Here some suggested organisations that offer expert advice on SN.
aargh! rant!(11 Posts)
I have just had the really lovely lady from Portage around to asses ds, following his paed appt in February.
Apparently, ds has to be 6 months behind in 3 or more areas to receive Portage. Fine. He is, according to his paed report. Except he isn't, according to Portage, as they lump the three areas in which he is behind into one section in their view (never mind that that only leaves 4 sections overall, so a child would have to be really quite delayed to receive help, according to their criteria).
She also thinks that no speech at all at 20 months is fine. I'd "be surprised at the number of children with similar lack of speech" apparently. Well, no. I wouldn't. I will remain horrified that they are counted as fine, though. Back when dd1 was a toddler, the rundown was 50 words by 18 months, 200 by 2. When did this change? (or has it only changed informally, due to the number of children falling short?)
She assessed him as 'fine' because he:
put a ball down a ball ramp (no expression, no joy when it rolled down, no excitement)
carried a car about (didn't push it about, no 'brrrm' noise, nothing, just held it)
came to me a couple of times when she spoke to him, for reassurance (yes, good)
otherwise, he pottered about quite happily picking up the odd toy (but not really playing with it) and crawling about under the table. I don't think he made a single sound while she was here (literally not a single sound - no babble, nothing).
He is 'delightful' and Ishould 'enjoy him'. Well, yes he is, and I do. I also remain concerned about his development, especially given the family history. Her view really is that there is not much wrong.
What on earht has happened to services in this country?
the outcomes from ds' paed appt were:
refer for speech therapy (which turns out to be an indeterminate waiting list, followed by an empowerment workshop )
Portage (not eligibe as POrtage assess him as fine)
blood tests to rule out Fragile X etc (which everyone agrees are a formality only)
and that's it, until he is gone 2. wtf happened to early intervention?
<sigh> back to the private route, I guess.
It was the same when ds was a toddler (9 now)
Roll up sleeves and get on with it or you will strangle someone and/or blow a gasket.
oh, I am very definitely getting on with it, zzzzz. I wasn't expecting great deal, but Portage when dd1 was little were the one reliable service (until we started ABA, which clearly is the work of the devil, and then they dropped us like a hot stone).
it was more the utter bollocks justification of why she couldn't provide us with her services. I know that ds is not the worst example of a delayed toddler there ever was. I know that there are famlies in greater need. So why not just tell me that, rather than tell me how he isn't actually delayed (he definitely is) and that he is fine (which no one can know, we are still in wait-and-see teritory). If I didn't have the background I do have, and the grounding in child development and general SALT?OT?sensory needs thanks to dd1, then I might have actually believed her. She has no remit to tell me that ds is fine, playing well, and that his lack of speech is not a concern.
am trying hard no to blow a gasket, it's been a hell of a week, with some big decisions taken here, dd2 dx'd with AS, and we're abut to sell the house (speculatively looked about, found a house we liked and suits us, poke about puuting the house on the market yesterday and have 4 viewings lined up already - need to get slatternly hovel up to decent viewing standard by tomorrow -eeeek!). so lots of my frustrations stem from that.
but still. useless carrots I could do without.
she did say that if I still had concerns in 6 months I should get back in touch. and then did a cats bum face when I told her that I woudl be doing something about it long before 6 months was up, as I didn't believe in wasting time. that was a moment I probably shouldn't have enjoyed as much as I did
I agree, it is so cruel telling parents there is nothing to worry about, when you don't know that.
My DS is 28months and I've just been told the same thing by HV. He doesn't say a single word and he was asleep for the review, but every concern that DH and I shared was met with "They all do that".
DS woke up as we were about to leave. She weighed and measured him. I told him, bending down to his level, very clearly and with gestures, to put a toy truck back on the table. "Well, he understood that!" was her response. When measuring him she asked "Where's Mummy?" He turned and looked at a box of toys on the opposite side of the room. No comment. DH and I left, knowing that she wasn't prepared to accept/admit that DS needs help.
It is so frustrating!
I get it Alarm. You can live without portage but you can't live with the given justification for no portage because it is quite frankly appalling that anyone can get away with using it.
Baby Ds (same age, same issue-ish) doesn't talk but yesterday he counted to 10. We got our first appointment with randomly qualified consultant (not paed) next week after being referred before Alarm's.
Feel quite lucky I'm not yet in pissed-off land yet.
Yes, RaRa, your post at 18.51 sums itup well.
Hope your appt goes well. And welcome, in advance, to the land of the pissed-off.
I am considering a letter to Head of Portage, but am thankfully too busy to do anything About it atm. Am still fuming that she felt she could dismiss my concerns - apparently lack of pointing is nothing to worry about either. Ds gets what he wants by climbing, so no need to point
I could weep for all the people she will see who will be falsely reassured by her crappy advice.
I was in your situation and i can totally understand how you feel. My little one was diagnosed at around 2 Years old. Portage was referred at 20 months and waiting for 7 Months, then it is stop when little one was 3 ??? they said it is early intervention and would not continued as he will be referred to the Nursery SALT.
My best advises are
1. Portage was useless, dont waste your time to fight with them. I was ending up teaching the woman how to play with him myself. You can look into Floortime, ABA , SONRISE, TEEACH at this stage, just get the principles and play with your child for now.
2. ABA is work best at this stage if you can afford it. If you start, keep record and video them so you can use them to fight against LEA for funding later.
3. SALT is a long wait here too, I had it when he was 3.5 !! shocking and useless. I was thinking that I could be SALT at that time because she only kept saying "you are doing great" it is not because that I am super good with SALT but it was her knowledges was too low to the ground.
4. Not sure if you have got Diagnosis for him yet ?? if not Be prepared to fight because They will not push if the parent is not fighting.
I hope it help.
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