The ebbs and flows of special needs parenting
Being a parent is tough. Let's face it; your life has changed dramatically. But what happens when your child has special needs and all the additional challenges that go hand-in-hand with that? As a mom with a son with cerebral palsy, this is my tribute to all parents navigating this journey, and check in to say you're doing a great job!
Photograph: Céline Martin-Pedersen
Text: Lyndsay Jensen
As we celebrate World Cerebral Palsy Day on the 6th of October, I'm reminded of all my son's challenges in his 18 years of life. It's hard when you're trying to be strong for your children every minute of the day. But, the fight is real, and after speaking with other parents who are also struggling, you'll discover that there is common ground. Our cover story in this issue (Page 8-11) highlights an international mom who gives you a peek into life with a special needs daughter. These are the parents you look up to, get advice from, cry and laugh with – they can relate to all you're going through. So, if you're reading this and wonder what life is like behind the special needs curtain, or you've recently just entered this world, here is a small glimpse.
Our children are superheroes
Love and accept your child and any medical diagnosis your child may receive, but don't allow the diagnosis to limit anyone's hopes for them. Remember that your child's journey is their unique adventure.
Celebrating every new milestone and accomplishment is super important! Be sure to tell your child how proud you are of them. Take time to rejoice in their growth and achievements, no matter how small they may seem to outsiders. Remember to count your blessings - every day. When you constantly focus on what you don't have, you can lose sight of what you do have. So instead, try to be positive - gratitude will help carry you through.
My own personal journey to Denmark has not just included fitting in as an international but also navigating the special needs roads with my son. This has been a challenge, especially as not everything is in English, and you're not always aware of the help you can apply for. Due to this, I've made it my mission to give as many parents as much advice as possible – and created a special needs column to inform others of what to expect. Joining Facebook groups, talking to other parents, and doing a lot of research have been beneficial. Unfortunately, we haven't always had the best experiences with the kommune, but I'm learning to fight my way through the system – but it's jadding. However, I'm a forever optimist and hope over time, through organisations like #enmillionstemmer; things will improve for the special needs community of Denmark.
You can feel isolated
Feeling alone is normal. Suddenly, you're uncomfortable to be around. Some friends disappear because the situation is too tough for them to deal with as things get difficult.
While being ignored is unpleasant, being judged can be painful. Disabilities such as Autism, which are not always evident to observers, can incite reactions ranging from curiosity to downright condemnation. This is only exaggerated by other people's unwillingness to learn. As a parent, you have to stand tall. Not everyone has all the correct information about each disability, and they don't know your child enough to be able to understand. It's okay. You know what's right, and other parents are experiencing these same issues. Seek them out. You need friends willing to stick it out when times are tough and with whom you can be yourself.
Are you doing enough?
Deep down, you often wonder, could I do more? Could I try harder? Am I really doing all I can? Sometimes, you have an overpowering feeling that you are failing at being a parent. You don't have enough time or energy to do it all, so the doubt creeps in about your performance as a parent, spouse, or person.
You need to accept that you are human. You need downtime, time to eat, sleep, exercise, relax and nurture your heart. There is a limit to how much one person can do. You give so much for your child - your love runs deep and wide and pushes you to move mountains. You are enough. You're not a failure - you're doing the best you can!
You go through a grieving process – the loss of what could have been for your child. This could hit you at any moment during your life. Unfortunately, men and women grieve completely differently, leading to misunderstandings and arguments. You are each feeling emotions of sadness, anger, frustration, and exhaustion - this can evolve into blaming each other. According to statistics, divorce rates for families with children with disabilities are as high as 85-87%.
The best thing you can do for your child is to take good care of yourself and your marriage. If you can honestly communicate with your partner during difficult times, your relationship has a chance to develop into something even stronger. It is easy to put everything on the back burner when you are so overcome with fighting for your child. However, the comfort and joy of a solid relationship help you conquer almost any obstacles that come your way.
You worry about the future constantly. What will happen to your child when you are not around? You don't know what will happen with your child when they become an adult, and you don't want to even think about it until you have to.
Creating a plan can ease anxiety, and Denmark has many organisations to help with that – I use #cpdanmark to find out about my son's rights. The bottom line is to get expert help so you can relax and feel confident that your child will be in good hands if something happens to you. And the sooner you start figuring it out, the sooner you'll have peace of mind down the road.