You might find it helpful to seek support from our online Facebook Community. There is a page specifically for Multiples with Special Needs. Our Special Needs Facebook group is a safe place for parents to share, support and meet If you wish to visit this page, click here. The following information has been shared by a parent of special needs multiples:
Tips for Diagnosis
- Have someone with you for meetings in case you need extra support, or help to get home.
- Access grief counselling as soon as possible – face to face is best.
- Request a sit down appointment to be told the diagnosis, and ask for all the ins and outs of it all in more detail
- Your child will still be the same precious wee thing that he/she was the day before his/her diagnosis, as he/she is the day after. Labels can be scary, but I have also found it quite liberating, and I would far rather my son has an understanding of how his brain is wired differently, than continued to be called ‘naughty’. He was simply misunderstood, and life has taken on a very different, and much more positive turn since his diagnosis. People want to understand him now.
- My best sources of support were and are other mums going through the same situation.
- Free marriage/relationship counselling. Why pay a fortune for working through grief?
- Online support groups are amazing.
- It can be a really isolating experience when your child has extra needs. Sometimes friends don’t understand and with all the appointments you can get really busy.
- Join a support group and make sure you take time for yourself regularly.
- It can be really overwhelming and stressful but also it can be really beautiful bonding with your child and seeing the changes in them through therapy.
- Keep other children on the family in the loop, communicating with your partner and taking the time to listen to them.
- If you need help for depression get it, the sooner the better.
- Find your people, you learn pretty quickly who will listen and who won’t. I found a group for parents of children with HIE and they were amazing!
- My multiple birth club were wonderful too.
- Keep pushing and advocating for your child. You are their voice.
- Need to continually talk to partner when facing life with a behaviorally challenged child and other children
- Keep pushing the doctor – I found the squeaky wheel gets more results and help than just waiting for it to happen
Tips for accessing funding:
- There are disability advocates available, and generally free of charge, if you need assistance.
- Most government assistance is means tested which as a single parent servicing an Auckland mortgage I have found exceptionally frustrating. The NASC was very long, and not something I could have done with my son present. (NASCs (Needs Assessment and Service Coordination service) allocate Ministry-funded disability support services and help with accessing other supports. These services are then delivered by their respective service providers.)
- Where possible, have a copy of previously presented information available. It can be frustrating answering the same questions three or four times, with three or four different people, over a short space of time.
- You can seek and get a lot of information from Facebook groups and mums groups
- A disability family advocate would be good. We had to fill in screeds of paperwork over the last eleven years. We have five kids so do find these things time consuming.
Multiples Specific information / support provided by local clubs or Multiples NZ:
- Information about inclusive activities and events
- Our Facebook group
- There may be other parents you can talk to at your local club who are on a similar journey
- Coffee groups with parents with similar special needs
