This May Cleft Friends is celebrating 10 Years! Whoop! Whoop! If you or your loved one is cleft affected feel free to email your photo and story to us at info@cleftfriends.co.za. We want to share encouraging stories and create awareness about cleft lip and palate in South Africa. You are not alone!
This post is dedicated to Joel Brave Cullis who turned 10 years old yesterday 14 May 2019. A boy who has a strong will, determination and who is going to go far in life. He is our champion. He is in Grade 4 and is writing his first exams this term. It feels like we are writing Grade 4 exams too with all the revision and studying we are doing at the moment. Joel made the U/11 A Rugby team at his school this year, something that impacted his life greatly. He was overcome that kids had said he wouldn’t even make the C or D teams and that he didn’t belong in the A team. Every time he came home and said he was still in the running for the A team and his name was called out, hope started to rise in his heart. The day he came home and said he had made the team it took him a full day to comprehend what that meant and that he was good enough. When Joel puts his mind to something he does it with all his might. On the rugby field we can see when his head is in the game or not and when it is in the game he shines.
To a large degree we thought Joel wouldn’t battle with being bullied or teased as he was born with a cleft palate and not a cleft lip and doesn’t have a scar on his face. However he does sound nasal and when he has a cold he sounds extra nasal. Kids can be very direct and often ask him why he sounds “weird”. We have this discussion on an ongoing basis that the kids who say the word “weird” are misinformed that he sounds nasal not weird. We encourage him that kids are teased everyday about all sorts of things some have freckles, others have ears that are bigger or hair that is too red etc. From a parenting perspective it is hard to back off and allow him to fight is own battles but we know that empowering him to cope with bullying is better than fighting his battles for him; He will walk away with a better feeling of success because he did it on his own. We have on occasion contacted his teachers to discuss certain incidents when Joel has asked us to. He is in an amazing school that has zero tolerance for bullying and he knows he has teachers who are there to look out for anyone who may feel isolated or bullied. We feel that this is his story to tell one day and so can only guide and love him from where we stand. We are told that kids affected by clefts often feel like they have a permanent cold, we can relate to this as Joel is old enough to communicate what he is experiencing and how he feels.
He is due to see the ENT for a check-up and we are sure this will clear up the gunk in is nasal passages and alert us of any concerns. To date he has had 5 sets of grommets. I emailed Speech Therapist Georgia Jammine re his nasality and she wrote back saying the following (I’ve included this as sharing is caring and maybe this will help another family affected by clefts):
“The most common reason for nasal speech in a child with cleft palate is velopharyngeal insufficiency i.e. a soft palate that is too short to reach the back wall of the throat, in order to close off the nose from the mouth during the production of pressure consonants (p, b, t, d, k, g, s, z, sh, zh, f, v, th). The best way to check the length of the soft palate and its function during speech is by means of a video x-ray (videofluoroscopy) or by endoscopy. If the palate is indeed short, then obviously Speech Therapy cannot make it longer. That would require surgery. Only if the nasality is inconsistent, i.e. if the soft palate manages to reach sometimes, although not always, and Speech Therapy help to make the child aware of what he is doing on the ‘good’ sounds, so that he can do the same on the other sounds.”
Georgia has specialized in cleft lip and palate and welcomes questions should you want to bounce something off her re your child’s cleft experience and speech: georgia@jammine.com
Once he has had his ENT check-up we will revisit our local Speech Therapist and Plastic Surgeon to follow up on Joel’s nasality. The best advice we were given re clefts was that it is a journey. Up until now we as his parents have been steering the ship re his check-ups with the cleft team and it is refreshing to have his voice in the conversation. Joel asked us the other day how he can stop sounding nasal and he wants to go for the check-ups. It’s a whole new experience having his voice in the picture re his cleft care. We are grateful we have taught him to ask questions.
Looking back over the past ten years it’s hard to find the right words to fully describe the gratitude we have experienced on our cleft journey as a family. We never planned to get on this journey however this journey happened and we continue to overcome and make the best of the ride. In the beginning we wanted to focus on our own journey and move on with life and we are so glad we didn’t. We are glad we dug deep and reached out and wanted other families to know they are not alone. We have written our story so many times and feel it is best said in the parent guide on the Cleft Friends website on pages 6 and 7 you are most welcome to read it here: https://cleftfriends.wpengine.com/cleft-lip-palate-parent-guide/
Closing the gap!
Heléna & Matthew
xxx
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