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escadachic View Drop Down
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    Posted: 12 October 2011 at 11:39pm
So, who has a child or children with developmental delays?

How do you find it, parenting a child with such delays?

How have you found other parents are towards you?

How about other children and how they threat your child?

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escadachic View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote escadachic Quote  Post ReplyReply Direct Link To This Post Posted: 12 October 2011 at 11:43pm
So, who has a child or children with developmental delays?

I do, this being why I created this topic. My older daughter, who is 8 next week, has a delay of about 2-3yrs.


How do you find it, parenting a child with such delays?

I honestly, find it very hard and quite frustrating at times. It can be really stressful.


How have you found other parents are towards you?

Parents seem to avoid me. Well parents of children who are in the 'normal' spectrum that is. Parents who have special needs children are fine towards me.


How about other children and how they threat your child?

Well, they either bully her, avoid her or want to look after her. Sadly, she has no real friends at school. So I feel really upset when all the other children in her class or at her school are having regular play dates and she's not been invited for 1 play date this year!

The last time she had a play date was last year, before her friend moved to Auckland.



Edited by escadachic

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james View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote james Quote  Post ReplyReply Direct Link To This Post Posted: 13 October 2011 at 7:45am
Originally posted by escadachic escadachic wrote:

So, who has a child or children with developmental delays?

Yep I do James has Dyspraxia which effects him both with cooranation and his speech

How do you find it, parenting a child with such delays?

It can be quite hart breacking epess when he notice he cant do what outher kids can do eg clumbing a rock,say certain words (he is in speech therepy 3 times a week)but on the flip side i am soo proud of him he works so hard at all his therepy and has come shuch along way he can now copy a story from the broad into his book,his teaher is so pleased with him

How have you found other parents are towards you?

Most are ok but because james looks "normal" they either think i am making it up or tell me to stop worrying that he will be ok( would love to know how they know this)

How about other children and how they threat your child?
James is quite popural at his school with lots of little friends any teaseing is sorted pretty quick most ask why he cant talk popurly which i can see being a issure when he is older


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escadachic View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote escadachic Quote  Post ReplyReply Direct Link To This Post Posted: 13 October 2011 at 2:59pm
I'm thinking it's just my daughters school that is the problem then and that it's just very cliquey.

I was talking to a few people I know with children at a different school and they say, this school(not Sophie's one) is really good and there's no exclusion and snobbiness or avoidance towards parents or children there. So maybe I'll look at changing schools. I don't want me girl bullied and have her self esteem lacking because of some ignorant children and parents. I want her to enjoy the school experience and have friends and not to miss out of having play dates.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote susieq Quote  Post ReplyReply Direct Link To This Post Posted: 13 October 2011 at 6:22pm
I am a Nana,(TheKelly) is my daughter,
I too have a developmentally delayed daughter she is now 25 (26 next year)she has dyspraxia also and epilepsy, she at 25 still likes some Barney dvd's, and she loves the Full House series
We mainstreamed her at school until she was 10 but the gap got wider and the 10 year old girls wern't too nice to her, at intermediate age, she went to a very good intermediate up her in Auckland called MT Roskill that has a (physically disabled unit) and then she went to another school up here called Sommerville special school which she also enjoyed,she went to college at a satellite class of the special school.
Now she is at Ambury Park in Mangere doing a vocational programme.
I dont know how delayed your daughter is but schools could become an issue later.
I am also a newsletter co-ordinator of a group up here called the East and South Auckland special needs support group, we have coffee and dessert evenings and coffee mornings for parents/caregivers of special needs children
adults, support is very important for yourself, and my daughter also goes to camps and holiday programmes provided by a recreational group catering for children/adults with special needs , she is in fact at a camp this week,due back tomorrow and next week has holiday programme
Hope this helps
susie
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escadachic View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote escadachic Quote  Post ReplyReply Direct Link To This Post Posted: 13 October 2011 at 9:26pm
My daughter is delayed about 2-3yrs. She's 8 next week, so that makes her around 5-6 developmentally. The school, as in the teachers is great. It's just the parents and other children how aren't too kind. And I've been told, as she gets older, the developmental delay gap will seem bigger, though it won't actually be.

Her school is in an upper class suburb(though we aren't upper class, we struggle on one income of $32,000 per year) So a lot of her peers are geared towards making great academic achievements all all seem to have many extra curricular activities.

I have Sophie going to Brownies, which is all I can afford and she enjoys that. But yeah, she can be a challenge at times, to adults, teachers and so on.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote rorylex Quote  Post ReplyReply Direct Link To This Post Posted: 08 November 2011 at 6:51pm
My 6yr old has is delayed, he has moderate autism/ global development delay and may be dyslexic as well.

he is physically fine he has no delay in that aspect his is purely mental. he is proberbly 2-3yrs behind, but he has the attitude of your average teenager.

I dont find parenting him too hard he is harder than the other 3 but I just dont get myself strung up. I dont take him places if i can help it and if i do I take him on his own I find he is better on his own. things like the Zoo arnt a regular for us as much as i would like it to be.

It certainly hasnt been easy when it comes to other parents, I have actually had some people un friend me becoz of the way he is, this was before he was diagnosed and it was just seen as bad behaviour.
I have even had family do the same.

He is at a satilite school so I have no problem with other parents in school coz they are all in the same boat and understand.
He doesnt get bullied and wouldnt know if someone was and would proberbly just laugh at someone who was and make their teasing useless.

My close friends have no problem with him, He gets invited to birthday parties and have had parents very impressed with his beaviour, especially if i have expressed to them about being worried. but he actually really enjoys birthday parties so that worry has gone.

he gets upset very easily and does a silent tantrum which he just resembles someone passing out. he is obsessed with bubbles so i have an endless stash in a secret hiding place.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote rorylex Quote  Post ReplyReply Direct Link To This Post Posted: 08 November 2011 at 6:53pm
If I were you I would seriously look at different options for school if you can.
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escadachic View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote escadachic Quote  Post ReplyReply Direct Link To This Post Posted: 08 November 2011 at 7:13pm
So what is a satellite school?

When Sophie was younger, I had this friend, who isn't exactly tactful. Before I looked into things, like her hearing and such. This friend would say quite nasty things about Sophie. Such as "I think your daughter has mental problems" and "Sophie's not normal, she's weird and other friends of ours agree" and she'd tell me to go take Sophie to see a psychiatrist. But I found it, by actually asking these other friends, that they hadn't said any such thing about Sophie and that this other friend was just being a bitch.

I do feel like some people either un-friend me or avoid me once they realize whose mother I am. At times, I feel very stressed out by Sophie when I've taken her out and feel like I'd rather just avoid taking her places, due to certain behaviour. But then I feel like she'll feel rejected if I don't.

I actually found her last school and kindy really good. As she was good friends with 2 boys from Kindy to School, who both had similar delays. I found the parents really good there. But it was 1/2 an hour away and it took forever to get there and back from where I live now. So I found it more practical changing her to the school in my current suburb.

I find, sometimes Sophie is really hard work and other times quite easy. I find my toddler hard to deal with, as she's not delayed, so a lot of the things she does now as a toddler, I never had to deal with, with Sophie. So I'm not equipped with previous experience. My toddler is very hard work lately. Doing the terrible 2's early.

It's comforting to know there are others in the same boat. But at the same time, I feel for you too. As I know how challenging it can be. Thanks for sharing, I really appreciate it.

I heard about a coffee group they have in Wellington once a month, for parents of children with special needs. But I missed this month's one and before, I'd never known about it. So it'd be great to connect with others.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote TheKelly Quote  Post ReplyReply Direct Link To This Post Posted: 08 November 2011 at 8:05pm
This defines a Satellite class Escadachic

A satellite class is run by a special needs school, but within the grounds of a mainstream school. The special needs school itself is the “base school”. Classes within the base school are organised primarily by the need of the student, rather than focusing on age (as mainstream schools do). This is true of the satellite classes too – for example the class my five year-old child attends has children aged through the full primary school age range, not just new entrants.

As my mum said above my sister is developmental delayed,shes 26,but more like a 5-13 year old depending on her mood...im not a parent,but after living with/knowing her for 26 years I think im pretty well educated in what its like to live with it,so if you ever have any questions I'll be happy to help with them.

And shame on that person,who the hell tells a mum that they think their child has "mental " problems,she sounds like a bitch,you're well shot of her!





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escadachic View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote escadachic Quote  Post ReplyReply Direct Link To This Post Posted: 08 November 2011 at 8:35pm
Originally posted by TheKelly TheKelly wrote:

And shame on that person,who the hell tells a mum that they think their child has "mental " problems,she sounds like a bitch,you're well shot of her!


The kind of person who does that, has mental issues of her own. Improves how she feels about herself by tearing others down and tries to drag everyone else down with her, when her life sux.

Naturally, I have distanced myself from this person.

And hey, thanks for your post

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escadachic View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote escadachic Quote  Post ReplyReply Direct Link To This Post Posted: 08 November 2011 at 8:36pm
Pity they don't have such a class at Sophie's school

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Post Options Post Options   Thanks (0) Thanks(0)   Quote rorylex Quote  Post ReplyReply Direct Link To This Post Posted: 09 November 2011 at 9:32am
they might not at her school but another school might. there is quite a bit of paper work involved and it pretty much highlights all your childs negitive points.
sam is under orrs funding and takes a taxi to and from school. my older 2 are both in school but 2 different schools. sam gets dropped of at my ds2's school so the other parents do see him but becoz his delays arnt obvious(unless he tries to talk to them) they proberbly dont get why he isnt at the same school.

I actually dont find the other 3 hard at all, I feel bad admitting it but our house hold runs a whole lot smoother when sam is away. he stays up late and I actually gave up forcing a bedtime on him so as long as he is up for the taxi I dont worry about his bedtime we just do things to really tire him out so he cant keep awake. But i completely understand not wanting to take them out, I avoid it as much as I can. I want to take the kids to the zoo and other places the like, but I dont want to take him and I feel bad that he will miss out if we take the others and not him. I dont even go to Mcd's not bcoz there are 4 kids but bcoz of sams behaviour, but I do take him there if he is by himself(I had emmett to but he was only tiny baby at the time).
I tried taking him to kelly tarltons for his 5th birthday, we trained and bused into town, what a mission that I wont do again getting him the short distance from the train to the bus, then having to wait for a bus at the other end. we now stay with in town.
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Mason - 13.06.08
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escadachic View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote escadachic Quote  Post ReplyReply Direct Link To This Post Posted: 09 November 2011 at 10:16am
Originally posted by rorylex rorylex wrote:

I feel bad admitting it but our house hold runs a whole lot smoother when sam is away


Don't feel bad. I feel that way too when Sophie is away. I can just relax a bit and feel more energized. I feel very grateful for any break I get from her on the weekends. It makes it easier, for at least a few days, to have the energy for her. I just hate that whenever she see's her Dad(he's not my toddler's Dad) she comes back and plays up hardout. He let's her away with EVERYTHING! So naturally, she feels like I'm such a meanie, after spending the day with him. It's annoying how the parent who doesn't have them full time, let's them do whatever and tries to act like a friend, rather then a father.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote High9 Quote  Post ReplyReply Direct Link To This Post Posted: 09 November 2011 at 10:56am
Definitely look into it. Are you entitled to anything through Winz for her? BIL has diabetes and gets disability allowance. It's not much for him and his mediiction but better than nothing. Perhps you could use it towards transport costs? I know Newlands Intermediate used to take one special needs students as I'd never actually met anyone with 'special needs' (I hate that term) until I started Intermediate as the local schools I went to didn't cater for them but I am pretty sure Johnsonville Main School does - near the Playcentre. Perhaps just call around?
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escadachic View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote escadachic Quote  Post ReplyReply Direct Link To This Post Posted: 09 November 2011 at 11:54am
I have heard Johnsonville Main is a pretty good school. I just hate changing schools too much. I was shifted around way too many growing up. But yeah, it's worth thinking about.

Not sure if winz can help, just due to her not having any named disorder. All she's been diagnosed with is a developmental delay of 2-2 1/2 yrs.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote High9 Quote  Post ReplyReply Direct Link To This Post Posted: 09 November 2011 at 12:00pm
Anyway you could push to find out what exactly? Sometimes you really need to push doctors as I've just found out with Lily.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote TheKelly Quote  Post ReplyReply Direct Link To This Post Posted: 14 November 2011 at 12:18am
I think you will be entitled to something Kelly,my parents get a disability allowance for my sister and I think thats all it was based on,will have to check with my mum though





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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 November 2011 at 8:55am
You should get a disablity allowance and Carer support days to be used for respite, we have a service up here called T...... who are actually hopeless, have to be on at them all the time,
alot of people up here are changing to individual funding rather than T......,
The disablity allowance goes up in amount when the child is 16 and when they leave school they get the invalids benefit
hope this helps.
you do have to push for everything you are entitled too, which is why people find our special needs support group here very helpful
susie
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kiwigal Quote  Post ReplyReply Direct Link To This Post 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.
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