When Kyd was diagnosed with Down Syndrome at only 24hrs old, I was thrown in to a completely different world, one full of hospital appointments and health scares, statements and DLA forms. One which the ups and downs (no pun intended) would make myself, and Kyd, into the people we are today.
Kyd was diagnosed with glue ear quite early on which is good, but resulted in several (under playing the amount here) extra hospital appointments a year with both ENT doctors (ear, nose and throat specialists), Audiology (hearing specialists) and the appointment of his ‘teacher for the hearing impaired’ (education specialist visiting him at nursery and school regularly).
What is Glue Ear?
Glue ear is a build-up of liquid behind the ear drum that causes mild/severe hearing loss in children. It effects those vital sounds that help with speech development (resulting in Speech and Language Therapists) and is quite common in children with Down Syndrome. Glue Ear is one of those common issues in children and if left untreated will eventually fix itself although the result of doing so can lead to a severe speech impediment.
How do they treat it?
Treatment for this within most children would usually be grommets but for children with Down Syndrome these can do more harm than good. Due to their small ear canals and malleable tissue/muscle tone the grommets can often get stuck in the ear canal and can even result in further surgery. For children with DS the treatment for Glue Ear is usually the
use of hearing aids on the effected ear(s) until the glue ear corrects itself, this can take anything from 1 – 10+ years, it really just goes at its own pace.
Kyd’s Audiology/ENT story…
Kyd started wearing his hearing aids just before he was 3 years old. He started with two hearing aids and then eventually his hearing in his right ear was at normal levels and so he was down to one. He attended the Audiology department for his hearing tests, ear moulding (the bit that sits in the ear), fittings and emergency fixing. This meant an appointment at least once or twice a month at its worst and then ending in once every 6 months, with a few phone calls for replacements towards the end… As you can see, it wasn’t an easy task having hearing aids to say the least and even worse because he has fought us every step of the way.
He hated wearing them. He would scream at me when I tried to put them in. Hold his hands over his ears so tightly I’d have to fight him then pin him down to get them in… not nice at 8.30am every morning. He never kept them in after all that trouble any way, he’d take them out on the way to school and ‘lose’ them.
He had a habit of ‘LOSING’ them, i.e. hiding them in strange places so he didn’t have to wear them. When I say hiding, I mean he was like the champion of hide and seek type hiding and not always ALL of the aid, sometimes it was just the important parts of it, like the moulds or the actual aid, which was equally frustrating. To date we have found them in toilets, shoes, vases, cups, fish bowls, cats bowls, flower pots, street corners, drains (never recovered obviously), playing fields, parks, wardrobes, draws, toy boxes, sand pits, paddling pools, puddles, the dishwasher, washing machine AND the tumble dryer… I could go on, they are just a fraction of the hidey holes he has used over the years, I just wrote them up as they came back to me, I must admit I laughed a bit each time I found one and the more creative the hidey hole the more proud I was about his ability to think up new places each time.
We got clever though and we became one step ahead so he always had a spare pair waiting for us to spring on him when he performed his magic disappearing tricks… It was short lived, he just got slightly more devious and started hiding those too, leaving us with no hearing aids at all and constant emergency appointments. So we got cleverer and kept a pair at school too, where they would put them in and take them out each day, so that he had less chance of throwing them away and they served their purpose. This was an effective method and we only lost those ones a few times. Success… ish!
They do make it very child friendly though, he had a picture of Jake from the Tweenies in his first teeny tiny pair, then we progressed to England flags throughout the World Cups and Euros and, most importantly and most regularly, his beloved Reading FC badges too, so throughout the years he’s really drummed up his own style in hearing aids. You see they have this little book of things you can have put in them, they range from TV characters to Footy and Rugby teams across the leagues and you can even have sparkly pink ones if you want… Kyd wasn’t that keen on that idea though so he stuck with plain black for a while.
Hearing aids are great, they do what they say on the tin but they come with their own issues, other than trying to keep them in their ears, they can also cause really annoying whistling and also a huge build-up of ear wax, which in turn causes more whistling. This is where ENT comes in.
We saw the ENT doctor every 3 months, then 6 months, for 8 years.
Kyd’s ear canals are teeny tiny compared to ours and even a normal amount of ear wax can create an issue for his hearing, this is a common issue in children with Down Syndrome. Hearing Aids create a suction in which causes ear wax to become more prominent within the canal (I can’t tell you the science behind it all because it is too complicated, you can google that yourselves) and this can cause the waves from the aids to not reach the drum correctly, causing the whistling.
His ENT doctor started at age 2.5/3 by giving him ear drops to melt the wax, he hated it and we struggled to get it into his ear.
He then told us that warm olive oil did the same thing and it may be easier to put in as we could just drip it off a spoon… absolutely no difference, he hated it.
He then tried the hoover when he was about 5yrs old… nope, not the Dyson in the cupboard, but the teeny tiny suction stick that sucked the wax out, the doctor got a nice punch in the face by Kyd for that one.
He then, soon after, decided that maybe just a pointy mental stick (technical name for it) would work AND… it did *hurrah*… what came out of it though… *puke* I can honestly say that I have no idea how that much wax could come out of something so small.
We used the scraper method for years but as he grew older we returned back to each method and he did end up loving the hoover, giggled away each time, which again took out silly amounts of wax. We even tried Hopi Ear candles when he was big enough to lay still for long enough and that seemed to reduce the whistling and take out a small amount at a time in between appointments.
Teacher for the hearing impaired
Between all this he saw Helen. Helen was a teacher for the hearing impaired who came into his nursery and school termly to check his hearing aids and do some work with him to map out his progress. Helen was with Kyd throughout his Glue Ear journey and she was a huge part of his life. She travelled with him from Nursery to his first, second and then third, mainstream school. She saw him grow up, she watched his progress go from not doing or saying much at all to being able to do his times tables, write sentences and sign and speak actual sentences to her, enough for her to have a full conversation with him. She was a lovely part of this journey and her help with all the above has been priceless. She helped me through all of his Special Educational Needs Statements and with his Disability Living Allowance forms too. I miss her already. Even though we saw her less as his hearing got better, she was still a joy to be around and always put a positive spin on every situation. Her job was to monitor and plan Kyd’s education throughout using his hearing aids and fix them when she could too, she did so much more than that and I am truly grateful to her. *I’m getting all emotional now so I’ll shut up*
This week Kyd was discharged from ENT, soon to be discharged from Audiology too. His hearing test came back with ‘perfect’ levels in both ears and his wax was at a minimal. He has reached the age in which glue ear fades and behind all that horrid glue was perfect hearing all along.
We have noticed a huge change in Kyd’s speech in the past few months and this is a direct result of his hearing now being clear. We have a long way to go before other people can understand him better but we are on the right path now as we close the door on that chapter we open another in the task of getting his speech up to scratch.
We have had a long and winding journey with Mr Glue Ear and these blasted hearing aids and I guess grommets would have been easier and quicker but for Kyd they just weren’t right, for Kyd, they would have been much, much, worse.
This week was a milestone in Kyd’s life.
A milestone that we can look back on and think, in Kyd’s words…
‘HA, in your face Glue Ear, we beat you, now nothing can stop the mighty Kyd from being the best he can be, nothing at all’
OK he didn’t say that but I know that is what he was thinking, he’s a walking comic book at the moment!
Goodbye Mr Glue Ear,
it's been not so nice knowing you.