Special Needs Diary #10 – An Update

So firstly I am changing the format of this series of blog posts slightly. I’ve changed the name from Autism Diaries to Special Needs Diary. This is purely because we don’t have an official diagnosis and with recent medical appointments and conversations, it just doesn’t feel right to give P1 a definite label yet. However, she definitely is a special needs child and has disabilities.

For those of you who are new to this blog, my eldest daughter P1 was born prematurely and with that has come many health complications. She officially has three diagnosis’; Hypermobility, mild Diplegia and Dyspraxia. We are currently going down the route of investigating the high possibility that she has autism. I’m certain of it and our Paediatrician is also pretty sure but there is a long process to follow.

The thing is, girls present themselves differently and this is definitely the case for P1 which is causing our diagnosis journey to be lengthened. At school she copes, deep down I know that she definitely isn’t coping but I am happy that she can control herself somewhat and get through her school day. But this means that the forms that the school were asked to fill in to help my ASD referral were ranked quite low for ASD which contradicted mine of being quite high.

She is different at home to what she is at school. But you know what, that’s ok. However, it doesn’t help our home life which seems to be spiralling out of control when it comes to P1. She’s so sad lately and there’s been a few friendship, bitch fight type situations at school that are definitely effecting her. I have a huge sense that she is being singled out of girl groups. 

She recently had an occupational therapist go to school to assess her and they made a few changes. They are good changes to help her posture, help her ability to maintain her hypermobility and make school life easier for her body. But part of me feels that these changes are possibly having a different effect. That potentially they are singling her out further because she’s being treated differently.

During a recent Paediatrician appointment there was mentions of P1 showing signs of ADHD. We’d seen it before and agreed with the paediatrician that P1 may be presenting herself slightly different as she doesn’t physically have the ability to jump about and rather it’s going on mentally in her head. She certainly cannot sit still and randomly flaps or makes strange noises.

I have so much going on in my tiny sleep deprived brain that I do struggle to cope with P1. I always feel ashamed and when I have conversations with other people, I feel so much guilt that for some reason I’m struggling to change my expectations for P1. We are getting some home assessments done for P1 so that it will support my side of the argument and we can be put forward for the ASD referal and know we’ll be taken seriously.

I’m super excited for the help and support that we are finally getting with P1. All I want is for her to be happy and I honestly am not sure that she is deep down. I know that I’m not. I want to be able to know what help she needs, how I can support her and help her cope with her own brain a little better. I want to be her rock through bad times instead of someone who tells her off all the time for things she might not be able to help.

I’d love to hear from other parents in my situation. Are you struggling to come to terms with the fact your child is different?

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4 comments

  1. pinapplecrumble64

    Over the last four years, I have gained experience as a teaching assistant in pre school, main stream primary, SEN Primary, and SEN Secondary. I have also worked as a support worker with young people with special needs. I previously partly trained as an occupational therapist, and gained knowledge of childhood development. In my previous career, I was a qualified librarian.

    So this has meant I have helped support children who come under the SEN Umbrella, with their learning. This has included children and young people on the autism spectrum and with aspects of cerebral palsy. I use these lables with caution, because as we know, all children are different and unique. Children can also internalize lables, which can lead to low self esteem.

    I have also gained an insight from parents trying to gain suitable support from allied health care professionals, and education authorities. Through this I feel I am mindful of
    the challenges they can experience in terms of trying to find the most suitable school and support to meet their child’s education needs.

    From my experience as a teaching assistant, I also think it is important that you are able to gather as much evidence, for an assessment, in order to access the support to promote your child’s physical and cognitive function, global development and learning. You are the expert and know your daughter better than any allied health care or education professional.

    But obviously as a parent you also want to gain as much understanding and knowledge as you can about your daughters conditions and how you can support and promote her independence. You may find the following web sites useful:-,

    CerebralPalsy.org.uk;

    http://www.autism.org.uk/

    NHS, and Department for Education Web Sites. (government websites)

    The Guardian Newspaper also has relevant articles relating to supporting children with special needs in educution at:-

    https://www.theguardian.com/education/specialeducationneeds.

    I hope this is not to much information.

    Your faithfully

    Alan Bevan BA (Hons), PG Dip Lib

  2. Our son is on the autistic spectrum and I sometimes find it difficult when we have hard days. I have learnt over the years though to stop comparing and to simply enjoy the children that we have xxx

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