Here are some suggested organisations that offer expert advice on special needs.
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Surgery for ASD child(4 Posts)
Our DS is due to have tonsils and adenoids removed in a few weeks due to sleep apnoea. He's nearly 4, developmentally delayed by a year, speech delay and ASD. Very sensitive to noise abs other sensory issues, and had to have 4 nurses to do blood tests recently.
We've been told a play therapy team will help us when he is admitted but does anyone have experience of hospital stay/procedure with a child who has difficulty communicating? We do some makaton so will practice that in the lead up.
I am petrified about when he wakes up and the pain. He will be so confused. I may need to be anaesthetised too
Just want to make it as smooth as possible for him. We think the surgery is the right thing to do as he does not get quality sleep which we think has huge impact on his behaviour during the day and will ultimately be impacting his brain development.
No direct experience of a hospital stay but the play therapist was really supportive when I had to take my ds in for blood tests. She spoke to me and ds before the procedure and helped to distract him and support me while the tests were happening.
There is a lady called Yvonne Newbold (yvonnenewbold.com) who writes a lot about taking her son in to hospital and the best way to deal with it. He was non verbal too.
my dd who has quite severe asd had a very minor surgery aged about 5. Things that made things easier were:
1. having her first on the list. This meant she was not having to wait to long without food or drink as she would not have understood why she couldn't eat / drink.
2. Going down to theatre with her and holding her while she was sedated.
3. My dd refused to have canula so this was all sorted once down in theatre I think. I remember them giving her a quick injection and her then going floppy very quickly. It was much less traumatic than them insisting on putting needle in her hand on ward.
4. When she came round she was confused and upset though she wasn't in pain which I would imagine your ds will be. I would maybe ensure there is a discussion about how they will relieve his pain prior to the op happening. Some hospitals now have a learning disability service who meet with parents and medical staff to work out a plan in advance of what adjustments can be made to make things easier.
We took drinks, ipads, dvds etc with us. I was dreading it but they were actually very good and worked with us to make it as easy as possible.
So helpful thank you! Especially about being first on the list. Our admission time is midday. Will get more info at pre op this week.