My name is Naiya, and I was 22 when I had my only child who is now six years old. We didn’t leave the hospital until he was a month old, and after three months were told he was showing signs of cerebral palsy, due to a complicated birth.
We had no clue what cerebral palsy was and our hearts felt heavy. We went through a range of emotions, from shock to anger, love, and despair.
Based on our experiences of raising a child with a disability, I wanted to give you a few pointers I wish I’d had when I received my Son’s diagnosis – a time when I felt confused, lost, and lonely.
Acceptance takes time
Accepting your child’s diagnosis is easier said than done. It took me nearly six years to accept that my son had a disability. During this period, I learned that the earlier you acknowledge and accept this, the sooner you get to a mental state that best enables you to support your child.
Information is power
Although fear creeps up on us when we receive a diagnosis, the more informed we are the better prepared we are. From knowing what to ask at appointments, to seeking appropriate treatments, being knowledgable means you can begin to understand the diagnosis. It also helps prevent doctors from withholding information that they assume you can’t understand, or you’re not ready to hear.
Prepare for your child’s appointments
At the beginning of my journey with my son, I found it very hard to cope with the information we received at appointments. I didn’t know what I wanted from the appointments and felt like the medical team was in control.
I realised the difference between the appointments at the beginning of receiving my son’s diagnosis to now where I am equipped with more knowledge. The difference is that now I am confident I know what to ask for in his appointments and I am not lost when the doctor asks me questions.
My advice would be to prepare questions that you would like to cover in the appointments and, most importantly, if you are unsure of something the doctor said, ask for it to be explained so that you can understand better.
If English is not your first language you can either bring a family member to translate or ask for one to accompany you through the appointment. Walking away from the appointment feeling confident that your child has received the best possible outcome is how you want to feel.
Keeping track of appointments and waiting list times means your child won’t get lost – and giving the clinic a follow-up call can be very helpful.
Don’t compare your child to others
Now that we have covered dealing with professionals, I want to come back to us as parents. I want to talk about comparing our child to other children which is something I am guilty of.
Through our process of acceptance, you will find that you will compare your special needs child ability to an abled child. This only brings us and our child more heartache. This hinders us from seeing the progress that our child is making no matter how small it is. Your child can sense your feelings and it make them worry too. The minute you stop comparing you will be happier appreciating your child’s progression.
Get support from others who have been there or who understand
Support from others is key, especially if you do not have families with similar needs around you. From family support groups, to counselling through the NHS or privately funded, the power of talking to others in a non-judgemental space is so important.
Seeking support for yourself is not a sign of defeat or failure, but just need a listening ear to help have a clear mindset to continue your journey.
You will have good days and bad
There will be low days, days when you wonder, ‘why me?’ Days when you think, ‘how do I go on?’ When these days do come, don’t take them as a day of defeat. In order to have better days you need to have bad days too. Days where you don’t feel like talking to anyone or just simply crying. I have those days too.
The only thing I try not to do is cry in front of my son. I don’t want him to worry and wonder why I am crying so I do when I am in the shower or when he is asleep. Once I have my cry, I pick myself up again and continue on my journey. It’s better out than in.
Live in the moment
I used to wonder how I will manage when my son is older. ‘What would life be like?’ But then I realised that dwelling on the future does no good for the present, as I can’t and don’t know what the future will be like.
I love to plan, which includes thinking of what the plan will be and how it will be executed, including if something should go wrong. However, through my experience with my son I realised that as much as I love to plan, I can’t. No two days are the same – and you can’t plan for everything. Taking things day by day or week by week helps to stop worrying about the future. I don’t know what my Son’s abilities will be like in the future, and so I ensure I am doing the utmost I can for now.
Hopefully, my tips will help guide you into some though as to how you shape your journey with a special needs child. The road may seem difficult and rough, but with it comes amazing days and memories that you can look back on celebrate.
My tips are not necessarily tools that you will use today or tomorrow but most importantly when the time is right for you and only you. We are our children’s voice and through us they will get what they need. They are relying on us to ensure they live a healthy and happy life as possible.
You’ve got this.
Naiya is mum to a six-year-old boy with cerebral palsy and a blogger at Keeping up With Palsy. You can read more on her blog, or follow her on Instagram and Facebook. Friendili is a new, free app launching in the UK and Ireland for parents and families who are going through health and disability journeys. You can find out more about it here, or join the waitlist and be one of the first to try it out here.