My mixed emotions as ds's first birthday approaches

[emkana]

Seb is going to be one year old in three weeks' time. I am going through a range of emotions - pride because he is so wonderful in so many ways, gratefulness because things have turned out so well after the horrors of the pregnancy, but on the other hand also sadness and worry. I'm sad because with all the worrying I didn't enjoy his babyhood as much as I could have, and now he is very nearly not a baby anymore. And I'm worried because his chest is still giving him so much trouble, and we don't know why, and his development is more and more falling behind other babies his age, and we don't know why, and he hasn't really made any significant developmental steps in the last four months or so. He still can't sit unsupported, he can't clap his hands, he can't crawl, he doesn't say any words...
It would be lovely to have a tiny little look into the future to see if everything turns out all right in the end...

ah yes I remember I used to say a lot "I'd like to fast forward a year and see that it's all ok".

Are you still having regular input. I know the NHS have been fairly useless- if he's behind in his development have you seen a developmental paed? If not get yourself on a waiting list- the waits are long. Is your GP or HV any good?

Do enjoy his birthday though. We recently had ds1's 8th birthday and usually I go basketcase around them, my counsellor told me to write a list of all the things he'd achieved in the last year (we'd had a good year) and that helped. Could you in some way remind yourself of your fears a year ago and see how far you've come in that way.

He's absolutely gorgeous.

Thanks gess.

The developmental thing is a bit tricky. The HV did a detailed 9 month check and at that I was feeling very gung-ho and optimistic and was a bit deluded. So I said he could do things which it now turns out were a one-off or fluke...

I'm thinking I should probably phone her and discuss it with her shouldn't I? She is v. nice.

We do see the community paed as well who looks at development, but again we saw him at 9 months old and he didn't seem concerned. But seeing ds now in comparison to other babies his age (and I know a lot of them, everybody had babies this time last year!) the widening gap is undeniable.

Yes phone her. I did the same with ds1. He was recorded as having over 50 words- because he had said 50 words- it's just he only said them once or a few times before stopping.

I will, but am dreading it.

Feel a bit stupid after that nine month check.

Oh Emkana, you shouldn't feel stupid I'm sure you HV will be very understanding. At 9months baby's vary greatly, so perhaps any delays were not so evident. Give her a call.
A crystal ball would be great even now 4 years on.. At a year d2 was just rolling over, certainly not sitting crawling, speaking or making any noises at all. The gaps in delays seemed to widen for a while but then he's played catch up & the gap is not so huge anymore.
I hope you all enjoy Sebs' big day!

Thanks mymatemax, that's encouraging to hear.

Do you mind if I ask what diagnosis your ds has?

emkana - i felt just like you did. dd1 wouldn't sit, crawl, chew anything, didn't have pincer grip, it was all so upsetting. she couldn't even be put on her front as she would cry (she never cried for anything: food, cuddles, needing to sleep, waking up. all the normal baby things). she wouldn't attempt to stand and she failed both her baby check ups (she's now 3 and i never took her to the 18 month check up as i knew she'd fail and we already had our local cdc and portage worker working with us).

on her birthday i was in tears. i felt so guilty about missing out on her first year. everyone said that first year is special but to me i was struggling to love my child as we almost lost her soon after she was born and we knew just after her 1st birthday she was going to have another major heart op and i was scared of losing her again. i was also very disapointed that she wasn't the child i thought i was going to have.

i know not everyone would see it the way i did, i should have been so happy she survived, she went through so much to be here but it was so hard to adjust. she's 3 now. i love her so much and i now have another child, dd2. dd1 now crawls, she doesn't walk and overall she has the abilities of a 12-18 month old. to me having dd2 helped me accept things better, i know this is probably what most people wouldn't do but i was desperate for the baby i had dreamed about.

i really hope you find some way of coming to terms more with the way things are. i think over time you can start to accept things better.

Hope it's OK to post in here but I just wanted to say Hi and your thread title took me back to just before ds1 and 2's first birthday - they're both NT but I was really shaken by how emotional I felt as they each turned one. Huge flashbacks to what were very traumatic labours for dp and me (we both had emergency sections after very long labours) and a feeling that it wasn't a celebration at all, but a horrible reminder of the struggle of having them and the knackering and stressful period which followed.

Hope you get through the next few weeks OK and I agree about getting in touch with your HV - being pro-active and making sure your ds is assessed will hopefully help.

Emkana,

That could have been me that posted your note only 6 months ago when my ds turned 1....I was absolutly dreading it! I was sad that all I could truely remember about my ds's first year was hospital appts and tests and him being poked and prodded, I felt awful that I hadn't 'enjoyed' his first year and my first year being a mummy.

I planned a party for close friends and family and it was a fab day- I cant lie and say that I didnt spend the whole day thinking about what my little boy should have been doing at his first party but he sat in his chair wacthing everything going on and it wasnt that bad.

I dont really thinkin about the crytal ball so much these days maybe its because my son has made alot of progress the last few months and I find myself enjoying him more and more.

I love Gess's idea about writing a list of all the accomplishments, things that can sometimes get over shoadowed by yet another dx or a troublesome time with yur dc's health.

I can totally understand where your coming from but I hope you and your ds have a wonderful first birthday

Thanks everybody.

I can't write much, feeling v. emotional tonight and also fed up with dh.

But I appreciate all your posts, very much.

Just looked at active convos list and you know what I find really hard? Those thread titles for the postnatal club like "July 2006 - now well and truly cruising" or similar.

Ds is June 2006...

Its tough so bloody tough.........!!!wish I could give you a huge squeeze.

Emkana,Of course I don't mind he has global delay, mild CP, plus some behavioral/anxiety/OCD problems so far undx'd but similar to autism.
He was born at 28wks, the first year was very difficult for me emotionally,as others have said the relief that he made it yet sadness when comparing him to other babies & looking back now I think we were probabily in shock (don't mean to sound dramatic).
I can remember hating his 1st birthday, a few friends & family popped in ds2 just wasn't interested. I even took toys back to the shop & swapped them for clothes!
His 2nd bithday however.. he was sitting up & taking an interest & by then we were able to see the improvement in him & we were more comfortable with him IYKWIM, he was still way behind his peers but so what he was smiling & happy & mostly healthy Oh & I'd stopped as much as possible having contact with other babies his age. He is 4.5 now & really has done so much better than we thought possible as he approached his first birthday.
Take care xx

Thats such and encouraging post my matemax, Im hoping that by my sons 2nd birthday h will be able to sit unaided and take more of an interest......! Im looking forward to it

thanks for your kindness, lourobert.

mymatemax, that really is very encouraging, well done to your ds!

emkana,

I am new so I'm afraid I don't know your history.

My DS is 3 this Aug (also called Seb) for his 1st I arranged a party, then got cold feet and canx it the week before - I just couldn't bear to see him with children his own age. He couldn't clap, point, wave, crawl etc just like your lo.

I felt I was in mourning for the little boy I should have had and guilty at the same time that he'd nearly died a few times in his early days and I should just be grateful.

Last year his SN toddler group had a cake and sung HB to him on the last day, and I just cried - because they cared enough to do that and because I felt guilty that I had never bothered as he would not notice either way.

He will be 3 this year and last week I asked my DH if we could have a big party with Jo Jingles (music fun class)and all his friends! He walks now and can say a few words - two things I thought would never happen - and def know what is going on, he may not understand birthday but will be aware that it is not an ordinary day.

Hang in there, I'm sure things will turn out ok.

Hi Emkana

I don't know what to say that hasn't already been said by others already. I just wanted to add my support, and agree with the findiong these moments hard and wincing at other thread titles etc. And I too very much wish for a glimpse into that crystal ball sometimes. All I can say is that I have had to learn to stop lookign at what Lottie still can't do at her age and try and focus on the good, but it's hard.

We had a book sent home from school last week where the child has to write about what they did witht eh school teddy bear that night. All the other children who had used the book so far and written the evenings events out themselves and had all drawn a picture. It hurts that I had to write it myself, undictaed and draw a pic that Lottie then randomly scribbled all over. But I tried to celebrate the fact that she held the pen quite well! It's hard though.

Much love - TC xx

Dammit every time I read one of you lovely people's kind posts I get tears in my eyes.

It helps to know that there are people out there who know how it feels. Thank you all.

Hello chimes in with a bit more of the same!
I felt exactly like this also. DD is 2 now and yes, the gap between her and her NT peers is widening. However, I think I am a bit more used to it so this second bday wasn't quite as hard as last years. It still made me sad to see kids a year younger toddling about, whilst she lost her balance sitting and knocked her head on the floor

I think last year, it was just much rawer and I was doing that whole 'this time last year' and going over the birth / nicu traumas.

My only advice would be to plan something nice / special for the day and only surround yrself with people you feel comfortable around. That way, if you want a little cry, you can. Also if seeing NT kids will upset you more, avoid 'em for the day. Do whatever is best for you and yr immediate family.

I hope it goes well x

I have to say that I dont put myself in the company of children the same age as my ds as it just hurts so much.....! At first I felt awful about this as it meant not seeing a friends son, bbut I learnt that its ok and why put myself through anything pain that isnt necessary......!

Its ok now (my son is 18 months) and has been dx for a litle over a year that Im enjoying being Louis mummy. I took him the supermarket recently and felt so proud pusing him round and not dreading all the looks and stares we would get....Id like all of a sudden Im celebrating my sons difference and really enjoying him.

I know Ive repeated what others have said but I suppose reading the orignal post has helped me realise how far im come on this journey....!

Thankyou all.

Hi emkana,

I don't really have anything to add, except to say I understand totally where you are coming from. When dd was one, we were aware that she had significant disabilities, but we had no diagnosis so no-one was able to give us even a slight idea of what the future held. Two years on from then and she still struggles to learn even the simplest thing, but oh she makes me proud. I can't take her anywhere without people commenting how gorge she is (that's not to say that we don't get the awful stares and comments, but fortunately they're outweighed by the positive stuff). I do worry about what the future holds for her, but I don't find it nearly as scary as I did in her first year, and I've learnt to enjoy my time with her far more than when I was perma-worried.

Are you part of any SN support groups locally? The one I used to go to was attended by children with all sorts of extra needs (e.g some had been slightly preemie, some had health issues such as severe diabetes etc.), many of whom did catch up with their peers. I found it hugely helpful though being able to talk to other mums about my worries, and them understanding rather than saying 'oh my dc is just like that'.

I hope you have a lovely birthday with Seb. x

It's really difficult to avoid babies of the same age as ds, because there are plenty of mums at school who had a baby the same time as me, so I see them every day.

Where can I find out if there's a SN toddler group or similar near me?

(Thanks again for posting everyone!)

I got recommended one by our paediatrician (I was v.v. reluctant to go at first, but it was brilliant, in fact I met one of my best mates there ). Do you have a community paediatric nurse, or a good HV, they might be able to advise?

Our Portage group runs a 'family group' every monday - like a toddler group run by the Portage staff and we get to use the sensory room.

(Do you have Portage btw? You can self refer, do not need your HV/DR/Paed to do this. I found them a great personal support, even though I don't really have it anymore as have SN nursery place I still call my old contact if I need advice or the opinion of someone who knows Ds well - it's saved my sanity (ish))

Also our local (well 6 miles away) church runs a bi-monthly SN toddler group, but I found out about it through Portage.