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SN undiagnosed genetic conditions

This forum is for Mumsnetters to discuss undiagnosed illness.

Any advice or similar stories.

3 replies

CAdderley · 05/05/2017 21:13

My son has recently turned 4. I have noticed certain things with his behaviour that causes some difficulty with day to day life.

  • Ever since he was a baby he loved to touch my hair, he would sleep whilst playing with my hair and throughout the day liked to brush it across his skin. Now that he is older he still has a obsession with hair. He touches anybody's hair and still rubs it across his body, he even collects hair from brushes and stores it in his room or keeps it down his pants?!
  • He has no consideration for people's personal space. He likes to have his face close to yours or generally touching you and being as close as he possibly can.
  • He is overly hyper. He bounces off the walls from the moment he wakes up to the moment he goes to sleep making some days quite difficult.
  • When he gets too excited (which can be triggered by anything) he pulls a certain face. From that moment we know he will turn violent without intentions of hurting people. This is a daily occurrence.
  • He is very particular about certain things. He will only allow certain people to put his coat on or do a task or he will become very distraught and may lash out.
  • He doesn't like his food touching or he will refuse it. All foods must be seperated and sauce must be in a separate dish.
  • He lines his toys up one behind the other rather than playing with them.
  • He has an amazing memory for his age. He can tell you every detail of a a day out. The noises, the smells and exactly what he seen.
  • He hates certain sounds especially loud noises. He puts his hands over his ears and buries his head into me.
  • He becomes over whelmed in strange environments or crowded places. He doesn't have any confidence and latches onto a person.

I don't know how to think at the minute. My younger daughter (2 years) is always being attacked including us but more importantly her. I would like to help him in some way, becoming more knowledgeable to whatever is going on because it's becoming increasingly difficult when we are not at home too. I feel drained some days.

OP posts:
dimples76 · 06/05/2017 23:04

Hi OP

This part of Mumsnet is not frequently used - I would ask for your post to be moved to SN chat where you should find some more support

PanannyPanoo · 07/05/2017 12:07

Hi your little boy sounds adorable, as well as an exhausting whirl wind. I imagine you are wondering if he could be displaying autistic behaviours. I would be inclined to go to the gp with the information you posted here and ask for some support and an appointment with a consultant. All of the things you mentioned are within the range of normal for a young child. Having all of them together is a big challenge for the child and the parent.
Practically I would get him ear defenders to help in busy or noisy places to help one of his senses.
I always remember how exhausting it was learning to drive and having to thing about legs, hands, direction, instructions. safety and being aware of every other car on the road. I imagine for children with heightened sensory awareness every moment of the day must be like that.
Absolutely exhausting and chaotic.
I would also try and keep a diary of his violent outbursts to see if there are any patterns or triggers.

Can he talk to you when he is calm and offer any explanation?

It could be a smell, a noise, a colour something that seems really insignificant that to him is like finger nails down a black board.

I would also try to minimise anxiety in his life doing a picture diary of what is happening that day that he can keep with him and refer to.
give him lots of warning when things are going to change.
Don't attempt to challenge areas you know he finds hard putting his coat on, keeping food separate etc, there is plenty of time for that.
I would aim to keep life as calm as possible for a while. Until you know more.

I work with children with autism and these are methods that I use. I have also used them with my own Neuro typical children when they are stressed or anxious. They are useful tools. Children often feel overwhelmed and unable to deal with their emotions this can become a tantrum or violence.
I am writing an essay here! If you want to swap emails I would be happy to give some more specific suggestions. Sending a hug. sounds like you have a lot to cope with.

Sharona1979 · 09/08/2018 23:31

You just described my son apart from the hair part he was assessed and they said he’s fine ??? I know he’s not as this was posted a while ago is there any progress ? I’m exhausted and don’t know what to do x

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