the aspects of this topic. Sorry, that’s who I am.
On one hand, this whole experience has helped me understand how to phrase the whole aspect of milestones in my head.
I want to rewire my brain, to better help my daughter.
If I say: “Other Kabuki kids say 2 words. She says 20. Typically, kids of her age say 100” I am ending my thought with the number 100. And she only has 20.
Instead, I want to say: “Other kids usually have between 50 and 100”; and here I am already acknowledging that there’s a broad range of what is considered typical.
Then I continue: “She has 20. What is very common in Kabuki is 2”; I give myself the chance to recognise how well our daughter is doing, for the syndrome that she has to cope with.
I visualise the set theory. On one side there is the set of kids who don’t have to co-exist with a syndrome. And they are all doing great. Some of them are more chatty, like me, some others can listen more and will become amazing husbands!
On the other side there is the set of kids who have been given this buddy called Kabuki syndrome, and this buddy sometimes wants to talk on their behalf a lot, so they end up being all great listeners.
My daughter belongs to this set of kids and she’s already showing that she couldn’t care less of what buddy she’s been assigned to, because she’s already very chatty, for that set.
Hehe, that’s my girl!
Another thing that I learned is that I’m upset because as special needs parents we are constantly bombarded with the milestones of what most kids do.
Hospitals, doctors, allied health professionals, schools; they all compare and assess our children according to the set of typical children and this frustrates me so much.
Why do they always have to compare our children to milestones and charts that they already know we most likely won’t meet?
It’s like giving to an amateur runner the records and standards of Olympic athletes. How do you expect us to stay motivated? How do you expect us to change the narrative for our children and make it more inclusive if, since birth, our kids have been positioned on charts and questionnaires that will constantly remind them how they will not fit in?
They should consider the growth chart of most kids, and the growth chart of the syndrome. They should measure her communication compared to the set of most kids but also, and more importantly, to the set of kids who live with a similar condition.
I want to teach my girl that it is good to know that there are people who do 100. If you want, try to achieve 50, 70, 100; I won’t stop you, girl.
But also know that there is 5, there is 2, there is 0.
And we love her, no matter the number. We support her, no matter the number. We have fun together, we teach her values and, who knows, we’ll also ground her when she’s naughty, no matter the number.
But this doesn’t mean that numbers don’t exist. Which is the third lesson that I learned.
It’s still important to have these comparisons, now and then, simply to give a direction to our efforts.
It’s good to crunch numbers, because knowing how she’s developing in all aspects of her life helps us realise if we should focus more on techniques for communication, or activities for gross motor skills, or games to boost her memory. The motivation behind it is simply to give us a trend in the developmental aspects that apply to us. If it doesn’t apply to us, that milestone does not matter.
That’s the only opportunity I’m seeing in generic milestones. A rough idea of what is expected when kids don’t have a buddy as demanding and complicated as a rare syndrome.
Should we have also comparisons within the same condition, or at least, within a set of similar conditions? Absolutely yes.
Do we have such tools? Most of the times, no.
But that’s why we should talk about these topics more often, that’s why I love the idea of being a community that shares the actual wins and roadblocks of our world.
Because if we don’t, we will always be compared to the wrong set of numbers and scales.
We will always be a marathon afficionado who gets compared to a sprint runner.
With this in mind, I will go back to listening to my gorgeous girl who, in no time, will be able to swear in 2 languages. Bua-ha-ha.
I will also prepare the next blog post, where I will share with you the story of the nurse that I hated on Christmas day. If you don’t want to miss it, don’t forget to subscribe to my website and leave me your feedback!
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