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These tips have been contributed by other parents, carers and professionals. We hope they will give you some ideas to try, but if you need further help why not post a question on our forums or talk to our site experts.
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.
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
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.
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, e.g. with genetic testing or termination, try not to see it as rejection of you or of your child.
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.
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 !
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 some one with special needs.
Communicate!
When it comes to large family celebrations be sensitive to the feelings of the host and discuss with them before hand how it can work to include your family member with special needs. Communicating with family prevents lots of unnecessary emotional upsets. (Try taking an additional carer who is known, to help out.)
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.
Keep it in the family
It might work well to choose some one 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.
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.
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Tips on this internet site have been contributed to Netbuddy and are not the responsibility of Netbuddy. If you have any concerns about the person you are caring for, consult a doctor, therapist, teacher or other qualified professional. Please review the terms of use before using this site. Your use of the site indicates your agreement to be bound by the terms of use.
