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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Today I spoke out in public for the first time.

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This will be my 3rd Blog post in relation to the Worcestershire Children’s Centre’s funding cuts.

On Friday 21st October a scrutiny meeting was held in a cramped Lakeview room at Worcestershire County Council. I forced myself to speak in this meeting to share our story once again, to make my presence known and to share how the funding cuts are already having an effect on the support my family receives.

Here is a copy of the passage I wrote and read out during the ‘Public Gallery’ section of the meeting.

I wanted to bring my daughter to this meeting today, but I’ve had to leave her with her Grandparents, she wouldn’t have coped with the unfamiliar room, the lights, the noise, etc. How do I know this, you may ask? Because I felt very much the same as a child. There were no Family Support Workers when I was a child, my parents received no support, and the result is today, that I’m a 33-year-old that has been mis-diagnosed.

You may or may not already be aware of my family’s story. I have written 2 Blog Posts around the funding cuts for Worcestershire Children’s Centres, and our story was featured in the Worcester News. I Blog under the name of ‘Sensory Sensitive Mummy.’

My daughter, who is 4 and a half, has Sensory Processing Disorder (SPD,) With traits of ADHD and Autistic Spectrum Disorder (ASD) she also has Hypermobility in her joints and her school are now questioning Dyspraxia. We are currently waiting to find out the extent of a genetic anomaly that has been picked up via blood tests. My daughter is neither ‘naughty’ or ‘spoilt’ she has a neurological disorder, I have dedicated the past 12 months to researching Sensory Processing Disorder.

My daughter experiences sensory overloads and holds them all in during the school day, as soon as she reaches home she experiences violent outbursts, (or meltdowns,) she hits, kicks, spits, and is very rough with her 19-month-old sister. She requires constant supervision. If my daughter thrashes herself back and hits herself, will I get the blame is she’s hurt and will social services come knocking on my door? I have asked several times for support in Restraining Training to keep my daughter safe at home, I was told that this training is no longer available. From August 2015 until January 2016, we received 1 visit per week from a ‘Family Support worker’ from a Worcestershire Children’s Centre, this support turned our family life around and provided continual support as other problems came up in terms of my daughter. The Family Support worker, arranged ‘Multi-agency’ meetings for all the professionals involved in my daughter’s care, they would also chase reports, now I’m left to do all this all on my own, and with caring for 2 young children I am physically and mentally drained. As of September 2016, we have received 1 visit from the Family Support worker, where do I go to for support now?

Who do I talk to about issues that continually arise from having a child with Additional Needs? Schools are already pushed to their limit, they cannot provide me with the same emotional and practical support that a Family Support worker can, but my family have been discharged from this service because we don’t live in a disadvantaged area?

Please advise as to where I should go to for support and advice from now on?

 

I wondered if the councillors involved in making the decisions regarding the funding cuts, realise how difficult it was for people like me, who shared such personal information about our family life. At times I felt like the walls were closing in on me in that room and that everyone’s eyes were on me as my youngest child wanted to get up and explore the room, to be told that we couldn’t let the children explore due to “wires” which I could only see one, which could have easily been moved! I started to feel extremely short of breath and my daughter was restless so I had to leave the room for a time. I wonder if any of the counsellors involved in the decision making could ever understand how difficult it is for people like me to share such personal information in a room full of influential people. I do not understand politics, I don’t know if what I said was the right or wrong thing, after Cll Bayliss shot me down on stating that “we have been discharged from the Family support service because we don’t live in a disadvantaged area,” this is what I’ve been told – and that we are seen as a family that is “no longer in need of this service,” and not a “family at greatest need.” If we haven’t been discharged due this factor, then why have we been discharged? Sadly, I didn’t get my answer! Cll Bayliss proceeded to say that I could stay behind and he would talk to me about this, sounding rather like I was back at school and had to remain behind in class! My daughter was tired, my brain was frazzled and I just wanted to go home, sadly no matter how much you pour out your heart to this man, the response is always the same, “No Children’s Centres will close,” that may be true, however the 3 different weekly stay-and-play groups that I attended with my child, only this time last year, no longer exist. Yes, the buildings are still there but there is hardly anything going on in them anymore! The only conclusion that I can come to is that this individual actually has a heart of stone L

It’s also very worrying that cuts are being made to the health visiting service, my Health Visitor was the first practitioner to recognise my daughter’s difficulties in our own home, until this point my parenting was being blamed and I came to believe that I was a terrible mum. This Health Visitor also arranged for my daughter to be referred to Occupational Therapy, as there had been a mix up. She sped up the process after a 12-month wait and this support has been vital for my child. This same health practitioner supported me through having 2 children with allergies to all dairy products and egg, without her I wouldn’t have known where to turn for help.

I have spent the past 12 years of my life dedicated to teaching children in the Early Years from 4 months to 11 years, I am so very passionate about the early years, as this is the foundation of every child’s journey in life. I am so passionate about helping and supporting other families, and worried that families that are in the same place as we were a year ago won’t get the support that they most desperately need and deserve.

One thing is for sure, I definitely know who I won’t be voting for in the next local elections!

 

Thanks for reading 🙂

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My two precious children, the very reason why I gained the courage to speak out today, their futures matter, and so do those of other children. 

 

 

 

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Save Our Children’s Centres Campaign poster 

As one of the admins for the ‘Save Our Children’s Centres’ (Worcestershire) campaign, I have designed this campaign poster 🙂 including a photo of Lou’s trademark hands! 

Anyone who has read my 2 Blog posts, and/or read the newspaper article with our story, you will know how the local children’s centres have supported us as a family since August 2015. Without this support we’d be completely lost – however we have already seen the effects of these cuts, as opposed to weekly visits last year, we’ve only had 1 home visit due to the funding cuts and staff redundancies. The family support workers are being told to target and support families in ‘areas of high deprivation’ but what about families like ours who just needed support at home that have a child with additional needs, our worry is so many families and children are going to slip through the net 😦 it doesn’t matter how much money you have, or what your social status is – every child and their family has the right to support. 
If anyone would like to support us please visit Twitter @SOCCWORCS
Anyone is welcome to join and you don’t have to live in Worcestershire 🙂 
Thanks for reading 🙂