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(13 Posts)
eslaymum Thu 24-Sep-09 09:31:30

Just hoping for some support from mums & dads with similar problems,as feeling rather alone.My dd is two & a half,she does not walk(walks on knees & cruises)& does not talk(started to say dada acouple of weeks ago),she is currently being seen by the hospital paed(had numerous bloods,x-rays,hearing tests-all clear,awaiting results of recent MRI),SALT,physio & community paed.Every professional is perplexed by her & has not diagnosed her.She is a bright,very sociable little girl,she interacts with the world very well apart,of course from not talking.
This is really getting me down and would love to hear from others,thanks.

eslaymum Thu 24-Sep-09 09:32:47

Just hoping for some support from mums & dads with similar problems,as feeling rather alone.My dd is two & a half,she does not walk(walks on knees & cruises)& does not talk(started to say dada acouple of weeks ago),she is currently being seen by the hospital paed(had numerous bloods,x-rays,hearing tests-all clear,awaiting results of recent MRI),SALT,physio & community paed.Every professional is perplexed by her & has not diagnosed her.She is a bright,very sociable little girl,she interacts with the world very well apart,of course from not talking.
This is really getting me down and would love to hear from others,thanks.

MavisEnderby Thu 24-Sep-09 09:44:29

Hi there,I have a dd with severe developmental delay and it took a long time to get a dx (lots of mris etc)

Obviously my dd is different in that she has intellectual delays and your lo sounds as if she has normal intelligence from what you say.

I can relate to the "alone" feeling,but have found the special needs board to be a good support

Re the talking has the SALT suggested signing at all?I found that learnign simple signing (LIKE MAKATON) with dd gave her a way of communicating simply and somewhat reduced her frustration.Also we have pictures for her to look at laminated and velcroed all over tha hous eso she gets pictoral stimuli too if that makes sense!
The sn board ladies will probably be able to suggest other ideas in a much more eloquent way than I

With mobility dd had a lot of issues but eventually took her first steps at 3,after a lot of physio input and the help of AFO splints.It felt like forever but she did get there eventually,as I am sure your lo will,it just takes a bit longer than other children

Your daughter sounds lovely.I think the dsifficult part is being in limbo without a diagnosis.I think one of the best things a paed said to me was "We may never get to the bottom of it but at the end of the day she is loved and she is your daughter,and the important thing is to focus on what she CAN do and develop that,rather than focus on what she cannot" which I think I needed to hear at the time as I was beginning to wallow in a bit of doom and gloom (Think it was the endless appointment,tbh)

Sending a comradely hug

koninklijke Thu 24-Sep-09 09:46:06

She'll probably end up as a highly respected news reader!! If she's healthy, try not to sweat it. I apparently did not speak until I was about 3. My dad said and I quote 'we thought you were retarded'. Perhaps in the interim you could teach her to sign? As for the walking thing- if she cruises, then her feet are ok. She's not likely to be still cruising when she's 30! Well maybe, but it will be a different kind of cruising!

ChopsTheDuck Thu 24-Sep-09 09:54:44

Can't really offer any useful advice, but I know how you feel and didn't want to ignore your post.

You might get more useful support on the sn board. All I can say is it sounds like you are seeing all the right people, and all you can do is focus on supporting her needs, and the reasons for her delay won't be as important.

MavisEnderby Thu 24-Sep-09 09:58:38

You can find the sn board if you click on topics and scroll down.

You may find that the advice is a bit more helpful than that on the main board,and posters don't tend to use insulting terms like retarded in their descriptions.

Most will have been through the heartache of realising their child doesn't fit the pattern of what is considered "Normal" be it inphysical,social and intellectual terms,gone through the endless rounds of appointments and statementing,and the endless battle of fighting for their children to be recognised as just that.Much loved children,albeit ones with additional needs,and so will know where you are coming from wink

eslaymum Thu 24-Sep-09 10:07:15

Thank you MavisEnderby,you don't know how nice it is to hear someone elses story.We have been signing for about a year now,although dd doesn't sign to us,we continue to sign to her & it definitely seems to help & re-enforce what we are saying(as the SALT & even us are not sure if she has some limited understanding!)The physio & paed have diagnosed her as extremely hypermobile,but her fine motor skills are great.she has Piedro boots & a walking frame at present,but the progress is very slow.The paed laid it on the line at the last appt,saying when the MRI comes back if something is on it,the future looks bleak,failing that,she may achieve her full potential(just slower than others)or she will always be behind.Did I cry then!!But he also said exactly the same as your paed,that she is our little treasure & love her for who she is,which of course we do.Everyone who meets her comments on what a happy little girl she is.But it so hard just not knowing,but maybe we never will know,& that is something I will have to get used to!!Koninklijke,thanks for the support & giggle!!

eslaymum Thu 24-Sep-09 10:11:47

Have just posted same question on SN board,just want some support!!Thanks to all!!

ChopsTheDuck Thu 24-Sep-09 10:15:00

she sounds lovely!

My ds has hypermobile joints, and it does make walking so much harder. It's worth checking that they aren't causing her pain too, which would make her more unwilling to walk without support.

MavisEnderby Thu 24-Sep-09 10:16:05

Are you in England?I only ask this because if you have a child who is delayed in 2 or more areas then you are within the criteria to be reffered to the marvellous Portage service.Parents can self refer.www.portage.org.uk

eslaymum Thu 24-Sep-09 10:23:55

Have had a look at the Portage website,sounds good,but would I qualify & would I have to talk to my paed/SALT/physio before contacting them?Thanks again.

MavisEnderby Thu 24-Sep-09 10:28:06

Well,I guess both speech and mobility would qualify as 2 areas.We were referred by our paed but from what the Portage worker said afaik parents CAN self refer.Maybe you could ring/e-mail the portage organisation them to ask,if you have the time at all (I know how busy things can be).I found their service to be absolutely fantastic and really missed our worker when dd went to her nursery sessions at her school.

eslaymum Thu 24-Sep-09 10:38:35

Will contact my SALT about it,as she is my greatest ally,she tries very hard to help us even though she is busy.But there is a Portage office in our town,so that is promising.Regular support would be good as the SALT/physio only manage once every month or so.But I do feel bad asking for it,why is that???

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