Athetoid CP and Speech Possabilities

williamsparents

Hi There, My son is just over 2 years old now and suffered a brain injury after a cardiac arrest at 14 months old, he now has Athetoid CP. After a rubbish outlook of never being able to walk, talk, use his hands sit up and so on within a year post injury he is doing fantastic, hes pulling to stand, sits unaided, full hand function and has made a remarkeable progress in a short space of time. His damage is to the basil ganglia, putaman and global palladus.

Can people tell me if they have known children with ACP speak or sign as at the minute hes doing neither, hes a very bright young baby and after a recent assesment with snowdrop (his therapy, non NHS) he knows about 30 words, he can follow simple commands like High 5, come to daddy, pass that toy your holding to daddy, splash splash, spin the toy bar.. he laughs at all the right times and his hearing is fine.. the sounds he makes are not words as such but each day he is getting more vocal.. any help would be appreciated

renacahill

Ask your SALT to do an oral assessment to make sure all the muscles in his mouth/jaw are working properly. We did this and Elliot was observed eating, chewing, blowing raspberries etc. He is 2.10 and also has basal ganglia damage from birth. This is the motor area and he has trouble co ordinating his movements. His understanding is perfect and he sometimes makes babbling type noises, says again for everything (its a very effective word!) and a few other words of similar sounds but speech seems to have stalled. One of the reasons is that our children have to concentrate so hard doing the physical stuff which just comes naturally to other children, they don't often concentrate on speech.

We were told encourage chewing different food textures, trying to blow bubbles, and a lot of emphasis on the individual words. Maketon is excellent, not just for non verbal children, but for every child as it places very precise emphasis on individual words.

Your william is doing so well, children whose brain injury occurs relatively later on than birth do so well because the normal pattern of movements have already been patterned into their brains. Elli struggles as his wiring is back to front, so he not only has to learn the 'right' way, he also has to unlearn the way his body wants to go!

kingboy25

Hi Williamsparents My adult son with Athetoid Cp has speech which most people understand as well as a big vocabulary! However the clarity does vary according to his energy levels. His first clear word that I can remember was at about the age of four years and wouldn't you know it was a word you wouldn't want your child to say. He was speaking in simple sentences by age six although it took an enormous amount of effort on both his part and his listener. I don't think this could have been achieved without the speech therapy he had three times a week. Looking back I think his speech advanced as his reading ability progressed. However I know four other adults with athetosis, two can only be understood by people close to them and two with clearer speech understandable by most people. These five people attended the same special school but the three with the clearest speech are closest to my son in age and also received the same high level of speech therapy input. The two with the poor speech are more than thirty years older and I have no idea if there was any speech therapy input in their day but I would guess not. So I suppose that what I am saying is the more speech therapy your son has the greater his chance of understandable speech.

williamsparents

Hi there, many thanks for your replies.. are you on facebook at all, we are on under the same name. would be good to talk further.

forgoodnesssake

HI, my son is now 13 and has athetoid CP. He always had mouth and facial muscle issues (we only realised when he was about 4 that he could not close his eyes "on command" they only close if he is actually asleep...!) and as such we realsied by about 1 that his speech may be affected.

At 15 months he had his first session at Bobath and their SLTs were great in that they clarfied to us what we had begun to suspect - basically that A was using body arching and such like as a means of communication...so we went straight on to some simple symbols and I taught him a few BSL signs (I had learned that a few years previously as it happens)

This really helped him develop his abitlity to communicate with us - cos he obviously understood at an age appropriate level but he needed a way to express himself to avoid frustration .....

A can be very noisy and "vocal" but it is almost all involuntary and he has no speech at all as he simply cannot articulate it. However, he has just finished year 8 in a mainstream high school having been in mainstream throughout - and is doing well using AAC (alternative and augmentative communication).
He had his first talking communication aid at 2.5 years and he also uses a symbol book and a spelling board. He still uses a few very personalsied signs but you have to know him well to know what they are; this is the down side of signing for kids with physical disabilities - it is often very/too hard for them to make the actual hand shapes.

For a good basic intro to AAC there is a really good new publication available here
http://www.thecommunicationtrust.org.uk/~/media/Communication Trust/Documents/Other Ways of Speaking FINAL.ashx

- Of course it is quite early days yet and your son may well go on to develop useable speech - I just wanted to reassure you that even with no speech kids can do and learn so much as long as they get the correct support and input from early enough. And just in case anyone tells you otherwise, there is absolutely no evidence at all that introducing AAC will hinder speech development! In fact there is a growing body of opinion that thinks it is actually quite the opposite.
Best wishes