Out-of-sync with reality; Is anyone else?

[KatyMac]

I just feel so out-of-sync with everything & everyone atm

Very few people I meet (face-to-face) seems to 'get' me or my opinions

I feel very alone and misunderstood

I need to snap out of it

KatyMac, you are grieving. Seriously. I bet you have had thoughts along the lines of "What on earth are you worry about that for? My daughter is blind." If you haven't, you will have soon

You are knackered. You are stressed. When you have time to think, all you think about is your DD, how she is, how she will cope, how long will it last.

It is a harsh reality, but we all face it. Having a child with (even-a-possibly-or-even-probably-temporary) SN does put you in a different 'camp' from other people.

Chit chat here while you regroup. Some days you just can't face 'NT-world'. Other days you can.

Today is a not day I think

Not days are hard.

It comes in waves and some days are better than others. Keep posting. Everyone here understands how you feel.

When my boy was a baby he went blind after having his 3 month vaccination. Thankfully he regained his sight by about 12 months. (Never got a diagnosis). Anyway there were many many days when I couldn't work past a healthy baby without feeling sad. But there were also other days when I managed to hold it all together.

And now with his ASD and DD's dyslexia I guess I'm still like that. Some days fine - some days (for no reason) a total wreck.

I often feel like that, Katy. It is very early days for you and you are dealing with something out of your usual experience and something you couldn't plan or prepare for. It's only natural that it throws you right out of kilter at times.

I find it hard when things are rough with dd and I feel like there isn't anyone to talk to in RL.
I feel like my life is so totally different to people whose children are NT and it can be lonely.

As Indigo says, keep talking on here -we all understand and we can reassure each other that we are not going insane (yet!)

Yes waves

Today is rough

Oh Kate, you don't need to snap out of anything. You need to give yourself time and cut yourself a little slack. Your world has been turned upside down and you don't know what the future holds. Of course you're feeling at odds with the world.

It must be very hard at work listening to the niggles of parents and then trying to put that into context alongside what's going on in your personal life. In fact that is a big part of why I gave notice to some pretty vile parents over Easter. I just didn't have it in me to deal with their demands.

You're not alone or misunderstood here because there are plenty of people here who know what it is like to have the rug pulled from under them.

Hopefully tomorrow won't be a 'not' day but if it is we're all here.

Have been reading your posts KatyMac and it sounds like you and you're family are facing so much grief and loss with your dd's blindness and there is so much uncertainty about the future.. Really hope for you that a resolution is found at some point as it sounds so hard for you all..

Life in our SN world is so stressful that there's often no proper time to know what what to do with all that..

I can really relate to your post though..

Yesterday an old friend and her 3 NT kids came round as well as her neice who was cutting the kids hair.. ( dd been barred from our old hairdresser salon as she's too disruptive but that's another story.. )

During their visit and after they left I realised that I couldn't have a conversation with her properly. I kept zoning out and having to pretend I knew what she was talking about.

She's a lovely person but just doesn't get what our lives are about and I couldn't relate to her at all. To be honest I couldn't give a shit about all she was telling me at the moment..

Feel bad saying that but it's true..

So when one of those waves crashes over you it's very isolating and yet we can all come on here and know that others will get it..

I'm thankful for that..

Thinking of you and hoping tomorrow is an easier day for you..

Thanks everyone - who knows what today will bring?

hope its a better day and your on sharp learning curve thought I was used to ds3 sn and then bam ds2 throws me a curve with crohns so its suddernly having to find your feet that does not help

I'd just say, wen you have a good day do try to remember that people probably don't know what to say either. I know that unless something awful happened I will never understand what you are going through, I can only imagine dimly. So if I met you I might witter on about trivia, but that wouldn't mean I didn't care.

Also I still think about some Mums I met when mine were tiny. The Mum now on her second relationship who had most of her stomach removed when her babies were 2 and 4, and somehow went on to have another one.

Or the single Mum with 2 boys, one with severe cerebral palsy. They are both heroines to me, and so are you. (Although I do know being a heroine means just dealing with what life chucks at you.)

I hope you have a better day, and the sun shines for you.

I don't know quite what to say to that mummytime I think I am an argumentative stroppy cow.........

Yes it is the suddenness that throws you

Guess what today isn't really better

Give yourself time very early days ,understand it's all been suddernly for you and dd sadly life as it was has changed. And has changed you and dd.

But post away on here hand holding virtual tea and or wine by the case is supplied

Ds has very little speech noun sound mostly yes it is likely it is caused by muscle and nerve damage and yes I do agree come to terms with but like you am pushing various Drs to make sure it us nothing else that can be cured/fixed .I owe it to him to be sure have excluded other reasons .

Don't give up most parents will agree with you

Like the others I know how you feel katymac, Weve been trying to get a diagnosis since feb for DS4 and are still none the wiser (although his consultant is trying) Each test thats done we just keep our fingers crossed that it could be the answer.
One of the worst things for me is as DS is only 13months and a main problem with him is severe global developemntal delay so because hes so young friends & family usually give the 'oh im sure its just slow developement and he will be fine in a few months' its so frustrating! Its as if they dont listen (but it probably more that they dont understand).
Its so hard sometimes it feels like people just dont care.
Ive also had the same situation as DJAngel and now dont really see that particular friend any more as she didnt seem to care about ds's problems and I didnt really want to be listening to her 'problems' and also got the impression that she'd rather not see us anyway. Her dh has a sn brother that shes always slagged off/ taken the p** out of and I kept wondering if she was doing the same about my ds. So in my opinion we are better off this way.

Katymac, give yourself time, lots of time.

As the others sat, it is a sort of grief process and you may well have the anger and bewilderment and overwhelming sadness but eventually there will be a way of coping.

Maybe keeping a diary might help? Its a way of pouring out feelings and somehow validating them.

You may also be able to access talking therapy with your GP. This is good for some people (not me, I just dreaded going in there and crying for the whole session!)

Just keep going.

Hi Katymac I totally get you-I'm 41 have one DD who is 11 and I have had ME for 8 years.Weird huh?

I'm sort of answering both your threads here.I guess you know the stats that children who have a parent with ME are slightly more likely to develop ME themselves.

If it is of any help my version of ME [although not affecting my sight]is very neurological,to the extent I was told that it could not be ME,MS maybe or all in the mindI'm not totally up on your DD's difficulties but you really should have been offered an MRI scan and I would consider as other posters have said not leaving the DR's until you have that urgent referal,if you have to threaten legal action that may help.

Something I found to be really helpful was 'The Lightening Process'therapy but not therapy iykwim,designed to help overcome ME.I did a 2 day course a couple of years ago and it was fantastic-I still have ME but it enabled me to recognise triggers,reprogrammed my language and manage the condition,I use the process on my DD when I feel she is talking herself into a health issue.-if you are interested I could look up the details.

It's really tough to fight your DD's corner whilst dealing with ME,especially in your no win situation,dammed if you take either course of action.

Look after yourself,you are under a huge amount of stress.I will be thinking of you.

Thanks everyone - today has been odd

But I took sometime for myself today & that was good

I also think some people realised how stressed & unhappy I have been & I had a long (2hr plus) talk with my mum who has been wavering back & forth & she understands where I am atm