I remember the world spinning and blurring when the specialist first diagnosed our baby boy with oculocutaneous albinism.
All I could see were the mounting challenges before him (and before us). All I could hear was the sound of all our dreams for our son crashing down. And all I could remember afterwards was the specialist’s pronouncement that our son would never be able to drive a car.
He was only 11 weeks old yet it seemed his life was already over.
Looking back now, 12 years on, his life most certainly was not over. It’s only just beginning. And now the sky really is the limit for him – he can do anything.
But in those first months following his diagnosis I could not see any hope at all, as I was consumed with despair, confusion, grief, loss and disbelief.
Receiving a diagnosis for your child is a heavy blow, one that can be hard to recover from. However, you do recover. You do move on. And you do build new dreams for your child.
The passing of time and the gaining of experience will help with that process. But there are other ways you can learn to cope after your child receives a special needs diagnosis.
Take the time to accept the diagnosis
You will need time to process your thoughts so you can make informed decisions. It may take weeks or months to fully accept the diagnosis and all it entails. Don’t try to rush this process. If you can, take time out from work. Spend quality one-on-one time with your child. And talk things over with your partner, your family and close friends. It will help.
Work through your feelings – don’t ignore them
Don’t be afraid of your emotions. Every single one of them is natural and you need to experience them all in order to move on. Be open about your feelings with friends and family and don’t be afraid to seek professional help if you feel you’re not coping.
Learn as much as you can about the diagnosis
Knowledge is power. You will feel more in control if you take the time to find out as much as you can about your child’s diagnosis.
You don’t need to be a medical expert but you should understand why your child received the diagnosis; what this means for them long-term; how you can best help them; who can help you; where to find advice and resources and when to seek medical intervention.
Believe in yourself
You may not be an expert in your child’s condition but you ARE an expert in your child. You will always know your child better than any specialist. Use that knowledge to help inform treatment and therapy options. Do not be afraid to speak up or ask questions as your input is just as valid as any specialist.
Know you are not alone
It can be truly isolating to receive a special needs diagnosis for your child. But you are not alone. There are others out there facing similar challenges. Find them – join online forums or face-to-face support groups. Build a support crew around you and share your experiences too. You really are not alone in this.
Above all don’t let a diagnosis change how you love, cherish and protect your child. They are so much more than just a diagnosis. Celebrate their achievements, recognize their strengths, support their efforts and love them fiercely.
In the end that’s the best way to cope after receiving a special needs diagnosis.