Sensory Processing Assessments
Donazione protetta
"Mum, look at my finger" ... he broke it two days ago and is only telling you now because it's gone black.
"My throat feels funny."... it's bacterial tonsillitis and you have to rush off to the out of hours service because she didn't realise it was hurting.
"Look at my face"... blood is running out of both ears because the eardrums have burst but he didn't know he had earache.
It hurts him to write, she can't keep herself clean because showers, brushing her hair and cleaning her nails feels strange, he wears clothes that are too small because new ones don't feel 'right', he throws himself to the floor so violently that he gets carpet burns, she can't eat food that isn't the same as last time the recipe was cooked, she drags herself around the supermarket floor because the lights are too bright, she has full body tics at nursery because carpet time is so hard, she picks at her arm when she's anxious, he freezes at loud noises.
Sensory Processing Disorder is exhausting. It's like everything happening all at once all of the time. It makes learning difficult, it makes hometime into meltdown time. It makes mealtimes and bedtimes into a battle. It steals spontentaeity from family life.
Everyone has seen fidget toys. They are but one tool in the kit of occupational therapy for SPD. But while they cost only a few pounds, other things are more expensive and, crucially, are difficult to introduce in school without professional input. And here is the problem for us: sensory assessment is not commissioned by the NHS in Bury.
The the cost of a private sensory assessment by a specialist, including reports, liaison with school and formulation of a "sensory diet" is around £300 per child, plus travel costs for the therapist, plus equipment on top.
James currently receives DLA (for Autistic Spectrum Disorder and ADHD) and we really thought we could cover the costs, but he only gets the lower rate so once we bought books for him and us, then paid for summer courses to enable him to have a routine over the holidays, it will take months for us to save up for assessment just for him. And when every day at school or out shopping, or even at home doing normal things like showering and eating places such a burden on them all, it seems like such a long road ahead before we can actually start helping them. As parents, that is hard to bear.
The girls are only starting on their diagnostic journey. Bobbie's referral was made on the 27th February and at the last check it will be weeks before her initial appointment. After that comes evidence gathering and then a panel meeting - for James we had to wait 13 months for this. Services are chronically underfunded and all the time waiting is time when the SPD is robbing the children of the ability to learn and function because there just isn't the capacity in health and education services.
At our last appointment, the consultant was stunned at how the children were. We've worked so hard but have just managed to keep things going day to day at a time when the correct interventions could have made everyday life so much easier for them. This is why we are asking for help, and it's hard to do so. The kids are so clever, funny and loving, we wouldn't change a thing about them... we just need help to change their experience of the world just a bit so they can fulfil their potential.
Thank you.
"My throat feels funny."... it's bacterial tonsillitis and you have to rush off to the out of hours service because she didn't realise it was hurting.
"Look at my face"... blood is running out of both ears because the eardrums have burst but he didn't know he had earache.
It hurts him to write, she can't keep herself clean because showers, brushing her hair and cleaning her nails feels strange, he wears clothes that are too small because new ones don't feel 'right', he throws himself to the floor so violently that he gets carpet burns, she can't eat food that isn't the same as last time the recipe was cooked, she drags herself around the supermarket floor because the lights are too bright, she has full body tics at nursery because carpet time is so hard, she picks at her arm when she's anxious, he freezes at loud noises.
Sensory Processing Disorder is exhausting. It's like everything happening all at once all of the time. It makes learning difficult, it makes hometime into meltdown time. It makes mealtimes and bedtimes into a battle. It steals spontentaeity from family life.
Everyone has seen fidget toys. They are but one tool in the kit of occupational therapy for SPD. But while they cost only a few pounds, other things are more expensive and, crucially, are difficult to introduce in school without professional input. And here is the problem for us: sensory assessment is not commissioned by the NHS in Bury.
The the cost of a private sensory assessment by a specialist, including reports, liaison with school and formulation of a "sensory diet" is around £300 per child, plus travel costs for the therapist, plus equipment on top.
James currently receives DLA (for Autistic Spectrum Disorder and ADHD) and we really thought we could cover the costs, but he only gets the lower rate so once we bought books for him and us, then paid for summer courses to enable him to have a routine over the holidays, it will take months for us to save up for assessment just for him. And when every day at school or out shopping, or even at home doing normal things like showering and eating places such a burden on them all, it seems like such a long road ahead before we can actually start helping them. As parents, that is hard to bear.
The girls are only starting on their diagnostic journey. Bobbie's referral was made on the 27th February and at the last check it will be weeks before her initial appointment. After that comes evidence gathering and then a panel meeting - for James we had to wait 13 months for this. Services are chronically underfunded and all the time waiting is time when the SPD is robbing the children of the ability to learn and function because there just isn't the capacity in health and education services.
At our last appointment, the consultant was stunned at how the children were. We've worked so hard but have just managed to keep things going day to day at a time when the correct interventions could have made everyday life so much easier for them. This is why we are asking for help, and it's hard to do so. The kids are so clever, funny and loving, we wouldn't change a thing about them... we just need help to change their experience of the world just a bit so they can fulfil their potential.
Thank you.
Organizzatore
Daisy Bailey
Organizzatore
