Worried about significant developmental delays, missed milestones, or just have have general suspicions about your child's development? Here's the place to post them and meet other people with similar things on their minds.

Great - a special forum !!! Just saying Hi. My DS is 6 1/2 has just had a SPELD assessment for a specific learning disability and it looks like we are dealing with dyspraxia with some dyslexic tendencies. We are just getting on the roller coaster of learning for him. Looking forward to chatting.

Hi guys,

First on the board! Congrats!

Our son is almost 3, and I guess I've always had very strong feelings about developmental issues with him. They started properly manifesting at about 1 1/2, when it became clear that his language wasn't developing at all. He's now at a point where his language is still incredibly babble-ish, and difficult to understand, and needs intensive prompting to clarify.

He also has very marked social behaviours--has no idea how to relate to his peers, and in fact shows no understanding that he has to do so.

Teo, it really is a roller coaster. There are so many things, practical and emotional, that you have to deal with, and come to terms with. And then there's the fight to get resources and help from people... It can just swamp you!

missy Piggy, we've had the full chromosomal workup too, DH and I were fine - and not related either which is a good start lol. That's how they found she had DNA missing on her 15th chromosome. If she'd had it from me it would be Angelmans, from DH it would be prada willi, but it's a one off for her (de novo) It makes it really really hard to find out any info about it too - being so rare and all.

Good luck with your results.

Hiya

Nice to have this thread thanks 205. DS has developmental delays,neurological issues,low muscle tone ,very hyperactive :-)10 months old now. Currently under child development team. Undiagnosed at this stage We are wait and see game.

Chatterbox was wondering why CD have such a long wait where you are?

Have you got your results back MP?

Only have 2 weeks until our appt, am quietly nervous for some reason.

yeah, it can take ages. They run them in batches, so basically they wait until they have enough to run them through. Hard waiting though eh?

We got some info through Parent2Parent yesterday. It seems that our DD will never say more than 2 words together. DH and I are absolutely gutted. Not sure how to deal with that info at the moment.

Hey hugs Starry!

But just remember that's just a benchmark and the world is littered with kids who were never supposed to walk/talk/eat/breathe on their own/live beyond x age etc.

Try not to let that expectation limit the therapy that goes in or what you do with her - because she might just prove everyone wrong!

Huge hugs though - that's truly gutting news.

Starry, thats some tough news to have to take in.

Like Eleanor said, thats a benchmark and with hard work and determination you will get her to a level you are happy with. You will get there because you a fantastic Mum and Jamie is so blessed to have a dedicated team like you and DH to help her an encourage her to reach her full potential.

Hang in there, its a hard road your travelling

Wow, awesome thread! I have been feeling a little lost and alone for a while!

I have gorgeous twin boys. One is right up there in regard to meeting milestones etc (not that I sit and look at books and wait for him to meet them ) My other little one is significantly delayed. They are 21 months now and he has never crawled, and is only now starting to bear weight on his legs and will walk with help. He has never sat up on his own and his prefered method of travel is rolling!! Everyone thinks its "cute" which it is, but not when he is approaching his 2nd birthday. We have been working with a Neurodevelopmental Therapist but she has since left and is not being replaced until next year (if at all!) We are still waiting on an appt with a Developmental Paed as well. I guess my frustrations are mainly the waiting and lack of knowing how to help him develop, and lack of help available. A friend suggested going private which I will investigate this week. Also, having twins, you always have that direct comparison as much as you try not too.

Wow, sorry for the "me" speal! I would love to hear others stories, and any ideas on how to get him moving!

Starry - hugs to you. Its a lot to take in.

Surreal - Your little one sounds similar to mine. Would love any tips!!

Hi TK! Welcome, Have you tried contacting CCS. They have an early intervention programme and may be able to assist.

I also have a mum at our swim class with twin boys. One "normal" and the other with Down Syndrome. Not the same as you I realise, but if you'd like I can ask her if she'd like to contact you? PM me if you're interested.

Hi TK. Welcome to the board Nice to have you here.

I'm sure we can all relate to the frustrations of waiting and the lack of knowing. And oh yeah, definitely the lack of help available. Hang in there.

It must be particularly frustrating for you having twins, with one hitting milestones and the other not. that your Developmental Paed appt comes through soon. Going private is not a bad option if you can help it, from what I've seen. It certainly does away with a lot of the stress of waiting for resources/funding that you encounter in the public system.

Best of luck, and hope you find the resources here of some help.

I am not sure if this is the right place to ask, but am concerned with our daughter who turned 5yrs old at the beginning of this year.
I have accepted alot of her quirks as just being a part of her personality, but now that she is getting older I am starting to wonder.
I am fearful as I don't want her to be labeled, but hubby and I are certainly needing some help.
She is very clever, picks up most things just by watching you. Is very caring and loving and wants to help and be a part of everything, talks to everyone.
But she never stops talking, if you show her a certain way something is to be done, then that is how it is and she feels it is her duty to pull everyone up on it if then don't do it.
Since week 6 of last term, she wants us to be with her all the time doing everything with her, and she has stopped sleeping through the night. She wants to control everything and no matter how you try to explain things to her, as to why it needs to be done a certain way, she will out yell you to be heard.
Her teacher has noticed that all she wants to do is be the police and she wants to go around and tell all the kids off or then tell tales on them for not doing exactly what the teacher said. Even though she hasn't done what the teacher asked either yet.
I don't know if she fits in to any disorder, but we a certainly going through a hard time with her.
She has always had a strong, assertive personality and since she could talk has tried to tell everyone how it should be done.
Any suggestions or advice would be great.
Thanks in advance.

Hi purpledragon, and welcome to the forum.

It's hard wondering if things are wrong and not knowing where to start. We have a very supportive, intuitive GP, so for us that was the first natural port of call, and the process began from there. Our boy is autistic, so we've also had close dealings with the Austism Foundation.

There are a lot of agencies out there, with a lot of different ways to accesss them, and it can all get very confusing and difficult to get your head around. Does her school know of a way to access the Ministry of Education's special ed unit? Or do you have a GP you can seek advice from? At the very least they might be able to give you information on where to start.

Obviously none of us here can help offer a diagnosis of any sort, but if you look at some of the threads on here you might be able to see some similarities between your daughter and some of our members' children. Feel free to join in, we're a friendly bunch

Hi everyone. I'm not sure I am in the right thread. I was here about a year ago but couldnt remember my password. Starry I remember you :-)and TK.
My little one is now 20 months seen for GM delays at 7 months, low muscle tone,"Neuro immaturities"...all wait and see. Have found I've struggled alot with wait and see so decided to jump back in here. Starry how is your little one? And everyone else how are things going. DS is doing well at the moment. I've taught him to sign just in case there are language delays. I think he has some odd little behaviours that others might not even notice. Would love to catch up see how everyone is doing. Please let me know if I'm in the wrong thread. Was wondering if there is a typical age that learning/behaviour difficulties would show?

Hey Mousie, yep, I remember you. Our littlies are much the same age I think.

We're all wait and see as well, since DD is the only one that we know of in the world with her little bit of DNA missing. She's doing really well (in our eyes!) She can sit unaided, can roll both ways, and is HEAPS more interactive with us. We're doing sign language with her as well, she lets us manipulate her hands and seems to understand some of what we do, but no sign of her doing any herself yet. We've also been going to conductive education and have been finding this quite beneficial to DD's development. We're taking a term off at the moment due to the arrival of DD2, the travel to Invercargill is just too much at the moment.

I don't think there is any "typical" age that difficulties would show - ours have been from birth!

Hiya Starry
Hey thats awesome DS is doing well, yes I think our two are about a month apart. I tried signing for months and months with little success. The thing that changed that was visuals. I used pictures on the laptop then signed with DS then moved his hands. Takes awhile and alot of repition but with perserverance he finally got it, I'm sure DS will do the same. Makes such a difference he tells me when he wants to go night night although now its reluctantly lol. Congrats on number 2 no doubt you have your hands full!