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Old 03-26-2012, 07:36 PM   #6
Join Date: Aug 2008
Location: Melbourne, Vic, Australia
Posts: 52
Leaciesmum HB User
Re: Need encouragement and hope

I feel for you, because we too have been where you are right now. It's the waiting.. the not knowing.. wondering what the future holds.. feeling self pity and pity for our daughter.

My husband put it to me beautifully when I was sinking into depression... 'She has a life sentence, not a death sentence.' and one of my OT's also told me, 'Don't treat her any different to the other kids, she doesn't know she's disabled, she doesn't know what she's missing out on, only you do.'

Our daughter was born full term, nothing to indicate there was anything wrong. It wasn't until she wasn't sitting unsupported at 7mths that I started to worry... that's when I also put on paper all my concerns, fisted hands, stiff legs, not rolling over etc etc. Because I've previously lost a child with Spina Bifida I wondered if it was linked to that somehow. So when I searched the internet using the words, 'stiff legs' CP came up over and over again. On reading the symptoms I just knew that's what she had long before she even saw a doctor.

When she was first diagnosed like you they couldn't tell me what the future held, only time would tell. At the time they thought it was only diplegia and that at worst she would need a walker, at best she would have a limp.

Her MRI's showed no damage, they were all clear... I was told that 9% of kids with CP have normal MRI's. She also had a barrage of other tests done to rule out any other disorders. They were all clear.

Apparently our girl doesn't present as 'typical' and has been labled as their little 'enigma'.

At age 2 she was given a diagnosis of Spastic Quad, Level 4 on the GMFCS. I found this hard to believe, she can talk beautifully, she doesn't have drooling issues, she can do most anything with her hands, just differently.

She is almost 6 now, she is still classed as Quad CP, but she's a mix of spastic, dystonic and low tone (in her trunk). She is attending mainstream school but has an aide for most of the day to help with transitions. She can walk with a Hart Walker, also learning to use a Dash walker. She uses a wheelchair for a good part of the day... she can bunny hop crawl, she can write, draw and colour in... although very slowly. She is extremly popular, accepted and included by all the other kids.

I still don't know what the future holds for her... I gave up long ago trying to look too far ahead. It overwhelmed me and frightened me, so I take each day as it comes.

She gets treated the same as my other children, she gets roused on, time-out when she's naughty, she has to help clean up the toys and has jobs to do. I just allow for her own abilities and speed.

All that you have to learn in your early stages will do your head in, there is so much to learn, so many appointments, so much different therapies and help and support out there, as well as the equipement you will need. But please trust me, it does get easier... especially if you have a good case manager.

Now my daughter is at school I'm dealing with a whole new range of needs, therapists, equipment and fundings. But as I said, I take each day as it comes.

I wish you all the best, I hope your little guy is like my girl and gives you much cause for smiles as well as tears (I shed more tears of joy than sadness).