Today Sophia had a meeting with a speech and language therapist and I thought it might be good to share some of the feelings that come with that for anyone that may find themselves in a similar situation or is interested. I refer back to one of my first ever posts on social media about learning that Soph had down syndrome. It is not something I (we) expected to have to deal with and some of you that know me may remember the whole ‘not being put in a box’ thing too.
It is a strange place to find yourself as a new parent and an even stranger place to find yourself dealing with something you don’t really understand - especially when it comes to development. You eagerly read about milestones while pregnant and have a bit of experience maybe with a sibling or bouncing a friends baby on your knee and; if you are that way inclined, you yearn for a baby of your own and to experience all those firsts.
I watched Soph today interacting with the speech therapist. This super bright kid who can communicate so very effectively without a lot of speech - but somehow the lack of speech still seems to come as a surprise to me, stealthily sneaking up behind me whenever I am forced to face it and I find myself panicking that i’ve done something wrong to hinder her development or that maybe I should’ve learned more makaton or that maybe I’m not speaking clearly enough. Or that maybe I just can’t teach her. The feelings of guilt and I guess, a bit of helplessness run through you for a moment and you think, sh*t, can I do this? Can I get this right? I am talking from my perspective though Andy shares and has his own insights - i’m purely stating my own feelings when it comes to this subject.
I nod my head while I listen about things like spontaneous conversation, linking words, using pictures for prompts, signing…. But inside, inside I’m thinking how on earth does this all work? How does her brain interpret speech? Does she think like me? Does she form ideas and sentences in her head but simply can’t vocalise them? Will she ever do it?
I think it’s important to share moments like these as I share a lot of ‘can do’ attitude things because, when it comes to Sophia, I truly think she is remarkable and ‘can do’. Clearly demonstrated in my posts. But I also think it’s just as important to share the worry and the self doubt behind the scenes. Sometimes it can feel incredibly lonely despite the amazing network we are so very lucky to have. Because the battle ground is your own mind. Your thoughts are your responsibility and sometimes, quite simply, they are a liability.
The self growth surrounding Sophia’s time with us to date has been something I reflect on quite often. My impatience has (mostly) been replaced with patience, I have been enlightened in my understanding of beautiful souls that roam this earth in anything other than ‘typical’ states of being that maybe aren’t ’efficient’ in the modern sense of what we require for our western economies and I truly value the ability that we all have to communicate without words.
Isn’t that strange? You can understand someone so well that words are not even required. Case in point.
We go onwards in our journey with Sophia leading the way - as always - shining bright. I hope one day she reads these posts and blogs I put up and says, flippin heck Mum, you were a bit dramatic. I can talk you under the table. 😂 I share my thoughts as it may help someone, it also helps me organise my own thoughts as I write. Ultimately the fear for Sophia is always only ever for her to have the skillsets she needs to have a good life on this beautiful planet.
For those that are new to having a child with Down syndrome or you’re where we are, these are just moments of self doubt - probably like every other parent out there. Just different challenges at different times. I will always, always, count my lucky stars that Soph chose us, I mean, just look at her. 😍
Lots of love,
Vicky
Owner and Founder of The Northern Angels