another how many of us are there

[Nowhere]

hey everyone

well we know all the regulars in the chat thread lol as we keep are selfs well know lol

but i know there is more of us here so am curios how many mothers on here have children with special needs, or aditional needs, hurdles in life, etc I know we all call it difernt things

So if you want to come in and say hi, i know there has to be more

[LivinOnAPrayer]

I've got a lovely bunch of coconuts, diddly dum! There they are-a standin in a row, dum dum dum, big ones small ones some as big as my head!! :wave:

[kiwibird27]

I can't write it all again Amy!!!!!

[flyawayfree]

i.ve said hi before in the chat thread but i don't get on here often enough to keep up with you all.

[LivinOnAPrayer]

supa_star323i.ve said hi before in the chat thread but i don't get on here often enough to keep up with you all.


hehehehe cause linda talks too much:eek:

[Nowhere]

I can't write it all again Amy!!!!!

thats ok stacey lol we all know you heheh

[MyFourCubs]

Hey guys:) I tried this with the "please come out and introduce yourself" thread. Thanks so much to those of you who did! Even though I don't join your chat I feel like I know some of you a bit better and can follow you on whats going on. For the record, I think you are all awesome, incredible ladies who are doing a fantastic job. :thumbsup:

Most of you probably know I have Alexander who was 2 in January and recently diagnosed with ASD and SPD. Has dx severe language and communication delay. However, I think he is very very clever- he can count up to 15 and count backwards from 10! No, I didn't teach him either, and he can sing songs he has only heard once, (Doesn't get the words obviously but perfect melody!!) and can parrot exact tunes. I just get so tired of listing all his BAD traits, just wanted to highlight some of his GOOD for a change!!!!:)
Sara

[Nowhere]

hey

thats great about your son and picking up melodies and hiw counting how awsome, its great to concentrate on what they are really good at

[DoulaRobyn]

I have two children with the same condition as me, it is very rare and called EEC syndrome.

Might be easier if you look it up if youre interested to know what it is all about. I pretty much have it to the highest degree but both my children who have it, suffer from it mildly-medium.

[Loopy Linda]

hehehehe cause linda talks too much:eek:


hmmm not totally untrue i guess, but peta can keep up with me!!

okay most everyone knows i have GOrdy who is 7 1/2 months and has brain issues and a large cyst in there too!

[bossoflatch]

.........

[Loopy Linda]

boss i think you do belong, not being rude but what is a typical sn child?

all the kids are so different, so many different things to worry about, so many struggles but some accomplishments aswell.

[DoulaRobyn]

I thought I would tell you a little more about how EEC affects my family, I guess I wasn't feeling too talkative about it in my last message! (sometimes you get sick of explaining every aspect of a little known condition, if you know what I mean?!?).

Firstly, I have four children, two with the syndrome, two without - and I knew I had a 50/50 chance of passing it on as I have the syndrome myself, and that is the way that it worked in my family, the two middle children are like mum.

Miss four has the middle finger (and some hand and wrist bones) missing on her right hand and she is missing two toes on both feet with some fusing of the toes she does have. She is missing many bones in her feet and some in her ankles. She was born with quite sever clefting of her feet and has had one operation to 'bring her foot together', we are still trying to determine whether her other food will need augmentation. She has very slow growing hair, she has never had a haircut and some of her longer whispy parts are just touching her shoulders. She doesn't seem to have much body hair and her kidneys are small and mishappen but so far seem to do their job. Her eyes are sensitive to the wind and to bright lights. She can get hyperthermic and overheated in weather extremes or in the bath if the temperature isnt watched. In the car if it gets too hot she passes out. She doesn't seem to have too much of a hard time walking or doing most tasks, so she is lucky :)

My Miss 3, has the middle finger missing on both hands and has more bones missing in her hands than her big sister. She has had operations on both hands to close the large clefting she had when she was born, the scars go down to her wrists. So far her hands don't seem to cause her too much trouble, but she uses her hands to pick things up with like the clefting is still apparent - so thumb and finger on one side and ring finger and pinky on the other, this does impair her grip a bit but she is a determined little miss that does things the way she wants! She has sensitive skin and it is dry, and she suffers from rashes and insect bites badly. Her eyes are sensitive and she gets chronic conjunctivitus from things such as grass fibres or if I use the wrong pillowslip. Her feet are little and very slim and she is missing three toes and their foot bones on one foot (she has had an op on this foot to fix the deep clefting) and the other foot has toes that are fused or partially formed. Despite this she seems to walk and run well. She has a hard time getting warm once she has cooled down - say if we go to the beach or the swimming pool. She is small for her age but so cute!

Both of the girls are not as affected by the syndrome as severely as myself. I think because I have lived a life with it myself I am able to help them with coping mechanisms and teach them how to stand up to an uncaring society (which I must admit is getting better). I am just starting to notice that people are pointing out their differences (how nice of them) but I have taught the girls to explain that they were just born that way and then change the subject and get on with play!! I have also explained to the girls that each and every one of us is unique and therefore slightly different to the other and that our differences are just more noticable than others. How do you find society reacts to your 'different' family?

I wouldn't want to change my kids for anything, I love them just the way they are ;)

[Nowhere]

hey robyn thanks for telling us about the syndrome you and your beutiful dd have, I know what you mean about how sometimes you just cant deal with explaining it

Sorry to here that you all have your chalanges inlife it is great that you are teaching your childrenhow to manage to do things in there own way

I bet they are very determind little girls, im guesing they also have that in common with you

[srguitargirl]

Hi Robyn thank you for telling us about your beautiful children, I used to look after 2 little brothers with EEC I think we never had the diagnoisis as we were just child care worker ! but they had the skin and the clefing of there feet and hands they were so cute and adorable and the sweetest little children.

um I think everyone know me but dd 5 mths with Bilateral Dysplastic Kidneys and Polyuria things are great at the moment and we just hope they stay that way.

[DoulaRobyn]

Oh yes they are very determined Miss' indeedy!!! They will challenge me I am sure - omg wait for the teenage years! They also have absolutely gorgeous hearts :)

I just read in your siggy that you have a baby with an undiagnosed syndrome. I empathise with you on this one. My syndrome didn't get named or discovered until 1991. I was a teen and they told me that I would never be able to have children over it! - well I showed them!!! The not knowing can be so hard, also the inability to be able to see someone who is coping with the same 'differences' as you too. (I hope I am making sense, I have the worst headcold and my brain doesn't want to create sentences this morning!). I can also sympathise with you over the not sleeping part. My first born had a wicked silent reflux and he pretty much didn't sleep for the first three and a half years of life. He would literally go five days sometimes without sleep. One day I was so tired, I was up patting him in his cot and I fell asleep standing and fell through the wall and opened my eyes to find half my body in the bathroom and the other half back in the bedroom. I can look back on this with a smile on my face these days because you know what bothered me the most.... I had woken him up!!!!

Lets hope that there is always somewhere like this that we can talk about our life challenges openly and honestly without fear of others judging us :)

Thank you for reading my long-winded post above, I obviously had to 'get it out' today ;)

How old is your little one now?

[DoulaRobyn]

.....Bilateral Dysplastic Kidneys and Polyuria....

Oh you have a cool name for your condition too ;) I always have a little smirk on my face before I explain to someone what EEC syndrome stands for, "Ectrodactyly-ectodermal dysplasia-clefting syndrome", I say and they nearly fall off their chairs. May I ask if your condition is about cysts in/on the kidneys, or have I mixed it up with something else?

How interesting that you got to look after those special EEC brothers. I am yet to meet someone out of my own family that has the syndrome, there aren't too many of us out there!!

[Nowhere]

Goodness teenages yikes lol

the undiagnosed syndrome thing is frustrating yes as you know as there is nothing to compare her to and no prognososis KWIM

Miki is just miki really kwim, she has her hurdles in life but is a happy girl most part (when her meds are all corect)

At the moment sleep is non excistant

[DoulaRobyn]

All I can say is that if you don't know the prognosis, it keeps you in the now, in the every day and it helps you to realise how to appreciate life.

How do you cope with the non-sleep, do you carry her in a carrier? Does she come and sleep in your bed with you? I hope you have some support.

[srguitargirl]

see thats the thing most children or babies that have Dysplastic Kidneys have multicystic kidney, and Scarlett does not so that is confusing her dr's. So yes your thinking the right thing but we are lucky enough not to get the cysts as part of her condition otherwise it would have meant a kidney transplant sometime in her first 4 yrs of life, and well her match is her daddy and he has Globnebularnephritis which is another kidney disorder so he can't give her a kidney :no:
but yeah gotta love the cool names LOL the dr's at the hospital LOL at me cause I already knew so much about kidney disorders they didn't have to explain much they said I was one of the calmest mum's heck I said it could have been worse antyhign else wrong and I would have been a wreck as I know my kidney issues thanks to dh ! Gotta love him for that.

[kiwibird27]

Hello Robyn nice to meet u, Thanks for explaination, My daughter has Congenital disorder of Glycosylation type 1a, Metabolic condition making life challenging but good. She is happy and fun to be around!!!!

[DoulaRobyn]

Shauna - yeah I always have lots of questions but I am also known as a calm mum! They told me that my third childs fingers would all be fused together, and I had a little cry and said, "no they wont" and they weren't!!! I believe that sometimes mums just 'know' and I trust in that intuition. They asked why I cried and I said it was because I was upset that a dr would tell parents that when they didn't really know, they just suspected. I believe you take it how it comes, not how you think it might be in the worst possible circumstances. Its great that you understand her condition and also she doesn't suffer with cysts :)

kiwibird27 - sounds like Megan has a wonderful personality and that is the important thing. I am going to go google her condition as I haven't heard of it before, how interesting! - ahh yes I know it now, but as carbohydrate-deficient glycoprotein syndrome, what a mouthful!

[naiwen]

Hello,

You already know me but Edward has lots of lung issues relating to his prematurity and collapses (which cause scarring). He is a very happy boy though unless you try and feed him!

Hi Robyn no syndromes here but lots of understanding. Were your bubs full term (I ask everyone this lol).

I like to think of myself as the premmie ambassador on bubhub hehe.

[DoulaRobyn]

naiwen - my first was four weeks overdue!!! Youchy at 4.18kgs! Second was 38 weeks, third was 37 weeks and my tiniest, forth was hrmm 38 weeks I think. I suffered pre-eclampsia with my last three and had to be induced because of that, my first one had to be induced because he didnt want to come out!!! I feel for your little boy Edward and his lung troubles, I had pluerisy a couple of years ago, out of the blue and I have a new respect for people with lung issues. I have scarring in my lungs too and I feel it when I walk up hills, so here is to his lungs becoming easier for him to use in time and for mine too!!! *takes a deep breath* - makes you really appreciate being able to breathe properly.

About premmies, my mums friend had her little girl at 26 weeks (this is going back 16 years now) and she was the first baby born in australia under 250g to not have any lasting issues (the only thing is that she is missing the middle part of her nose inside because her nose grew around her feeding tubes). My mum was actually her nanny and we had her at our house growing up for 13 hours a day - oh the projectiling from the weeniest, tiniest baby was amazing - and gross!! haha I told my mums friend that her baby looked like the cutest monkey I had ever seen, I really didn't mean it in a nasty way and she cried at me, I felt so bad, and kept saying 'but I said cute!' and we all ended up laughing together. Little Ashley came home after spending her first 5 months of life in hospital and today, dispite being a little short for her family (she is 5 foot on her tall days!) she is a happy and healthy girl - actually she told me she wasn't a girl the other day and made me feel very old! ----- so there is your premmie baby story fix for the day ;)

[kiwibird27]

Thats it Robyn thats the old name!!! Here is her story

http://www.cdgs.com/_storymeg.html

[DoulaRobyn]

Oh she is gorgeous kiwibird27!!! Look at all that hair! I know a little about this illness because my three girls have been tested for it, esp my last one, as they all had trouble gaining as tiny things, for the middle two it is because of the sydnrome, but for the last one it became apparent after testing that my breast milk has no fat and is also missing some other important vitamins so the poor things, even with me breastfeeding 24/7, carrying them around in slings, became malnutritianed. It seemed to affect my youngest the most and she ended up in hospital with a feeding tube, seeing those pics bought that back for me, I still do feel a bit guilty..... but it is the darned syndrome in me that means that my mammary glands don't produce 'good' milk! *I say this half serious and half jokingly* I still think I have some guilt issues to work through on this.

Do you guys have any guilt about the early days and not being able to diagnose their problems yourself - this is something that I deal with every now and again until hubby explains to me that I am not a Dr!!!

[naiwen]

Well I think all SN mummys know about the guilt, when Edward was 8 weeks old I walked into SCN and knew immeadiatly something was wrong, he was white, blue around the lips, green vomit and just...not him. I called the head nurse over. It transpired he had RSV and a collapsing lung. He ended up back in NICU for 2 weeks. I always wonder if I had got to the hospital earlier that day I could have spotted it and got him on CPAP sooner and spared part of his lung collapse. Thats just one example of the guilt but I am learning to live with it. Even though I tried my best pre and post birth I always wonder if the was something more I could of done.
The thing is though, we SN mummys are the lucky ones...because all those desperate moments we had when our bubs were critical, turned out ok. They are alive and no matter how disabled that is all that matters.

[SuzeQ]

Hi all

I did introduce myself ages ago - but i'm a bit slack and have trouble keeping up with you guys too:) My Liv is now 7 months corrected, on 20hr continuous feeds, neocate and oemaprozole, severe reflux and not prgressing at all with that or her feeds. developmentally doing Ok, but needing an MRI (small head growth) and now a referral to genetics (just in case). Really hoping for a little advice - her tape is giving her really bad rashes (tried mefix, comfeel and micropore as a base then leukoplast on top - now using tegaderm. Using Dermeze for the rashes. Also, investigating different pumps (have a Kangarro - 'flow error!!!') and am trying to push for a PEG, cos really thinking we will be doing this for a while yet, and i am OVER the tube. not to mention that she is over it too and pulling (or spewing) it out regularly now - usually at 2.30 in the morning!!

thanks for listening!!

Suz

[kiwibird27]

My daughters on 20 hrs continuous too!!! when Mikenzeesmum gets on here she will tell u jpw to get a free backpack pump from the Neocate people, It's not a kangaroo and she LOVES it. Write more soon....Push for the peg, but if u eventually need a fundo do them both together!!!

[SuzeQ]

Do you know if the feeding sets/bags etc are supplied by the company too? At the moment they are being supplied by the hospital through the HEN program we are on - and i don't know what would happen if i was to change pumps. And the ones we are using now are quite expensive.

How much of a pain are the continuous??!!!! Don't get me wrong...it's nice not to have to get up to feed her, but i still get up a few times a night to clean up spew and three times this week she has spewed/pushed her tube up in the middle of the night. And i have been waiting till morning to put a new one down...:no:naughty i know cos then she is down in her mLs for the day but i figure she will just spew it up anyway!! But still needing to wash tubes, kids, change sheets etc. And Liv has a cold at the moment, so i stopped counting after 12 vomits for yesterday! i have washing coming out of my ears!!

How long have you been doing continuous? what pump do you have? Do you have any pointers on how to convince my (conservative) pead it's time to start looking at the PEG and fundo...and how is your little ones reflux after the fundo? Oh, hope thats not too many questions:o

Suz

[Nowhere]

hey Nutricia (neocate people) supply the Infinity pump for FREE yes and its great for contiuos feeds fits in litle back pack etc can be tiped over upside down etc and no flow errors ( with in reason lol) they dont supply the feed lines they are bottle tops that fit on any 40mm wide botle opening and are around 5 dollars each you can very eailsy get a week out of one line they say a a day but thats if your loaded lol, there are bags available for it also on the US ebay but the people suplying the pump prefer you use there lines KWIM

We have been on continuos feeds for near on 2 years, my DD feeds into her intestines to bypas her stomach so can only ever be on contiuos feeds, Contiuos feeds dont realy bother us as its prety much allk we have known it is a way of life for us KWIM bolus into the tummy with miki was a joke she could puke as fast as we fed a totaly utter mess.

As for PEG fundo issues my DD has had a fundo and also a PEG she now has a PEGJ and is soon to get a jejenostomy as well so wil have 2 seperate butons PEG and a PEJ, the main adive is would give before looking getting a fundo is look into what is causing the reflux, has a gastric empptying study been done yet if not i would get that done to see is the motility is causing the reflux etc, If it is then even though the fundo might still need to be done they will look at other ways of feeding rather then into the stomach and herniating the fundo KWIM, also they may try difernt meds to help emptying

In my opinion a PEG is alot better then a NGT if it is going to be long term wich by the sound of it yur litle one will be, also of GIs are aprehensive about putting a PEG in a so called neuroligicaly sound baby KWIM i know ours was but in saying that we have since found my DD is far from neurologicaly normal but any way thats why we had a NGT for 15 months we then moved to a PEG for about 4 months and things still didnt work and thats when we moved to a PEGJ and it was the best thing we ever did for Miki as she is now grwoing still extreamly slowly but never the less growing

[kiwibird27]

Megan was on TPN for several months then has been tube fed for the rest of her life. She was fed jejunally but after her fundo at 1 and a half, we finally got our gastric peg. Megan used to vomit 40 + times a day on jejunal feeds. from about 6 months old she learn't to roll over onto her side when she threw up, it just became habit. I used to sleep her on a towel with a pillow case over the top, so I could just get up and take off a layer before staggering back to bed. Sitting her in a car seat inside worked well too,.

We have a kangaroo 2100 backpack pump. I love it. DD has dev delay, so she doesn't carry it around. I think the error flow is bad when they start to carry them themselves?? We get our equipment through PADP, it's a governement run thing through the hospital, Melb should have the same thing. Costs us $100 a year for most of the equipment. Sometimes we get more tubes etc if we use too many thru the HEN program. Keep all your receipts, everything over $1500 is tax deductable!!! I put a small ice pack in the kangaroo bag pouch so I can put 8 hrs worth of milk in. Megan has just started tolerating 60mls an hour so we are very happy!!!

You probably need to talk to the Clinical Nurse for gastrostomys at the childrens hospital for advice on pumps, she can also do the application 4 PADP

I agree with Mikenzees mum about the fundo, U will need more tests, If she is refluxing cause of serious bowel issues then a fundo won't help. Megan struggled after the fundo wuth wretching and nausea. It has helped her, but did bring up others issues, she still won't take over 60ml bolus feeds so we are still on continuous. She has slow bowel motility caused by a metabolic condition.

Sometimes the NGT can cause worse reflux bcause the tube holds the stomach open. The doctors will advise u of wot is best for her though. We had a complication of a perforated bowel due to a NJ tube so our fundo was put off. Also if they are gaining weight and not aspirating they like them to get better before surgery!!!

Topes, Megan was pretty good with it, We used Duoderm then the tube then leuko.

[SuzeQ]

Liv was tolerating really well the continuous - about three 20mL spews a day - which was awesome compared to what she was doing. this last week however with having been a bit sick has sent the spewing - really really refluxing - throught the roof. this week we have had blood a few times (after tube reinsertion) and bile. Not pretty and she has been miserable...not to mention mummy!!!

They haven't done a gastic emptying study but she has done a couple of barium and ultrasounds - no pyloric stenosis and grade 3/4 reflux. I do want to get a scope done though and now with the blood i think we are entitled! she is on dom peridone to help gastric emptying. You are right about them not wanting to do the PEG on a neurologically sound baby - "she will grow out of it"but when? She is so far from bolus feeds let alone taking those bolus orally its not funny. and i don't feel the gag reflex will get better till the tube is out. but what do i know - i'm just the mum!! I figure, get rid of the tube and reduce the negativity and see what happens...

But for everything i have heard, the PEG seems to be the way to go. Have you any ideas for different tape to use? And where do i start with sussing out a new pump?

[SuzeQ]

sorry Kiwibird..it took me soo long to type that i didn't see yours!!!! Thats my feeling with the ng tube making reflux worse. Will call our gastro tomo to have a consult and get the ball rolling on some tests :)

[Nowhere]

hey the number to call about the free pump is 1800884367 thats the nutricia homeward hens line and just tell them that your DD is on neocate and that you are interested in getting the INFINITY feeding pump make sure you speciafy infinity so that you dont get the other one, they wil send it out totaly free, you wil just need to buy a box of 30 feed lines with is about 175 from memery and a coup0le of the 500m colapsable containers that fit on them and you will be sorted for months and months

I agree by the way about the NG tubes they are a pain in the but we hated DDs her peg is so much easier and better

[SuzeQ]

Thankyou both so much...i don't think there is anywhere else to go to chat and get some real and relevant advice. It is very nice to know that there are other people out there who have done this and can help navigate this arduous journey which is tube fed babies!!!

Now i have some calls to make...:)

[kiwibird27]

Wow they usually use E mycin on little babies, they took u straight to the good stuff. They usually give u Zantac when they start throwing blood. You may notice a difference when on Losec and Zantac too. The combo worked well on Megan, only chucked 30 times a day!!!

I know it's frustarting, it all takes time, alot of time!!!!!

[Cherylanne]

Hi
I don't get in here very often, my DS(6) has Epilepsy, CP, Scoliosis,Intellectual Disability, Cortical Vision Impairment,Reflux, and is button fed.
I'll try and get in more often and chat.
C:)

[naomis mum]

well, not sure if i belong as dd has not so severe issues (well not that are dx) but she is seeing specialists looking into some sort of incoordination, muscle and speech syndrome, she has ataxia, severe expressive language delay, slow gut motility, mildly redundant sigmoid colon causing chronic constipation, reflux that is under control atm and is also being tested for metabolic disorders and possibly ASD or dyspraxia at present...i think thats about it.

[jessgray]

i havent been posting for a while:wave: DS1 is 3 now and his talking has picked up alot :thumbsup: not many people understand him except for myself and DP. Which I am used to anyway.
for those who dont know me
I'm jess i am from Melton vic (formerly geelong) my DS1 is yet to be diagnosed. He has an expressive speech delay which he sees a speech therapist for. He also has various allergy related things like eczema and asthma.
DS2 has a dermoid cyst on his temple i am told its harmless its been there since birth and he also has a bright red raised birth mark on his wrist

[kitty galore]

Hi All, have been trying to get the hang of all this over the last couple of weeks, so forgive me for my lack of abbr. etc!
My name is Nicole and my 2 and 1/2 yr old daughter has cerebral palsy (right side hemi).
it is very mild, but all the same, we (she!!) work very hard with physio, OT and lots of other activities.
Amelie was diagnosed very early on, and we got 'in the system' very quickly (thank goodness!). She has just completed a 2nd lot of botox in both her leg and hand/arm and it is working fantastically! very happy with results so far!
Anyway, I just thought i would introduce myself and say Hi,

BTW - thanks girls the other day for recommending comfort and fit shoes. had a bit of a fitting, tried a few dif shoes, but amelie's new AFO is hinged and seems to be causing problems for shoes. we did order some sandals though - so thank you! :)

Nicole
:flowerz:

[mummyof5]

Some of you on here know who I am already. I don't get on these threads much these days.
My son Jock has suspected agenisis of corpus callosum, (physical symptoms of longsightedness and strabismus, hearing problems, chronic failure to thrive small head size, inability to cross his midline, clumsiness, no impulse control, hyperactivity, etc) as well as high functioning autism and a mild intellectual disability. He is either completely gorgeous and sweet or completely feral, lol.
At the moment I am trying to organise for him to go to a special school next year, only prob being that it is in Victoria, and we currently live in NSW! He is not considered disabled enough up here to get the help he really needs in a school setting.
I love reading about how all your kids are going, it's great.
Jess, good to see you in here again, glad to hear your boy is getting speech and coming along.
Stacey, Megan looks so much more grown up in every avatar pic.:)

Kylie.

[Loopy Linda]

mummy of 5 what school is it in victoria? how about more in sydney? have you heard about mater dei school? it looks very good, it is in camden. and also in sydney metropolitan area there are many public special schools that look very good too.

have you gotten a date for a MRI yet? also i was speaking to another mum who needed nuero services, she lives closer to westmead childrens hospital but was told the wait there is very long and is being seen straight away through randwick children's maybe you could ask your dr to look into that for you. just a thought

[naomis mum]

it depends who the neuro is. I know that mine is booked solid for most of the year. We got in to her in liverpool clinic, but we normally see her at randwick. It depends how urgent she thinks your case is. You have to call and the secretary will leave a message. PM me if you want her number.....

[Loopy Linda]

naomis mum, person i was talking about got into your nuero, must have been considered urgent. but she was told she would be on a waiting list at westmead.

[naomis mum]

yer they are good in urgent cases. She got us in the next week first and then the next day second time round. Was it Dr Bye? She is the best.....

[Loopy Linda]

yep that was the one. that is why i suggested to mummyof5 if she was being delayed at westmead, just to let her know might not be case at randwick

[mummyof5]

JKG Mum, it is Naranga Special School in Frankston (which works with DH being able to post ashore in Vic next year). It is specifically for children with mild intellectual disabilities, and is a prep to year 12 school. In NSW, he isn't "bad enough" (the peads words, not mine) for even a full time aide in the classroom, nor is he disabled enough to go into a gated classroom, but, get this, he has his file marked that he is a flight risk, so needs playground supervision! Gee's that will help him not to disturb the entire class all day, won't it! He gets quite abusive when he is stressed or angry, so he is likely to spend half his time suspended for swearing at the teachers. See why I am looking at Vic?
Haven't heard anything about his MRI, am going to call Hunter Genetics, as I need some tests done on my other children for their Fragile X syndrome carrier status (a secondry finding from Jock's tests is that youngest daughter and I are both carriers), so I will ask them if they can reqest one through John hunter, that should be quicker. Only reason I asked at Westmead in the 1st place was because they had just seen him, to do a neurophyscology (sp?) assessment and as I no longer have a pead up here, I thought it would be easier for them to request it. Silly hey.

[kiwibird27]

Some of you on here know who I am already. I don't get on these threads much these days.
My son Jock has suspected agenisis of corpus callosum, (physical symptoms of longsightedness and strabismus, hearing problems, chronic failure to thrive small head size, inability to cross his midline, clumsiness, no impulse control, hyperactivity, etc) as well as high functioning autism and a mild intellectual disability. He is either completely gorgeous and sweet or completely feral, lol.
At the moment I am trying to organise for him to go to a special school next year, only prob being that it is in Victoria, and we currently live in NSW! He is not considered disabled enough up here to get the help he really needs in a school setting.
I love reading about how all your kids are going, it's great.
Jess, good to see you in here again, glad to hear your boy is getting speech and coming along.
Stacey, Megan looks so much more grown up in every avatar pic.:)

Kylie.

Thanks Mummy of 5, Mater Dei would b perfect, Also with the hearing loss u could get into the Royal Institute for the deaf and Blind school @ North Rocks, They ARE BRILLANT, I want Megan to go there cause she uses there Early Intervention program which is fantatic, however they also only take mild - moderate cognitive ability children, which may work 4 u!!!

http://www.ridbc.org.au/services/md_schoolaged.asp

Can't remember where u live though!!!

[Loopy Linda]

mummy to 5 thats not silly. i would never have known about it being faster at a different hospy, jus tthat this other lady told me her situation the other night and then when i seen your post i thought i would let you know. i just went to hospy my dr preferred and agreed to whatever he said, sometimes i think if you find a dr you feel you can trust you don't second guess and you just accept what he says.

as for your son's school i can see why nsw stinks, my eldest son had a boy in his class for the last 2 years of primary that was aspergers and other stuff. he was also abusive and disruptive. the fact that he could swear at the teachers and throw stuff at them then walk around king of the rest of the kids drove me mad. my son also idolised this kid and started to copy his attitude. i don't blame the kid at all, everyone needs an education but the school just handled it terribly.

good luck

[mummyof5]

Today I got a release form from the child development unit at Westmead. I rang them after speaking to the school who needed his IQ breakdown. CDU hadn't supplied me with it, just told me he has a mild intellectual disablity. When I rang CDU to ask for her breakdown, they told me they can't give it to me, cause I am not a clinical phsycologist. BUT I would need to sign a release form to give them permission to supply the information to the said phsycologist (or school councelor in this case). Hopefully we will get enrollment papers soon :fingerscrossed:
Now if the MRI details would just turn up!:mad:

[Loopy Linda]

mummy of 5 it stinks that they wouldn't give you the papers. i would be asking the school councillor for a copy of that for your records. good luck with your waiting. waiting stinks aswell!

[mummyof5]

Still no word from the school, will follow up with them when I get back from Darwin (off to meet up with the gorgeous hubby while he is on depoyment!!:valentine:).

Exciting news for the day is....Jock's MRI appointment is happening.:smiliedance:
Not till September 10, so :fingerscrossed: nothing drastic happens to stuff up the day surgery list before then, but it does fall in the 4 week window when DH will be alongside between deployments, so I am very excited.

[Teley]

Hey, I'm Kat.
My DS just turned 3, we're still waiting for specialists to see him (on public health waiting line). So far the doctor just thinks it's speech delay. My intuition and my observations make me think it's something else with his speech. I remember people telling me how funny the sounds were that he was making at 5 months, which is when he started making his first sounds, and I had this nagging thought at the back of my head, it is kind of funny, but they're a bit strange. By 12 months I had this feeling something was wrong just by the really bizarre sounds he was making, but people just thought it was funny and it was clearly far too early to talk about speech at that point. For instance, DS is sitting with me right now, and he's telling me "the blue one says no" (:no:), but it sounds like "d' b'uy wa'n ez no'u".
Very tiring by the end of the day learning how to translate everything:ecomcity::hair::sleeping:!

But anyway, enough ranting. Hi:wave: to everyone from me and my little man:D.