When your child is newly diagnosed with a disability, it’s easy to be overwhelmed by the mountain of information to take in. You might feel helpless, confused, upset or angry, and that’s okay. There is no right or wrong way to feel at this time.
We just want you to know that there is support waiting for you, whatever you might need.
When I was 33 weeks pregnant, the doctors noticed that Samuel wasn’t growing. I had him at 37 weeks and he was just so tiny. Very, very little. He was 10 months old when he had his first seizure and not long after that he was diagnosed with epilepsy and cerebral palsy. “It seemed all so sudden. It was like time had frozen for a moment - it’s a couple of words that can change your whole life. But, you know what? It’s not the end of the world. It just means that your life is just going in a different direction. “They said he’d never walk, he’d never talk, he’d never eat. But he does all those things. And there’s no doubt in my mind that CPL made that possible for Samuel.
Look after yourself
In order to do what’s best for your child, you need to look after yourself as well. This means finding time away from your responsibilities at home to relax or do something you enjoy. The simple things can also get away from you, like eating well, getting enough sleep and letting your emotions out. Try not to feel guilty about doing these things, because what you are actually doing is making sure you are healthy and able to look after your child.
You’ll be asked a lot of questions in your initial appointments, but also remember that you have the right to ask questions. If there is something you don’t understand, don’t be afraid to ask for further explanation or clarification.
Reach out for help
It can be daunting figuring out what supports services are out there and how it all works. There are general practitioners, paediatricians, physiotherapists, occupational therapists, speech pathologists, social workers and support workers. You can seek advice from trusted family, friends and doctors, and CPL can help with finding the right support services. Remember, you are the best person to decide what’s best for your child, but you don’t have to do it alone.
We understand you will have a lot of questions, and you might not know where to start.
CPL is here to provide advice, support, and a listening ear. When you’re ready to reach out, we will be here to support you.