Developmental Delay Support Group ~#2

[MistyFying]

That's awful! I hope he's ok. With my DD, she is bullied not so much physically, but verbally. I taught her very early on that she should first say, "Stop it, I don't like it." And if the kids don't stop, she's to move away. If they come after her, she's to run and find a teacher/adult to help her. Anything you can do that will help self-confidence, resilience and social skills will help. Maybe a team sport?

[Monchika]

Thanks MistyFying,
I have taught, or least I thought I did, for Mikey to say "Stop" to kids that hurt him and to move away, but is it wrong to tell him to hit back or kick back? I want him to stand up for himself, because obviously he doesn't understand to run away.
It hurts my heart to think that he was just taking this beating and I am scared that it will not be the last time. A team sport? I am not sure if he will understand the rules of playing in a team. I am just beside myself and don't know what to do.

[~Saram~]

Hi Kajolo and welcome, I know what you mean about how hard it is to start talking about it! This is a great place to talk to others who understand where you are at!

Monchika - Oh I feel for you, there is nothing worse than that feeling! We took DS to a karate class type thing but it just didn't work, it was just too much for him but he does remeber the things he learnt there and asks to go back so I guess he enjoyed it! It was called choi Kong do and they have tiny tigers from 3yrs

[Monchika]

Thanks Saram..............I have been talking to my collegues and a few other parents at work and and pretty much everyone has said to try Karate....so I rang a place today which is close to home and they have a 3-5yrs class..........we will try it and see how it works..........fingers crossed

[kajolo]

Monchika- Aww how sad, i hope your DS is ok?
MY DS also does not retaliate when being bullied, this happens at childcare and unfortuantly he has now become a target for some of the bullies as they know he will not do anything to stop it/protect himself.
He does say "Stop!! ,I dont like it" "your making me sad,upset,hurt,angry"ect.

I am currently working with the director and his room leader to help implement new stratigies.

I too have thought about self defence classes.

Goodluck, let us know how it goes please

[FluffyLaRue]

Hi ladies,
Looks like I might join you all.
My older son has mild intellectual disability and what the genetics clinic think is a syndrome- they just don't know what
My baby ( who is now 2) didn't show the same signs and I was very happy- but then all of his milestones have been way behind, and he is in the bottom 3% for his age group in all areas of language. I think he needs his motor skills assessed too pretty sure they are behind.

[MistyFying]

Absolutely you can join us. Welcome. Is your older son having therapy of any kind? It's frustrating when they can't give you more information, isn't it.

[~Saram~]

HI Fluffy and welcome, it's so hard when you are waiting on a diagnoisis and not sure which is the best way to help them! Hope you get some answers soon

[FluffyLaRue]

It's actually not likely at all. We have had tests for Fragile X syndrome, and a full chromosome count. They came back fine. It's like a needle in a haystack... They don't even know where to start looking- if none of the searchable conditions come up positive.
I'd like to have a support group- yanno? People who have been through what I am going through... I'd like prognosis. We have none, no insight at all. If I could afford it, I'd just pay for tests, but it's so hard for the RCH to even suggest what we test for next! There are so many parts on the chromosomes themselves that could be the culprit

[~Saram~]

I think a lot of us are in similar situations in that "developmental delay" is such a broad nomans land of evolving and changing challenges or symptoms or whatever you want to call them so we are all just trying different therapies, test etc in the hope that something clicks

[FluffyLaRue]

Yes- Developmental delay is such a broad term. Global delay is the same.. very generalised. I'm really hoping Thomas is just delayed... Because his older brother now has the label "mild mental retardation" which is kind of broad too....
I'm really focusing on speech therapy atm. I'm going to apply for early intervention too, though my experience with it in the past was that it's very thin on the gorund- they are so stretched that you might get an hour per fornight, if you are really lucky.

[~Saram~]

Funny story - we applied for early interventiona dn DS teacher turned it down! She told the early intervention teacher he was settling in well no probs and no they didn't need any extra support - the following week he was running out of the classroom, screaming all the way to school, etc - we very quickly has a parent/teacher interview :-) Unfortunately they had already closed the Early intervention so if we wanted it we had to reapply ugh! I was so mad.

Can't wait to start OT with Xander, we had a really positive experience with the OT during assessment and just waiting on the report and follow up. Still on the waiting list for speecie! The joys of regional QLD

I hope your speech goes well and that you get some good assistance from Early Int.

[FluffyLaRue]

I get a decent rebate on my health cover for our speechie- she has worked with us before and knew Thomas when he was just a bump
DS has funding at school and we get carers allowance for him- which is great- pays for the speech therapy sessions.

[Nette]

Hello everyone,
My name is Jeanette and my beautiful son Nicholas (almost 4) has recently been diagnosed with a significant speech delay (around 2 yrs in both expressive and receptive language) he is also delayed in his development in many other areas. I have two older children and must confess i thought he was a little behind but like many parents i thought he would simply 'catch up'. I will never forget the day his kinder teacher pulled me aside and muttered those dreaded words words, ' Ithink there might be a problem'. I truely felt like I had been punched in the guts!!!
We are now in the process of having him assessed, many blood tests,particularly chromosones, he has had a hearing test (which is fine) and of course he is having fortnightly speech therapy. He has many characteristics of autism and is finding 3yr old kinder a little tough. he has been refered to early intervention but i have been told he will not receive a place until next year, which is incredibily frustrating.

I was wondering if anyone could give me some kind words of advice on how you coped the the overwhelming feelings of sadness, guilt and frustration . I sometimes feel appauled at myself as I feel i should be coping better than I am and I am absolutley racked with guilt for not taking him to the ped earlier than I did. It seems everyone around me thought there was a problem but no one knew how to tell me.

Thanks for listening its great just to have somewhere to vent to other parents in similar situations. It is such an awful feeling knowing there is something not quite right with your child and one of mummy's majic bandaids just can't fix it.

[barbie-up]

Hi Nette and other mums - my son is 2.5 and we start and EI program next week. I had concerns, mainly about his speech and social interaction and saw a paed. OT through the local council in late April. She seemd to think he had sensory integration issues and put us in contact with an EI centre in Mt Waverley. She talked about him being on the spectrum and that it was lucky it was picked up so early.

We also a paed. earlier this month who look a detailed history from my mother and I (my sons' father doesn't think he has a problem) and said that based on what we said, there was cause for concern, but based on what she observed during the hour we were there, my son seemed fine and very bright and to come back in six months.

You can't win sometimes, as a parent. Some mums I told about my son said I was being too picky and even my mum said I was just looking for problems and so many of his 'quirks' can be explained as regular 2yo behaviour. But he just has so many of them. And then, if you relax a bit and think that things will even out by the time they're 4, 5 or 6, you might have missed something and you kick yourself about it.

My bottom line is, Alex is healthy and happy and the most beautiful, cheeky little tyke around and if he's going to have problems learning or socially, then I'm going to help as much as I can.

I've booked him into 3yo kinda where his sister went three years ago. When she was there in 2005, there was a boy with autism there and he did most of what the other kids did, but then other times, he would go off and do his own thing. The teacher and assistant didn't enforce sitting on the mat or whatever they were trying to do.

Good Luck,
Barb.

[~Saram~]

Barbie up - Hi and welcome. There is a very important lesson I have learnt this past year... mum's intuition is usually right. it is impossibly frustrating and gut wretching when you get mixed diagnoises from professionals and especially when your family don't understand where you are coming from. We took DS to child health nurse at 2 as he had little speech and was showing what I thught was obsessive behaviour, lining up toys, objects had to be in a particular place, watching the same videos hundreds of times in a row and was told not to be silly. Now at 5 he has been diagnoised by one paed as having Pervassive deveopment delay (ie delays in parts of his development but not in any recognisable pattern) Sensory Processing disorder in 12 out of 12 areas of deficiet, one paed said what yours did, that he was probably just a very bright boy who was bored in school and now we are supposed to be seeing yet another paed for his school.

The point I am trying to get at is it is hard for these people who see your child for 15min-1 hr to diagnoise what is going on. My DS had two brilliant days when we went to see Paed, said hello and goodbye and played relatively normally while we were there. the day we saw the OT we were there for 3 hrs and she actually got to see the real Xander and surprise surprise she actually has some awesome tools for us to work with, balance equipment, vibrating cushions, weighted blakets etc which are making a HUGE difference in our ife. But we still have family tell us we are over-reacting or that there is nothing wrong. Mostly I have discovered from talking with my mum who was in denial that she was afraid to admit that there was a problem where as for us we saw the diagnoises as a relief as we then had a way to approach it as otherwise it just meant either he was a "naughty kid' or we were "bad parents"

Nette - please don't beat yourself up about it! Everytime a new study comes out about links to this and that and autism I go through the same thing but what we have to remember is it is not our fault and we have done the best we can. I'm sure even though you may not have been seeing the "experts" you have been helping your child to achieve and develop in their way and you will probably find the therepies are very similar to what you were doing in your own way anyway.

[~Saram~]

update on us - 2 wks ago DS teacher reactivated his early intevention program (after shutting it down at the beginning of the year - who knows why) so we had appointments with special needs teacher and early intevention team. Nice to know that something is happening there.

The other positive is our AWESOME OT! We had our follow up appointment today and although we left almost $300 lighter of pocket we have a vibrating cushion, 2 books to read, a balance beam on order and need to discuss a listening program??? Costs up to $2000 (anyone else got any info on this?)

She is also going to contact the paed (whose report we finally received 2 weeks ago) about his report and her recommendations as is the early intevention team with their observations after his report went something like this:

presents with DS questioning aspergers syndrome and although DS presents with some autistic traits they are insuffient for a diagnoises. However if needs at school become extreme I am happy to tick the PDD box. - or something along those condescending lines. Anyway both the OT and EIT believe there is more going on and want to get him moving with some therapy so all is going well here.

Hope you are all doing well with your gorgeous kids. Talk soon

[cate0404]

Hi my name is cate I have been looking around this site for a couple of days now and only just found this forum. I have four children 9,8,3,2. My three year old is developmently delayed,his speaking level is that of a 2 year olds, he has issues with routine to the point that everything has to be done the same way it was done the first time it was done - he goes to a speach therapist, a peadatrician, genetesist, ear nose and throat doctor and is at early intervention preschool. He has been tested by a lot of people doing a lot of tests but so far no results, in a week he goes to have his autism test (fingers crossed) I am now at the point I don't really care what it is that he has I just want to know what I can do for him. I am very lucky where I am (Canberra) that there are a lot of facilities to help both me and him. Probably the best thing I ever bought for my son was a set of DVD's called Vocabulary Builder through BabyBumbleBee, they seem to be working for now. I sympathise with the other people on this forum and admire them for what they are doing to help their babies.