Going Backwards??

[Gloominous]

Does anyone out there with developmentaly delayed etc children sometimes feel they are going backwards? It seems sometimes that we aren't getting any better but maybe worse! I dont know if it's just me being a bit harder on her (trying to help I mean) or if it is worse.

Probably doesnt make any sense sorry!

[mummyof5]

No, I get what you mean. I always feel like it is 2 steps forward, then one back. Jock will do something so age appropriate, and I'll be so happy, then next thing he is destroying something, or playing in his dirty nappy or some such and I think he'll never grow up!!!
Some days it seems so much harder too, doesn't it. If you are really concerned maybe discuss your concerns with your peads, but mostly just keep your chin up and remember you are doing the best job you can, just as we all are.
:hugs: for you and your DD.

[becca022]

I know excactly how you feel. My DS will do something wonderful, then he flatly refuses. The most frustrating thing with DS right now is his eating. For some reason he refuses to put things in his mouth so at 2 years old we still have to feed him. He starts making progress, then stops & goes back again. It does get frustrating, but I think it's frustrating for the kids too. My Ds has a physical disability & is sooooooo far behind developmentally it's sometimes depressing. :gloomy:

[Gloominous]

Thanks ladies at least I know I'm not the only one to feel this way.

:hugs: to you and thanks for sharing.

[jessgray]

my ds1 is 21 months old and he is delayed in the speech area due to hearing loss in both ears and i feel the same way sometimes. some days he acts like a non hearing imapred child and talks- he can only say a few words. and other days he doesnt respond:banghead:

[vikki a]

I know how you all feel, my DS is 10yrs and has AS. I've been there done that, and still doing it!!:banghead: Just when i think i've got him worked out he changes the rules!! Hang in there, it does get better, well most of the time............

[Foxymoron]

:hugs: It's all part of the ride, you get some wonderful progress, then they seem to regress. I'm learning to roll with it, but it can be pretty disheartening. I think there is an ongoing process of grief for the hopes you have for your child. My ds is starting school, with an aide next week and it scares me, and thrills me all at the same time.

[MamaRabbit]

Hi everyone, I'm in the same boat. My Charlie is significantly delayed in all areas. Most people don't realise just how involved it can be - endless therapy, researching and generally needing to assist him with most things he does. Thankfully he is good natured and an angel of a child so I don't even realise it most days. But around each corner there is always the looming feeling that we are not improving and things may never get better. After a day or two I generally brush myself off and get to it again with a renewed enthusiasm. Making sure I don't measure him against anyone else's achievements is important too.

My husband says Charlie is like a great big clock, he's still ticking but just keeping his own time. A nice thought really.

I think it's all part of the grieving process. Grieving because he may not be experiencing what other children are, but also grieving as a parent and dealing with ignorant people who make silly comments about his development.

Chin up, smile on, these little ones are not lacking something.....they have a little something extra and they are only given to the extra special mums :yelclap: Keep up the good work, we are all doing a great job.

[jessgray]

Chin up, smile on, these little ones are not lacking something.....they have a little something extra and they are only given to the extra special mums Keep up the good work, we are all doing a great job.

:) that almost made me cry lol. i dont know why everyone says i am doing such a good job with ds1.i'm really the only person who understands him 100% DP knows most things ds1 communicates but still needs me to translate. i worry what will ahppen when i'm not there.


I know how you all feel, my DS is 10yrs and has AS. I've been there done that, and still doing it!!:banghead: Just when i think i've got him worked out he changes the rules!! Hang in there, it does get better, well most of the time............

my sister has aspergers (is that what you mean by AS?) she is 16.i think she has a very mild case of it because it doesnt seem to affect her much IYKWIM. i struggle to figure out my ds1, he's so hypo like your average toddler but he pretty much is silent.music is one of his joys. i love seeing hsi face light up when he watches music on youtube LOL


:hugs: It's all part of the ride, you get some wonderful progress, then they seem to regress. I'm learning to roll with it, but it can be pretty disheartening. I think there is an ongoing process of grief for the hopes you have for your child. My ds is starting school, with an aide next week and it scares me, and thrills me all at the same time.

:hugs: a part of me doesnt even want to think about kindergarten lol let alone school... LOL

i feel very isolated i dont know any families with a child around ds1's age that has hearing loss. we havent been offered anything really. i think its coz audiology want to be 100% sure its permanent (sp?) beofre reffering ds1 anywhere. they have high hopes that his ear with mild hearing loss is fixable with a grommet but they arent sure about his other ear it has moderate hearing loss and at first they thought it was a wax blockage and they said try some ear drops see if that works it didnt. at the last test they said it could be a sign that ear is not going to be fixed by a grommet. they just dotn knwo coz he hasnt ever passed a hearing test in his whole life

[theycallmemum]

My 10yr old DS has AS as well. He normally takes a big step back before a leap forward, it's always quite scary because you just never know if he will take the leap forward after the step back IYKWIM?

Have you looked at doing the DORE programme with your son? My son is several months into it and it really is helping with things like short term memory, balance and focus.

[jessgray]

does anyone know if there is a program for my ds1's age for hearing impaired kids?

[Gloominous]

My husband says Charlie is like a great big clock, he's still ticking but just keeping his own time. A nice thought really.

That's great! I love it!

Obvoiusly this is a common thing that we're all experiencing, (:thumbsup: for not being wierd, :thumbsdown: for us to be dealing with it in the 1st place)

DD is starting back at the early intervention program in two weeks so hopefully we will have more steps forward than back!

:hugs: :hugs: to everyone.

[Gloominous]

opps sorry, jessgray maybe try the institute for deaf and blind children - they should be able to point you in the right direction at least.

[Lunar]

opps sorry, jessgray maybe try the institute for deaf and blind children - they should be able to point you in the right direction at least.

yep! Was going to say the same thing!

I love the clock thing too. It is very true, and some parents take a while to understand that, but when you do finally get it.... wow!:yes:

My DD1 has d/s and is delayed in ALL areas, especially speach. We use alot of sign language with her and I can not praise it enough! It has been a God send to our family and mostly to our sanity...lol
I would reccomend it to anyone who's child is speach delayed. Jess you should really look into it if you haven'talre. It really eases the child's frustrations.

We have been trying to TT Emily for almost 2 years now and it is a constant battle with her. One day she will be really god in telling me she is wet or asking to go to the toilet or potty and other days she won't even let me change her nappy and screams when I try to take her to the toilet. It is really frustrating but I know we WILL get there in the end. Sometimes I am so tired of the fight I just give up and don't bother some days.. which I know isn't good cos she needs routine with this, but it really gets too much come days.

[mummyof5]

:hugs: a part of me doesnt even want to think about kindergarten lol let alone school... LOL

I know exactly how you feel, and Jock starts this week!!:eek:
they have high hopes that his ear with mild hearing loss is fixable with a grommet but they arent sure about his other ear it has moderate hearing loss and at first they thought it was a wax blockage and they said try some ear drops see if that works it didnt. at the last test they said it could be a sign that ear is not going to be fixed by a grommet. they just dotn knwo coz he hasnt ever passed a hearing test in his whole life[/QUOTE]

Jock hadn't either, and had no speech at all. He didn't gesture or anything, but after surgery he started within the month and withing 3 was using short sentences. He has other issues and his speech is not totally clear, but he can and does speak, so :fingerscrossed: for your boy with his grommets too.

[mummyof5]

We have been trying to TT Emily for almost 2 years now and it is a constant battle with her. One day she will be really god in telling me she is wet or asking to go to the toilet or potty and other days she won't even let me change her nappy and screams when I try to take her to the toilet. It is really frustrating but I know we WILL get there in the end. Sometimes I am so tired of the fight I just give up and don't bother some days.. which I know isn't good cos she needs routine with this, but it really gets too much come days.

Good on you Lunar. I haven't really started with Jock as even though he is 4, he has no concept or feeling at all that he is going or even has been. he just plays in his poo when he is bored!:barf:
I really am not sure where to start with him. Any advice???

[Lunar]

Good on you Lunar. I haven't really started with Jock as even though he is 4, he has no concept or feeling at all that he is going or even has been. he just plays in his poo when he is bored!:barf:
I really am not sure where to start with him. Any advice???


OMG... the poo playing....:banghead: :barf:
Em likes to stick her fingers in it too, drives me up the friggen wall!!!!!!!
I think you should start when he shows interest in the toilet or if you notice him going to a particular spot just to do a wee or a poop. I find Emily will scream for me to let her out side so she can do a poop. I have tried taking the potty outside but she still refuses.

I really have no idea about this potty training business, Em is my first so I haven't been down that road before. What about your other kids? Maybe you could just follow suit what you did with them???

[jessgray]

opps sorry, jessgray maybe try the institute for deaf and blind children - they should be able to point you in the right direction at least.

:thumbsup: thanks.




My DD1 has d/s and is delayed in ALL areas, especially speach. We use alot of sign language with her and I can not praise it enough! It has been a God send to our family and mostly to our sanity...lol
I would reccomend it to anyone who's child is speach delayed. Jess you should really look into it if you haven'talre. It really eases the child's frustrations.



we do some baby sign at the moment he doesnt seem to be able to master the signs himself but he understands them after seeing them a few times.

should we ask for a referal to a speech therapist too or wait till after grommets:confused:

[mummyof5]

You don't need a referral for speech through your local hospital, at least not up here you don't. Ring your local hospy switch, get put through to the speech pathology dept, and ask them if you do though. You usually make a request for an assessment then after they do that they will send you a letter with the time and place for next term or whenever he gets in. I would be asking now, rather than waiting for the ENT's input, as if there is permanent loss, the sooner you work with him, the better, and there can be quite a wait.
The other thing you can do if you think it will benefit is early intervention. I don't know wether you have any other issues than speech, but my daughter who has just turned 2 and is non verbal goes, and so did Jock till this year and they will also work on his speech with him. If that makes any sense???

[mummyof5]

I really have no idea about this potty training business, Em is my first so I haven't been down that road before. What about your other kids? Maybe you could just follow suit what you did with them???

Jock is nothing like the other ones though, as they gave signs that they were going and stuff, but he does nothing like that. The only reason you know he has gone without actually having a look, is the smell, or his nappy hanging round his knees:D . He's really scrawny, so that is not uncommon!
I think we will have to try putting him on a schedule, where you sit them on the loo every half hour or so until they get the hang of it, then slowly increase the gap. Totally sucks when I have 4 others and hubby lives away most of the time....:banghead: Just not a job I am looking forward to!

[MamaRabbit]

Hi JessGray, have you heard of the Hanen course - it takes 2 to talk?

I bought the Australian Baby Hands book to try and get started on speech but have been so focused on other areas of Charlie's development that I haven't given it a good go yet. At 2, he is quite delayed with Speech too.

We are doing the Hanen course in March through - learning to communicate. Have a look at this link: http://www.hanen.org/ it is a Canadian organisation but loads of early intervention and speech therapists run the course. We are doing ours through Lifestart in Sydney.

Hope this helps....it's an endless research game isn't it :)

Lunar & AltMum - so true. Once you get your head around ticking to their own time, things seem a little easier to manage. It's great that we have support on here, but again so true, it sucks that we have to in the first place. Makes us all the more special I reckon!

Re: Toilet training - I have no suggestions! All I can say is I'm not looking forward to it! Charlie is no where near ready yet but I'll be storing your tips in my memory bank until I need them.

[jessgray]

i have the baby hands book:thumbsup: that site you linked sounds great would it be in victoria?:detective:

[jessgray]

You don't need a referral for speech through your local hospital, at least not up here you don't. Ring your local hospy switch, get put through to the speech pathology dept, and ask them if you do though. You usually make a request for an assessment then after they do that they will send you a letter with the time and place for next term or whenever he gets in. I would be asking now, rather than waiting for the ENT's input, as if there is permanent loss, the sooner you work with him, the better, and there can be quite a wait.
The other thing you can do if you think it will benefit is early intervention. I don't know wether you have any other issues than speech, but my daughter who has just turned 2 and is non verbal goes, and so did Jock till this year and they will also work on his speech with him. If that makes any sense???

that makes alot of sense. early intervention where would i contact to organise that?he seems to be only delayed in speech.he has eczema and asthma and reacts to foods.we getting him tested to see how sever his allergies are.i suspect his lactose intolerance is actually milk protien allergy.

i worry about childcare,he is pretty high maitanence so we took him out last october before ds2 was born, his immune system just couldnt handle all the bugs.he spent more time sick then at day care playing:(

[mummyof5]

that makes alot of sense. early intervention where would i contact to organise that?he seems to be only delayed in speech.he has eczema and asthma and reacts to foods.we getting him tested to see how sever his allergies are.i suspect his lactose intolerance is actually milk protien allergy.

i worry about childcare,he is pretty high maitanence so we took him out last october before ds2 was born, his immune system just couldnt handle all the bugs.he spent more time sick then at day care playing:(

Um, the first time I used EI, my early childhood nurse recommended one, so you could ask them. The ones they recommend are usually gov run, so therefore cheaper. There may be a privately run one in your area, but they can be a bit rich...some do an open playgroup though, so worth asking around. i actuall found the first one we used in NSW in the local paper, after a story was written about some fundraising efforts!
Jock also had a milk protein problem, which he eventually grew out of. We put him on goats milk and it did wonders...only changed him back to cows milk when he was about 2 or so.
Maybe you could try some family day care or something, so he gets to play and stuff, but is exposed to smaller numbers, then his immune system might get a little more time to mature?? Just a thought.:)

[jessgray]

we've looked into family day care but head office want to make sure the person who looks after him wont get stressed etc so they are hunting a qualified carer or aa carer whohas a child with similar needs.so i guess its good they wont let just anyone care for him.
he isnt very good at playing with others as his hearing has gotten worse he started getting frustrated when kids didnt understand.i think i'll ask my mchn if she knows of any playgroups that will suit him.:D

[MamaRabbit]

Hi Jess,

I found the following links for hearing impaired early intervention:

http://www.taralye.vic.edu.au/index.php?categoryid=9
http://www.aussiedeafkids.com/Phidcoz/early_intervention.html
http://www.deafchildrenaustralia.org.au/html/s02_article/article_view.asp?id=362&nav_cat_id=215&nav_top_id=67&dsb=1179

As far as other intervention programs that might run playgroups in addition to therapy groups you could try contacting the Yoorala Society of Victoria: 9359 9366 or the following site might help too:
http://www.office-for-children.vic.gov.au/children/ccdnav.nsf/childdocs/-AC92DB94286EC4AACA25700A007CC5F4-5667ED6E356C591ECA25701B001F678D?open.

Your local children's hospital should also be able to point you in the right direction.

Hope this helps :fingerscrossed:

[jessgray]

thanks deaf kids australia rang me after i emailed them they are sending me some info:thumbsup:

[mummyof5]

Good to hear there is some helpful info on it's way Jess.:thumbsup:

[jessgray]

:yes: yep i am pretty happy

[Gloominous]

ARGHHHHH I have had it. I dont want to do this anymore. After taking the movie out of the DVD (AFTER DD had turned the tv off) it ends up being a screaming, scratching free for all, after 10 mins of that **** when i finally get to ask what's wrong the answer is.....birthday. WTF!!! I want to be able to have a conversation, a real conversation with my child. Is that to much to ask?

[jessgray]

:hugs: :hugs: