FINDING HIS VOICE

So when my little boy turned 2 and the only word he could say was ‘mamma’, I was concerned. In truth, I knew something was not quite right at 15-18 months. There was no baby babble to communicate with us, no soft cuing, just grumbling and finger pointing, and some very cute infectious giggling.

We waited until he turned 2 to see if ‘something would happen’. Well, it didn’t, so at 2 years and 2 months, my son was non-verbal (apart from the word mamma) and we went to see a speech and language pathologist (SLP). In short, he was not the SLP for us. After two sessions, he said my son had a speech delay. The strategies he wanted us to implement were honestly out-dated, felt weird doing and were ineffective. So we had to find another SLP. It felt strange doing this because I was not the expert here, but I went with my gut. I wanted someone who would be hands on with my son. We got onto a new SLP who was fantastic – a little unorthodox in her approach – but had built a wonderful professional relationship with my feisty little 2 year old. It was very evident she had worked with young children before. She knew exactly how to handle my adventurous, cheeky boy; she set boundaries and most importantly, got him to start that all-important babble talk. I couldn’t believe it. Within a few months, my son had gone from saying nothing at all, to babbling! It was very emotional to watch. It was emotional to see him struggle to say the sound /b/, it was difficult to watch him nod his head when practicing the sound /d/, thinking he was making the sound by doing that action.

Although my son could not form any intelligible words at this stage, he understood everything. His receptive language skills were, and still are, on par with his typically developing peers, but his expressive language skills were terribly lacking. He would point to things and pretty much mumble sounds to ask for something. His SLP’s main concerns at this point were ensuring his needs were being met and reducing, if not eliminating any unnecessary frustrations that can come with not being understood. She had me put up pictures around the house of things he likes to do – and eat in particular – so he could point to them. She immediately got me on board with homework, which consisted of repeating the assigned sounds over and over and over again. The thing with CAS is a person needs to hear and practice the sound/word many, many, many times, as CAS affects the preparation and programming of actions required for speech, so the more they repeat and practice, the easier it will be to make that movement and to generalise that same sound to other words. Why they call it childhood apraxia of speech is confusing to me, as it’s not something a person will ‘grow out of’ or that only hangs around while you’re a child. This will go on to impact a person in their adult life as well. We don’t know at this stage how long he will be in speech therapy for.

My son is extremely social and affectionate – he loves to be around people. To know him, is to love him. He is confident, yet stubborn, and if he doesn’t want to do his homework he will let me know about it! Initially, this caused a lot of anxiety for me. It was an internal battle. I didn’t want to push him too much, but was I doing enough? How do I make this fun when it is such hard work for the both of us, while stressing out about what the future holds for him. I am happy to say I have since chilled out about the homework – in fact, about most things CAS to be honest! Hanging out with his 6-year-old sister day in and day out at the moment has done wonders for his speech!

In August last year his SLP did a formal assessment and diagnosed him with CAS at 2 and a half years of age. She told me not to google it!! Of course I did, and at our next session I had a million questions for her. It took a while to get our head around what this meant. What is CAS and how will it affect my son? How will it affect our family? When will he start to talk? As we researched, it became apparent why she had told me not to google it. I kept thinking maybe she’s got it wrong, but we’ve since had another 2 expert bodies give the same diagnosis.

It was around this time that I started taking my son to playgroup. However, we soon stopped going, as his interactions with other children would quickly turn to tears when he would just snatch things off them. He was not able to say anything at this point. He couldn’t even say ‘no’, ‘yes’, ‘ta’ or ‘please’’. While there, I found myself on edge most of the time. I was struggling to process the emotions and information overload and tears were often just under the surface.

Around September I asked his SLP if he would be able to say a sentence by the end of the year, and she said she was just hoping for some words. She was spot on. By the end of the year, at almost 3 years of age, our little boy was able to say some words. Some of which were yes, no, down, up, car, Nanna and ball.

I remember asking her this exact question – “But he will be able to speak though, right?” Her response was she didn’t know. Initially this hit me in the guts. What does she mean she doesn’t know? Surely it’s a matter of when, not if? Then, I started to see it from her perspective. Professionally, she can’t make such predictions. How could she? She didn’t have all the answers, but at the time, answers and solutions were what I was desperate for.

We now see a different SLP – a more conservative one – one who has diagnosed my son with ‘suspected’ CAS. ‘Suspected’ because we are unable to tick the last of the three boxes that characterise CAS at this stage – prosody. Prosody relates to stress, intonation and the general natural flow of speech. He doesn’t have enough fluent speech to properly assess this last feature. Although, if you ask him to use a bigger voice, as we often can’t hear what he’s saying because he speaks through clenched teeth and it sounds like he’s mumbling – he will yell the words at you!

One thing that I believe has helped my son considerably is signing. Our first SLP had us using Makaton, which is a British language support system. However, we now use Key Word Sign, which comes from Auslan. My son has picked it up easily and it has helped us out of a pickle when we can’t understand what he’s trying to say. I learn the signs and then use them in conversation with him and so he learns from me. He then uses them when he’s unable to verbally communicate what he wants to say. I used to speak Italian to him, but we have been advised to stop doing this, as it may confuse the sounds and take longer to make the sounds we’re teaching him in English. So, signing has substituted his Italian.

Just before his 3rd birthday in February this year, he was able to say ‘daddy’. This pretty much made my husband cry. After a while of therapy he’d learnt to say ‘bubba’ – but daddy…daddy was different. It was a special moment.

After just over a year of therapy, the progression he has made is tremendous and we are very proud of how far he has come. Just this week he has been able to say his abbreviated name, although he leaves off the first letter. He’s also just started saying his sister’s abbreviated name. He can now speak in sentences that consist of up to three to four words at a time. However, he’ll do things like say ‘happy’ and then out of nowhere it seems, when he says it again, he’ll say ‘hatty’. Also, now, when it all gets a bit too hard, he’ll say “I can’t remember” – in his own way of course. As his family, we can now understand what he says most of the time. However, a lot of that comes by playing detective and trying to put the pieces together.

The wonderful thing about our son is he wants to speak. He has a lot to say and he wants to be heard. He knows he’s not always understood, but he doesn’t let that stop him from trying and trying and then trying again and I hope that doesn’t change.

It has frustrated me when people have said – “Don’t worry, he’ll be fine, he’s just not ready to talk yet”, or “ Oh, so he can understand everything you say, he’s just lazy to speak”. I know these comments are coming from a good place. I know people are not intentionally trying to hurt when they say this. However, this is one of the reasons I am sharing our story – so people understand what CAS is and understand that it’s not about a person being lazy to speak. In fact, it’s the opposite. My son needs to work very hard to produce the sounds and words that he does. After a half-hour of intensive therapy, he’s asleep before I get down the street.

I have many hopes for our son. I hope he never ‘looses’ his voice now that he has finally started to make it be heard. I hope that he makes friends. I hope that his peers don’t tease him because he speaks differently to them. I hope he continues to be confident and believe in himself. I hope he never gives up; that he never fears making mistakes. I hope he continues to show such resilience and get on with life as he does now, and let nothing stand in his way. But most of all, I hope he is accepted for the magnificent person he is, and all the love and joy he radiates is recognised and embraced.

I look forward to the day when he can ask me why the sky is blue and argue with me over why he needs to clean up his room…not to mention the anticipation of hearing those three little words. However, for now – and always – I love and support my son, and I make sure he has every opportunity to excel. We encourage him and celebrate every little win, no matter how small.

Paula Marino

Dedicated and devoted mother of Vinnie

A few resources:

Fighting for my voice: my life with verbal apraxia – FB page

Apraxiakids.org – apraxiakids.org – https://www.apraxia-kids.org/

Casaustralia.org – http://www.casaustralia.org/

https://www.asha.org/policy/TR2007-00278