This is an attempt to bring all the various resources I have found into one central repository. I will endeavour to update this regularly, and please feel free to let me know if there is anything I should add!
THINGS TO READ
ORGANISATIONS, BLOGS, PODCASTS, SERVICES
GEAR AND KIT
TIPS AND IDEAS
THINGS TO READ
By Dana Wechsler Linden, Emma Trenti Paroli and Mia Wechsler Doron.
I found this one especially helpful as a guide to all things in the NICU.
This book by Karen Lasby and Tammy Sherrow was published last year and I have only just found it!
I wish I had discovered it last year, it is a gem.
Great book discussing neuroplasticity and how the brain can change.
by Anat Baniel
Anat Baniel was a student of Moshe Feldenkrais, who developed a type of exercise therapy that aimed to help reorganise connections between the brain and the body to improve movement. Using these same principles, she developed her own method for children and adults.
In Kids Beyond Limits, she takes you through her “Nine Essentials” for how to tap into the brain’s potential.
“Andrew Solomon’s startling proposition in Far From the Tree is that being exceptional is at the core of the human condition – that difference is what unites us. He writes about families coping with deafness, dwarfism, Down’s syndrome, autism, schizophrenia, or multiple severe disabilities; with children who are prodigies, who are conceived in rape, who become criminals, who are transgender. While each of these characteristics is potentially isolating, the experience of difference within families is universal, and Solomon documents triumphs of love over prejudice in every chapter.” – Good Reads
I found this book so thought-provoking and mind-changing. He sums up so many of my feelings so well: “This book’s conundrum is that most of the families described here have ended up grateful for experiences they would have done anything to avoid.”
by Sonia Sumar
I have not read this one yet, but Lily has been fortunate enough to attend a special needs yoga programme at the Yama Foundation in Hong Kong, and I have already seen how it can calm and soothe her.
I am waiting for a revised edition to become available on Kindle. It was highly recommended by Rachel Harrington and Jessica Hill of The Sensory Project Pocast.
Journal article that reviews evidence for different interventions for preventing and managing cerebral palsy.
This is a helpful guide to cerebral palsy interventions for children, based on the results of the “State of the Evidence Traffic Lights 2019” study referenced above. Compiled by the Australian Cerebral Palsy Alliance.
This book by Karen Pape, a neonatologist and clinical neuroscientist. In it she challenges the status quo and gives examples of babies born with early brain and nerve injury who exceed early expectations. She is a champion for integrating the science behind neuroplasticity into interventions to improve outcomes.
I found the book inspiring and it has certainly played a part in pushing me to find the best possible interventions for Lily.
Follow Your Instincts is a collection of reflections, observations and tips from parents of children with cerebral palsy, collated by the Australian Cerebral Palsy Alliance.
This is a great resource to help you understand what having cerebral palsy means for your child, and give you some tips for how to navigate through the experience.
New book written by the mother of a child with spastic diplegia, as a practical guide for families as to what to expect throughout their child’s life. Collinson writes that it is the book she wished she’d been given the day her son was diagnosed with CP.
Of all the books I have read by parents describing their experience of parenting a disabled child, this one resonated with me very strongly. Jennifer Johannesen articulates so well many of the recurring themes that parents raise.
ORGANISATIONS, BLOGS, PODCASTS AND SERVICES I HAVE FOUND USEFUL
This amazing organisation in New York uses Cardboard Carpentry and 3D printing to custom make assistive devices for people with disabilities.
They inspired me to make this for Lily!
Instagram account for a little girl born at 34 weeks who has CP and is learning to walk.
Headquartered in New York, the CSF is dedicated to transforming lives for people with cerebral palsy today through research, innovation, and collaboration.
The CP Alliance is a non-profit organisation in Australia that provides a broad spectrum of services to people with a disability and their families.
Good online resources and access to the latest research on cerebral palsy in Australia .
Excellent podcast about developments in cerebral palsy research facilitated by the mother of a child with CP.
Dr Tony Karpelowsky is an excellent chiropractor in South Africa with a specialism in paediatrics.
Instagram account about a mum and her beautiful little girl with CP.
The CanChild research hub at McMaster University in Canada focuses on children and youth with disabilities. The F-Words Hub provides more information about the “F-Words” – 6 key areas of child development for children with disabilities:
Functioning, Family, Fitness, Fun, Friends, and Future.
A program that provides modified, ride-on cars to young children with disabilities so they can move around independently.
Karen Pape was a renowned neonatologist and clinical neuroscientist who challenged the system to raise expectations for babies born with early brain injury. I highly recommend her book, The Boy Who Could Run But Not Walk – see link in above section.
Dr Berman was responsible for spotting Lily’s farsightedness when she was 12 months (9 months adjusted) old. He is an excellent paediatric behavioural optometrist in Johannesburg.
An incredible project that I believe was spearheaded in the UK but has since spread to other countries. It is built on the premise that the “tentacles” of knitted octopi, mimicking the umbilical cord, can give preemie babies security and comfort.
I got very excited about this idea and Lily’s granny, one of her aunties and some lovely friends of mine very kindly rose to the occasion and made some beautiful octopi for her. She especially loved them when she came home and we would dangle them above her head.
Fantastic team of orthotic specialists in Hong Kong, who have helped us with a cranial helmet and orthotics for Lily.
The SNN was set up in Hong Kong by the parent of a special needs child. The organisation connects parents and caregivers of children with special needs through different platforms. It supports, them on their journeys, and empowers them to make informed decisions about their children’s development and their own wellbeing.
SPOT is the interdisciplinary therapy centre Lily attends in Hong Kong for her physio, OT and speech therapy. They are really great, Lily loves them and they deserve a shout-out!
Anisha Sakhrani is an Anat Baniel Method practitioner who works with children with special needs.
Lily has been fortunate to be able to attend intensive lessons with Anisha and has benefited from this non traditional method for building neural pathways.
Karin Siegler was our midwife and I can’t recommend her services enough. She has 25 years’ experience and offers an online midwife consultancy.
I recently came across Willow’s CP Journey which is at once an instagram account, a blog and an e-resource hub developed by a mum, Tara Thompson, who’s little girl, Willow has CP and ASD.
She provides great tips for home therapy and how to make it fun and interesting and engaging. You can also buy her e-pamphlets for different types of home-therapy.
The Yama Foundation in Hong Kong was founded to make yoga, arts and meditation accessible to Hong Kong’s underserved communities, including those with special needs. Lily has been very lucky to be included on a yoga programme for children with special needs, and despite an interruption due to Covid-19 has benefited so much from the calm and focus it brings her. It takes a simple “om” and she immediately quietens, relaxes and listens. Thank you to Yama for bringing this to our baby girl!
GEAR AND KIT
There is a wonderful organisation in Hong Kong called the HK Council for Early Childhood Education and Service (CECES), a social work charity. We were instructed by nurses in the NICU to call a number and after providing proof that Lily was in the hospital, as if by magic, a delivery of a box of tiny nappies (for less than 2kg babies) appeared at our door a day later. Please contact me if you would like to find out more.
It is worth renting one of these if you are able to. They do the job much more efficiently than handheld pumps and especially, if like me, you end up exclusively pumping, it can be a lifesaver. Whilst it does make you feel like a cow in a dairy, and whilst there are some really cool looking new pumps available on the market, I would go with the Medela “Symphony”.
In HK, these can be rented from Celki Medical Supplies.
Tink ‘n’ Stink is an awesome UK site for all things “oral therapy”, including Ark products – the grabber, the squeezy straw bottle, flat and textured spoons, you name it!
Here’s a great article I found on CP Daily Living about finding the best seating solutions for a child with CP using mainstream equipment. It’s a little outdated now but I have still found it quite helpful!
Lily loves bathtime mainly because she gets to lie down and kick and splash. She also loves to sit up and play with her toys, but we have struggled to find a good way to support her in sitting so that she can face us and we can play together.
Our OT suggested that we use a plastic laundry basket. The ideal shape and size would be something similar to this… but we have not been able to find anything like this in Hong Kong.
So we have adapted one using pool noodles to soften the edges, and it is almost perfect.
As Lily gets older and wants to play with her little friends who are all toddling around, we are on the lookout for something that enables her to be free to interact with them easily and with some mobility.
Frog Mobility is a family business that developed firstly a floor mobility solution, the Frog, for their little boy with spina bifida.
They have also developed a little wheelchair suitable for children from 9 months till 4 years old, called the GoBro. Lily absolutely loves her “wheelie”!
This has really helped to give Lily a sense of how she can move herself. She does tend to extend her legs so we have to work on using her knees to propel her forward, but I feel it has done a lot to help her coordinate left and right. She loves going on this thing!
Not quite The GoBro but this very Heath Robinson contraption allows Lily to sit at the same height as her little friends and play with them as they toddle about the playground.
We simply strapped a booster seat on to the DIY Crawling Frame referenced above.
WARNING: It is not 100% stable and requires full time adult supervision.
This playmat from Ikea is a fantastic, relatively inexpensive option, to use as a playmat, come therapy block. It folds into different heights, and comes in shares of green, pink and grey.
Ikea is actually a great resource that I always forget about – these two items, the children’s stool and step stool are great to use as a little table to play on while kneeling, for example.
These can be great to practice supported sitting astride and weight shifting. I saw these recently at Decathlon and thought they were good value.
We have recently bought Lily the GoTo seat and Splashy from Firefly and really love and recommend their products in general.
They design WITH THE CHILD in mind. No institutional-looking drab equipment here. It’s bright and colourful and aimed to make the world around more accessible for kids with physical disabilities.
TIPS AND IDEAS
A premature birth and all that follows is a harrowing experience for mum, dad and baby. I highly recommend seeking professional help to process the trauma of what you are going through.
One classic symptom that many parents experience is post traumatic stress – you suppress your emotional reaction just to get through it, and then days, weeks, months or even years later, it can hit you with its full force.
I still have days when I find myself crying uncontrollably all mixed up with feelings of guilt and sadness and grief.
One of the best things I did in the early weeks of the NICU was to see a therapist. It helped to talk to someone and to vocalise and acknowledge everything I was feeling. It helped give me the strength I needed to get from one day to the next.
In the NICU they added human milk fortifier (HMF) to my breastmilk for Lily to boost its calorie content. Because Lily’s weight was always in the lower percentiles (around 30th %) our paediatrician recommended we do the same when she came home.
We struggled to mix it in well and to get her to tolerate it, but in the end the trick was to mix it with a little pre-boiled water to dissolve it and then add it to the expressed breastmilk (EBM).
The brand we used was Enfamil. We discovered they produce small bottles of ready to drink extra calorie preemie formula, which we began to give Lily at night to supplement the EBM.
When she was about 6 months old (3 months adjusted) I started to mix a little rice cereal into the EBM once a day.
All these extra bits helped to add a few extra calories.
Once we moved Lily on to formula milk entirely (about 8 months, 5 months adjusted) I dropped the extras.
Please speak to your doctor or paediatrician about your baby’s nutrition before using any of these products.
Don’t get me started on this topic! Baby clothes in general seem to be designed by people who have never had them.
In our NICU the preemies wore tiny white hospital gowns, which were designed to accommodate all the tubes and wires. I subsequently discovered a few companies that make preemie clothes for this purpose (love Little Mouse in the UK).
I was determined that Lily was going to wear proper baby clothes so we found the smallest babygrows we could (ones that opened sideways and attached with press studs). Whilst she swam in these and wore them for months and months, I am convinced that having proper clothes made a difference.