Am feeling guilty as I didn't see a HV from 12 months onwards

[Ben10isthespawnofthedevil]

I know it is ridiculous as DS would be DS (dyspraxia and suspected ASD) no matter what. But we moved when DS was 17 months old and the HV one day just put a note through the door that they had viisted - I work FT so rather strange. Left a message on their voicemail to explain that I worked FT and never heard from them again. I didn't think any more of it as he was just DS and that was my lot so to speak........So he missed his 18 month check where I now understand that they would have done the CHAT. DS was difficult from birth and I now understand why and it feels like I have missed the early intervention that would have helped him.

We are now doing SIT at nearly 6 years old and just 2 sessions so far has seen a massive change in his motor skills and even his language - he is now really grown up words suddenly. Makes me think even more that had it been picked up earlier, we would have been able to help him earlier.

In my area they weren't doing CHAT 4 years ago. Even now lots of health visors haven't heard of it. I think you're feeling guilty over a test which may not have been done, a missed diagnosis that still wouldn't have been picked up, and early intervention that wouldn't have been offered.

don't feel guilty ben10, you returned the call, what more could you do. I know round here they don't do the 18 month check unless you have concerns as a parent about your child. Haven't seen my hv for well over a year and ds2 was 2 at the weekend, they say these things are available but in reality unless you know to ask for them they are not, that's how it works here.

they dont do CHAT as standard ime. DD1 is 8 years old and failed countless 2year checks, but still wasnt dx till 6years old, dd2 passed her 2 year check but was dx'ed at 2.5 and offical dx at 3.7years.
Dont beat yourself up about it, I have seen a HV in years.
My friend works for hv team and does the 2 year checks and admits that unless a child was serve Autism, its rarely picked up. Sometimes she makes a reason to come back if she has a feeling, but she is great at spotting it, others not os great :(

Thanks all. It hit me when I looked in his red book and realised that there were loads of missing sections....

At least I know that it probably still wouldn't have happened as apart from lack of speech and only just walking at 18 months, the rest of his behaviours were just DS to me and I wouldn't have even mentioned them!

ben, you might not have missed a lot:
no CHAT here either. also no 18 month/2 year check up in my area. have to say I find my HVs pretty useless. they have "assessed" DD's s&l since she turned 2 (DD is now 3) and have told me repeatedly she is fine (when she was not). they also did some other developmental check ups when DD turned 3 (because I insisted something is not right with DD). was told DD is fine and I am the problem (expecting too much ).

DD is now 3.4, we are under the dev paed and SALT. (referral via GP as HV would not refer). DD has a severe s&l disorder with severely delayed language and other issues (might be asd, might be not). the jury is still out. IME, HVs are a complete waste of time and don't know anything!

sorry about the rant but it still makes me so angry if I even think about how they fobbed us off for so long.

I don't honestly think it would have made a difference. I remember contacting our HV right from when ds1 was 18mths old (no language or attempts at communication and seemed deaf). They weren't remotely interested until he failed his 2yr check. And even then they just put in a referral for SALT and didn't contact us again.

The CHAT test isn't offered around here, even for siblings of children with ASD.

another one saying that the CHAT test isn't routinely done.

in our case it ws 5 years ago, not 4, but I had to ask the HV to administer it (she was happy to do so, but hadn't mentioned it until we did)

and then with dd2 - not done either - this would be 2.5 years ago.

don't beat yourself up - we all have times where we wonder if doing X or Y (or NOT doing X orY!) has changed the course of events, but honestly - you know the answer deep down.

your ds is en route to getitng the help he needs - he is getting this because you are making it happen. you are making it happen because you are a fantastic mum who wants the best for her ds, and will fight to get it.

:) thanks again ladies.

What exactly are the HV meant to do? My only dealings with them was to get him weighed. I seem to see all the time that they either interfere too much in the way that a child is being brought up or the alternative which is worse IMO that you ask for help and they don't help with it......

Don't feel guilty.

I relocated when ds was 18 months old. We registered with a GP and the HV visited routinely once before going on mat leave. She wasn't replaced for many months and then by a succession of part time ladies who were very busy flitting between 3 or 4 surgeries. All very nice but no continuity and all said the same thing to my fears that something wasn't quite right about ds. Because they were temporarily filling in, I think we were never really SEEN.

One day the HV's assistant saw ds having a meltdown in the local library.....me in tears. She visited our home and SHE put us on the road to assessment for diagnosis. She did say later, that we'd slipped through the net and ought to have been referred earlier but, GP just said "let's see how things pan out"!!! And the many HV's were a waste of time.

I had a red book full of information..... But we still struggled to get the 'right' attention for years.

Remember that your school didn't pick up anything for the whole of reception, that is professionals spending 30 hours a week with him. It is highly unlikely that a hv would have picked up on those few characteristics which are evident looking back (hind sight is a wonderful thing) but were probably hardly noticeable at the time. I bet if you'd mentioned them to hv back then they would have reassured you that all dc develop at differing rates.
It's natural to feel guilty (it's what motherhood is all about!) but much better to focus on the great progress your ds is making now.

Don't feel guilty Ben10.

They don't do 2 year checks here either. You get a very brief questionnaire through the post which asks if you have any concerns in certain areas, but doesn't explain what might/should be a cause for concern.

In fact, I had one through on Monday for dd (who is already 2.4 months old). I was furious a bit cross, as not only have they rezoned the HVs so we have been signed off by ours and put on the list for one at a different surgery - she has never once been in contact.

My old HV was fully aware that ds was going through assessment when she signed us off and being really supportive - even talking through and taking the time to understand my worries re delaying the MMR and making a note for them to stop inundating me with 'reminders'. She was such a great HV and I really miss her. We've been on the new HVs list for nearly 9 months now and haven't heard from her once. To me, having it in my records that I have one child with ASD, should flag up somewhere the need for a proper 2 yr check for dd - its no wonder so many children slip through the net at this age.

That said, I don't think I am going to bother anyway, as lovely as she was, my previous hv knew less than me about ASD and early warning signs and I've yet to meet one personally that would be able to spot it at this age. (Of course I could be wrong and my new hv might be an expert - but how would I know? )

Anyway, thankfully I have absolutely no concerns about dd and with her being number three - having one with dxd ASD and one with noticeable traits, but nowhere near enough for a dx - I feel far more confident of my own judgement this time round.

Like I said Ben10, try to put it out of your mind, we all have our lists of 'what ifs' and 'should haves', but really they are just wasted energy, which we could be using to help our dcs in the here and now, iyswim.

HV are there to keep an eye of childrens health, so weighing, doing developmental tests ect. They used to do "wellness" visits but because they are so stretched with supporting families in crisis and child protection they dont have time to see "normal" families with a few concerns.
Its a sad fact, that many HV are upset about, and they are aware that families slip though the net unless they are CP issues :(

Dont feel guilty at all - I called HV when DD was 20 months old as I had concerns and she did refer DD to SLT who did an assessment when DD was just turning two. SLT did not seem to think there was a problem and signed DD off (when I mentioned that DD did not seem to like us playing with her SLT seemed to think it was amusing ) Anyway HV came back a couple of months later and completely dismissed my concerns even when I mentioned DD was still not pointing. I left is for one year and then called HV when DD turned 3. By this time it was a different HV who couldn't decide whether to refer DD or not without getting advice from her colleagues . Anyway, to cut a long story short DD was diagnosed at 3.5.
I was really angry with HV's at first but when I sit and think about it I think DD's symptoms were probably very subtle at the time. Even when we took DD back to Paed for a review a few months back he commented that she did not seem to be presenting at ASD and if he had not seen her before it would not be the first think that crossed his mind .
This is turning into an epilogue but I think my point is that there is certainly no guarantee that your sons difficulties would have been picked up so it is pointless worrying about it. You are helping your DS now and he is six so although that seems old the age of development maturation is 7-8.

I will also add I saw my Hv for dd1 countless times and was told she was fine and I was just worrying too much because she was my first!

We are all just programmed to feel guilty from the minute of birth! thanks all

Okay, so I was summoned to the HV for the 18month check for dd which due to staffing issues occurred when she was 2yrs 3 months.

The reason I was told I HAD to come to the clinic (yeah I know I didn't have to but they did insist) was because she was at high risk of ASD because her brother has it.

Now, what they have failed to acknoweldge is that if they were any good at identifying ASD, then they would have identified it in DS when he was 2yrs 1 month at HIS check, which, they didn't.

So I'm a bit bemused why they think they have any rationale to summon me to clinic with dd.

Please don't feel guilty. I doubt the test would have been done as standard and I further doubt that your ds would have been flagged up for the CHAT test anyway.

It's probably just an illusion, - as are most services for children with disabilities.

If I hadn't have worked so hard to get ds his SALT as early as I did, I would have felt guilty, but I can assure you it has made very little difference whatsoever. The only meaningful difference it has made is that I don't feel guilty for not having done it iyswim.

Thanks Starlight. I am now thinking positively rather than negatively about the whole thing. He is getting help now at 5 rather than 11 or 12 when he fails at secondary school. He is presenting minor symptoms at present anyway so if he is on the spectrum it will be AS or HFA and he understands some of his differences already due to the dyspraxia and SIT.

Hi Ben10. No physical 2 year check here either, they just do a phone questionnaire, even for my DS3 when DS2 was already DX! I found out about CHAT at my Earlybird course, already too late for DS3. I recommend CHAT to all concerned mums of young children who ask me the question, "When did you first become concerned about autism?" as they won't get it from their HVs. I also recommend it on here but it's only a screening test, it's not that accurate, but might prompt you to get more help. And knowledge is power as far as I'm concerned.

My HV saw DS2 loads of times as I'd just had DS3 but was never concerned except for a referral to SALT that I asked for. It was SALT that put us on the path to DX not the HV.

We do all feel guilty, all the time. I wasn't concerned about DS2 as DS1 had a severe but NTish speech delay, so it I thought it was normal for my family. DS2 was DX very quickly in the end, so it was blooming obvious to all and sundry except for me and the HV!

A bit like my post in here, pipinjo

I guess it is staff shortages......huge caseloads.....whatever. HV's used to be qualified RGNs with an additional Midwifery qualification. Not sure how they're trained now but, some of them just seem I'll prepared for the role.