To discuss potential SEN concerns with family member?

[28andgreat]

I have a dear family member that I am very very close with, our children were born 3 weeks apart and have grew up together. We both view each others child as one of our own and it’s such a lovely close knit family feel.

To get to the point - it’s quite clear both children are not progressing the same way (which is normal, I know) but DN is showing signs that I personally think would be Atleast enough at this stage to be speaking with the health visitor. DN’s parents have made one or two hints towards thinking their progression is slow, but still view DN as a baby and seem to be oblivious to the other signs. (She is 2.5 years old).

I want to clear, I absolutely adore DN and want nothing but the best for her. She is so funny, caring and unique - she truly is a treasure. But I also want her to have the best life possible, and that could mean having extra support from an early age.

I really don’t want to damage my relationship with family member, but I’m finding myself getting frustrated that they appear to be burying their heads in the sand. Is there realistically anything I can do or am I blurring the lines?

DN hasn’t had her 2 year review with the HV yet (it’s very slow round here) but imagine it will come soon, I’m leaning towards waiting for this and seeing if anything said - but I don’t know if family member will actually raise any concerns.

has anyone ever had to have this conversation and how did it turn out?

She really needs a hearing test (via GP) and SALT referal (often self referal). Can you invite an friend of a friend who whose child has just had done the same thing to drop into conversation.

Could also be glue ear. It can cause ear infections and speach delay because child’s hearing is poor.

You've missed my point. They didn't need to say anything at all. We knew our DC had additional needs. It wouldn't have been their place to tell us before the diagnosis that they thought there was something wrong, but they also shouldn't have told us after the diagnosis that they'd been discussing it behind our backs for years. There was no need.

Hmm it's a difficult one to answer. I knew with my children bit everyone else dismissed me. I'd have found it so helpful if someone had said they saw it too.

I'd leave it for either the health visitor or nursery/school to pick up on things. And if she does have SEN then they will and they can have the conversations with parents. It doesn't matter if there's no diagnosis before school as long as the primary school is nurturing and understanding of SEN.

Sounds like one of my children. Turned out he had glue ear. Was sorted with grommets and some speech therapy. Balance is often linked with ear issues. HV should pick this up if this is the case.

@neverbeenskiing So you expect people to not talk about something that worries them? That is unrealistic. Concerned people talk about what concerns them. We’ve been talking about a friend who clearly has dementia plus Parkinson’s. We have now said we have been worried but that’s after 5 years of silence by the couple concerned and we didnt want to upset anyone. When you see a serious issue playing out in front of you, it’s a massive dilemma but you cannot stop people being concerned. It’s inevitable.

People don’t feel they can help if it’s hidden and denied. This health issue has been evident for 5 years. We shut up for most of that time and there’s still no official diagnosis! Doesn’t make it any less worrying though and the deterioration is very very concerning with no help in place . I think you have to accept its human nature to have concerns, and discuss them, but dodge confrontation. It’s a relief when the affected people do open up to be honest, even if the news is devastating.

Hi OP

Your DN sounds exactly like my DD at 2.5 years. I had concerns from the beginning with her but I brushed it under the carpet and tried to excuse all of her little quirks. Her early years were a very worrying time for me.

Her parents will definitely have concerns and probably trying to brush it off or hope she’s just immature or shy and her development will catch up (I know I did with DD.) It wasn’t until DD turned 4 and started preschool and I noticed how vastly different she was from the other children that something clicked with me and I finally accepted DD has SEN and from the is moment I made it my mission to fight for her and ensure she has as much support in place as possible. She was diagnosed with autism when she was 5 and I had her statemented (NI) to ensure she has the best support she can get in school.

It’s great that you’re such an involved auntie but I say kindly that even if you think her parents don’t have concerns they will and it will be picked up by the HV or in an educational setting. It is very very difficult to accept that your child has lifelong SEN and we do our best to hope and pray that they catch up with their peers, I think voicing concerns with the parents will not go down too well, I’m not sure how I would have responded if someone told me they had concerns about my DD when she was little.

Not true at all.

My daughter had already been referred to the Paediatrician by our GP for an initial assessment. She was also receiving Speech & Language therapy all prior to the two year assessment. You can do a lot before the two year review

Ours started at 22 months and we still struggled to get her a sen placement at school, we got there in the end but it did have me wondering if you have to start the assesment at birth to be in with a chance at one point. The LA's favourite phrase was "they are full unfortunately"

Around here you would not get into SALT before 2. Most would be 2.5 or 3. Usually nursery is given a try and progress monitored.

I’m not sure if you’ve quoted the incorrect poster as I don’t see what your comment has to do with mine? I was just talking on the point of ‘there’s nothing that you can do before the review which is better than the review’ as that isn’t true.

Requesting an ECHNA, being issued an EHCP and having a SEN placement named is a completely different ball game

My DS was referred for NHS SaLT at 3 (standard in our area) and didn't actually get any therapy until he was nearly 5 😞

Thing is, so many kids do grow out of xyz. And for every person expressing concern, there will 10 people saying 'oh my child wasn't toilet trained til they were 20 and he's doing fine'. Just be there for her. It could be a lonely time of life for her

Not your place, be there when they need support. It will become apparent soon enough but saying it doesn’t change it. They could be going through some grieving around coming to terms with the issues. Let a professional say it.

Not really your place and tbh, walking at 20 months, but she is walking. Coordination problems are very common with lots of kids at 2.5 many grow out of them others may need some help. Speech, I have known a fair few children who do not have SEN not talk until after 3. I imagine if the parents are concerned they are holding on a little longer and I would say this is the right thing to do.

Do any of the children go to nursery? They usually puck up on these things.

Pick not puck.

1. They probably are fully aware of the problems.
2. Early intervention means little at that age. There is very little direct support especially if you are thinking asd.
3. Most children are not diagnosed until 3 years old.
4. They need time to adjust and to decide what to do.

I knew from when my daughter was about 6months old that something wasn't 'right' and everyone told me I was silly. My daughter saw SALT from 2years old.

We had to build up years of 'evidence' and COVID delayed a lot of our appointments but she was diagnosed age 5 with autism and learning difficulties.

I would have actually loved for someone to talk to me about their concerns regarding my daughter.

In my opinion, the earlier you start getting help the better.
No point being in denial, better to accept it and get help which either rules something out or confirms it.

Sometimes you have to put your feelings aside.

Early intervention helps.

Hmmmm this is a tricky one. My son has a speech delay and it really belled me off when SIL said loadedly "are you worried about his speech? Should you get it looked at?" as of course I was. It was obviously very well meant but I just hated that clearly it had all been discussed as though I was oblivious. So they might be clueless or they might have worries but are making light of it. Parents obviously feel very protective in these circumstances.

That said I knew a bit more about child development maybe and was super proactive/ lucky and got on the waitlist at 2, grommits privately at 5 and him seeing an NHS SALT before three.

I'd steer clear of any armchair diagnosis. It could be glue ear. It could be late speech and nothing else. They need to go through tests and listen to professionals who know that age group before they get anywhere near to labelling anything. 2.5 is so young it's still hard to know really.

Although I'm surprised nursery haven't mentioned anything as ours were really hot on it.

Also in the nicest possible way if your sample size is just DN and DS then maybe you are comparing your very able child to a less able child who is still within the wide range of children without significant needs? Hard to know without actually knowing them.

So hard one. You sound like you have the best of intentions. I'd casually mention a hearing test as that would be the first port of call anyway.

I've been in a similar situation to this and I do understand why you're frustrated, but try coming from a place of empathy instead. If you're right, chances are they're at the beginning of a very long and difficult road of grieving for the child they thought they'd have and learning how to best do what they need to do for the child they do have - which lets be honest with the way waiting lists and budgets are at the moment is akin to going in to battle. Being a sen parent is a bloody fight at times just to work out what your kid needs and then to actually get it. It's no surprise at all that this journey can sometimes start with a bit of denial or watching and waiting.

I'm not sure if I did it the right way with my relative but I just loved the kid as he was and when his parents started mentioning concerns, I'd just say well it wouldn't do any harm to get it checked out.

Also I'd be very surprised if nursery haven't picked up on anything. They may be waiting on the early years hint or the health visitor to come and see what they think.

My elder child didn't develope as expected and that age was tough as that is when you really start to see the differences from peers.

Ie why does their child play nicely and talk but my child can't?

My child started speech therapy at 3 before then it's too early but what you could do is mention gently your concerns on that part.

Thst is part that you can also suggest that you could help too. I was overwhelmed and felt like it was my fault my child was speaking. So did welcome help from others with my son's speech therapy,, most is centered on play. Tea parties, adding people into the game.

One of the most simplest things I learned from speech therapy - keep language simple. Short sentences and model words for her to learn. I also compare it to learning a foreign language for a toddler learning to speak.

It's not always just SEN that might mean a child is developing slowly, for example on my daughters induction day for school (she goes to a sen provision within a mainstream school) the teacher was talking about reading and these parents raised their hands and asked if they had more advanced books because their son could read from the age of 2. It made me feel a bit shit because my daughter can't even talk let alone read. Anyway fast forward to last week, I'm waiting for my daughter to come out, and I over hear the teacher tell the same parent that her son had 3 wet nappies that day, so he could read at 2 but wasn't potty trained at 4/5

My daughter is autistic, can't speak, dosnt follow instructions. Has missed all milestone since she was 18 months old but she's been potty trained for a year.

We had a similar situation with the little girl we nanny shared with. It was very obvious that she had significant issues but her parents were in denial. They also kept saying how advanced our DD was and would actually lie about what their child could do.

It was different in that we weren’t close to the parents - we only met them as we both needed a nanny at the same time - but we were concerned as their child’s issues were starting to impact ours (eg she didn’t like noisy places with other children, so the nanny couldn’t take our DD to soft play or toddler groups either). In the end we just said the arrangement wasn’t working as they were very different.

Of course their child’s issues became more and more obvious and were picked up by preschool, autism diagnosis not long after. The kids are now in year 3 at the same school and their DD has an ECHP and has had 1-1 support since reception. The parents are massive advocates for their DD. I think with a first child especially it’s not always immediately clear what is normal/within normal range, and also what everyone else has said about needing time to accept the child you’ve got.

I highly doubt your DN would miss out on “early intervention” between now and being reviewed by the HV. You just need to focus on being a support system for your relatives, as they will need that. Listen and take them where they’re at - don’t push your views or your research.