Diagnosis

With my older son, Max, the diagnosis took three and a half years so by the end of it I was relieved to know what he had, had an actual name and he could now be statemented and finally start school.  He was five when he was finally diagnosed with “classic autism”.  From 18 months his speech had disappeared, he was nowhere near toilet trained, he wasn’t sleeping more than 2 hours a night and his behaviours were becoming more odd.  He’d missed the start of school, they’d withdrawn his place after her wasn’t toilet trained, so he was on an assessment part time placement at a special school.  They ended up taking him full time once we had a diagnosis.

Then started the joys of IEP’s and IDLP’s and a lot of other initials.  No one seemed to know too much about the autistic spectrum specifically.  Pecs were introduced once he was well into the school and they were a “new system”, we used Makaton (like Mr Tumble) and he finally got speech therapy.  Oh and a free bus pass.  The joys of the DLA forms started, and the appeals for the said DLA forms.  His sister was only a year older and she hadn’t really known him any differently so she accepted him just the way he was.  She stood up for him, they got up to so much mischief together and they were siblings who somehow communicated and built a relationship.  She was his best friend.

When my other son started with speech problems I noticed earlier and phoned the GP not caring if I sounded like a neurotic mother.  Fortunately my GP are a family practice and have been with me since before my eldest was born.  They knew us- I know it’s rare these days to have this continuity of care and I do feel blessed.  The doctor who had been there for us through Max’s diagnosis now handed the mantle on to his son and his son’s wife.  She saw Oliver the day after I’d phoned and had a telephone consultation, and immediately put in a request for him to be seen at the paediatric hospital department.  He was seen, assessed with the Griffiths assessment, then had a full team assessment, from physio, to occupational therapy to an opthamologist.

As naïve as it sounds I originally phoned the GP concerned with his speech.  I thought a bit of speech therapy would be recommended and we’d go from there.  Even on the results appointment when it was with the top dog instead of a minion it still never registered, the words Autistic Spectrum Disorder came out of her mouth and I just cried.  How?  How could it be ASD again?  I’d done that and was still doing it everyday, I couldn’t do it with two of them.  It wasn’t fair!  I know that sounds childish but it isn’t fair.  Apparently everyone else in the family suspected, I’d just not let the idea settle in my head.  No way could it be that again.  I felt like I’d lost another son to ASD, I felt like I must have done something wrong.  His birth was not easy and they’d never diagnosed or treated me for the pre eclampsia they finally admitted I had once we’d both nearly dies in childbirth but I carried him and I should have made them do something so he didn’t have such a traumatic start which may have affected his brain function causing the autism.  I think as a parent you always blame yourself, I do.

With Oliver though, speech therapy was in place as soon as he was under the paediatrician and other help was in place well before diagnosis, so things have moved on some, it’s still a fight but now we kind of know what we are fighting for-any help for our sons.

After the first loss

So I was kept in overnight after the operation. For my birthday tea I had some iced water and a mint.

They had prescribed medication so I was still in bed the next day waiting for the drug round. The lovely surgeon called by and explained the procedure, asked how I was and offered to show me pictures. I asked to see them, then he put them back in my file. He told me the “tissue” had gone to pathology, considering the subject he was as sensitive as he could be. He was actually the nicest person I met during it all. He then went on to explain that the human body is very clever and that over time it was more likely that my left ovary would release eggs as my body would realise  it was pointless using the right side. I don’t know how true this is and I was in my late 30’s anyway so it wasn’t really going to affect me. I was done. I was heartbroken. I wasn’t going to try again.

The psychological impact was that I no longer felt like a proper woman. I couldn’t keep hold of a baby, I’d lost half my reproductive system I felt like a failure. No one understood although looking back I’m more forgiving, what do you say to someone who has been through that. “Focus on the kids you’ve got” ” some people don’t get any” “you can always try again”.

All I had to show that she’d existed was three little scars, they’d done a laparoscopy, and gone in through my c section scar and a positive pregnancy test which is in a little bag with my pregnancy notes. I couldn’t talk about it. I know people have different views on what constitutes a proper loss but I don’t judge them on their opinion. As soon as I see that positive on the wee stick I’m planning. Up to that point I never planned on not having a baby in my arms a few months later.

I also think that because so much has happened over such a short time I never get a chance to process anything before the next disaster is upon me. This year I decided to start trying to make sense and come to terms with things. It may take longer than a year but I need to find some sense somewhere or I’m going to lose myself in what if’s and why’s.

I think the ectopic pregnancy was one of the harshest things I’ve gone through. To put it into perspective for my husband, Leon, I told him that. He knows so much about my life and that statement let him know just how bad it was. “Really? Even worse than……” yes dear, even worse than all that other crap.