Anyone else having a bad day?

[PamT]

I woke up to hear DD yelling at 5am with an extremely stinky nappy - no going back to sleep there. So I went downstairs, switched the computer on and received 3 e-mails all containing the Klez virus, fortunately dealt with by Norton's Anti Virus before they did any damage but it took a bit of sorting out and checking. DD was in a foul mood and wouldn't eat breakfast so most of it went on the floor.

Yesterday wasn't much better, I was woken by the neighbour's car alarm going off at 5.30am and managed to get a stone chip in the car windscreen on the way to playgroup, not a bad one but right in the line of vision so the screen will have to be replaced and unfortunately isn't covered on the insurance.

Grrrrrrrrrrrr! Hope tomorrow is better.

Just a quick update - made a concerted effort to make as big a pain of myself as I could today, so called all the doctors I could think of involved with ds to get the results for me. Finally found out that there is a blood test available to test for the inherited form, but that it is very specialised and he would have to go to St georges in Tooting for it. This now seems irrelevant, as I finally got a call from his old paediatrician responding to my wails of frustration, who told me the results of his mri. Basically the second opinion discovered abnormalities around the ventricles (the 4 spaces in his brain that collect excess fluid to drain away), which is consistent with a lack of blood flow at some time during my pregnancy while he was still developing. They call it an insult to the brain. So as they have found white matter it is definitely cp and not the inherited spastic diplegia. It's a relief knowing, but I must admit to feeling slightly tearful, even though it is the best possible result. It's probably not helping that dh has to go into hospital tomorrow for a small op, and dd1 is on crutches having torn a thigh muscle. Still at least we know now.

sorry too lou

thinking of you too Lou

Hi Lou33, I know just how you are feeling at the mo, my DD has damage around the verticles too. I am glad that your son doesn't have HSP but its hard to say that I am glad that your son only has CP. I am really feeling for you at the moment and if you want to chat, let me know.

Oh so sorry Lou. Not knowing what your child has is really tough isn't it, but at least 'fighting the system' gives you something to get angry and tough about. But it must be a kind of let down now the initial fight is over and you have reached this kind of full stop. I hope you find the energy for the next 'battle' and that the operation isn't too exhausting for you.
Remember to take care of yourself.

oh lou, it's terrible that with all the problems you're having to cope with it's added to by the health professionals being uncooperative

Hugs, Lou

Thinking of you Lou, am 'pleased' its only cp, yeah my ds has a brain insult too which caused the cp. How's your ds doing right now?

I just wanted to send you my best wishes, Lou33. It seems that you've had the 'least bad result' and it must hard to come to terms with. Look after yourself as well as your family and I hope the other problems resolve themselves pdq.

Thanks everyone for your messages, it always amazes me how you all rally round when one of us needs it. I guess there is so much going on at the moment, it just feels a bit overwhelming, so it's great to read how you are supporting me from afar!

Ds is an amazing little boy, I don't think he could get any sweeter. He has a wonderful personality and a great sense of humour,although painfully shy with strangers (but I have to admit to kind of liking it when he buries his face in my shoulder!) so I hope he is able to keep this as he grows older, because it will stand him in good stead.

Can I ask you Mabs, Mieow, and anyone else with special needs kids, if you found the most unlikely people "backing off" when they found out about your children? I say this because a v good friend who I have known 15 years (dh even longer), and mil seem to almost be ignoring ds disabilities to the stage of not mentioning him at all. I sent both a picture of ds with his new standing frame, because he looked so proud of himself, and mil sent a vague woolly reply, skirting around the issue, and the friend has not replied at all. When she does he is never mentioned, eveything is kept light and silly. I am tempted to mail her and ask her outright. My theory is that until they see ds with his equipment they can kid themselves that he is a "normal" child with parents that are probably just slightly hysterical, but now they have seen him as we do then they feel maybe repulsed by him and are ashamed to be feeling that way, so they just don't mention him. Call me paranoid, but I have had others who have closed communication with me since it appeared ds was not developing as he should.Oh well I suppose I should assume these people are not good enough to be involved with us anyway if that is their attitude!

Dh has gone now for his op, and I shall be at the hospital tomorrow with dd to review her thigh, as well as fitting in the school play of dd2! Hopefully things will slow down soon. Thanks for listening everyone.

Lou I'm sure these people mean well, but they really don't know what to say to you. I guess its quite difficult as they don't want to put their foot in it. I mean we all know what to say to mothers about their child, 'ooh hasn't he grown', 'isn't he handsome' etc etc But the first thing they must see is his disbaility and they can't get any further. Especially with the gaffes its easy to make, you know, should they draw attention to your sons problems, should they ignore them. It gets awkward I think,maybe you should give them all a pep talk about how you really don't mind talking about your son's problems but at the same time you want them to see him for himself, and look past them etc.
Does thta make any sense?

It does Lil, but these are people I have known since 1988, so I would have thought they would know me and how they could react. I would rather they just said what they thought tbh and get it off their chests so to speak, because otherwise it becomes the only thing they can think about and find themselves unable to talk. A bit like Austin Powers in Goldmember(?) when he notices the mole on the agent's face, it's all he can see, and anything he says has the word mole in the sentence! Or Basil Fawlty and don't mention the war!

If you "would rather they just said what they thought tbh and get it off their chests so to speak" then tell them that Say that you think they must be feeling awkward about your son's disabilities but you'd really like to talk frankly about it with them to help them understand and to become comfortable with it.

A friend of DS1 is deaf and having seen her and her mother regularly through all the diagnosis/misdiagnosis and surgery to put in cochlear implants, I feel much more comfortable talking about it than if I'd not understood all the things they'd been through. The mother was very open about everything and we've asked lots of questions to help us understand. I do feel awkward at times as DS1 and this girl are the same age. DS1 is so vocal and ahead with his language and is, in my mind, a reminder to the girl's mother of what might have been.

Anyway, have a chat with these people and help them understand and feel more comfortable talking about your son's disabilities and eventually they'll learn to see past them to the lovely little boy he obviously is. It will also help them understnad others in simlar situations. Most people do not come across disability "close to home" like this.

Soupdragon can read minds! I emailed my friend about 2 hours ago and asked her if she finds ds's condition a problem. I will wait and see what she says. Unfortunately it is not so simple with mil, as we have found out in the past. Any question she does not like the tone of is met with telling us we are bullies and manipulative, and threats never to see the grandchildren again. We have called her bluff on this before, but dh and her have had a fragile relationship over the years, and it's been slowly mending for the last 12 months. If their relationship is to be compromised again it will have to be dh who decides that, so I can only wait and see what happens.

If only I could read the minds of my children too...

With MIL you could go more gently and ask her if there's anything she'd like to know about DSs condition and that you're happy to help her understand. Say you realise she may feel awkward about it but you're more than happy for her to ask anything she likes and that you don't want her to feel left out... blah blah blah. Without knowing your MIL, I would hope that if you put it in a neutral way so she doesn't feel she's being accused of anything, you wouldn't compromise the shaky relationship you all have with her.

Probably easier said than done!

Oh, Lou, you are having a lot to cope with at the moment. Hope dh's surgery and dd's thigh both lead to quick recoveries.
Could not agree more with you about people whom you expect to understand actually letting you down in extremis. We have found some good, long-standing friends (and family) simply won't mention our stillborn son Tom and are not contacting us as often as before. We had a really quite upsetting card this morning wishing us a "very merry Christmas" from one of them. Yeah, right. But other friends, in surprising quarters, (and Mumsnetters) help you get through it.
Good to know that you have a firm diagnosis for your son and that it is not inherited spastic diplegia. Cyberhugs to you all.

Poor you, Lou, sorry you are having such a tough time. It's a relief you managed to get a firm confirmation that it's not ISD at last and well done for all the chasing up.

I definitely sympathise over the problems with others not wanting to mention disabilities. This seems to be the rule rather than the exception, in my case. Dh suggested like Soupdragon that I needed to make sure that people knew I didn't mind talking about it, otherwise they would shy away for fear of upsetting me or putting their foot in it. It doesn't seem to be working yet, though

Take care, and hope dh and dd are up and running again soon!

Lou, it was interesting reading your post about how your family and friends cope with the disability. My oldest brother (oldest of my younger borthers IYSWIM) has Aspergers Syndrome, a type of autism, learning difficulties, epelepsy, diabetes, and has a lot of emotional problems including some sexual problems (he is now 26). My Mum has mentioned often how a lot of her friends have backed off from him for years, asking about the reat of us (I'm 1 of 6) but missing him out, not interested in how he was doing at his special school or what his current care arrangemants are (given his sexual problems he cant live outside an institution). She feel like she has these other children but her oldest son doesn't exist, even though he has some marvellous acheivments to his name for the problems he has, including qualifying for the scottish swimming team for the commonwealth paralympics! For years I have watched her suffer over this (the rest of the family are so proud of him, and despite his problems he is a marvellous uncle to my children) and now she jusr says 'Oh, and R is doing such-and-such' to those who dont ask. It is so rude of people to ignore a disabled child, of whatever age!
Sounds like you are a brilliant Mummy, to be so proud of all his achievments. Just boast abou them, he is doing so much more than his able-bodied peers. Just like my brother achieved so much more than his able-minded peers.
Thanks for sharing all this with us. It has been a real education to me as a friend has a ds with CP and doesn't talk about it much 0 UI know I've not said much but it has been incredibly useful to me to read it all, so thankyou. And all the best to you and your family!

I didn't lose any friends because of DS's and DD's CP but some people avoid the subject. You'll proberly find that friend and MIL are worried about upsetting you more than everything I think that people think you'll burst into tears if they mention it.

To be blunt, I think if people can't accept my children's disablities, then s*d them......... My family and DH's family all see DS and DD for the kids they are, not the disablities, in fact some of them even tend to forget that they can't do some things LOL.......

Lou, has anyone givin you an indication of how when the CP brain injury happened? It is possible to date it very accurately from the MRI. Could it have been a birth injury?

Soupdragon,Thanks for your advice. Mil has always been kept as involved as she wants to be, we have pointed her in the right direction for info etc, but we have always had to tread carefully with her. It's much too complicated to go into though, your ears would start bleeding. Unfortunately dh and I agree that the only one of our children she is reall interested in is our oldest, dd1. She makes attempts at showing otherwise but it is pretty clear to us. Luckily 2 of them are too young to realise, but dd2 is starting to ask questions.

Marina it's very painful isn't it when someone you love is supposed not to exist anymore? I have a very close friend, who lost her daughter when she was 5 months old, and although I never got the chance to meet her because I was out of the country, I know how much she and her dh must have been devastated. I have always made a point of not steering away from the subject of her daughter, because she deserves to be remembered. I think it is the same for children with special needs, often people treat the situation like someone has died, and expects it all to be put away.

Caroline, we have always been very upfront and honest about ds2 and his problems, and are willing to talk about him and his disablilities if anyone wants to. Unfortunately as time goes on and more people find out their reactions can be odd to say the least. I told who I thought was a good friend of mine about 2 months ago about his possible ISD and she said "Oh....Do you know I am having golf lessons now?" ! So I have decided that that is a friend I can do without.

I agree with you mieow about sod them if they can't handle it, there will be nothing to gain from their friendship in the long run.

Glad I could help you in some way susan!

Cos, the damage to the ventricles is consistent with a lack of blood flow to the brain on one or more occasions during his development in my womb, so it wouldn't be a birth injury. He would have been unlikely to suffer a lack of oxygen at birth anyway because my labour was only 22 mins long! Apparently it is a common type of insult seen in very prem babies, although ds was only 4 weeks early. I do have an idea of when it could have happened but tbh I don't think it will make any difference , apart from making me angry again.

I hope I have answered you all, sorry if I have missed anyone out!

On a brighter side I had a reply from my friend, who was mortified that she had given me that impression, although she admitted that was how she probably came across unintentionally by not replying. So that's all sorted thank goodness. I need all the friends I have!

Lou - I'm pleased your friend has replied and all seems ok. I have MAJOR problems with MIL/FIL re the disability. MIL takes the 'if i ignore it it'll go away' and 'he looks alright to me ' attitude, and FIL has a tendency to cry when its mentioned!! i actually got a really useful leaflet from SCOPE about 3 months ago. It was for people who had found out that someone close to them had cp. I took it over and left it on their table 'accidently'. They never mentioned it but perhaps their attitude has been a bit better lately..........

Ds' damage was done at around 20 wks when i had a pv bleed they reckon. By the time he was delivered at 29 wks it was already there. Most of the time I take the 'sod em' attitude like Mieow, but just sometimes it gets to me.
Take care, sounds like you're being really strong at the moment, and ds sounds like he's making progress.

I know that you can tell when the damage by the appearance of the white matter. DS's is very smooth and contained, looks like a white ball on four areas, DD's is very ragged and spikey, looks like a splat of paint around her verticles. DS's damaged happened in pregnancy, proberly when he stopped growing between 28-32 weeks. DD's happened after birth likely when she was is Special Care and was very ill.