Be realistic

There is no point in forcing a 'family' event if it's all going to end in tears. Be sensitive to the situation.

Keep it in the family

It might work well to choose someone from your family to be the person’s guardian in case of death. You should ensure that person is familiar and keep them up to date with needs.

Do they know?

If a family member is upsetting you try to talk to them about what’s going on, don’t let things fester. They may well be completely unaware.

Communicate!

When it comes to large family celebrations be sensitive to the feelings of the host and discuss with them before how it can work to include your family member with special needs. Communicating with family prevents lots of unnecessary emotional upsets.

Understanding them

Don’t take things personally, family really don’t understand how hard it is or what you go through on a daily basis caring for someone with special needs.

Try asking

Don’t hold back from asking for help. Often family want to help but feel afraid to ask. You may find they are pleased to help so long as you don’t ask too much!

No matter what people say

I have often been criticised as being neurotic. You must be strong and continue to support and protect your child needs, despite what other people say.

Genetics

If there are genetic implications for your siblings or cousins it is only fair to be open about these, perhaps in writing if you find that easier or want them to think about the issues carefully. It would be kind to take the initiative in explaining the person's condition to new partners or in-laws too, they may have questions but be afraid of upsetting you. If in the light of that information they make decisions different from yours, such as with genetic testing or termination, try not to see it as rejection of you or of your child.

Equal respect

We keep our extended family in the loop and encourage them to love Wills for himself and to view him as an equally respected member of the family.

Comfort zone

We don’t ever leave Katie with anyone who is not comfortable looking after her. Be sure you are confident whoever you are leaving can cope and above all, keep your sense of humour! Be patient and explain what needs to be done in every situation.

Focus on what you have achieved

Don't expect your extended family to understand (if they do it's a bonus), and expect older people to say things like: "Oh, they will grow out of it" "Never had it in my day" and "Isn't it a shame." Move past these comments quickly. They are not helpful. Focus on what you have achieved this week and celebrate it with people who support you and understand. 

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Using these tips

These tips have been contributed by members of our online community. We hope they will give you some ideas to try, but if you need further help why not post a question to the community or talk to one of our community advisors. If you have any concerns about your health or the wellbeing of someone you are caring for, please consult a doctor or qualified professional.