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?

your DH is obviously still in denial. It is hard to accept that your DC's path in life might be different from what you were hoping for.

It took my DH a lot longer to come to terms with it and I know friends with children with SN had similar experiences. Whilst he is very unreasonable, I think some of the posters here are a bit unfair.

Perhaps he fears her being “labelled”in some way and hopes there will be a change in your DD development soon. Personally, if I was in your shoes I would want to know as they may be some treatment options, plans to increase your family etc. Also for starting school etc. But this is something you really need to come to an agreement on, has a Health Care Professional, discussed it with your DH? Are the tests invasive in anyway? Is that a concern? DH needs to realise that getting a confirmed dx can only be a positive step forward for DD. Wishing you all the very best OP.

It's a tough one, my dh (now ex) was not very supportive whilst going through diagnosis for both our dd's, I think he only ever came to one appointment, he found it very hard to except that there was anything wrong. We chose not to have genetic testing as we felt we didn't need too, they already had a diagnosis of ASD and a few other things. I don't think any other diagnosis would have helped, both dd's are now in high school, dd2 in a specialist school and gets a lot of support. I split with dh almost 3 years ago and since splitting he has been more excepting of the girls conditions though he still shows no interest in any medical stuff and I don't even tell him about appointments or school meetings.

If you want to go ahead with the testing then do it alone and deal with the fall out later.

Hi OP, I just wanted to say that whatever you decide to do, you don't need a diagnosis to get extra support at school whether that's through an EHCP or not. If a child has SEN, and their needs cannot be met at school without additional funding and support (i.e. EHCP), that is the test for the LA agreeing to assess. Doesn't always work in practice (as in, they may say no to assessment at first, in which case you would need to appeal) but the legal test is whether or not the child has SEN which may require special educational provision to be made. Not whether there is any diagnosis. You've already mentioned global developmental delay, speech delay etc - those things themselves point to her having additional needs. And obviously a diagnosis is useful to have, but just wanted to reassure you that a lack of one shouldn't be a barrier to getting the right support in place at school.

I haven’t read all the replies so sorry. I two kids with Sen and there was a underlying genetic condition totally unknown to us.
It effects your future children if that’s your case.
Getting SEN support at school is extremely hard. There’s not enough money as it is without finding more to support with extra needs.
There’s portage, feet funding, dla all these things to help you if you find out now.
Every bit of our journey was hard to hear but my kids are still my kids too. I just understand their needs 100% and I know for a absolute fact that they never grow out it. But I also know their potential and they are both as well placed as they can be to meet that potential now and knowledge is power and I’m extremely well informed.

Your DH is being selfish. He's in denial and he needs to grow up.

Do what's best for your child.

Trumptown I have to disagree. I was told many times that my DS didn’t need a Statement for his asd. Yet, at every turn we were asked “Does he have a Statement?” Getting one (and now an EHCP) allowed us to have some sway over what was needed for him. I think that with the funding issues for education we have now (and it’s going to get worse) that having a diagnosis and EHCP is of massive value, if it is needed.

That’s just my experience.

YANBU, for all the reasons that have been posted above.

It will also help if you need/want to apply for DLA for her at any point. It could make a significant difference to your finances.

Maybe show your DH this thread, maybe he'll get why it's important to know what you're dealing with.

We had EHCP before we had any official diagnosis.

That’s not to say diagnosis isn’t important but it shouldn’t stop access to support when that support is needs based. (Same goes for dla)

Op I too think you should go ahead. This is hard to deal with but your dh is not putting the wellbeing of his dd ahead of his own feelings.

Re. Squint I had a squint operation at 7 (after a very very long time on a waiting list) it wasn't entirely successful. I had it redone at 16, still not great. It is my understanding that the earlier it is done the higher chance of complete success so I'd urge you to look at this again sooner rather than later.

If I went behind his back could he still withdraw consent? What happens if he does? We've never ever been at logger heads like this before, usually we agree or try to compromise.

I don't know the answer to the first two questions, but when it comes to being at logger heads with your DP then sometimes it can help to discuss things with a third person in the room. Have you a relative you both like and trust who could act as an impartial mediator? The best outcome would obviously be to go ahead in mutual agreement, but there could be a compromise somewhere.

Does DH think the matter is dropped? Or does he realise there's more talking to do?

Not a big surprise that after photo gate it becomes clearer this is more about your husband's ego and saving face than about what his best for his child

Go ahead without him, unless you agree that his needs trump hers

It's not hard to see why there are a greater number of marriage breakdowns in families with children who have additional needs

Has your dh attended every doctor''s and ped appointment with your Dd? If not then he should attend so he can get the professional opinion and not the professional information through you. Without directly discussing it with them he shouldn't be making decisions. Imho it would be important for your Dd to get a full diagnosis. Starting therapy and getting support early could make a big difference to her development and later quality of life. Good luck op.

As for testing, my ds had lots of testing at your dd's age, including MRI under general anaesthetic, daily blood test, etc. He doesn't remember any of it.

I think it's better to get diagnosed earlier if there are some problems, and it may rule out things as well.
It's better to know than regret later for not going through with it when you had chance.

Good luck.

We had to wait 2 years for an appointment with the genetics consultant and a major gene duplication was found... But it meant nothing to them, there was no literature on it. They requested we enter it into a database and so that is it. My child is almost 8 now, certainly has no mental disability whatsoever, still has some physical marking but so slight that it is not really noticed and has completely outgrown her condition.

We have had almost the same experience. DS was born with a slight deformity of th hand, very minor, and some slight irregularities of one eye, again barely noticeable to anyone sceptical and first time mother. It took six months before his doctor could even see the issues I'd been pointing out since he as born. Then we spent 2.5 years seeing paediatricians, orthopaedic consultants, heart and internal medicine consultants, hand plastic surgeons, ophthalmologists, having ultrasounds and ecgs, blood tests etc, for everything to come up normal (in the case of his eye and thumb, not worrying). His speech is a bit behind, but is improving and though he has seen a SALT specialist, she thinks he's within the normal range. He's hitting all his physical milestones ahead or in time, and his emotional and social on time, or a tiny bit late but still within the normal range. After seeing a geneticist early last year, we eventually found out in May that he has a small deletion on one of his chromosomes, which has never been seen before. They couldn't tell us anything about his prognosis, but many deletions can cause learning difficulties and they were especially concerned about one of the missing genes as when this gene is mutated, it is usually fatal in thto second decade. Obviously his we horrible horrible news and we really struggled with it, until a couple of mons ago when they told us, after testing me and DS's dad, that I have the same five genes missing. Since I'm still alive and nearly in my fifth decade, and have no obvious learning issues, it was a massive relief. They have said that it may be that his minor issues are caused by something else, but if so, they don't know what because they don't fit with anything else.

We now feel like we went through a massive amount of stress and upset for no real reason, and to be honest I wish we'd never had any tests. They're talking about putting us in for the 100,000 genome project but we think we'll say no to that - but that's because DS is largely fine and seems t be developing normally.

Having a label is a mixed blessing, I think. You might be able to get more support, both from peers and from the education system, if there's something you can point out and say "This is what is wrong". But sometimes maybe it's better not to know.

Is there someone who DH can talk to? He spubda like he is really struggling. Of course he loves your DD and she's awesome etc BUT he also doesn't want this photo up where her squint is quite obvious and expect its her to catch up wothon a year. What of she doesn't? He seems conflicted between loving her and accepting there may be issues. He needs reassurance that the two are not mutually exclusive. Is there someone who he could have a good old vent with to talk through how he feels?

Were lucky really that genetics were done as standard at 4 days old. What it has meant for us (given doctors just gave us lists of what might happen) is that there's a few bits that need extra testing (kidney scan and full blood count annually), we have an overarching explanation for lots of random bits of him (word circulation? Ah its just those wonky chromosomes!) and most people are more understanding that he needs a bit of extra help.

I would push for the tests but only you know what that will do to your family if you go again his wishes.

My son has dyspraxia. He wasn't diagnosed until he was 12 for a number of reasons, but my then husband was not in favour of it at all.

He felt it would give him an excuse (I know, I know) for not being able to do things and that it wouldn't change who he was and we'd just adapt as we always had.

But... I pursued a diagnosis anyway. It meant that we also know about the visual processing disorder, we did things differently at home, and he got extra time in his GCSEs/A Levels. He will qualify for extra support at university.

Contrary to my husband's belief, it meant he was more confident and 'owned' his condition - he no longer felt like he was "rubbish at everything" and that it was for a reason.

Husband was forced to take it seriously and, has since admitted after speaking to other parents of children with addtional needs, that his fears about being labelled/pigeonholed etc were unfounded.

Your husband doesn't want a diagnosis to protect himself from the truth, whatever that might be. It's not in the best interest of your daughter.

I told my exh that I was pursuing the diagnosis because having one wasn't going to reify the condition. It was already there, and always would be, whether we knew about it or not.

It was his own fear that was influencing his decision.

Your daughter is the priority. This is her life, her condition and her diagnosis. Not his.

You can get an EHCP and DLA without a diagnosis but it's flipping easier with one.

This is about your DD, do whatever it takes to make her life easier. To me that would include investigating her genetics. It's for her future - she may develop absolutely fine but she might want children by which time the medical researchers might know more about her genetics and whether it would pose problems.

Hi
Not read all the replies, as I have to head out in a moment but wanted to reply. While I sympathise with your DH's feelings and have at times felt the same as he does for DS2, getting a diagnosis (much late rin the day than you) really helped us and DS. DS2 had a list as long as your arm of individual issues which kept us in and out of hospital for years. We were in a state of constant anxiety and for the first two years didn't even know if he'd survive. The stress was very hard.

With a diagnosis came much better treatment. And knowledge. You can't over-estimate how helpful it is to actually ^know6 some stuff about conditions. For a start, you can join forums, where other parents with years of experience recommend coping strategies that have worked for them or their DC - things that make thgem more comfortable or alleviate symptoms, or best doctors/treatments for given aspects of the condition.
It helps with school. You say: DC has X, that's why they might/can't/struggle with XYZ. And teachers can't tut. There was a lot of tutting about laziness when DS was small as he was clearly bright but just couldn't do some things phsyically which they put down to bad attitude. It soured my relationship with his primary school.

Sorry, this is a bit long. But I'd say knowledge is power. It's leverage later on for schooling, for insight and info into new treatments. She won't remember the (not very invasive) tests. She will remember you did all you could to help her.

And the massively positive aspects of your DH's attitude still hold true. You love her for who she is. Her illness doesn't define her, or your lives together.

Forgot to say I feel for your DH and entirely understand his resistance but this decision needs to be purely about the benefits for your DD.

SaturdayNight's experience for her son is similar to ours, in that he got more confident and happier in himself post-diagnosis.

We are awaiting genetic testing for my DS. It has never even been a consideration not to have it and no harm to DP but as I am the one taking DS to and from appointments, giving up work to facilitate doing so and handling all of his care I will be the one making that decision and if he has a problem with it then too bad.

We had genetic testing for DD at 16 months, and luckily DH was in agreement that if there was something there, it was better to get a diagnosis because that would then open more doors in terms of getting various support/EHCP and services involved. Genetics came back clear for her but we have now ruled that out and other conditions are being explored, she's 2 and a half now. Go ahead with the testing, as pp says knowledge is power, and it will benefit your dd to have answers. We are so much further along now having ruled out things.

In the end, for our DD, having one parent who handled all this stuff and got her interventions and another parent who saw her as perfect the way she is worked out really well for her

This comment stood out. Maybe you can discuss this with your DP by saying that while you and he have different approaches, together you can give your DD the best of both.