Charlie at his soggiest! (aged 5)
Speech isn't something you would immediately think of maybe. But a significant number of children with hypotonia will also have speech difficulties. Sometimes it is a 'pure hypotonia issue..actual speech sounds are delayed due to a floppy tone in the muscles that form sounds . Sometimes there are speech delays that stem from coginitve delays, sometimes, like Charlie, it is both.
Charlie's speech issues were from birth. He couldn't latch on to breast feed. Even his cry was weak. And he drooled. Oh my did he drool. It literally poured from his mouth, which hung open at all times... and so at 22 months we had our first visit from the Speech Therapist, who suggested oromotor activities to try and improve Charlie's lip closure, and also suggested..as he had no words whatsoever, that we start to sign with him.
Over the next few years sign was Charlie's main form of communication. He tried to talk, but both his learning difficulties and his hypotonia slowed him down. He also had 'Glue ear' which made him deaf..sorted after two sets of ear tubes (grommets).
Aged 10, open mouthed and tired.. typical look.
At three he had a few word approximations , but no clear words. As he started school he still had just a few words. He was trying so hard to make hiself understood but the quality of his speech was VERY poor. He was seen by the cleft palate team who concluded he had, literally, a floppy palate and velonsal insufficiency. He speech had..and still has an extremely hypernasal sound to it. We were also offered an operation to reposition his salivery glands in order to control his profuse drooling, but we declined as the op was horrible and we hoped that he would eventually be able to control it himself. This infact was the case.. as Charlie acquired speech, so his drooling improved. To this day he has to be reminded to wipe his mouth as he drools a little when tired, but it is NOTHING compared to the fountains he used to produce. Charlie wore a bandana to collect the drool until he was 6 and then gradually it faded away.
The quality of Charlie's speech has always been affected. He had very unclear speech until he was 6 or 7 but gradually it has improved. He still struggles with certain speech sounds..mainly ss,sh type and while family and teachers and those who know him well understand him, those less familiar can struggle. When tired or anxious his speech can be very slurred indeed and even I struggle to understand him. Luckily Charlie rarely notices! He does not routinely drool now but still dribbles a bit when he's tired, but will wipe it when reminded.He remains hypernasal and also has a very open mouthed posture unless he is told to close it!
An example of his speech is below in a clip of Charlie aged 8 singing his favourite song... His speech has improved quite a bit since then..
Charlie 18m later...much clearer!
Charlie continues under the eye of the Speech Therapist, though probably there is little we can do now about his speech sounds, we are focussing more on his comprehension and social use of language.
However enough of the serious stuff. I wrote these web pages to be both a record of our journey so far with Charlie but also to serve as a boost for those starting this journey.. it's not all bad. Charlie has brought more joy to our lives that I can begin to describe. It hasn't always been easy..and I don't foresee that it ever will be..adulthood looms and Charlie is unlikely to be independent so we have no idea what the future holds. BUT.. he is in a family who love him so much, he is a wonderful young man... come meet him more, though photos, and meet his brother , sisters and Dad who are his built in team of therapists (along with me of course)...