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Hi everyone and welcome to the support group for parents and carers who have children with developmental delays.
We hope this will be a place of information sharing and encouragement for you all, as well as an appropriate place to share your concerns and worries.
The previous thread is here.
Hi Donna,
I know what you are going through. We are at the start of having Mikey (3.5yrs) assessed. Our Paed appointment is on the 8th Oct and it has been such a long wait!
It is a great idea to write things down, especially triggers....this helps alot. I understand that you need some answers...that is exactly how I am feeling....I just want to know how to help Mikey cope better. Mikey is extremely intelligent and a gorgeous little boy....but his behavior is out of control....if he doesn't get his own way....he starts screaming and hitting and basically starts going into a rage. I just need to know how to control this so we have great outcomes for Mikey and for us. The road will be long.......but I am sure that happiness for us all is just around the corner :)
We seem to have made quite a significant discovery. Not only is DD having absent seizures, she is having 100's a day. We have got her into an urgent neurologist appointment next Tuesday. It wasn't until I started watching her (I mean REALLY watching) that we noticed every stumble, every fall, everytime she dropped something followed one of these VERY brief little episodes. The physio from disablities services said last week that she not longer requires her services. That she had caught up with her gross motor development however she seems to have a lapse in concentration when she is doing balancing activities. It makes a bit more sense to us now. Has anyone else had anything to do with this issue. I have read that these types of seizure in very young childrem can have a significate impact on their development, especially language which is Caitlin greatest delay. Does anyone have anything they can share. Feel like I'm starting from scratch again, but for the first time I feel we could be one the right track. Epilepsy running through me husbands family. I suppose sometime the answers are closer to home than you think. Keep your fingers and toes crossed for me ladies. Lets hope we get somewhere. I don't mind if the road is long, I just want to know I'm on the right one. Thanks for the hugs Maz I reckon I got them at a time I really needed them. Best of luck Monchika, I hope you too get some answers.
Hi Donna - I hope your break through brings you some solid answers to help you out, hope everything goes well at the appointment next Tuesday.
Monchika - I hope you appointment goes well too. I wish we had written more down for Xanders appointment and we will be next time as I always forget what we wanted to say. Hugs to you for the raging - we are going through similar things here and would love to hear any suggestions you get
Just a question - at DS appointment the dr said DS had low muscle tone. Anyone had any experience with this. We already do gymbaroo (for bilateral coordination) and kindy gym and we persist with little athletics but this will be our last year as it just isn't working. What else can we do to develop this?
Sorry I haven't been around in a while :(...we have been busy with pead appoinments and psych appointments with Mikey....but it is all very positive..........well somewhat anyway......we have now finished all of the psych assessments - what a long process....but she says that Mikey is not on the spectrum. :) He rated a 24 in the C.A.R.S assessment...........so she says he just has characteristics and these are all things that we can work on to get him out of them......So good news on the that front.....but a long road ahead for us..........and to tangle things up even more.....I head back to full time work on Monday after finishing up my Maternity Leave with Luke :cry::cry:..........so not sure how everything will go.........but we will get there.....:D
Monchika - that's great news! Are you happy with the diagnoises? It's very similar to what thtey said about my DS. We are seeing a psych every fortnight and start OT soon. Our paed was able to give us a diag as PDD so DS can get some extra support at school which was good. Are you able to access any early intervention services and things like that?
I was told Jack wasn't on the spectrum as well, but he has characteristics of both Aspergers and Autism.When we tried to get a diagnosis of PDD-NOS they told me that because some parents don't like "labels" on children, they weren't going to give him the label of being partially austistic/aspergeric?. Jack is 11 yrs old now and is extremely hard to handle out of school times, his routine has to be exact or he gets extremely upset. An example is: every fortnight, 4 of my kids go to visit my aunts in another town. However last fortnight, our local agricultural show was on and as they had been in Euroa on holidays for the past two weeks DH and I said they were not going. When Jack started the crying and getting upset, which was normal enough, then he started packing his clothes and started walking. After I dragged him back home (he has no road sense!) he started with the hitting out at everyone. He also has the uncanny sense of being able to bring up things that happened 5-6 yrs ago and make it like it happened yesterday.Then his obsessions kicked in and he started blaming me for Collingwoods loss in the AFL which kicked them out of the finals....All this happened in the space of half an hour!!!!!!!!!!!!!!
I am hoping to get another diagnosis early next year, so fingers crossed I might be able to get some help for him this time.
Hi Saram..........yes I am happy with the diagnosis..........this is what I was thinking all along............because he does only have little characteristics which we have been working on at home and he is getting so much better. Mikey goes to an early intervention program every Thursday morning and 3yr old kinder every other day.......so he has a lot on and copes really well with it all...........we are going to the psych again on the 14/11 and she will let us know "where to from here"..........her opinion of what Mikey will need help with and whether he will change enough by the time he goes to school. So we will wait and see. It has been great that I have been on Mat Leave and have been able to do all these appointments...............I go back to full time work on Monday so we will see how my manager will be towards me when I need to go to these appointments with Mikey.
Monchika - that's great! I hope your work is understanding.
We had Xanders follow up psy appoint and it went pretty well. She is going to give us a list of strategies to use to help. We also had a visit with an early education intervention teacher, (or some other long winded title) to see if we qualify for some help at school. Next step is OT and speechy
Monchika. i understand that you must be excited with the diagnosis for your DS. its great news however i understand the frustration of not knowing exact answers. My DD has recently been diagnosed with epilepsy. She had never had a fit and has had sooooooooo many tests. She is 4 and we have have just learnt that her brain is having seizure activity every other second.The docs also believe she has had epilepsy since she was 6 months old. we are shocked but feel in some odd way, joyful at knowing some answers. it is most certainly not smooth sailing she has now been admitted to hospital twice in the last 3 week, and we are already having difficulties with her meds. but we battle along dont we, because we love them sooooooo much. i wish you all the best with returning to work. i am blown away with how understanding my boss is when it comes to my daughter and i'm sure yours will be fine. keep your chin up.
Hi there - this is the first time I have ever used one of these forums, so I hope I am doing it right!
My name is Ellen and I am mother to a gorgeous 5 month old boy named Joshua. Josh was born with several issues which has led to him having Cerebral Palsy (not confirmed, but we know it is). He is visually impaired & is having issues with his hands and arms.
Does anyone know of any Day care centres on the Gold Coast that look after Special Needs children? I am going to have to go back to work in Feb / Mar next year even though I really dont want to & am having problems trying to find anyone that has that extra time to look after him.
Would really appreciate it if anyone could reply.
Thanks Ellen:redface:
Hi Ellen - welcome to BB and to this support group. Have you tried DSQ (Disability Services Qld). They will probably know which centres have carers qualified to look after children with special needs.
Hi Christine, thankyou for your reply. I have spoken with DSQ and they were not able to provide me with any details - they basically just told me to call around. Thanks anyway :)
Hiya All - Was wondering if I could join in here? My oldest son (15)had a head injury when he was 20months old and is close to Cerebal Palsy. I also have a stepson(13) who is in fostercare with aspergers and probable schizophrena (he is in foster care because of sexual tendies towards his siblings). Our family has travelled a sometimes very hard road and there will be rocky bits in the future as well. Its nice to know there are other people out there who can understand just a little bit of our journey.
Hi Halltribe, you can certainly join in here :) welcome.
Hello,
My name is Sarah and my Son Jordan has several underlying problems some of which have been diagnosed some which have not.
Ill start from the begining,
Jordan started having terriable outbursts when he was around 18months old, he would go out of his way to hurt him self on what ever he could, For the next 6 months this continued and somewhat got worse i thought prehaps it was just Terriable two's starting early.
Come towards the end of 2006 when he was 2.5 years this is when i noticed that he was delayed in some area's and i started to get concerned. I was heavily pregnant with my son and he was just running me raggered.
I contact Child and Youth Health and got a appointment for a assessment to be done, a lady came out to our home and assessed him She then made a referal for more Assessments.
At the time of assesmment jordan was 3 years and 2 months old.
To cut along storey short he has been diagnosed with the following
- Learning Disorder/Delay
-Speech Delay
-Sensory disorder
and a Language Disorder.
He was also described as a extreamly hyperactive child, further assessments will need to be carried out when age appropriate to determine if there is a underlying behavioural issue.
Basically the Pead said that he wont diagnose Jordan or tell me what they think it might possiably be until Jordan is 5 because of some of the traits/characteristics Jordan displays can be classed as the normal for pre-schoolers.
We are currently seeing a Occupational Therapist and a Speech Pathologist.
Jordan also has Conductive hearing loss in his left ear and a significant hearing loss in his right ear this could have contributed to the Speech delay.
So i am doing as much research as i can, i am trying to do as much as i can to help my son learn and staying focused on activities.
I am focusing on Structured craft play at the moment with him to help his Sensory skills.
The reports of the assessments are so confronting for me, to see things things written about your baby in black and white.
I have just Enrolled Jordy in Pre-Entry Kindy and he is now going to a ABC center and the benifits of him attending the Childcare center have been enormus!
Are there any parents out there that could reccomend a good book for activities to help him learn.
I would really like to stay in this group.
Jordan starts Kindy on the 19th he goes one day a week for three hours, i am so excited and yet so nervous at the same time.
He will continue this one day a week routine until he turns 4 in August.
:)
There are so many more things written in the reports he has issues with gross and fine motor skills and we will be seeing a physiotherapist on the 26th.
Jordan is also entitled to get some one on one help through the kindy through Disabilty SA.
Any advice/suggestion/information would be greatly appreciated
Thankyou
Sarah
P.S I am terriably sorry if this is all over the place i am so nervous about talking/typing about these issues my son has it makes it so much more confronting but i really feel i could gain knowledge and support from this forum and that i could offer knowledge and support to other parents as well :)
Hi kajolo and welcome :) it's great to have you join us and share your (and your son's) story. We can learn so much from eachother and share the load a bit too.
HI all,
I guess I am after some advice. We went out to an indoor play centre this morning with my son Mikey, nearly 4, (who has a developmental delay and characteristics of Autism). There was an incident on the trampoline where 3 other boys (maybe about 5years old) where kicking into Mikey. Mikey is so passive, he fell down into the fetal position and was just taking the beating from these kids. I had a gut feeling that something was wrong and went looking for Mikey....and saw this incident. I went off my nut and started yelling at these kids and basically rescued Mikey.
I was wondering if this has happened to anyone else, and what people's thoughts are on enrolling into a Karate or self defence class. I am in Melbourne. Does anyone have advice or does anyone else send their child to a karate class that is good. Any advice would be very helpful.
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?
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.
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
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 :D:D
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 :)
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 :rolleyes:
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.
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.
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
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 :wall:
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
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.
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.
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.
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.
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.
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.
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
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.
Hi Cate and welcome :)
Well things are a little bit harder for me at the moment. I have just split up with my hubby of 10 years. It was my choice, but it does complicate things with looking after special needs children. Hope everyone else is well.
Hi FluffyLaRue, I am sorry to here about that, I seperated from my husband (of 9 years) when my now 2 year old was 3 months so I understand how tough it is, do you have a good support network where you are? My x and I seperated because he couldn't handle (and still can't, he only occasionally sees my two older kids, never the younger two) that there was something : as he put it wrong with our three year old. I am lucky though I have very supportive parents that take my two year old when I need to take Corey to his appointments. I am sorry if I have offended you in any way from my last (or this) thread, I just thought I would put forward my story as when I was first going through this with Corey none of my friends had kids that weren't doing things when they should on the chart so I had no idea what I was doing and the worst thing I ever did was listen to my GP and waited the extra year, if I hadn't waited Corey would have started his schooling and threapy last year and we would have been a year longer on this road instead of just at the start, AARGH. Oh well. I hope your journey along this road is a little easier and a little faster.
Hi every one,
Thanks barbie up and saram for your kind words. Saram glad to hear things are going well for you and things are moving along.I have taken your advice and decided to stop giving myself a hard time over things I can not control and to concertrate on the things I can. I found an affordable speech therapist so my son is now having weekly therapy and he seems to be be improving. Its funny how the small things are now major events. He actually put his own pants on the other day and I could not have been more proud or excited if i tried. I felt like he'd won an olympic gold medal and then to top it off he actually said to me, 'mummy what we doing today', it one of the first time I remember him asking me a question without being prompted. so it was FABULOUS!!!! So bottom line is I feel much more in control now and and I am sure like every mum and dad on here, I will stop at nothing to get him the help he needs.
My son had been refered for an autisim assesment as he is now showing more characteristics of the spectrum, like spinning around in circle for long periods of time. What ever his diagnosis is we will tackle what lies ahead together. He is coping much better at kinder and now loves to go, although the kinder went out and bought him a train set because this is one his obsessions but at this point in time I am happy with what ever works.
Talk soon
Jeanette