To feel sad about 2 year HV assessment and ask for hand hold

[NaviSprite]

I have twins who will be turning 2 very soon. They were both premature and both very low birthweight so are behind developmentally. I am doing my best to try and help them catch up. But I don’t want to become so obsessed with it that I’m pressuring them too much and missing out on just having fun with them, so I’ve balanced as best I can between education (as much as one can educate a toddler any way 😊) and fun play, most importantly I’m following their signals on when they’re ready to try something and when they’re not. I push when I know they can do something but are choosing to be cheeky (DD for example has some basic words and knows ‘drink’ but will still resort to point and grunt when she wants a drink, so I will encourage her to ask with her words before giving it, if that makes sense?).

We got their 2 year assessment questionnaires through the post yesterday and I’ve looked through them... they are a no on almost all of the gross motor skills, some of the fine motor skills and DS is really behind on his language development.

All of this the HV knows as she’s been involved from rather early on in their lives and is a mum to twins herself. Hers are all grown up now but she sympathises because not only do my DD and DS have the prematurity aspect to their delay, but they have twin delay also.

I know the assessment isn’t cut and dry and keep reminding myself that I know they’re progressing, but it’s in small increments which me and DH notice because we’re with them every day, but they’re not the ‘leaps’ forward that a lot of Health Professionals want to see.

Just feeling a bit disheartened and I don’t have any other mums IRL (except my own and she barely remembers the toddler years) to talk to about the assessment.

Anybody have it where their DC didn’t ‘pass’ but went on to develop well, it just took a bit of extra time? As a mum of preemies I’m usually good at blocking out the milestones and reassuring myself that we’re on track, that my twins will get there eventually, but some days I look around at their peers and wonder if they’ll ever get there well enough that it won’t hinder their chances when they get to school of having a normal sort of life.

Sorry it’s a bit long, thank you to anybody reading my ramble and if anybody has any advice or encouragement please share (even if it’s just to say ‘FGS Navi stop being a twat they’ll get there in the end’ 😂)

No personal experience, but a couple of the babies in a group we were part of were recalled after either their 12 month or two year check. In all of these cases, they were assessed as reaching targets at the next assessment, apart from one, who was referred for SALT and now, aged seven, you would never know. They are still very young to have ‘caught up’, and it could well still be a case of needing time.

Thank you all for your wonderful advice and encouragement it’s been brilliant to read stories of similar situations (prem or not) where the person grew up with little to no issues. I do want the help but sadly all the surestart centres were closed in my area, only groups available are for toddlers who are more typical of their ages and DD and DS really didn’t like going to them because they got bullied a little bit (not actual bullying because they’re all toddlers but there was a lot of rough play that mine couldn’t handle because they aren’t mobile enough).

They love playing with the older children from next door (5 and 8 year olds) and it’s been beneficial for them because the neighbours can understand that they need gentle play whereas most children their age obviously don’t know that.

I don’t see the assessments as tests to be passed or failed, I understand they’re useful to identify potential areas where improvement is needed but when I opened them up and saw just how many of the excercises my two aren’t even ready for yet it made my heart sink.

The HV did say that they now correct ages for prem babies until the age of two rather than one, I’m hoping when she comes on the 11th (that’s when the assessment is due for) I can ask if we can try again at 2.5 but of course explore any additional support that they need in the mean time.

I know it probably sounds weird, being a SAHM with them is amazing but when the development is so slow going I get caught up sometimes in blaming myself that they’re not further than they are, which is stupid as I enjoy every day with them (just about) we go out and they’re usually very well behaved, DD has an amazing sense of humour even though she doesn’t speak much yet (not intelligibly anyway for most people) and DS is a gentle boy who loves to figure out puzzles and always comes for cuddles when we’re playing. I think I have to focus on that because it won’t last forever, fill out the forms as best I can and take whatever help the HV can offer 😊

Pour yourself a large glass of wine and remind yourself that by the time they are adults nobody will ever be able to tell they were early babies. They will catch up and they obviously have a great, caring mum to support them on their way.

Hmmm I know someone who was prem and LBW. Not crawling or walking at two and non verbal too. Still behind at 7 or so and by 12 completely caught up and largely ahead.

OP, my twins have just recently turned 3. They were only 5 weeks early but one had IUGR so was very small for his gestation and spent 2 months in NICU.

At 18 months DT2 had a massive skills regression and we were waiting on assessment for him. At the 2 year check, DT1 had very alarming scores and was also referred.

They were both diagnosed with ASD, at 27 months and 29 months respectively. It has been a very hard year but we are getting there.

My main advice to you is to get proactive and start referring yourself for things right now, and get learning about early interventions so that you can implement them yourselves.

Self refer to portage in your area. They will come and do an assessment and see if they qualify for support from them - they have been the best resource for us.

You may have SALT (speech and language) drop ins in your area - if so, go to one to start the self referral process.

If it’s motor skills they’re struggling with, insist on a referral to OT for assessment.

If they’re also struggling with social and interaction and communication skills, ask the HV to refer you to a community paediatrician ASAP. The waiting list can be long and it’s best to be on the list and cancel if things suddenly improve.

There are two books that have helped me massively with their development and while they talk about ASD specifically, they’re useful for any child with delayed communication / interaction skills:

• An Early Start For Your Child With Autism
• More Than Words (Fern Sussman) - this book is pricey, but the absolute best money I’ve spent in terms of language. It helps you to understand where your child is at, and how to help them progress to the next stage, and to see the positive signs of progress that you may otherwise miss.

It may be that it’s just a delay and they will catch up and there’s nothing to worry about- I truly hope that’s the case for you. If it’s not, you will cope and all of these things will help you.

Do they go to nursery yet? I would assess objectively whether they need more care than typical children of the same age - if so, apply for DLA (the assessment from portage is really helpful for this if it demonstrates significant delays as it goes into detail on each area). DLA means 15 nursery hours funded a week from the term after they turn 2, which has really helped the boys (and us to get a break).

I know you’re hoping everyone will tell you this is normal, and it might be. I know I posted here around the same stage and some members urged me to seek out assessment and support - I’m so glad I did. If you do and there’s no problem then nothing wasted. If there is a problem, getting in early is the best thing you can do for your child. There are delays and then there are red flags and they’re not always the same - I didn’t really consider the fact that my boys never pointed or stuck out their tongues, DT1 never mimicked anything and DT2 stopped mimicking suddenly and never started again - I knew that was bad but I didn’t realise how many red flags DT1 had. I’m very glad they were pointed out to me when they were.

We are now going through the EHCP process for the twins and I’m hoping we can either get specialist early years placements from next term or additional support in a mainstream nursery. They’re only 3 so this is much earlier than many kids get help. Plus I know I’ve done everything I possibly can for them.

We are also 8 days into a screen ban (in fact I’m counting down the hours it’s that bad 😂) but it does seem to be making a difference to their attention / interaction so I’m going to stick with it. I’m not sure if you went the same way I did of relying too much on CBeebies while wrangling twin toddlers (it’s so easy to do) and it’s fine but for us it got too much. If they’re finding communication difficult I would try to limit screens or have some periods without them at least, it might help.

It’s so hard dealing with this worry - I’m here if you want to chat

I know it’s tempting to ask them to reassess later but I wouldn’t - if they meet the threshold to qualify for referrals, take them. Otherwise you’re just delaying getting help for six months, and in six months you have no idea where you’ll be - worst case scenario is they’ve totally caught up and you cancel!

Make sure there are referrals made to everyone relevant - paediatrician, OT / physio, SALT, portage, etc.

Accept any interventions offered. My twins have really benefited from Speech and language therapy and some sort of dance and movement club. Maybe see if there are any things like that going in your area.

@SinkGirl thank you so much for such a comprehensive response and I have been attempting some of what you’ve suggested (SALT and physio) but I hadn’t heard of Portage until I started this thread. I lost my third child this year to stillbirth and that knocked me back a lot and I lost my tenacity, I think I need to get it back and start fighting for the referrals/aid where I can. Thank you for both the book referrals as well.

When I said to reassess at 2.5 I meant to try it again to see if we have had any improvement. I definitely won’t reject any referrals that might come from it 😊

Whilst I’m heartened to read that there are plenty of cases where the child caught up - it doesn’t mean I’m going to bury my head in the sand and hope that will happen for me - just wanted to say that in case it seemed I might shrug it off 😁

My DS wasn’t a twin or prem. he failed pretty much every point on the 2 year check questionnaire. He had no spoken words at all but would sign juice and biscuit. He couldn’t jump, couldn’t mark make with a pen.

He is now almost 3 and is ahead of most of his peers. He speaks in full sentences, is fine with motor skills, can count to 30, recognise digits to 20 and can read cvc words. He just blossomed all of a sudden.

Your twins will do things in their own time and as killing as you can see them making progress try not to worry too much.

Thing is op, it's the squeaky wheel that gets the help so I agree with sinkgirl you have to be 110% proactive and fight their corner for everything that's going. Doesn't matter if they turn the corner. You can always come off the wait list and comingoff is much easier than getting on. If littlie support is anythingnlike teen mh/neurodevelopmental disability support, do follow up every conversation in writing noting what has been agrerd and the potential time frame and request they notify you in writing of Ny changes. Keep copies and send by tracked delivery and keep the tracker confirmation. The NHS is bastardy at moving goalposts.

And I'm sorry about your loss - ds2 would be 22 now - I promise the acuity of the pain stops

Oh and in advance of actually receiving the 27 mo questionnaire (let's just say I was expected to be psychic and we should have apparently turned up to DS appt yesterday), I downloaded it today.

I am sure he's going to be down on gross motor as he still can't jump and probably on fine motor too as he has NO interest in drawing lines like mummy (and that's changed slightly from the 24 month version) . But unlike at 15 mo, he's way ahead now on communication and social skills bits

He's 27 mo and was born (induced) at 38+4 so not in any way prem.

I have no concerns as I can see his skills are changing and developing. Just not at exactly the rate they want. I will not be very happy if they suggest he needs referral for motor skills- he's always been on the late end for those. He's a big boy and it takes a while to figure out what to do with his limbs. To be fair, at 37, it does for me too

Have just sent emails to our local Portage and SALT clinics (if that’s the right term??) to request an appointment. I’m going to call their GP in the morning and try to get an appointment ASAP to discuss my worries as well. I managed to get them from below the bottom centile onto the 9th centile which for me is a big achievement so I know I can do this as well. I just need my courage back and as a few have said, it’s easier to come off the lists for additional support than get on them.

I have been told we qualify for 15 hours of nursery time when they turn 2 and I really would like for them to go and be confident that they can manage with their peers. They don’t have any indicators of behavioural issues with other toddlers, they’ve been on the receiving end of bites, being pushed over, toys being snatched off them etc. at the playgroups which we tried and they just cried because they didn’t understand. One child even pushed my DD over and tried to stamp on her - parents did nothing to correct the child so I had to stop taking them because I nearly blew up in a very nasty way (at the Mum not the child).

They interact well with each other, in a way I’d expect children their age to and that gives me some hope 😊

My ds had about five words in his second birthday. By the time we had the HV appointment for the test he was 27 months and speaking in sentences!!
They can make so much progress at this age in 2-3 months.

@Harrysmummy246 I feel the same with my two - when we spend every day with them we see the development and with HV and other professionals they only get a window.

Mine travel really well but just haven’t quite worked up the courage to walk unaided. DD didn’t stand until she was 18mo but when she finally tried it - she was as good as her brother who started standing at 13mo.

I think the referrals will help for me because when I’m really honest, I am struggling with giving them one on one time and when I do manage to get it with them, sometimes I can see the benefit almost immediately. But if I do it at the wrong time for them, or they’re just not interested in focused ‘play’ I run out of ways to keep their attention.

I think what sparked this was a comment on another thread - something along the lines of a child’s brain at this age is amazing with such a capacity to learn, but like most things if they don’t use it, they lose it. This in tandem with my MIL constantly boasting how DH had already caught up by now (he wasn’t as low weight when born and didn’t spend as much time in NICU and also had the benefit of having 100% of her attention!) has shaken me more than I thought it seems.

Hi OP,
As professionals we know the ASQ isn't everything. It's a tick box exercise which has its place when it comes to identifying need for early intervention... however you already have a good relationship with your HV who knows you and your children so has abit of something to go off other than just the ASQ summary.

People saying to wait till they are 2.5yrs... this isn't helpful as the questionnaires go up in age bands so they'd just be on the higher questionnaire and still score down. We do not correct the ages of prem babies once they hit 24m.

OP, sounds like you are doing everything right! SALT and Physio would probably benefit your children alot and your HV will look into this when she sees you. Don't worry about it! The 2 year asq is not everything! I promise!
Message me if you would like to talk further, I could answer any Q's you have...

@NaviSprite
In my area they did the 2 year check at 2 yr 6 month because they said so many toddlers were failing. Is there an option to do it later? But if not please bear this in mind and maybe it will make you feel a bit better. This was in Southwark and I only know this as I was expecting a 2 year visit so phoned and asked them about it when they explained they did it 6 months later.

Do you have a pre school that takes children from 2 near you? A couple of mornings a week could maybe help them? I work in one and children seem to come on loads when they start, I think it can often be from mixing with slightly older children x

It's a bit different because this child is bilingual not premature or a twin. But her family speak mainly their native language at home, and English when out and about. This child also had a lot of "no" answers, but a few months later something just clicked with her and she caught up amazingly quickly. I believe she's now 2 and a half and whilst I wouldn't say she's totally caught up, her language is much better, as is her social skills, her understanding, and her motor skills.
You're doing amazingly from the sounds of it, and this time next year I'm sure the hard work will have paid off.
Something to keep an eye out for is are their toys educational eg the toot toot animals that make the correct sounds, or are they mainly quiet toys? And is there lots of singing? The grand old duke of York is a good one as you can lift them up for top of the hill etc, as is incy wincy cos they need to make the spider shape. Puzzles, drawing, and basically any messy play is good for their motor skills too, and if you try to get them to recognise letters and copy them that could help (they won't recognise the letters for a while, but just copying them out for a while can help. Start with their names, "mummy", "daddy", their favourite animals, any pets names and what animal they are etc. Label toy boxes with the words and a picture. The "that's not my" books are good for sensory as well as labelling different materials.
You're doing amazing, and really don't worry about this check, if anything is flagged up they tend to wait a few more months before they start investigating I've found x

Op I know you've had plenty of encouragement on this thread, and apologies I've only skimmed it, but just to add my two pennies worth, as it were -
I'm a twin, prem (31 weeks). I didn't learn to walk til I was 2, twin was only slightly ahead. We were behind in all areas until school age, mum was warned we might be statemented at school.
My mum tried, in her own way, but we didn't have great parenting. In modern standards it would be neglect. I moved up to junior school (7yrs?) the only one in my class unable to tie my own shoelaces or tell the time on a clock. Twin had a lot of SALT input. Both small for our age, as well as undernourished, underweight, terrible at sports, no coordination, minor health issues etc.

Thirty years on I've got three degrees and without wanting to blow my own trumpet, turns out I've got quite a decent IQ - academically I 'got it' at the end of primary/high school and that kept me afloat despite the aforementioned issues. My twin had more emotional needs which have affected him growing up, but despite doing zero work for his GCSEs came out with C's and above - again, he's got a decent baseline of intelligence despite not having a good start health wise, or in parenting.

Neither of us had the chance to thrive until at least secondary school - when we were more independent - and even then, we had some setbacks due to things like violence at home, no support with education, no extra curricular activities etc.

It IS harder to catch up, and make leaps of progress, than it is to follow a linear path - and statistically speaking, 'most' children will make fairly linear progress, that's how the 'expected progress' charts are drawn up in the first place. But please don't assume that that's it.

On a side note, a family member has been the butt of our jokes, in the nicest possible way, because despite having all the advantages one could imagine - both parents high flying lawyers, both parents privately educated, private nursery, nanny etc - he barely said a word til he was 4, other than 'yes' 'no' 'want' and 'more'. It happens to anyone.

I have a lot of experience in working with children and while I know that not everyone can exceed, I truly believe that children can learn and adapt at different ages or stages. If it's outside the 'norm' they may need a bit more help because the standard education system doesn't fit for that. But even then, the older you get the the more that sheer hard work and tenacity come into play. I know a fair few adults who didn't do well at school and would be the first to admit that they're 'not academic' who have got few qualifications in school but who have become mature students as adults.

You sound like you're really supportive, and doing everything you can, so please don't worry.

My twins were prem and in special care for a month. One developed normally, met milestones as expected. The other was way behind and the other twin covered for him with twin speak. But he just did things when ready and did them well. Walked at 18months never crawled or had falls, did speak much until 3yrs old then in full sentences !! He is now well above where he should be academically. Hope this helps a bit.

My Ds1 had real issues with speech and language development, had grommets fitted for glue ear, and was still under speech therapy until nearly six. He’s now a bright 17 year old, with a good part time job, and planning to go to uni to study law next year.

A year ago my son has his health check at 28 months and he scored zero for everything on the questionnaire - I was expecting it to a certain extent as I could see he was developmentally behind his peers.
He is still behind his peers but is making progress (he was non verbal last year and now says any word although just single words and not sentences- he was 3 in June) and the paediatricians he has seen have said he has asd traits but they’re not sure if it is just development delays.
The positive thing OP is that you will have access to all the early interventions we have had - SALT, the CAD team, paediatrician assessments plus we got him a place on a PECS course. He is also at nursery which I think has helped a lot.
Sounds like you have been doing everything you can, good luck.

I was speech delayed, and didn't learn to walk until I was 3. I was sent to a playgroup for children with special needs!

I'm 35 now, a primary school teacher with various post-graduate qualifications, and 5 years ago I did the marathon. :)

Try not to worry until you really have to. :) xx

Not twins, and not premies but my 2 girls are like chalk and cheese one hit every milestone early ( oldest ) the other well we are not sure if she can't or won't but it's just not happening. We have a little way to go until the 2 year check but remember it's not pass or fail it's a tool to help you identify what areas we need to help prioritize as parents. If your kids are happy and healthy your doing great. ( Really great I don't know how the hell anyone copes with twins, huge respect from me there)

mine 'failed' (but HV said they all catch up anyways so no need to do anything) and eventually was dx with autism and learning difficulties.

I would speak to the GP to get a referral for a paed in place. They may need a extra help and support in different areas or they may not but a HV questionnaire won't differentiate between the 'failed' children who catch up on their own and those that won't. You need a paed for that and possibly salt and/or OT/physio too.