Equipment for my Children
Donation protected
My 7.5 month old daughter has generalised muscle weakness along with other physical traits; these include water on the brain, dolicocepahly head shape, oral dyshagia. We are currently under Great Ormund Street to find out the cause and they believe it is genetic. It means we spend a lot of time doing physiotherapy and attending appointments for her. We have been warned either walking aids or full wheelchair use will be needed but until we find out the cause we don't know what the future holds.
Due to her core being weak she can't sit up unsupported and also still can't roll etc. She finally reached for her toys 7 weeks ago and this was a huge step. She is delayed in her speech (she is silent, her cry is weak and she only says mmmm VERY occasionally maybe once a week it is so rare we get extremely excited when she does make sounds) so it is unfortunately not just physical development that is delayed. We are also trying to wean her but finding it hard as she only swallows liquid food anything thicker or with chunks she spits out or gags on.
On top of this our 5 year old has high functioning autism and so he has a lot of time one to one both at school and at home. With the autism he lashes out when frustrated and finds crowds and new situations very distressing.
Due to these facts we have set up a go fund me page to buy sensory equipment that can be used for both children to help their development, we have found that sensory toys will be benificial for both children and have a wish list of items, some more for our baby and some for our boy but most for both of them.
If we raise more then is needed on sensory toys we would see how much over we are and either buy different equipment (specialised supports and seats) or hydrotherapy swimming lessons to help strengthen our girls core muscles.
Thank you so much for reading.
I do write a blog which you can find out more about our daily struggles and joys
https://parentingautismandhypotonia.wordpress.com/
Due to her core being weak she can't sit up unsupported and also still can't roll etc. She finally reached for her toys 7 weeks ago and this was a huge step. She is delayed in her speech (she is silent, her cry is weak and she only says mmmm VERY occasionally maybe once a week it is so rare we get extremely excited when she does make sounds) so it is unfortunately not just physical development that is delayed. We are also trying to wean her but finding it hard as she only swallows liquid food anything thicker or with chunks she spits out or gags on.
On top of this our 5 year old has high functioning autism and so he has a lot of time one to one both at school and at home. With the autism he lashes out when frustrated and finds crowds and new situations very distressing.
Due to these facts we have set up a go fund me page to buy sensory equipment that can be used for both children to help their development, we have found that sensory toys will be benificial for both children and have a wish list of items, some more for our baby and some for our boy but most for both of them.
If we raise more then is needed on sensory toys we would see how much over we are and either buy different equipment (specialised supports and seats) or hydrotherapy swimming lessons to help strengthen our girls core muscles.
Thank you so much for reading.
I do write a blog which you can find out more about our daily struggles and joys
https://parentingautismandhypotonia.wordpress.com/
Organizer
Becca Shayler-Adams
Organizer
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