Ruby-Rose

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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.) 

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Our ‘Support Crew’ 

Family Fund Blog post for October 2016.

When I heard of the theme of ‘Our Support Crew’ for October’s Blog theme, I was excited to celebrate the people that have been there for us as a family, especially over the past 2 years. I am often telling the people who support us how grateful I am, but it’s also great to celebrate these wonderful people in a Blog post.

My family:

My parents live a 5-minute drive away from our house, as both myself and my partner, Paul are unable to drive (for various reasons,) I am so very grateful that my dad is always on hand to help out with travelling to one of the many appointments that I have to take Amber to. This may be for a hearing test at our local hospital, which is 8 miles from our house, Occupational Therapy appointments, and even though Amber’s Paediatrician appointments are at our local medical practice, its difficult for me to keep Amber calm with her younger sister of 18 months present also. My dad will drive us to these appointments and then supervise my youngest, Maisie whilst I go in with Amber. My parents are extremely understanding of Amber’s difficulties, whenever I receive information or reports I place them in a folder and often photocopy for my parents to refer to. They are very good at carrying on certain routines, if Amber goes over for the day, or stays for a few nights, for example by using her visual timetables or sensory toys if they can see she’s getting a bit overloaded. Apart from Amber’s daddy, my mum is the only person that has witnessed Amber’s extreme sensory overloads, this is because Amber is very good at holding her overloads in. I have found that Amber will only display extreme meltdowns with those whom she is most comfortable in the company of – one being my mum. My mum has 25 years Early Years’ experience, she is the calmest person I have ever met and is so brilliant with Amber, she has taken on some ‘Sensory Diet’ activities when Amber goes over, such as making sensory play dough. 

Amber with her Nanna

My sister is also Godmother to both Amber and Maisie, she too has helped out with appointments and will come over to play with the girls to give me a little ‘brain break!’ Their Aunt and Uncle are extremely good at playing role-play ‘shops,’ which is currently a big hit with Amber! My sister recently stepped in and took over when I couldn’t move due to Sciatica in my back, changing and dressing and giving the girls their meals. 

Maisie with her Aunty Bex
Amber with her Aunty Bex

My cousin, who works in childcare, has a great rapport with Amber, only last month she drove us to a local ‘messy play’ session which Amber thrived on. 

Amber with my cousin

Paul’s family:
As I wrote in a previous Family Fund Blog post, Paul’s dad’s family are a fantastic support when we take the girls to visit them in Somerset. Even though there is distance, and we would love to live closer, the support and advice is there via weekly ‘Face Time’ via mobile phone with Paul’s sister and niece, and a weekly phone call to Paul’s dad keeps him up-to-date with all our going’s on! We find that Social Media sites allow us to keep up-to-date even though we live 1 ½ hours apart. 

Amber with her Aunty Vicki
Amber with her cousin
Amber and her cousin have a strong bond – it’s lovely seeing them holding hands whilst going down the slide!
When Amber’s Aunty and Cousin visit she loves trips to the park

Friends and neighbours:
We have a fantastic network of friends and neighbours, this network grew once we moved to our current home in August 2015, and I got speaking to some of the other parents at Amber’s Pre School. Many of these friends are regularly kept up-to-date with Amber’s progress, before meeting these lovely people, I was extremely anxious about taking Amber on a ‘Play-date’ in case she was to hurt another child. My friends have been so encouraging and have taken note that Amber’s play-date time limit is around 2 hours, and will be aware of this if Amber starts experiencing sensory overloads. One of these wonderful friends lives only 2 doors away and is Maisie’s Godmother, and such a great support to our family. Friends have taken us on trips to local parks, animal parks, our local countryside centre and we’ve had a lovely walk through the woods together, which Amber – being an ‘outdoors’ girl, absolutely loved! Our friends are very understanding of Amber’s difficulties and many have reported how she makes them laugh with her infectious personality! When my parents were away on holiday, one friend even took us for one of Amber’s hospital appointments, even though they have children of their own, they always find the time to help us, and for this I am eternally grateful. 

Amber during a ‘Play-date’ with one of her friends

Health professionals:
When I first recognised that Amber had some difficulties, we had quite a mixed response in terms of support when she was around 2 years old. Often our parenting was scrutinised in the beginning as things hadn’t been looked into long enough and a great deal of Amber’s overloads were put down to the ‘Terrible Two’s’ which I did have my doubts about. Because Amber’s behaviours at home were difficult past the age of 2, then 3, then 4 we knew that something needed to be looked into. We were extremely lucky to move back to the area covered by Amber’s Health Visitor from when she was first born, who knew our family well. When I explained the situation to this Health Visitor, she was the first professional who actually said to me: “I believe you.” She witnessed Amber at home, climbing onto furniture, not settling, continually being on the move and sensory seeking. She then arranged for a referral to an Occupational Therapist. 

Education professionals:

Amber had attended a few different childcare settings before our house move in August 2015, at first I was reluctant to move her to yet another setting, but the house move was a necessity as it was vital that we moved from our first floor flat to a house with a garden to benefit Amber’s love of the outdoors and to allow her to burn more energy. I was so glad that we made the move to her Pre-School as a member of staff first introduced us to the SMILE (Sensation Movement Interaction in Life Experiences) Centre in Malvern, Worcestershire which provides Amber with so much support in school holidays. The Pre School leader was the first practitioner to mention Sensory Processing to me, as I’d only come across 1 child in my 12 years in Education. This practitioner organised monthly TAC (Team Around the Child) meetings to ensure that Amber received the best level of support from Pre School and support us as a whole family also. The Pre-School leader ensured that Amber’s transition over to school was smooth via an in-depth hand-over and we are very grateful to the school’s Inclusion Manager who, in only 3 weeks of Amber attending, has already offered a tremendous amount of support and advice. 

Without our ‘support team’ we would be utterly lost, sometimes all that is needed is a listening ear, especially if it has been a tough day, it’s very easy to get caught up in our own family ‘bubble’ at home, and letting people in to help and support only makes us stronger.

Amber loves helping to take her Aunt and Uncle’s Dog, (Lenny) for a walk

Thanks for reading 🙂 

Nicki ~ Sensory Sensitive Mummy 

Paul, Nicki and Amber at 10 months old