Feeling lost…

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I like happy posts – however this is my therapy – my way of expelling thoughts going around in my head all day…

…It’s the countdown to Christmas my mood should be happy – full of the joys of the season,

But, sadly, my current mood:

Frustrated, disappointed and most of all angry.

I have always been so calm, too calm, sometimes.

I feel so frustrated and angry I feel like giving up the fight for Lou and I hate feeling like this. It’s almost 3 years now since I first started noticing her ‘Sensory Sensitivities,’ we had started to get somewhere with a referral to Occupational Therapy and we were receiving support in the home via a Family Support worker, anyone who knows us will know that Lou complies on the whole at school, holds in her sensory overloads all day (which is bloody hard to do – I know as I’ve done it myself for a very long time,) and offload as soon as she gets home, it’s taken me years to be believed that this is the case after our parenting skills have been knocked several times, which doesn’t do much for self-confidence and constantly makes you question; “am I doing this right?”

But in just 1 week Lou was discharged from both Occupational Therapy and Family Support, OT because she is ‘fine’ at school which I am happy about, however we have received little help in the home – I have been left to pay for a £180 weighted blanket, we were not given any opportunities to rent or borrow sensory equipment to help us at home, even though she has been provided with items at school. Family Support has been cut due to there now being focus on ‘targeted families,’ to which I still do not fully understand the qualification for this. This has left us at the same point as this time last year really, which is beyond frustrating. I can clearly see huge traits of ASD, in particular PDA (Pathological Demand Avoidance) but I am again left to feel like I’m making all of this up and that I’m not believed as these traits are currently only being shown at home. When working in childcare and education I wasn’t sure about labelling children, but I now truly believe that, in order to help and support children in the best way possible, the earlier a diagnosis comes, the better. I’m not sure that I can withstand another year of this fight, I’m exhausted, and so is Lou’s daddy. I would sometimes like to shout at the top of my voice “I’M NOT IN THIS FOR THE MONEY!” As we don’t qualify for DLA, what I am continually fighting for is the recognition that children can be very good at hiding and masking their difficulties, what I am most desperate to avoid is problems in the teenage years. To receive support early to avoid this.Sometimes I have been asked: “How do you know that she feels this way?” Especially if a particular behaviour hasn’t been observed during an appointment, and my answer is always; “because I felt the same, I masked and I suffered a LOT for not telling people how I really felt,” this is where a lot of my frustrations lie.

As people may be aware, that I’ve been helping with the campaign to Save Our Worcestershire Children’s Centres, due to the vital support my family is now missing out on, but also other families out there that are going through the same.

 

Here is an Email I sent this morning to Cllr Marc Bayliss from Worcestershire County Council:

 

Dear Mr Bayliss,

I still have questions regarding the recent funding cuts for Children’s Centres in the Worcestershire area.

I am currently very confused about the current system that was previously referred to as ‘Early help.’ In the past week professionals such as our Health Visitor, Occupational Therapist and School Nurse have all informed me to contact ‘Early Help’ to refer my family back to the Family Support service due to the impact that my daughter’s behaviour has on our whole family in our home environment. It was left to me to explain to these professionals, that my family no longer ‘qualifies’ for Family Support, why haven’t these vital professionals been informed of the new system now that there have been funding cuts? How many more families are being referred to ‘Early Help’ to then be told that they are not a ‘targeted family?’

As you are aware, as I shared my story at the scrutiny meeting held at County Hall, my daughter has additional needs and we now have no support at home for a child that displays extreme behaviours. Her school cannot support me in the home as there is only so much they can do, due to the fact that my daughter complies on the whole at school, she will hold in her ‘sensory overloads’ all day and then ‘offload’ as soon as she gets home. What support do you suggest that my family will now get? Or do we just get left to struggle through, and let every day at home become a struggle, with myself and my partner near desperation? What quality of life will this leave both myself, partner and 2 young children? If I am left stressed and depressed what effect does this leave on my children? It is heart-breaking. I only wish the people making these sorts of decisions could have a window into our lives just for one day to see how difficult things really are.

 I would like clarification to what the label of a ‘targeted family’ actually means please? I am just concerned of how many other families are missing out on support at home, especially those parents with children that have additional needs. 

 

Nicki Perrins.

 

 

It is so upsetting that for someone who finds life a little hard anyway (for various reasons,) that the ‘system’ is making it even harder 😦

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Thanks for reading 🙂

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3 thoughts on “Feeling lost…

  1. Hi Nicki,
    Would you consider joining Families in Partnership Worcestershire? This is the parent carer forum for worcs and will be working with those designing and delivering services to families of children with additional needs in the county.
    The views of parents with your experiences need to be represented.
    We have a facebook page you can look up or you can email me for more info

    Like

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