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

[lourobert]

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......!

oh lr, I know she's your friend but could you see her without her child for a while, perhaps meet up in the evening. I don't think you have to explain anything, just avoid it until you are feeling stronger. (People who haven't been in the situation often don't understand). It is a normal reaction. When my friend's ds died I aksed her how she had coped seeing friends with children the same age, and she said she hadn't she'd avoided them, and couldn't do it for the moment. Give yourself a break, it's awful if you come out crying.

She would understand Im sure she would- she kept saying things yesterday like "but you still have a beautiful son, so what if hes not as fast as others" and although she was right it was very easy for her to sit there and say that.

Maybe I should stay away for a bit. I hadnt seen her since Louis was diagnosed and thought I was feeling strong yesterday- obviously not as strong as I thought though! :(

oh no I couldn't handle that. I'd just try and see her without children for a while, it's still raw.

I feel like my daughter took ten years to decide she was ready to be born.
I was told when she was 6 months old that she had a condition that would mean she only lived for 4 years or less.
She and her cousin were born three weeks apart and I fell to pieces the xmas just after they both turned one the differences were capable of silencing the noisiest of family gatherings.My baby was laying with an apnea moniter permenantly attatched and without inspiration or ability to explore. Meanwhile her little cousin was tearing up all the paper and eagerly pulling at the baubles off the tree. I remember not being able to look my sil in the eye because I was so angry with her that she had all the joy and I had none.

What felt like an agonising wait at the time has actually hit me now ...since She has caught up with many things, I find myself struggling to comprehend and believe the past ever really happened.

She is now 16 and a walking, talking,living (no this is not a song)very much alive and far exceeded her potential .
I actually believe that a childs potential is unknown!!!!!!!!!!!!
She breaks my heart but she fills me with pride.
She has given me unlimited free entry into the amazing world of proud young men and women who have SN.
I would not have wanted her to have the life she has because I would like her not to be autistic and to be pain free (another subject)
I am certain that the medics who predicted her lack of potential have long forgotten but I will remember those words forever.
lots of love and hope to you and yours xxx

Giddy 1- I think your right about a childs potential being unknown and I know from experience that kids are so resiliant. I guess Im just looking forward (and hoping) to get past this anger stage that I seem to be stuck in. I know it all take time.....I find myself wishing my sons life away "cant wait til he crawls or walk etc" and hes only 6 months old.

I know theres hope,lots and lots of hope.

and you would be a strange kind of Mummy if you didn't think and feel exactly as you do sweetheart,because you love him so much. Why shouldn't you feel angry sometimes?