Speechless Girl

[Vetttie]

Hi my name is Louise, please anyone out there, who can help my daughter. She is 10 years old, no speech, still on nappies. Can't get her into a school, did many tests, still don't know what's wrong with her. Please 🙏 anyone help us, her, I begged and go on my knees. Louise

[Jofisher]

Speak to your G.P. Ask for a second opinion at Great Ormond street hospital or a children’s big specialist hospital near where you live. Speak to children’s social services explain the issues your having they will help you. Great deal I’m sure. Also contact Carers U.K. association explain what’s going on for your family and that you need a carers assessment as your on your knees and struggling to cope. They will all help you good luck and don’t forget the me cap helpline as well.

[Sarah_Mencap]

Hello Vetttie

What a lovely photo.

Thank you for posting on here. It can feel very hard to know where to start but you are not alone. There are other families on here who have been in your shoes.

Here are 3 places to find support:

> Call (or email) our helpline on 0808 808 1111 or email [e-mail] and talk to one of our advisors.

> Contact your local council (if you live in the UK). They will have a local offer that will say more about the support you can get.

Here is a bit more about the sort of support you should get - gov.uk/children-with-specia...

You can find you local council here - gov.uk/find-local-council

> Your GP (doctor) will be able to help with getting a diagnosis and support. It is really important that you tell them what is going on. Here is some more information about this -mencap.org.uk/advice-and-su...

If you don't live in the UK it will be worth trying to find support from organisations like Mencap nearer to where you live.

I hope this helps a little.

Thanks

Sarah

[Vetttie in reply to Sarah_Mencap]

Tks so much, I am from South Africa, have no medical aid. So its very difficult to get the best help. Regards Louise

[LDAutie]

hi Vetttie i am non verbal myself (classic autistic with mild intellectual disability) and still in pads/nappies at 37,my mum was exactly like you when i was your daughters age as she had no support.

things are a lot more different now for disabled people and parents-there are a lot more ways at helping people with additional needs, communication impairments (i use an ipad and app called proloquo2go to communicate with others for example) etc.i wish things were more straight forward for you in south africa,perhaps you coud be the one to start it-a local support/social group for parents/carers of special/adittional needs children?

stick around this forum,if nothing else you will find friends!

-there is a lady who comes on here who often helps out parents with additional (special) needs children who are still in pads.

for some of us though its just part of life like having a pair of glasses is,i know in my case and a lot of other people with complex autism i have no feeling in my bladder/bowel or trigger telling me i need to use the toilet.

ive got an idea,i live in a care facility in the UK but many of my support staff are from different parts of africa, and all have worked within autism/intellectual disability care in africa, ii will see over the next couple of days if anyone knows of where to start for you,one of my staff for example is an ex special school teacher in africa but she is very clued up,ill see what i can find out.

one other thing im wondering if i can help you out- i have a widgit online subscription, do you want me to give you pages of basic special images, used for communicating with?

i can also make now and next routines (for your daughter to know what is happening now and next- so it might have a picture of 'lunch' on now, and 'play' next for example? i can make schedules,easy read etc,anything that can help.

ive been a disabled activist for many years so i love to help out when i can.

[Vetttie in reply to LDAutie]

Thank you so much for your responds, I am so clueless, don't know where to start. I will like you must stay in contact with me. Regards Louise

[Vetttie in reply to Vetttie]

Yes and please help me, because I am on a point that I feel that's better to take our lives 😭

[LDAutie in reply to Vetttie]

hi Louise! my name is Emlyn!

if you have a colour printer to hand and a cheap laminator this will really be helpful for what im about to say.

if you think up a list of pictures your daughter might want to use in her day, foods and drinks, hobbies, maybe if something is to noisy, or she is bored, if she feels bad or good,or she wants to play with something-give me the list and ill turn them into widgit pictorials for you.

you can start off using just a couple of pictures with her and work in more as she starts attaching the action or object to the piece of paper.so for example, with a picture of an apple, you woud hand her an apple with it, and she will over time ask for an apple (or whatever example in place of apple) with the card.

i can also make for you if it helps,an easy read on how to go to the toilet/clear up after and leave-, she might possibly struggle with the amount of steps needed to be able to go to the toilet,and easy reads that break down each step are helpful to have stuck up on the wall in bathrooms although it may take a lot of support for a while,theres no telling at the moment as she doesnt have a communication system available.

if your daughter is good with tablets (android based), and you had the spare money, i know there is a good alternative to the app i use, called coughdrop, you click on the picture and it talks for you.

you can do it with help by using other peoples templates-or your own, edit it to her needs and wants,however it isnt cheap i think it costs in english pounds £150,its much cheaper than buying an ipad and proloquo2go though,and it is a full communication system in your hands.

over here you woud get physical support with that from a speech and language therapist who woud make sure it was the most suitable for your daughter first,then probably set it up for you,my speech and language therapist let me set mine up as i like doing things on computers.

if you ever get around to the idea,i can also help you with starting up a meet up/support group if you woud like, i can design logos and flyers,i have experience of starting up a local group for parents,carers and people with any level of autism and/or LD,but i was bullied out of it.

ill get onto it more tomorrow as i am going to see my special needs dentist in the morning , so ive been in high anxiety since i got back tonight from my dads. see you tomorrow, bye!

[Vetttie in reply to LDAutie]

Hi Emlyn, you sound so nice, can't believe we still get people like that. My little girl is hooked on her cellphone and will walk around with it all day long and listen to U type music all the children music, sometimes our music, lol. I did try many other things that she must do, but no interest. She will jump on the trampoline for a while or when its summer she likes to swim. She sat on the potty, maby one out of the 10times she will pee. She don't go on her own. I will like if you can send me the coughdrop app, so I can see if I can afford it and how it works, if it is possible. Thank you so much for your time and thinking off us. May God bless you and have a wonderful lovely day. Louise 🥰

[Vetttie in reply to LDAutie]

Hi Emlyn, I again, can you also do that read on thing for the potty train. Thank you so much, you are a Angel 👼 Louise

[Vetttie in reply to LDAutie]

Hi Emlyn, hope you doing ok. Don't hear anything from you. Louise

[Kieran_Mencap]

Thank you for contacting us. There has been some great information shared already. If you are based in the UK, you could also try contacting:

contact.org.uk – Family support

sossen.org.uk – SEN and children in education

ipsea.org.uk – SEN and children in education

You could also do a Google search using “SENDIASS (enter local area) local office” this will give your local office details as well as any information, advice and support available in your area.

I hope this information helps.

Kind Regards

Kieran

[Vetttie in reply to Kieran_Mencap]

Hi Kieran we are living in South Africa. Louise

[Jfmj]

Hi Vettie, don’t despair there is lots of help out there on line. If you can get a diagnosis (sounds like she has a syndrome-so need geneticist) that will help as there are lots of support groups. My daughter per is 21, non verbal, semi incontinent, she has RTS and loves music, children’s TV - You tube clips, swimming, riding and trampoline but most important routine and knowing what she is doing and when (use pecs/symbols and photos), regular/routine toilet visits and maybe a lanyard with toilet symbol so she can tell you…Start with just a few key communication aids and once she’s got the hang of it you can develop. We use Proloque 2 go now which is great way for her to tell us what she wants etc but expensive…good luck Jane

[Vetttie in reply to Jfmj]

Hi we had her tested for many things, but nothing, that was at a state hospital. We don't have medical aid, so is difficult for us to take her too good doctors. Anyway tks very much Jane for your input, everything helps. Louise