Hey I'm bel I have 2 kiddies..
S was diagnosed speech and language delay disorder , receptive and expressive.
GDD then PDD-NOS
J was diagnosed speech and language del disorder, SPD and GDD then Autism
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02-02-2011 07:34 #11Senior Member
- Join Date
- Jun 2006
02-02-2011 10:37 #12
My 15 month old has been diagnosed as this also. We sort of new from birth he was at increased risk for this due to being prem and lots of other issues. We currently receive physio for motor skills, used to see speech and dietician for feeding issus (was tube fed until 5 months agao) and we will be seeing an OT soon for sensory issues as well as heaps of our regular specialists.
02-02-2011 13:30 #13Junior Member
- Join Date
- Feb 2011
Hey..i have a daughter who hasn't be officially named with gdd..but she is very behind in her development and won't be surprised when they say that...she has many other issues..we went to her eci worker today and i seriously want to share..she will get an extra carer for in the room but she will get to go to daycare this is big news for us it wasn't really a possibility before so we all think it will be really great for her to go to once in a while..also we are getting a walker for her..this is really massive for me..she was talking about it saying that my daughter physio has asked for specifics etc..but i have wanted a walker for a really long time and i can not wait for us to get it...i can not imagine our little girl with mobility..this has made my week..i really wanted to share that because this is really a great thing and i hope it is what she needs to be her own little person=) It is amazing how much a little thing can make struggles seem worthwhile huh? I probably seem a little silly but anyway!
09-02-2011 09:39 #14
Hi Everyone, I'm Kieran my little bub Bree has CP and is at high risk of GDD. To be honest I'm pretty sure the Paed thinks she has it, but won't diagnose this early (she's 6 1/2 months, 5 months corrected). An MRI showed that her myletin development is that of a newborn to 4 month old. At 6 months she has only just started smiling in her own way and gooing. We see the team of therapists like you guys. Currently we are working on head control and bringing her hands together. CP and GDD seem to go hand in hand since its hard to develop skills when you don't have muscle control.
I look forward to the day when she can sit on her own and when I can hear her first laugh.
Any advice on how to help her development is very much appreciated
Congrats everyone on their achievements. I have learnt in the past few weeks since the CP diagnoses that little things for most bubs are HUGE steps for us and deserve a victory dance and celebratory wine (you, not them!)
alpacamum how have you encouraged crawling? You must be so happy to see bub moving around!
sehan bub is on a supplementary feed tube atm and I am trying very hard to get her feeding orally full time. Any advice? We also see a dietician and ST, but any mum advice would be great! A BIG congrats on getting off the tube. It gives me hope that we can do the same
Lastly where is everyone situated? I live in Nth Qld about an hour from Townsville
09-02-2011 12:30 #15
We just started a playworks playgroup on Monday which is for kids with developmental delay and/or disabilities. It was excellent, run by an OT and a childcare worker, there were three other families there but others go when they can. It's mostly older children but my W had an absolute ball, and as soon as we got home he was trying so hard to do things. I think it's good for him to watch older kids play, he just wants to do everything they are doing!
Damamma I would've thought if you were in EI you would get higher priority? The EI playgroup sounds fantastic. Hope your appointment with the paed goes OK, have you seen them before? I loved our paed in our old town but not so keen on the one here. It's all about how you relate to them I think, and how they relate to you LO especially
mummyof9 wow thats fantastic the whole family is learning to sign. Can I ask how old your son is? Has he started preprimary now? How is it going?
hi Bel you sound like your two keep you very busy! How old are they? Where are they at now with their development?
Sehan well done on getting off the tube, it is so hard from what I have seen and heard. My DS was on tube for 3 weeks after birth but was keen to orally feed, we pushed and pushed for the nurses to stop tube feeding him and once he put on weight on oral feeds we had it removed. They were quite happy to send him home with it, (and the nurses found it easier than sitting there with me trying to BF for hourse on end) but it just seemed like it could cause more harm than good after awhile. I know lots of babies need them for much longer though. Is your DD eating well now? It gets so busy with all the appointments, doesn't it?
Rainsalot thats so great that you are being supplied with help for daycare. I think its great for kids to go, but I am hopeless and can't bear to part with DS at the moment. Maybe soon I will muster up the courage to put him in once a week or so. YAY FOR TE WALKER !! Babies just love it when they get moving, DS only goes in circles on the floor and he thinks he is AWESOME . I don't think you are silly at all I totally agree that little things can make the hard stuff so worthwhile!
kiz hi ! nice to meet you. Muscle control is a really important thing for all development. My DS has weak tone which is why it has taken him awhile to sit unassisted and lift himself up to crawl. It's great you are getting assistance so early though. How is she with feeding and sleeping? Aw I hope she laughs for you soon. Its hard I think too when you watch other babies progressing so fast.
I totally agree with milestones being a huge thing for us, I SMS'd my mum the other day just to tell her that DS had managed to drink from his sippy cup with no help, and she was super excited for me!! Ahh other mums sometimes don't understand, but mine does
The crawling we just did heaps and heaps of tummy time (which he used to hate) and propping him on his knees to get the feel of it. Today he was pushing off my hands and got up on his knees then straightened his legs in the air! I think he's going to crawl with straight legs! He thinks he's clever anyway. Spends all his time arching in my arms wanting to get on the floor now
I can't help with the oral feeds/tube feed but maybe other mums will have more advice for you.
Hope everyone is having a great week xx
11-02-2011 14:16 #16
Ash is eating well now, nearly 5 months off the tube. Slowly trying different textures but it seems we have a few sensory issues too. A bit of gagging with some lumps etc and other issues with face wiping, dressing etc- should be seeing an OT in two weeks for some suggestions. We also are heading back to the ENT as he still has fluid in the middle ear of his left ear so maybe heading for grommets too.
Kiz- I have a few feeding tips for you. It is hard to get them off the tube, especially the older they get. Will Bree take a dummy to suck? How much is she taking orally it is great if she will take orally, Ash became orally aversive after two months of going home- we were discharged from hospital with the tube for top ups originally but then he was overfed and started vomiting all the time severe reflux and then he was too full and not interested in feeding at all. Solids were our saviour but we joined a group called tubefedkids and with the support on there and the help of a paed in Austria we weaned him off the tube over a couple of weeks. It was extremely hard and he lost weight but it was the best thing we ever did, his development has improved since the tube came out- we had the ng for 11 months nearly and he was pulling it out daily. There is heaps of information on this site www.tubefedkids.ning.com run by a lady from tassie who weaned her son 2 years ago. There is lots of info. Does Bree need the tube because she tires when feeding, does she have a swallowing issue- we used thickner (karicare brand) to help him swallow milk easier. We also saw a speechie and dietician but it got to a point where they couldn't help us any further. Could Bree be weaned from the ng tube? Can she start solids? (we started them at around 5-6months even though Ashs tone wasn't great but e had a feediong seat to sit him in which gives lots of support) If so look at www.notube.at we did netcoaching through them but i know of parents who have done home based weans with therapist support.
Alpacamum- That playgroup sounds great, where abouts does this playgroup run? we are in Vic and we go to a hearing loss playgroup but would love to meet other families with kids in our situation. I wish we had pushed to stay in hospital to bottle feed Ash (couldn't breast feed which was very upsetting), we would have go trid of the tube a lot sooner. Hindisght is a wonderful thing- we just wanted him home after 2 months in hospital.
Rainsalot- every small thing they achieve is a big deal. Yah for the walker definately and good on you for making sure you got it. They get so frustrated not being able to be mobile. Ash is trying to crawl and very frustrated at the moment. Gets the legs going but because of his low tone mostly in his trunk doesn't get the upper body moving yet. Its great that you can try childcare too. We would like too but Ash picks up everything being an ex prem and its a trigger for his epilepsy so the neruo advised us against it at this stage.
11-02-2011 14:45 #17Senior Member
- Join Date
- Jun 2008
alpacamum ;my son is 5 years old .And yes he has started preprimary was ment to be 3 days main ****** and 2 days edsup but it now has been changed to 5 days ed surport because the school throught 5 days of aba theripity for him would be better then 2 as he has alot of behaviour issues this is his first week and he loves it .Its one of the best things we agreed to he has gone from being sent to the naughty corner up to 7 times a day at school to none at all they have more time to spend with him this morning when i droped him off they told him to get his lunch bag out of his school bag and straight away he got his bag yep he need some help to find the zip but when he did he opened it with the teacher and got his lunch bag out then when told to go with them and put it on the shelf where it goes he did .i was all smiles so was he as soon as i got out side i cried and cried and am crying now while writting this i had parents who droped their children off at normal classes looking at me as thow i was mad lol if only they knew what my son had just done.
11-02-2011 16:20 #18
Hi alpacamum! How are you?? (It's boymommy from due in feb thread Seems like forever ago!)
Anyhow, sorry to hear about your bubba's diagnosis. My DS2 was diagnosed 5 months ago with PDD-NOS. He has come so far in 5 months with ongoing therapy & intervention. I hope your little man progresses beautifully I hope you have lots of support from family & friends. Thinking of you.
Best of luck xx
And all the best to the rest of you doing wonders with your little bundles xx Keep up the wonderful hard work. It will be worth it.
Last edited by 2made3; 11-02-2011 at 16:29.
15-02-2011 08:42 #19
Just thought I'd pop in and tell you all that we're off to our 1st Early Intervention play-group for the year today. I'm looking forward to it, I always love the activities/experiences they have for the kids and its nice to chat to other Mums with similar issues. This year I'm going to make more of an effort to be honest and open about how things really are. Last year everything was new and seemed so overwhelming that I think I 'glossed' over a lot of stuff. I would always say things were 'fine' or that we had no big issues and that I thought we were doing well, which isn't a lie, I just feel like I'm going to be more up front this year.
15-02-2011 11:49 #20
Sehan you are doing so well with Ash! It must be so hard for them starting solids without having had things in their mouth, even bottle/breast etc. My DS has orally fed forever and is still having issues with lumps. The looks I get!
I know how you feel wanting your bub out of hospital- If Will was doing OK on tube feeds I might have considered it but he was really thin and not putting on weight at all: once he started b/fing at each feed and was allowed in my room (had to wheel him out every 6 hrs for a 'check')- he was allowed to just sleep and feed when he wanted instead of being woken all the time, fed every 3 hrs and (I think) not given enough milk in the tube.... he started thriving! But that's only my experience and the main reason for our feeding problems were exhaustion and breathing difficulties which were resolving. You do what is best for your baby and in Ash's case the tube was the best thing at the time. I was only in hospy for 4 weeks and that was horrible enough!
Well done on all the hard work you have put in to weaning off the tube. You are an amazing mummy!
Oh and our playgroup is run through Noah's Ark which is I think a WA organisation associated with a specialist toy library for SN children. Went again yesterday and loved it!
mummyof9 I got all teary reading your story! I so understand what a clever little boy and how amazing for you to see
hi 2made3 how is it all going? Glad to hear DS2 is going really well with his therapy. Thanks for stopping in.
damamma yay for loving playgroup! I understand the holding back and glossing over, in my old mothers group I didn't tell anyone about W's genetic condition because I just didn't really want to explain it all or have him looked at 'differently'. I'm getting a lot better with it. I actually felt bad yesterday at our PG as there is a little boy there with spina bifida who crawls quite well with his arms, and he is 3: theres my 11 mth old pulling himself up to stand using my hands and then doing yoga down-dogs on the floor..... I felt extra lucky at that point! But we all have our different challenges and that's what I find excellent to talk to the other parents there about. They understand so much!!
My proud mummy moment today: gave W a bit of my toast while I was feeding him his brekkie: (I usually give him something just to stop him sticking his thumb in his mouth!) ... and he put it straight in his mouth and took a big bite out of it! And then proceeded to much away quite happily!
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