Monday, September 26, 2011

Looking back - advice from another special needs mum

A couple of times now, I've met up with a group here in Hong Kong called "Special Needs Network". Basically, it's a group of mums who have kids with special needs. When I go, sometimes I feel blessed that Maddy "only" has dwarfism. Some of their kids have much "worse" disabilities and will dependent their entire life. I've felt a bit out of place at times, but these mums have some great resources regarding mainstream schooling, medical services, therapies etc and I know that they have some answers to questions that I have, or that I may have in the future.

The last meeting was the evening after I wrote my post about "remembering NICU" and I was talking with one of the mums there about it all. This mum has four kids - she had two healthy kids, then in her delivery with her twins, her son suffered a brain injury during the delivery and ended up with cerebral palsy. He is now six and although he is cognitive (ie, he can think, hear, see, everything like that), he is basically unable to control his body. He cannot speak, except for with the use of a computer he controls with his eyes, he cannot walk... 

Anyway - this mum said to me, "When you're in the moment (ie, when Maddy was in NICU), you just have to survive - you don't think about how you're coping, you just do. People tell you that they're amazed how you manage it all, but the truth is, you don't have any alternative. In some ways, looking back on that time after it's all over is even more traumatic than it was going through it, since you're not running on that adrenalin any more". 

I don't know if it's universally true or not, but I can identify with that...

(if you're in Hong Kong and want to join the Special Needs Network, please leave a comment below and I can have you added to the mailing list...)


  1. Adrenalin is certainly a blessing in those moments!

  2. hi, Nicole
    I am Pam from Hong Kong, we need some help.
    Thank you!