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My mixed emotions as ds's first birthday approaches

46 replies

emkana · 26/05/2007 21:23

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...

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emkana · 29/05/2007 23:20

I must admit I don't even know what a Portage is, let alone how to find one!

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mummytosteven · 29/05/2007 23:26

emkana - more info on portage at www.portage.org.uk. Also if you are anywhere a SureStart/Children's centre they may have information about SN toddler groups.

lourobert · 30/05/2007 07:56

Portage is fabulous for us........I look forward to her visit and she has become a friend. She seems to get the best out of my son and I think he really likes her too.....!!

I self-referred and it took a little while but definatly worth it..!

kreamkrackers · 30/05/2007 10:34

hi we also have a portage worker and the mums and tots groups they run are full of people who can give you great support. dd1 has just got into our local sen nursery and as soon as she has 5 sessions our portage worker will no longer be allowed to visit she's been here for us since our dd1 was 6 months old. she's fab. she's also taken us to hospital appointments and helped us visit dd2 when she arrived 11 weeks early. i really will miss her

also our local cdc had a mums and tots group. that was also very good.

Arabica · 30/05/2007 23:08

Hi emkana!
Yes I know--it's been aaaaages since we last 'spoke'. But I do think of you loads and little Seb. It's amazing that he is coming up for a whole year old. Remember how scary and ghastly it was to be pg, with all the uncertainty about what was wrong with out babies and whether they would survive?

Needless to say, I know exactly where you're coming from on the first birthday thing. On Sunday I couldn't avoid a party, and, of course, met a baby just 3 weeks older but developmentally about 5 months older than Esja--laughing; holding a mobile phone to his ear in imitation of mum; eating a pear all by himself; and crawling all over the floor. It's bloody hard, isn't it?

Arabica xxx

emkana · 30/05/2007 23:40

Thanks for the tips about portage, will look into it!

Hi Arabica, lovely to "hear" from you. I do keep reminding myself that compared to all the extremely scary possibilities I was facing during the pregnancy things have turned out sooooooooooooooooo well indeed. I am very grateful for that, but still there is worry and anxiety... can't be helped I guess.

Do you have a diagnosis/prognosis for Esja?

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Arabica · 31/05/2007 00:12

No diagnosis except for global developmental delay. They've done all the usual tests and nothing has come up, but she does have slightly dysmorphic features. She's had samples taken for an 'array' chromosone test which looks for deletions--all the most common ones have been ruled out already.

emkana · 31/05/2007 15:51

I see.

Do you mind telling me what Esja can/can't do, or is that too painful?

I'm having kind of a bad day again today, where's that crystal ball when you need it...

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Flame · 31/05/2007 15:59

I have sod all of any use to say, just needed to post though... your post has brought tears to my eyes and I just want a magic wand or a crystal ball that will give you all that you hope for.

I think of you often

xx

Bumblelion · 31/05/2007 21:27

The first year is always harder I think. My dd is now 5 and I can't believe the little person that she has become.

She "failed" her 9 month development check up, couldn't sit, crawl, pick up small things, etc.

She was diagnosed with global developmental delay (both fine and gross motor skills) and it wasn't until she was nearly 3 that we found out that she has Sotos syndrome which causes overgrowth in the early years and developmental delay.

She is now 5, goes to mainstream school (with a statement and one-to-one help) but, if you had told me how far she would have come by the age of 5, when she was only 1 or 2 I would not have been able to see it.

We all want our children to be the best they can but Sasha has taught me to love and admire each child for who and what she is. She is my youngest of 3 (others are now 14 and 10) and she may not grow up to be a rocket scientist but if she grows up to lead a happy, independent (maybe) life then I will be so proud of her.

She may not be the child that I thought she would be but as long as she can be the best she can (whatever that might be) then I will be proud.

I know it is very hard not to worry about the future and what you say about children the same age, our next door neighbour has a little boy who was born on exactly the same day as Sasha and seeing, even now, what he can do and what Sasha cannot do (ride a bike without stabilisers is one thing that comes to mind) I feel sad that Sasha cannot do that but I take pride in the fact that she is a lovely, sociable, outgoing child who will do anything for anyone.

Don't focus too much on what Seb cannot do, try and focus on what he can and how far he has come. For other children what is a mild developmental stage, for Sasha it was a monumental leap (crawling at 15 months, walking at 18 months) but she did get there in the end.

Take care and don't worry too much about the future (easy to say, I know) but 5 years on I wish someone had said those words to me.

One way I think of Sasha and explain her to other people is that I think of her as "being on a bus". We all know that some buses run late and Sasha's is running a little bit later than "normal". Her bus is a little behind (the bus being her development). I like to think that as long as her bus arrives (whether that bus - development - be sitting, walking, talking, I will be happy). I know that her bus (development) might not actually get to the end destination and it might break down a bit before the end, but as long as she makes it nearly there and makes it there in most circumstances, I will be happy.

Hope that makes sense and I haven't waffled too much.

heartinthecountry · 31/05/2007 21:35

KInd of what everyone else has said, but hang in there. I really do think the first year is the hardest. It's all those damn milestones. Everyone else is ticking them off while you are desperately watching and hoping for them to be achieved.

As the years go by (can't believe that as dd1 is now nearly 5 so it is 'years') those milestones do become less important. Partly because everyone else has forgotten about them and stops harping on about who is crawling/walking/eating quinoa when. Also, either your child has achieved them, albeit late, or you've just got more used to things being how they are and been able to really appreciate how wonderful your child is in other ways without all the worry about how far behind they are.

I did the worst thing possible on dd1's first birthday and had a joint party with 4 of her peers (NT) from my NCT group. It was awful. I pretended to myself it was okay at the time but I couldn't possibly have given myself a more stark wake up call as to how far behind she was at 1. Please don't do the same!

emkana · 31/05/2007 22:56

Thanks for your posts.

I really can't stress enough how much it helps me to read about all your experiences. Gives me hope and strength.

We went out for a meal tonight (dd1's b'day today) and Seb was laughing and giggling with his dad and uncle and grandparents, and I felt much better.

Oh and I think he's trying to clap his hands...

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mymatemax · 31/05/2007 23:19

I hope you all enjoyed Sebs big day. What a clever boy

mymatemax · 31/05/2007 23:20

Oops just re read your message, I hope you all enjoyed your daughters birthday.

1dilemma · 31/05/2007 23:50

Don't know if I have anything useful to say but wanted to say i can't believe Seb is nearly 1 doesn't time fly? Glad things have worked well, hope portage can help you and you see HV when it's the right time for you.I'm sorry NHS hasn't found anyone who can give you the answers you need about Sebs health. Hope you enjoy his birthday. Also kreamkrackers you do have lovely girls real smilers.

Arabica · 01/06/2007 18:35

Seb laughing and giggling, that's great! It's brilliant that he can show you when he is happy and that he is relating to people so well.
I really liked the 'bus' analogy. I suppose there must come a time when acceptance happens, but I haven't got there yet. Anddon't know about youbut I'm very definitely nowhere near that sodding 'Holland' cutesy poem I keep getting sent. People refer me to it with the best possible intentions. But, as my grandmother would say, oy vey.

Arabica · 01/06/2007 18:39

You asked what Esja can do--she can roll over and over; sit unsupported for a few minutes if placed in the right position; pick up big objects, (but not using the pincer grip); grab a rice cake and eat it. She doesn't really make speech sounds, but she does use her voice to communicate and has a cute little laugh. She's just started noticing people and smiling at them. She can lift her head and support her weight on her arms if she's put on her tummy. So we hope she will crawl or even walk one day.

Bumblelion · 01/06/2007 19:14

People always think that my life has changed dramatically since Sasha was born.

Yes, on one hand it has, but she has made me a better person and has made me accept people for who and what they are.

Two weeks ago, I took Sasha, her elder brother (10) and his friend (also 10) out for a curry.

'Friends' asked what I was thinking of taking Sasha and her brother and his friend out for a curry.

They were so well behaved (even the 10 year olds) and the time I had with them was so easy I would do it in an instant.

It makes me sad that people think that I do not lead the life I want to lead (going out on a Friday to a restaurant with 2 of my 3 children) but they proved to me that I can lead the life I want to lead.

If Sasha had not enjoyed it or made it distressful/upsetful for me then I would put it down to experience and not to do it again ... but, all 3 children were so well behaved, a lovely time was had by all that I will do it again gladly without any hesitation.

If I had thought about how the evening could have turned out, I would not have gone and experienced the nice feeling that I felt. If it had gone bad, I woud have put it down to experience and would not to do it again (at least for a while) but I now know that I can go out with my son, his friend and Sasha (with her special needs) and we all have a great time.

Sometimes we have to be brave and try new experiences.

If it works out fine, do it again (although it might not work out quite so fine) but if it doesn't, don't let that stop you trying again (as and when you are ready).

Sometimes I feel that if my 'friends' dictated to me the life that they think I should lead, then the life that I currently lead would not be as fulfilled as it currently it.

Sometimes we have to gamble a little to gain a lot.

I know that I have in the past and I will continue to gamble on having that 'good' time whether it turns out to be 'good' or 'not so good'.

emkana · 01/06/2007 23:07

Arabica - she sounds great, she's doing really well isn't she? Nobody has sent me the "Holland" Poem, in Seb's case people are not really acknowledging yet that he's "different", because at first sight you don't notice anything. I think it will start as he gets older, maybe. Tbh I am still in denial myself sometimes, acceptance is def. not there yet.

1Dilemma, thanks for your lovely message, and bumblelion, it's great to read about your experiences, I think you're doing just the right thing and I'll strive to follow your example!

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Arabica · 05/06/2007 00:09

I was really inspired by your posts too, bumblelion. I'm just so not there yet, with the serene acceptance thing. I make noises to other people that i don't care what diagnosis she gets; that she is the person she is, etc--but deep down, I do want her to be the same as her peers, and it hurts when I'm faced with her NT peers who are so much more robust. It's getting more marked now as the babies born around the same time last summer (5 mums in Reception were pregnant) approach their first birthdays and all of them are able to crawl, except Esja.

dinosaur · 05/06/2007 12:11

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