Developmental Delay Support Group ~#2

**MistyFying** · October 1st, 2007, 10:56 PM

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.

Monchika · October 2nd, 2007, 07:54 AM

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

donna · October 2nd, 2007, 10:48 PM

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.

**~Saram~** · October 3rd, 2007, 10:29 PM

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?

Monchika · November 2nd, 2007, 11:21 AM

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

..........so not sure how everything will go.........but we will get there.....

**~Saram~** · November 2nd, 2007, 10:27 PM

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?

**Jesswith6** · November 3rd, 2007, 07:14 AM

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.

Monchika · November 3rd, 2007, 10:25 AM

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.

**~Saram~** · November 10th, 2007, 11:07 PM

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

donna · November 18th, 2007, 08:14 PM

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.

elliemag · November 29th, 2007, 10:38 PM

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

**MistyFying** · November 30th, 2007, 06:35 AM

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.

elliemag · December 1st, 2007, 04:17 PM

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

**halltribe** · December 3rd, 2007, 08:19 PM

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.

**MistyFying** · December 4th, 2007, 06:57 AM

Hi Halltribe, you can certainly join in here

welcome.

kajolo · March 7th, 2008, 10:41 AM

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

**MistyFying** · March 7th, 2008, 01:05 PM

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.

Monchika · March 16th, 2008, 12:54 PM

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.