Did you know that 17 million people are living in the world with cerebral palsy? That is only one, yes, just one of the many types of disabilities in the world today! Becoming a parent comes with all types of emotions, but nothing prepares you for the highs and lows you will encounter as a parent of a special needs child.
Photographs: World CP Day / Lyndsay Jensen
Text: Lyndsay Jensen
This issue of The International is a personal one for me. I have two incredible sons - one has had a rough start in life and has cerebral palsy. He is one of the 17 million affected in the world today. So why am I mentioning this – well, we celebrate World CP Day on the 6th of October. Raising a child with special needs can add stress to life that most people will not understand. It leaves parents feeling overwhelmed, exhausted and stretched beyond their limit. There are days when feeling helpless is the only thought you have while juggling specialists, pharmacies, physio, equipment needs – and a whole host of other colourful professionals you will meet on this special needs journey. And you do it all for the love of your child. This month, I’ve had the pleasure of meeting Vanessa, our beautiful feature story, another mama bear to a special needs child. Her story is heart warming as she shares her journey about her family on pages 10-13. Yesterday around Denmark, people stood up in their individual kommunes demanding more help for special needs – there is just not enough being done for this community in Denmark, see our article on page 22. With the local elections in November, this is the perfect time to give this community a voice, and we as internationals have a right to vote too –read the article on page 27 to find out more regarding your rights.
I came to Denmark as an international and basically had to understand and battle the system for my son. It’s been a tough fight, not only due to the language barrier but also I’ve found out that Danes don’t fully understand the system either, so I’m not alone! This was why I made it my mission to provide a special needs article in every issue to help understand the system and how you can make it work for you and your child – regardless if you are an international or a Dane.
These reminders are for our special needs parents out there – remember to breathe and be kind to yourself:
Recognise your strength
Every day, you manage situations that other parents would think impossible. Take care of yourself. Take the time to recuperate and relax so you can maintain your energy. Think of your energy as a jug of water. If you constantly pour out the water (your energy) and never refill the jug, you will have nothing to give at the end of the day. Maintaining a healthy mind and spirit is a prerequisite to effective parenting.
Emotional support is crucial
Surround yourself with people who provide the positive energy you need. When facing severe emotional difficulties, consider looking for a support group of parents with special needs children. Well-meaning parents with ‘normal’ developing children may not be able to provide the kind of support you need, or they might find the conversation awkward because they cannot offer practical help. However, having a dedicated community of parents with similar struggles will make daily life more manageable – and they just ‘get you’.
Don’t lose you
Find time for personal peace and solitude. Connect with others who can relate to your journey. Accept help from friends and family by letting others know what you need – don’t be shy to speak up, and go out and have a little fun now and again.
Listen to your gut
You are your child’s best advocate because you know your child. Don’t be afraid to ask questions, get multiple opinions and ask your doctor about the research. Research your child’s condition by reading journals, researching and listening to other parents of special needs children. Doctors, teachers and therapists are all fantastic resources, but if you don’t feel like you’re being heard or that your child’s needs are not being met, it’s reasonable to get a second opinion.
Celebrate the little things
Celebrate those accomplishments that seem small to others but are huge for your child. Kids develop differently. Some skills they may grasp, and others they may never master. The first step on their own, a word, a sentence, a smile, a hug — whatever that milestone is, share it with those who love you and your child.
Protect your inner parent
You are a chemist, nurse, doctor, physio, and kommune negotiator. But you are first and foremost a parent. So while everything on your calendar is important, it’s necessary to make room to play, laugh, be silly and enjoy your kids – you’re still a mom. Read, snuggle and engage with them in their world. Take time to appreciate your children and love them as individuals. I always say that his disability does not define Bjørn – and when that cheeky face grins and me, he is my hero, and his disability becomes a secondary thing, I just see him.