We've tried our very best since Year 3 to help Milly mend...
After finally being discharged from the hospital, we had a few (six) family therapy sessions with our local CAMHS - Child and Adolescent Mental Health Service.
The family support worker that was attached to the Unit Milly had been on had had to fight tooth and nail just to get us those.
Other than that, the hospital 'prescribed' some play sessions for Milly to attend as they recognised, at least to some degree, the trauma she had suffered.
These play sessions took place in the hospital itself and had been a part of Milly's time whilst she was an inpatient.
It's a job I used to do myself... and one of the things they brought up during the initial Child Protection Conference to use against me.
And 'we', as a family, were prescribed an appointment with a Psychologist.
Perhaps if I'd been less of a mess these appointments might have helped us all - and Milly especially so.
But I couldn't even make it through one appointment and left mid session in tears... waiting in the corridor for my husband and Milly to finish...
You see, my husband and I had been sent to enough rooms and spoken to enough people already - most of which had used the information we had given them and twisted it to suit what they perceived to be the 'truth' at the time... and I just couldn't cope with sitting in another of those rooms again.
(I'll elaborate more on this a little later).
When she (the psychiatrist) came out after the session she came over to me and quoted something about 'first, do no harm'.
That's the only thing I remember.
It turned out that none of us was in any fit state to see her - not just me.
So the only help we had initially was from Margo Sharp (real name). She was the woman who had been called in by the Unit to help formerly assess and diagnose Milly.
We would travel up to see her, and during these sessions she would let us talk about how Milly was now 'presenting' (how she acted now as opposed to how she acted before her time in hospital) and what we could do to try and help her.
It was Margo that explained to us how Autistic traits get magnified by trauma.
She described it like a balloon that had been inflated and that now, our job was to try and find techniques and strategies to deflate it.
Margo also went above and beyond and took time out of her own life to attend some of our first school meetings. She effectively fought Milly's corner for us - explaining what Milly would now need in order to cope.
She helped steer us in the right direction and I am forever grateful to her for that.
... But sadly, seeing Margo was never a long term solution.
After all, Milly had been formerly discharged from the hospital for around four months at that time, I believe.
Plus, we weren't even in her catchment area...
I did try and get our local CAMHS to see Milly, but I was told in no uncertain terms that given their limited budget, Milly was not a priority case.
And as I was told that by the person in charge, there was nothing I could do to try and fight it.
I'm talking about a child who couldn't even chose between two different colour lollipops anymore without having a complete meltdown.
Let me show you just how bad things were by including some typed up copies of pages, taken from a notebook she was using...
1. I stopped myself from asking if I'd washed hands well enough.
2. I stopped myself from asking if I'd cleaned my teeth for two minutes.
3. I stopped myself from asking if my teeth were ok from biting my toothbrush.
4. I stopped myself from asking if my eyes were ok from reading and writing this.
5. Didn't ask if eyes were ok from seeing sun.
6. Didn't ask if I'd washed my hands well enough.
7. Didn't ask if I'd had enough lather for 'bit' washing.
8. Didn't ask if water in mouth was ok for teeth.
9. Didn't ask if hot water in eyes was ok.
10. Didn't ask if closing one eye and not the other was ok.
11. Didn't ask if hands were clean.
12. Didn't ask if hands were clean.
13. Didn't ask if hands were clean.
14. Didn't ask if closing one eye was ok.
15. Didn't ask if I'd cleaned my teeth for two minutes.
16. Didn't ask if my eyes were ok from writing this.
17. Didn't ask if closing one eye was ok.
18. Didn't ask if hands were clean.
19. Didn't ask if hands were clean.
20. Didn't ask if bubbles on hands were ok.
21. Didn't ask if hot water on hands and faces was ok.
22. Didn't ask if eyes were ok from writing this.
23. Didn't ask if hands were clean.
24. Didn't ask if eyes are ok from writing this.
25. Didn't ask if eyes were ok from seeing the sun.
26. Didn't ask if hands were clean.
27. Didn't ask if eyes were ok.
28. Didn't ask if teeth were clean.
29. Didn't ask if eyes are ok from this.
30. Are my eyes ok from seeing laser thing?
31. Are my eyes ok from seeing laser thing?
32. Are my eyes ok from body pillow going in them?
33. Are my teeth ok from hair going in my mouth?
34. Are my teeth ok from hair going in mouth?
35. Are my eyes ok from closing one?
36. Are my eyes ok from being saw? (She meant sore)!
37. Are my teeth clean?
38. Are my hands clean?
39. Are my hands clean?
40. Are my hands clean?
41. Are my eyes ok from seeing the sun?
42. Are my eyes ok from closing one?
43. Are my teeth clean from chewing my tongue?
44. Are my eyes ok from writing this?
45. Is closing one eye ok?
46. Did I wash my hands well?
47. Are my eyes ok from writing this?
48. Are my eyes ok from seeing the sun?
49. Are my eyes ok from seeing the sun?
50. Are my eyes ok from blinking lots?
51. Teeth two minutes?
52. Teeth two minutes?
53. Eyes sun?
54. Eyes sun?
55. Hands washed well?
56. Hands washed well?
57. Hands washed well?
58. Hands washed well?
59. Hands clean?
60. Hands clean?
61. Swallowing toothpaste?
62. Swallowing toothpaste?
63. Sticking bottom jaw over top?
64. Closing one eye?
65. Eyes ok from writing this?
66. Mummy wash hands with soap?
67. Daddy wash hands with soap?
68. Mummy wash thoroughly?
69. Mummy wash thoroughly?
70. Did I swallow a fly?
71. My eyes hurt?
72. Reading for a long time?
73. Reading in bad lighting?
74. Reading 'Panasonic' in dark?
75. Banging my head?
76. Touching car?
77. Touching car?
78. Did fly touch me?
79. Did fly touch me?
80. Did fly touch me?
81. Looking at bright sky?
82. Looking at bright sky?
83. Eyelash in eye?
84. Touching eye?
85. Touching eyelashes?
86. Poking eye?
87. Sore eyes?
88. Am I dirty?
89. Aching eyes normal?
90. Soap bubbles on hands.
91. Wet feeling butt?
92. Closing one eye?
93. Closing one eye?
94. Seeing sun?
95. Hands washed well?
96. Hands washed well?
97. Teeth two minutes?
98. Hands washed well?
99. Two mins teeth?
100. No toothpaste taste?
101. Closing one eye?
102. In between fingers dirty?
103. Hair butt?
104. Hair 'bits'
105. Hand touching tap?
114. ? (Maybe she couldn't remember the question)!
123. One eye?
It's relentless to read, isn't it?
Now imagine getting an onslaught of those questions twenty, thirty, forty times a day.
That's what she was now like, at least initially...
And why was she writing these questions down?
Because we were trying out a new strategy where writing down instead of verbalising her concerns led to rewards - a strategy I had improvised from our time with Margo Sharp.
Milly was such a fragile mess and suddenly we had all these new issues to deal with that just were not there before.
I remember describing it once to a friend and saying this... 'It's like someone's just taken the jigsaw away that you've been working on, and instead they've given you a new one - with all the pieces turned upside down and no picture to follow'.
But let me get back to school...
Milly went straight back to school as soon as arrangements could be made.
She had only missed about the first week and a half of the first school term, so at least she didn't have too much to catch up on.
But first my husband and I had to attend a school meeting and meet the new Head Teacher...
I remember feeling physically sick.
No one had told them that we weren't to blame - remember?
So the only information they had about us was limited and none of it told them it wasn't my fault.
I think it took about a month - maybe six weeks before staff from the Unit could arrange a special meeting for them (and us) to attend.
That's when we were officially 'vindicated' for want of a better word... and when Mrs Parrott - the new Head Teacher, became a source of help and support.
Her door was always open to Milly, so if Milly was struggling with anything school related she would sit down with her and talk it through to see what solutions were on offer.
But sadly, despite giving us assurances that she wasn't going anywhere, she left after the end of Year 5...
But I'm leaping ahead again...
We found out (through reading the hospital notes we obtained) that school had been partially to blame for the mess we had been in as they, too, had reported that Milly was 'fine' unless I was around.
If you know anything about parenting an Autistic child you will know that this issue rises it's head quite frequently... Autistic children often act very differently at home to at school and only vent their true feelings/frustrations about the school day at home.
So Years 4 and 5 were difficult, but with Mrs Parrott's help Milly learned to cope.
I'm sure that having a very kind, very gentle teacher during Year 4 and a teacher that although not as gentle, was kind and showed patience with Milly during Year 5 helped - as did help from Autism Outreach (a service that supports pupils with a diagnosis of Autistic Spectrum Disorder in mainstream schools).
Mrs Parrott, from what I understand, touched base with her staff quite often in order to help them to help Milly.
But with Mrs Parrott gone, Year 6 was a nightmare...