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Bringing up children is hard work. It can consume your day and also your life. How do you want to bring them up? And what kind of people do you want them to be? These are questions you live with during the day and go to bed with at night. Raising a disabled child is not much different to that. With the added fight for the daily needs that can be even more consuming mentally and physically.
My son Diamo was born in 2003 severely disabled. This was due to medical negligence. He was quadriplegic, had severe developmental delay, reflux, and very spastic.
I remember not understanding my consultant when he said to me that my child is disabled and may not live to see his first birthday. I remember him saying to me “shit happens”, in the hopes that he would absolve his team from the mistakes that they did when they were meant to care for me and my unborn child, and failed to do so. I won’t go into the details here as it’s not what I want to focus on but it was the start of the fight that I would go through as a mother, and a mother of a child with needs.
Orthotics were part of the care regime almost right from the start. I remember Diamo’s physio fighting tooth and nail to get us referred to orthotic appointments to get the care started. He initially needed Ankle Foot Orthosis to help with his stretches at the age of 2 years. At the age of 3 he was prescribed his back brace. This was after I complained for 1 year about his posture and how he is not straight and needs support. Finally, I was referred to an orthopaedic surgeon who took xrays of his spine only to reveal that Diamo was developing scoliosis.
By the time he was 5, when he got his first standing frame, the significance of those orthopedic braces came to light. I understood then how badly we needed these and how much of our lives will start to revolve around these.
It was difficult to shop for shoes that would fit his AFOs. I would have to buy two pairs with different sizes. One to fit the AFO and the other without. You need shoes that would open wide to be able to slide the foot in with the AFO. Without his back brace it was difficult to sit him on his chair or wheelchair. Therefore, it became difficult to feed him. I learnt that I needed to buy undergarments or vests with no seams, so the back brace wouldn’t mark his body.
This is when we learnt that we cannot move forward or function as a family if we do not have the correct and comfortable bracing. Getting these were a miracle act. I do not remember a time when we would go to a fitting appointment and leave happy.
Hand splint appointments, back brace appointments, AFOs appointments. Not one of these appointments was pleasant. They all took place in different locations, with different medical teams who needed to have the whole history of birth and care explained to them.
Diamo hated all measuring appointments. He did not like the cold rooms, the cold hands touching him, the cold materials put on him and the wait for it to dry. We would do this once or twice every 3 to 4 weeks for about 6 months of the year then wait for him to outgrow them so we can start all over again. The reason we would have so many appointments is because we would have more than one fitting appointment for each brace type and more than often, we would need to go through the whole process from the top!
FUN? I guess not. There was a lot of crying and screaming involved. The worst part is when you are unable to communicate with your child and explain why you are putting him through this horrible experience.
These issues are not unique to myself, as I have learnt over the years, most parents whose children need bracing would go through a similar situation. The severity may differ but the gist of it is the same. Never ending or satisfactory fitting appointments, shoes that don’t fit, back braces that dig into hips and cut skin under the arms.
“He did not like the cold rooms, the cold hands touching him,
the cold materials put on him and the wait for it to dry.”
To top this up, you need these braces to be able to perform the best you can in rehab. Now let’s get something straight. Rehab will not turn the children “normal” – whatever normal means – but it helps alleviate chronic pains that are caused from muscles not functioning as intended because of the brain damage. However, the body learns to compensate, and what rehab tries to do is, help this “compensation” as best as possible and in a way that it shouldn’t affect negatively on other parts of the body.
However, when you are unable to even put your foot into a brace then it makes rehab even more difficult.
Families like mine have learnt to live with such situations. Sometimes we spend the time fighting for better care, sometimes we just choose to ignore the orthotics and take our chances with surgery (which then would need some type of bracing for a period of time). Each family is different, each has their own strengths and weaknesses and would decide what is best for them. Please note I said family and not just the child. Going to and needing an orthotic service is a family’s issue. The whole family would have to go through the service and the whole family would go through the pains and glory of its failure and success. This is because parents would have to take time off work and drag the siblings to these appointments. Sometimes you’d need both sets of parents in the room. Have you ever tried to keep a child still for more than 5 seconds? Try and ask a child who is hyper sensitive not to react to a strangers touch. You’d need both parents to sit on that screaming child whilst the orthotist covers him in plaster and wait for it to dry.
Then all go home completely exhausted awaiting for the next appointment. This was our journey during the 9 years of Diamos life.
“Now let’s get something straight. Rehab will not turn
the children “normal” – whatever normal means – but it helps alleviate
chronic pains that are caused from muscles not functioning
as intended because of the brain damage. “
What have I learnt over the years? Orthotic days are right offs. It didn’t matter what time the appointment was held at, the whole day would be dedicated to it. And when it was over, I was so mentally and physically exhausted that it was not worth planning anything else for that day.
I always made sure that I had enough drinks and snacks and sometimes lunch in my bag during these appointments. I could never plan how long they would take, and when will I need food for myself and for my child to keep going.
Distractions helped. Ipads, music, books. Whatever my child appreciated, I took with me.
I have also learnt that appointments took a very long time to book. I knew how to plan 3 or even 6 months in advance for appointments. For example, when I could see that Diamo would need a new wheelchair and we already established that he is going to need a fitting back brace to be able to sit on this. I would push for a back brace appointment before I got the wheelchair. Once a fitting appointment was booked, I would then arrange for the wheelchair appointment. And if the stars aligned, I would hit all those perfectly.
Speaking to other parents and learning about their experiences helped me. It did not mean that I would do the same thing but it meant that I would know where to look for the best solution for my child, what questions to ask in appointments, etc. One thing I found really useful was going to orthotic trade shows that were paediatric centric, like Kidz to Adultz here in the UK. I would plan my visit and make a list of all the equipment that I want to look at and research. I would come home with lots of brochures, information packs and pamphlets. I would take time to read about the products and the company that creates those products and their services. I would talk this through with Diamo’s physiotherapist and Occupational therapist. And would create a short list of products, for example when I was looking for a seating system, I shortlisted 3 products then made an appointment to check those products with Diamo’s care team. And the winner was the product that fulfilled his core needs but also fitted in our daily life and was easy for me to use.
Living with a child who has any disability is challenging and rewarding. Information is key and you need to educate yourself. Learn about the needs of your child and also very importantly about the services that are provided for your child. Surrounding yourself with a community of parents and caregivers not only helps you care for your child in the best way but also becomes your beacon of hope when you feel lost and alone.
About the author:
Samiya Parvez – my role at Andiamo as the Chief Patient Officer is the culmination of a long journey of lived experience. Andiamo delivers a medically effective orthosis within 2 weeks of a person’s need globally. Using big data, 3D printing and an advanced clinical service that puts the families first.
I am the guardian of the Andiamo Family’s experiences, ensuring that their dignity is protected at all times, that they are understood and their needs are well met whilst delivering an exceptional service. I combine my real-world experiences with what Andiamo technology can deliver to create a truly empathetic service.
I am a parent of two healthy children and an Angel in the sky who is free from his disabilities.
As a parent of a disabled child I overcame lots of challenges. Dealing with prejudice, ignorance and lack of understanding of my child’s needs. I would navigate the system which was trying to deny us our rights to live like any other normal family. In my role now I am strong, resilient, persistent, courageous and patient. I earned these qualities as I fought for my child’s care. I learnt to steer through the system to get him what he needed. I would do my research and find the best solution that would work for him and for us as a family. Now I advocate for all parents with children who have needs.
I am also a strong supporter of the Waltham Forest Parent Forum. We did extensive work in the local community as a group and are making services better for children with disabilities and their families in our area.