Its OK to be slow as long as you don't stop
"Why does she not seem to be making progress with her speech like we did at her age?"
I asked this question to Faith's speech therapist at our last session as it has been 5mths since her switch on and my husband was getting anxious to why she wasnt making as much progress as some people expected her to, as to why other children of a similar age as she was who also were implanted but yet seemed to be making huge strides with regards to speech. I am very patient & from my expeirence with Roo I know how slow progress can be, how the longing for to see that progress come but yet seem to be still out of reach. My husband on the other hand is less patient and worries more.
The speech therapist explained how that as Faith had only been "hearing" sounds for 5mths that we had to think of her as a 5mth old baby rather than a 23mth old. So most 5mth olds start to babble , make noises etc which is exactly what Faith is doing. This makes complete sense but I then asked why even though she had worn hearing aids since she was 7wks old until her operation at 17mths old that she had not progressed at all? We were confused as myself and husband were born deaf and also wore hearing aids yet we both could speak by the time we were 18mths old so why couldnt Faith. The speech therapist then said -
"She has had no sound until she was switched on at 17mths old"
Wow...I did not expect that answer but it confirmed that my instincts were right. You see she had never reacted when her aids were switched on, over the coming months she never reacted to sounds yet the audiologists kept saying yes she is, she is only severely deaf so she is benefiting from the aids. I was convinced she was profoundly deaf and didn't trust the tests where they said her foot moving was a reaction which I didn't believe as she makes the exact same movement when she sees something she is keen on. I kept saying how digital hearing aids were no where as good as the analogue aids that myself & husband grew up with. Sound is so much better with the analogue aids but I was fobbed off as usual that they knew better than me as technology was more advanced and because I was deaf myself & the aids didn't work for me didn't mean it was the same for her but I knew...we decided to go ahead with the assessment for CIs and the ABR showed that Faith actually had a profound hearing loss and not a severe loss as our audiology department insisted she had so we knew the aids were not benefitting her so we went ahead with the implants. But this was the first time a professional confirmed that in fact she had never got any benefit from the hearing aids and it shows in her speech delays.
Even at her switch on she hardly reacted to sound but we now know that she just didnt know what sound was & what she was supposed to do or react to it. It took a good 8wks before we saw a clear reaction to sound...now at 5mths down the line she is showing so much more awareness and its amazing to watch her. Last wk we had workmen in fitting a new bathroom and they started hammering and all of a sudden Faith turned to the door then looked at me with a curious look and signed "where" I was so amazed as she heard something from a distance and reacted to it.
We do a lot of sound work with her daily to encourage listening. Speech therapist advises us what to do with her to help. One of those is doing the "ling" sounds with her daily which is a sound which is linked to a picture. There are 6 and they are -
Mouse - "eeeeee"
Crocodile - "aaaaaahhh"
Ghost - "ooooooo"
Ice cream - "mmmmmm"
Snake - "sssssss"
Baby - "shhhhh".
Six different sounds and she has done the last two sounds which is fantastic, she doesn't do it all the time when shown those objects but she has done it and we know she can. As she gets older she should become more consistent. When with the speech therapist or with her TOD (teacher of the deaf) she sits and tolerates the sounds they make but if her daddy or myself make those sounds she gets the giggles!! No idea why!
Seeing videos of other children who have been implanted the same time as Faith or some even more recent starting to talk does make you wonder why she is taking longer but then we think of how much progress she has made in the last 5mths and its amazing...we have now accepted that its gonna take her much longer than most children but thats OK as she is still able to communicate with us through BSL. I am so glad we made the decision to teach her BSL from a baby as its really helped with frustration as she is able to tell us a lot through sign and its made us realise she actually understands so much despite not being able to speak.
We want her to speak, we want her to be like us, to have the benefit of both speech and sign. Its just gonna take her a lot longer and a lot of therapy to get there.
"It doesnt matter how slow you are as long as you dont stop."