Can you imagine what it must be like living in a world that expects everyone to be able to communicate verbally and yet you are not able to? How do you think people would look at you, treat you, if they spoke to you and you did not reply, or look at them? This is what my son Sam faces everyday.
We knew something was not right with Sam's speech very early on, but finding a doctor to listen and not just say 'it will be OK, some children do talk later" was surprisingly difficult. He had a period of about twelve months where he constantly had ear infections. It was not until he was almost two and a half years old that we were referred to a Paediatric ENT. Sam was diagnosed with Glue Ear and was scheduled for a procedure to insert grommets in both ears. We read up on glue ear and realised that poor Sam would have been living most of the previous twelve months in an auditory fog. That was obviously the cause of his speech delay. He can't say what he can't hear, right? Steve and I were confident that once the grommets were in place and Sam's hearing returned to normal, we would see (or rather hear), an improvement. Unfortunately, this was not the case.
During our time with Sam's ENT we also learnt that Sam had particularly large tonsils and adenoids. This could explain the mouth breathing and snoring. Sam could be measured on the Richter scale with his snoring. I really could not believe that sound came out of such a small body! I also voiced my concerns about Sam appearing to stop breathing when he was asleep. Possibly sleep apnoea? The ENT recommended removing them, but it would be best to wait until he was a little older. The grommets would be painless, but taking out tonsils and adenoids were very different. When Sam was three, he went into hospital for the procedure. It is so hard to watch your child go under an anaesthetic and I know parents of 22Q kids that have to go through this so many times I really don't know how they handle it. Another procedure down. No more snoring and the mouth breathing improved significantly, but still no talking.
It was not until we changed Sam's GP, that we finally found a person who really saw us and listened. She is the person I credit with changing our lives and sending us on the path we needed to be on (and I have told her this.) She is still Sam's GP today. Our journey with Sam over the last few years has been complex and continues to be so.
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| Sam in hospital after the procedure. |
Sam is now six years old and we are still going to speech therapy every week. I did cut it back to fortnightly when he started school, but now that I am homeschooling him, I have gone back to our weekly visits with Maree. She is a lovely person with a very gentle way. Sam likes her, even though he gives her a hard time every now and then. One thing I've learnt in my time dealings with doctors, therapists and teachers, is that it is essential for Sam to connect and bond with them. If that connection is not there, I will look elsewhere. The people on 'Team Sammy' will shape his future. That is a big responsibility. Sam's speech has improved so much and he can be very verbal, believe me, but it is not as it should be for his age. When he did not speak, the thing I wanted most to hear was "I love you Mummy". What Mum wouldn't? Now I do get to hear him say that...when prompted. I know that he feels it though. He tells me with his hugs and with his kisses. Talking can be highly overrated you know.
Some time ago, I read a Facebook post that linked to an interview with the father of a child with Autism. Watching that video completely changed my perspective of how Sam communicates. People with 22Q, like Autism, can have difficulty connecting verbally and struggle with looking at people's faces. This does not mean that they do not hear. Carly Fleischmann has severe Autism and is not able to speak, but as her parents discovered almost by chance, that did not mean she did not have a voice. It is people like Carly and her family that inspire me. Sam has a voice, you just have to learn how to listen.
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