Can you tell your DH/DP how you really feel?

[Lillypond]

I've been feeling so hurt and bitter about DS's problems for such a long time now, but I can't tell DP how I feel. I can't find the right words and everything I say makes me sound resentful and critical.

He isn't worried about DS and thinks everything will be fine. If I cry I feel like I'm bringing him down and it all feels so disloyal to DS.

Is there something wrong with me for feeling like this? Before I had DS it never ocurred to me that parents of children with SN would feel anything other than unconditional love for their child. I don't really feel that at the moment. I don't even want to get out of bed and face the day TBH.

[piffle]

I'm not sure who old your ds is lillypond, but I do recall getting very despondent and depressed about dd when she was 6 mths and seeing the mountains ahead of us, while dp remained very practical and firm and calm, saying, we cannot guess now what the future holds, so we won't fret about anything until we get to it.
Now I find its me making him feel better esp at the moment, with statementing and DLA forms etc.
I have to tell him that everything is fine and she'll be ok.
If I were to fail at the same time as him, I'm not sure who we'd cope...
I'd like to tell you it goes in fits and starts, ups and downs, you do learn to handle it better as they get older
Hugs xxxxxxxxxxxx

[Cristina7]

Hi Lillypond. Is your DS's diagnosis relatively recent? I felt very depressed about my DS for the first 6 months or so (until he showed definite signs of hearing with the hearing aids) and it took me about 2 years to fully come to terms. IKWYM about not knowing whether to bring up your fears to your DH but better that you share the anxiety and support each other. There were times when one of us was down but the other had noticed improvements, or had seen a lovely side to DS that the other had overlooked.

[auntymandy]

I would write it all down and show him. it is often hard to talk to people about eelings. Nevre feel guilty about how you feel

[Lillypond]

Thanks ladies

DS is 3.8 yr's and was born with a physical deformity and has recently been dianosed with autism.

DP will say things like 'I bet he'll be popular with the girls when he's older'. In my head I'm thinking 'don't be so f*cking ridiculous' and I'm so disgusted with myself for it. I just can't be positive about the future and don't want to think about it, but even in my wildest dreams I know that DS's problems are hardly going to make him a playboy. I feel like I'm the only one in our family who's living on planet earth and I wish I was away with the fairies like DP seems to be. I can't let myself believe that DS is going to be 'one of the boys' because I know he won't and it will be much harder in the long run if I kid myself about it all.

His DX is very recent but the deformity has been there since birth and TBH the deformity is harder for me to deal with. It still hurts just as much now as it ever did.

I don't think I could write down the way I feel and let DP read it. I can't find the words. I've tried to talk to him but I just say 'I don't want this, I want to be like everyone else', and he says 'what don't you want'? I don't know how to answer that honestly.

[piffle]

I think what helped me the most was taking a long hard deep breath and facing up totally to the fact that dd had a rare syndrome, would always look a little different and have issues to be dealt with, ie: she will be special needs - probably all her hr life, e don't know to what degree but we know bottom line, it is there.
You cannot change anything, you can only learn to cope with it and as its your child, you simply learn to do it, take all the guidance and support you can, can you join a support group perhaps? We get a lot of support from BDF new life (formerly birth defects foundation) and that helped us get over a few hurdles.
HTH
xxxx

[JakB]

Heh Lilypond, from the mums I've met so far, DH's who appear to be absolutely fine about everything are incredibly common. Often the mother absorbs everything whilst the dad goes into 'strong' mode. But they are hurting just as much, it just takes them longer to express their feelings. You will find a time, I'm sure, when you can talk honestly with your DP about your DS. You will be strengthened by your love for DS and, inevitably, all the battles you will have to go through for him. I remember my DH not really taking anything in to start, now he's incredibly philisophical and very honest about his feelings. It's his parents who haven't got a clue! It's such a tough time for you and you have to be honest to yourself about your feelings. You have to cry if you feel like it and feeling sad about your DS is not being disloyal at all. All of us have felt low about our children, it's such a rollercoaster and being honest with yourself is a very important in the healing process. Lots of loveXXXXX

[SoBlue]

Hi Lillypond im a bit of a realist and sometimes that makes me negative about things. What i tend not to account for is the fact its all an unknown quantity. Maybe your dp is on the side of optimism which may not be totally realistic but it certainly makes the situation look brighter and probably more bearable.

[Lillypond]

Piffle I think you hit the nail on the head when you said that if you both fell apart how would you cope. I need him to be strong at the moment because one of us needs to keep going. If I tell him how I feel he might crack up as well. I don't think it's ever ocurred to him that DS's problems won't just disappear.

I'll contact the BDF to see if they can help at all. I'm not sure if they can because I don't think DS's deformity is classed as a defect. It's a craniofacial deformity that was caused by me having a small uterus so it's not genetic. There was treatment available when he was a baby but only if we went private and we didn't know it even existed at the time. The only option now is surgery but it's unlikely that a surgeon would perform the operation because it is deemed to dangerous for a condition that is purely cosmetic. I really need to talk to about all this but no-body knows what I'm going on about when I try. His specialist wasn't very helpful. His opinion is that noboby is perfect physically and that it should be less noticeable as he gets bigger.

Thanks for all the hugs and nice words. Sorry for waffling, I know I went a bit off topic. These are things tat I should be saying to DP really, but it's so much easier to say it on here.

[anniebear]

Listening to other parents and from what I have read here and on other sites and my Friends with SN children this seems to be the way it is....

The majority of the Mums (inc myself) are with their SN child all day, you see them a toddler groups with other children, at School or the park etc.

We tend to be a bit more negative than our DH, I think because we see our SN Childs capability's and incapability's more.

DH/DP come in after work, have a play with their child and maybe don't see the disabilities as much. They don't see their child with others day in and day out.

This is not everyone of course!! Before anyone corrects me lol. I just think in general that's how it is.

So you are not wrong in your thinking.

I can turn round and say "well Ellie is unlikely to have a Boyfriend, get married or have Children" My DH hates me saying anything like that. As does my Dad.

Now my Mum will think a little more like me.

Just think we are a bit more realistic!

I read up a lot on the internet, he doesn't to know anything.. It doesn't mean he doesn't care, he loves both our Daughters v v much. He just doesn't want to know any of the not so nice things

Don't know if that makes it any sense at all, sorry for waffling!! just trying to say, no there is nothing wrong with feeling like this, I do, my Friend does, so we can't all be wrong!!!

[dizzy34]

Hi, i was very much like this when Harry was first dx. He was my fourth child, but dh first. Harrys dissabilities were devastating for us to accept. we knew from 5-6 mths old that he would be quadriplegic, registered blind, have 150+ seizures per day and that by the time he was 10mths old he would lose the ability to eat and drink. He is now 2yrs 6mths. For a long time my dh stayed strong for me cos he knew i was only just coping. He eventually broke down and now we try to let each other know how we are feeling regulary. DH still hasnt excepted the life expectancy that we have been given and to be honest i try not to think about it too much either. Like you, we know that Harry will never marry or go out with friends etc, and that does break my heart. i would love him to able to hold my hand, smile at me,say mum or run around with my nephew and it still hurts so much that it isnt going to happen. Sorry i have gone off the point and rambled, its just something with your post rang true for me.

love Denisexx

[Lillypond]

Oh dizzy, I'm so sorry to hear about Harry's problems and what you are going through. I just can't imagine the pain of a doctor talking about your DS's life expectancy. I'm so, so sorry.

Lots of love xxxx
{{{hugs}}}

[piffle]

Dizzy that is a very difficult prognosis to try to come to terms with honey pie much love out to you guys xxx
Like you dd is dp's 1st child and probably going to be his only child, I have an older son who is 11 who is not just NT but very academically gifted. While we expect dd to be mainstream I know dp finds it hard to deal with the fact that his child (planned and paid for) got the syndrome and the unplanned child I had while knocking around with a dodgy musician a decade ago while drinking and partying got the blessings you paray for.
This is what defines the trials of life I think, if you throw your hands up and accept everything happens for a reason and just take the one day at a time approach as things get really tough, somehow you get through it, and then you have to take the postitives and really really focus on those.

[dizzy34]

Hi piffle and lilypond,
i sometimes dont post on here because i dont feel like i fit in, not because of the other members but because Harry doesnt do anything and everyone else seems to be coping with such challenges etc. Dont get me wrong, we love him to bits and wouldnt swap him but he is not 'hard work' as such in his everyday routine. yes we have to resus him if he stops breathing and give him suction to clear his airways, he is fed by pump and cant do anything for himself, but he is an angel and doesnt complain at all.
its funny what you said about your family piffle, my eldest child is gifted educationaly, he is 16yr and a right pain in the a*, but he is clever, and Harry was planned and paid for with ivf from care in manchester. we may ahve another but i work full time as a social worker and my mum has harry so dont know if i could ask her to mind another. its lovely talking to you guys. What syndrome does your little ones have. Harrys is called malignant migrating partial epilepsy of infancy.he is apparently the 14th in the world.

[coppertop]

Lillypond - I think Anniebear's post is a pretty good description of how it was/is for us. I find it all seems to go in phases. In the early stages my dh was the one who insisted that ds1 was absolutely fine and would have no problems etc. He even hated the idea of ds1 being put on the waiting list for SALT. I hated the way that dh told professionals that in his opinion ds1 was just like any other child and we had many arguments because of it. At the time it left me feeling pretty much alone in dealing with things. Most people just seemed to see ds1 as a smiling toddler who was perhaps a bit shy. I saw him as a non-verbal child who lived almost entirely in a world of his own. Gradually dh began to start accepting that there was more to ds1's problems than just being a late talker and he (dh) began to get more involved in researching ASD and attending ds1's appointments whenever possible.

Ds1 is now 5 and a completely different child. I sometimes go through periods of getting a bit too complacent about things while dh worries more. Dh is at work while I'm a SAHM so I'm the one who sees the subtle differences between our 2 boys and NT children on a regular basis. Dh's days off work are often a real eye-opener for him. On a rare family day out he watched ds1 playing on the beach and commented "It's at times like this that you can see just how different and are to everyone else." Things have really changed since the early days of ds1's appointments, assessments and dx.

Dizzy - I had no idea about little Harry.

[piffle]

Dizzy Then I identify with you on a few levels!
My dd has Noonan Syndrome, not too badly in the whole scheme of things but with enough delays and crisis to make sure you never forget she's got it.
I am lucky again in that I belong to a really good email support group, although US based it is a life safer in times of worry.
Hardly anyone has heard of Noonans, when we go to the hospital for non NS related things, its like a 3 ring circus, come and look at the kid with this rare thingy here.
Makes me mad, but it falls on our hands to educate people about our children doesn't it?
We're the experts - incongruous but true!
Lilly how are you feeling today?

[Lillypond]

Dizzy - I understand what you mean about there not being much on here to relate to, but I would love to hear more about Harry. It must be very hard to find support for such a rare syndrome.

Coppertop - I might have the wrong person but is it your DH who has AS? Sorry to be nosey but just wondering if that might be why he resisted seeing your boys problems for a while. DP has a lot of autism on his side of the family and I wonder if he feels some kind of mis-placed guilt over DS's DX. Sorry if I'm mixing you up with someone else.

Piffle - I'm feeling much better today. Thank you.

Although I look forward to the weekend I find I really miss the routine of the school run. I'm busy during the week so I don't have time to sit and think about things.

[piffle]

Lilly isn't it amazing how much guilt there is to go around. As parents we cop the lot don't we...
I often wonder if men maybe feel more as they do not release as much as we can...
Big shoulders carry more burden maybe?
Hmm not sure I could describe my dp as a silent sufferer though...

[coppertop]

Lillypond - Yes, when ds1 was first having problems dh's usual comment was "There's nothing wrong with him. He's just like me!" It was as though saying something was wrong with ds1 was saying that there was something wrong with dh and he took it quite personally. The Paed who saw ds1 at his initial visit was great. She always 'tells it how it is' but without being too blunt. By this time dh had been doing some research about AS/ASD and had started to realise that a lot of the traits sounded very familiar. He mentioned the similarities between himself and ds1. At the end of the appointment the Paed asked us what we thought was wrong with ds1. She agreed that he was almost certainly autistic and told dh that IHO he has AS too.

There is a lot of AS/ASD on my side of the family too IMHO and I've found that it's my own family who find it the most difficult to accept. My youngest sister is great and will freely talk about it but the others tend to have a head-in-the-sand approach to it.

[madmummyof2]

Hi lillypond.
im new and i hope you dont mind me butting in. but i just wanted to say i absolutly know what you mean.

My son has non specific autistic spectrum behavioural disorder (but he is currently being assesed as he has turned 5 they may be able to narrow it dowm)

my ex ( the childrens dad) will not acknowledge that there is anything worng with him at all.
its so frustrating as they make out like you WANt there to be something wrong.

i have had to fight so hard for my son to get the help he needs. it took a year for him to get a statement of special educational needs so that he could actually function at school..i ma still fighting to try and get that help sorted so that he can actually participate.
i have had to take him to all his appointments, meetings and hear what everyone has thought.

it gets so draining and its so much harder when the one person you should be able to share these feelings with wont listen
i want to rant and rave that the education people are treating my son so badly and yet he just says well theres nothing wrong. he will be fine hes just a bit naughty.

it is soo difficult to wake up everyday knowing that you have to fight all over again and all the stresses and worries you have need to be kept inside.
i also know what its like when people say things like " oh he'll be a rugby player when he's older" or about him gettingn married and stuff.
i just want to scream at them well no actually he wont play sports as he cannot handle the rush of adrenalin and his balance isnt right due to the dyspraxia he has.
and as for marriage, i only hope he finds someone who is loving and strong enough to manage his constant mood swings.

it really does get me down sometimes as i do also feel guilty for feeling the way i do.

its not easy to admit but i ahve had the odd occasion when i have thought what my life would be like if i didn't have George.

i think every parent of a child with SN will probably admit feeling the same way at some pooint but thankfully these feelings are no where near how we truely feel.

good luck wiht everything hun

[Lillypond]

Coppertop - Sorry, I didn't see your reply at the time. I think DP is paranoid that because the anutism may have come from his side of the family that he must be autistic too. I really don't believe he is, but sometimes I think he's challenging me, almost daring me to accuse him of being autistic, and blame him for DS's DX.

Madmummy - Feel free to jump in on any thread. I know what you mean about people acting like you want your child to have SN. I admit that I did feel relieved when DS was DX'd, because it was the end of a battle (and the beginning of a new one WRT getting some help, maybe). That doesn't mean that I never wanted DS to have a normal life though. My mum has been very supportive since the DX but she has said things like 'Do you think if you hadn't read anything about autism before DS's assessment, you would have answered the Paed.s questions differently'. What she means is 'Did you already know what to say to make DS sound autistic, because you want some attention'. As far as I'm concerned we wouldn't have been for an asmt. if DS had been developing normally.

As for marriage, I have the same hopes as you, that DS will meet someone who is accepting of him, and that he will be happy. I don't feel it's impossible for that to happen, but I know that he will never be 'one of the lads'. If it helps DP to beleive that he will then I wish he'd say it to someone else or just keep it to himself.

Hope to see you around on the boards.