Fostering a child with a disability - If we can do it anyone can.
Date published
07 February 2025
07 February 2025
What started as a typical foster placement quickly became a life-changing journey when our baby was diagnosed with medical complications requiring 24/7 oxygen therapy. While the learning curve was steep, our love and commitment made every challenge worthwhile.
Our journey as carers for a child with a disability began as a happy accident. The baby was placed with us as having no additional physical or emotional needs. Unfortunately, as he was born prematurely a few complications surfaced which meant our baby needed to have 24/7 supplemental oxygen. He needed oxygen therapy to raise his blood oxygen saturation to maintain healthy homeostasis.
Emotional preparation to look after a child with a disability was easy because we fell in love with the baby instantly and we were eager to support him in whatever way we could. The practicable reality of supporting a child with a disability required a bit more research, but this also entailed little effort; being motivated by our ever-increasing attachment. We wanted to acquire as much knowledge as possible to best support his needs. John had 3 weeks intensive training in hospital remaining at the baby's side. This was not planned training but by watching the medical staff and asking loads of questions a good understanding of the baby's medical needs developed. This learning was built upon by BOC the oxygen cylinder supplier who trained him on how to store and administer oxygen safely. This is not as complex as it might first appear... if you can trust someone to use a B&Q gas cylinder, they should be ok using cylinder oxygen. Ali had administering supplementary oxygen training in hospital prior to the baby's release, instructed by a senior pediatric nurse. Again, this is reasonably straight forward and only took about a couple of hours.
When the baby was discharged from hospital we continued his oxygen therapy at home. We were supported by a community nurse who visited weekly. She was also on call between times if we needed advice. We were also offered 24/7 walk-in support at our local university hospital. This gave us great peace of mind.
A typical day is much akin to caring for any baby once you become acquainted with interpreting the SPO2 monitor readings. Again, this is not as complex as might first appear, as the figures tend to confirm your intuitive observations and knowledge of basic first aid. The baby's health and development improved in an almost daily basis and this fueled confidence in our input. Admittedly the extra tubes and wires presented some challenges for changing clothing and nappies. However, by the end of week 2 we forgot they were there and became quite adept at what we refer to as “Line Dancing” (avoiding stepping on the wires/lines).
Balancing the baby's needs with normal family life did require some readjusting of personal habits, but some of these are overrated anyway. Between the two of us adjustment was reasonably easy. For example, we took turns staying awake at night in case of any emergency. Although we were ready and prepared, thankfully that emergency never materialised. We still enjoyed normal family activities as usual: walks, picnics, beach etc. The only extra allowance we had to make was to leave space in the car for the oxygen cylinders and monitor. As any parent with a baby knows this is not a small challenge, with: pram, baby travel bag, buckets & spades, toys... yet with some careful loading we managed to get it all in to our tiny Vauxhall Miriva. Normal life evolved into a new normal; with a stronger family bond increased by our new bundle of cohesion.
Creating a strong emotional bond for us begins with the ordinary intuitive day to day care we often take for granted or underestimate. For example: being constantly available and having consistent and reliable routines. Soon the child learns that you value them and you can be relied upon and trusted to provide for their needs and always be there for them. To relate this to attachment theory (Bowlby 1907-90, Ainsworth et al 1978) in the child's brain physiological changes and essential neural connections are made which fuel confidence and desire to explore and learn from the world around them safe in the knowledge you have got their back. Phew!... theory aside most parents have these intuitive caring attributes and therefore the ability to heal a wounded child who might otherwise grow in a world: for them, devoid of love and trust.
Caring for a child with a disability can have challenges. Not necessarily because the child is limited in ability, but because society limits inclusion. An example is, we went to a local arcade as a birthday treat for our other child. He disappeared inside at a rapid rate. His spending money disappeared at an even faster rate and it wasn't long before he came back out for a top up. We had to wait outside because only one entrance door was open and it was not wide enough to get the pram through. We asked the manager to open the other door to allow us access but he refused. To conclude the point, many children and adults cope admirably with “disabilities” but may be labelled, stigmatised and disadvantaged because society does not afford them equal opportunity and access.
Resilience is quite possibly uniquely personal. Resolve and commitment can be chipped away at and possibly over time weakened or destroyed. However, when you put love into something it only grows and spreads. So, when the going gets rough and things may not go as planned, we find great solace in shared love and happy memories. We like to capture happy occasions and take loads of photos and retain mementos as a tangible reminder of the good times that we have shared. The sense of achievement we get from caring far outweighs any negative emotions that are usually more transitory.
We have received a great deal of support from Nexus Fostering including professional training and more practicable advice on how to deliver the best possible care to our children. The aspect we find most pleasing about the agency is that they encourage a sense of belonging to a wider family, ready to share the load when necessary. No one that we know does fostering for financial reward or a pat on the back. That said,
Nexus constantly reminds us of our contribution and value.
For us this goes a long way and is a powerful comforter and motivator. It has to be considered though, all the love in the world doesn't pay the bills, and Nexus have made sure we do not get in to financial difficulty in our caring role. Our supervising social worker is a reliable and dependable advocate for us. She visits regularly and has a genuine concern for our children and ourselves.
We work closely with other professions for example the NHS. When our baby came home from hospital, we were allocated a community nurse who was a respiratory specialist. She came to see us on a weekly basis to help us to best support the baby and answer any questions we had. Generally, everybody that we came across in healthcare was committed to delivering best outcomes for our baby. However, the system can be a bit fragmented, as not all departments necessarily share records. This is where we bridged the gap as the thread running through the fabric relaying a more holistic perspective to the pediatrician with overall charge.
If I was asked to give advice to someone considering fostering a child with a disability it would be, to look beyond the disability or at least consider it alongside the child's abilities. Look beyond your own perception of your limit to care.
You will have so many more attributes than you give yourself credit for and you may be just what that child needs.
From our experience of fostering a child with extra needs, the most important lesson learnt is not to underestimate our known personal characteristics or over criticise our unknown ability to care for a disabled child. We initially measured our ability from what we knew and our past experience, therefore denying ourselves that leap of faith. Now looking back we are amazed at what we have achieved in nursing a sick child to physical health and just as important; giving him emotional stability and attachment grounding that is lifelong.
Fostering has given us so much happiness and self-worth. We feel privileged to have been given the opportunity.
In repayment we hope we have given the children in our care love and a sense that they; can trust the world and with or without our help can build happy fulfilled futures for themselves.
Hopefully in the process we can help others to support babies like T. Fostering a child with a disability is not as scary as it first appears. You will be surprised to find skills you didn't even know you had and use existing skills in a new way that may have been undervalued in the past. In our opinion the reward caring for such babies is LIFE CHANGING both for the baby and also for us as the carer. Baby T is thriving, off oxygen and is healthy both emotionally and physically. Despite a rough beginning he has a bright future ahead of him. We feel an immense sense of achievement, and self worth. All said,
T has given us so much more than we could ever give him.
Fostering stories
07 February 2025
