Ruby-Rose

C66B5064-344A-4069-AEA0-0A391190583F.jpeg

I have had a break from blogging for almost a year now. But I wanted to re-publish this page to continue the work I started on spreading awareness and acceptance for girls on the Autistic Spectrum.

I’ve written for the charity ‘Family Fund’ several times over the past 3 years, since finding out about the wonderful support they offer families who have children with additional needs. 

I just wanted to share my friend’s story about her daughter Ruby-Rose who is 16 months old.

On Saturday 13th October 2018, my friend contacted me to say that she’d received a letter stating that Ruby-Rose does not meet the criteria for a Family Fund Grant. In the summer of 2018, after seeing Ruby-Rose several times I encouraged her family to apply for a grant after receiving 3 years of grants that had significantly made a difference for my eldest daughter, Amber (now 6.)

Since the age of 3 months, Ruby’s mother, Claire has been asking my advice as she noticed something regarding Ruby’s development, some may say that this is very young, but I can completely relate as parents, we are the experts on our own children.

Ruby has been seen by a great deal of professionals at her young age, she also received hospital care for Meningitis at 5 months old, this was an extremely worrying time for the whole family. Ruby has been seen by Health Visitors, GPs, Paediatrician, Physioterapist, Specialist Play, and staff at a local SEND school who are offering support as Ruby will need to attend this school when she teaches Nursery/Reception age.

Ruby has been assessed as having a cognitive age of 3 month old, she does not interact with her 2 sisters, to this I’ve witnessed on several occasions. She doesn’t respond to her name and has a great deal of sensory processing difficulties. On the whole, Ruby is a ‘Sensory Avoider’ she is startled by sudden movement, loud and unexpected sounds, has difficulty eating foods that aren’t soft/puréed and therefore has a very restricted diet. She is very tactile defendant, she doesn’t like physical contact and gets distressed, especially when being examined by professionals, such as a Physiotherapist, making it difficult to work with her.

Ruby is currently screams for hours on end and demands and needs around the clock care, she is also having sleep difficulties, finding it hard to settle at night.

Ruby is calmed via sensory equipment such as lights, we known this from when the family attend the ‘stay-and-play’ sessions at the local SEND school and they’ve also taken her to an ‘Autism and Additional Needs’ stay and play session locally. The huge barrier for Ruby’s family, is that the specialist equipment and toys she so desperately needs are very expensive, as you are well aware.

Ruby does not play with regular toys, as ‘Neurotypical’ children her age would, as they are not age appropriate due to her Global Developmental Delay (GDD.)

Ruby requires a calming space she can relax in when she becomes overwhelmed and goes into sensory meltdown. A place where her parents know she will be safe with toys she can not put in her mouth and hurt herself with.

As Ruby hates physical contact, her parents can not hold her to calm her, she doesn’t give eye contact and becomes distressed when doing day to day tasks with her such as feeding and changing her. As she does not sleep through the night, she will sleep for 15-30 minutes and wake up distressed, screaming headbanging to the point she is sick.

Claire, Ruby’s mum, can not work due to Rubys complex needs, and this why the family are struggling financially. All they want is to provide their daughter with the specialist toys and equipment that she desperately needs.

I’ve always been a huge advocate for the work that Family Fund have done for families, I’ve shared this via the parents support group I coordinate locally, to which Ruby’s mother is a member. My own family have had our photographs taken to use for Family Fund promotional materials.

Mum heart is literally breaking for this little girl and her family, I urge you to please re-consider your decision.

Thank you,

Nicki Perrins,

Mum to Amber and Maisie,

Blogger At http://www.spectrumgirls2.com

and coordinator of the Pershore Additional Needs Support group (PANS.) 

E52FF0F5-C34E-426F-9337-C0E40C6F1869.jpeg

 

Family Fund 


I am in regular contact with Laura at Family Fund’s marketing department – I write monthly for the Family Fund’s Blog so I said that I would try and share this poster for them. 

Family Fund are a charity that provide grants, they provided my eldest daughter with Sensory toys and equipment and you can apply yearly. 

I have recently guided another family through the application process so please share if you know anyone who may benefit. I’m happy for people to email me for more info. 

sensorysensitivemummy@outlook.com

https://www.familyfund.org.uk/faqs/are-we-eligible-to-apply

Here’s a link to the story behind Lou’s grant from Family Fund: 

A Life Line for Lou

Family Fund are also on: 

Facebook

Twitter: @FamilyFund

Charities I like to support and useful Websites and support groups

There are 3 charities in particular that I like to donate to: 

www.facialpalsy.org.uk

This is a topic that is close to my heart, Facial Palsy UK completes research projects which aim to create a better future for everyone affected by facial paralysis. As I get older I may enquire about surgery, as my skin loses its elasticity. Please see here for more on my personal story: http://wp.me/p7BVlE-1m

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

Find out about diagnosing autism (including Asperger syndrome), and the impact on people and their families, and find advice and support on all aspects of life with autism.

I’ve gained such a year deal of information from NAS, via videos and research articles. I recently found lots of information regarding Pathological Demand Avoidance.

www.nspcc.org.uk

This is a subject that this very close to my heart. My closest friends and family know why I am passionate for this cause. It doesn’t matter if your 3 or 33, child abuse and neglect should never happen and there is no excuse for this behaviour. These actions have so many implications, not only the child at the time, but for the rest of their lives they carry it with them and there’s evidence to suggest that certain aspects can in fact, be passed on to future generations.I wish I could give more, but I can help put a little towards helping this extremely important cause.

Helpful websites:

The following are links to websites that I’ve found very useful and helpful in the past few months, all of the following also have a Facebook page/group, and can be found via the search bar.

SPD Parents Support

A great support group for support and advice from other parents. USA site but very helpful.

www.thesensoryspectrum.com

A website dedicated to sensory kids and their parents.

www.sensoryintegration.org.uk

The SI Network (UK & Ireland) is a not-for-profit organisation, promoting education, good practice and research into the theory and practice of Ayres’ Sensory Integration.

https://www.spdstar.org/

Research and education for adults and children with SPD.

www.theisabellatrust.org

Support for parents and carers of children with ASD and/or sensory processing difficulties.

www.lemonlimeadventures.com

Author of Sensory Processing 101. Adventures in homeschooling, natural living and personal experiences.

http://www.arcos.org.uk/smile

SMILE stands for Sensation Movement Interaction in Life Experiences. We help a variety of children with profound and multiple disabilities. Lou attends here for hourly sessions, especially in the school holidays it’s amazing 🙂

For more information please see: http://wp.me/p7BVlE-Y

www.pdasociety.org.uk

Sharing information relating to Pathological Demand Avoidance syndrome.(PDA). Registered charity.

www.awarenessforautism.co.uk

Awareness For Autism is an on-line support network for families and individuals affected by autism.

www.autismwestmidlands.org.uk

The leading charity in the West Midlands for people with autism. Produced a booklet called ‘Sensory Profile.’

www.adhdfoundation.org.uk

Promoting inclusion in mental health, education & employment. Endorses University of Derby’s online course I’m currently completing in Autism, Asperger’s syndrome and ADHD.
Improving life chances through better understanding and management of ADHD, change the negative perception of ADHD into a positive.

www.time-to-change.org.uk

Aims to end stigma and discrimination experienced by people with mental health problems.

http://www.mind.org.uk/

The mental health charity. 1 in 4 people experience a mental health problem every year. Offers support and advice.

http://themighty.com/

Facing disability, illness and mental illness together, some great articles on here.

http://www.redtedart.com/

Art and craft ideas for kids.

Siblings Project

The Siblings Project – every 15th of each month can link up with photos of siblings. Please see more here:http://wp.me/p7BVlE-5v

www.learningspaceuk.co.uk

Specialised Products Aiding Child Education – great sensory toys and equipment, based in Northern Ireland but can order online.

www.cafamily.org.uk

Contact a Family (CAF) – national charity for families with disabled children.

www.familyfund.org.uk

I have written how this wonderful charity help support children with disabilities via grants. Please see: http://wp.me/p7BVlE-1u

SENDIASS

Supports both carers and young people with SEND.

www.specialneedsjungle.com

Parent-led news, information and informed opinion on special needs, disability, children’s mental & physical health conditions.

Hope that this helps 🙂

Thanks for reading 🙂

img_20160814_152459.jpg