Advice needed Sensory processing disorder

My daughter 3rd child aged 5, intelligent,caring, wonderful, expressive is not diagnosed however I do feel with the collection of symptoms she has that it is SPD.

screams and cries when it rains, it hurts her ears, the noise on the roof is too loud.

The wind is too scary, even the lightest wind, she can’t breathe.

The bath, just screams from start to finish.

Eats a beige diet, won’t mix food or have storage like a pie, all food has to be separate and not touching.

Reluctant to cuddle 

When touched she flinches or says ouch.

Suffered with severe constipation from 8 months to 4 yrs of age.

Reacts irrationally about everything, moths, a small scratch, brushing her hair, and responds with only I can describe as a strangled cat noise.

There are few more other things but I’m so tired and emotional I can’t think straight.

I'm a great mum, have two adult children aged 22 and 20 one who lives in China, one who lives at home, I have a baby aged 1 year, however these are not new behaviours since baby has arrived.

Her father and I co parent and have never been together as mummy and daddy, he sees her every other week, she used to stay at his but the journey is 4 hrs away and she doesn’t want to stay there anymore.

I can’t say he’s helpful with this at all, in fact I feel he makes it worse.

Ive worked in education and children’s services for over 20 yrs and I can respond well to children who require boundaries etc and parents who need ideas to set those boundaries. This is so different and I feel out of my depth.

Im just so tired, and exhausted, I want to cuddle my little girl and tell her it will all be ok, to snuggle with her and listen to the rain outside and watch movies.

She was referred to Paeds in April and we are still awaiting our first appointment.

Any ideas or support and guidance would be amazing. 

Parents
  • She is obviously very different from the first 2 so makes it very hard for you! Having 5 yr old with issues and 1 yr old with Dad 4 hrs away must be exhausting. Hope you get help from the experts but in mean time maybe look at training yourself using the courses on the profeßional pages on this website, to get an insight into her world, and some tips on how to care for her? 

    Can you ask her to help bath baby to overcome fear of bath? With the fear of noises I dont think you can 'cure' that but have a means of managing it, e.g listen to stories or music through headphones until the rain/wind stops. Make sure she knows you understand it is a real fear, she is very brave and the world is a scary place for her but she will learn to cope as she grows up and gains experience. 

    Did they test for coeliac when she was constipated, as it is a symptom people dont realise? Would explain a general distrust of food, and is more common than people think. Made my son miserable until diagnosd, then once on gluten free diet was a changed person. ( Although if you think this is a possibility, dont start the gluten free diet before coeliac diagnosis, as tests wont work and then you have to go back to eating gluten to get diagnosed  which is a complete nightmare. )

    If its any help, setting boundaries isnt really relevant, and managing autistic child you get some disapproving parents in the playground who think you are not being strict enough, but you learn to ignore it as these parents have not experienced what you are going through. Your child is amazing and so are you.

Reply
  • She is obviously very different from the first 2 so makes it very hard for you! Having 5 yr old with issues and 1 yr old with Dad 4 hrs away must be exhausting. Hope you get help from the experts but in mean time maybe look at training yourself using the courses on the profeßional pages on this website, to get an insight into her world, and some tips on how to care for her? 

    Can you ask her to help bath baby to overcome fear of bath? With the fear of noises I dont think you can 'cure' that but have a means of managing it, e.g listen to stories or music through headphones until the rain/wind stops. Make sure she knows you understand it is a real fear, she is very brave and the world is a scary place for her but she will learn to cope as she grows up and gains experience. 

    Did they test for coeliac when she was constipated, as it is a symptom people dont realise? Would explain a general distrust of food, and is more common than people think. Made my son miserable until diagnosd, then once on gluten free diet was a changed person. ( Although if you think this is a possibility, dont start the gluten free diet before coeliac diagnosis, as tests wont work and then you have to go back to eating gluten to get diagnosed  which is a complete nightmare. )

    If its any help, setting boundaries isnt really relevant, and managing autistic child you get some disapproving parents in the playground who think you are not being strict enough, but you learn to ignore it as these parents have not experienced what you are going through. Your child is amazing and so are you.

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