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’ 😂)

[HomeEdRocks18]

My son was premature, traumatic birth at 32 weeks. He weighed 4lb half an ounce.
He's now 16, 6ft tall and has caught up with his peers.
Those assessments are a load of crap. They are based on an 'average two year old child'. We all know that there is no such thing as all children are different.
My son had speech and language troubles when he was three so saw a therapist. He still mumbles now, but we can understand him. He's very bright and gained two grade 4 gcse's in maths and English (grade C's).

[BillHadersNewWife]

Great news about their problem solving skills OP! I just wanted to say, my nephew was behind in literally everything. His speech took the longest to "come in" and by 5 he was still behind his peers.

He's 28 now and manages a large theatre. He just gradually caught up...by age 8 or so, he was the same as his peers in everything and ahead in sports.

[HuloBeraal]

Well done to your twins (I am the mum from above with a 26 weeker). And fingers crossed that the SALT comes through soon.

[NaviSprite]

Just thought I'd update following the HV's assessment, in case anybody is bothered (I feel weird updating after a while because I feel it's arrogant to assume anybody wants to know! )

As expected both are behind on gross motor skills but they have made sufficient improvement since their 1 year assessment that the HV and Hospital Paediatrician are comfortable giving them a bit longer to start walking and then retaking the gross motor skills section of the assessment in December (when their next Hospital appointment is due).

DD is slightly behind on language and DS is very behind, HV was going to ask me to wait for this area to develop too but I insisted that we at least get a SALT consultation in the meantime, just awaiting their appointment as the SALT centre in our area is apparently a very busy one!

I'm not feeling as disheartened after reading the experiences of everybody on this thread, some really good advice as well as heartening stories.

What I am absolutely amazed at and extremely proud of my twins for, is that they are considered to be in the advanced category for problem solving skills and fine motor skills! I'm sure this will read as a brag and I'm sorry if it does, but I am so over the moon for them as I was expecting to be behind in ALL areas .

We're awaiting a visit from the local portage (two weeks today) to gauge their opinion on how to proceed on all fronts, but I just wanted to come back and thank you all for getting me through my worries.

[SinkGirl]

I’m so glad you’ve contacted Portage - they have been invaluable to us. If we hadn’t started with them when we did I think we might still be sat here having no clue what to do to help them.

This really jumped out at me
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.

This was very like us. DT2 in particular lost any interest in play. He has been sitting playing with complicated shape sorters one day and then the next wouldn’t touch a toy. He would just run up and down the room and spin all day long. DT1 was much more subtle and he would still play with toys but gradually retreated until he wouldn’t acknowledge anyone.

Our first task with portage was trying to get DT2 to post a ball into a big tube. Took us three weeks to get him doing it. This week he’s been sitting and engaging with the same toy for long periods, bringing toys over to ask me to play with him, bringing me his favourite book and touching my mouth to get me to read it - small steps but huge for him.

Once I contacted portage they came out to do a home assessment within a week or two. They spent ages with us talking everything through. They did a thorough EYFS assessment, the written report of which helped us to get DLA. We did have to wait a few months for visits to start but they gave us some ideas of things to try in the meantime. They are really fantastic and will help you to access the other support you need - we’d started for DT2 when we realised DT1 was also struggling and they got us quick referrals in place. I can’t praise them enough and I’m sure they’ll be able to help.

Hang in there. It’s so tough having twins this age as it is. The not knowing what was wrong, if anything was wrong, what to do about it etc absolutely broke me at the time - now I’m on the other side of that stage I can tell you that you’re doing all the right things.

If you can stretch to the More Than Words book please do - I found it was cheapest from Winslow Resources but you may be able to find a second hand copy if you search. It’s helped me so much I’ve recommended it to other twin parents who are speech delayed but not autistic and they’ve found it so useful too.

It’s a great sign that they interact with each other and I’m sure nursery would help them too, so i would definitely look into that.

[ShiftHappens]

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.

[Slightlysurviving]

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)

[zingally]

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

[Clickncollect]

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.

[ColdTattyWaitingForSummer]

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.

[hp2]

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.

[Bored40]

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.

[thatguiltyfeeling]

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

[Jinxed2]

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

[Waterdropsdown]

@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.

[spottysept]

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]

@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.

[museumum]

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.

[NaviSprite]

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 😊

[Harrysmummy246]

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

[OhTheRoses]

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

[ZogorElmer]

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.

[NaviSprite]

@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 😁

[Ukholidaysaregreat]

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]

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.