How many of us are there??? [Archive] - Bub Hub Pregnancy & Parenting Forum

gremily

15-02-2007, 06:45

I dont know if i fit in here.

Our children may have different levels of disabilities, whether it be a crippling disease or a minor ailment, but they are all children with Special Needs:hugs: . So yes, you fit in here:)
When dd2 was younger I wouldn't have wanted to be in here (no offence!!) but I've come to accept and realise that we do belong here, I do have a special daughter, but it's not necessarily a bad thing. While all kids are special, I just have an extra special one! And the help and support I've received from the other BHer's has guided and uplifted me throughout my BH life.

kiwibird27

15-02-2007, 07:05

Can I?

15-02-2007, 08:23

My DS2 who is 4 has autism (mild, high functioning).

Gloominous

15-02-2007, 10:01

I thought maybe I didnt fit in here either as it's not a physical or major mental disability, but you've set me straight!

DD #1 has a stutter, speech language delay, developmentally delayed and suspected central auditary processing disorder.

sarahbelle

15-02-2007, 13:39

Hi Guys

I don't have a child with special needs so I really don't fit in here. I did however work with children and their families with special needs of all sorts for years. I have seen the good and the bad or these families and shared many of these with them.

I just wanted to take the time to say you are also very special as parents and hang in there when times get tough! It takes lots of patience and perseverance but it is all worth it!

Just remember your children may have special needs but you are truly special parents!

Love Sarah

kiwibird27

15-02-2007, 16:29

It's funny u say that, lots of people tell me I'm must be special to raise my daughter, but actually I just feel like a normal person getting on however I can. Thank-you for your thoughts

MamaRabbit

15-02-2007, 19:41

Hello, my Charlie has PNH (a neurological condition) and has significant development delay in all areas. He's been on medication his whole life (2 years), he came off them on 20 Jan and is now completely med free. He is alot more switched on since coming off them so we are striving for big things this year
:smiliedance:

maddys_mum

15-02-2007, 20:18

My DD has cerebral Palsy.

will&samsmum

16-02-2007, 22:49

Hi....our beautiful boy William has a rare brain condition called Periventricular Nodular Heterotopia. As a result of this he suffers complex epilepsy and is very developmentally delayed. We do some sort of therapy everey day to help his progress. He is on lots of medication. He is a lovely happy gentle little soul.......my world. ;)

anjelaszka

17-02-2007, 12:39

My daughter is six months old and has Lissencephaly which is also a rare brain condition with complex epilepsy, on lots of anticonvulsants but doing well, out of hospital for two whole weeks this time around and fingers crossed we get to stay home for longer than that this time.

jessgray

17-02-2007, 15:31

Just remember your children may have special needs but you are truly special parents!

sometimes i wonder if what ppl say to me is true, they say i am doign a great job with my ds1 but i always think to myself things like "if i am doing such a greta job why cant i get him to talk?" :(
on good days i'm happy to tell anyone how he communicated that he wanted some more milk :laughing: or that his nappy is full and i dont listen and he throws a nappy or bottle at me lol

i dont feel special i just do what seems like normal to me:D

jessgray

17-02-2007, 15:35

Our children may have different levels of disabilities, whether it be a crippling disease or a minor ailment, but they are all children with Special Needs:hugs: . So yes, you fit in here:)
When dd2 was younger I wouldn't have wanted to be in here (no offence!!) but I've come to accept and realise that we do belong here, I do have a special daughter, but it's not necessarily a bad thing. While all kids are special, I just have an extra special one! And the help and support I've received from the other BHer's has guided and uplifted me throughout my BH life.

:yelclap: i totally agree. i try not to go into the development section on my "pity party " days lol coz i always feel bad readign them coz my ds1 isnt like those kids. but i just think now everything he does is extra special.
even though we dont have a offical diagnosis yet (tuesday coming for ENT) it doesnt mean it doesnt affect his life or mine or dp's or ds2's.

Lunar

17-02-2007, 15:36

i dont feel special i just do what seems like normal to me:D

That's right!!!

I always get ppl saying to me "i don't know how you do it!?!" I just say, well, that;s my DD, I just do what every other decent parent does and that's love my child and do the best for her.

We are but parents, doing what any other parent does for their child, love and support them.:yes: :kiss:

jessgray

17-02-2007, 15:43

:yes: i just take each day as it comes, i think if i worried about yesturday i would cry, if i worried about tomororw i would be a nut ball:laughing:

Lunar

17-02-2007, 15:48

I'm the same as you Jess,

I try not to think about the future. I know other parents think way too much about what their children are going to be like in their adult years, and the what if's etc, but if I do that I will cry. I need to live for TODAY, really, that's all that matters.
:hugs: to you hun, if you ever feels sad or that it's getting on top of you, you know were I am;)

kiwibird27

17-02-2007, 17:57

jessgray

18-02-2007, 06:49

"IF THERE IS ANYTHING I CAN DO" Send me money,

;) i like that one:laughing:

Lunar

18-02-2007, 09:54

My favourite sayings

"HOW DO YOU COPE" I don't, I cry in the corner on occasion

"YOU MUST BE VERY SPECIAL" No I'm ****ing normal

"IF THERE IS ANYTHING I CAN DO" Send me money, fix my child

I know people only mean well though........ Sorry to people reading this who might get offended

ha ha, you're a crack up!
When ppl say to me
"Oh, I'm so sorry"
I'm like... what ya do??? Fart?..PMSL!
No seriously, I say to them..
"why?!"
person; "because she has d/s"
me: I feel sorry for narrow minded ppl like you!"

gremily

18-02-2007, 11:49

I think some ppl mean well most of the time. I had a d.s. girl in my dance class at school, she was great and had such a loving family. But we always used to wonder how they managed, etc. They had 5 kids and she was the 2nd eldest, so it's not like it put them off having anymore kids. But I guess it's a common misconception and made out to be extremely hard so ppl assume it must be such a terrible life for the parents.

Sometimes I wonder if a small majority of ppl think we should do like earlier in the 20th century - you have a child with a syndrome, they get taken away to a "home" and you never see or hear of them. Because we can't possibly love a child like that:rolleyes: .
Like alot of things, we are becoming more knowledgable, there are better services, etc and there is finally a realisation that yes, we can love children with syndromes! To us, the parents, they are completely normal. There is no defining line that makes us not love our children any less than a child without a syndrome. It may mean we have some extra things to do - appointments, caring, etc - but hey, I love my life and my extra special girl:kiss:

jessgray

19-02-2007, 01:10

i went to high school with a girl who had d.S and she caught the bus with me and my friends to school. her younger bro was my age and he went to a boys school while us girls were at a girls school. she used to yell at me very day for checking out her bro:o :laughing:
she represented australia in gymnastics and went to canada for the special olympics :D she got gold, silver and when she came back to school there was a big assembly just for her.:party:

mummyof5

19-02-2007, 04:51

My DS2 is a living breathing ?. He is right up there with Maia, because we know he has a syndrome or metabolic disorder or a spectrum disorder, or even a combination of all 3, but which one/s???? He has a 12-18 month delay, small stature, microcephaly (sp?), some sensory issues, wonking hearing, wonky sight, the list goes on...oh and his sister has just been diagnosed as a carrier of one syndrome he supposedly doesn't have:confused: . I'll get back to you on that one!!
That said, have to agree with you all, it's nice that people are concerned, but what else are we to do except raise our beautiful babies as best we can?? Although on the *pity party* days (love that expression, Jess), I would gladly give him away, he's still my (very little) boy, and I love him just the same as the other's (incidently there are days I would give them away too:D ). So that makes me a pretty normal parent, I think....

kiwibird27

19-02-2007, 06:42

"pity Party" I like that!!!! I know people only mean well, and I guess they just don't know what to say!!!! I get the "Oh I'm so sorry" thing too alot.the thing is I am really proud of my special daughter and don't know why they are saying sorry!!! People also repeat alot "she will be okay won't she?" People seem to need to know that eventually everything will be okay. I have learn't just to say yes.

Mummy of 5, what is microcephaly???? We need to start a new thread, guess that disorder (LOL).......I have a strange sense of humour.

gremily

19-02-2007, 11:16

Mummy of 5, what is microcephaly???? We need to start a new thread, guess that disorder (LOL).......I have a strange sense of humour.

:laughing: I'm sure there'd be some interesting responses!

Microcephaly - I don't know but with micro that would be small (as mummyof5 said he is small:) ) but the cephaly bit I can't work that out. I have no idea how they come up with these words! I think they make them up so the Dr's sound really professtional:D

mummyof5

19-02-2007, 12:45

[QUOTE=gremily;1129291
Microcephaly - I don't know but with micro that would be small (as mummyof5 said he is small:) ) but the cephaly bit I can't work that out. I have no idea how they come up with these words! I think they make them up so the Dr's sound really professtional:D[/QUOTE]

I think you are right!!:laughing: . microcephaly is just Dr speak for a head that is smaller than it should be. Having said that, it is in proportion to the rest of him, cause all of him is smaller than it should be:yes: .

anjelaszka

19-02-2007, 15:04

Microcephaly means "small head" just sounds better to the drs that way I guess, my daughter has microcephaly (a small head) and Lissencephaly (smooth brain) gotta love it :)

kiwibird27

19-02-2007, 19:29

Funny the things they put on the list trying to figure out disorders!!!!! I had tonnes of medical students coming to ask if they could see my daughters VERY inverted nipples!!!

anjelaszka

19-02-2007, 19:33

You think that's cool, Ags has a dimple on her bum EVERYONE wants a squiz at ;)

jessgray

20-02-2007, 21:01

i was having a bit of a pity party just before :laughing: then CSI came on :laughing:

matty's mum

20-02-2007, 23:13

Hi My son has down Syndrome, I don�t really want to be part of this group. I have three other children my first son was born with a Cleft Lip and Palate not that is really introspective �it�s just missing some skin�.
I don�t see myself as a mum with a �special need child� kind of odd that title belongs to those others mum lol How strange to be a mother for 16yrs then to find myself with this label.

I must say I have changed, changed forever. Still am me but have grown so much more than I could have ever realised. I�m so grateful to have a baby with Ds.
I the early days I would cry thinking towards the future, now I cant wait, I feel excited just as I do with my other children.

gremily

21-02-2007, 06:11

I must say I have changed, changed forever. Still am me but have grown so much more than I could have ever realised. I�m so grateful to have a baby with Ds.
I the early days I would cry thinking towards the future, now I cant wait, I feel excited just as I do with my other children.

I like that. I often look back and can see how much I've grown, how much stronger I am now and how much more I can cope with.

I think crying in those early days is pretty common:yes: .

kiwibird27

21-02-2007, 06:39

Welcome Mattys mum, Know exactly how u feel!!!!! I think we are all forever changed!!! I look at my daughter and all I see is her.......... not her "special needs". The people in this thread though know exactly what we all go thru on a daily basis!!!

Can I?

22-02-2007, 12:49

I don�t see myself as a mum with a �special need child� kind of odd that title belongs to those others mum lol How strange to be a mother for 16yrs then to find myself with this label.

I remember saying this myself at some point. It's like having to wear a hat you never picked out for yourself. It doesn't fit right, it's the wrong colour and what's the deal with the stupid feather? Sure the hat would look great on someone else, but it's not really you. I think it grows on you and then one day you realise you don't feel right without the hat. It's become a part of who you are after all.

I had a look at the link in your signature and your little guy is adorable. What beautiful eyes! Gorgeous.

Lunar

22-02-2007, 15:22

I remember saying this myself at some point. It's like having to wear a hat you never picked out for yourself. It doesn't fit right, it's the wrong colour and what's the deal with the stupid feather? Sure the hat would look great on someone else, but it's not really you. I think it grows on you and then one day you realise you don't feel right without the hat. It's become a part of who you are after all.

I had a look at the link in your signature and your little guy is adorable. What beautiful eyes! Gorgeous.

See, i don't feel like this at all.
My DD is who she is, she was meant to be the way she is. To me, she is no different to any other child.
She has that same needs and wants as every other... food, love, shelter, stimulation, etc.

Has anyone read the poem "Welcome to Holland"...?
THIS is how I felt for a while but now it's just ife, move on and enjoy what's in front of you I say.
For those whi have not read it, it's about a person who plans a trip to Italy, they learn some frases and words in Italian, pack their clothes accordingly, have all the maps etc etc for Italy, and when the plane lands the announcer comes on and says "Welcome to Holland"....
the moral of the wonderful poem is that one 'plans' for the baby they have invisioned and when we get our 'special' little bundles, our 'plans' all fly out the window. "Holland' is beautiful, yes, but not 'Italy'. We planned for Italy, but Holland is where we have to stay. So we have to learn the language, buy new clothes etc etc. Italy would have been beautiful, but once in Holland, you soon realise that it too is beautiful, yes in different ways, but Holland can be perfect too.

I will try and find it for those who haven't seen it, it is really beautiful.

mummyof5

22-02-2007, 15:35

Yep, I have read that one, Lunar and it is so true!

Matty's mum, your boy is beautiful...

matty's mum

23-02-2007, 17:50

I took the feather hat very much the same way as �Holland� the mum at first felt lost and her child was different then got used to it and has embraced it.
It�s hard to know sometimes how to word things.
You know I like to think some days that the early days are behind me then (never like it first did) I think heck am I kidding myself this kid of mine has Down syndrome holly **** and I�m talking and walking around like nothings wrong have I had a compete mental breakdown? Then I realise those feelings come from the old me the me that was scared to death, the me that didn�t want to join any �special needs group of mums� One day I hope it is all gone but then remembering the ignorance I came from will really help me in the face of other ignorant people. I will gain strength from the old me and remember how much people (myself ) have changed.
I should say I wasn�t terrible and I never spoke terribly of people with different needs nor did I ever want testing, but I was ignorant to all of this all the same.

Mummy of 5 thanks he is a cutie you can check out more of Aden�s photo�s on our site at http://5kennysplace.spaces.live.com/photos/?&_c02_owner=1
My children are Michael
Tayla
Matthew and Aden we have some of the Nieces and nephews on there too so don�t want you all to mistake them for my kids..

jessgray

23-02-2007, 20:21

i havent heard that poem can you post it :D

Lunar

23-02-2007, 20:23

"Welcome to Holland"

By Emily Perl Kingsley, 1987. All rights reserved.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

jessgray

23-02-2007, 20:30

:hugs: thanks for posting it
thats such a great poem, that sums up how i feel some days

Lunar

23-02-2007, 22:05

...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

THIS is what matters:yes: I wake up and think this everday.......

If I did not have Emily, I would not be the person I am today.

jessgray

24-02-2007, 07:38

:hugs: thats so true:yes:
i have noticed ppl talk slowly to cody like he is slow when i say he cannot hear them very well so speak a bit louder.
cody knows how to se a computer so i dont think he is slow:laughing: he likes to type to ppl on msn:laughing:

Lunar

24-02-2007, 08:15

Jess, I have ppl talk loud to Em sometimes... I just say, (loudly) SHE'S NOT DEAF! derrr! Some plpe mean well, but what they really need is a clue:p :laughing:

MountainGirl

27-02-2007, 05:53

mumoftwoboys2005

27-02-2007, 07:18

kiwibird27

27-02-2007, 09:17

Hi guys,..... I hope you dont mind me crashing your thread,...I just wanted to say that I love coming to this section to hear about what all your little ones are up to,...it is one of the only sections where people post positive developments (not so positive ones too - I get that!:D ) about their kids,...so when I get tired of hearing about sleepless nights,.whinges about kids not eating, not sleeping, playing in their own poo etc, I come in here and read about some cool progress, or just what your babies did that day, and go yay:smiliedance: !take care all!:)

Thanks.I think if we focused on the negatives we would probably all jump off bridges. )LOL)........I have learn't to take pleasure in the little things. Megan giggled yesterday when i poked out my tongue.That is huge!!!!!

Issues like feeding and sleepless nights just don't seem to matter when you see your child critically ill!!!

Can I?

27-02-2007, 10:06

Yay Megan :smiliedance:

Giggling is by far one of the cutest things to do. I love those little chuckles. So how many times did you try it to see if she would do it again? ;)

vikki a

27-02-2007, 14:17

Hi all,:wave:
Well lets see; My DD 1 had speech problems, but after 6 1/2 years of thearpy shes pretty good now:smiliedance:
My DS 2 has eczema
And my DS 1 has Asperges syndrome, asthma, kidney problems and his sensory system has its wires crossed.(the easy way to put it) Which means he doesnt feel the same way we do, so he can hurt himself pretty badly and not know it. He picks holes in his skin and chews everything.. Hes the one that makes my life interresting!!
And i waiting to see what DD 2 can come up with!!:D

Purple Spider

27-02-2007, 17:14

My 4 1/2 year old has recently been diagnoised as ASD, probably high functioning autistic but not too sure yet.

It is actually a relief. We don't stress so much about what she does since we now know why. She is very creative so makes lots of creative mess. Also doesn't understand that when things are broken they often can't be fixed. Also she scratches herself alot and doesn't like to sleep at night. She says she likes being awake at night. We have still to convince her that she needs to sleep at night.

We have seen an OT which my daughter loves so I am hoping things will improve. It would be lovely to have less screaming from everyone lol.

I also have a 18 month old who is very much a mummies boy. So far he is alot different so hopefully not ASD.

Esther

kiwibird27

27-02-2007, 19:02

Yay Megan :smiliedance:

Giggling is by far one of the cutest things to do. I love those little chuckles. So how many times did you try it to see if she would do it again? ;)

About a hundred. It's like a light has gone on and she as figured out how to respond and to chat.

gremily

27-02-2007, 19:46

And my DS 1 has Asperges syndrome, asthma, kidney problems and his sensory system has its wires crossed.(the easy way to put it) Which means he doesnt feel the same way we do, so he can hurt himself pretty badly and not know it. He picks holes in his skin and chews everything.. Hes the one that makes my life interresting!!

I remember seeing a little girl on Oprah who I'm pretty sure had the same issues of no feeling but maybe more extreme than your son. The parents had to put goggles on her because she kept poking her eyes to the point one went blind and had to be removed. And she broke her rib banging into a table and they had no idea until weeks later. BUT, having said that she was the bubbliest little girl and very adorable! It made you realise how lucky we are to have all senses, something that's really taken for granted.

matty's mum

27-02-2007, 22:54

Hi,

My name is Joanne. Joshua (8) has Aspergers Syndrome, ADHD and ODD (Opposite Defiant Disorder). He also has Audio Processing Difficulty. He can be a bit of a handful some days but he's mine and I love him. Although dropping an entire plate of Coco Pops and milk on his bed is not endearing to me this morning :eek:

His brother who is 2 in June doesn't seem to have any problems other than the fact that he is a ratbag. :yes:

Nice to meet you all. :wave: :wave:

Hi my eldest has the same stuff he's 17yrs now he also has OCD and when stress vocal tics.

My 3yrs old is showing some signs and I'm not sure how I can do another 15yrs or more of it lol. I told DH I'm taking our 1year old (who has Down Syndrome) and running away. I'm really not coping too well with the idea that our 3yrs old might have it.

I'm hear anytime you need to talk feel free to PM me anytime. I might need your strength as I don't feel up to this again.
Sorry to sound like a sad old bag. I really just don�t' know how I will get through it this time I only just survived it with our 17yr old.
I before I start to cry I will go he�s refusing to go to bed and I�m so tired way cant they sleep?

RuthK

28-02-2007, 06:36

My eldest is autistic. We're getting the final formal diagnosis from the Alfred hospital next week through the CAHMS unit as to what degree and what type of ustism it is.

vikki a

28-02-2007, 11:44

Nicholas inst that bad , as the girl on Oprah, or the kid on all staints last night. Thank goodness!! But still bad enough. Once he fell over, hit his head, and cut it in four places to the bone:eek: and he didnt even cry!! Well not till his sister saw him and she started screaming!! All the way to hospatil, and while beening treated, all he was worried about was whats for tea? And that tea would be burnig as it was been cooked at the time!! He still cant tell us what happen or how he did it.. All we can do is guess and follow the blood trail... He must of stood there not knowing what to do, as my DH found the frisbe he was playing with full of blood, and a big pool of blood next to it!!:eek: So its pretty scary to know your child can hurt themsleves pretty bad and doesnt know he did it!!

GreenFrogGirl

01-03-2007, 01:28

My son was 8 weeks premmie and has Hydrocephalus, a developmental delay and low muscle tone. He crawlled at 18 months and walked at 2 years and 3 months. I think he is very special indeed !!! :)

He is now 3 years old and the new challenges I face are his obsessions with bubbles, crying for bubbles, falling over (often) and crying for bubbles (and too many other obsessions relating to other objects to mention!). He takes up a lot of my energy but I persist. I often feel for my 7 month old who doesn't get as much of my time as he should because his brother is so demanding.

kiwibird27

01-03-2007, 07:38

I love bubbles too.Don't blame him they are sooooo pretty (LOL) Welcome!!

Widget

01-03-2007, 13:02

MamaRabbit

01-03-2007, 14:42

Hi Widget, welcome....it's okay feeling like you don't belong in this section (or rather you don't want to belong here), we've all felt like that at some point. At the end of the day it's just the terminology that sounds terrible - special needs, disabilities etc - we really are very nice in here, ordinary every day people with extraordinary children. Wait make that extraordinary people with extraordinary children ;)

I've been coming to terms with my sons very rare condition for 2 years now. I went through my denial stage, then my grieving process, then I bounced into my positive mode and now I just live my life to the absolute fullest. Like most of the mums in here my days are spent juggling physio, speech and OT sessions, doctors appointments, tests, not to mention the endless hours of research I do, maintaining a job which I am lucky enough to do from home in my own time, being a wife and a mum to a 10month old in addition to my 2 year old. It's not easy, and there are days I wonder what I did to deserve such a tough road, but like the saying goes - special children are given to special mums - the ones that can handle it and will give these little angels the best, happiest, most love-filled lives.

I have learned so much from my 2 year old son, he has an amazing character and personality and together we will achieve great things and laugh everyday. He is a true individual - I don't compare his development with the books or other children, nor do I really know what the future holds for him but one thing is for certain.....the fact that I was lucky enough to have him means I will make sure he has the brightest road ahead.

I hope you find the answers you are hoping for, and it would be great to hear from you again - hopefully to say you won't be back in here..... but it's okay if come back just to chat to some nice people in the same boat.

kiwibird27

01-03-2007, 18:16

Hmmm... I'm just going to say a quick Hi for now.

We should find out in a couple of weeks if DD has special needs.

If you're interested, I had a "pity party" the other night and posted in the General Health Section.

I have been avoiding this section since I joined BH, but for some reason, I just had to look today.

I'm sorry if this is a little harsh, but I do really, really hope that I won't be back (apart from to say she has the all clear!) in this section again.

I don't know if she's delayed or anything, as I know a 10 (nearly 11) month old who onlt started crawling last week.

For now I am enjoying my gorgeous well behaved (touch wood) little girl and I'll do my freaking out while she's under the general next week...

Be good ladies and don't get up to too much mischief!!

Just read your other post. I can only speak from my own experience. Sometimes it feels like there is no light at the end of the tunnel, then when u don't think u can take it anymore you find this amazing strength u didn't know u had. You have it too, you just need to go thru the process to find it. Surgeries are awful, but babies are resilient and recover better than u can believe. My daughter has had around 10 operations and countless CT scans etc under a GA, and it's amazing how well they cope. Just like u will!!! Good luck, Let us know how u go!!!!

marcelsmum

06-03-2007, 17:31

Hello everyone..

My DS has Autism, (althou where they want to put him on the spectrum keeps changing.)

When He was first diagnosed I went through the denial period,, I read everybook possible on ASD.... and kept coming up with .. but thats not marcel, he is nothing like that.... It took me a while to realise that the Spectrum is wide and every child is different.. My son does have a disability, but we can work on it to give him as normal a life as possible... I treat him the same as I would any child (Unfortunately we only have the one, not through lack of trying) I love him unconditionally... I would not swap my happy smiling fun little boy for the world... I do not see him as being any more different than any other child... he just can't read as well as some and doesn't have any inhabitions (he is not shy/or socially withdrawn quite the opposite in fact.) - I love the fact that he will hug and cuddle anyone he has spoken to for more than two seconds... I also like his brutal honesty (he says it has he sees it and does not think about the consequences) -- Most of the time --
MUM - you look fat today are you having a baby -- is not neccisarily what you want to hear when you are about to leave to go to work.

- I love my son - every little bit of him...

gremily

06-03-2007, 20:50

Welcome marcelsmum :wave: . It sounds like you have a wonderful son.
I've had the "you look fat today, are you having a baby" line from my dd1 when she was about 5 and she doesn't have a disability:laughing: . You've just gotta love them no matter what:)

mummyof5

07-03-2007, 05:04

Yep, I reckon each of my 3 eldest has asked me that on more than one occassion...though in fairness, they probably do have plenty of reason too:laughing: .
Good to see some new faces here, welcome all of you:wave: .
Am off to the geneticist shortly re Bronte's fragile x carrier status, so that could be interesting. Should have gone on Monday, but Jock had one of his flat spots, where he just gets sick really fast, for no reason, and gets better a day or two, or three later, just as fast...no one can tell my why he does that either:rolleyes: .
Have a good day ladies!

FourAngelKisses

07-03-2007, 05:27

My older son, Jacob, was born with a kidney disorder known as Bilateral Hydronephrosis. His ureters had a blockage and his kidneys were filling with fluid causing swelling and a lot of damage, they were 3 times the size of normal (size of a mans fist) at birth.
He had surgery when he was 3wks and 7wks old and didn't get the all clear until he was 5, though we were told they wouldn't know until he was 7 if the surgery had been successful.
It doesn't impacton him directly these days, but he can't play contact sports and will have to avoid getting hit in the kidneys when he is older as neither of them function properly.

Brooke was born with an incomplete unilateral cleft lip, her palate was unaffected thankfully.
She suffered badly as a baby/toddler with severe reflux, ear infections, tonsilitis, UTI's, conjunctivitis. She was born with glue ear and was deaf until she was 22mths old and had grommets put in. Because of the fluid in her ears, her development was delayed..........she couldn't crawl until she was 10mths old, she couldn't sit until 11mths and she was 2 days short of 15mths when she walked.
Her grommets got blocked when she was 2, resulting in her falling one day and breaking her nose on the coffee table.
She had her lip repaired at 3mths, grommets put in at 22mths, tonsils out at 4yrs and a lip revision (tidy up) at 5yrs.
She is starting her palate expansion this August and will probably have braces fitted in a year or 2 I'm guessing.

When she gets older, she will have to have her upper jaw brought foreward, a nose job, a bone graft and goodness knows what else done.

So while her cleft doesn't affect her directly at this moment, it is a lifelong, ongoing issue.

Widget

27-03-2007, 12:48

Saw the Neurosurgeon this morning...

She has "split cord malformation type 2".

I haven't googled it yet (yes, he told me to google it!)

They'll be operating within the next 5 months.

Just letting you know!

kiwibird27

27-03-2007, 13:48

You have a name and a plan!!!!! Thats a step in the right direction!!!!

gremily

28-03-2007, 18:19

You have a name and a plan!!!!! Thats a step in the right direction!!!!

Argh! Lucky you!!! I'd love a name and a plan:D
Seriously, it's wonderful you now know what direction you're going.:)

my2angels.0306

30-03-2007, 06:53

hi my dd who is 3 is speech and development delayed, she is seeing a speechy and is meeting the criteria to go to a s.e.d.u soon, am going to see paed next week to get assesed, wish us luck:fingerscrossed: :wave:

gremily

30-03-2007, 09:00

Good luck sleeplessmummy:)
I think there are a few other's in here with children who are speech/development delayed and seeing sedu.

trina73

01-04-2007, 16:02

My DS is 3 yrs old and has autism, although we don't know exactly what scale he is on as yet.

kiwibird27

01-04-2007, 17:58

I'm back to work tomorrow, wish me luck!!!!

mummyof5

01-04-2007, 18:02

Ooh, goodluck, have :fingerscrossed: for you...

my2angels.0306

07-04-2007, 14:56

hi, well we have seen the specialist and it looks like our dd has posible autism, we have to get her assessesd again and get more tests done, im ok with the diognosis now, it just conformed what we suspected since she was 2 yrs and now have some solid answers, our dd will be attending an s.e.d u after easter and im looking into getting into a support program.

gremily

08-04-2007, 17:19

:wave: Welcome Sleeplessmummy :)

jessgray

14-04-2007, 19:21

well cody is off to his 1st session with the speechy on tuesday arvo. i dont knwo what to expect really like i havent met the speechy before she seems nice
cody is very wary of new places and people now so i am hoping he doesnt freak out.
since feb when he saw the ENT guys and they pulled wax out he has had some improvement and audiology confirmed he is within normal range nwo for hearing :smiliedance: so its looking like soon i will have a chatterbox on my hands:laughing:
he has started to say "Dohor" for door and "Bhay" for bye and today after sitting there listen to ds2 saying "mum mum" non stop ds1 started saying it:laughing: he also said dad dad when dp came home form work:D his pead said ds1 has a expresive speech delay.i'm hoping to get some flash cards made up for him so he can use them to communicate with people who dont knwo sign and so he can recognise words as he learns how to say them IYKWIM.
ds2 has a bad case of reflux and we are on the path of getting him something for it.his dermoid cyst is being monitored for any change but it appears to be staying the same.

mummyof5

17-04-2007, 21:26

So how did he go with the speechie, Jess? Good to hear he is making some attempts at words, my Bronte is just starting to do the same, so never know in a few months we might be on here, whinging that they never shut up!!:laughing: :fingerscrossed:

999reasons

18-04-2007, 12:14

I have a two and a half year old with Down Syndrome and an 11 month old son too, keeping me busy. Also in Sydney - just getting in touch with other mums. Sounds like you have a good network going. You can see our whole journey and blog in my profile.
Katrina

mummyof5

18-04-2007, 18:53

Hi Katrina:wave: ,
Welcome, you've come to the right place to chat!!:D
Where are you from originally??

MamaRabbit

20-04-2007, 09:43

Hi Katrina, sounds like you have taken all Kayla's hurdles in your stride, looking at your site it's clear she has plenty of laughs and adventure surrounding her which is great.

We see Lifestart also (just transferred from Hornsby to Cumberland Prospect) and we do Conductive Ed at Allambie Heights.

P.S) love the clip of Kayla shaking her booty!

gremily

20-04-2007, 21:10

The video is beautiful:)

It's so great to see so many more people venturing in here.

Lunar

21-04-2007, 07:47

Hi Katrina!!!:wave:

I am mum to Emily, 5 who has DS, and Kailah who is 13 months.

Nice to meet you! Where about in Sydney are you from? We are from Sydney too!

Looking forward to getting to know you and your family!:hugs:

Lunar

21-04-2007, 07:53

Katrina, just went and read your story on 999reasons.... I could've written that myself!

What a beautiful story!
:hugs:

iluvmeboyz

01-05-2007, 00:32

mine has a speech problem at the moment that we take him to get therapy to help him talk much better

jessgray

05-05-2007, 18:12

:wave:
long time no post lol
well long story short cody (DS1) is a handful now. he has become very agrressive towards anythign and everything we do knwo his speech delay is makign the aggression worse but we can tell there is more to IYKWIM. he isnt sleeping much if at all:( his tantrums either result in ,me or dp being hit or headbutted by him or he goes all floppy (ghandi techique):laughing: we are sturggling with him,he bounces off the walls like hehas drank 200 cokes and eaten sugar al day lol. we put him on a preservative and additive free diet and there was a bit ofimprovemnt but he is still hypo.DP isnt coping with cody's beahviour at all:(
do you guys think its worth talkingto the pead on monay?

mummyof5

05-05-2007, 18:18

I definately think you need to speak to the peads Jess, make then aware of what is going on with him and see wether they can suggest anything else to try. Maybe keep a diary of his behaviour for a few days/weeks so you have examples to give them.
:fingerscrossed: for things to calm down soon.

Nowhere

05-05-2007, 21:31

i have nevr posted in here before but thought i would today, my dd kenzee is one year old and she has servere GI disorders and is total tube fed and also has hypertonia, and sensory intergration disorder, so also has other isues with her ankels and feet but we are hopeing that it will self corect as she gets stronger, due to her GI disorders she is drastincly FTT she is only 6.5 kilos poor litle thing is so tiny her 00 clothes are way to big on her waist LOL

She has also had other health problems she has had 2 operations for laryngomalia, she had pyloric stenosis repair, and fundoplication, and more than likely looking at having a pyloryplasty and a hernia repair, she aslo has alto of chronic pain due to her GI didorders which i hate the most there is nothing worse then seing your bub in so much pain its just awful

She is curently being seen by a physio, OT,ST

I know that her issues are not as servere as alot of other bubs out there bt she certanly has more then her fair share of batles

rollercoastermum

05-05-2007, 21:51

Hmm where to start!!!

I'll start with Samuel even though he is now an ANGEL in Heaven..
Samuel had ADHD, OCD, PDD, ODD, Tourette's and more... he passed away in his sleep aged 11.5yrs..cause: Sudden Arrhythmic Death Syndrome www.sads.org.au (http://www.sads.org.au) or www.arrhythmichearts.org (http://www.arrhythmichearts.org) (you'll find Samuel's story on that one).
Brandon is now 11 and has : Global developmental delay, mild autism and low muscle tone and a history of asthma. He also has a larger X gene and has the characteristics of Fragile X Syndrome.
Tori is 11 and has a history of asthma and childhood depression.
Dermott is 8and has psorisasis and arthritis and is also undergoing counselling for life issues...and a history of low muscle tone and asthma.
Thomas is 8 and has a history of seizures and asthma. He also has a heart murmur.
Zoe is 7 and has global developmental delay, hearing loss, eye issues, food allergies (severe & life threatening), hpermobile hips/knees/ankles, cafe au lait spots, asthma and speech issues. She also has a history of seizures.
Blair is 3 and has speech delay, tongue tie, asthma, eczema and has a heart murmur and have been told he is in the ADHD Spectrum.

Yes I am busy.
Yes it can be hard to cope.
BUT
We are given what we get for a reason.
Someone out there felt that we can deal with the very special children we have.
And yes I am the kind of parent who fights to get the help that my very special children need. And wont give up until it is done.
I love my children they are my world..

PunkyDiva

05-05-2007, 21:57

WOW rollercoastermum, you had my attention and respect at mother of 7 + 1 but after reading your post you are one helluva strong, determined, insiring woman and mother too.

My DS2 has epilepsy(uncontrolled at mo) but our struggles nothing compared to what others deal with on a daily basis.

:hugs: for all you amazing woman.

rollercoastermum

05-05-2007, 21:59

Nowhere

05-05-2007, 22:37

wow your one bussy lady rolercoaster mum, im so sory to here of the loss of you child, im sure the most dreadful loss that is unimaginable to most of us:hugs:

thinking of your :angel: as i type

this is so bad after reading your post i realised i left out half of kenzees isues which include heart murma, inlarged heart, reactive airways, tongue tie (hasbeen repaired) intolerant to everything exept neocate

jessgray

06-05-2007, 06:48

rollercoastermum- wow you are an inspiration:hugs:

mummyof5- thanks we are giving the pead a call tomorow morning:thumbsup: cody has been waking up at 5am every day:eek: and he doesnt have day naps either so i dotn get any nana naps lol poor tyson he is dead tired by 5pm coz cody often wakes him up by accident so tyson is now in the habit of cat napping during the day and by 6pm he is dead to the world.he understadns us we know that he just chooses to ignorew us when we say dont stick that in the plug:banghead: lol is it safe to cutdown on sugar? dp suggested it this morning cody doesnt eat much sweets but i do make muffins and cakes etc for him.just thinking if sugar would be a contributer i dont think it is coz i put less sugar in the cakes etc then what recipe says or put honey in it. dp's best mate avoids comign here much coz cody will beat him up as soon as he comes through the door. best mate gets whacked in the privates

Grace3

06-05-2007, 07:04

:wave: my Ds1 is almost 22 months he has hearing loss in both ears, we find out next week if its fixable by grommets or not. he doesnt talk either thats how much his hearing has affected his speech:(
he also has asthma and eczema and allergies :laughing: he's a handful :D

ME: Both of my children have hypotonia, a muscle discorder. They are only slightly delayed in some areas now. A lot of hard work and physio but all worth it.

JESSGRAY: Have your tried to teach him how to sign? I taught both of my chidlren from 6 months and it was FANTASTIC!!!

ROLLERCOASTERMUM: Thats amazing. I truley hope you have the best Mothers day ever.

To everyone else, BIG HUGS.
Grace

jessgray

06-05-2007, 09:23

yes he signs and has flash cards he can sign a few things but he relys on the cards more

gremily

07-05-2007, 08:44

I haven't been in here for awhile and I'm quite surprised at all the people popping their heads in:)

RCM - I've seen your posts regarding some of your children, and I must say when I read them I am just amazed. I can understand a bit of meaning behind your username anyway!

Jessgray - you need to demand some action for Cody. Like Mummyof5 recommended, start a diary of his days - what he eats, his behaviour, etc. Do you have a video camera? Set up the camera for a bit and record how he behaves, then show it to your paed.
Oh, and remember that despite honey being natural, it's still a sweetener! Mmm, honey;)

jessgray

08-05-2007, 06:07

:thumbsup: yeh i could omit the honey but i am the one with a sweet tooth:laughing: i see the MCHN thursday for his 2 yr old checkup which should be intresting coz he dislikes going there he also dislikes unfmailar people and there is a new nurse there taking over while our normal one is on holidays, cody is trying to find hsi way i think but his speech delay is frustrating him alot. i am hoping the nurse will be able to give me some ideas till our pead gets back from brisbane. our gp was no help at all.she said it was just the terrible twos:confused:

mummyof5

08-05-2007, 13:11

Hi all, great to see lots of faces in here:thumbsup:

Rollercoastermum, your Brandon sounds like my Jock, though his fragile x test came back normal, even though I am a carrier...we are being tested for an unbalanced translocation now, and if that shows nothing, I will ask them to check for mosaic fragile x, as Jock has most of the tendancies, just not the most obvious physical features. I suddenly don't feel quite so tired anymore, after reading your post...

Jess, Bronte is totally frustrated at the mo too, wish she coud tell me what is bothering her...getting sick of the tantrums! Good luck with the MCHN, maybe fresh eyes might see something other's haven't. As for the sugar idea, well probably best to keep a food diary, as it may be colours or preservatives that set him off. Show that to all health professionals, see what light they can shed on it, if any at all.

Take care all..

jessgray

08-05-2007, 15:43

yeh we have a food diary :):thumbsup: thanks guys:D

MamaRabbit

08-05-2007, 17:48

gremily

08-05-2007, 20:20

I just wanted to welcome all the newcomers, this forum is such a great tool, I have learned more about daily life with special needs on here than anywhere else. It also allows the opportunity to vent, sob, laugh when needed - so thank you for your ears ladies, it is appreciated :thumbsup:

Well said MamRabbit:)

MR - I didn't realise who you were in another S. Needs thread and only just clicked now! Cute avatar btw:yes:

MamaRabbit

08-05-2007, 20:51

Yeh - name changes going on all over the place. Since day one Charlie has always been known as Rabbit and Sophie as Poppet. But she has been trying to say Rabbit lately so now everyone is a rabbit - Papa Rabbit, Mama Rabbit, Little Rabbit and Baby Rabbit!

It's the small things that amuse us in our household ;)

I should probably add "Formerly Known As RabbitAndPoppet" and "ElleandCharlie" at the bottom....or I could just be mysterious and confuse you all.

I like your new avatar too...speaking of early toilet training. Little Charlie Rabbit did a number 1 in the potty this week for the 1st time. It was a total fluke but we had a big song and dance and put a sticker on the potty chart!

Nowhere

08-05-2007, 21:56

hi guys
thanks for the welcome mama rabit im one of the newbies to this thread

kenzee got another pieco of equiptment today she now has a walking frame as well its just a soft one to help her stregthen her legs , the more work she does on then the less chance of needing AFOs so we are trying but its just not hapening KWIM

jessgray

09-05-2007, 06:23

:thumbsup: i'm not a newbie:laughing: i'm an oldie who lurks lol ds2 is now crawling and on the move so i am short on time lol:laughing: ds1 is in that lovely terrible two's stage:yelclap: lol

jessgray

10-05-2007, 17:50

we have a new mchn and she is refering cody to EI :thumbsup: she was shocked no 1 had doen it earlier:no:
so she is going to write referal and next friday i have to pop in and sign the forms and then we wait to hear back on the EI approval i guess she has only met cody twice and today he was having a pretty good day but she was worried about his beahaviour and his speech delay.so i am glad someon ehas listend to me at last lol

Nowhere

10-05-2007, 23:01

oh thats good that you have the referal hopefully he makes lots of progress

Lunar

11-05-2007, 11:53

Hi girls, just thought I'd stick my head in and say Hi...:wave:

I'm still alive (much to some people's dissapointment:rolleyes: )

We have moved and are settling in well.

I will organise another s/n meet for my place (we are now located in St.Andrews.. for all the sydney mums or anyone else who wants to come.) but it will be in about a month I think, give me time to get organised and everything sorted here.

Must go, things to clean, stuff to unpack and sort.

much love:hugs:

mummyof5

11-05-2007, 18:48

Hi Lunar :wave: , glad to hear you are all moved in now!! Would love to come and check out your new place sometime :yes: .

Jess, how good is that!!! :fingerscrossed: for a quick reply from the EI place, so you can start him getting some help!! So happy for you!!

Hope all is well around the traps, had an interesting week here, culminating in DD2 getting 4 stitches in her head on Wed night...am looking forward to a lazy mother's day to unwind!

Take care all.

gremily

11-05-2007, 19:06

...or I could just be mysterious and confuse you all.

I like your new avatar too...speaking of early toilet training. Little Charlie Rabbit did a number 1 in the potty this week for the 1st time. It was a total fluke but we had a big song and dance and put a sticker on the potty chart!

A little mystery is always good;)
You guys must have been jumping up and down for Charlie! How do you know when he wants to go? Does he kind of signal you in some way?

we have a new mchn and she is refering cody to EI she was shocked no 1 had doen it earlier
so she is going to write referal and next friday i have to pop in and sign the forms and then we wait to hear back on the EI approval i guess she has only met cody twice and today he was having a pretty good day but she was worried about his beahaviour and his speech delay.so i am glad someon ehas listend to me at last lol

Great news Jessgray. It's about time someone took it seriously. Sounds like she'll be a great MCHN for you:)

I'm still alive (much to some people's dissapointment

We have moved and are settling in well.

I will organise another s/n meet for my place (we are now located in St.Andrews.. for all the sydney mums or anyone else who wants to come.) but it will be in about a month I think, give me time to get organised and everything sorted here.

Glad you're still here Lunar, and very much alive! Bugger to those who think otherwise:rolleyes:

And you know me - I'll be there for the meet with bells on...... so long as I don't have to cross the harbour bridge!!:laughing:
Take your time, get settled in, then we can look at organising something.

had an interesting week here, culminating in DD2 getting 4 stitches in her head on Wed night...am looking forward to a lazy mother's day to unwind!

Hmm, stitches hey?! We have had some close calls but they've never eventuated in stitches, thank goodness! My brother had a gazillion stitches when we were growing up, and even in his 20's he's had a few mishaps!

Lunar

12-05-2007, 07:52

Em, no, you won't have to cross the bridge..pmsl!!! (it scares me toooooo!:laughing: )

You just need to find the M5:thumbsup:

Well, we have a tissue addict here. Emily won't stop blowing her nose! She learnt how to do it properly a few weeks ago and since then she just stands there, blows, snot goes down her face, and THEN she asks for a tissue.... she stands there and says "Oh no! Tissue! Please!"
It's cute but it's getting annoying!!!:laughing:

gremily

12-05-2007, 18:50

Well, we have a tissue addict here. Emily won't stop blowing her nose! She learnt how to do it properly a few weeks ago and since then she just stands there, blows, snot goes down her face, and THEN she asks for a tissue.... she stands there and says "Oh no! Tissue! Please!"
It's cute but it's getting annoying!!!:laughing:

lol :laughing: One of those things that starts of as a wonderful milestone but turns into an "argh!!!":laughing:

Can I?

14-05-2007, 10:20

Lunar

14-05-2007, 14:11

That is so cute! Well from here anyway ;)

Yeah, but we go through taht many tissues it's not funny!
And when she is done with them she gives them to DD2 (14 months) and she tears them to shreds and tries to eat them....:barf:

Got a high today... Emily said "PHOTO"... first time she has made the 'ffff' sound! I was in shock and tried to get her to say it again, but she kept saying "yeah!" everytime I said 'say photo'... was very very cute! She got excited about it too!

:yelclap: clever girl Em!!!

jessgray

15-05-2007, 06:15

when the mchn suggested EI for cody i was shocked because our other one didnt want to do the referal:confused: i hope my old one stays on holidays dp thinks this one is the best mchn we have had:thumbsup: she is worried about codys weight we have been worried about for ages so we are happy someone is listening:laughing:
the nurse rang up on friday to tell me its a 6 month wait ussually but she is going to see if cody can be pushed through:fingerscrossed:

pmorgan

27-05-2007, 00:40

Ok, just got me thinking, how many of us bubhubbers have children with special needs?

*puts hand up!*

My DD1, Emily, has Down syndrome.

So...:detective: who are you and what is your child's disability/ special needs?

My daughter has Prader Willi and hip dysplasia and we have a surgeon wanting to operate on both hips now even though it is not "vital" as he puts it.
My little girl is almost 6 and we are having great difficulty in having her operated on now instead of in the future, she is going to be in hospital for three weeks and then bedridden at home for another six at least, at this age we take their pain away if we can how can we subject her to great pain now when she does not fully understand what is going on as opposed to waiting for a few years.:thumbsdown:

jessgray

30-05-2007, 05:40

update on cody: ENT confirmed codys speech delay isnt from hearing ENT said there is nothing wrong with codys ears or hearing so now we have to investigate other causes

FourAngelKisses

30-05-2007, 05:43

oh wow, good luck, I hope he will be okay. :hugs:

Can I?

30-05-2007, 11:09

Any suggestions as to what Jess? Hoping it is something that responds well to therapy :fingerscrossed:

jessgray

31-05-2007, 14:52

ENT didnt give us any hints but i think it may be something like ASD he has a few of the traits of it.

shanmickbre

28-07-2007, 21:11

Hi, I'm only new here, just been reading a few posts. I have a three year old daughter who has Microcephaly, Lissencephaly, Epilepsy. I also have a five year old daughter who is "normal". Just thought I'd say hi

mysonroger

28-07-2007, 21:43

Got a high today... Emily said "PHOTO"... first time she has made the 'ffff' sound! I was in shock and tried to get her to say it again, but she kept saying "yeah!" everytime I said 'say photo'... was very very cute! She got excited about it too!

!!!

awwww. that's so cute. YEAH!!

immy

29-07-2007, 08:49

Hi my little one was a 26 week bub 550grams. As a result she is 17mths 6.4kgs. Developmental delay e.g only just sitting up amongst other things. Fed by NGT, possible hearing problems in one ear still having tests. Possible sight problems her eyes have to be checked again shortly, one is more long sited than the other. Asthma, Hayfever, Chronic Lung Disease. Severe reflux. She is also has an appointment with a neurologist, as mild Cerebral Palsy could be a possibility. However she is just perfect if you ask me!!!

justme77

06-08-2007, 19:07

my eldest is almost 10 and is autistic.

My biggest whinge is the """professionals"""" you have to deal with. my experience is that 90% of them have no idea what they are doing and treat every child the same. when of course, they are not.
and yep, its coming up to IEP time so im getting cranky about them. Lol.

Nowhere

06-08-2007, 20:11

so true, about dealing with the profesionals, im so sick of hearing i have never come across children like mikenzee, it drives me mad as soon as they say that i think great another waste of time

Hey any of you ladies on here got childrent that are J tube fed (transpyloirs) mikis G tube feeds are not really working for her, she is not able to tolerate any more than 35 mls an hour and even at that she is having a lot of trouble so it looks like we are going to be moveing to a J tube so an one that can answer my questions let me know :)

BabyLs

07-08-2007, 18:37

My DS has Autistic traits but is yet to be diagnosed as he is only 2 and Paed wants to wait til he is at least 3.

We have just got into a daycare one day a week and have got the approval from the Inclusion Support Agency to get funding for a special support person for him.

Am very nervous for him but I know it is the best thing to do. He really has gotten quite stressed and had a couple of meltdowns on our visits there to get a feel for the place.

:fingerscrossed: he loves it eventually. He is my beautiful baby boy and I just want him to be happy.

ReecesMum

07-08-2007, 21:04

My son has an absent septum pellucidum which has caused Septo optic dysplasia(SOD)(Under developed optic nerve.On top of this he suffers from severe brain damage resulting in severe developmental delays.At 17 month he is not walking,crawling,talking or doing anything he should be.He is still my sexy little man and i still love him dearly no matter what.

ReecesMum.

amandanamelia

08-08-2007, 16:55

my daughter amelia has been on meds since day 2 of her life, from today we are trying for the 3rd time to wean her off them.

She suffered seizures within 24hrs of birth from a blood spot on her brain, the doctors presume from birth, this is something she will grow out of (the seizures) at a guess 3 or 4.

She is currently seizure free for 12mths hence her pead is happy to try again reducing her meds will take 3mths, if she has a seizure we are straight back to normal doses, and bloods taken. If not we will no longer need to see the pead, or takes meds :fingerscrossed: :fingerscrossed: :fingerscrossed:

Sorry not sure if we fit in here.

I also have an uncle with Downs, he just had his 50th last month his a asset to our family:thumbsup:

sandy_1902

10-08-2007, 18:54

i dont have a child with special needs but i have a 14 year old sister with downs. (sorry cant spell it all)

who i wouldnt change for the world dont think i would be able to handle a "normal" younger sister with the whole dress sense these days

KarniF00l

10-08-2007, 19:48

DD1 (4) has Autistic traits and currently on the way to a diagnosis. Possibly Aspergas. The pead knows there's something wrong with her but hasn't yet put a set diagnosis in writing. Since we just recently moved we had to hunt down another pead which we are soon to meet up with. I'm hoping it's a decent one.

We just recently enrolled Calista into the ABC learning Centre 3 days a week where she is entitled to a personal aide as well as early intervention. She starts next week.

Anyway, Just want to pop in and say hi :wave:

trina73

10-08-2007, 20:24

Hi there :wave:
I have a son with autism, jordan is turning 4 in october and still non verbal.

MummiBear

14-08-2007, 20:30

My son has Hypotonic Cerebral Palsy and has diaplegia and has sensory sensitivities. He is two and four mths. He cannot stand or walk yet but we are working on it!
He has just been accepted into Novita which is very exciting :)

mum11

02-09-2007, 17:50

my ds has autism and dd cerbral palsy

Verdi

08-09-2007, 16:00

Hi guys my precious little boy who is 8 years old has just been diagnosed with Mild ADD and ASM (mild autim) We are under current investigation and will be reviewed in the month of October by a sopcialised Pyschiatrist and then we will be making our decision on what to do for him. it looks like medication for him and we have the best peadiatrican in Melbourne.

This makes me love him even more, he is so beautiful and extremly artisitcs and a very generous caring little boy.:yes:

supa_star323

05-10-2007, 19:53

I noticed no-one has written in here for a while, but I thought I'd introduce myself anyway. My DS is 15 months old. He has been diagnosed with development delay because he isn't yet crawling or walking. He had very delayed eating, didn't start solids till eleven months, and is still a big fight every time I try to feed him. He has also been diagnosed with seizures, and gone on medication. Oh, and an MRI at 12 months showed that his brain was more like an 8 month old.

Anyways, hi to anyone who still looks in here.

kiwibird27

06-10-2007, 08:35

supa_star323

07-10-2007, 08:49

Hi supa star....welcome!!!! My DD also has developmental delay, is 15 months and not holding up her own head yet, she is also tube fed has she had severe reflux. She has a genetic condition known as congenital disorder of glycosylation type 1a.

Are u guys trying to figure out a diagnosis?? What have they tested for???

They have tested for evrrything!!! Blood tests, chromosone tests, MRI and EEG... We are seeing a paeiatric neurospecialist tomorrow so hopefully we'll have a better answer then...
Do you find it hard with your daughter? I sometimes find myself getting frustrated with jacob, and then I just get angry at myself for that... It's not a good cycle...

kiwibird27

07-10-2007, 09:48

I know it's really hard especially when u don't have a diagnosis yet..... Just have to stay as positive as possible and take one day at a time, will stay intouch, I am in Sydney, where r u?????

supa_star323

07-10-2007, 11:30

We are in Byron Bay. There's no support groups or anything around here, and all of my friend's children don't have anything foing on. I might look a bit further, like the gold coast, and see what support groups are up there. It's only about an hour away so that's not too bad...
How's your little girl going?

amyt878

13-10-2007, 09:42

Madison is 2, has Panhypopituitarism, Septo Optic Dysplasia and Dev Delay of about 10 month level.

sunshyne

14-10-2007, 23:03

Hi just thought i would intro myself. My name is Stacey and i have 2 bewdiful girls, Tayla who is 4 and is a handfull and Abbie who is 8 months old and has Down Syndrome, she is a delight, well they both are but Abbie is just such a good girl!!!

Hope everyone is well.

ReecesMum

23-10-2007, 18:18

Madison is 2, has Panhypopituitarism, Septo Optic Dysplasia and Dev Delay of about 10 month level.

My son is 19 months and has SOD Septo optic dysplasia as well as severe brain damage which causes severe development delays he is at approx 1-6 months development depending on the function.He also has Hypoxic ischaemic encephalopathy and his pituatry gland is producing slow amounts of growth hormones so he is also small and underweight for his age.Doctors have put him under the classification of cerebral palsy as he cannot walk,talk,crawl,grab or use his muscle the way they are suppose to.

ReecesMum. :angel:

kiwibird27

23-10-2007, 19:26

HELLO new people, haven't posted here in awhile.......just saying hi!!!!!!!

Megan is great, she's 16 months now,she had her fundo and doesn't vomit anymore, she is still on a milk pump 22 hours a day but continues to get a little stronger each week, I reckon she will sit before she is 2 !!!!! Will post a link to her story to those who don't know it.

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

She's so happy and totally recognises Mum and Dad now!!!!

Thats all, stay in touch!!!!

TeenyT

25-10-2007, 10:39

Hi everyone. Our yet to be born bub #2 has just been diagnosed with (have to take a deep breath to get through all this!)... Atrio-ventricular septal defect with an underdeveloped right ventricle. He also has a double outlet right ventricle with transposition of oxygenated and de-oxygenated blood. What does this mean? A lot of bloody major operations for such a tiny baby. I feel sick. How do you get through surgery on your precious little ones?