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Georgiegirl View Drop Down
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Joined: 04 June 2009
Location: Ramarama Auckland
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Georgiegirl Quote  Post ReplyReply Direct Link To This Post Posted: 17 December 2010 at 10:02pm
Hi everyone,

Just a quick note to say I'm still here, I must make an effort to look at this forum more as there is nothing quite like knowing you all are out there understanding how I feel.

Ava has been really giggly lately, I love listening to her laugh.... I have NO idea what is so funny but still her laughter is so infectious!

Merry Christmas everyone.....

:-) Erin



TTC#2
8th round of clomid 100mg
1 failed IUI.
Waiting for IVF now.
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Georgiegirl View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Georgiegirl Quote  Post ReplyReply Direct Link To This Post Posted: 26 January 2011 at 10:30pm
Happy New Year Everyone!
How bizzare I just realised it is 26/01/11 and it is the first time I have actually said it.

What a start to the year..... we had Ava's 1st birthday party.... talk about daunting.... what was I thinking????? after being a total hermit for her first 12 months we decide to have a huge bash.... 70 people in all......
I was petrified... like I said for the first 12 months I have bearly seen anyone.
All I can say is it went amazingly well and I am soooooo glad it is OVER!!!!
I have to say that the last couple of days after the party have been really really hard. I guess I spent so long thinking about getting through the first year... all of a sudden I am now thinking about the future. What a scary thought!
So needless to say I have been a total wreck.... I can't seem to stop crying, I know that the sun will continue to rise every morning but for now I am just feeling really lost and sad.
This week Ava's therapist bought us information on Bathing systems and wheel chairs.... You know I never thought I would have to pick a wheel chair for my baby! its just another thing to get my head around.... I'm sitting here with tears in my eyes.... I feel like I'm writing a diary in a way.... its just good to get the thoughts out of my head.
Today was a big day too. Ava had her first EEG. There is a high percentage of Pallister Killian kiddies that get Seizures.... thank goodness the EEG didn't show up any signs. But we have been warned that they can start at any time.

Question: I have been thinking lately that it would be good to maybe get some counselling..... have any of you done this? did it help? do you have any recommendations.... LOL don't panic I'm not in trouble or anything.... I am just at that stage that I really think talking to someone trained would be really helpful.

Well I have rambled on enough.

I figure that if I keep writing here more people will join in. But if you are reading thing and not ready to join in..... I am so glad you are reading.... it took me a long time to get to the stage that I could put my thoughts down without uncontrollable sobbing.
Kia Kaha....

Love

Erin



TTC#2
8th round of clomid 100mg
1 failed IUI.
Waiting for IVF now.
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aimeejoy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote aimeejoy Quote  Post ReplyReply Direct Link To This Post Posted: 30 January 2011 at 5:05pm
Hi Erin

Didn't want to read and run :) Just wanted to say that my daughter is getting a wheelchair very soon. We had lots of trials with it last year as she is getting an electric one that she can drive a bit herself. Greer is 3 in two weeks, and has a spinal cord injury due to surgeries to remove a tumour. She has just finished (two days ago) a six week course of radiotherapy and we have a few more months of chemo to go.

We are almost 2 years since diagnosis, and I have found that when everything settles down to some kind of 'normal' I get quite emotional and down. I was thinking about talking to someone a few months ago but then we found out she needed more treatment so went straight back into coping mode. We have a psych oncology service within our DHB so will probably hook into that at some stage. Do you have a social worker through the hospital that would help you find something appropriate? Or if you get on with your therapist maybe they may have some ideas? I am a physiotherapist myself which is great at times as I can use my skills to help Greer a lot, but it can be hard to know too much at times to.

Oh and I am a bit of a hermit too. I hate going to the supermarket (we live in a small town so I am always getting stopped to ask how things are which is nice I suppose, but hard) and try to only socialise with close friends and family. I just get over explaining and updating other people.

Anyway, just wanted to let you know you not alone
Aimee

Hannah 22/10/05
Greer 11/02/08
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KcP View Drop Down
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Joined: 28 March 2011
Location: Auckland, New Zealand
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KcP Quote  Post ReplyReply Direct Link To This Post Posted: 28 March 2011 at 5:53pm
HI, just wanted to introduce myself. Ive been on these boards before but this is a new phase. I have a 6 year old step son with Autism and DP and I are TTC baby number one for us.

Anyway, Hi to you all! Hope to get to know some of you soon
Small family of three
TTC #1 4 years

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Georgiegirl View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Georgiegirl Quote  Post ReplyReply Direct Link To This Post Posted: 11 April 2011 at 6:12pm
Hi KcM

Welcome to our group.
Congratulations on TTC.... DH and are are trying too. And sheesh it is super scary. But I just can't wait to have a little baby in my arms again.
I'm nervous that if it takes too much longer it is going to be impossible to get out of the house. I just hope that our little girl is still small enough to go in a double pram. As trying to manage a pram and a wheelchair???? the mind boggles.
Isn't Fertility friend great! I've only just started charting and I'm trying to not be too obsessive compulsive about it!
Hi Aimee, thanks for your message I haven't been here for a while, so sorry for not replying... I've been getting counselling, and it is wonderful... but I think that you will do it when you are ready, till then it could just be another to do on your list. How is Greer doing? ( I LOVE THAT NAME!). Oh going out in a small town must be hard.. I just love that Auckland is so big and I rarely come across people I know.

I'm so glad that we have this forum. No one understand the fear I have of trying to conceive better than you all.

:-)



TTC#2
8th round of clomid 100mg
1 failed IUI.
Waiting for IVF now.
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MauMama View Drop Down
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Joined: 26 June 2011
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MauMama Quote  Post ReplyReply Direct Link To This Post Posted: 26 June 2011 at 5:08pm
Hi Girls,

I'm new to the site. My name is Jen.

My daughter was just diagnosed with Asperger's Syndrome and Anxiety along with some sensory issues.

We had had a horror year, already changed schools once. Might be changing again.

We live in Wellington and have 2 cats.

My husband was also dx with Aspergers as an adult in his 30s. So it's been a crazy, complex and never boring year!!

I have had recurrent miscarriages and had a loss earlier this year. We have not been ttc since we lost twins in 07.

I want another child but I struggle with how to add one to our unit.

Crazy Cat Lady + Computer Geek
Mama to Her (Asperger, anxiety)
Big Boy
Tiger Cat
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Georgiegirl View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Georgiegirl Quote  Post ReplyReply Direct Link To This Post Posted: 03 August 2011 at 9:05pm
Sometimes when she's sleeping
I can see in my mind's eye
the little girl I thought I had,
the one who said good-bye.

Sometimes when she's sleeping
hands folded by her cheek
I close my eyes and see before me
a child who can speak.

Sometimes when she's sleeping
she seems so whole and well
I can't believe she won't awaken
with dreams of which to tell.

Sometimes when she's sleeping
and the tears in my eyes overflow,
I steal what kisses I can in the dark
and wonder what joys she will know.

Sometimes when she's sleeping
and my eyes ache with tears unshed,
I pray she'll always be full of peace
as she slumbers in her bed.
WISHES IN THE DARK

Sometimes when she's sleeping
I can almost hear her say
"I love you, Mom, with my heart
and my soul, each and every day".

But always when she's sleeping
I am full of pride
at the miracle that is my daughter
and the perfection that is inside.

by Lisa Esmond


I found this poem... it was so close to home for me that I just had to share it.
I really hope everyone is doing ok.



TTC#2
8th round of clomid 100mg
1 failed IUI.
Waiting for IVF now.
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Mamaofboys View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mamaofboys Quote  Post ReplyReply Direct Link To This Post Posted: 09 August 2011 at 10:49pm
Hello Ladies have been reading everyone's post. Its a huge breath of fresh air to find some people in similar circumstances. My son Kanye is 6 he has autism,epilepsy,sensory processing disorder, developmental delay and reynaurds condition. He is a beautiful boy with big smiles for me. Having a hard time with him at the moment after the earthquake in june we had to( still are) stay with my in laws as our wee flat caught fire and am waiting on it to be fixed. He's in mainstream school and loves it he has a fabulous teacher aid which helps me feel ok that he's at school. The last bayleys scale assesment at 5 put him at a mental age of around 2 1/2- 3 years.On a daily basis he has his epilepsy meds twice, probiotics,cod liver oil, magnesium supplement and a multi, i use a lot of herbal stuff like arnica for him im lucky my in laws are well trained and owned a health food store once upon a time tehy are mega wise and always have an awesome answer or alternative for me to help him.He is on a gf diet i haven fully excluded cheese or yoghurt as it doesnt affect him so much i think its the processedness of it, i do however not let him have any lollies,biscuits,choc anything sugar filled or anything that has artificial preservatives,colours, sweeteners etc im mega strict lucky for me though he doesn't seem to care and he'll ea anything i give him. currently we're trying to get his epilepsy meds correct so its been a little back and forth. Some days i really tire of all his therapists, and there have been times when ive let loose at them, fo rthe most part theyve been wonderful.I do a lot of research and i am currently studying full time at home with the university of canterbury doing certificate in learning support moving to dip in teaching and supporting people with disabilities next year, alot of it it stuff ive picked up over the years but many therapists seem to think i don't know anything haha so wrong. I have a lot of mourning times with my babe ill be really peppy and upbeat and yeah we can do this but then there are days like today where i just cry, i feel a huge loss, i feel guilty and i grieve and its hard for others to understand that you can grieve for someone who is still alive. every day is hard and i try to make it positive, unfortunately when he doesnt cope he bites hits spits and will fight or attack me or my 2 year old, my husband fears for me he's such s strong kid ive been considering learning a martial art to defend myself and restrain him when need be. I don;t know what the future will hold for him im afraid to think about it. I love him and he'll always be my baby and i know deep down that he does love me i just wish he could show it would make it feel like everything i'm doing is not just in vain.Well that was longer than i was intending to type.
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Georgiegirl View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Georgiegirl Quote  Post ReplyReply Direct Link To This Post Posted: 10 August 2011 at 8:17am
Hi SithV, Welcome to our little forum... it sure does help to have people who understand. I love that we can rant and rave on here and there is no judgement, just understanding and community. I often wonder how on earth special needs families are coping in CHCH.... I hope you have someone looking after you, as well as you are caring for Kayne. ( LOVE THAT NAME!)
Keep us updated, I'd love to get to know you here. I find it really hard to talk to people about my little girl and as a result I seem to have become quite a recluse... This forum and the PKS network have been my sanity.

Anyway, W E L C O M E ... I'm glad you joined us.



TTC#2
8th round of clomid 100mg
1 failed IUI.
Waiting for IVF now.
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susieq View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote susieq Quote  Post ReplyReply Direct Link To This Post Posted: 11 August 2011 at 6:30pm
lurker,
Erin, hope you like the newsletters I send out for the East and South Auckland special needs support group
susie
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Georgiegirl View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Georgiegirl Quote  Post ReplyReply Direct Link To This Post Posted: 07 September 2011 at 8:11pm
Yes thanks Susie Q... I went along to Marlenes group 2 months ago. She is lovely and it was great to meet other Mums like me.

:-)

Erin



TTC#2
8th round of clomid 100mg
1 failed IUI.
Waiting for IVF now.
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ieat_MMs View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ieat_MMs Quote  Post ReplyReply Direct Link To This Post Posted: 13 September 2011 at 12:52pm
Hiya everyone,

My names Renee and im in chch, and recently been told our 2yr10mth old wee girl has Autism.

At first our early intervention team said she had a social delay and needed help with her speech etc, and also some sensory issues. That'd been monitoring her for awhile then our paediatrician diagnosed her with autism in August. But eveyone has been lovely, its just been really busy with all these different appts and phone calls. Fill bit like a robot as I keep having to repeat the same questions and say the same things over and over just to different people. But basically all we want(DH & I)at the moment that, is tips or some advice to help us help her.


I've read eveyone's post. And all i have to say is you sound lovely and very strong wonderful people.

Edited by ieat_MMs

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susieq View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote susieq Quote  Post ReplyReply Direct Link To This Post Posted: 14 September 2011 at 9:03am
lurker,
Erin,
when you are next at Marlene's group, can you let other Mums know about our group as the hospital therapists now know about our East and South Auckland Special needs group which cover from St Heliers through to Tuakau
Give all the Mums my email address so they can email me to get the newsletter.
Cheers Sue
susie
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susieq View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote susieq Quote  Post ReplyReply Direct Link To This Post Posted: 14 September 2011 at 9:05am
SixthV your 6 year old sounds just like my 25 year old daughter who has epilepsy, and developmental delay, she still loves barney and other childrens programmes at 25, are you in Auckland
susie
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KcP View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KcP Quote  Post ReplyReply Direct Link To This Post Posted: 02 January 2012 at 11:10pm
Hi again all I sorry I havnt been back in here since my last post but i tend to forget my password for this site and then I just kinda forget to join back in.. :)

This past year has been amazing yet difficult.. My stepson has made leaps and bounds in his ability to communicate (he's mostly non verbal) and we are really struggling with his selective eating and non-toiletting.. He attends a special needs school in Auckland, and I take my hat off to all the work they have done with him!

Anyway, ill try to hang out in here a bit more and hopefully make some more connections
Small family of three
TTC #1 4 years

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susieq View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote susieq Quote  Post ReplyReply Direct Link To This Post Posted: 08 January 2012 at 8:33am
KcP,
Nice to see you back in here, if yo would like a copy of our special needs newsletter that I do please let me know.
Which special needs school does your stepson go to, my daughter went to Sommerville Special school in Panmure for a three years.
I also get tickets for various plays and Christmas events through our special needs support group so if ever you want tickets let me know
susie
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KcP View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote KcP Quote  Post ReplyReply Direct Link To This Post Posted: 08 January 2012 at 10:32am
Hey! Izzy is at Sommerville, but we are hoping to move areas at the end of this year. We're just finding that there is no support for me in East/central auckland and although Iz's grandparents give us alot of support for him every week, I need more then that. We're hoping to move him to Oaklynn next year so I can be closer to my family, who all live in West Auckland

God, these school holidays are long, arent they??
Small family of three
TTC #1 4 years

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mum of 2 Quote  Post ReplyReply Direct Link To This Post Posted: 18 February 2012 at 10:38am
Thought I would say 'hello' to this group of amazing, strong Mums - I am a Speech-Language Therapist and I'd be happy to answer any questions anyone has.

Sarah
Mum of one

Edited by Kelz
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Post Options Post Options   Thanks (0) Thanks(0)   Quote AuzzyMum Quote  Post ReplyReply Direct Link To This Post 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.
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Mamaofboys View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Mamaofboys Quote  Post ReplyReply Direct Link To This Post 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!
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