16 yr old has severe quadriplegic cerebral palsy - behaviour help and activities?

BevyB

Just like to say hi to everyone my name is Bev and my husband is called Steve we are in our early 50's and we are full time carers for my son who is 16 yrs old, who has severe quadriplegic cerebral palsy with athetoid involuntary movement's, very little communication yet seems to understand to a point.
Obviously wheelchair bound ......and so on the biggest problem for us is his behaviour can be quite challenging and frustrating and not knowing where to turn and what activities if any to try and give him some quality of life and to take his mind off his frustrations. We live in Stockport and resources seem to be getting less and less.

steve51

Hi @BevyB

A very very big welcome to you to our website and online community 

You have come to the right place for help and support.

I have attached some info for you below but if you require some more please let me know ???

https://www.scope.org.uk/support/families/diagnosis/cerebral-palsy

sheilabelcher

Hi Beverly,  myou son turns 20 soon and we have the same. If he does something naughty no amount of lectures, threats, etc will stop him. I have come to accept that he just doesn't not understand/have the social conscience to tow the line. So we just try our best to avoid whatever sets him off. Example - don't dare take his things without asking, can send him into a tantrum. I think that part of him (and maybe your angel?) Will always stay at that toddler stage of me and only me? Strings to you both and always try to find a funny side it helps a lot!

Blue Frog

Hi Bev, welcome to the community.  I don't know a lot about behavior but here is some info on activities... 

Stockport CP Society are very good and might be able to give you some advice.  

They run cycling sessions at Woodbank Park 1-3pm on a Saturday, with special bikes for wheelchair users and a cafe.  This is for kids and adults and there are lots of young lads there.  

Jump Space, the trampolining place near the bus station is also good, they have hoists and the staff are all rebound therapy trained.  There are drop in sessions at half term

Lots of other info here https://stockport.fsd.org.uk/kb5/stockport/fsd/localoffer.page

xxx

forgoodnesssake

HI, you have said your son has very little communication but understands to a point.  Does he have any means of communicating?  If he cannot speak clearly (or at all) has he (and you) been given any sort of Speech, language and communication support in the way of maybe learning to use some signing (if he can) or symbols, or alphabet charts if he can read or spell?  I ask because if he understands but cannot communicate well or clearly, this will be really frustrating for him and can of course come out in challenging behaviour.  There is some useful info to be found here www.communicationmatters.org.uk or www.1voice.info.    Jenny (mum of 19 year old non-verbal, wheelchair using athetoid CP son who uses AAC (alternative and augmentative communication)

BevyB

sheilabelcher said:

Hi Beverly,  myou son turns 20 soon and we have the same. If he does something naughty no amount of lectures, threats, etc will stop him. I have come to accept that he just doesn't not understand/have the social conscience to tow the line. So we just try our best to avoid whatever sets him off. Example - don't dare take his things without asking, can send him into a tantrum. I think that part of him (and maybe your angel?) Will always stay at that toddler stage of me and only me? Strings to you both and always try to find a funny side it helps a lot!

Thanks for your help it helps to hear other people's ideas and to know we not alone x x

BevyB

forgoodnesssake said:

HI, you have said your son has very little communication but understands to a point.  Does he have any means of communicating?  If he cannot speak clearly (or at all) has he (and you) been given any sort of Speech, language and communication support in the way of maybe learning to use some signing (if he can) or symbols, or alphabet charts if he can read or spell?  I ask because if he understands but cannot communicate well or clearly, this will be really frustrating for him and can of course come out in challenging behaviour.  There is some useful info to be found here www.communicationmatters.org.uk or www.1voice.info.    Jenny (mum of 19 year old non-verbal, wheelchair using athetoid CP son who uses AAC (alternative and augmentative communication)

Thanks for your understanding and help good to know we not alone x x

BevyB

forgoodnesssake said:

HI, you have said your son has very little communication but understands to a point.  Does he have any means of communicating?  If he cannot speak clearly (or at all) has he (and you) been given any sort of Speech, language and communication support in the way of maybe learning to use some signing (if he can) or symbols, or alphabet charts if he can read or spell?  I ask because if he understands but cannot communicate well or clearly, this will be really frustrating for him and can of course come out in challenging behaviour.  There is some useful info to be found here www.communicationmatters.org.uk or www.1voice.info.    Jenny (mum of 19 year old non-verbal, wheelchair using athetoid CP son who uses AAC (alternative and augmentative communication)

Thanks so much just to know we not alone helps x x x

BevyB

forgoodnesssake said:

HI, you have said your son has very little communication but understands to a point.  Does he have any means of communicating?  If he cannot speak clearly (or at all) has he (and you) been given any sort of Speech, language and communication support in the way of maybe learning to use some signing (if he can) or symbols, or alphabet charts if he can read or spell?  I ask because if he understands but cannot communicate well or clearly, this will be really frustrating for him and can of course come out in challenging behaviour.  There is some useful info to be found here www.communicationmatters.org.uk or www.1voice.info.    Jenny (mum of 19 year old non-verbal, wheelchair using athetoid CP son who uses AAC (alternative and augmentative communication)

Thanks for your message. My son has a communication aid as well but it is so complicated to get round it. There is no proper training for it we were told to take it home and play with it which was quite scary. We are making progress with it and my son loves it. I asked his speech and language therapist about training and she told us there is not one single person in the whole northwest that has been trained up on these machines I find this really frustrating. They send the things home with you to well get on with it and good luck. So something else to learn and take up yet more time that is becoming more and more prescious as time goes on x x 

forgoodnesssake

Hi, i am so sorry that you are having this problem with the communication aid; it is totally unnaccepatable to be fobbed off in this way and I know how daunting some of this technology can be.  I am really angry actually on your and your son;s behalf...why would any SLT issue anyone with a communication aid that no-one knows how to use and just expect you to do it on your own!!  Can I ask what the machine is because I actually seriously doubt that no-one in the NW is trained on it!  I live in the NW and also am a trustee of Communication Matters so i would really like to help you if I can...it is definitely worth looking at those 2 web sites and even trying to get along to a 1 Voice event if there is anything near you; they are very informal and personally meeting other families with a child who used AAC was the single best thing we probably did and helped make my son who he is today.  best wishes, jenny

forgoodnesssake

Hi again...I just found this even on the 1 voice web page http://www.1voice.info/warrington-pop-event.  It is in Warrington, which is not too far, if you area able to travel.

BevyB

Hello again and Thank you again for your kind reply. My son has the tobii dynavox i-12+ and uses compass software with pod 60 which is a mouthful to say the least. He loves it and it is a fantastic piece of equipment especially the eye tracking and with the correct knowledge in sure it would open up his horizons in a big way. Before that he had an old dynavox machine where he had to scan everything it was very long winded and he got very bored with it and then I tried to programme some of the buttons on it and ended up wiping the whole thing which nearly made me have a nervous breakdown so I was frightened to touch the machine ever again. It's the same with this one I will admit I'm still very nervous around it. We are slowing picking things up but there is so much more to it especially the vocabulary set out and finding the words. Sorry waffle over x

forgoodnesssake

Not waffling at all...I don't know where to start really and so I will have to be careful not to slander a SALT that I do not know, but it is simply completely untrue that no-one in the NW has training on the i-12+ !!  My son has one for a start (different software package, but there is training on both the actual machine and whatever software and vocabulary package a person uses. )  and I know many other people who have,, and know that lots of training has been done. 

My son has his device from ACE in Oldham, and they definitely know quite a lot about that communication aid and different software so if you have not had any dealings with them before (they are the regional specialist AAC centre) you should ask to be referred, or contact them yourself, https://acecentre.org.uk/ and at the least they will be able to point you at some training.  Apart from anything else the company Tobii Dynavox will come out and do some training for you (free) They did for us and they even came to our house.  Your story really concerns me and unfortunately it is one we hear all too often.  It is just such a pity that Scope now do virtually nothing about communication ...they have in the past run one or two very good campaigns about AAC, but not any more...  Jenny

BevyB

Hi Jenny it was ACE where we got ours from also we are supposed to have training with them but it was them who said to take it home and play with it. Our salt lady is lovely she said she has tried phoning then but still not getting very far as she only works part time and do do the rest of salt team that are at my son's school. As for the dynavox rep he didn't seem to understand the machine very well he says he will come round and see us and then doesn't then you can't get in touch with him so it's time all being wasted yet again. Bev x

forgoodnesssake

I am sorry you are struggling.  I have to be honest and say that your description of the service you have had from ACE bears no resemblance to our own, or anything I know about them.  I wish your son well with his AAC journey and hope you find the support that you need.

jue123

It costs £3000 for an accessment according to the ACE website. Which seems a bit steep. You can buy the equipment but it is £999.00. Are there other ways?

forgoodnesssake

An ACE assessment is free if you are referred by your local AAC speech therapist, as is any equipment they may assess is needed.  They are funded from the NHS as a specialist regional provider.  However they are only funded to provide for those with complex needs/disability and so even if the equipment is complex or expensive but the person does not have complex access needs then the local NHS SLT service (or via an EHCP) should be assessing and meeting need.  However we know that local services are very patchy.  Eye Gaze technology is a lot more than £999 unfortunately.

jue123

Thanks for your informed reply. I think I will contact SLT at Beaumont College where my son attends and see if they have it.

forgoodnesssake

Yes Beaumont should know about the process.  Good luck!

BevyB

Thanks everyone it seems that the funding for the machines, training etc all depend on the area where we live and funding available in that area. 
We are now in the process of looking further into this as I think they are now getting fed up of us getting on at them. It's just taking a while as all these things normally do and there is a new salt lady started at my sons school who is also more clued up about these machines a.nd training. Thanks everyone.