Special Needs Kids
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Category: General Chat
Forum Name: General Chat
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URL: https://www.ohbaby.co.nz/forum/forum_posts.asp?TID=1657
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Topic: Special Needs Kids
Posted By: jdjzmum
Subject: Special Needs Kids
Date Posted: 28 February 2006 at 2:28pm
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Hi, I was just wondering if there were any parents on this fab site with kids who have special needs or disabilites. I have a son who has cerebral palsy, has just been diagnosed again with epilepsy and he has a feeding tube in.
Would love to exchange stories and ideas with other parents. Gaye |
Replies:
Posted By: k&jsmum
Date Posted: 28 February 2006 at 3:48pm
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hi gaye I dont and not sure on the other ladies however I have a friend whose daughter was born 4 days before my boys. We met in the neonat unit in palmy and her girl has cerebal palsy and also epilepsy although she doesnt need a feeding tube.
How old is your son? ------------- Marlene Keegan ~ 14 October 2003 Jaidyn ~ 14 October 2003 |
Posted By: jdjzmum
Date Posted: 28 February 2006 at 4:11pm
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Hey Marlene
My son Daniel is now 11yrs and he was born in Lower HUtt Hospital before spending a week in NNU at Wellington Hospital. How old is ur friends daughter? Gaye |
Posted By: k&jsmum
Date Posted: 28 February 2006 at 8:02pm
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she is coming up 2.5 years old and her CP is described as mild to moderate and my friend has been told her girl prob wont walk. I really feel for her and bub with all the tests she has to have etc but in saying that my friend is really positive and I try to help whenever I hear anything about CP I pass the info onto her. Her girl is such a happy wee thing and my boys love her to bits. Hope all is going well with your boy ------------- Marlene Keegan ~ 14 October 2003 Jaidyn ~ 14 October 2003 |
Posted By: aimeejoy
Date Posted: 28 February 2006 at 8:53pm
Hi Gaye, I dont have any kids with special needs either but I have done a bit of work with CP kiddies (I am a physio). What things is Daniel able to do and have trouble with? What kind of CP? Hope you dont mind my questions, but I so loved working with them and would love to do it again sometime.  ------------- Aimee Hannah 22/10/05 Greer 11/02/08 |
Posted By: deharn
Date Posted: 28 February 2006 at 10:34pm
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Hi Gaye
I too have worked with people with disabilities for about 15 years and have remained good friends with many of the families and their children. I am always so humbled by the love and dedication of a parent who has a child with a disability. I often have to stop myself and take a step back when I complain at having to chase after my bub constantly and pick up after him etc. Is Daniel integrated into mainstream school? I am an Aussie so am not sure of the system here in NZ in regards to school. Do you have other children Gaye and a support network to help you out? I assume Daniel has moderate to severe level of CP seeing you are feeding via a tube? Cheers Gaye
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Posted By: jdjzmum
Date Posted: 01 March 2006 at 9:09am
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Hi Deharn and Aimee
Thank you so much for your comments and your care and concern. I have another son, Jack, he is 17mths and perfectly normal. Daniel had spastic quadriplegia (oops)moderate to severe cp, he had a massive bleed to his right temple when he was born so has increased muscle tone on the right side. He can talk, uses a walker to get around, is still in incontenince nappies although we are trying to toilet train him. He had failure to thrive when he was 6yrs old so the decision to do a gastrostomy was decided but the nissan was thrown in at the last minute. Bad move, cos it went horribly wrong!!! We have support but alot of the systems we have in place, let us down and fail us. He is currently in a satellite class within a mainstream intermediate this year which is where we were aiming for 4 years ago and were told that our expectations were too unrealistic and too high. I could go on for hours about Daniel, but I am willing to share more if you want to keep in touch by email. Lots of thanks again Gaye |
Posted By: aimeejoy
Date Posted: 01 March 2006 at 10:38am
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Gaye, what school does Daniel go to? ------------- Aimee Hannah 22/10/05 Greer 11/02/08 |
Posted By: Maya
Date Posted: 01 March 2006 at 2:12pm
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I too don't have a special needs child, but my brother has low-grade/mild cerebral palsy as a result of a brain injury at birth (Mums waters broke at 34 weeks and she was induced but had an allergic reaction to the oxytocin and John was born within 45 mins of the first dose. He was also incorrectly diagnosed with Cystic Fibrosis - they discovered he didn't have it when he was two and think that his prematurity is why his pancreas and lung function appeared to be impaired)
My sister is also epileptic, but took Epilim (sp) for 2 years straight and now hasn't had a seizure for more than 10 years. She still has to be careful with strobe lights etc. and can't do high stress/adrenalin things like diving, parachuting etc. but for the most part has a normal life. -------------  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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Posted By: jdjzmum
Date Posted: 01 March 2006 at 4:52pm
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Aimee
Daniel goes to Papatoetoe South Intermediate in Auckland. He is under the Mount Richmond Special School umbrella though. Gaye |
Posted By: caitlynsmygirl
Date Posted: 03 March 2006 at 11:48pm
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I dont know what its like to be the parent of a special needs child but i do know what its like to be the sister, my younger sister Kate has developmental delay-basically she was 20 last sunday (my baby sister is growing up) but her maturity level is of a 4year old-she cant shower by herself, speak clearly, still has accidents etc and she also has a touch of autism, and has had epilepsy since she was 2.
Its not easy for parents but its also not easy for ur other kids, i will say this tho-these specialneeds kids really are "special" they have an innocence to them and truly know the meaning of unconditional love well after most of us have forgotten it. Btw my mum is part of a special needs support group in our area (east auckland) perhaps i could ask her where ur one is? |
Posted By: jdjzmum
Date Posted: 04 March 2006 at 3:32pm
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Hi Kelly
Wow, you'd know first hand then wat its like to grow up with a special needs sibling. Well done to you though as you have stood by your sister. Hey I go out Auckland East regularly, if you mum can't find one out in the South, I can easily travel her direction. Take care, would like to keep in touch. Gaye |
Posted By: caitlynsmygirl
Date Posted: 05 March 2006 at 2:05am
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i will get my mum to pm u if u like, they are very welcoming at her special needs group and they are also involved with a company called janet mcveagh recreate-its run by Kerrie Ohara( sadly janet died last year) and she and her staff are just awesome! they do swimming lessons take them on outings organise carer support and for the older ones (ie my sis) have sleepovers etc...and for the mums they have mothers weekends-where the mums take a well earned break and spend a weekend with friends in the same boat getting pampered and who knows what else (my mum goes all coy when i ask lol)
From what ive seen its made my mums life alot easier-actually i'll just pm u with my number if ur interested and just ask for sue-shed be happy to hear from u |
Posted By: Donna.I
Date Posted: 05 March 2006 at 8:32am
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Hi, I have all five special needs kids. Am a single mum too (the oldest two have left home now tho). Of my children I have: Carl 19 - Aspergers Syndrome, Ehlers danlos Syndrome - Gastric reflux/Lax joints Amanda 17 - Ehlers danlos Syndrome - Gastric reflux/Lax joints Logan 11 - Aspergers Syndrome, Ehlers danlos Syndrome - Gastric reflux/fundo/Lax joints Hannah-Rose 7 - Aspergers Syndrome, Ehlers danlos Syndrome - Gastric reflux/fundo/Lax joints Marshall 4 - Aspergers Syndrome, Ehlers danlos Syndrome - Gastric reflux/fundo/Lax joints The Aspergers was a recent diagnosis. Both Hannah's and Marshall's fundo's had to be redone as they came undone adn in Hannah a hiatus hernis formed, this is because of the Ehlers Danlos which we had no idea of at the time (diagnoisis was late last year). I live in Invers, so help is minimal. ------------- Donna Ingram Co-ordinator Gastric Reflux Aide mailto:info@gastricreflux.org - info@gastricreflux.org http://www.gastricreflux.org - www.gastricreflux.org |
Posted By: aimeejoy
Date Posted: 05 March 2006 at 9:30am
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Donna, I had no idea. I just had a read about Ehlers Danlos syndrome - what type do your kids have? Do they need any therapies or are they relatively functional? Is there much support available to you and your family? I really hope you dont mind me asking questions. I really admire mums like you Donna, esp doing it on your own. I hope you get time to look after yourself as well. ------------- Aimee Hannah 22/10/05 Greer 11/02/08 |
Posted By: jdjzmum
Date Posted: 05 March 2006 at 11:30am
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Donna
Wow, what can I say, but I take my hat off to you and put you on a pedestool. I bought Daniel up on my own for 7 years before meeting my wonderful supportive husband. I was 24 when I had Daniel and it was hard work being a young single parent with a special needs child. I'd like to chat with you more, can you add me to your msn so we can chat further. There's heaps I'd like to dicuss with you regarding reflux etc. Kelly, hun, thanks for going to all this effort for us. What a kind hearted person you are. Let mum know, that I am going to call and I would love to come along to a coffee morning with my husband and toddler. I have registered with Janet McVeagh Recreation but haven't used them yet. I thank you all so much for all the support I have gained in the short time I have had this post up. What great ppl you all are and I know that my husband and I are going to find a lot of long lasting friendships and bigger support networks now. Love Gaye |
Posted By: Donna.I
Date Posted: 05 March 2006 at 12:15pm
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aimeejoy - Myself and my children have type III which is simply hypermobile type. We have been through orthopaedics as my 11 year olds ankles were colapsing in profusely. Otherwise help is limited. I have been meaning to join Ehlers Danlos foundation here in NZ, but have had little spare time for that. Spending more time trying to source help with the aspergers, for my four year old as he lacks understanding many comprehensions, is still not toilet trained, walks out onto a road without looking. Time for me, well um, not really, spare time is working away on my web site (which was ordered down by the support group here in NZ) so have to get it literally replaced with a new one with a different name. I also am studying this year, certificates in retail, and hope next year to move to Australia. No I never mind people asking questions, I too search up a topic when I hear of others. jdjzmum - yes will pm you my details. Must run, my house is being destructed ------------- Donna Ingram Co-ordinator Gastric Reflux Aide mailto:info@gastricreflux.org - info@gastricreflux.org http://www.gastricreflux.org - www.gastricreflux.org |
Posted By: aimeejoy
Date Posted: 05 March 2006 at 12:59pm
Wow Donna you have so much on the go, I'm impressed.  Just one more question - do the kids get to spend time in respite care?------------- Aimee Hannah 22/10/05 Greer 11/02/08 |
Posted By: Donna.I
Date Posted: 05 March 2006 at 4:42pm
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Well to be honest it is something I have only briefly considered. Due to school, and up till last Xmas, Logan and Hannah were having access visits with their father fortnightly approximately, and my youngest attended day care 10 hrs a week, then day care of 6 hours and afternoon kindy, which has been a better arrangement for us all. Now Marshall is starting morning kindy next week so we don't require the day care, as I want that time to work on him with social stories etc. ------------- Donna Ingram Co-ordinator Gastric Reflux Aide mailto:info@gastricreflux.org - info@gastricreflux.org http://www.gastricreflux.org - www.gastricreflux.org |
Posted By: k&jsmum
Date Posted: 05 March 2006 at 7:02pm
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wow Donna you really are amazing. I really hope you get to have sometime to yourself even if its only a few precious hours here and ther. I really dont know what else to say - am just blown away.
And Kelly that support group sounds amazing. I think its great that they can do that for families. Hope all goes well for you Gaye when you take your boy there. Take care ladies ------------- Marlene Keegan ~ 14 October 2003 Jaidyn ~ 14 October 2003 |
Posted By: susie q 49
Date Posted: 11 March 2006 at 9:58am
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Hi,
I am Sue, Kelly's Mum and also the Mum of Kate whom she explained is 20 now and is special needs. My contact number is 534 8895 or 021 187 3131. Our group encompasses people from pakuranga, Howick, Glen Innes and as far South as Papakura, We have a lady from Manurewa who comes. If you phone me sometme I would like it. The lady who runs the South Auckland Group is also a friend of mine Susan Haynes, she lives in Waiuku and her ph number is 09 235 0333 but she also gets our newsletter, which I can post you a copy of if you can give me your contact details. Janet McVeagh Recreation are wonderful. There is also the Recreat Auckland Trust. We have a coffee and dessert evening this Thursday 16th March at 22 Bronte Place Meadowlands if you feel like coming all this way just bring a dessert 7,45 pm I look forward to hearing from you, Cheers Sue |
Posted By: james
Date Posted: 11 March 2006 at 10:07am
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wow u ladys r amazing to have so much love and care for your pericours childern my hat (if i had one) comes off to u ------------- <a href="http://lilypie.com"><img src="http://b4.lilypie.com/nLJ5p13.png" alt="Lilypie 4th Birthday Ticker" border="0" /></a> |
Posted By: jdjzmum
Date Posted: 11 March 2006 at 10:42am
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Hi Sue
I would love to come out to your evening on Thursday nite. I did try calling the other day but got distracted by my DS. It would be easier to come ur way rather than Waiuku, just seems like a long drive, but I'm sure that Susan is a really nice person. My contact details are: Gaye Klaassen, 7 Oreti Place, Manukau Heights, 940-5121. Will chat soon, Gaye |
Posted By: susie q 49
Date Posted: 11 March 2006 at 8:19pm
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Hi Gaye,
We will look forward to meeting you on Thursday night. Bronte Place is off Meadowlands Place. Kate I forget to tell you is at Sommerville Special School in Panmure. Kelly is an awesome sister to Kate and an awesome Mum to my grandaughter Caitlyn, I have a son Cameron in between Kelly and Kate and he was diagnosed at 14 with ADD so has sometimes been a challenge but is better at 22.
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Posted By: caitlynsmygirl
Date Posted: 12 March 2006 at 1:06am
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sorry i just read what my mum wrote about my brother-better at 22 my butt lol-still obnoxious,selfcentred and selfrighteous ( he owes me $10 so im not in a forgiving mood ) and it has nothing to do with his ADHD but rather the amount of pot he smoked in school.
Anyway glad ur going to the evening thingymajig on thursday Gaye, so glad this post got u some answers 
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Posted By: susie q 49
Date Posted: 14 March 2006 at 10:22pm
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Hi Gaye,
I havent posted you your newsletter yet, Will bring it to the coffee and dessert evening 22 Bronte Place meadowlands with me on Thursday night and I look forward to meeting you. Cheers Sue
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Posted By: jdjzmum
Date Posted: 29 March 2006 at 4:40pm
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Hi Sue
Hey, I'm sorry for a "no show" at the function, my Daniel had a seizure at school that day and we spent 4 days in Starship Hospital. Scary stuff I can tell you. Didn't even click until Friday afternoon that I hadn't made contact. He is ok now, just have to monitor carefully now. Hope it was a good evening. My phone number has changed, its 262-0138 but I would like to come to one of ur get togethers during the day. Need to pick a few brains over a few issues. Sorry again to let u down. Gaye |
Posted By: caitlynsmygirl
Date Posted: 29 March 2006 at 7:33pm
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on behalf of my mum ...who is at her SQUARE DANCING LESSON HAHAHAH i can say she will totally understand u not being able to make it and i will make sure she sees ur post
hope ur son is feeling better and hope all goes well for his hip operation big hugs |
Posted By: susie q 49
Date Posted: 13 April 2006 at 10:58pm
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Hi Gaye,
Got your phone message left Thursdat 13th April, Will phone you on Good Friday, Cheers Sue
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