Just Diagnosed – Practical Tips for Families
If you have recently received a diagnosis or perhaps you are in the process of getting a diagnosis, you may be wondering which way is up. We know because we’ve been there too and remember what a frightening, exhausting and confusing time it can be.
So we have asked other parents, who have also been where you are, to share their top tips. The things they wish they had known at the beginning.
We have split the tips into three categories. Emotional Tips for Families. Practical Tips for Families. Tips for Friends and Family.
Practical Tips for Families
- It’s ok to say I don’t understand, please help me to understand what’s happening
- Buy two notebooks. One to write down practical everyday things and one to write down how you feel.
- Write everything down. Take photos of documents. Record what you can. Having evidence is such a major part of survival or triumph !
- Keep a daily diary – when you start meds, symptoms, behaviour, filled forms in, sent forms off, keep emails, etc
- Keep a book to take to meetings, date and attendance record. Take notes, write who said what, actions agreed – who and when they said they would do it by.
- Take someone to meetings with you to make notes so you are not constantly trying to remember who said what, when and where.
- Read up on educational rights (or ask a friend to)
- Compile a profile of your child that you can hand out to every professional you meet that hasn’t read their notes. Have a look at our One Page Profile series for some ideas.
- Make a contact list for the fridge. Name, number, email and what they do for you or your child.
- Google everything if you are the kind of person who needs knowledge to feel in control and powerful
- Do not google anything if you are feeling fragile and not sure you can handle reading something negative. Ask a friend.
- Knowledge is power, go on as many courses as possible, find the groups on Facebook or locally. We have a group you can join where you can ask other parents for tips or for ideas on other groups dealing with your specific need.
Next week, we will be sharing tips for families and friends. Often they ask what they can do to help and you may not even know.
Don’t forget to subscribe for updates so you can pass these invaluable tips on or use them with your own family and friends.