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Hello to one and all.
We are having problems with our 8 year old girl and they seem to have become more apparent now her little brother came along almost 4 months ago. She is disabled (had to have a tracheostomy when she was 3 days old, due to her vocal folds being paralysed, and still has the tube today) and needs 24/7 care and has to be supervised to make sure she doesn't get into and trouble with her breathing. It can be hard sometimes when she has a cold as we don't seem to get any sleep as we are going in and out of her room. She knows no different and to her it's normal. We have tried twice now to see if she can breath and cope with out the trache tube but both times it didn't work. The first time we came close to losing her as her windpipe (trachea) collapsed and they had to fight for 2 hours to get her tube back in place. Once they got it in she sat up, coughed then asked to go back to her room.
I only came into her life from when she was 3. My wife struggled with everything on her own before that as her then partner and father to her daughter was and still is a waste of space. He is very self centered and money and gadgets are whats important to him.
Anyway, the problems we seem to be having have just become more apparent since we have had our little boy but I think thats just as we are taking more notice of how she is behaving as she has always done the things she does. Some of them seem to be getting worse and we have now had to seek more medical advice and are waiting for yet more appointments to come through. She seems to have autistic tendencies. She walks on tip toes a lot. She always has to have lots of something and really gets herself worked up beyond belief if she hasn't. For example, she made cakes with her mum and will not eat any as then she will no longer have 10 left and demands we make more. She will not eat anything if its the last one and demands that we buy more. She has to have her drink full up and kicks off it isn't.
We are also having trouble with her toileting and she seems to have accidents just about everyday and is more than happy to sit in it till she has finished playing or doing whatever she is doing. There is a boy st her school who is autistic and we have noticed she acts and behaves more like him than the other kids at school. She does have a lot of friends at school but she doesn't seem to play with them as as much as she used to.
We are just struggling to understand whats going on with and just need help and advice in how to deal and be with her. Once we know what is going on then we can be more understanding in how we are with her.
Hi Lumptylee
Thanks for your post. Sounds like a tough position to be in. I know Mr Orange who comes here quite a might have some advice. Have you tried calling Contact a Family for advice? Their details are on the DadTalk directory of service They support families who have disabled children and have a free helpline number.
They wrote an article for us here on DadTalk which you can read here
Hope some of this helps mate and have a great Christmas buddy
I just might pop over to their site and have a look. I think I may have had a look at other stuff on there before. At the moment we have had to fill out a question-air for the CAMHS (Child and Adolescent Mental Health Services) then we will just have to wait to hear back from them.
Just an observation be mindful of the issue of CAMHS which may be too extreme under the current circumstances
There seems to be some significant turning points which perhaps as parents you did not see it coming and was gradual in nature rather than acute
I hate to say this but there may still be some learned negative behavior that she may exhibit along the way.
So the tough call is staying together as a family and setting structures, which I can tell is easier said than done
Now that the tough bit has been highlighted are you ready for this long haul ?
I will say d'ont quit no matter what because the reward is more than you can ever imagine.
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