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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Happiness 

When I heard that the April theme for the Family Fund blog was ‘Happiness’ I was delighted as I really feel
that we’ve turned a corner in our household recently, it has been a year since my daughter, Lou, (5) was
diagnosed with Sensory Processing Disorder (SPD) and Hypermobility, and she is currently at the start of an
ASD assessment. When we first received the diagnosis, it was a tendency to look at what my daughter
can’t do. Gradually over the past year I have learned to ‘tune-in’ to my daughter’s interests and in turn, it  has helped us as a family to really focus on what makes her happy, and learning to embrace her strengths,
and there are so many!

Via researching SPD I learnt the difference between ‘sensory seeking’ and ‘sensory avoiding.’ I soon
realised that Lou, on-the-whole, is a huge sensory seeker and does avoid in some circumstances, e.g.  she dislikes sudden, unexpected and loud noises. Lou is constantly seeking sensory input which can make her appear ‘hyperactive,’ and has an inability to sit still. But via offering a ‘Sensory Diet’ at home, it  allows Lou to get her daily sensory stimuli and we do notice improvements in terms of her
concentration and attention if her sensory seeking needs are met. (I have written a separate post about a  ‘Sensory Diet’) here: 

A Sensory Diet

Sensory seeking makes Lou happy.


Messy Play

From my own experience in working with Early Years children I picked up many ideas of the sort of
materials and equipment for messy play, along with many ideas. I soon found that Lou thrived on this kind of activity so I went with this. From the age of 18 months she enjoyed the feel of running water into  her hands, and if I put out a tray with sand and washing-up liquid in to make ‘Soapy Foam,’ she will usually
tip out the mixture onto the floor and explore the textures with her hands and her feet. 

Play dough is a huge favourite with Lou, especially when we make home-made sensory dough that has
essences added such as vanilla, or dough that has been mixed with glitter or herbs and spices, Lavender was a huge favourite. Lou tends to ask for play dough every day, especially after school, she will hum to
herself whilst she’s squeezing and manipulating the dough, which I’ve come to realise is a sign of ‘self- regulation’ and that she’s receiving the sensory input that she has been seeking. Any activities that involve
paint do not stay on the brush as she absolutely loves to cover her whole hands in the paint and slide her  hands across the paper, or table!  


Sensory toys and equipment

We have created a specific sensory area for Lou, which she has named her ‘calm zone.’ The sensory toys
and equipment have a very calming effect on her, this includes:

• Bubble tube, rainbow projector, stars and moon projector,

• Coloured gel-droppers,

• Light-up sensory balls,

• Home-made sensory bottles that we filled and then sealed that can be shaken,

  • Vibrating neck massager 
  • Torches 

• ‘Treasure basket’ with everyday objects that includes a variety of textures,

• Musical instruments,

• A ‘Peanut’ ball, like a Yoga ball that is peanut shaped,

• ‘fidget’ toys such as a giant ‘Tangle.’

• Soft toys and books, soft rug and blankets,

• Fairy lights.


Lou has free access to this area throughout the day and our hope is to help her recognise when she
needs to take herself off to the area to self-regulate before she gets to the point of a ‘sensory overload.’
There is also other sensory equipment that we have found helps to calm Lou, and in turn makes her
happy, this includes our most recent addition of a ‘Weighted blanket,’ that includes a pattern of her  favourite character – ‘Princess Poppy’ (From the Trolls movie.) Lou has loved deep pressure since she
was a newborn and only settled if she was swaddled. The deep pressure helps to calm her if she’s anxious
or has had a ‘sensory overload,’ sometimes she will just like the comfort of the feel and weight of the blanket.  


Lou has always been a huge lover of ‘White Noise,’ when she was a baby I had to download a ‘White
Noise’ app onto my mobile phone, with the sounds of a Hairdryer or Hoover, sometimes she prefers the
feel of the warm air coming from the Hoover, and not so keen on the noise, and therefore puts her ear
defenders on!


Outdoor play

Lou is a huge outdoors girl! She gets so much out of being in the garden or out at the park, she gets so
much from the ‘Forest School’ sessions that her Pre-School provided and that her current school provides
once a week. Lou is calmer and happier outdoors, this environment provides her with so much sensory
seeking input and stimuli, she makes a bee-line at our local park for the ‘Pendulum Swing,’ and likes to spin
and hold her head back to gain sensory input. She is happiest when covered in mud, the messier the
better, and is happy to climb and jump off equipment, she really has no fear!  


‘Special Interests’ make Lou happy.

Lou has certain interests that engage and motivate her and make her very happy. At the moment, she
loves to collect ‘Shopkins’ figures, she knows all of their names and arranges them into groups, she can tell
people facts about the various characters. Lou will watch ‘Toy Reviews’ on the tablet and then do her
own toy review with her own toys! Even putting on an American accent and saying “Hey guys, today we’re
reviewing…” Lou tends to have a film that she is interested in and will watch the same film over and
over and then will change and repeat with another film, she started watching the film ‘Rio,’ then moved
onto ‘Frozen,’ and now the ‘Trolls’ movie. Currently we are all about the Trolls, she has the movie, the
soundtrack, T-Shirts, Pyjamas, sticker books, plastic figures, watch, pencils, you name it, she has it! I  recently tried to play Lou some classical music to help calm her, but this didn’t work, until I played the
Trolls main theme tune, and she quickly calmed down after a sensory overload! I have sometimes  experienced times when children are stopped from talking about their special interests but I find from experience, that it is important to embrace children’s special interests as you can really reach them on their own level. 


In the past few months Lou’s love for Lego has developed, she now has several Lego sets and I realised recently that she gets so much from putting the Lego bricks together as the ‘click’ in itself gives sensory feedback.


Lining things up and numbers make Amber happy.

This is something that we’ve recently noticed, lining up the smaller characters that Lou collects, especially toys, but also items like household coasters, bathroom products and foam floor mats. This process we have found helps Lou to self-regulate, especially after a busy day at school. Lining up allows her to gain back some control, she likes to see objects and toys all in line, neat and tidy and this makes her feel happy. Lou is also a huge numbers fan, she can recognise 2-digit numbers now on sight, especially the numbers of the stickers for her Trolls sticker book! Lou also thrives in mathematical activities that include shape and repeating patterns.


I know that there are so many challenges to having a child with additional needs, we still have some really challenging days, but around a year ago I felt completely lost, until I started looking at the many positives that my child has, rather than focusing on what she cannot do, and learnt to embrace these positives, and in turn learnt more about my child and about myself. My love has grown for messy and sensory play with my child and I am now completing an online course in Play Therapy.  

My girl is wonderfully quirky, and loves to make people laugh, she naturally makes people around her happy, and seeing her happy warms my heart.

Click to link to The Family Fund website

Our Experiences of Therapy

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In the ‘Calm Area.’

Play Therapy.

This time last year my daughter, Amber was still without an official diagnosis, we knew that she was a huge ‘Sensory Seeker,’ and I had noticed from an early age that she struggled with ‘purposeful play,’ even to this day, (at almost 5 years old,) and even though we provide her with a variety of toys and resources, she has difficulty in using them for story enacting, for example, she prefers to line her dolls up, rather than to come up with a situation or characters for them.

In April 2016, Amber was diagnosed with Sensory Processing Disorder (SPD,) around the same time I was introduced to a local therapy centre where hourly sessions of ‘Play Therapy’ were offered on a 1:1 basis with a SEN teacher, these sessions also welcomed parents to get involved with the activities on offer. The staff at the centre collected information about Amber’s current interests and ask for any problem area that we were experiencing at home, after each session the staff asked Amber what activities she would like to do in the next session and I really liked how child-centred this was. Amber also had her own visual choice board, where she could see the activities on offer and chose which activity she’d like to do 1st, 2nd and so forth. I explained that one of the areas that we were working on at home was eating, as Amber was only eating the same foods every day, such as breadsticks and toast, she tended to stick to the beige and dry foods. I also explained about what I had observed in terms of purposeful play at home and I shared Amber’s love of any messy/sensory activities as she was a huge sensory seeker and thrived on these type of activities.

I read that:

“Play therapy is generally employed with children aged 3 through 11 and provides a way for them to express their experiences and feelings through a natural, self-guided, self-healing process. As children’s experiences and knowledge are often communicated through play, it becomes an important vehicle for them to know and accept themselves and others. This approach is common to young children.”

Source: https://en.wikipedia.org/wiki/Play_therapy

Over the 15 sessions that Amber had we, as parents, saw a great deal of progress in Amber’s confidence to select new resources, at first she wanted to try out every single activity in the sensory room, and would often flit between activities and rooms. The therapy centre has 2 main cabins that house a sensory room and music therapy room, there is also a sensory garden that houses a chicken coup and their very own named pet chickens! The staff also have access to rooms for occupational therapy and a purpose-built room for cooking. We also noticed an improvement in Amber’s concentration and purposeful play, especially with small-world play and she developed an interest in playing ‘shops,’ which she has carried on to the present day.

Amber experienced a wealth of activities during her time at the centre, these included:

  • Messy Play – shaving foam in the water tray and hand and feet painting.
  • Moveable and mouldable sand.
  • Sensory room exploration – bubbles tubes, light changing wall, fibre optics and the ‘snug’ enclosed area.
  • ‘Magic Carpet,’ where images such as an interactive fish pond are projected onto the mat on the floor and moves when the children touch it.
  • ‘Small World’ play – with a large dolls house, farm buildings.
  • Use of the music room – exploring multicultural instruments such as African Drums.
  • Physical outdoor activities – such as balls and hoops, to help support perseverance.
  • Feeding chickens and interacting with them in their enclosure.
  • Creative story telling – using story sacks, e.g. retelling the story ‘Room on the Broom.’
  • Cooking sessions – making cookies, and staff even found a specific dairy free recipe in light of Amber’s dairy allergy.
  • Making sensory playdough.

 

We hope to continue to take Amber to the ‘Play Centre,’ (as she has named it,) as they also provide clubs in the school holidays, such as messy play club, dance club and gardening club.

I previously wrote a post dedicated to the specific centre that Amber attends, please find this in the link below:

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Relaxation Therapy. 

Amber started an intervention at school in September 2016, when an outside agency comes to deliver relaxation sessions.

These “strategies mimic clinically-proven anger management and mitigation treatments such as therapeutic exercise and yoga, breathing exercises, and mindfulness exercises. These can be used as anger management tools, ways to help at moments of meltdown, or methods to make time-outs constructive rather than punitive.”

Source:www.relaxkids.com

 

Amber’s sensory processing difficulties and anxiety can manifest themselves though her displaying frustration, at home especially, (where she feels most comfortable to release the tensions and frustrations,) we experience a great deal of aggression in the form of hitting, throwing objects, shouting, climbing on furniture and rough-housing behaviours with her younger sister. If it gets to the point where Amber experiences a meltdown or sensory overload, (as I like to call them,) we use the techniques that Amber has been taught in her relation sessions at school.

This may be to ask Amber to lie flat onto the floor with a teddy on her tummy and count to 10, whilst breathing slowly in an out. We have also taught Amber to “smell the flower, and blow out the candle,” for a technique to help calm her. The most recent one she has learnt is to “Breathe in and imagine smelling the sweet hot chocolate. Breathe out to cool it down.” Which I quite like and will practice this at home.

 

Thanks for reading 🙂

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