Diagnosis – good or bad?

We’ve had plenty of these over the years, Autistic Spectrum Disorder, Aspergers, Cystic Fibrosis, Short-sightedness, Sensory Processing Disorder the list continues.  To be honest when Órla was first diagnosed with Autism we were pushing for a diagnosis because it meant (or so we thought) that Órla would get the help she needed in school. How wrong were we.  Although it meant that on paper Órla was listed as having ASD we very soon learned that our fight was only just beginning.

When Órla first came into this world it was a difficult journey for us both, she had the cord wrapped around her neck and was lifeless for the first few important minutes, she was immediately taken away and given oxygen and whatever else was necessary at the time, it felt like hours before we heard her first cry but was of course only minutes.

She was a hungry baby and took to the breast straight away but was constantly hungry so i topped her up with bottles (we now know this is one of the first signs of CF) she also had a very runny bum (another sign of CF) and although tests were done on the faeces nothing was reported back to me and we were allowed home. We settled into our new life but something just didn’t sit well with me.  I knew Órla was a demanding baby but she didn’t seem to like all the usual things babies like, being picked up, cuddled, going out in her pram, even in her car seat and going for a drive seemed to unsettle her.  As the months went by I noticed that Órla had no eye to eye contact with me but just thought maybe she was shy, she would go into her own world a lot and didn’t want much contact with others.  I had great difficulty toilet training her not because she didn’t know what to do but that she couldn’t face the smell or touching herself.  Unfortunately although she ate a lot she was constipated on a regular basis and on one occasion this caused a prolapsed rectum (her rectum popped out) something which I didn’t think was even possible.  Luckily on this occasion it was possible for the doctors to push it back in place without surgery but we were told that if it happened again she would definitely need to go to theatre.  I cant begin to tell you how much this panicked me especially as Órla was due to start school soon.

Eventually when it came to Órla’s pre-school check the health visitor started to put pieces together and she was put forward for tests.  The word Autism was mentioned.  I didn’t really know too much about it but when i researched it online everything fell into place and i knew that’s what she had so when after nearly a full year we finally got a diagnosis of Autism Spectrum Disorder. I was so happy that we finally knew what was wrong with my little girl and we could now learn how to help her settle into this crazy world we lived in.  Some parents I am told hate their children to be labelled but we were delighted.  We set about firstly educating ourselves about this condition and then began the task of educating our friends and family and to explain that all the tantrums and episodes were in fact not because Órla was spoilt and needed a good smack but in fact were sensory overloads on her poor system and meltdowns which she couldn’t help or explain but that’s a story for another post.