Where we stand with my girls suspected Autism....

I've mentioned it a few of my Word of the Week posts about where we stand with Ellie being assessed about her suspected autism. (This might be a long one)

In September we saw the school nurse who referred us to CYPS (Children and Young People's Service). She had met us and Ellie and had observed Ellie in school and suspected she has Autism. We soon got a letter saying there was an 18 week wait to be seen....

A few weeks ago I got a phone call from a woman at CYPS saying she would like to come out and meet Stu & I and find out all about Ellie and start the Autism assessment. She came and spoke to us for a good hour and a half and I never thought talking about your own child could be so draining.....Everything from my pregnancy with her and right up until now was discussed....There was a ton of questions and a lot of thinking on mine and Stu's part....

The woman said it doesn't sound like Ellie has Autism but she was ticking some of the boxes.....It does look like there are issues with school but because she doesn't show more signs at home it doesn't seem like Autism? To her it seems Ellie's lack of concentration and confidence is at school and it is all down to her the deafness in one of her ears. A  Education Health plan (EHCP) should be in place at school. She said the school was letting us down by not having an EHCP....The Sensory support worker who used to visit Ellie at school should not have been discharged and the school should be doing more to help. She left us with forms for the school to fill in and went away to speak to her colleagues to discuss Ellie.....

I was furious! I felt let down by the school and very angry but it was OK, we had parents evening the next evening. I was all ready to lose my temper and tell the headteacher and class teacher how they were not doing enough for Ellie....That didn't happen.

I said to the class teacher that the deafness was to blame for the signs of Autism....There must have been too much noise in the classroom but the teacher said even when it's one teacher and just a couple of children in a silent room Ellie struggles to concentrate and write....The teacher also said that the learner support worker who comes in once a week to help Ellie with emotional development is going to be sat with Ellie in her SATs to keep her motivated.....They have spoken to other schools and the powers that be and have and asked for the learner support worker to be with Ellie that the whole of SATs week....It is amazing! I nearly cried when the teacher told me that....Ellie is having one to one teaching, support workers coming in and more help than she is entitled to....The teacher said she would fill in the forms and they would be sent back to the CYPS woman.....Everything was still pointing towards Autism while Ellie is at school......

The chat we had with the headteacher was interesting.....She is lovely and says a lot of things off the record, so to speak.....She could not get her head around the fact the CYPS woman had made a decision about a child she had never met!! Yes, the woman who said Ellie does not have Autism has NEVER met her.....She has read the report from the school nurse who says suspected Autism and us who think something is off with her (which it kills me inside to say) and that's it. If you rang the doctor suspecting illness they wouldn't diagnose over the phone...If you were applying for a job a potential employer wouldn't just read a CV to decide whether someone got a job without an interview....

We waited for the report to be sent which arrived on the following Monday. It was an interesting read....According to the report all of Ellie's problems were down to her deafness in one ear. Apparently isn't possible to be Autistic at school but not show as many signs at home?....Until Ellie has a ECHP, a sensory support worker in place and some other issues dealt with CYPS wanted nothing to do with her and Autism is not to blame for Ellie's problems...

I had to take the letter into school because the CYPS people had sent a copy to the wrong school. Same name but a different town....The headteacher laughed out loud at the letter and was just as angry as I was. 

Friday morning just gone I spent a good 15 minutes chatting with the head teacher......A lot was said but the long and short of it was no one was coming to observe Ellie at school despite the head, SENCO and other people pleading our case to th CYPS woman. The case was closed without even getting the report back from the school. The head & I both agreed it was wrong.....

Stu and I were told to ring the CYPS woman ourselves and say our piece to her....It really felt like we had hit a brick wall....We rang first thing Monday morning but she was in a meeting.....A couple of hours later she rang back and was lovely which seemed really odd because everyone else who had spoken to her on the phone found her to be not so nice. Their words not mine....

After an apology about the letter being sent to the wrong school she said she is sending someone to observe Ellie at school and she will hopefully get into school to observe Ellie herself too....

We went and spoke to the head to tell her the news and we can't work out why the CYPS woman has changed her mind so suddenly. The head is going to ask her though...I would like to be a fly on the wall when that happens. Now I just hope that the women doesn't come into school with her mind already made up about my girl....

I have read lots about Autism over the past 6 months or so and read about the fights people go through to get their child assessed and a diagnosis and I really didn't think the same would happen to us....It has. The past few weeks have seen me angry, frustrated, let down and now happy that people are finally listening to us! It feels like we are getting somewhere.