10 things parents wish they’d known at the start of their journey
Parents and carers share what they wish they had known when their child with complex needs was born, diagnosed or first discharged from hospital.
Starting your journey with a child who has serious health needs can feel overwhelming, and many parents struggle to know where to go for advice. We asked parents in the WellChild Family Tree to share what they wish they had known at the start of their journey in their own words. We hope the advice they give below will help new parents through what can be a difficult time.
1. Be kind to yourself . You don’t have to be superhuman and do it all. You will have bad days, but they won’t last forever.
"Hang on in there. Allow yourself to be sad but remember things will settle and get easier to manage and you’ll eventually come to a new norm that you’ll embrace"
“You will see, learn, change, grow, so much more than you ever, ever imagined. And that’s great. But there are difficult days and rubbish days, and it’s ok not to be ok”
"People will tell you how they don’t know how you do it or how amazing you must be. It’s ok to feel like you aren’t amazing or that you don’t know how you do it to. It’s ok to feel like you don’t have it all together most of us ‘experienced’ parents don’t either, we just look like we do”
2. Asking for help does not mean you are failing.
“Accept help where you can, and remember you are human, you need to look after yourself too”
“You are never alone. There will always be someone there to listen, talking about things always helps. No question is a silly question”
3. Find support from both friends and other like minded parents who are there to talk to.
“Find your ‘people’, I have a small handful of amazing friends who truly get it and are always there for a chat/rant. They truly understand how hard life can be at times, they get it that sometimes it takes ages to respond to a message and they check in without waiting for a text first. Their friendship is valued more than I think they will ever realise. ❤️”
“Finding your ‘village’ both of other special parents who ‘get it’ but also other friends who will support you along the way”
4. Many parents have found the WellChild Family Tree and other support groups helpful.
“Facebook and social media is an amazing place to find your support”
“Ask other parents and join groups, as professionals never tell you what a parent with lived experience can”
5. Enjoy family life.
“Go out and enjoy life with your child, do not stay at home locked up believing there is no where suitable to take them, go for walks, go shopping, go for something to eat let your child be part of the community 🙂 (obviously when this pandemic is over and it is safe for you to do so)”
“Try not to forget other brothers and sisters in all the turmoil of having a not so well child”
6. Manage the expectations of your family and friends.
“Don't be afraid to tell people what you need (and don't need!) For a good while when my son was in hospital I felt like I almost had to play host to family and friends when they came to visit, when sometimes I just didn't want to talk or answer endless questions”
“Pick a person to give messages to so they can deliver news or updates to family and friends. I found repeating the same news countless times to everyone exhausting”
7. Put everything in writing and keep notes when meeting health professionals. This will help you keep track of everything and serve as a written record which may become useful in the future.
“Keep hold of every letter, report. Communicate via email as much as possible. Trust me, you will thank me when you come to do your DLA! (Disability Living Allowance)”
“Make a file with all the information needed about your child and keep it up to date. This way if anything happens and this file is on your child anyone who reads it can see a history of your child's needs, meds, operations, professional bodies involved etc all in one place”
8. Treat the professionals working with your child with respect.
“Be kind to every professional you may meet. They’ll remember you for it because often they get given a bit of a hard time”
“Treat the professionals well. It's so good to have relationships with people who are a constant in your child's life”
9. Trust your instincts.
“Believe in yourself - you know your child better than any professional. You are their best advocate. No question is a silly question. Listen to any hunches you may get because you’ll almost certainly be right"
“Never be afraid to be ‘that parent’. You know your child better than anybody and are their best advocate. We had a fabulous consultant who told me to never stop being my girl’s fiercest advocate. Always be polite, but assertive, and listen to your parental instinct; it is very rarely wrong”
10. Have someone with you at appointments where possible.
“Always take someone with you to appointment if you stressed or scared or anything having an extra set of ears and a level head is better then missing something important”
"If you have a partner, make sure they are not forgotten. Dad's especially seem to be left out as professionals automatically defer to Mum”