A new board!
Printed From: OHbaby!
Category: Support
Forum Name: Parenting a child with special needs
Forum Description: A place for those parenting children with special needs to find support and share their thoughts
URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=20700
Printed Date: 21 November 2024 at 5:17pm
Software Version: Web Wiz Forums 12.05 - http://www.webwizforums.com
Topic: A new board!
Posted By: Maya
Subject: A new board!
Date Posted: 05 September 2008 at 8:24pm
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By request, a board especially for those parenting children with special needs. -------------  Maya Grace (28/02/03)
 (02/01/06)
The Gremlins:Sienna Marie & Mercedes Kailah (14/10/06)
Lil miss:Chiara Louise Chloe (09/07/08)
Her ladyship:Rosalia Sophie Anais (18/06/12)
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Replies:
Posted By: kiwigal
Date Posted: 05 September 2008 at 9:36pm
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Cool |
Posted By: Kels
Date Posted: 05 September 2008 at 11:12pm
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Awesome!! ------------- http://lilypie.com"> 
Busy mum to Miss 15yrs, Miss 10yrs and Master 4yrs |
Posted By: MalibuBarbie
Date Posted: 06 September 2008 at 9:23am
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Thanks Emma for this new board! My oldest son has recently been diagnosed with Duchenne's Muscular Dystrophy and there have been no other cases of this in the area where I live for 10 years. I look forward to chatting with other parents whose child/ren have this illness or who have children with another form of special needs and the challenges that you all face. Thanks once again!
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Posted By: Aquarius
Date Posted: 15 January 2009 at 9:39am
Hi to all...i am fairly new to this whole site and only found it as i am due for third baby around august this year....have a 14 yr old son, and a 8 yr old son who has autism. he has been diagnosed since the age of 2. He is a challenge but a real character and we love him dearly..would have to admit i am a little nervous about another baby. before we had him i never even considered the fact that we could have a child with special needs. we were young and healthy and i hadnt really heard much of autism. Now i am much more worldly and realise that anything is possible. i am a firm believer in that we were gifted him for a reason as i am sure other parents of special needs kids are too. We are of stronger mind and spirit and have the heads to cope. would love to hear more about your journey Kiwigal as he must be at school now..i am a few years ahead and would love to know if i can offer you any help and suggestions. my son is considered on the 'high functioning' end of the spectrum and attends mainstream..but boy i wish i knew then what i have learnt now!!! i am in chch having moved down from auck about a year ago...would love to hear back from you
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Posted By: susieq
Date Posted: 16 January 2009 at 4:36pm
| What are services for special needs children like in Christchurch compared to Auckland |
Posted By: Jo Girl
Date Posted: 21 February 2009 at 11:13am
Hi I have an almost 4yr old boy , Blake with Down Syndrome. We are tackling Toilet Training at the moment and I would love to hear from any one who has been through this with the same disablity as Blake. He doesn't speak and so cannot tell me he needs to "go". However just in the last week everytime I have sat him on the potty he has wee'd. So we are getting somewhere but it is very frustrating!!!! Any ideas would be great
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Posted By: ItchyFeet
Date Posted: 21 February 2009 at 12:40pm
| Would sign language be of any use? (sorry, I don't have experience of this, but I've seen it applied with younger children before their vocals have developed) |
Posted By: fire_engine
Date Posted: 21 February 2009 at 2:42pm
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Jo, are you linked in with any child development service? They would be able to help out with this. I think Makaton sign is sometimes used with kids with Downs Syndrome - your local speech therapist would be be able to help here. ------------- Mum to two wee boys |
Posted By: drumstx
Date Posted: 12 August 2009 at 1:51pm
hi all, i have three children, cam is six, amelia is three and jack is 15months. Jack is in hospital tomorrow for biopsys for his bowel, and to look at his chest, throat and tum for any abnormalitys. He has neutropenia and having groms and adeniods out. for sleep apnia and is deaf we think from fluid in his ear. He doent have any food and only neocate advanced, bottle and nasal gastric tube as he seems to not be able to absorb protein,? unsure of this yet. Does anyone have or dealt with any of these things. We are very much in no mans land and very alone, only doctors and care nurses seem to understand jack and have not been able to find anyone who has similar things happening.. i dont even know if i have written in the right place. thanx caro
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Posted By: Surreal3
Date Posted: 28 August 2009 at 4:21pm
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Hi Caro
How did Jack get on with the biopsy. I dont know about neutropenia but found another chat where a Mum says her little one has this also see below. good luck www.treasures.co.nz/Default.aspx?DN=499763,547,523,1... |
Posted By: Larrl
Date Posted: 15 February 2010 at 9:13am
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Hi I have an 11 year old son with tourettes syndrome any one else out there with a child with tourettes?
http://lilypie.com">  
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Posted By: Georgiegirl
Date Posted: 23 September 2010 at 11:58am
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Hi,
Thank you Maya for starting this forum, I find it really hard to talk to people about my little girl, so I tend to stay home. I guess in time I'll be braver but for now, being about to comunicate via the internet is a lifesaver for me! My little Ava was born in Jan and just didn't seem right.... she looked a little odd but was doing ok as far as growing and feeding went. At 6 weeks I went along to an appointment only to be told we needed to check her Chromosomes, it was devastating..... we have a long wait whilst the results came in.... only to be relieved when the results came back normal. This relief was short lived though as it was becoming more and more obvious that there was something clearly wrong with our girl. To cut a very long story short, at the age of 4mths Ava was Diagnosed with a very rare chromosome disorder called Pallister Killians Syndrome. www.pkskids.net There are less than 300 worldwide. Amazingly there is a little boy in Whangarei, whom we have met. Basically we do not know what to expect from our little girl but so far she has global delays, and at the age of 8mths she is more like a 8 week old. We are doing ok... but I find it so hard emotionally, our days are filled with therapy, feeding and housework. She is thankfully a happy girl. I feel like I am in a constant state of mourning. Every stage that our coffee group goes through is like a knife in my heart as a think about the life that my little girl will never have and my dreams for her that will never be. I promise I'll try to be happier on this site in the future!!!! Or none of you will ever want to talk to me! I guess I just get really emotional whenever I think about the reality of my little Angel. One of the daily challenges I have with Ava is constipation... So I am eager to hear of any solutions any of you may have found. Constipation is common with Babies and children with Hypotonia ( low muscle tone). If there as anyone out there in Auckland who wants to at some stage meet up.... I really like the idea of meeting other Mums who understand. One day at a time. Sorry for the book.... :-) Erin and Ava ------------- http://www.fertilityfriend.com/home/279456"> 
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: james
Date Posted: 23 September 2010 at 3:14pm
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hi there Georgiegirl
all though i can,t comperend what your wee girl is going thur i can understand the pain and mouring you are going thur at the moment. My wee boy has dyspraxia which effects his learning ,moter skills its horrable. All i could think for so long was what my poor boy has to live with. Epesas dyspraxia is genentic and since i have it i have passd this onto my son Big hugs if you would like to pm for a chat big hugs ------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a> |
Posted By: Georgiegirl
Date Posted: 24 September 2010 at 9:06am
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HI Drumstx,
I just found this group on Facebook "Neutropenia Support" there are 412 members. You have probably seen it already. I have found alot of friendship and support online via the PKS Kids website and now have 30 PKS Mums as friends on Facebook... it has been an incredible support to me. I hope you too can find this type of support... It still doesn't stop you from feeling completely alone.... but at least it makes me feel like others understand. Erin  ------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: drumstx
Date Posted: 24 September 2010 at 12:02pm
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thanx!! i have found the link that was really nice to find that for me
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Posted By: Georgiegirl
Date Posted: 01 October 2010 at 10:40pm
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Just thought I'd log on and see how everyone is doing?
Its been quiet on this forum. Did I scare everyone off? LOL hope not. Ava has been doing well this week. And I have managed to get a couple of really good sleeps WOW I feel like a new woman! Well thats Hi from me! ------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: drumstx
Date Posted: 02 October 2010 at 6:59am
hi gergie, no scaring me! we have been in hosp with chicken pox of all things. crazy bug that it is, kinda peeed at the doc, was ment to be immunized and never got the vacczine wot a big hassle. gggrrrrr! hope all is going ok for you and yours
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Posted By: Georgiegirl
Date Posted: 14 October 2010 at 8:58am
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Hi Drumstx,
You poor thing.... How is Jack doing now? all over the chicken pox? LOL I know what you mean about Doctors I am currently trying to change my Dr... last time I went in trying to find help and solutions for Ava's constipation..... and she told me it wouldn't be a problem for much longer as Ava would be moving around alot soon! I don't think she even read the info I gave her on PKS... Ava may never move around. I should have just burst into tears in front of her! That may have opened her eyes a little. Breath...... rant over! Generally we are doing well... I'm soooo glad that the weather is coming right as I have been so house bound all winter! I'm really enjoying getting out and about with the pram. I hope everyone is doing ok... ------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: drumstx
Date Posted: 15 October 2010 at 10:48pm
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hey there, wasnt ignoring you ... have been away at ronald mcdonald family retreat in rotorua is amazing! for a week was so very cool!
anyways georgie i too have changed docs for the same reasons was driving me nutty! hope this one will listen to you xo |
Posted By: Georgiegirl
Date Posted: 17 December 2010 at 10:02pm
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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 ------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: Georgiegirl
Date Posted: 26 January 2011 at 10:30pm
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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 ------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: aimeejoy
Date Posted: 30 January 2011 at 5:05pm
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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 |
Posted By: KcP
Date Posted: 28 March 2011 at 5:53pm
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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 http://alterna-tickers.com"> 
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Posted By: Georgiegirl
Date Posted: 11 April 2011 at 6:12pm
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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. :-) ------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: MauMama
Date Posted: 26 June 2011 at 5:08pm
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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 |
Posted By: Georgiegirl
Date Posted: 03 August 2011 at 9:05pm
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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. ------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: Mamaofboys
Date 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. |
Posted By: Georgiegirl
Date Posted: 10 August 2011 at 8:17am
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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. ------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: susieq
Date Posted: 11 August 2011 at 6:30pm
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lurker,
Erin, hope you like the newsletters I send out for the East and South Auckland special needs support group ------------- susie |
Posted By: Georgiegirl
Date Posted: 07 September 2011 at 8:11pm
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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 ------------- http://www.fertilityfriend.com/home/279456">
TTC#2 8th round of clomid 100mg 1 failed IUI. Waiting for IVF now. |
Posted By: ieat_MMs
Date Posted: 13 September 2011 at 12:52pm
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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. ------------- 
http://lilypie.com">  
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Posted By: susieq
Date Posted: 14 September 2011 at 9:03am
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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 |
Posted By: susieq
Date Posted: 14 September 2011 at 9:05am
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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 |
Posted By: KcP
Date Posted: 02 January 2012 at 11:10pm
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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 http://alterna-tickers.com">
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Posted By: susieq
Date Posted: 08 January 2012 at 8:33am
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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 |
Posted By: KcP
Date Posted: 08 January 2012 at 10:32am
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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 http://alterna-tickers.com">
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Posted By: Mum of 2
Date Posted: 18 February 2012 at 10:38am
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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 |
Posted By: AuzzyMum
Date Posted: 23 July 2012 at 2:37pm
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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. |
Posted By: Mamaofboys
Date 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! |
Posted By: Mamaofboys
Date Posted: 07 August 2012 at 1:53pm
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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! |
Posted By: susieq
Date Posted: 11 August 2012 at 4:29pm
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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
------------- susie |
Posted By: AuzzyMum
Date Posted: 22 August 2012 at 3:11pm
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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. |
Posted By: Mamaofboys
Date 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. |
Posted By: AuzzyMum
Date Posted: 22 August 2012 at 10:11pm
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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 |
Posted By: AuzzyMum
Date Posted: 25 August 2012 at 11:24am
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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. |
Posted By: Mamaofboys
Date Posted: 25 August 2012 at 3:01pm
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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! |
Posted By: AuzzyMum
Date Posted: 26 August 2012 at 10:40am
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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. |