Where to start...
First of all, I'm Denise, mum to two girls, ages 20 and 15. Just want to say hello to you all and I'm here in the hope of finding answers, help, understanding and support to the frustration we've endured as a family for almost 16 yrs.
This could be a long intro so please bear with me and any comments or input would be sooo gratefully received from you all. I'm here too to support others even though I'm very new to all of this myself.
My youngest daughter Amy is almost 16 yrs old and to say she's had to struggle for so long with emotional and social interation skills would be an understatement. She is a credit to herself for doing so and for getting through the everyday obstacles that she's had to deal with.
I'll go back to when she was a baby... she developed severe bronchiolitis which resulted in a cardiac arrest, she was resusitated, ventilated and remained in hospital for 3 weeks. She got over that then we were worried about the development of her head/skull. One doc said it was because she had been lying flat but we were referred. She had two skull plates fused together prematurely which shifted the brain forward. Consultant reviewed her for a year and a half and said no op neccessary to open plates as it wasnt too severe.
Following this her young years were her either crying, no sleep, tantrums, severe naughtiness, totally irrational behaviour which we coped with, not sure how we got through it all to be fair, but we did.
At approx ages of birth to a year we put it down to her being so poorly, at 1 to 5 years we thought she'll settle into a routine and sleep pattern when she attends school. At 6 years I asked for help, told doctors what was happening while my little one sat quiet as a mouse... Doctor could "see" no problems! ... no referral. I went back a few times and no help.
At 9 yrs old i took it on myself to ask for a speech assessment knowing this could lead to other assessments. I phoned the dept direct, got her an assessment and they did follow up with other tests. Final test saying - she is slow to process information given to her but we feel its not neccessary to do further tests. We will write to school to ask for their opinion of her capabilities and how shes doing. Result from that was she was doing well.
She was an extremely good pupil, still is, never ever had any issues about behaviour. She is a model pupil. SHe would come home and vent extreme frustrations and issues bothering her but wouldnt ask for help at school.
Shes suffered badly with friendships, she's so loyal and would be so upset when things went wrong. She's endured bullying as a result of a lot of these so called friendships.
Ok trying to cut a long story short.... what is happening now is she is blocking things out, said she feels like she's not there when she is ... i took her to the doctors and they thought petit mal seizures. When referred to neurologist and a good talk to her they said it isnt petit mal or absense seizures, its anxiety and they picked up immediately on social interation skills.
They are sending her for a brain scan to rule out the epilepsy - then onto somewhere for assessments. They are also writing to her school to find out how she is socially and academically. Both of which the school will say she is doing well, i know they will. Theres too many pupils for them to notice any other.
Neurologist asked about her academic abilities and we got her a private tutor for the last year to help her get through her GCSE's which is helping greatly. She's needed one on one and wish i'd done it sooner. Cost is immense and we probably couldnt have done it for the long term, but its helping now.
I feel so frustrated, angry that we've been let down. But our priorities now are getting the right help she needs or at least an understanding. It may be that she doesnt want the help but knowing its there is a relief if she needs it.
I also feel so annoyed and upset at myself for maybe not trying hard enough.
She is so looking forward to leaving school and starting college doing practical work which she thrives in.
We, like you all, love our children dearly, unconditionally and want only the best for them in every sense of the word.
Thank you all for taking the time to read this - if you got to the end! haha...
Wishing you a Merry Christmas with your families... xxxxxx
