ASD - Dyspraxia, Aspergers

[MrsB]

Anyone know of any parent support groups of kids with ASD in the Auckland (pref. North Shore) area?

Had DS crying telling me tonight that he "just wants to be normal" and I really didn't know what to say and ended up in tears myself. I really need to find other parents who 'get' what its like to live with a child with these kinds of issues. OH is great but I can't unload on him all the time.

I find it really hard as DS is mainstream schooled and isn't as 'bad' (sorry poor choice of word but I don't know how else to put it) as other kids. However, I still find parenting him a real challenge sometimes and would love to have other people to talk to who really understand how it can be.

Thanks for any assistance,
Mrs. B.

[russetoak]

Hello Mrs B,

Can completely understand where you are coming from. Really sorry don't know of any support groups in Auckland but I do have 1 boy with Dyslexia, Mild Dyspraxia mixed with social and emotional difficulties and another boy with Dyslexia. Feel free to PM me. I have a good listening ear.

[Sam B]

Autism NZ run parent support groups in the Waikato, and they have a branch in Auckland - see their website http://www.autismnz.org.nz/Autism-New-Zealand/Home.php

and this organisation seems to run parent support groups in your area too - http://www.autismhouse.org.nz/child-...providers.html

Hope this helps. I know more about these services in the Waikato, but that's not much help is it?

[norma]

I note that you include dyspraxia in the thread title. The Dyspraxia Support Group of New Zealand might be able to help you: http://www.dyspraxia.org.nz/

Also, there is an excellent centre on North Shore (close to Takapuna Grammar school if you know it) called the Wilson Home Trust (http://www.wilsonhometrust.org.nz/) that is specifically for children with disabilities. I'm sure that if you gave them a call or even called in, they would be able to point you in the direction of some support groups.

[norma]

I forgot to mention on my previous post that the best thing I ever did for my DS was to have him assessed by an educational psychologist at Pro-Ed (http://www.proed.co.nz/) in Mairangi Bay. Up to that point I was constantly frustrated with the school's unwillingness/inability to recognise that there was something a bit different about my son. The assessment at Pro-Ed revealed things we hadn't even considered and it armed me with a report to take back to school with recommendations on how to best help him. Pro-ed will also be able to recommend support groups in the area and therapists if needed. The assessment cost $360 a few years ago, but it was worth every cent IMO.

[123laura]

Hi, my son has Asperger's and I really 'get' it. We homeschool all our kids so I don't have to deal with school etc. which can be very hit and miss. He did two years of state school, loved the first year and his teacher and the teacher for this second year just didn't like him - she was polite etc. but he knew and it really affected his day.

We have always taken the view that nobody is normal, we told him very sideways that he had Asperger's, one friend has fits and that's called epilepsy, another can't hear and that's deafness, another gets awful skin rashes and that's called eczema, mummy has dreadful eyesight and that's called shortsightedness, daddy can't change his mind and that's called stubborness(:-) and the very long list ended with .. and the very unique way that Eimhin thinks is called Asperger's.

We also do a lot of renaming - my brother in law called him odd so we told him that odd meant not ordinary and that's being extraordinary. Normal is boring, and who knows anybody 'normal' anyway. You could get him to google 'people with Asperger's' it's a very long list of very cool people, and these are his peers.

There isn't anything 'wrong' with your child and the time when he is forced into somebody else's mould of normal is limited. I'm sure you are doing a great job with your child, please forget about other people's pettiness.

I hide in the hotpress with a bar of chocolate on bad days, and when it gets too much I go and spend the night gloriously alone in a hotel with a very nice spa. He also has had a very good psychologist who tells it as it is, basically yes,this is too much for one person, but you are what he's got.

If it helps, I wouldn't change him for anything - I value the Asperger's part of him, he is totally unique and brings a whole perspective on life that I would never have known if I didn't have the privilege of being his mum.

[MrsB]

THANK YOU ALL VERY MUCH! As ever the ENZ community offers wonderful support.

123laura - thank you soooo much for sharing your experiences it has really helped me to feel less 'alone'. I love your positive spin on things and will be trying to use that sort of language more around our DS so thanks for that tip. Can I ask how you found the psychologist for your son? I'm concerned that as he hits puberty (not too far away now) that he could slip into depression all too easily especially as I think it runs in my family.

russetoak - thanks for the offer. You may well hear from me some time.

SamB - thanks for pointing out those two websites. I'll look into them.

norma - I have attended some of the Auckland Dyspraxia Support Trust meetings but they tend to have a 'speaker' and not much 'just chatting & sharing', however, I might try again. I'm also aware of the Wilson Trust but always assumed (probably wrongly) that it was for more severely disabled kids -thanks for reminding me about them. We too have had an Educational Psychologist report done by ProEd and it has been useful with DS's school who I have to say have been great. What I'm really looking for now is support for me.

Thanks again,
Mrs. B.

[Hagabel]

Hi there.
I am following your thread, not in NZ so cannot really help much but here if you need to email.

My son,6, has Childhood Apraxia of Speech. We are planning on moving to either AKL or Welly in the near future as soon as hubby gets a job. We actually just flew home yesterday after 3 weeks in NZ on our reccie trip.
Our only concern about moving is the availablilty of services in NZ whilst realising it will not be the same as here.

I hope you do mind me asking but what services does your son get? If you need info or just want to vent etc the US has a great website that people use for apraxia and some dyspraxia and it has an emaal list serve where you can talk to other parents etc. It has really helped me.

www.apraxia-kids.org/

[MrsB]

Hi Hagabel

I remember seeing you around before, happy to hear your move will soon happen - good luck with it!

In terms of what my son 'gets' I think we've been lucky with his school. They were the 1st to highlight the issues and this is what happened:

• Literacy Enrichment programme (run by & provided by the school) for approx. 2 terms
• The school recommended a Behavioural Optometrist who assessed him and gave us a programme to do at home. (Paid for by us)
• The school referred him for RTLB (Resource Teacher: Learning & Behaviour). He got 3 terms input from them (no cost to us).
• The RTLB recommended physio & an OT to go to, she had no space and recommended another OT who had trained with her. Our son was assessed by her and has been having treatment with her (generally 30min per week) since then (over a year). (All paid for by us).
• We asked for a diagnosis from the OT who suggested a pediatrician as OTs are not allowed to give formal diagnosis.
• He was seen by the Pediatrican (BIG cost paid for by us) who verbally told us he has Moderate Dyspraxia, Mild Aspergers and Mild ADD but didn't put those words in his written report. All he would commit to in writing was Mild PDD, Global learning difficulties and DCD/dyspraxia. He also recommended an Educational Psychologist review.
• DS was seen by Ed Psych (BIG cost paid for by us), we got a written report and a follow up meeting with the Ed Psych, us & DS's teacher.

The main reason we pushed for a formal diagnosis was that we wanted to apply for the Child Disability Allowance through WINZ (Work & Income) but we were turned down. We tried to get the decision overturned by going to a Full Medical Review board but were again turned down. They did, however, suggest getting our GP to refer DS to the local District Health Board in the hope of getting some free or subsidised treatment through them. Given that DS already has a good working relationship with an OT we haven't followed this up yet.

This is our experience (so far)!

To be perfectly honest I'm not sure what you would automatically get for your son (if anything) or who you'd need to talk to. Maybe WINZ would be the place to start or his school if he is school aged when you arrive. Sam B might be able to help as she is a SLT.

Thanks for pointing out that website, I'll have a noisy around and all the best for your move.

Cheers,
Mrs. B.