Steps towards acceptance...

The weeks following our visit to the Professor were filled with moments of confused and conflicting emotions as the reality of the diagnosis settled in. I think that it is an important step that needs to be taken before acceptance can finally happen. Some days were spent with moments of great sadness, some anger, a pinch of self pity and finally acceptance. Munchkin was oblivious to my distress and confusion, which when I look back at that time is a blessing as I'm sure she would have found my constant mood changes distressing and bewildering had she understood my feelings...

Slowly, and most certainly not overnight, the moments of positivity started to become greater than the moments of depression and after a very brief pity party, we got up and moved on with what needed to be done. Every day, I would wait anxiously to see if the written diagnosis and report would arrive in the post so that the next steps of applying for things like the Domiciliary Care Allowance and Home Tuition could be taken. It seemed like months we were waiting but in reality it was closer to three weeks... Then the day arrived.

I ripped open the envelope and read the report. Even though I knew what was being written in the letter, it still surprised me how shocking it felt to read it in black and white. I made a cup of tea and let a tear run down my cheek as this was one of the moments that merited allowing a little squeeze of the heart and a little cry. There was more post to be opened. What I opened next would send my mind back into turmoil and confusion...

The AMO who had done the assessment in the July and the MCHAT scoring had sent a report back to the paediatrician I had seen previously. As in my previous post here she had agreed that there was indeed a problem with Munchkin and had urged me to apply for the Assessment of Need. The letter I received from the paediatrician, the same morning I received the written diagnosis, pulled the rug from under my feet. It was a scathing snide letter insinuating that all Munchkins perceived problems were in my head. Statements such as "inconsistent with her mother's concerns that ******* has autism" "she is young" "The Schedule of Growing Skills was very reassuring and maybe the echolalia and her difficulty understanding her own mothers speech may be due to the fluid in her left ear and not due to any difficulties with communication like autism".... once again I was left feeling as if I was being accused of Münchausen syndrome

The old feeling of self doubt started creeping back in and my transition to acceptance had been given a huge setback. It would take a few weeks of self searching and constant questioning to get back to where I had been before reading that letter. When thinking back to it now, I feel immense anger that someone I expected to trust, and indeed the first professional to take me seriously could make me feel this way. It made me realise that we are not "people" to some doctors, merely a name and a hospital number on a chart. Months later, when I saw the AMO for the DCA assessment, my faith in some doctors were restored when she remembered Munchkin from the original assessment and when shown this letter from my file, was extremely irate that we had been treated this way. She promised that it would be raised in a meeting that footnotes of observations must be considered along with the MCHAT and Growing Skills scoring charts. I sincerely hope this is the case now for the sake of children undergoing these assessments now...