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?

My son also had his hearing and eyes tested to rule that out

I don’t think much at this age to be fair, except potentially speech therapy but like you said that may not be of a concern until later on.
it was more I guess to start the ball rolling, knowing that diagnosis can take years and she will be starting school in 18 months (August birthday and they don’t want to defer for a year)

quieter places do work better and I have been suggesting these more often. It can make a difference some days, other days she will still be very unhappy and upset over seemingly nothing ( I know there obviously will be something but no obvious sign)

She does go to Nursery, and they haven’t mentioned anything which I do find strange as it is quite obvious to me (and my partner).
Ive discussed the late walking, no communication, sensitivity to places and sounds etc but there is more.
fixation on certain objects, no imaginative play, no playing with others, she will tense her entire body when being changed or lying down, tenses her entire body and flaps her arms very regularly, rocks side to side when standing etc, never has had a solid poo (research has been showing a potential link between gastrointestinal issues and autism?) plus more.

I called the HV when my daughter was 22 months old. Expressed my concerns.

• walking on top toes
• No eye contact/ actively avoiding it all costs
• no interaction with parents or anyone actually
• no speech
• hand flapping
• constant spinning on the spot
• only wanted to play alone
• eating bland beige food
• No affection towards family
• lived in her own little world

tbey sent a HV out within the week to visit us at home, from there the HV said she could see definite signs that something wasn't quite right and put in a referral for an asd assesment, it took 2 years of assessments and therapies but she was diagnosed with autism exactly two years to the date of that first HV visit.

2 isn't too young to express concerns, if there's enough there. They might just start the process. We were lucky. Because we saught help so early on, she went to school this September with a diagnosis an EHCP and she has a specialist school place. None of that would be the case if we hadn't noticed so early, and I can't imagine how she'd be doing at school now without the support she has

As others are saying 2 is not too young, and is actually an ideal age to get the ball rolling especially is there are obvious signs of delay, and possible autism. My son is on track to be diagnosed whilst still 3, and we are aiming to apply for an EHCP before he would start reception. We might even look at deferring him a year even though he’s September born. She’s a summer born, which is delayed they would be in with a very good chance of deferring her a year. That all being said, some autistic children can progress very quickly after turning 3.

Agree with pp that the parents do have to come to the conclusion by themselves. I would also agree that they probably already know in their heads. The two year check and nursery will between them most likely flush out some concerns.

And yes waiting lists are long but they have some time yet. You don't need a diagnosis to get an ehcp if extra support is needed at school.

It sounds like you are doing a lot of research OP, but if it's purely in relation to your DN I think you should take a step back.

Do you think it's possible they don't want to talk to you about it, precisely because of what you have said: your children were born 3 weeks apart and are not progressing the same? If their child is at nursery things will have been noticed. They maybe just don't wish to discuss this with you.

Yes I think that’s right.

I do a lot of research yes, not directly for DN but just in general for my own DS aswell - I like to be on top of these things and catch them early if anything should arise.

I have a child who didn't develop normally. I knew. I dealt with it without broadcasting to the wider family at that stage. I really wouldn't have appreciated having family member butt in with their concerns and their 'expertise'. Not you place. Mind your own business.

Of course this is always a potential, it would be a little saddening they don’t feel comfortable to talk to me given how close and supportive we all are of each-other but I can maybe see what it would be uncomfortable yes

You would think. I know someone personally who is just so oblivious to something obvious to everyone and everyone. I'm close enough to them for them to tell me. It's the same thing though, they baby the child and really seem out of touch as to how much they do this. Shocking thing is the mum is a doctor and dad in the medical field, yet completely can't see what's happening in front of them. I just choose to stay out of it.

@28andgreat it's completely different, but when I had health issues I didn't want to discus with friends / family who were googling things and trying to make helpful comments. It made me feel worse. So I would be careful not to ruin your close relationship on your assumptions.

To those saying ‘they will know’ - you potentially are 100% correct and they have an inclination that they haven’t shared with me.

From my knowledge of them and our relationship- it really does not seem like they have any concerns. They have mentioned how forward my DS is (I don’t think he is forward per se, just hitting his milestones) and sort of joke that DN needs to hurry up and catch up. But at 2.5 years old there is a vast difference in almost everything they do - with my DS deemed ‘very bright’ and DN deemed ‘a little slower to the mark’ which I don’t think is correct in either way.

I totally see that HV should see this little girl and they do start to flag up services but not much happens until 3. I’m quite surprised nursery is saying she’s ok but of course they could be saying the opposite! You don’t know.

Im well aware some dc go straight to special school but the majority don’t. Mostly parents get advice on speech and parenting. There used to be early nursery places made available and then a decision made when the ECHP was completed about appropriate schools. However parents have to work with others to kick start all of this. It’s not for the aunt to do.

Thanks all, honestly your comments are very helpful.

I know it would be over stepping a mark so I won’t be discussing, maybe just supporting DN by suggestion some quieter play dates and places etc so she feels more comfortable.

i really do adore my DN and I just want the best for her, but I agree I need to let her parents decide. It’s just so hard when you love them so much and you just want the best!

I know a girl who's son was at nursery for just a week and was called in for a meeting and told that they had concerns about his development. He's now on the asd pathway, any decent nursery would surely realise? And perhaps they have and like you've said maybe they just want to keep it to themselves for now, it's a really big deal and can be quite upsetting for the parents to hear

I'm a professional working in an NHS paediatric team. I do not comment on my friends children's behaviour/ development unless they ask me directly. One good friend did ask me and I gave my view, signposted to the correct pathways and the dc did get a diagnosis of global developmental delay. Another friend never raised her sons development with me, like your experience she seemed a bit oblivious (he's just lazy etc), now that he's started school it's been picked up and my friend was shocked. I don't see it as my place to comment unless asked or in a professional capacity.

In your position, and given that you’re close to the parents, I’d focus first on the covering ears.

Next time you are somewhere overwhelming I’d say to them “I might be overstepping but have you ever had her ears tested? She keeps covering her ears today and I’m wondering if she feels a bit uncomfortable?”

Ear tests are a pretty standard first step for kids with speech problems or autism so you’re helping getting things moving. But it’s a much much easier question to ask than starting a conversation about autism.

Plus, if she’s already thought about autism then she might well raise it with you in response ….

Thank you - I might do this, as it’s quite an obvious one and if she does have an underlying ear infection then sorting it sooner would be better!

I’ll gauge the room at the time and see if it would be appropriate

Agree it's very difficult. We have been trying for three and a half years to alert DGS's DPs to his very obvious issues and have been stonewalled throughout.

They appear to be completely oblivious, so all we can do is wait and hope that some agency (school now) will join the dots and he will get the help he needs.

Yes I was like this I down played my sons delays and I had an older, child ,I just found itcvery difficult in the early days, it must ve quite difficult for them to see your son reaching his milestones,when their daughter is no where near meeting them ,obviously that's nobodies fault but I remember comparing my son alot
As they come to accept things ,things will get easier for them to deal with.

Thank you for this, I can imagine it was very hard for you and potentially them if they feel this is the case.

We (me especially) have always tried hard not to compare openly as I think it is a recipe for disaster but it’s quite an elephant in the room with wider family when they are clearly so very different.

It's hard not to when it's very obviousI ,there will come a point when they hace to acknowledge there is something and will have to accept it ,just be there for them when they do .

Whatever you do, OP if your DN is eventually identified as having SEN don't let on to her parents that you suspected this was the case.
When my DD was diagnosed with Autism and we told PIL, MIL turned to FIL and said "well, we've always had our suspicions haven't we?" in a tone that was oddly smug and self-congratulatory.
I cannot tell you how utterly shit it made us feel as parents knowing they'd been discussing my child's difficulties behind our backs for years.

@neverbeenskiing But they could not discuss it with you, could they? That’s the problem here. Damned if you do and damned if you don’t. They chose not to mention anything but had suspicions - everyone encountering DC who aren’t progressing wonder what’s wrong.

I'd do something like this, rather than nothing, keeping it light and gauging the response.

Main reason being that the waits for SALT (and presumably other services) are so long at the moment. The great thing about speech, for example, is that the referral can be made and if she catches up in the meantime then she can just refuse the appointment when it comes up. I'd say something like that. I think a hearing test would come up a lot quicker.