New Zealand Multiple Birth Association

Special Needs 

 

It can take a very long time to get a final diagnosis, especially with conditions such as HIE.  Medical professionals can focus more on the facts and figures, than what it can actually mean for the family. In surveying our members, there appeared to be an even balance between having received adequate information at the time of diagnosis, and not enough information. With HIE, while usually diagnosed at birth, things can change over time. There are also those times where the disability or condition is extremely rare and there just isn’t the information or experiences to share here in New Zealand. Google continues to be a key tool to understanding a diagnosis, as are other parent’s experiences. What appears to be missing, is one place for information on support and accessing that support for the specific special need.

 

Support services include:

  • Autism NZ - www.autismnz.org.nz

  • Disability Connect - disabilityconnect.org.nz

  • Taikura Trust - www.taikura.org.nz

  • Children’s Autism Foundation - www.autism.org.nz

  • Parent To Parent - parent2parent.org.nz

  • Hospital outpatients team (pediatrician, dietician, speech language therapist, occupational therapist)

  • Explore - www.healthcarenz.co.nz/explore-specialist-advice

  • Ministry of Education - www.education.govt.nz/quick-links/special-education

  • Enable - enable.co.nz

 

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

 

FORMAL EDUCATION

There are some amazing formal education options available for families with special needs. One question I know comes up regularly is having twins or triplets at different schools. Simply because not all mainstream schools have a special needs satellite classroom. Fortunately, I had a Special Education Teacher available to me to explain all the different schooling options, and she did note that she had taught a few multiples in her time. She also has two children with dyslexia, so was able to update me on the various funding options and challenges with having special needs kids in mainstream schools. Her one tip was to keep pushing until you get the support you need for your children. The ‘other’ listed below, includes a child on a waitlist for Kindergarten (and a teacher aide), and a child in a non-ORRS funded, partially integrated satellite classroom at a mainstream school (ORRS stands for Ongoing and Reviewable Resourcing Scheme and is additional to the teacher funding and operational grants that are paid to schools. Students eligible for ORRS support generate funding at two levels – high and very high needs.)

 

Tips for Starting formal education

  • Keep talking to the teachers regarding how to engage and help your child.

  • It was straightforward for us as our child is severe enough to be schooled in a special needs school.

  • Know what your rights are and stand up to make sure your child/ren receive them in an inclusive way.

  • It IS a very difficult road with lots of hurdles and minimal funding that is extremely challenging to get.

 

FUNDING

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.

 

What multiples-specific information or support could Multiples Clubs or the Multiples NZ provide you to support you and your children?

  • Information about inclusive activities and events.

  • A comprehensive list of the support services available for families with special needs children. I didn't get any and had to look for them myself.

  • The Facebook group is a really valuable resource

  • Booklets about what to expect when given a diagnosis would help. As would a collection of who to contact for different types of assistance.

  • For long term diagnoses it would be great to provide hospital packs for 'frequent flyer' multiples with something to do like colouring books etc

  • Anything about ADHD! ADHD groups.

  • There were a few other parents I could talk to at the Multiple Birth club who were (and are!) on the same journey as us!

  • Coffee groups with parents with similar special needs

 

You might find it helpful to seek support from our online Facebook Community.  There is a page specifically for Multiples with Special Needs.  If you wish to visit this page click here

 

I found this quote online, and while it was specifically written with special needs in mind, it seems fairly fitting for all our families growing and parenting twins, triplets, quads and more and a great way to end the article:

“Hang on tight and get ready for the wildest, saddest, happiest, most challenging and most rewarding ride of your life!”~ Sylvia Phillips (UK Author of teaching manual specific to Dyslexia)