My son was still asleep at 11 am when we needed to leave and I hate to wake him, fearing rages. It was so important that I did and said we had to leave in 5 minutes. He was up dressed and at the front door in 2 minutes flat! What? I made the most of this and we left despite the fact that he had not had breakfast or antibiotics or nurofen (ibuprofen antiinflammatory). Usually there are many compulsions to get through.
An uneventful drive to the station, first class tickets on the train (owch, nearly £100) - but the seats were large and my son had space away from others so it was worth it. I was given complementary coffee and fruit cake - happy mum - I am a coffee addict.
We were running an hour early when we arrived at Paddington - so my son suggested going to the sushi bar there. I had to nip to the toilet first - and his compulsions were set off so I was grateful for the disabled toilet - and how easy it was to get the key. We had 3 trips back for the key and my son was embarrassed - but I explained to him that it was there for kids like him and that if staff showed their annoyance then it was their problem and perhaps they were in the wrong job or had had a bad day. It was just the tap that my son wanted and he mostly washed his face, dipping one set of fingers in the water and then putting it onto his face - I did the turning on and off of the tap and opening and closing of the door. My son ate his favourite makki - with avocado. He was really happy to have found it but said it didn't taste as good as it used to - we used to stop there regularly - I think his taste buds have changed.
There was an enormous queue for a taxi. Thinking on my feet, I asked if we could jump the queue - I have seen people do that before. The words child and hospital got us straight into a taxi - it would have disturbed my son to have waited with so many people. My son was ok and put his seatbelt on - covering his hands with his sleeves as he did for most of the day. As he was unable to touch the door handles, I had to help him out and avoided conversation with the driver as that would have upset my son - he thinks that people spit when they talk and that it lands on him, especially in his mouth. This makes him spit - not wanting to spit into the street he spits onto his sleeves, which become wet and must feel very uncomfortable.
We were 30 minutes early for our appointment so walked around the block. Down Harley Street, past Devonshire St, past Langans - which made me sad as I remembered a great evening there with friends who are no longer here. We spotted a newsagent and my son asked for sweets. He picked some out and I paid - taking them back to the waiting room to eat. I was surprised that he could eat a lolly in the waiting room where other people had been - but this was delightful - I loved to see him sat in a chair where others had previously sat, with no problem and sucking a lolly.
We were called in to our appointment and my world changed. We have the PANS diagnosis and have dropped the Aspergers. It was obvious to the psychiatrist that my son does not have Aspergers - my son's English teacher had also said that she did not think he had it as he was so good at, for instance, metaphors.
My son has an autoimmune problem - that was obvious to this great man and that was the diagnosis. My son is going to be tested for Lyme, babesia and the other tic borne infections. Thinking of him with all these parasites in his brain was nauseating. Horrid spiral things that can drill their way through his organs and brain and cause so many problems.
Another thing of concern that I asked for help with is that my son has had no education for nearly 2.5 years. My son was termed 'an invisible child' and the fact that he is given no education 'against his human rights'. Things may be about to change here with this great man on our side.
My son has serious OCD - even today when things are so much calmer thanks to antibiotics. He will need help for this and clinics will be contacted and help sought. At last!
I was hungry on the way home and bought myself a pasty at Paddington. My son asked for one too and we ate them on the train home. It was a pleasure to see my son eat this type of food - unwrapped and handled openly by the girl who served us. There was a mess on the floor - but since we had paid £100 to sit there that was too bad. My son's second lolly went in the bin as when he opened it it touched the seat and became inedible to him - guess you cannot win them all.
My son is on the way to getting better and having the services, such as a tutor, that he deserves.
Peace.
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