BABIES WITH SPECIAL NEEDS OR HEALTH PROBLEMS

 

I remember the first utterance of 'there's something wrong with your baby and she might be taken away when she's born.' A numbness set in, questions, self blame...She had kidney reflux which at the time scans and medical knowledge was not as it is today 19 years on. She had medicine daily for a couple of years until science showed all babies have this until a few months after birth when the kidneys mature. But it was nothing to the disability we were to face that no-one knew of.

I constantly watched and enjoyed my smiling, joyous bundle of wonder knowing intuitively something was wrong. This was my third child, 'I was sucking eggs', Milestones weren't being met and eventually hospital became the norm with long separations from my eldest two children, with test after test, MRI, CT scans, lumbar punctures over a 3 year period - only to walk away with no diagnosis and 'your baby is disabled.'

Nothing prepares you for those words or what it means or will mean. Occupational Therapists, Physio Therapists...the first conversations of disabled buggy, progression into a wheelchair, food aids,bath aids, so it goes on. Somewhere in all this chaos I was trying to run a home, be a mum and very fearful of the outcome and found myself in a spiritual church deep in grief. The medium came to me as I was leaving, touched my shoulder and said "Special children are given to special mums" - I found total acceptance and never looked back.

It's been a challenging, exasperating,interesting, educational and a joyous journey full of twists and turns BUT believe it or not when you are established in your 'new normal' ordinary life does resume!

Friends and family can be amazing support but it can be hard for them to fully understand your feelings whilst dealing with their own. On top of this you may have practical or medical issues to deal with which other parents don't have to think about. Whether you are coping with a premature baby, a baby with long term health problems, disability or waiting for a diagnosis - There is a special doula for you special mums.

If you have reached a stage where you need help and/or support no matter the age of your child please call. A doula is not just for post natal and birth but for life!

 

My children are now 10 & 8, my youngest has had behavioural problems from day 1. 

 

I went to Lisa Jane for advice on how to deal with him as myself & his school were struggling with how to deal with his violent outbursts & a family member had suggested he may have ADHD. I felt as though everyone we came into contact with was judging me as a parent. It was so reassuring to speak to her! I finally felt as though my sons behaviour wasn't because I was a terrible mother! She was extremely knowledgable both about the emotional side of our situation as well as being an oracle of information about the services available to us, who to speak to, what to push for & what to say no to (& that it really is ok to say no!!) Most importantly was that she taught me to use my instincts with him to realise what he needs, as every child is different, even one with ADHD!!!

I feel so much more confident as a mother and I will be eternally grateful for the help & support she has & still is providing us. The best part about her is that she honestly does care! She is a truly wonderful lady & I fully and firmly recommend that anyone, whether pre/post labour, please talk to her!!!! 

 

Faye

Staines, Surrey

The two most important days in your life are the day you are born and the day you find why.

Mark Twain