Writing a short article about my experiences around the time of my DDs diagnosis(and birth!) How to be open but not upset or scare new parents?

[used2bthin]

Sorry for the muddled sounding title, couldn't think how to word it. I have recently become more involved with the support group for my Dds condition which is great. I need to write a short peice introducing myself and talking about my experiences for new parents. I am fine with the bit where I say how lovely and happy she is but am a bit worried about writing about the first year or so because it was very hard. I need to say something about it being hardand how I felt but also need to not frighten people whose baby may be very small still. Any advise on how to word it? What would you have liked to hear about if your child had just been diagnosed?

I think i'dwant to hear honesty. Something about whilst it was ahrd for a while that phase did pass. Becuase it does- a mix of getting used to, acceptance and the end of the bereavement process.

I really loved those stories that told the truth about how hard it was in the early days; I couldn't get enough of them because they made me feel I wasn't alone. I'm afraid there comes a time when most parents have to face their possible future, and the fact that you seem to be having a more positive time of it now should be heartening to most. What I really hated was those evangelical 'God sent me an angel' stories - nauseating and alienating.

I agree. Honest approach for me too. Even if it sounds bad, the fact you can write about it now means things are better.

When I look back to the early e-mails I sent out about the very dark times after DSs birth, I can manage to laugh. On day 5 of his life they told us he would die. When he didn't and things improved, I referred to him as a 'stubborn little mule', a 'bleedin' drama queen' and a 'lazy little oik'.
Most of the e-mails back said 'just like his Mum then' . I hope that the tone of my e-mails, tho depressingly honest, allowed people to respond that way. They make me smirk now, so I hope they brought a smile to the people on the receiving end - not that I gave a toss at the time!

What I'm trying to say is - it's crap and it's hard work - there's no point dressing it up as anything else. But if you already have hope and try to find the tiniest hint of positivity - your piece will be fine, without ANY effort at all.

PS - I hate all that God has blessed me shit and Special Parents for special children makes me vom too. We're all just parents who cope as best we can.

Feelingbitbetter am with you there. Supernanny in her baby book talks about special mummies for special babies and it makes me but not with envy.

And yes, we have been blessed, my son's name means God's gift and that it what he is, but not because he is a 'special' little boy.

I found it weirdly comforting to hear bad news stories and know that baby and parents survived, that there was life after all this. It gave me a glimmer of hope that we would somehow cope.

and then things turned out much better than feared

I do the newsletter for the charity concerned with Ds 1's condition and historically we have always had 'happy' family stories. Since I took over as 'editor' I have been told by other parents, and sometimes those with several years more experience of the condition, that we need more 'misery' stories!! "our kids are NOT 'Angels', they can be bloody monsters" I was told, "and new dx families need to know this". I do think that most people appreciate honesty and maybe a little insight into their immediate future, as long as its told in a positive way and is not going to make people feel suicidal! (Dh has 2 children with CF who died aged 6 and 13, he is sat next to me laughing and agreeing with everything.)

Thanks for all of your responses. I'm actually glad you all think honesty is best. Monstermansmum our support group tends to tell the positive stuff too and there is a big focus on not alarming new parents ut sometimes the feeling that people aren't telling you the worst bits is worse.

Actually just hearing some of your experiences has made me think back and I loved the stories about when it had been really bad too because I felt like they were like the situation I was in if that makes sense. If they were too positive I got scared that Dd was a worse case than others, or that I wasn't coping well enough. Agree about wanting to hear the cases of it being really bad then the child surviving too.

Feelingbitbetter I still have my early contact with people from the support group I am too scared to re read them but I will before I write this. I still find it really really hard to talk about or even think about so it will be difficult but t is for a good cause and might do me good as well? And as you say, I can now say we came through that and it has got easier. I am having a bad week so need to feel a bit more positive really before I start but maybe I need to also say somewhere in it that I (and DD) still have days when it feels like the most terrible curse (perhaps not in those exact words ;-) ) but that those days get further and further apart and easier to deal with.

I feel eotional ust thinkng about it, beter have glass of wine ready or nice treat planned for after I think, like DLA forms!

Honesty all the way. In DD's first year all I ever seemed to do was try (and fail) to breastfeed, visit hospitals, and meet health professionals. I never met any parents. And, apart from Mn, much that I sourced on the internet was sentimental twaddle (as mentioned in previous posts) or not relevant to DD's issues. I just wanted to find something that reflected my reality and didn't insult my intelligence.

If you're writing for a specific site, that's exactly where newly diagnosed parents will be heading, so I say go for it, and tell people exactly how it really was for you. You can always write a disclaimer as your intro paragraph.

Your first year sounds a bit like mine Arabica,especially the media bit!Yes it is for the support group it will be forwarded to parents of newly diagnosed babies. I have now gotsome good ideas, I'mglad you all feel I should be honest. Just need to write the thing now! Keep saying,tomorrow!

I'm like that with my deadlines, no wonder my career isn't as wonderful as it should be!

Ha ha yes me too! The worst thing is I keep buying myself the nice treat for after its done, then eating it without doing the work.I will be a stone heavier by the time I actually finish!

Agree with writing the cold, hard truth.

I felt genuine grief, like a bereavement, and all I kept being fobbed off with was all the holland/angel nonsense which made me cry harder with grief, guilt and rage because I wasn't able to embrace the special gift I had been given. (or punctuate either, it is late. Alcohol has been consumed)

I have finally written it. I panicked about DD reading it when she is older but I think I have done ok. Its only a first draft and sounds a bit cold and detatched but I think thats because I hate talking about the first few weeks so probably have detatched myself a it. I genuinely don't remember all of it which is probably just as well! I hope parents will read it and be able to identify with some of it and also feel more hopeful as I have said that it gets easier. Which it does. Sometimes its still really hard but definately easier than it was!

It has got easier for me is what I meant. DD on less meds now and also a lot of it has just become routine.

Its nice to know that other people had a hard first few years - there is no support group for our dd's condition so I too never met any parents early on. Put your last line from your 15.16pm post into the script. Captures it all.

Good idea Goodlife, I have been looking for a way to end it on a positive note, I have always been rubbish at summing up but seem to have done it by accident there! Must be hard not having a support group. Dds condition is fairly rare so ours is a small one and we don't meet often but I have been so lucky to have it. I was on another thread last night aout difficult births/early weeks and thinking just now how somehow it makes me feel better knowing it wasn't just me. Not that I want others to go through it, I just get this anxiety, bordering guilt about what DD has had to go through while others were upset by their babies heel prick or vaccinations or whatever. Not saying that those things weren't difficult to see, just that DD has had to endure many, many horrible procedures and I feel that her first experiences of the world were sometimes very scary for her as well as me. Blimey get the tissues out, I thought I was doing ok!

Sorry! I find it still goes up and down, even after years of SN mother life. Even the oxygen mask in Bolt last week made me feel wobbly. Its a cartoon for heavens sake!

No it was me, I knew I wouldn't get away with writing the article without feeling a bit weepy. I generally avoid talking about the start of DDs life, especially in certain situations (toddler group seems to be the worst place). In fact I don't even think about it if I can avoid it. And yes I can be doing something completely random like watching a film then something reminds me of something, its almost like a flash back sometimes. Not nice.

Toddler groups! I can remember going to a toddler group when we'd just moved here, and it was awful, all these women who all knew each other sitting round the edge of the room staring at me and my obviously disabled unable dribbling daughter. I went a couple of times then never again. Then in the snow a couple of weeks ago a woman I met sledging said she remembered me from that group and said yes how cliquey it was. Apparently she left too! Another bad moment was stepping into the special needs pre-school. Realising that this whole world existed and I didn't want to be part of it. Yet I remember getting all worked up about approaching the "normal" preschool to ask if they'd have dd for a session, and they were superb - couldn't see what on earth the bother was, of course she can come etc etc.

I am just at the pre school stage with Dd, I'd like her to go for one or two sessions a week, partly in the hope that it will help with her speech delay. DDs condition only affects her health (the speech thing is unrelated) so she kind of seems to fall between services at times, I had problems with one setting who wren't happy with the medical care she may need. It may be that I stay near by at this stage so that they don't have to worry about that side of her.

I agree toddler groups can be the worst places, I have had my lonliest moments at them especially when Dd was smaller. Lots of them are really cliquey and full of all sorts of "politics" about who has and hasn't put their name down for whatever. I actaully prefer family centres in a way, it always feels like more equal ground!

You can "belong" to SN and "normal". My DD is now 6 and has split schooling mainstream and Special. Took quite a lot of hasssle re statement but well worth it. You shouldn't have to hang around pre-school to look after your child. Pre-schools have access to funding for special one-to one carers to enable the child to access education. Otherwise its discriminatory.

Thank you yes I am hoping they will agree to having training from the specialist nurse but had one place being a bit difficult about it and haven't looked since up until now. Its my job for this week though to go and look at places and try and get somewhere sorted for after easter if at all possible.

Thanks Tclanger

Each area has an Education Authority SENCO for playgroups, maybe yours can recommend a group who would be appropriate for your child. The group my dd went to got referrals of other sn kids after she left because they were so great, Good Luck!

I spoke to someone who wasn't much help in that she mostly said see which ones you like. But she said that they can't not take her on the grounds of her condition. They can, unfortuantely , refuse to give her injection which would mean that I had to hang around or not send her there. Hopefully though they will be ok with it, I think a good place would be.