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Old Feb 21st, 2012, 13:08 PM   #1
gezma
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Anyone with similar experiences?


Hi Everyone,

I'm coming to join this section, in the hope that someone can understand what we are going through, how we are feeling & offer some support.

My DS is 13, nearly 14 months old. And we've got major concerns about his development. The HV is aware and he has been put down for hearing tests (which we have no worry about his hearing) & development help. We've got a history of special needs in our family.

He is not walking yet (but no worries about this as he's starting to pull himself up), but the worrying thing is, he's not waving, pointing, clapping, he's just generally very slow, and not really alert like other babies his age. We've got no words, hardly any babble.. if you encourage him to get something he doesn't understand..

He is so loving & smiley. He loves us reading books to him and pulling down the flaps, and he feeds himself with his fingers quite well. He won't hold a sippy cup though.

He just seems very very slow, it's hard to explain.

Does anyone have any experiences? I've spent the past few months in tears, trying to come to terms with things. We've also got a DD who is coming up 4 who is very very bright, and we've got no concerns about, so we know from experience something isn't right.

Thanks for reading, and i hope someone can understand how we are feeling and offer some support

Thanks x


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Old Feb 21st, 2012, 15:12 PM   #2
Marleysgirl
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Ask your HV or GP for a referral to your local pre-schools support service (your area may be covered by 'Portage' which is an outsourced service, it's on google!)

Our son Andrew was referred to the local pre-schools service when he was just under one year old. He was delayed developmentally due to his extreme prematurity, but got further delayed due to a period of epileptic fits; it was the epilepsy nurse who referred us. He is now 30m actual age (27m corrected) and is delayed by at least six months but possibly more. He has a hearing impairment which doesn't help the situation! Physically he is fine, cognitively he is way behind his peers - it was only this week that he worked out to use a drumstick to hit a drum, rather than his open hand.

I'm not sure if it's fortunate or unfortunate that he is our first child so we have no comparison We are very laid back in our attitude, there's no point us stressing about what he can and cannot do. He'll get there, it'll just be in his own sweet time.


 
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Old Feb 22nd, 2012, 01:38 AM   #3
gezma
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Join Date: Nov 2010
Location: Midlands, UK
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Quote:
Originally Posted by Marleysgirl View Post


Ask your HV or GP for a referral to your local pre-schools support service (your area may be covered by 'Portage' which is an outsourced service, it's on google!)

Our son Andrew was referred to the local pre-schools service when he was just under one year old. He was delayed developmentally due to his extreme prematurity, but got further delayed due to a period of epileptic fits; it was the epilepsy nurse who referred us. He is now 30m actual age (27m corrected) and is delayed by at least six months but possibly more. He has a hearing impairment which doesn't help the situation! Physically he is fine, cognitively he is way behind his peers - it was only this week that he worked out to use a drumstick to hit a drum, rather than his open hand.

I'm not sure if it's fortunate or unfortunate that he is our first child so we have no comparison We are very laid back in our attitude, there's no point us stressing about what he can and cannot do. He'll get there, it'll just be in his own sweet time.
Thankyou, and thankyou for sharing your story..
We are on the waiting list for portage.. but they won't tell us how long the waiting list is. HV is coming out again in a few weeks to review any progress since his one year check up (of which there hasn't been any), so going to see if any more can be done. Just feel like he needs some additional support, but don't know how to get it.


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Old Feb 22nd, 2012, 08:04 AM   #4
lisa35
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Join Date: Jun 2009
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You seem to be going down the same route I have been down, Finlay sounded exactly like your DS and the first thing we did was get his hearing checked which was fine. Hope you get some answers it's worrying been a parent of a child & not knowing what is wrong with them xx


 
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Old Feb 22nd, 2012, 12:46 PM   #5
gezma
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Quote:
Originally Posted by lisa35 View Post
You seem to be going down the same route I have been down, Finlay sounded exactly like your DS and the first thing we did was get his hearing checked which was fine. Hope you get some answers it's worrying been a parent of a child & not knowing what is wrong with them xx
Thanks for your reply, could you tell me more about your LO if you don't mind? what help did you get? where did you go to get it? How is he now?
Thanks


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Old Feb 22nd, 2012, 13:13 PM   #6
lisa35
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He has autism I didn't notice that their was something wrong with him until recently. My DD social worker asked why he wasn't responding to his name so he got his ears checked, then few months later I started wondering why he never made eye contact etc. My DD social worker asked me if I thought Fin had autism or aspergers & this got my brain working over time so made an appointment to see doctor who referred him to a pediatrician. He was then referred to hospital for a full assessment & his diagnoses was autism. He is still the same no change.

I am getting help from portage group they come to my home once a week to show me how to interact with him, I am also starting to go to a group soon to meet other parents & kids with autism so looking forward to that, I am still awaiting for this to start. He also goes to a special needs nursery one day a week at the moment & getting another day funded so their is lots of help out there.

Hope this helps you


 
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Old Feb 22nd, 2012, 13:15 PM   #7
lisa35
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Join Date: Jun 2009
Location: N yorkshire
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He has autism I didn't notice that their was something wrong with him until recently. My DD social worker asked why he wasn't responding to his name so he got his ears checked, then few months later I started wondering why he never made eye contact etc. My DD social worker asked me if I thought Fin had autism or aspergers & this got my brain working over time so made an appointment to see doctor who referred him to a pediatrician. He was then referred to hospital for a full assessment & his diagnoses was autism. He is still the same no change.

I am getting help from portage group they come to my home once a week to show me how to interact with him, I am also starting to go to a group soon to meet other parents & kids with autism so looking forward to that, I am still awaiting for this to start. He also goes to a special needs nursery one day a week at the moment & getting another day funded so their is lots of help out there.

Hope this helps you


 
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