OHbaby! Forums : Parenting a child with special needs https://www.ohbaby.co.nz/forum/ Copyright (c) 2006-2013 Web Wiz Forums - All Rights Reserved. Wed, 29 Apr 2026 12:53:50 +0000 Wed, 11 Aug 2021 20:51:13 +0000 http://blogs.law.harvard.edu/tech/rss Web Wiz Forums 12.05 720 https://www.ohbaby.co.nz/forum/RSS_topic_feed.asp?FID=28 <![CDATA[OHbaby! Forums]]> https://www.ohbaby.co.nz/forum/forum_images/web_wiz_forums.png https://www.ohbaby.co.nz/forum/ <![CDATA[Parenting a child with special needs : Buy a driver's license online,]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=53997&PID=5918868&title=buy-a-drivers-license-online#5918868 Author: Guests
Subject: Buy a driver's license online,
Posted: 11 August 2021 at 8:51pm

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Subject: Parents of kiddies with CP/developmental
Posted: 19 July 2021 at 5:00am

CP development is not an easy job and we have to give our time and energy to it. Also, we need to purchase online assignment help uk to manage our home tasks easily. If one mistake happens we can lose all our work. So I think it is better to hire a professional for this.]]> Mon, 19 Jul 2021 05:00:11 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=39236&PID=5916822&title=parents-of-kiddies-with-cp-developmental#5916822 <![CDATA[Parenting a child with special needs : Köp äkta körkort online,]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=51354&PID=5915564&title=kp-kta-krkort-online#5915564 Author: Guests
Subject: Köp äkta körkort online,
Posted: 03 July 2021 at 11:39am

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Köp högt]]> Sat, 03 Jul 2021 11:39:42 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=51354&PID=5915564&title=kp-kta-krkort-online#5915564 <![CDATA[Parenting a child with special needs : Köp äkta körkort((https://buymyglobaldocs.com]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=51101&PID=5915238&title=kp-kta-krkorthttps-buymyglobaldocs-com#5915238 Author: Guests
Subject: Köp äkta körkort((https://buymyglobaldocs.com
Posted: 28 June 2021 at 11:22am

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Köp högt]]> Mon, 28 Jun 2021 11:22:13 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=51101&PID=5915238&title=kp-kta-krkorthttps-buymyglobaldocs-com#5915238 <![CDATA[Parenting a child with special needs : SELL CVV/BANK LOGIN/DUMPS Track 1&2/TRANSFER WU/PA]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=50742&PID=5914733&title=sell-cvv-bank-login-dumps-track-12-transfer-wu-pa#5914733 Author: Guests
Subject: SELL CVV/BANK LOGIN/DUMPS Track 1&2/TRANSFER WU/PA
Posted: 23 June 2021 at 10:19am

Selling 100% Good Cc Ccv,Fullz,dumps+pin,Bank Logs,Wu trF ====ICQ#: 55-96-56

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Format is:
|Card Number|Exp. Date|Cc/Cc|First Name|Last Name|Street|City|State|Zip Code|Country|Phone|Type Of Card|Bank Name|
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+++++++++++++++++++++++++++++ MY CARDS PRICE LIST ++++++++++++++++++++++++++++++





**********clone card prices LIST************

$250-------$3000 ---balance
$350-------$4000
$450-------$5000
$600-------$7000
$700-------$8000
$800-------$10000
$900-------$12000
$1000------$15000


---- YESCARDS pour DAB et CARTE Cloné DIRECTEMENT UTILISABLE ------------



PRIX POUR LES YESCARDS

Platinium visa - 350 euro ---- plafond 10000 euros

Platinium Visa - 450 euros ----> plafond 20000 euros
Platinium Mastercard - 500 euros ----> plafond 22500 euros

Platinium Visa - 600 euros ----> 27000 euros
Platinium Mastercard - 650 euros ---> 29000 euros

Infinity Visa - 750 euros ----> plafond 35000 euros
Infinity Mastercard - 850 euros ----> plafond 45000 euros

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===> List Price for fresh Credit Card (CC,CCV,Ccs)
- US (visa/master) = 35$ per 1
- US (Amex,Dis) = 65$ per 1
- US Bin = 15$, US Dob = 65$
- US fullz info = 65$ per 1
---------------------
- UK (visa/master) = 50$ per 1
- UK (Amex,Dis) = 60$ per 1
- UK Bin = 30$, UK Dob = 65$
- UK fullz info = 85$ per 1
---------------------
- CA (visa/master) = 50$ per 1
- CA (Amex,Dis) = 50$ per 1
- CA Bin = 25$, CA Dob = 55$
- CA fullz info = 65$ per 1
---------------------
- AU (visa/master) = 65$
- AU (Amex,Dis) = 65$ per 1
- AU Bin = 30$, AU Dob = 65$
- AU fullz info = 65$ per 1
---------------------
- EU (Visa,Master) = 65$ per 1
- EU (Amex,Dis) = 65$ per 1
- EU Bin = 35$, AU Dob = 65$
- EU fullz info = 60$ per 1






Others Country:
- Italy = 65$ per 1 (fullz info = 65$)
- Spain = 65$ per 1 (fullz info = 65$)
- Denmark = 65$ per 1 (fullz info = 65$)
- Sweden = 65$ per 1 (fullz info = 65$)
- France = 65$ per 1 (fullz info = 65$)
- Germany = 65$ per 1 (fullz info = 65$)
- Ireland = 65$ per 1 (fullz info = 65$)
- Mexico = 65$ per 1 (fullz info = 65$)
- Asia = 85$ per 1 (fullz info = 65$)
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* SPECIAL CARD (With DOB + Bin, Full Info) good bin, high balance:
30 CC Dob + Bin US = 450$
30 CC Dob + Bin UK = 500$
20 CC Dob + Bin CA = 500$
20 CC Dob + Bin AU = 500$
20 CC Dob + Bin EU = 600$





* SSN / DOB:
150$ - 200$ = 400 info SSN DOB (Name + Adresss + City + State + Fone + SSN + DOB):
|178516|301-52-7518|08/29/1950|Edwin|R|White|B|M|5|11|170|BLK|RU186513|2000| OH|R|937-275-8536|2000 Benson Dr|Dayton|OH|45406|
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===> Price for track1&2:
** Usa :101
- Visa Classic, MasterCard Standart =45$
- Visa Gold|Platinum|Business, MasterCard Gold|Platinum = 50$
- American Express = $50 (Without SID)
- Discover = $50

** Canada: 101 201
- Visa Classic, MasterCard Standart = 45$
- Visa Gold|Platinum|Business, MasterCard Gold|Platinum = 50$

** EU, UK: 101 201
- Classic|Standart = 60$
- Gold|Platinum = 70$
- Business|Signature|Purchase|Corporate|World = 100$

** ASIA/AUSTRALIA/Exotic: 101 201 121
- MasterCard| Visa Classic = $50
- Visa Gold|Platinum|Corporate|Signature|Business = $70

** Other countries: 101 201
- MasterCard| Visa Classic = 50$
- Visa Gold|Platinum|Corporate|Signature|Business = 70$






===> Price for track and Track 1 & 2(With/without Pin):
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- Tracks 1&2 US = 100$/1, No Pin 50$
- Tracks 1&2 UK = 110$/1, No Pin 60$
- Tracks 1&2 EU = 120$/1, No Pin 80$
- Tracks 1&2 AU = 120$/1, No Pin 80$
- Tracks 1&2 CA = 120$/1, No Pin 80$




Demo:
Track 1: B4867967032437166^AVALLONE/SONJA^13011010000000472000000
Track 2: 4867967032437166=13011010000047200000|United States|JPMorgan Chase Bank N.A.|Visa|Platinum|101|Tr1+Tr2|
Pin code: 2269
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(EU,UK,Asia,Canada,US,France,Germany,Italy,Nigeria ,.. African)
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$300 for MTCN $3000 (get MTCN vs Sender's details)
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* Selling Email and pass - Email leads:
1000 Email and pass of (US,UK,CA,EU,AU,..) and many other countries = 50$
5000 (US,UK,AU), World(Mixed), Jobseeker, AOL email leads = 50$
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Szerezzen kiváló minőségű eredeti és hamis útleveleket, vezetői engedélyeket, vízumokat és ausztriai igazolványokat
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Szerezzen kiváló minőségű eredeti és hamis útleveleket, vezetői engedélyeket, Olaszország vízumát és személyazonosító okmányait.]]> Sat, 24 Apr 2021 07:23:35 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=47810&PID=5911024&title=vsroljon-regisztrlt-vezet337i-engedlyt-onli#5911024 <![CDATA[Parenting a child with special needs : Having a 2nd kid when 1st kid has special needs]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=47345&PID=5909611&title=having-a-2nd-kid-when-1st-kid-has-special-needs#5909611 Author: lebi265346
Subject: Having a 2nd kid when 1st kid has special needs
Posted: 13 October 2020 at 12:43pm

My daughter (1st kid) was born in March and has Turner Syndrome. We've spent 3 of the last almost 6 months in the hospital, and she's had surgery to fix her aortic coarctation and 2 kidney surgeries for urethral reimplantation, vesicostomy and a urethral stent. Plus 7 bladder infections that almost all needed IV antibiotics. We're now looking at another surgery in a couple weeks for a ureterostomy and a full reconstruction at 18-24 months with a mitrofanoff. All that to say that it's been a rough few months for first time parents.

For context, Turners is different for every girl. We already know she has heart and kidney abnormalities, but in the coming years she could have more physical or developmental challenges, or she could have nothing. Beyond all the early intervention can do, it's a waiting game.

My wife still wants to have another kid in the next few years. We always planned on 2-3 kids. With all the complications we have had and the ones still coming, I can't even think about another kid. I love my daughter with all my heart, and I can't picture focusing on her health challenges while bringing another baby into the picture.

So my questions to the group:

To parents who had second kids following a child with special needs, what has your experience been like?

To parents who stopped at one, how did you decide or have that conversation?https://9apps.ooo/

Edited by lebi265346 - 15 October 2020 at 8:53am]]> Tue, 13 Oct 2020 12:43:38 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=47345&PID=5909611&title=having-a-2nd-kid-when-1st-kid-has-special-needs#5909611 <![CDATA[Parenting a child with special needs : Daycare options]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=47245&PID=5909375&title=daycare-options#5909375 Author: jakie262618
Subject: Daycare options
Posted: 14 August 2020 at 6:02am

I have a 9 year old daughter with Angelman's Syndrome. Nonverbal, not potty trained and needs near constant supervision. Currently my mother watches her during the day while my wife and I both work. It is putting a strain on things now that there hasn't been school for months and its time we find some other options. Had anyone else had any luck finding someone to watch their older special needs child? Where do I even start looking?

Thanks.
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Edited by jakie262618 - 15 August 2020 at 10:25am]]> Fri, 14 Aug 2020 06:02:40 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=47245&PID=5909375&title=daycare-options#5909375 <![CDATA[Parenting a child with special needs : Child Care Centre in Papakura]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=46970&PID=5908517&title=child-care-centre-in-papakura#5908517 Author: Sophie12
Subject: Child Care Centre in Papakura
Posted: 31 December 2019 at 9:50am

Are you looking for a daycare or Child Care Centre in Papakura that provides secure, homely and age suitable atmosphere to your baby? Then Creative Garden Early Learning Centre in Papakura is the best option for you. For more details, you can visit at "166 Old Wairoa Road, Papakura, Auckland 2110"]]> Tue, 31 Dec 2019 09:50:22 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=46970&PID=5908517&title=child-care-centre-in-papakura#5908517 <![CDATA[Parenting a child with special needs : Attachment Disorder]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43278&PID=5905298&title=attachment-disorder#5905298 Author: Tania223073
Subject: Attachment Disorder
Posted: 29 May 2017 at 10:22pm

Hi, please tell me you 2 still exist in this forum!!! I need help with my sons attachment disorder. He's 9 and I desperately need to speak with people who understand what we go through!!]]> Mon, 29 May 2017 22:22:06 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43278&PID=5905298&title=attachment-disorder#5905298 <![CDATA[Parenting a child with special needs : Club Foot]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=23335&PID=5905210&title=club-foot#5905210 Author: Thomas Sharp
Subject: Club Foot
Posted: 16 May 2017 at 5:27pm

In clubfoot, the tendons on the inside of the leg are shortened, the bones have an unusual shape, and the Achilles tendon is tightened. If left untreated, the person may appear to walk on their ankles or the sides of their feet.
In an infant born with clubfoot: the top of the foot twists downwards and inwards
the arch is more pronounced and the heel turns inward
in severe cases, the foot may look as if it is upside-down
the calf muscles tend to be underdeveloped
if only one foot is affected, it is usually slightly shorter than the other, especially at the heel A person with a clubfoot does not usually feel discomfort or pain when walking.
A health care professional normally notices a clubfoot when a baby is born. Sometimes it can be detected before birth.
Most children will have only a clubfoot and no other condition, but sometimes clubfoot occurs with other problems, such as spina bifida.]]> Tue, 16 May 2017 17:27:16 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=23335&PID=5905210&title=club-foot#5905210 <![CDATA[Parenting a child with special needs : Cleft bubbas?]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=41003&PID=5905199&title=cleft-bubbas#5905199 Author: Jemesque
Subject: Cleft bubbas?
Posted: 15 May 2017 at 5:54pm

BeccaBecca - https://www.facebook.com/groups/faceitcleftnz/ this is the link to the New Zealand cleft support group. Really great group of mums on there!

I'm part of one that is worldwide but most members are American, called Cleft Mommies. I believe there are some people on there who have experience with breastfeeding their clefties.

My boy has/had a bilateral cleft lip & palate. He is now 1 and is having his palate repaired in September, his lip was done when he was 6 months old. Dont know what hospital you will be based in but we are in Dunedin, so if you have any questions just message me :)]]> Mon, 15 May 2017 17:54:44 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=41003&PID=5905199&title=cleft-bubbas#5905199 <![CDATA[Parenting a child with special needs : Duane syndrome]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44180&PID=5904292&title=duane-syndrome#5904292 Author: JoAbbott221580
Subject: Duane syndrome
Posted: 09 April 2017 at 1:27pm

Hi

I have just seen this a couple of years after the posting. We are in NZ. My son who has just turned ten has Duane's type 1. It doesn't seem to have affected his school work or sports much at all and his good eye and brain seem to have compensated/adapted to things. Lighting in classroom and poor curtains was a problem to him with glare and the usual problems of inadequate funding to address this. He does struggle with balance and heights but mostly through communication with the school activities where these things come up (which isn't often) can be avoided/managed. The other areas he finds difficult are things like puzzles and lego where there are lots of small pieces.

In terms of support, he was signed up to BLENNZ (blind and low vision) when he started school. This was on the strength of an ophthamologist report. He has had a BLENNZ worker until recently - a specialist teacher comes and observes and supports. He has been discharged however as the reports have indicated he is coping fine.

I don't know if this made any difference to our son's development but when he younger but we spent quite a bit of time on co-ordination things like throwing and catching balls.

I hope that this is helpful and that things are going well for your daughter. If she is not on the BLENNZ register when she starts school it would be worth pursuing this.




]]> Sun, 09 Apr 2017 13:27:39 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44180&PID=5904292&title=duane-syndrome#5904292 <![CDATA[Parenting a child with special needs : Help with delays - ASD?]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=45418&PID=5902588&title=help-with-delays-asd#5902588 Author: Dee218850
Subject: Help with delays - ASD?
Posted: 03 January 2017 at 5:53am

My sweet 4 year old has some delays with social skills and speech development.

Anyone with experience accessing ministry-funded therapies for their child on the spectrum? I suspect that's what it would fall under.

Therapies in the Auckland area in particular would be helpful.

So far, all I've been able to find online is that children are eligible for 1 hour per week with a speech therapist and I've heard from a friend that her 4 year old got a group session once per week with a speech therapist.

Surely there's gotta be more available than that? Please help.]]> Tue, 03 Jan 2017 05:53:21 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=45418&PID=5902588&title=help-with-delays-asd#5902588 <![CDATA[Parenting a child with special needs : 2yr old diagnosed with benign brain tumour]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44802&PID=5892508&title=2yr-old-diagnosed-with-benign-brain-tumour#5892508 Author: poppy101
Subject: 2yr old diagnosed with benign brain tumour
Posted: 31 December 2015 at 10:08am

Hi there I have just seen this post and wanting to check in on you. So sorry your wee girl is going through this, I hope you had a successful outcome.
I lost my baby girl recently to a very rare tumor. If you ever want to chat just message me x]]> Thu, 31 Dec 2015 10:08:52 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44802&PID=5892508&title=2yr-old-diagnosed-with-benign-brain-tumour#5892508 <![CDATA[Parenting a child with special needs : 2yr old diagnosed with benign brain tumour]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44802&PID=5887914&title=2yr-old-diagnosed-with-benign-brain-tumour#5887914 Author: Mumzee13
Subject: 2yr old diagnosed with benign brain tumour
Posted: 23 August 2015 at 4:45pm

Hi all. My daughter has recently been diagnosed with a benign brain tumour and I am hoping to find someone who has been through a similar situation as I am struggling with parenting a tantruming 2yo while trying to accept this horrible reality ontop of surgery fears ect. It is difficult being in limbo waiting to see a specialist.....]]> Sun, 23 Aug 2015 16:45:14 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44802&PID=5887914&title=2yr-old-diagnosed-with-benign-brain-tumour#5887914 <![CDATA[Parenting a child with special needs : CFS Children]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44794&PID=5887609&title=cfs-children#5887609 Author: twinkletoes
Subject: CFS Children
Posted: 12 August 2015 at 12:18pm

Hi there,

I'm just wondering if there are any families with children under 10 out there that have been diagnosed with CFS (Chronic fatique syndrome)

Our 3yr old was diagnosed middle of last year after a number of tough months, to tired to do anything, upset often by nothing, pale all the time, playing with a friend for an hour and needing a whole afternoon if now a whole day after to recover.

We thought she had improved, energy levels were better, but still needed extra sleep.

But in the last month or two things have started sliding backwards again.

For the last 6mths she has also been struggling with Iron Deficient anemia , something we are still trying to get back into the normal zone and waiting for a paed appointment at the moment to try and find out more about why this keeps happening. She's been under a paed for almost 2yrs now, but we have just moved from Auckland to Papamoa, so still finding our feet down here.

Interested to hear from others with similar issues.

xx]]> Wed, 12 Aug 2015 12:18:38 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44794&PID=5887609&title=cfs-children#5887609 <![CDATA[Parenting a child with special needs : Cleft bubbas?]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=41003&PID=5883339&title=cleft-bubbas#5883339 Author: mizim
Subject: Cleft bubbas?
Posted: 06 May 2015 at 7:50am

Hi BeccaBecca. I'm a fellow cleft mum, 4 years old now, bilateral cleft lip and palate. There is a great page on Facebook for cleft affected families.
Cleft lip only it is possible to breastfeed but from what I hear requires a lot of determination.

If you message me on Facebook I can send you a link to the group. Miriam Matthews - foggy street profile photo]]> Wed, 06 May 2015 07:50:27 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=41003&PID=5883339&title=cleft-bubbas#5883339 <![CDATA[Parenting a child with special needs : Cleft bubbas?]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=41003&PID=5883336&title=cleft-bubbas#5883336 Author: BeccaBecca
Subject: Cleft bubbas?
Posted: 06 May 2015 at 7:01am

Hi There,

I have just had my 18 week scan and found out my baby girl has a cleft lip, and the palate appears to be intact, but we will need another scan with fetal medicine to check further.

I was wondering if you managed to breastfed with your bubba? And would love to hear more about having a baby with a cleft lip if that's possible.

I looked on facebook and couldn't find any support groups.

This is all so new to me still.]]> Wed, 06 May 2015 07:01:25 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=41003&PID=5883336&title=cleft-bubbas#5883336 <![CDATA[Parenting a child with special needs : Agenesis of the corpus callosum]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44625&PID=5882736&title=agenesis-of-the-corpus-callosum#5882736 Author: kalika
Subject: Agenesis of the corpus callosum
Posted: 21 April 2015 at 1:54pm

Hi, am wondering if anyone has any personal experience with this brain abnormality? Thanks in advance..]]> Tue, 21 Apr 2015 13:54:55 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44625&PID=5882736&title=agenesis-of-the-corpus-callosum#5882736 <![CDATA[Parenting a child with special needs : Developmental Delay]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5881289&title=developmental-delay#5881289 Author: sahithya176687
Subject: Developmental Delay
Posted: 16 March 2015 at 7:32pm

To overcome Developmental delay in you child, Plan for simple physical activities for your kid.
Get your child socialize with other kids.
Speech therapy can help children with articulation and expressive disorders.

]]> Mon, 16 Mar 2015 19:32:01 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5881289&title=developmental-delay#5881289 <![CDATA[Parenting a child with special needs : birthmarks]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44463&PID=5878941&title=birthmarks#5878941 Author: M.i.s.s.y
Subject: birthmarks
Posted: 27 January 2015 at 2:04pm

HI there, my 2nd daughter grew a giant strawberry birthmark on her neck, so different from yours, however the same dr treats different kinds. If you can try get to see Dr Swee Tan at Hutt Hospital, he is awesome, Jazi had her's cut off at 8months old, however for Your type there was a medication that other babies were using to make them go away. Im not sure where you are located, but all our travel to Wellington was paid for. hope this helps even a tiny bit. I dont come on here very often any more, but please feel free to pm me. :-) All the best.]]> Tue, 27 Jan 2015 14:04:16 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44463&PID=5878941&title=birthmarks#5878941 <![CDATA[Parenting a child with special needs : birthmarks]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44463&PID=5877588&title=birthmarks#5877588 Author: sokol1237
Subject: birthmarks
Posted: 27 December 2014 at 10:00am

Hi everyone,

Im hoping to hear from someone who either knows someone or has gone through the similar situation.
Our little girl was born with a very big birth mark on half of her face ( said to be a port wine birthmark)
Ofcourse there is an associated syndrome that can often be linked to such birthmarks- Sturge Weber syndrome, and we yet have to go to the MRI and vision tests with the specialists to rule it out.
However with the birthmark we are interested in Laser treatment to treat it as and when needed.
Any info on the above from personal or someone elses experience will be really appreciated.
We are quite confident it is just the birthmark that needs to be dealt with, as she seems to be a very healthy strong girl with no signs of Sturge Weber Syndrome. But ofcourse will wait for the referral to be very certain for the piece of mind.

Hope to hear from you guys soon!]]> Sat, 27 Dec 2014 10:00:12 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44463&PID=5877588&title=birthmarks#5877588 <![CDATA[Parenting a child with special needs : Ru's Birthday]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44291&PID=5874144&title=rus-birthday#5874144 Author: Rammie
Subject: Ru's Birthday
Posted: 13 September 2014 at 12:59pm

Hi everyone,

Thought I will share this with you. My son (RU) with CP has his 28th birthday on monday the 15th of Sept. He is been given a party today at his home as it is a saturday. He is so excited when we to told him and counting the sleeps. He is so adorable and has the most charming smile that all fall in love with him at first time itself. Hope we will make this day special for him as he is very special with special needs.
]]> Sat, 13 Sep 2014 12:59:04 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44291&PID=5874144&title=rus-birthday#5874144 <![CDATA[Parenting a child with special needs : APRAXIA]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44280&PID=5874024&title=apraxia#5874024 Author: Fiona1972
Subject: APRAXIA
Posted: 10 September 2014 at 2:15pm

Hi there,
Recently my nearly 3 year old was diagnosed with childhood apraxia of speech (CAS).

Children with CAS have problems saying sounds, syllables, and words. This is not because of muscle weakness or paralysis. The brain has problems planning to move the body parts (e.g., lips, jaw, tongue) needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.

I was just wondering if anyone has any experience with this or also has a child who has CAS. Be great to talk to other with or who have experienced this....]]> Wed, 10 Sep 2014 14:15:22 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44280&PID=5874024&title=apraxia#5874024 <![CDATA[Parenting a child with special needs : Duane syndrome]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44180&PID=5870901&title=duane-syndrome#5870901 Author: Amesz
Subject: Duane syndrome
Posted: 08 July 2014 at 12:51pm

Just wanted to see if there is anyone out there that has or child has Duane Syndrome? My Miss 2 has it in her left eye! I have search around and their doesn't seem to me much support out in New Zealand for this.

I would love to talk to someone who has has it or child has it, I've read a Blog from a 18 year old from the US online and it brought me to tears what she went through during school. ]]> Tue, 08 Jul 2014 12:51:49 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=44180&PID=5870901&title=duane-syndrome#5870901 <![CDATA[Parenting a child with special needs : 2yr old with NO speech OR comprehension]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=39616&PID=5862568&title=2yr-old-with-no-speech-or-comprehension#5862568 Author: Care
Subject: 2yr old with NO speech OR comprehension
Posted: 04 March 2014 at 5:03am

yes my daughter is the same and she say mum dad nan and bananana/nana at times but screams mostly]]> Tue, 04 Mar 2014 05:03:17 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=39616&PID=5862568&title=2yr-old-with-no-speech-or-comprehension#5862568 <![CDATA[Parenting a child with special needs : Developmental Delay]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5862567&title=developmental-delay#5862567 Author: Care
Subject: Developmental Delay
Posted: 04 March 2014 at 4:53am

hi there i to have a gdd i find it hard to relate to anyone seem to many people compare i feel like its every where around me and i dont want to get out of the house i live in auckland feel free to email me or add me on facebook
caz-maa@hotmail.com ]]> Tue, 04 Mar 2014 04:53:52 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5862567&title=developmental-delay#5862567 <![CDATA[Parenting a child with special needs : Heart Children roll call]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5852324&title=heart-children-roll-call#5852324 Author: aims_one
Subject: Heart Children roll call
Posted: 30 October 2013 at 3:58pm

Hi Rheenz1. I don't think people use this forum much now as there is a closed group Facebook page instead. Everyone on there is really supportive and great for advice/info. Let me know if you want to join. I'd just need to temporarily facebook friend you, and then can add to the group.
Cheers
Amy]]> Wed, 30 Oct 2013 15:58:29 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5852324&title=heart-children-roll-call#5852324 <![CDATA[Parenting a child with special needs : Heart Children roll call]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5852322&title=heart-children-roll-call#5852322 Author: rheenz1
Subject: Heart Children roll call
Posted: 30 October 2013 at 3:43pm

Hi, we have a little boy, about to turn 1 that has pulmonary artresia (sp), he's had two major heart surgeries and due to have his fontarn done around 3 years of age. Growing okay, and doing well so far. Would love to hear from other mums in the same/similar situation. Thanks :)]]> Wed, 30 Oct 2013 15:43:30 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5852322&title=heart-children-roll-call#5852322 <![CDATA[Parenting a child with special needs : Heart Children roll call]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5850044&title=heart-children-roll-call#5850044 Author: Keleho
Subject: Heart Children roll call
Posted: 03 October 2013 at 9:28am

Thanks Limochick!
Baby (he or she, we kept it a surprise :P ) is still in my belly at the moment, Im just shy of 21 weeks (found out about things last week at the anatomy scan).]]> Thu, 03 Oct 2013 09:28:55 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5850044&title=heart-children-roll-call#5850044 <![CDATA[Parenting a child with special needs : Heart Children roll call]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5850037&title=heart-children-roll-call#5850037 Author: Limochick
Subject: Heart Children roll call
Posted: 03 October 2013 at 8:17am

Hi Keleho, I'm so sorry to hear about your sons diagnosis. How old is he?? I will send you a pm on here so then you can join us ]]> Thu, 03 Oct 2013 08:17:42 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5850037&title=heart-children-roll-call#5850037 <![CDATA[Parenting a child with special needs : Heart Children roll call]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5850030&title=heart-children-roll-call#5850030 Author: Keleho
Subject: Heart Children roll call
Posted: 02 October 2013 at 11:04pm

Does anyone still come in here?
We found out last week that our #3 has Tetralogy of Fallot. Heading to Auckland for a CTG in a couple of weeks to determine the extent and talk over what happens next with the drs, so early days and rather daunting at the moment. Would love to join the facebook group ]]> Wed, 02 Oct 2013 23:04:07 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5850030&title=heart-children-roll-call#5850030 <![CDATA[Parenting a child with special needs : Developmental Delay]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5845861&title=developmental-delay#5845861 Author: Jela
Subject: Developmental Delay
Posted: 16 August 2013 at 1:48pm

Hi i am in Wellington, i didn't find any group here....Thanks for your reply susieq:)
]]> Fri, 16 Aug 2013 13:48:02 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5845861&title=developmental-delay#5845861 <![CDATA[Parenting a child with special needs : Developmental Delay]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5845797&title=developmental-delay#5845797 Author: susieq
Subject: Developmental Delay
Posted: 16 August 2013 at 8:01am

Hi Jelena126297
where abouts are you, i have a 28 year old daughter who is developmentally delayed, she is about 11/12 in her delay i think, I live in Pakuranga Auckland and we have a special needs support group for parents.caregivers of children.adults and there are recreation programmes here in Auckland that our children can access. I send a newsletter out once a term

]]> Fri, 16 Aug 2013 08:01:35 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5845797&title=developmental-delay#5845797 <![CDATA[Parenting a child with special needs : Developmental Delay]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5845788&title=developmental-delay#5845788 Author: Jelena126297
Subject: Developmental Delay
Posted: 16 August 2013 at 5:33am

Hi my son is 8years old, diagnosed with GDD.Is there anyone keen to meet and talk?If there is any gathering or group I would like to join and have a chat.Also, as play dates are rare for many kids with this problem, do you think it is good idea to bring kids and maybe we can have experimental play day?I hope to hear from anyone soon, thanks.]]> Fri, 16 Aug 2013 05:33:51 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5845788&title=developmental-delay#5845788 <![CDATA[Parenting a child with special needs : Research Study: Undiagnosed medical condition]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43430&PID=5844646&title=research-study-undiagnosed-medical-condition#5844646 Author: TatianeYanes
Subject: Research Study: Undiagnosed medical condition
Posted: 06 August 2013 at 8:25pm

Hi Susiq,

The survey will be open for another couple of weeks so you can still participate in the study.

Thanks
Tatiane
]]> Tue, 06 Aug 2013 20:25:15 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43430&PID=5844646&title=research-study-undiagnosed-medical-condition#5844646 <![CDATA[Parenting a child with special needs : Research Study: Undiagnosed medical condition]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43430&PID=5844404&title=research-study-undiagnosed-medical-condition#5844404 Author: susieq
Subject: Research Study: Undiagnosed medical condition
Posted: 04 August 2013 at 5:15pm

is it too late to do the study
]]> Sun, 04 Aug 2013 17:15:23 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43430&PID=5844404&title=research-study-undiagnosed-medical-condition#5844404 <![CDATA[Parenting a child with special needs : Research Study: Undiagnosed medical condition]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43430&PID=5844339&title=research-study-undiagnosed-medical-condition#5844339 Author: TatianeYanes
Subject: Research Study: Undiagnosed medical condition
Posted: 03 August 2013 at 4:06pm

Hi Everyone,

Just a quick note to say thank you to everyone who has participated in our study so far, we appreciate you taking the time to complete our survey.

The research project will be finishing up soon so if you would like to participate please click on the link below:

https://prodsurvey.rcs.griffith.edu.au/undiagnosed


Tatiane ]]> Sat, 03 Aug 2013 16:06:35 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43430&PID=5844339&title=research-study-undiagnosed-medical-condition#5844339 <![CDATA[Parenting a child with special needs : Research Study: Undiagnosed medical condition]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43430&PID=5844338&title=research-study-undiagnosed-medical-condition#5844338 Author: TatianeYanes
Subject: Research Study: Undiagnosed medical condition
Posted: 03 August 2013 at 4:02pm

Hi Susieq,

If you were never given an explanation for what caused your daughter's developmental delay then you are eligible to participate. We are keen to hear from as many parents as possible and with varying experiences so we have a good overview of the issues associated with not having a diagnosis.

Thanks
Tatiane]]> Sat, 03 Aug 2013 16:02:19 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43430&PID=5844338&title=research-study-undiagnosed-medical-condition#5844338 <![CDATA[Parenting a child with special needs : Attachment Disorder]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43278&PID=5842375&title=attachment-disorder#5842375 Author: Rexy
Subject: Attachment Disorder
Posted: 15 July 2013 at 3:43pm

The mental health team says SS is 'too young' for play therapy and that WE are the ones that need to change. He's 2 months off 5. We have a psychologist involved but she only really gives us strategies and is trying to get some consistencies with here and his mums place.
Problem is he's really good at daycare, so no one gets what he's like when he's home with us. I totally get what you mean about feeling like you're going crazy!]]> Mon, 15 Jul 2013 15:43:03 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43278&PID=5842375&title=attachment-disorder#5842375 <![CDATA[Parenting a child with special needs : Attachment Disorder]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43278&PID=5842006&title=attachment-disorder#5842006 Author: sunnyhoney
Subject: Attachment Disorder
Posted: 11 July 2013 at 10:10pm

Are you able to get help from a psychologist through mental health services?
We have play therapy once a fortnight through the Kari Centre (Auck) and have found them to be really supportive, helpful and caring. Perhaps there is a similar service where you are??

Our journey started with us ruling out other issues ie hearing, autism, adhd etc. Clearly there was a problem with her behaviours. After everything was done that Starship could do testing wise they referred us to the Kari Centre and they diagnosed. It was kind of nice to finally have an explanation and to know I wasn't going crazy and there really was a problem iykwim.
Life has been a battle since day one in my relationship with DD it's only now that I feel like we are getting somewhere. And still a long road to go.
How old is your son?]]> Thu, 11 Jul 2013 22:10:44 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43278&PID=5842006&title=attachment-disorder#5842006 <![CDATA[Parenting a child with special needs : Attachment Disorder]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43278&PID=5841998&title=attachment-disorder#5841998 Author: Rexy
Subject: Attachment Disorder
Posted: 11 July 2013 at 9:22pm

It is definitely a 'rare' type of condition here, I belong to a group on facebook for parents of attachment kids and there is so much being done in the USA, yet so little is done here.
I felt something wasn't right socially with my SS, with severe tantrums and violence, and cognition didnt seem quite right. I pushed for a referral to the child development unit at the b4 school check and he was assessed, but no follow up, so I spoke to our plunket nurse who did a referral to child and adolescent mental health. He was assessed, and a diagnosis given, but all they have given us so far is parenting courses and strategies, and some early intervention from ministry of education. What I would really like is some play therapy and someone helping him self regulate his emotions, as I am so tired of being a punching bag..
I did not know about parent to parent, so thanks! I have just emailed them :)

How about you? How did your journey start?]]> Thu, 11 Jul 2013 21:22:22 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43278&PID=5841998&title=attachment-disorder#5841998 <![CDATA[Parenting a child with special needs : Attachment Disorder]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43278&PID=5841960&title=attachment-disorder#5841960 Author: sunnyhoney
Subject: Attachment Disorder
Posted: 11 July 2013 at 5:55pm

Definitely not the only ones Rexy :)

Funny, I have not been on the forum for a few years. I was having a squizz in a bored moment and saw your post.

No-one seems to understand attachment disorder, it seems to be a rare problem in our circles. So it's nice to have someone else 'out there' :)

Have you been in touch with Parent to Parent? They arranged a contact from someone who has teens with attachment disorder and while it was only one phone call it was helpful to ask a few questions from someone who had been doing it a long time.

How did you guys come upon a diagnosis?]]> Thu, 11 Jul 2013 17:55:35 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43278&PID=5841960&title=attachment-disorder#5841960 <![CDATA[Parenting a child with special needs : Attachment Disorder]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43278&PID=5841946&title=attachment-disorder#5841946 Author: Rexy
Subject: Attachment Disorder
Posted: 11 July 2013 at 1:46pm

Yay, I was beginning to think we were the only ones!]]> Thu, 11 Jul 2013 13:46:40 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43278&PID=5841946&title=attachment-disorder#5841946 <![CDATA[Parenting a child with special needs : Research Study: Undiagnosed medical condition]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43430&PID=5841402&title=research-study-undiagnosed-medical-condition#5841402 Author: susieq
Subject: Research Study: Undiagnosed medical condition
Posted: 07 July 2013 at 8:48am

I have a 27 year old daughter who was only ever diagnosed as epileptic and developmental delay, but probably more than these
]]> Sun, 07 Jul 2013 08:48:46 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43430&PID=5841402&title=research-study-undiagnosed-medical-condition#5841402 <![CDATA[Parenting a child with special needs : Research Study: Undiagnosed medical condition]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43430&PID=5841366&title=research-study-undiagnosed-medical-condition#5841366 Author: Tatiane122345
Subject: Research Study: Undiagnosed medical condition
Posted: 06 July 2013 at 5:42pm

You are invited to participate in a research study investigating the experiences of parents raising a child with an undiagnosed medical condition. This study aims to understand the unmet needs of parents with the goal of improving coping resources and support available to families in similar situations. Individuals who are 18 years or older and have at least one child with a medical condition that has remained undiagnosed for more than 2 years are invited to participate.

Participation involves the completion of an anonymous online survey which should take approximately 30 minutes to complete. This study is being conducted by a Masters of Genetic Counselling student from Griffith University, Brisbane Australia, and will be conducted in accordance with the National Statement on Ethical Conduct in Human Research.

Please pass this information on to anyone who might meet the criteria for study.The survey can be found at:

https://prodsurvey.rcs.griffith.edu.au/undiagnosed

If you have any questions please contact:

Linda Humphrey
Principle Supervisor
Associate Lecture
Griffith University
Ph: +61 7 3735 7564
Email: l.humphreys@griffith.edu.au

Tatiane Yanes
Principle student researcher
Masters of Genetic Counselling
Griffith University
Email: tatiane.yanes@griffithuni.edu.au

Edited by Tatiane122345 - 07 July 2013 at 4:51pm]]> Sat, 06 Jul 2013 17:42:54 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43430&PID=5841366&title=research-study-undiagnosed-medical-condition#5841366 <![CDATA[Parenting a child with special needs : argh... schooling]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=24820&PID=5840960&title=argh-schooling#5840960 Author: sunnyhoney
Subject: argh... schooling
Posted: 03 July 2013 at 5:00pm

sorry, have just realised how old this thread is :-/]]> Wed, 03 Jul 2013 17:00:38 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=24820&PID=5840960&title=argh-schooling#5840960 <![CDATA[Parenting a child with special needs : argh... schooling]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=24820&PID=5840959&title=argh-schooling#5840959 Author: sunnyhoney
Subject: argh... schooling
Posted: 03 July 2013 at 4:59pm

Jodie, what kind of needs does your son have?
We had issues at kindy and had to get a support person for my daughter. We have chosen to homeschool for the time being. We were all very anxious about how she would go at school. Things are a lot better with DD now that anxiety/issue has been removed.
I can completely understand how you feel. I used to dread going to pick her up from kindy to get the "report" on her behaviour. ]]> Wed, 03 Jul 2013 16:59:53 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=24820&PID=5840959&title=argh-schooling#5840959 <![CDATA[Parenting a child with special needs : Attachment Disorder]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43278&PID=5840957&title=attachment-disorder#5840957 Author: sunnyhoney
Subject: Attachment Disorder
Posted: 03 July 2013 at 4:53pm

Hi there, my daughter is 5 and has attachment disorder.
I would love to have some others to chat to who understand too :)]]> Wed, 03 Jul 2013 16:53:28 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43278&PID=5840957&title=attachment-disorder#5840957 <![CDATA[Parenting a child with special needs : Attachment Disorder]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43278&PID=5834879&title=attachment-disorder#5834879 Author: Rexy
Subject: Attachment Disorder
Posted: 09 May 2013 at 7:42pm

Hi everyone,

I am step mum to a boy with attachment disorder and am wondering if there are other parents going through the same thing and would be interested in starting a support thread for one another.]]> Thu, 09 May 2013 19:42:13 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43278&PID=5834879&title=attachment-disorder#5834879 <![CDATA[Parenting a child with special needs : Scans gone wrong..]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43257&PID=5834402&title=scans-gone-wrong#5834402 Author: BigFamily
Subject: Scans gone wrong..
Posted: 04 May 2013 at 9:29am

Hi, I had four scans misread at a radiology clinic in Auckland and my child was born with a disability & defects & after the scan report being reviewed it appears that it should've been picked up by the sonographer/radiologist - I'm just curious - has anyone else had a bad experience with misread scans? .. ]]> Sat, 04 May 2013 09:29:36 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43257&PID=5834402&title=scans-gone-wrong#5834402 <![CDATA[Parenting a child with special needs : Something or Nothing?]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43161&PID=5832203&title=something-or-nothing#5832203 Author: Free2BeMe
Subject: Something or Nothing?
Posted: 12 April 2013 at 12:07am

My second son drove me to distraction at times, I found the book 'Raising your spirited child' by Mary Kurcinka really helpful. GL.]]> Fri, 12 Apr 2013 00:07:51 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43161&PID=5832203&title=something-or-nothing#5832203 <![CDATA[Parenting a child with special needs : Bright Late Talking Children]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43052&PID=5832202&title=bright-late-talking-children#5832202 Author: Free2BeMe
Subject: Bright Late Talking Children
Posted: 12 April 2013 at 12:02am

My third son didn't really talk until he was 3.5yrs. (A lot later than his brothers) I was concerned enough to get his hearing tested by an audiologist at the hospital, his hearing was fine, and he turned 4 in Feb this year, he does not stop talking now.]]> Fri, 12 Apr 2013 00:02:25 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43052&PID=5832202&title=bright-late-talking-children#5832202 <![CDATA[Parenting a child with special needs : Something or Nothing?]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43161&PID=5830540&title=something-or-nothing#5830540 Author: Glag2
Subject: Something or Nothing?
Posted: 26 March 2013 at 3:02pm

Thanks for the reply, I will look into it. She has been tested for allergies and intolerances in food and all came back fine.]]> Tue, 26 Mar 2013 15:02:34 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43161&PID=5830540&title=something-or-nothing#5830540 <![CDATA[Parenting a child with special needs : Something or Nothing?]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43161&PID=5830462&title=something-or-nothing#5830462 Author: AandCsmum
Subject: Something or Nothing?
Posted: 25 March 2013 at 8:16pm

She might be reacting to additives & preservatives in her food. The eating all the time but only certain things shows that she's craving something that is in them, kinda like an addiction. Have a look at the packets & see if there is something in common in them.

Have a look at Food intolerance Network and specifically facts sheets by symptoms .

Hoping you have some help soon, my DD had oppositional definance & this helped us hugely.]]> Mon, 25 Mar 2013 20:16:40 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43161&PID=5830462&title=something-or-nothing#5830462 <![CDATA[Parenting a child with special needs : Something or Nothing?]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43161&PID=5830318&title=something-or-nothing#5830318 Author: Glag2
Subject: Something or Nothing?
Posted: 24 March 2013 at 5:08pm

After a long time without posting im hoping someone can give me some advice or suggestions regarding my two year old daughter.
Here goes...Right from the word go she has being the opposite of my eldest daughter, and I know that all children are different and we shouldnt compare but my DD behaviour often has me questioning(in despair) is this normal? She is a screamer and screams alot and for a long time>She bites, pinches,pulls hair,scratches,stomps on people and animals, has no fears and cannot be dissaplined, I say this because I feel like Ive tried everything with her and it means nothing, We have tried sticker charts, telling her off, ignoring her, crying(real and pretend)putting in room, taking things off her, gently explaining things to her, it all means nothing, we either get laughed at,spat at or she screams which can result in her either wanting me and only me or she will get the nearest thing to her and go out of her way to destroy it.She wants to eat all the time but eats only certain things, alot of things go in but the most goes in and get either spat out or chewed then spat out,Her sister is daily hurt with either scratching or hairpulling as well as the animals in our house. She screams if music is on loudish or if we sing to her or to ourselves.
I feel terrible writing all of this but am really worried as things are not improving, her speech is the only thing that I could say had improved yet I know that its behind for her age,
She has had her hearing checked as well as her vision, she is under a paediatrician for family allergies, he has refered her to a neurodevelopmentalist who we see in a fortnight, and he refered her to the Early intervention team who we are waiting to see and Plunket has also refered her to the Early intervention team as well as a speech thereapist.
I love my little girl to bits and somedays I think, ohh things havnt been so bad today but it is often short lived. Im tired of complete strangers shaking there heads at me or telling me that she just needs a good smack. I feel sorry for her as she seems so frustrated alot of the time, or when Im telling her off she can be smiling at me which makes me feel angry and sad for her. I knw it sounds like ive got a really naughty daughter but ive got to the point where it seems like there is more than naughty behaviour going on and want answers. Has anyone had anything similar or any advice.
I hope this makes sense]]> Sun, 24 Mar 2013 17:08:14 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43161&PID=5830318&title=something-or-nothing#5830318 <![CDATA[Parenting a child with special needs : Nystagmus]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=41617&PID=5826864&title=nystagmus#5826864 Author: Laurz_20
Subject: Nystagmus
Posted: 14 February 2013 at 11:34pm

I come on this site all the time and have missed this completely. My daughter was diagnosed with congenital nystagmus at 1 year we noticed because in every photo we had of her she was always looking at the camera with a head tilt. It took us a long time to get seen by a specialist because the optometrist we were referred to couldn't see the problem. We have now been under an opthomologist for the last 2.5 years and DD has been put on the waiting list for an operation to move her null point.
DD trips a lot and seems to be clumsier than her peers. It's really interesting reading about other people's experiences as I have never met anyone else with this condition. DD also has congenital hypothyroism which we have been told is completely unrelated. EleanorT I would love to hear how your son is doing? And whether u think the operation was worth it? ]]> Thu, 14 Feb 2013 23:34:43 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=41617&PID=5826864&title=nystagmus#5826864 <![CDATA[Parenting a child with special needs : Bright Late Talking Children]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43052&PID=5826572&title=bright-late-talking-children#5826572 Author: Devoted Mum
Subject: Bright Late Talking Children
Posted: 12 February 2013 at 2:30pm

Hi Bizzy,
DS is a late talker. He has expressive language delay. He talks but only in 1-3 word sentences and can not have back and forth conversation. ]]> Tue, 12 Feb 2013 14:30:36 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43052&PID=5826572&title=bright-late-talking-children#5826572 <![CDATA[Parenting a child with special needs : Bright Late Talking Children]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43052&PID=5826569&title=bright-late-talking-children#5826569 Author: Bizzy
Subject: Bright Late Talking Children
Posted: 12 February 2013 at 2:16pm

Gosh you see a lot of people LOL!
Not sure what you mean by difficulty expressing himself. Does he talk at all? is it emotions he doesnt deal with? I dont know a lot of 3.5 yr olds who do express themselves that well, unless it is in a tantrum lol!]]> Tue, 12 Feb 2013 14:16:52 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43052&PID=5826569&title=bright-late-talking-children#5826569 <![CDATA[Parenting a child with special needs : Bright Late Talking Children]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43052&PID=5826555&title=bright-late-talking-children#5826555 Author: Snow105719
Subject: Bright Late Talking Children
Posted: 12 February 2013 at 12:20pm

Hi,

Does anyone have a child who is bright but is a late talker (and does not have Autism)?
Apart from overseas forums, I can't find any parents with bright late talking children in NZ.

I have read a book by Thomas Sowell called 'Einstein Syndrome' which fits my son perfectly.
He is 3.5 years old and knows all his alphabet. He can write each letter without having to copy. He knows his numbers too and can write these also. He has wonderful fine motor skills and fairly good gross motor skills. He's affectionate, sociable & humourous. He loves complex jigsaw puzzles and loves music. HOWEVER he has difficulty expressing himself verbally. Our Develppmental Pediatrician ruled out Autism and global delay but our Ed Psych has written him off and I just can't get my head around why she thinks he basically retarded when he clearly knows a lot more than most children his age. Although, our Devt Ped, Ed Psych & Speech Therapist all admitted they didn't know what to do about our son. They haven't come across a child like mine before.

I'd love to hear from you if your child is bright but a late talker. I'm finding this journey rather frustrating and lonely at times.

]]> Tue, 12 Feb 2013 12:20:46 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=43052&PID=5826555&title=bright-late-talking-children#5826555 <![CDATA[Parenting a child with special needs : Cystic Fibrosis]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=42628&PID=5826083&title=cystic-fibrosis#5826083 Author: Mrs Mac
Subject: Cystic Fibrosis
Posted: 06 February 2013 at 4:36pm

I'm not parenting a child who has cystic fibrosis, but I have a friend who has it. She's 30, just had a lung transplant and is in training to run a half marathon. There are huge challenges that come with having cystic fibrosis, but she doesn't let it stop her from doing anything she wants to do.]]> Wed, 06 Feb 2013 16:36:53 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=42628&PID=5826083&title=cystic-fibrosis#5826083 <![CDATA[Parenting a child with special needs : Developmental Delay]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5820208&title=developmental-delay#5820208 Author: james
Subject: Developmental Delay
Posted: 29 November 2012 at 12:55pm

soo ture, well put escadachic my son has dyspraxia which effects his speach co-oradnation and spaceicl awearness I blamed myself for a long time has I too have Dyspraxia but found i wasnt helping myself or my son playing the blame game. although i have been lucky with outhers opions i know it would hurt for people who are trying to be helpful have you tryed to tell them to back off or get your partner to help big hugs]]> Thu, 29 Nov 2012 12:55:29 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5820208&title=developmental-delay#5820208 <![CDATA[Parenting a child with special needs : Developmental Delay]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5820139&title=developmental-delay#5820139 Author: escadachic
Subject: Developmental Delay
Posted: 28 November 2012 at 5:46pm

I find some kids avoid my daughter, who is 9. Due to her developmental delay. She's 2 yrs delayed.

I find parents seem to be better. As it's not as obvious now she's 9.

Yeah, I think it's normal to blame ourselves for the delays. Though it actually never is our fault.

I think we compare ourselves too much to other parents and children.

School is pretty supportive with her and her learning which is good.

But yeah, some kids are mean to her. Though I think that's improving.

She went to Otaki Health Camp earlier this year, which did wonders for her self esteem, confidence and taught her self management and self care and lots of useful stuff.

She's so much easier then she was before that camp.

My family can sometimes hassle me about my parenting. But fact is, no one is perfect parent wise and we all have our own way that works for us.

]]> Wed, 28 Nov 2012 17:46:49 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5820139&title=developmental-delay#5820139 <![CDATA[Parenting a child with special needs : Developmental Delay]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5820134&title=developmental-delay#5820134 Author: confused???
Subject: Developmental Delay
Posted: 28 November 2012 at 4:56pm

I have two children with developmental delay. A boy who is 8 but has Duchenne Muscular Dystrophy. He is a lot slower physically than his friends and academically he is about two years behind his peers. He struggles with writing, maths and reading in particular. He is a real little trooper. What he struggles with in one area he makes up for in another. I get the whole "awkward" moment thing when other parents find out. It's almost like there's this unwritten thing where I must have done or not done something to have my son have this condition. I don't know. I find it hard to have the teachers take me seriously too. It's almost like they assume I mustn't be helping my son with his homework which is contributing to his issues at school funnily enough however the school has documentation about my son's condition stating that boys with this condition do often have learning disabilities. My daughter who is 2 has a similar delay to my son as she is most likely a carrier for the condition my son has which may have caused her muscular weakness. She has been a late walker and talker (so only months of delay). My son was like that but of course the gap widened once he got to school. I don't know if my daughter will be the same as my son. It's too hard to say I guess. She's a real trooper too.
I find it so hard relating to parents with "normal" children. There seems to be that judgement there that I don't play with my kids enough, read to them enough etc etc. I even get this from family members. One family member tried to tell me duchenne muscular dystrophy is caused by a vitamin D deficiency which must have been caused by my kids not getting enough sunlight! ]]> Wed, 28 Nov 2012 16:56:33 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5820134&title=developmental-delay#5820134 <![CDATA[Parenting a child with special needs : Apraxia of Speech or Dyspraxia]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=42683&PID=5816304&title=apraxia-of-speech-or-dyspraxia#5816304 Author: gracia
Subject: Apraxia of Speech or Dyspraxia
Posted: 11 October 2012 at 9:54am

I've just had a quick google and it appears that the speech unit at Thorndon school closed in 1996 which is just after my brother when back to our local primary school]]> Thu, 11 Oct 2012 09:54:34 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=42683&PID=5816304&title=apraxia-of-speech-or-dyspraxia#5816304 <![CDATA[Parenting a child with special needs : Apraxia of Speech or Dyspraxia]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=42683&PID=5816296&title=apraxia-of-speech-or-dyspraxia#5816296 Author: gracia
Subject: Apraxia of Speech or Dyspraxia
Posted: 11 October 2012 at 8:45am

I'm not sure if this is any help but my younger brother (now 26) has a moderate case of verbal/developmental dyspraxia and I have a much milder case of it (to the point no one would know as an adult if I hadn't told them and I teach English as a second language). We grew up in Wellington and anything I remember is from the late 80's and 90's.

From what I remember I went to a normal school and then hadspeech therapy at Tirangi School (which had a speech unit attached) weekly until I was 8 or 9. My brother who is affected more went to Thorndon School which had a specialist speech unit attached (which was better than the one at Tirangi) and was mainstreamed in a class with other students his age. He did well at school and got school cert, university entrance and a degree. He has found a career that suits him. From memory he wasn't talking at 3 and started putting decent sentences together once he started school. Now it is fairly noticeable that he does have a speech issue but is able to express himself. We are both somewhat 'clumsy' and I have an occasional issue with sensory overload if I'm in a very noisy place - I haven't talked to him about it for ages so I don't know about him.


Edited by gracia - 11 October 2012 at 8:52am]]> Thu, 11 Oct 2012 08:45:45 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=42683&PID=5816296&title=apraxia-of-speech-or-dyspraxia#5816296 <![CDATA[Parenting a child with special needs : Apraxia of Speech or Dyspraxia]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=42683&PID=5816147&title=apraxia-of-speech-or-dyspraxia#5816147 Author: rowie
Subject: Apraxia of Speech or Dyspraxia
Posted: 09 October 2012 at 10:10pm

Hello,

I have a little girl who is 2.4 months old and is suspected to have Childhood Apraxia of Speech. It has in the past been lumped in with other disorders or called verbal dypraxia among other things! She is bright and bubbly, full of life and is fine physically but did not babble as an infant and is only just starting to say (and retain) a couple of words, but she mostly just says 'a da da da da da' for everything. Apraxia is a motor planning disorder so her mouth cant make the sounds even though she is wanting to talk. This disorder usually comes with other issues like sensory problems, dyslexia etc but sometime is just on it's own.

Is there any one else in Wellington (or NZ) that is dealing with this.??????

Thanks
]]> Tue, 09 Oct 2012 22:10:03 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=42683&PID=5816147&title=apraxia-of-speech-or-dyspraxia#5816147 <![CDATA[Parenting a child with special needs : Developmental Delay]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5815522&title=developmental-delay#5815522 Author: kiwigal
Subject: Developmental Delay
Posted: 04 October 2012 at 12:47am

My son is 9.5 and  was diagnose with autism at 22 months but now he is a lot older the SLT has talked about him having verbal dyspraxia. He doesn't "Act" like an autistic child if he is interested in something you would think he is just like any other child. Parenting him now is a lotharder than when he was younger. I am tearing my hair out with him. Taking him places does put a damper on things and sad things is we hardly ever do anything as a family.  
When we were in Auckland he was in a maintream school and was a popular kid around the school I miss that school. We moved to the Hawkes Bay over a year ago and put him in a special class because he was lacking in so many areas. In jhis class he has got a variety of special needs ASD, developmental delay and ADHD I think.
 
I would go and see the Dr if you can be put Sophie onto the disability allowance as it is not income tested Jacob gets $90 a fortnight.
]]> Thu, 04 Oct 2012 00:47:29 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=40747&PID=5815522&title=developmental-delay#5815522 <![CDATA[Parenting a child with special needs : Liver kids?]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=42639&PID=5814910&title=liver-kids#5814910 Author: Kellz
Subject: Liver kids?
Posted: 29 September 2012 at 7:41am

I have a friend who's now 5yr old girl had a liver transplant (from part of her Dads liver) as a baby. PM me your email and I could pass it on to her if u like ]]> Sat, 29 Sep 2012 07:41:16 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=42639&PID=5814910&title=liver-kids#5814910 <![CDATA[Parenting a child with special needs : Liver kids?]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=42639&PID=5814902&title=liver-kids#5814902 Author: Emmi_
Subject: Liver kids?
Posted: 28 September 2012 at 10:05pm

Does anyone have a liver kid?  My youngest is booked in for a transplant next month...]]> Fri, 28 Sep 2012 22:05:34 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=42639&PID=5814902&title=liver-kids#5814902 <![CDATA[Parenting a child with special needs : Cystic Fibrosis]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=42628&PID=5814693&title=cystic-fibrosis#5814693 Author: scottishbaby
Subject: Cystic Fibrosis
Posted: 27 September 2012 at 9:35am

Hey, I am a young mum to be!

My partners niece has cystic fibrosis, both parents were carriers. My partner has also been tested and he is a carrier too.

My partners niece is living life every day to the full, she has a gorgeous little boy, has just bought her first house and is due to be married in December, she has a great outlook in life and is always happy! Life can be tough and certain conditions can make it difficult but she deals with it in the best way she can for her. September's weather in Australia affects her severly so she leaves for the month! She spent a month in Thailand with her family seeing the sights and relaxing! Why not i say!

]]> Thu, 27 Sep 2012 09:35:12 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=42628&PID=5814693&title=cystic-fibrosis#5814693 <![CDATA[Parenting a child with special needs : Cystic Fibrosis]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=42628&PID=5814675&title=cystic-fibrosis#5814675 Author: Guest_62510
Subject: Cystic Fibrosis
Posted: 27 September 2012 at 12:17am

Hi Guys, Im a young mum to a beautiful baby girl 3 months of age..

I was wondering if anyone else out there has a child with cystic fibrosis? ]]> Thu, 27 Sep 2012 00:17:59 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=42628&PID=5814675&title=cystic-fibrosis#5814675 <![CDATA[Parenting a child with special needs : A new board!]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5811098&title=a-new-board#5811098 Author: AuzzyMum
Subject: A new board!
Posted: 26 August 2012 at 10:40am

Thanks Mamaofboys.
Yes my little man is going to break some hearts. He is a charmer when it comes to older ladies. Lol.
It's good to be told it's ok to crumble. I do so much research and running around that I feel like a robot most of the time. It gives me the will to get things done.
We have had no extra help or funding for Aleksei at school.
He doesn't qualify for ORS but might if the Autism screen comes back pos. Yes it would be nice to have answers.
I'm sure that once he settles into school I will be able to take a little time for me. Then I might get to nest as I missed out on that last time.

I use that webpage often. It was the easiest way to explain it to my family and friends without having to repeat myself 20 times.
It's also been great for looking at what will happen for Aleksei in the coming years.
]]> Sun, 26 Aug 2012 10:40:08 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5811098&title=a-new-board#5811098 <![CDATA[Parenting a child with special needs : A new board!]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5811045&title=a-new-board#5811045 Author: Mamaofboys
Subject: A new board!
Posted: 25 August 2012 at 3:01pm

Wow what a journey you have been on! You have done an amazing job, i can imagine how difficult it is for you. I'm glad to hear you have fam and friends there to support you it can be very isolating. Alexsei is such a cute name! I bet he's a cutie! I'm happy they are doing the autism test for you, its nice to have answers! I get tired of hearing from specialists and doctors that we can do the tests but its not going to change anything - i know that its just nice to have answers! Have you had any early intervention or do you have any help for him at school? Like ORS funding ? My sons school have bent over backwards to help him.

Sounds like you have been on the right track from day one- i hope though you take care of yourself, one of my sons specialists said to me that having a child with difficulties is like ongoing mourning, you have times where you do research and try to do so much to help then sometimes you just crumble and you need support and time out to have a break and be a person, and with no#2 on the way (congrats btw) you need to have lots of you time cos it just gets busier lol. I'm always here if you need to chat, i also looked at the link you sent its really interesting, i have heard of it but didnt know anything about it so thankyou for posting it!]]> Sat, 25 Aug 2012 15:01:37 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5811045&title=a-new-board#5811045 <![CDATA[Parenting a child with special needs : A new board!]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5811036&title=a-new-board#5811036 Author: AuzzyMum
Subject: A new board!
Posted: 25 August 2012 at 11:24am

Ok Story time. I hope.

Hi everyone I am Corrine and My sons name is Aleksei.
At birth we found Aleksei had only one ear. The other was just a small ear lobe.
DH was not with us for the birth (Away working) I had to deal with it on my own.
DH came home for good, when DS was 3, after finishing out his contract.
We had lots of trips back and forth to visit.
So after a lot of research and help from family we found out Aleksei had Microtia Atresia. I started teaching Aleksei Baby sign language from about 6 months.
At 1 and a half we were sent to Starship to see a couple of specialists and found it was one of many abnormalities that we could and couldn't see.
After many scans and test we found out Aleksei is lactose intolerant but he may not grow out of it as other children would. His Kidneys were under developed but that would not be a long term problem.
He also has no ear past the cochlear.
So for the next few years we battled with all the hospital visits with various infections and this and that.
At 2 I was told they would like to test Aleksei for Autism. They didn't as he was to young.
I home schooled Aleksei from the age if 2 until he started school a few weeks ago. He did go to Kindergarden for a few months but they didn't want to deal with him the way he needed so I pulled him out.
At the age of 5 Aleksei is now being tested for Autism and is at school. We have the surgery to get his hearing aid coming up soon and we are getting a head band unit in the mean time.
Oh I am 17 odd weeks pregnant with #2 also.

Mumaofboy did I cover everything? If not please let me know. lol.
]]> Sat, 25 Aug 2012 11:24:35 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5811036&title=a-new-board#5811036 <![CDATA[Parenting a child with special needs : A new board!]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5810803&title=a-new-board#5810803 Author: AuzzyMum
Subject: A new board!
Posted: 22 August 2012 at 10:11pm

Thank you Mumaofboys.
I'm not sure what to put in a story. Will try tomorrow.

DS is really excited about the thought of a baby.
But he is only really able to get into the technical side of it. He watches the developmental videos to see how the baby grows when the heart/blood starts to pump.
He loves it.

The Pead did say it is a long process for screening so I'm not sure it will be done before he is 7.
But we have surgery looming so I'm not fussed if it takes a bit longer so we can get one thing done at a time.

As for Microtia I have added the link to DS's specialist at the bottom. He works out of Starship and specialises in these kind of conditions.
For us it means DS has one working ear and one that didn't develop past the cochlear. No hole in his skull or anything. Just a little ear lobe on the outside.
The site explaines it a bit better than I can.
We are getting a Bone anchored hearing aid for DS in the next few months.
Happy to answer any questions as it is a very rare condition. I have not met anyone else or heard of any other cases. Would love to so DS didn't feel so different.

http://www.ear.co.nz/index.php/conditions/otitis-media-3]]> Wed, 22 Aug 2012 22:11:33 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5810803&title=a-new-board#5810803 <![CDATA[Parenting a child with special needs : A new board!]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5810799&title=a-new-board#5810799 Author: Mamaofboys
Subject: A new board!
Posted: 22 August 2012 at 9:42pm

Hi AUZZYMUM, Welcome! Starting school is huge hey, i was soooo incredibly nervous when my babe started school. Congrats on having number #2! hubby and i are trying for number 3 we've ummed about it for so long we just decided to do it anyway. I have to say with number 2 i was really apprehensive about Kanye and how he'd react to new baby, but actually he surprised me! he was so good, and it helped improved his patience so as much as i was afraid how it was going to affect Kanye it actually worked out for the better so fingers crossed for you that this is the case! As for autism screening they dont always do it until 7 as far as i know, kanye is 7 and they arent keen even now to do it its really frustrating. I don't know much about microtia atresia but id be happy to learn more and hear your story.]]> Wed, 22 Aug 2012 21:42:18 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5810799&title=a-new-board#5810799 <![CDATA[Parenting a child with special needs : A new board!]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5810741&title=a-new-board#5810741 Author: AuzzyMum
Subject: A new board!
Posted: 22 August 2012 at 3:11pm

Hello Everyone.
I'm not sure how many people use this thread but I wanted to pop in and say Hi.
DS has just turned 5 and his pead has agreed he needs to be screened for autism.
He also has Microtia Atresia (Only one working ear)
DS started school last week.
I'd love to chat with other mums that get SN problems.
I am 17weeks pregnant with #2 and the other mums are nice but don't really get it.
]]> Wed, 22 Aug 2012 15:11:34 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5810741&title=a-new-board#5810741 <![CDATA[Parenting a child with special needs : A new board!]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5809344&title=a-new-board#5809344 Author: susieq
Subject: A new board!
Posted: 11 August 2012 at 4:29pm

nice to see you back, my 26 year old special needs daughter is in Hamilton this weekend on a special needs camp for young adults 18 plus
]]> Sat, 11 Aug 2012 16:29:03 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5809344&title=a-new-board#5809344 <![CDATA[Parenting a child with special needs : A new board!]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5808833&title=a-new-board#5808833 Author: Mamaofboys
Subject: A new board!
Posted: 07 August 2012 at 1:53pm

Hi LADIES I'M BAAAACK!!!!

Well first welcome to all newcomers and hello from me!

We have been so busy this year and its gone so fast. Since my last super long post- we moved home last september after 3 months at my in laws to a beautiful wee flat, eqc more than repaired the fire and eq damage everything was replaced- even the loo. So we're all settled now and its so nice to have your own space!

Kanye has continued to go back and forth to the neurologists this year- i dread the amoount of meds tehy want to give him but they did diagnose his seizures (afte ri finally managed to catch a seizure on video) as myoclonic epilepsy but he pointed out that Kanye could possibly have all types of seizures and its possible the meds may never fully stop or prevent them only reduce so as hard as that was to hear i think i was already thinking that and it was just a confirmation for me.

We kind of inherited a cat, the neighbours cat spends all its time here, its always here we actually called the owner and said your cat is always here, when we mentioned that since the cat has been here Kanye is soooo much calmer and she seemed happy that the cat was here. I find it interesting how much animals sense about kids like kanye- my uncle came down at christmas with their boxer dog and instead of being a jumpy puppy it sat with Kanye all the time and didn't bark or lick him and when he had a seizure it barked, my uncle was blown away as he hadn;t taught his dog to do that.

Anyways Other news Kanye got his very high needs Orrs!!!!! Finally! We also got a specialist teacher from Ferndale coming in twice a a week so he has more one to one now.

Kanye had surgery last friday for cautery of his nose- he has massive nosebleeds and my gp cauterizing it hasnt worked so they burned the blood vessel under anaesthetic.
My gp also put Kanye on clonazepam a few weeks ago as he started waking at about 1-2 am and just staying awake, we tried all techniques and strategies to get him to go back to sleep on his own but in the end we were all so tired clonazepam was our only answer and it works! He stays asleep all night although some nights he'll get into our bed he sleeps and thats all i care about!]]> Tue, 07 Aug 2012 13:53:13 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5808833&title=a-new-board#5808833 <![CDATA[Parenting a child with special needs : Heart Children roll call]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5807301&title=heart-children-roll-call#5807301 Author: Nikki
Subject: Heart Children roll call
Posted: 25 July 2012 at 8:49pm

Sure, send me a friend request and I will add you.]]> Wed, 25 Jul 2012 20:49:21 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5807301&title=heart-children-roll-call#5807301 <![CDATA[Parenting a child with special needs : A new board!]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5806993&title=a-new-board#5806993 Author: Mamaofboys
Subject: A new board!
Posted: 23 July 2012 at 3:26pm

Hi Ladies will post again very soon sorry its been so long we haven't had a great run of things this year and it seems it never stops!]]> Mon, 23 Jul 2012 15:26:54 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5806993&title=a-new-board#5806993 <![CDATA[Parenting a child with special needs : A new board!]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5806982&title=a-new-board#5806982 Author: AuzzyMum
Subject: A new board!
Posted: 23 July 2012 at 2:37pm

Hi everyone.
I am the proud mother of a special needs son.
My nearly 5yr old son has Microtia Atrasia. He was born with 1 ear.

I know that compared to all of the mums on here we are not high needs. I feel like an imposer saying I have a special needs son when all of you have so much more to deal with than I ever will.
But in saying that I have been through some of the things you have described.
I mourned the loss of my sons life. The things he will never do or hear.

I hope you all know how much you inspire other mums like me. I could not hope to be half as strong as you are.]]> Mon, 23 Jul 2012 14:37:33 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700&PID=5806982&title=a-new-board#5806982 <![CDATA[Parenting a child with special needs : Heart Children roll call]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806972&title=heart-children-roll-call#5806972 Author: worm28
Subject: Heart Children roll call
Posted: 23 July 2012 at 1:57pm

hi,
could i be added to the group please, my girl has a asd]]> Mon, 23 Jul 2012 13:57:10 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806972&title=heart-children-roll-call#5806972 <![CDATA[Parenting a child with special needs : Heart Children roll call]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806904&title=heart-children-roll-call#5806904 Author: Nikki
Subject: Heart Children roll call
Posted: 22 July 2012 at 10:02pm

And Amy :)]]> Sun, 22 Jul 2012 22:02:17 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806904&title=heart-children-roll-call#5806904 <![CDATA[Parenting a child with special needs : Heart Children roll call]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806903&title=heart-children-roll-call#5806903 Author: aims_one
Subject: Heart Children roll call
Posted: 22 July 2012 at 10:00pm

Cheers Nikki. Request done.
]]> Sun, 22 Jul 2012 22:00:57 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806903&title=heart-children-roll-call#5806903 <![CDATA[Parenting a child with special needs : Heart Children roll call]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806901&title=heart-children-roll-call#5806901 Author: Nikki
Subject: Heart Children roll call
Posted: 22 July 2012 at 9:54pm

Added you Sarah :)]]> Sun, 22 Jul 2012 21:54:05 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806901&title=heart-children-roll-call#5806901 <![CDATA[Parenting a child with special needs : Heart Children roll call]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806899&title=heart-children-roll-call#5806899 Author: Nikki
Subject: Heart Children roll call
Posted: 22 July 2012 at 9:48pm

Yep, send me a friend request and I can add you (you need to be friends with someone on the page for them to add you).

Assuming you're Sarah dear_albie? ]]> Sun, 22 Jul 2012 21:48:29 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806899&title=heart-children-roll-call#5806899 <![CDATA[Parenting a child with special needs : Heart Children roll call]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806884&title=heart-children-roll-call#5806884 Author: aims_one
Subject: Heart Children roll call
Posted: 22 July 2012 at 8:32pm

Nikki - would you be able to tell me the facebook page too?

Thanks]]> Sun, 22 Jul 2012 20:32:26 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806884&title=heart-children-roll-call#5806884 <![CDATA[Parenting a child with special needs : Heart Children roll call]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806881&title=heart-children-roll-call#5806881 Author: Nikki
Subject: Heart Children roll call
Posted: 22 July 2012 at 8:22pm

Hi dear_albie .... are you on facebook? We have a group on there now where most of us post, so if you want to be added add me as a friend and I'll add you to the group( Nikki Davy )
And may be best to send a message so I know its you!]]> Sun, 22 Jul 2012 20:22:52 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806881&title=heart-children-roll-call#5806881 <![CDATA[Parenting a child with special needs : oral adversion]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=41768&PID=5806722&title=oral-adversion#5806722 Author: aims_one
Subject: oral adversion
Posted: 21 July 2012 at 3:34am

Have you checked out the heart children roll call topic? Might be worth posting there so others with kids with heart conditions see your post.]]> Sat, 21 Jul 2012 03:34:03 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=41768&PID=5806722&title=oral-adversion#5806722 <![CDATA[Parenting a child with special needs : Heart Children roll call]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806699&title=heart-children-roll-call#5806699 Author: dear_albie
Subject: Heart Children roll call
Posted: 20 July 2012 at 9:03pm

The operation has been put off again - the third time. Hard work this waiting as I really feel like our life is on hold till we get on the other side of it. Do any of you keep blogs of your lil' ones journey? Ours is http://mrwrigglesworth.wordpress.com
Anyone else due at Starship anytime soon? ]]> Fri, 20 Jul 2012 21:03:01 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5806699&title=heart-children-roll-call#5806699 <![CDATA[Parenting a child with special needs : Nystagmus]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=41617&PID=5806391&title=nystagmus#5806391 Author: kalias1
Subject: Nystagmus
Posted: 18 July 2012 at 8:03pm

Hi EleanorT,

It's nice to hear from someone else with a child with nystagmus.

Do my comments above sound similar to your boy when he was younger? I'm interested about him wearing sunglasses - when did you learn/realise he was getting headaches being outside?

How was he when he was learning to walk? apparently they can have trouble with depth perception, have you noticed that at all? I'm guessing that could mean troubles with steps and stairs?

I've got an adult friend with nystagmus and she now snowboards!

You say it started to affect him more when he was about 4&1/2; was there any change in the movement of his eyes - did they look worse/move more? Or was it just when he found and started using the null point/stable spot?

Have you dealt with Blennz previously? They might be able to provide assistance. Also have a look on the ministry of education website; there's info on there about additional resources - although hopefully his school will be aware of them too.]]> Wed, 18 Jul 2012 20:03:23 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=41617&PID=5806391&title=nystagmus#5806391 <![CDATA[Parenting a child with special needs : Nystagmus]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=41617&PID=5806163&title=nystagmus#5806163 Author: EleanorT
Subject: Nystagmus
Posted: 17 July 2012 at 2:00pm

Hi, I was just googling and came across this, I am not sure if you will get notified that I have commented though.

I have a 5 year old with Nystagmus and he is borderline Ocular Albino as well. He was picked up by plunket at about 3 months. It didnt seem to make too much difference until he was about 4, though he did trip up more than other kids and his behaviour can be a little interesting, probably out of frustration.

When he was 4 and a half it started having more effect. He was turning his head to look through his stable spot and started getting a sore neck and headaches. Just after he turned 5 we had his eyes operated on through his opthamologist to get the stable spot moved to straight ahead. I think this has worked, however he still need regular physio to sort out the neck pain, I am not sure whether this is residual for before the op or not.

He can more or less do anything other kids can do, he has to wear sunglasses outside all the time or he gets headaches, but he is good about this. He has very little spatial awreness, if he is looking forward to where he is going he will trip over strangers in front of him, but he is still little enough that people dont find this strange. He plays sport, but I am not sure this will be his forte - finding balls when you see in snapshots is difficult! Its finding the right active things for him will take sometime I think. He hasn't really worked out what he can do easily and whats harder for him yet. From what I have read of others it will come with time, for example most find riding a bike hard.

I was googling because although he is keeping up at school currently, as the books get longer, tracking is starting to become a problem. I am about to start working with the school to seek additional help, so I wanted to see what was available.   

Sorry - this is also an essay. Happy to chat though :)]]> Tue, 17 Jul 2012 14:00:11 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=41617&PID=5806163&title=nystagmus#5806163 <![CDATA[Parenting a child with special needs : Heart Children roll call]]> https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5805087&title=heart-children-roll-call#5805087 Author: dear_albie
Subject: Heart Children roll call
Posted: 07 July 2012 at 2:41pm

Hi there NZ Heart Mamas

STOKED to find this group - have found quite a few heart mums groups on Facebook, but they all seem to be based in the States. Its nice to have a group who know all about Starship, PICU and the joys of 23B!
Albie is 16 months and has TGA, PS, SPS and a VSD. He had a BT shunt placed last April and is due for a Rastelli operation the week after next. Its open heart. Gulp.
Is there anyone here who has had a kid have a Rastelli or knows of anyone? I have found one family in Hamilton and its so nice to know what their experience was. I know everyone is different, but still nice to know others have tread our path before us.
]]> Sat, 07 Jul 2012 14:41:41 +0000 https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=31320&PID=5805087&title=heart-children-roll-call#5805087