DH doesn't want to pursue a diagnosis for DD, WWYD?

[FluffyPolarBear]

DD is 2years 5 months, has a global developmental delay, speech delay caused by glue ear, squinted eye, chest problems and a hip dysplasia (yes I've spoken about her before).

She's a very likable child manages fine in a Private Day Nursery, but attends a lot of appointments.

Finally saw DDs paediatrician at the Child Development Centre for the first time yesterday (23rd) and after a long talk about her, her life, her referrals and her medical history, they weighed her, measured her height and observed her for awhile.

Paediatrician has suggested we start genetics testing to rule out and underlying cause, he says he can't be 100% sure but usually when he sees a child he can usually put a diagnosis on them before the tests are conducted. I didn't ask the suspected diagnosis as I will only drive myself mad googling until the follow up appointment in the new year, but I liked him, I trust that he knows what he's talking about, and I've felt for a while (since she was maybe 6 months old) that she has an underlying condition causing all her other conditions.

I posted on chat a few days ago about DH not liking any of DDs photos from Nursery and during a chat DH said he doesn't want to go ahead with the testing. He says it's not fair to put such a small child through so much testing (initially just a blood test, a urine sample and a stool sample hardly like it's an MRI under General) as she's already had several tests conducted by different departments, it means missing Nursery time which we're paying for and I will possibly need a day off work to take her to the clinic for the tests.

When I dug deeper he said that a diagnosis isn't going to change anything, she'll still be our DD and we'll love her anyway, it won't change the way he or I treat her because we've always treated her this way. He asked me why we needed to know at all?

When I pointed out that this time next year we'll be applying for a school place for her, and we need to know so we can have the right support in place when she starts Reception in September 2019 he said that I'm underestimating her, and she may have caught up by then.

He's refusing to sign the consent forms for the testing, he doesn't really need to as it only requires one parental signature but I feel bad going behind his back about it.

I think, despite what he says, he's struggling to accept DD and that the future for her may look very different to the one we talked about/dreamed about during my pregnancy.

I need to know though, I want to put the support in place for her, get EHCPs if she needs it, get her on any medication she might need.

We need to get the ball rolling and sign the forms by Monday or the test results won't be back in time for our appointment in January, and delaying until Januarys appointment just means I'm worrying and we still don't have answers.

WWYD?

Dd had genetic testing. The consultant had a specialist Hv with her again to offer support. There will be specialist staff hopefully you can access.

get it done anyway. You can't medically neglect your child on the grounds that the results might hurt your husband's feelings

However, as someone who was once an undiagnosed but clearly ill child, not having a reason for back of better wording just made me blame myself and made it quite a lot easier for others to blame me for not meeting standards and expectations. I felt I was just weak, stupid, alienish, failure even when I made progress I could see it was in ways that were not what others were doing. Kids notice these things. Having words others know and reasons made a world of difference to me. I still get fed up with it sometimes and I do not think it would have stopped certain horrible adults when I was a kid, but I'm a big supporter of having as much information about our bodies as possible and for kids to get that information in age appropriate terms.

This is a very good point. I was always physically weak with many minor illnesses, always rubbish at sport etc, and never quite fitted in emotionally. I have food and sensory issues. I have had depression on and off all my life. I react differently to my peers - in fact I'm about to have an adult autism assessment, on the back of my genetic test results. My therapist believes that my depression and mental health issues might have been ameliorated if we had known there was a reason for my differences, instead of me just thinking I was inferior in some ways. I was very successful academically and I think that masked a lot of my issues and meant I wasn't given the support that might hav helped. DS will have that support.

I think you should be understanding of the way your DH feels but go ahead anyway. It isn't about him, though his feelings are very common. I don't think it's about him saving face and having a big ego as some have suggested, I think he's in denial and wants his daughter to have an smooth easy happy life. He just needs to understand that getting an diagnosis will actually help her achieve this.

Apologies for the typos, I'm using my iPad and autocorrect is basically making some of my posts into gibberish.

It won't change how you both treat her but it may change her future treatment. Why drag his heels with this if there is more support out there for her potentially to allow her to fulfil her life to a fuller potential I'd want to know.

My oh has Asperger and was diagnosed as an adult and it caused him to struggle a lot as a child and teen and he does now harbour some resentment towards his parents that turned a blind eye to his obvious wee nuances. He feels had he known that his differences were there for a reason he could apply some logical thinking but instead he was left feeling frustrated and confused.

Yanbu . I didn’t go for genetic testing with my son (5 years ago) due to family pressure. And I wish I had. He has autism, very unusual features (think mini Mick jagger). We also have a family history of autism but his autism isn’t like the family autism traits. I have probably worn google out by typing in symptoms!
You may have to be the default parent on this.

Teacher: "So we think your DD needs extra support at school. What is her diagnosis?"

Your DH: "Dunno, I couldn't be bothered finding out."

While I sympathise, DC1 has additional needs which my DH denied were an issue for years until we had a spectacular crisis. At our first session with the EP, we went through a questionnaire and at every answer the EP described how our child differed from a child without his condition. DH didn't see it until then, and still hasn't told his family, but he has accepted it and changed his attitude towards it.

It was clear from your photo thread that he’s in denial. It’s understandable, but ultimately selfish. He currently doesn’t accept her as she is, not wanting her recent photos is a clear indication of that, he’s still hoping she’ll ‘catch up’ (miraculously suddenly become the child he dreamt of having. Also understandable, but not helpful).

As almost everyone else has said, you need to put DD first & get the tests done. You need to know what you’re dealing with, in order to get HER the best help available. This isn’t about how you & he treat her, it’s about making sure there aren’t things currently undiagnosed that she could be getting treatment for & about getting her ‘into the system’ for help at school etc.

Explain to him, best you can, why you will be getting the testing done but don’t exhaust yourself doing so. You need to put your energy into DD & looking after yourself. He’s a grown man, he will ‘catch up’ eventually if he really does love you both. If he doesn’t, then he would never have been putting DD first, testing or not.

IF you genuinely think he would try to stop it happening, then don’t tell him. That might sound underhand, but DD comes way above his feelings & I wouldn’t risk having to go through the courts etc & testing being massively delayed due to his inability to face up to reality.

Diagnosis has made an enormous difference to my child. Not in getting DLA but in accessing the right support for him in school. Apart from anything else, it's given me the vocabulary to ask for the things that he needs to support him.

Your husband needs to grieve for the child he thought he was getting and accept the child he actually has. Your daughter has the right to access the right support to meet her needs.

Your dh is being a selfish twat. This is about your dd and not him.

Gosh. YADNBU

Teacher: "So we think your DD needs extra support at school. What is her diagnosis?"

Your DH: "Dunno, I couldn't be bothered finding out."

it does not work like this. A genetic dx is often more the underlying cause of another diagnosis. DD has a dx of autism, learning difficulties and s&l impairment. She gets support based on her needs relating to the above mentioned diagnosis.

we also have a genetic dx which is merely seen as the underlying cause of her autism. Her genetic dx alone gets us nothing. And OPs DD already has a dx of developmental delay among other things. so she has a diagnosis.

IMO people who don't want a diagnosis for their children often also say they don't want to 'put a label' on their child. These people are pretty much always deeply prejudiced against disability and people with disabilities.

I say this as someone with a profound disability that was not diagnosed until teenage years, and who has a lot of experience of people's attitude to disability. I understand why and how these attitudes have developed but I also feel very sad for those who bear the brunt of them - especially children denied the support that would enable them to achieve and develop.

In your place, I would carry out the tests without my DH's consent, even if it resulted in the breakdown of our relationship. But I have very strong feelings on this!

coffee not necessarily. My sons genetic issues are probably the cause of his other issues, which are so far quite minor. We've been told it will be helpful to be able to point to his diagnosis if we have trouble getting support as otherwise they may dismiss his issues

Sorry that was brief. OP go on the Special Needs boards. there are many wise people on there - some who don't frequent these boards. You will see multiple stories of parents of children with lots of different conditions where the same narrative happens. To be quite honest - the ones that play out (like my own story) where the DH isn't on board, but then sees the benefits and gets with the program are much much happier than the ones with refusal to engage with a very real problem. To put it bluntly there are a lot of broken families around with the kids stuck in between, and lots of mums on their own with disabled kids for this reason.

The best thing you can do is find a way to make him see - whether by visiting the GP together (after you have briefed GP that you want to explain why DD needs diagnosis) or by showing him one of the threads on Special Needs where it is resolved for the better (I will have a look - it might be better not your own thread).

She will be facing the world on her own very soon at school and needs you both on side. IME dads find it very very difficult to see problems in ther DCs and for both parents the instinct is to minimise problems (of course it is - you love your child). until faced with a real challenge liek school not supporting needs.

best of luck

I worked as an SEN Officer writing EHCPs etc. It is your daughter's needs and not a diagnosis which matter for securing support/funding.

YANBU but I have chosen not to pursue a diagnosis of autism for my daughter so I understand your husband's point of view too.

You have to do it for your DD. If you get a diagnosis, she won’t be magically cured, but at least you’ll know what you’re facing and will have taken the first step along the road. If the tests turn up nothing then you’ll just be in the same position you are in now. She’ll still have the developmental delay. It goes without saying that you’ll love her whatever - you’ll probably love her even more.

I think this issue is so sad. What’s at the heart of this is denial, embarrassment and the knowledge that your perfect offspring might not be (clinically) “perfect”. There is no shame in diagnosis. No stigma to being assessed. At least there ought not to be.

We had a neighbour whose son had what to many, were quite obvious “differences”. Both parents were in total denial and he went through education as the naughty boy; always at the back of the class mucking about, limited attention span low self esteem. As an adult he was diagnosed with adhd and dyslexia. He is a very unhappy young man now who works sporadically and should have had more help.

Your DH is scared. That's OK, every parent faced with tests and diagnoses is scared. Not dealing with his fear and letting it affect your DD is not OK though. He should speak to your GP or a counselor or a friend or do whatever necessary to find the courage to do what is best for your child.

I say this as someone who had to put her D.C. through horrific tests (full body x rays, scintigraphy, MRI, CT scan, endless blood tests and genetic testing - just typing it makes me feel faint, I think DH and I have PTSD from the emergency admissions, crazy testing and horrific diagnoses) to get to a rare bone disease diagnosis.

Diagnosis bloody well IS going to change anything - it changes whether DD gets support at school from the get-go, because it's known she has X condition and these are the symptoms, or she just gets left to struggle on because "she might catch up, you must let her develop at her own rate" which so many DC have to.

I understand your dh. I don't agree with him, but it's easy to say that when you're not in the situation.

He's scared. What if it's genetic? What if it turns out to be him, he did it? He's scared both that it's "his fault" and possibly that you'll blame him too. Or maybe that if it's "your fault" he will struggle not to blame you.
He's hoping she'll grow out of it because the other is something he doesn't want to face. if you get a diagnosis he may be told she won't grow out of it, may even be told things get worse. If he's not told that in black and white he can keep pretending that she'll be fine in a few years.

And then he's grieving. He's grieving for the hopes he had, and the daughter he thought he would have. He's got to come through that before he can accept her for all she is. But at the moment it's easier to bury that grief, and hide it pretending it's not happening, that he won't have to go through it.

I'm sure you're feeling that way too.

But for your dd's sake you have to go through it. Because if you get a diagnosis you can work with it for the best possible outcome. You may be able to meet other parents-that's invaluable support. Maybe they'll be grants you can access for help etc.
And most of all, once you have the diagnosis, you can start moving forward. Yes, it will be painful, but in the long run it's better. It's just delaying the inevitable, with the added issues that you may have made things worse by not doing things sooner.

I've been there is a more minor way.
It didn't feel minor when they told me my dd was missing her arm on the scan. I remember the silence at the other end of the telephone when I told the consultant (who was doing the best she could for us) that it might be a mistake on the scan. I kind of knew in my heart it couldn't be (her arm stops half way between elbow and wrist), but that was how I coped at that point.
I kept thinking of things I'd done-had her arm snapped off when I'd tripped that time, that bus I'd gone on when we were ttc was ever so bumpy, was the paracetamol I'd taken at 6 weeks to blame...

We were lucky. In her case it was just her arm failed to develop. There are conditions which are much worse connected with it. They're rare-but we had to wait until birth to find out if she was further effected.

But also, if she doesn't get a diagnosis and grows out of it, you haven't lost anything by having her tested now. But you may lose valuable time if you leave it.

Having done invasive tests with a couple of my dc, it's much easier when they're young. At 7 or 8yo, you need to tell them a little bit more about the tests. They anticipate it's going to hurt. They get scared.
At not yet 3yo, you can actually make it exciting. Ds thought the fact the doctors were going to look at his blood terribly exciting. In fact the only thing he didn't like about it was they wouldn't let him come and help!
If I think of when he has had grommet operations at 20months, 3.6yo, 6.6 yo it's got progressively harder on him.
At 20 months, he just accepted what was happening, didn't ask for food, or worry or anything. Was upset when he came to, but fine. At 3.6yo he marched in and said "mummy is trying to starve me to death, she won't feed me", and got upset about the cannula when he came to and kept trying to pull it out.
At 6.6yo he was visibly scared and shaking when we went into he hospital. They had to sit him down and talk him through. And when he came to he was terribly teary.

Feel free to show this to your dh. But what I'd like to say to him is:
It's hard when you don't know. Waiting to find out is probably the hardest time. Finding out there is something wrong shatters your world. But then you can start to grieve, start to rebuild your world. And gradually things change. Your ideas and your hopes change. And the world starts spinning again. You can start to think about the future. There's still difficult times-the times dd2 has said "I don't want to be different" and when people have said some pretty nasty stuff to her. But unless you find out, you're stuck at the beginning. You can't move forward. And most important of all: you can't help your child in the best way because you don't have the knowledge to help.
You will cry during the process. You will think you don't want to be there. You'll be angry-at the medical staff, at each other, and at other parents.
But if there is something that does need picking up, not doing it just postpones it. And the longer you're stuck in the don't know zone, the harder it is to go through it.

BalloonSlayer you’re SPOT ON there!

As a parent with an autistic son who has a diagnosed and an EHCP I can say that it’s been absolutely imperative in getting the help rather than just talking about it and seeing “how things go”.

Education is so financially strapped now. I think there’ll be a crisis in managing sen in the future. Our secondary school sends home pleas for cash every other week.

I think it would be a good idea if you got some counselling together (the hospital may have a service or may be able to point you towards an appropriate counsellor?) I have found this helpful with my DH, as there are issues he won't discuss with me, but will with a third person in the room.

Also, if you are in London or the South East it would be a good idea to seek a diagnosis, purely because it may mean you can specify a particular school when you apply and that could really help e.g. you could greatly increase your DD's chances of being in a school that is physically suitable for her, with good pastoral staff etc (or simply one that is easier to get to appointments from so she misses less time). I don't think you NEED a diagnosis to meet medical criteria to name a school (I'm not sure though, you should get advice) but having a named condition can't hurt.

Or anywhere where there is a shortage of school places - no doubt there are other hotspots in the country.

And one further thing:
If you show this to your dh, he may say "she doesn't understand really, Missing a hand. Pooh! That's nothing! If it was just that I wouldn't worry."
And in some ways he's right. But it's also very easy to look at other diagnosis and think they're easier. I remember thinking missing a leg would be easier because it's easier to hide (they would be much more disabled though). Or a heart condition. Just operate and they'd be fine, and all would be sorted.
It's not like that. And I think I knew at the time. But everything else seemed easier than what I was dealing with.
What helped me at that point was a friend of dh's died. They were about 27 yo at the time, and he'd been born with a heart condition. At his funeral his dad said "we had him about 25 years longer than we expected". That's when it hit me that actually we were pretty lucky that was all it was for dd.