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?

I had a long answer typed out but I lost it

Shirt version: he’s being selfish. The tests aren’t for you or your DH, they’re for your child, to try and get the best possible support for her in the future.

Sign the forms yourself and get it done
I think you’d resent him if you didn’t do it just to keep him happy. Which he won’t be anyway.

Also, testing at early age is less traumatic to the child than when the child is old enough to be aware of what's going on.

I understand where your husband is coming from, but the thing is, you may make discoveries that help you to (1) get the right treatment to cure/alleviate symptoms (2) get the right diagnosis so you know how to best care for her (3) right diagnosis which means she gets extra support etc. But you know all that.

DS began having health problems soon after birth - respiratory distress on a frequent basis, which could have killed him every time, speech delay, reflux, dislocation, collapsed lung. All turned out to be connected. We went down the testing route and that included looking at some life-limiting illnesses. Blood tests are unpleasant but they ruled out a handful of terminal/life-limiting illnesses for which we were grateful. An operation under GA was worse, but we discovered he also had severe infections that could be treated, and now we have a range of treatments (AB at home), a diagnosis which is helpful with school, nursery, every time we have an emergency admission away from our usual hospital. It's helped with work that I can name what is 'wrong' with my child. and ultimately what we discovered was that he would to some extent grow out of his condition.

I suppose a key thing to consider (and ask the medical staff, if you haven't already) is whether they suspect something which either needs, or can be improved by, medication?

DS is going to be seen by an endochrinologist next month after our new GP picked up that he has a set of symptoms we always assumed were down to the ASD, plus a physical characteristic we'd seen as separate. The conditions they suspect are possible can be treated... as long as you get there before puberty hits, and he is 9. So there is a clock ticking and he needs the assessments asap. That's something DH and I are united on because there is a real medical reason to act swiftly.

If they suspect a condition that can be medically treated, and improved, then it isn't fair to refuse to allow her to be assessed, and for the benefit to start as soon as possible if available. But if what they suspect is treatable via standard early years intervention, then I can see his point, too. It won't change anything, because it's only after Yr 1, in this area anyway, that a diagnosis unlocks extra support.

If there's no treatment that can arrest or markedly improve whatever they suspect then you are dealing with two very different parental approaches, equal in validity. Yours is like mine; I am a researcher and a planner, and I like to know what I am dealing with. Uncertainty and hope and fear is a big recipe for anxiety and stress, whereas I can deal with anything if I have information, and tools. I like courses, I like books, I like learning. DH likes all those things about South American history, but with the kids he'd rather live in cheerful denial so he can be a brilliantly funny, warm, playful dad to them. He's a worrier if he stops to think about the harder aspects, and that impedes his ability to just be with them in the moment. Each of us knows our strengths and we just respect the other does things differently; I do the courses, and I do the research, and he does the Lego and the chess and the obscure DVDs from Japanese anime and the picking up books from charity shops he knows DS will love. All of those support our kids - both approaches. And that's fine.

I think you maybe could benefit from doing what DH and I did, which was to leave the kids with my Mum one evening, go to the pub, and talk about it all. Why we felt as we did, and what we needed to cope with a child with additional needs (now almost certainly two with additional needs). We agreed to respect the other needed to do things differently - he may not realise that just as he needs to be able to just let it be for now, and to love her and let her be supported with open future skies, you need to know what the signs are, and what indications may be for what is behind her differences. If he doesn't want to be party to that then that is fair enough, but by blocking it, he's making it much, much harder on you. Can he perhaps agree that you go the investigation route, and he doesn't get involved unless there is some sort of important diagnosis, which he really needs to hear? I mean, you can potentially eliminate all sorts of things by the testing. You can rule lots of stuff out. My expectation and hope from my own child's appointment is that he has a cluster of ASD related symptoms that are atypical, and he can be signed off from the endochrine side. That's a definite possibility and one he might want to reflect upon.

I send love. It's such a hard time, when you want answers but are fumbling in the dark, and it's harder when your co-pilot in this parenting lark sees no point in anticipating trouble, and would rather just appreciate what you have today. Talking it all over - not the issues with DD, but how you both feel you need to cope with them - is the way forward, I think.

Sorry, should be clear: the condition is as well as ASD, not instead of. I'm not suggesting that my husband blocked investigations, leading to a misdiagnosis. His approach, which is similar to your husband's, has never been to block testing where there is an intervention that can only be unlocked via investigation. But he would rather we not medicalise unless there is that reason, whereas I, like you, just want to know where we stand.

Your dd’s needs trump your husbands wishes. A dx helps you understand and explain her difficulties and anticipate her future. I would go ahead.

With a brother in his 40s that had an underlininh condition that was never picked up and a dad like you dh that refused and opposed any investigation I beg you to do evwrything you can to get as more info as you can about your dd.

My db has no help and has been ao damaged by nobody understanding him, by receiving no help, by beijg forces into being 'normal'.

Stay strong. You are on the right parh

I should have made it plain that my son had the extra help from therapists etc solely because he had the diagnosis of ASD. He can talk , interminably , he did not need to be taught to speak but rather to process the information and converse in a way that would not cause problems with others. He needed some help with fine motor skills and the paediatrician understood the specific issues he had with processing information. I don't believe we would have had half that without the diagnosis , specifically it enabled me to understand how he viewed the world and why he sees things so differently. I am used to people with ASD , I had read a lot about the condition but the professionals helped the family considerably and to me that is priceless.

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.

This sums up the EHC Plan conversation.

In order to have a good EHC Plan, there has to be a good set of reports written by professionals outlining, in detail, the child's needs and making recommendations for how these needs should be met.

Theoretically, these reports will be based on each professional spending a decent amount of time with the child, observing them (in different places where possible), talking to them, talking to the parents, discussing them with other professionals and reading the other reports available to them. They should use this information to inform a report that is very specific to the child and their individual profile of needs.

In reality, many of these professionals are very pushed for time and are forced to make judgements based on factors like the child's diagnosis and recommendations are often based on what usually works for children with the same diagnosis.I have literally dozens of reports for each of my DDs and far too high a percentage of the content is based on their diagnoses, not their observed and recorded needs. There are some really excellent reports in there too.

In an ideal world, schools and professionals would keep to the Code of Practice and base reports and provision on need, not diagnosis, but in reality a diagnosis is often a key to greater understanding and more appropriate support.

The poster above who described the process of getting an EHC Plan was pretty spot-on. It can be a long, drawn-out process with delays of months at a time built in for and created by LAs who are aware that moving slowly postpones the point at which they start having to pay more.

Early identification, leading to early intervention, can have a significant positive impact on the outcomes for children with disabilities. Lots of interventions work better the younger the child is when they start.

However, I would find it very hard to go ahead without my husband's consent. You could contact the paediatrician and ask for an earlier appointment, if one becomes available, so that you can all discuss together the pros and cons of testing at this stage.

My DH has attended very few appointments over the years and, for that reason, he trusts my judgement on matters like this. If your DH would like to prevent you from going ahead with something you feel is right, he needs to start attending all of the appointments so he has all of the information required to make that judgmentally.

LoislovesStewie not all areas offer that support, though. It's not uncommon to get the diagnosis, and then get an assessment appointment with an OT which says, "serious sensory processing problems, here's a leaflet, bye" and an appointment every few months with a generalist paed who knows less than you do about autism. Schools don't always involve the specialist advisory services, either, and if you don't know you can call them directly, then you don't see them. A huge number of families find they get the diagnosis, and that's that. My own child's school blocked an ed psych, despite his paed report insisting he needed one, on the grounds that he was on the gifted and talented register. (?) He's home educated now, with a tutor who is a qualified primary special needs teacher, and she's uncovered huge problems with memory and processing that almost certainly indicate ADHD; when he's back in mainstream, part time, we will use her report alongside the paed's to force assessment, if the new school baulk.

I appreciate your experience has been good, but in a lot of areas, it's almost nonexistent. You have to advocate and push and even fight for it. My son's paed said my solutions were to home educate, or involve solicitors to force the provision his difficulties needed.

Sorry to sound bleak, but I often read things that imply this huge system of support swings into place, and that's what I expected to happen. It's not like that in a lot of the country. At all. It's a frightening chasm of nothingness.

It's so tough. I see both sides here because I am both you and your DH. There's a wanting to leave well enough alone. The early years are so precious, fleeting, and who wants to mar them with ugly words like 'disorders', 'genetics', 'blood tests'? Nobody. Especially you, OP. This isn't fun and games for you. I've walked your walk and it's as tough wondering what's wrong as it is knowing what's wrong.

But knowledge is power.
And that power leads to relevant support.
Your DH could be right! She might just get it all together and a year from now, make great strides. But you don't know this right now and you have to trust what you're sensing.

I believe you'll have to choose to either do battle now with DH over wanting tests to go ahead OR do battle later when he realises there's a lack of transparency in your relationship keeping you both from agreeing on your daughter's needs.

I went behind DH's back. It nearly cost us our marriage but we got through it.

I'd be transparent with your DH, hard as that will be. I would absolutely get those tests done. But you can't really leave him in the dark.

Best of luck to all of you. Be determined. You'll all get through this intact.

Definitely get the testing done behind his back if you think he is likely to make difficulties. His feelings do not matter and should not be taken into account: if he carries on being obstructive and leaves, well, NBD. DD is not his possession and he has no right to interfere with her getting treatment she needs.

Bear in mind that, with this and the photographs, you've got a man putting himself first and digging his heels in. I wouldn't waste time trying to talk him round - you will need that time, and energy, to help your DD get what she needs, and arguing with a man who seems to expect to be obeyed will drain you.

My DH has attended very few appointments over the years and, for that reason, he trusts my judgement on matters like this. If your DH would like to prevent you from going ahead with something you feel is right, he needs to start attending all of the appointments so he has all of the information required to make that judgmentally.

Completely agree with this. DH and I have reached a point where we agree he attends important meetings where we are likely to be in conflict, so two are better than one, or where we are dealing with a significant change - so eg his endochrine one. When it's standard, I go. That way I make all medical/educational decisions on a day to day basis, so I feel I have some control over trying to support him and build a life he can thrive in and enjoy, and DH doesn't worry constantly about his son's challenges and what the future holds. It works for us..

A lot of people here are saying the child's needs trump the father's. That goes without saying, but there's also this: the child's needs also involve a father who is involved, and parents who remain married. A child with two parents committed, involved and concerned is clearly better off. If the OP wants her views to prevail, then she needs to at least attempt to talk to, and with, and to listen to her DH and to negotiate an outcome that is genuinely best for the child. Which means listening to the father with an open mind, and then asking him to hear her with the same respect.

This needs to be negotiated, and discussed, and talked about, and worked through. Not with the father jettisoned, ignored and cast aside as a decision maker. He may be acting this way for valid reasons, or he may be for selfish. We don't know, and at this point I don't think the OP does either. It needs to be worked though.

My own husband found losing his idea of his son very hard. He was prouder of him than he had ever been of anything, and he's a successful person. DS was incredibly popular in preschool because he was never nasty. He was tall, and strong, and always happy. He was far easier than most kids because he was logical and could be reasoned with. He taught himself to read before starting school. It's not healthy but DH had projected this whole amazing life on to him, which only became apparent when it all fell apart and I started seeking input - I'd always known something was not quite right, but DH hadn't at all. And his journey to dealing with that, and accepting the kid he had and not the one he'd believed, was hard. It doesn't make him a bad person, or a bad father, and yet if I'd taken the approach some here are advocating DS probably would have lost him, and so would I. He came around to the point he's amazing when we are in a crunch, and really staunch in supporting DS in a range of ways I can't.

We're all imperfect. All of us. And both parents should have their views and feelings considered, in the best interests of the child. The diagnosis is irrelevant unless it unlocks treatments, support, or information that can help the child and that is not as much of a given as some claim. It depends on a lot of other factors.

I understand completely that not all areas offer what my son was lucky enough to receive. I have said I am sorry that others have not had the good experience that our family has had, BUT I still think getting a diagnosis helps. For one thing it is a handy shorthand for people including professionals to understand. If you consider that physical illnesses /psychiatric issues have names then that convey the symptoms and give an idea of what the illness is rather than always having to go through those symptoms e.g I have periods when I hear voices and am out of touch with reality = psychosis, having pains in the ribs when breathing = pleurisy . ( I agree I am putting this very simply)In this way professionals know how to treat the person. If you have to keep on telling people what the problems are by listing symptoms it must get frustrating for everyone. Without knowing what the diagnosis is then how can the appropriate assistance be offered? There are many illnesses/conditions which are similar to others, I would always ask for a diagnosis . As I have said on other posts I used to work in local gov't as a homeless officer , once I knew the diagnosis I had more idea how to assist my customer. I think that applies to most professionals. Basically it saves time at interview.

Your DH's feelings DO matter a great deal.
He's afraid.
Do the tests. But as I said before, be transparent with DH.
Seriously, I went behind DH's back and it was wrong on so many levels.

You'll fight over this. It won't be fun. But you have to do the right thing for DD and be up front with DH. It will not be easy. But life is rarely easy when it comes to times like these. Strength and perseverance.

You're a family. You're all involved in this together. Don't lose sight of that.

sleeponeday that's a really moving, excellent post.

The loss of our idea of our kids is a bereavement we don't openly acknowledge. OP, this is what your DH is unwittingly dealing with. It's frightening. It really is. But it won't always be. And who knows? It may all be ok. I do hope so.

Hi everyone sorry for not coming back sooner I've been at work.

Firstly DH has never explicitly said he didn't want photos on the wall because of her squint, he just said he hates all the photos and doesn't want them on display. He still won't give me a reason why.

Secondly about those saying the squint needs correcting now. There's 2 types of squint, one which affects the vision and one that doesn't. I had one that affected my vision and have had 4 operations to correct it, the first 2 of which told place when I was 18 months old and 3 years old and I remember neither. My squint was corrected in a final operation when I was 7 (which I do remember) and apart from wearing glasses and a very very tiny scar on my right eye which you can only see if you get really really close to me I've had no problems.

DDs is the tyep of squint that doesn't affect her vision, or it only mildly affects her vision (+1 in one eye, +1.25 in the other). However her squint measures quite large and is very very visible to the point I've had other parents from Nursery ask if her eyes ok. The operation would be purely cosmetic surgery which has no upper age limit (there was a 60 year old in the clinic last time we went who'd just had the cosmetic surgery on her eye). DD is monitored regularly though as the squint could "regress" or pull away so then she may need the corrective surgery for it which does have a time limit, IYSWIM? At the moment we feel it's her body and it's not up to us to decide if she wants surgery purely for cosmetic purposes. She switches the squint between her eyes well and day-to-day it causes her no issues (no glasses or anything yet) so seems an unnecessary operation at this stage. Her ophthalmologist backs our decision for now, she operated on my squint and remembers me well (never moved out the area) and she says there's a huge difference between me at DDs age and DD. However we would reconsider if she was getting bullied --she's not atm as two of the other children in her room Nursery have squints but less obviously - or if she as she got older expressed a big desire to get it done, say before secondary school started. I suppose maybe DH is regretting us not having it done? But he knows we can change our mind at any time, I literally have her consultants card and all I need to say to the Secretary is we've changed our mind and would like to go ahead with the operation afterall and a pre-op would be arranged and the operation discussed.

Her squint is not a major concern, the paediatrician briefly asked about it yesterday but the major things are the global developmental delay. She's met all of her physical milestones between 2 and 5 months later than she should of (rolled at 8 months, sat at 10 months, crawled at 14 months, walked at 23 months) and has often learnt how to do something, then stopped even trying to do it for up to a month then started doing it again. , they've said the physical delay is not caused by her hip dysplasia. She's a little behind generally on all parts of the EYFS as well, between 2 and 4 months depending on which part apart from communication and language where she's between 9 and 12 months behind. She also does the "forgetting" thing with words, so she'll learn a word and either forgets it for a few weeks or stops using another word she's learnt. There are words she's stopped using altogether after learning new ones.

Her Nursery, who are brilliant and she absolutely loves attending, want to get a diagnosis ASAP if there is one. Like others have said here, it'll be easier for them, and any future school/s to support her and get any additional funding they might need, e.g. Nursery can purchase or hire a special pushchair/wheelchair so she can still go out with the others (she's currently ok in a normal single or double stroller) as they often take walks into town or to the park. She already has a few small adjustments; she has to be lifted by her thighs not her ankles for nappy changes, and when the dance teacher comes in for the other children DD goes off with her 1-1

Future children where not a consideration for me, and I'd have crossed that bridge if or when we decide to go forwards for it but if it did turn out to be something that another child could have that would be a serious consideration to me.

DH did attend the paediatrics appointment with us yesterday and I'd say he comes to 50-75% of her appointments depending on his work (he works varying shifts) and how much notice we get of the appointment (with a couple of weeks notice he can easily move his shifts to be able to come with us) and he was able to ask as many questions as he needed.

The test is un-invasive; a blood test taken from the arm or hand - she's had blood tests in the past and hardly flinched, was more concerned about getting a sticker to show off to her nursery friends. A urine sample and a stool sample which as DD is still in nappies may or may not be difficult, but I want to give it ago (and I know her Nursery will gladly help with the latter two samples). I do lose money by not working, but both my work place and the Nursery are very flexible so I can make my hours up elsewhere if needs me and there's spaces for DD to go to Nursery for extra days or half days were required.

DD is a lovely child, I get complemented daily by her Nursery and my friends about her, and her sunny personality. And a diagnosis won't change her personality (I wouldn't want it to) or how I see her. But it is becoming obvious that she is not like her friends at Nursery. To me she will still be my daughter. I only didn't ask about the diagnosis because I'll spend the next 2 months over Christmas, watching and worrying about her. I do have a sneaky suspicion I know which conditions they're ruling out, a few have been mentioned on this thread. I also just want answers, and to be able to say to her grandparents when they ask me why she hasn't done x yet I can say well "she has x condition and that y and z so that might be why".

I think it's difficult because DH always thought SN meant "badly behaved" (I know it's a view shared by many people - I knew differently as I've worked in schools and seen a huge number of SN) but DD really isn't, she tantrums like any child but she's kind to her friends, if they fall over she'll walk over grab them by the hand say "Ih dear" and gives them a hug, she's incredibly funny so for example leaving Nursery one day last week the Room Manager said "I'll see you tomorrow Fluffy Cub" "no" she replied firmly "Why won't you be in tomorrow?" says the manager "Dead" comes the reply, no-one knew where to put themselves we still don't know if she meant she'd be dead or the room manager would be.She takes everything in her stride, from blood tests and urine samples to X-rays and ultrasounds, she smiles all the way through even though some of them clearly hurt. She is so well behaved, but is the type to hold it all together and release when she gets home, Nursery have never implemented the behaviour policy with her but she does tantrum at home when tired. Both DH and I love her so much and I can see his point of view.

Guess it's back to the drawing board for another chat.

I want to tell you, that its often MUCH more straightforward to get a statement/EHCP at pre-school than it is if you leave it later. Early intervention is massively important in helping your little girl to meet her potential. All 3 of my children have SEN, and two were statemented. It was a complete pain to get my ds1 statemented when he was 8, compared to my ds2 who got it at pre-school at age 3 or 4. I have also heard that it is more straightforward at pre-school from other people too, so really if things are noticeable enough when she is two that they are pushing for diagnosis, then please please pursue it.

I am seriously fucked off with the amount of men that are in denial about their childrens needs, or feel embarrassed about it, or block interventions or make it hard to get diagnoses, or block applications for SEN schools. Its so bloody common.

I have a DC with a chronic condition diagnosed shortly after birth. having a child who is less able than others or different in some way affects parents in different ways too. There is a period of mourning for the life that they aren't going to lead but we are the adults here and have to pick ourselves up and do what is best for the child. because at this point in time only - ONLY - your child matters.

the testing is absolutely vital a clear diagnosis takes away the what if fears that we all have. it enables you to face the challenges head on and to get the help and support that you need. this should be non negotiable with your DH.

If she had an obviously broken arm would he wait and see? no of course he wouldn't, he would take her to a and e.

I appreciate he is afraid. but how much more afraid will she be as a young child knowing that she is different from others but not knowing why and not have parents that can do the things that she needs to make the difference less noticeable.

you have to quietly and firm explain to your DH that it only needs one signature and you are going to sign it. if she has the tests and gets the results then you at least want to know what they are even if he doesn't. Some adults just cannot handle disability and I get that but that is their problem and not the childs.

get the test. Genetic testing is getting more advanced. Best case you identify a co ndition and get to join support group and gain more knowledge. Worse case is remains unidentified undiagnosed no harm done.
Just sign and do it.
Easier now when she still young

And sign up for local mixed special needa support group for young child. You will need support moving forward and try get dh on board.

Ds has microdletion Diagnosed when he was 12 as testing was new then. Now it is fairly routine . Having a name helps. Don't miss that chance to run the standard tests. Of course you might. It get answers yet. It you lose. Nothing by having the basic tests run.

I have a very rare DS who is now 8. In the early days DH was very much...he doesn't need that, he won't need that. As time goes on and he accepts that DD has extra needs...he will come to terms.
Regarding genetics,you need to know. Although it won't change your DD it may help direct you in terms of treatments and help explain behaviours and direct her learning. My opinion has always been ...I need to know because if I don't then I can't help DS.
If you'd like to pm me ...I'm happy to chat ...this is all about your DH not accepting DD issues.