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Original poster

I wish someone could tell me " this will be how your son will develop!"

31 replies

lourobert · 25/04/2006 11:17

My ds was recently diagnosed with infantile spasms. Hes now been on steriods for about 3 weeks- these stopped the fits really quickly. Were now weaning him off them.

He had his first day at nursery yesterday and it was hard not to compare him with other 6 month olds. I just wish the consulatant could tick a box with what he will do, when and what the extent of his delay will be. I just feel like Im waiting, and for me thats the worst part.

Saying that though its probably best not to know and take each day as it comes......!

OP posts:
Bethron · 25/04/2006 11:20

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Original poster
lourobert · 25/04/2006 11:26

I am enjoying him but then sometimes I feel disappointed and then get angry at myself for feeling that way- how can I be disappointed with him.......what a rollercoaster huh!

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anniebear · 25/04/2006 11:27

How did he get on at Nursery?

I know how you feel about the box, as you say, better not to know and everything he goes on to do will be amazing!

It is really good that the spasms have been stopped so quickly also

Original poster
lourobert · 25/04/2006 11:35

Nursey was fantastic- I was so pleased. As the nursery is quite quiet on a monday he can get that little bit of extra attention. I felt so reassured that I didnt feel the need to call them which was great. Id like to find the money to be able to send him another day depending how things things go.

He even did his first picture which is pride of place on the fridge his hand and foot prints!

I know its possible that the spasms will start again when weaned off....just nervous I suppose!

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Jimjamskeepingoffvaxthreads · 25/04/2006 11:45

Oh know exactly how you feel, and its hard not too.... (but does drive you mad if you think about it too much).

Original poster
lourobert · 25/04/2006 11:50

Its driving me mad already and its only been a couple of weeks- I love all the things that he is doing but cant help but focus on the things he should be but not doing yet. I feel awful for puttin him down.

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Jimjamskeepingoffvaxthreads · 25/04/2006 11:53

It's not putting him down, it's natural. I find the best way is to actually keep away from normally developing babies the same age tbh - we're hawk watching ds3 (now 15 months) and seeing other babies the same age sends me loopy, so I don't do it! (he sees other kids though, and babies the same age without me).

Original poster
lourobert · 25/04/2006 11:58

My best friend has a baby 4 months younger than mine and I find myself making excuses not to see her and her son- how awful is that! It will be even worse as he gets older. agghhh.

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Jimjamskeepingoffvaxthreads · 25/04/2006 12:02

It's not awful, if it makes you feel bad don't do it. I used to do stuff like that with ds1 (severely autistic)- meet up with friends with the same age children then go home and sob. You have enough on yourplate already. With ds2 and ds3 I had quite a few friends who had kids with SN, found that they had often felt the same way and had done the same thing as me with siblings (ie avoided normally developing ones as much as possible until relatively confident about the sbling).

It's a balance between not getting isolated, but also not seeing people who make you feel worse- even for reasons completely out of their control. It is a very normal reaction to feel like that.

anniebear · 25/04/2006 12:14

Glad nursey went well

You should look into whether you would get DLA for him, then you could use some of that for an exra day in Nursery

anniebear · 25/04/2006 12:18

Sorry, not sure there is a certain amount of time till you can get DLA, I am sure with the job you do, you will know all that anyway!!

Original poster
lourobert · 25/04/2006 12:18

Its like Im ashamed of him and Im not at all but now he has had these spasms I dont want people looking him and trying to spot all the 'differences', as a few people know Ive worked with kids with disabilities for years-em powering them and their families but I never thought Id be in the same position for my own son.

I think you have a point though- my and my dp have already agreed that he will take lo to nursey and pick him up as I will come home upset no doubt.

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2shoes · 25/04/2006 15:29

glad to hear the nursery is working out.
I felt the same when dd was little. It is so hard you just can't help looking at other kids and comparing.
She is 11 now And i have accepted her for who she is. but it does take time.

jenk1 · 25/04/2006 16:03

I know how you feel as we are going through this with dd atm.
She has been in nursery for over 2 months, she goes every morning and she still cries on and off all morning.
The only time she doesnt cry is when she is sitting on the knees of the women that work there but they cant do that all day so she wanders around with her bottle and her dolly wingeing.
The other children her age moved up to the bigger room 6 weeks ago and she is still in with the babies and will remain until september, she has CP and development delay.
I get upset when i see all the other kids playing and doing things and dd sat on someone,s knee all tearful when i go to get her. Sad

Thomcat · 25/04/2006 16:39

Hi Louroert

I'm so with you on the comparing thing again at the moment, it comes and goes. With having just sent back the forms to Lotties school, which she starts at this Sept (eeeeK!), I'm here again. We know she's behind, we know most kids with Down's syndrome are walking by now but I so badly want to know how she's doing with her speech. I wish I could just sneak a quick look into a crystal ball and know if it'll all come right in the end. That she'll walk like everyone else and be understood by people. Not much to ask really, but then again.....

Like you say, what a rollercoaster.

Thomcat · 25/04/2006 16:40

sorry for spelling your name wrong lourobert

ntt · 25/04/2006 17:28

Sorry to hear what you are going through Lourobert. I've been there myself and though I'm still a bit like that, I'm nowhere near as bad as I used to be. My son is 10 months old and so far missed most of his gross motor milestones. He's probably got cp. Don't beat yourself up about how you're feeling, it's tough enough without feeling guilty too. It's natural, like it's natural to compare babies, it just hurts when you discover yours isn't quite up to speed. I find as my son is becoming more of a personality than just a baby that I'm growing closer to him and I'm beginning to feel very proud of him for having come so far after sustaining such pain and damage at his birth. I also feel like championing him now, showing him off a bit. Up until now I've been avoiding other mums and their babies his age like the plague, but I'm not bothered about them now, I don't go out of my way to avoid anyone, just can't be arsed with all that meeting up for coffee stuff etc just because you have babies the same age, but that's just me, antisocial lol. He is who he is, I love him (took a while to realise that though), we're a little team.

Worrying is very aging, so I've stopped (yeah right ntt, of course you have - I'm working on it though, and I'm nearly there, really). He's very young and there's a lot you can do to help his development, particularly from such a young age. x

dizzy34 · 25/04/2006 17:59

Hi,

I remember saying the exact same thing when Harry was born. I was desperate3 for someone to tell me what he would or wouldnt do. When we first went into hospital i was praying he didnt have any condition, when he was diagnosed with epilepsy, i thought'i can cope with that, i just hope he doesnt have special needs'. That then turned into 'well i can cope with special needs as long as he can walk/talk and basically ahve a life'. My long and rambly point is that it is a long journey and no one can accuratly predict what he will or wont do. i drove our consultant mad asking what his development would be. I think he knew at the begininng that harry would be severely disabled and unable to walk etc, but he sought of built our confidence up instead of hitting us with it all at once. Hope the nursery goes well.

Dizzy

Original poster
lourobert · 25/04/2006 18:31

Thankyou 2shoes,jenk1,thomcat,ntt and dizzy34.

Your note was really encouraging ntt about your lo becoming a little man rather than a baby and being proud of him. Im like you and cant be bothered withall that meeting up for coffee- I couldnt be bothered before all this happened!! As we write this louis is sat on my mums knee and shes blowing him kisses and hes doing it back to her....proud moments.

I wish i had a crystal ball but then on the otherhand I dont, i try to rememeber that Louis is a baby and still so young.

Like Thomcat said I cant want to know that he'll walk and talk and be happy but then saying that I used to work with the most amazing young man who was wheelchair bound and had no speech, had to be tube feed but he had the most wicked sense of humour-his laugh was infectious and had mischeif in his eye....he loved life....but you just hope for more for your own dont you!

We will certainly be doing everything for Louis as we all do for our own.

It has really helped knowing that I arnt the only one feeling the way I do at times.

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ntt · 25/04/2006 19:15

Glad to be of help! Copying your mum is a really really great sign - especially as he's so young - isn't that actually quite advanced?! Grin

heartinthecountry · 25/04/2006 19:32

Lourobert - this is all still very very new to you and totally natural to feel like you do. I wanted to hide away from the world for quite a long time at the beginning. It wasn't that I was ashamed of dd. I just a) didn't want to be reminded and b) didn't want to have to deal with other people's shit on top of my own.

I have imprinted on my brain the first time I met up with my old NCT group after dd was diagnosed. I hadn't seen them for about 2 months or so as we had been away and then in hospital. Before, there had been little to distinguish dd from the others. But I walked into this room full of babies who were sitting (albeit propped) in a circle and had to lie dd down next to them all. The difference was so apparent at that moment it broke my heart.

But it really really does get easier. I would echo other advice - don't feel you have to put yourself in situations which will hurt. You are dealing with enough as it is.

I do think that for me it has been better not to know what dd would or wouldn't do when. I used to so desperately compare her at first. But, as dizzy says, not knowing means you kind of just get used to things gradually and it isn't such a shock. I am guessing you feel you want to know so that you can 'prepare' yourself. I felt like that. But the fact is, I don't think you can. And what you can cope with 6 months from now will be different anyway IYSWIM.

You are definitely not alone.

heartinthecountry · 25/04/2006 19:33

The other thing about not knowing is that you have no pre-conceptions. Many many children do so much more than predicted.

stapo1 · 25/04/2006 21:12

Lourobert
Can really understand how you feel right now, for a long time I would watch all the other children, scrutinising & comparing. I stopped going to toddler groups when the other mums started to comment on the obvious things that he wasn't doing. I just couldn't be bothered to explain.
DS is 3 has CP & global delay now I say to anyone that will listen look what he can do now I am amazed at how much he has achieved. I occasionaly still look at other children & often wonder what the future holds but mostly I am just proud.
Sorry if this all sounds a bit deep but I can remember feeling just like you.

tallmummy · 25/04/2006 21:33

This thread expressess how I've been feeling about ds4 aged 10 months. He has GDD and has also not reached any developmental milestones. I wish i had a crystal ball.
A lady at church has a dd same age and it brought tears to my eyes when she putt dd down to have a crawl. I watched her tip up a box of toys and start playing. My ds can just about roll over.
I feel guilty for being frustrated at not being able to get on/ we're in limbo waiting to see how it will all turn out.
He does give the soggiest cheek sucks and smiles and wraps his little arms around my neck. Sorry a bit long.

Original poster
lourobert · 27/04/2006 08:41

thankyouy to you all for taking the time to post. It is nice knowing that your not alone. I went to see my best friend yesterday whos little boy is 4 months younger and it broke my heart- but I was brave and made it to the car before crying.

I am proud of Louis already and just wish I could do more for him-then I get an overwhelming sense of having let him down- Im sure Im not alone there either.

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