A large portion of kids with tracheostomies, at least temporarily, lose their ability to make vocal sounds. Freya is no exception, and other than a few squeaks, we have not heard Freya’s voice since she was 3 months old. So today I thought I’d write about what it is like having a silent child and how we communicate in our household.
The day after her tracheostomy operation I remember looking at Freya and feeling such deep sadness when she cried with no sound coming out. I know I am both loud and articulate and it made me sad that my little girl had that side of her – literally – silenced. How would we ever get use to it? Very quickly it turns out. Freya was so medically fragile for her first year that it took all our strength and concentration just to keep her alive and to make sure we were getting everything in place for her at home that I don’t think we had time to dwell on her losing her voice.
We use a mixture of sign language, modern technology and pointing at things (angrily). Freya started having Speech and Language input very early on – when she was 6 months – and it has very useful. We use Makaton with her, which is simple version of sign language. The other, major, difference between Makaton and British Sign Language (BSL) is that Makaton is used together with spoken word, whereas BSL is a silent language. We opted for Makaton for two reasons: firstly as Freya is still very small so BSL somewhat out of reach for her. Secondly, Freya may well be able to vocalise one day. And in hope – and preparation – for that day we need to keep talking to her so that she can hit the ground running.
Freya also has an AAC device – an iPad with special software that she can use to speak for her. She touches pictures on the screen and the device speaks for her. At times she is spot on and communicates what she wants or makes funny comments like “oh oh” when she does some silly. Other times she shouts nonsense – pretty much like her peers (or mother, when you think of it). It is not easy to make sentences though – it is more about identifying key words. We hope she is going to learn how to write early on, so she can start typing and have the device do the talking for her.
So yes – for us, all of this is long term. Freya’s lack of speech is caused by the unconventional design of her upper airway and it is so crammed up there that her epiglottis rests on her upper airway, preventing the airflow around the vocal chords. In other words, the tracheostomy is in for the long term and it is unlikely that Freya could use a “speaking valve”, a special plastic ending to the breathing tube allowing patients to vocalise. The best we can hope for is that maybe one day, probably with significant surgical input, she will be able to speak. We just know that that day is still some years away.
Life is a lot easier medically these days. Most of the time I don’t even think of her not being vocal and she definitely manages to get her point through loud and clear. Occasionally we come across an early video of making noise and it makes me feel more melancholic than anything else. It is hard to describe, but the feeling slightly resembles to like the way I feel looking at a photos of me 20 years ago and feeling wistful about fitting into “those jeans” – it was great, it might happen again one day, but it is just not my reality (or even priority) today.
When it really sucks is when I realise she has been trying to get my attention and is crying silently in frustration. It also means that we do need to keep pretty much constant eye on her as she won’t be able to alert us if she is trouble.
Silver linings? Of course. Sometimes we hear a particularly loud toddler screaming and look at each jokingly remarking “that kid needs a trachy!”. There are no embarrassing “mommy says you are an idiot” type of truth bombs coming out of her toddler mouth. If the day arrives that she will talk we’ll be overjoyed – but in the meantime, like with many things with this crazy, medically complex life, we take it as it comes and live it with healthy dose of humour.