I felt like I was finally starting to get somewhere with George's eating disorder lately. I am entirely convinced he has ARFID (Avoidant/Restrictive Food Intake Disorder) so I asked to be referred to a paediatrician by the GP. I had a chat with the paediatrician who said she was referring him to CAMHS Eating Disorder Service. Fantastic!
CAMHS called me last week, we had a chat for half an hour and then they basically decided he was too much like hard work because he's autistic. Their letter that followed states that ".....although George displays strong disordered eating symptoms consistent with ARFID, this is entirely in the context of autism, compounded by the fact that it began at such an early age; and this presentation is not within the remit of the CAMHS Eating Disorder Service."
So they've said in writing that he strongly shows signs of ARFID....but then told me on the phone that he doesn't have an eating disorder because eating disorders are mental health issues and his behaviour is because of his autism. Annoyingly, to deflect from the fact that they were fobbing me off, they said they would send me out some forms to fill in for him to have an ADHD assessment (even though there's a two year waiting list currently) "to see whether medication may be helpful." Seriously, WTF?? Thanks for nothing fuckers....
Anyway....the paediatrician wanted to give him a bit of an MOT so she made an appointment for me to take him to Children's Ward yesterday to have his weight and height measured and to have a blood test. She wants to check vitamin levels etc. and also rule out things such as celiac because of his frequent puking. To say I was anxious about taking him for a blood test is an understatement......once again his brilliant Speech & Language Therapist and his teacher did a social story to help him understand what was going to happen. I told the nurse when I got there that if he got distressed we would be leaving without the blood test - no way I'm putting him through additional stress at the moment.
As we walked through the hospital, every person we passed he shouted "Hello there! I'm going to Children's Ward!"
He lay on the bed chatting to the nurse about his " That's Not My...." books we'd taken to distract him with. I was very nervous as we FaceTimed Halle so he could chat to her while they took the blood.
He didn't even flinch once. He glanced at what they were doing a couple of times and after a minute, he turned to the doctor and said very calmly:
"Can you stop that please? It hurts."
That was it.
No fuss, no stress and didn't even try to move his arm.
I was so proud I could have cried. He really is my hero.
He’s grandma’s hero too. ❤️