Battles, fights, disappointments, being let down and misunderstands seem to have been my life for the past 6 years.
Before I adopted Spud I always thought I was a fairly strong person. Never has this been tested more than the past few months and it feels like it is ongoing. The told me during prep training I would need relisiance, be an advocate for Spud and stay strong for him. I didn’t realise they meant that this would be the case each and everyday.
The past few months have seen me trying to get a referral for FASD. This was never even mentioned as a possibility during prep training. Drugs were, trauma was but nothing about FASD. Spuds birth mother died fairly recently and at a very young agefrom alcohol related disease. The coroner told me that there was clear evidence of very heavy drinking for the past 15-20 years. Meaning she started drinking in her early teens. Spud has a DX of ADHD and RAD both of which took a fight to get. There was always a feeling, a nagging I had that it was more.
After I spoke to the coroner, I started looking into FASD and to be honest, it was half hearted and reading documents through my fingers. A friends daughter was diagnosed and we spoke. I then attended a training session on FASD and it was like a lightbulb. Spent the whole day nodding my head, feeling excited that this was Spud! Everything the trainer said and described I was agreeing with that Spud did it. It honestly felt a relief that there was something else. I was not just the neurotic mother I had been called. Suddenly there were people speaking the same language and understanding the subtleties of everyday life with Spud.
I made an appointment with the GP and poured my heart out. He looked stoney face and said that I had to take Spud back to see a GP before a referral could be made. I made another appointment, explained to Spud why we were going to the doctors and explained this in the best way I could why I was taking him. When we looked together at FASD he kept saying “that’s me mum, I do that!”
We went and saw the GP and went through the basics again although she had read the notes. Referral made to paediatrician – great!
3 weeks later I call them check the referral had been received. I was told that the NHS had cut the funding and the paedtrician was not not commissioned for “just FASD”. She was unable to see us! Back to square one. No one in my LA or neighbouring LA’s has been commissioned for FASD. I found a clinic a couple of hours away who would take an NHS referral but needed my GP to agree to fund £3500. This of course has to go to CCQ panel for approval and can take up to 4 months!
I have written a very detailed statement to go through the CCQ and have my fingers crossed. In the meantime the EHCP is still not fully finalised despite us being in version 3 of the “final” plan. Errors, missing support details are just a couple of reasons we are currently on version 3.
We also had the communication and autism team not turn up for a pre arranged assessment due to them “being too busy.” For those of you that know me can imagine my face, the steam coming out of my ears and the shear desperation and frustration!
It really feels I am on a hamster wheel that each time I think I can step out, something comes along to speed the wheel up and I have to keep going, dig deaper and use much more energy just to try and stay upright.
I knew adoption was going to be difficult but never thought it would be so hard to get the support and help we need.