Wednesday, 25 April 2018

How we felt after the Autism meeting....The truth.

We have been on our Autism journey since the middle of last year and the story so far is that Ellie's teacher realised she was struggling a little at school. She needed a little extra help and is a little bit different than other children in her class....We saw the school nurse and she said to her it looks like some sort of Autism?....Then we saw a woman from the Children and Young People's Service (CYPS) and she said it wasn't any type of Autism, the deafness in one ear was to blame....She decided this without seeing or meeting Ellie and the school were fantastic in changing the CYPS woman's mind. It breaks my heart to say but there IS something different about Ellie. Something was said to the CYPS woman by someone and we are still none the wiser what but she decided that someone would observe Ellie at school....

Last week I had a phone call saying the CYPS woman and her colleague would like to come to our house and meet Ellie.....I mentioned this on Twitter and on my Word of the Week post.

I mentioned the positives about how they are doing a proper assessment on her, how they are going to observe her in school and how Ellie will be going to one of the centres for a play assessment where she will be observed along with kids round about her own age....It's a step in the right direction!


What I failed to mention was how it left us feeling. Pretty negative to be honest.....This is a bit of a long post! Sorry. One of those where I will know I will feel better when I get it all out and it's there for me to go back to when I need to know what has happened.

The original CYPS woman came and was lovely.....She brought her colleague and I'm not going to say she wasn't lovely. On face value she was but she left Stu and I feeling judged and questioning our parenting skills.....There was a couple of subjects which left me feeling judged and pretty rubbish....

She asked about how Ellie socialises outside of school....
She does after school clubs within the school and we have tried her in a dance class away from school and she is at the age where she's too old for the younger class and too young for the older class. She had fun but she found herself sitting out at the side a lot. It wasn't right for us. The youth club is not an option. I don't want her going because of the kids who do go....Playing out on the streets came up and that is never going to happen. Out the front and back is fine but I am not having my girls knocking about the streets getting into trouble. It's only over the last year that Ellie has really made a couple of good friends and they are lovely but they don't have play date type of parents....

It made me think am I being too protective not letting her walk the streets with other kids or breaking the routine to take her to clubs and activities?

She asked what Ellie liked to play with...
Ellie has about 6 old dolls that she likes to take apart, swap the arms and legs and even take them off and make false legs with Lego. None of them have heads. The heads are still in her doll box but she prefers them without just because with heads they are top heavy and don't sit right. Ellie showed the woman her dolls and she was visibly horrified. She thought it was strange and said it was too but to us it is just Ellie playing....She plays schools, doctors and things like that with them and will build climbing walls, zip wires, trampolines and things like that with Lego and Knex for the dolls to use. She has plenty of other dolls which are all intact and she wouldn't dream of taking apart....It's just a thing that she does.

Soon after she asked what would happen if we asked Ellie to stop doing something and do something else like get ready for bed? It was an open question and as talking about the dolls had stuck in my mind we said that if we asked her to stop playing with them she would ask for 5 more minutes, I will give her two and then she would get angry and start stamping about and maybe throw her dolls on the table and shout.....

It led her on to say does playing with the dolls cause problems?

No it doesn't.....Ellie just doesn't like to be told what to do. We would probably have the same reaction if she was colouring in, painting, playing on the computer or watching TV. It's always 5 minutes more.....

For a few minutes I did think that playing with these dolls was a problem.....I actually took them into school and the head teacher looked shocked for a split second but said that is very creative of Ellie....

She asked questions....The same questions the original CYPS woman asked but Ellie was sat there so it made us feel uncomfortable answering them in front of her. I don't want to be negative about my girl in front of her....It is just cruel! It didn't feel like a true assessment...

The long and short of it was that the woman thought that Ellie should be doing the work the teacher asks without daydreaming and loosing concentration. She is not doing what is expected of children of her age and there is something there....

I told all of this to the head teacher on Friday and she was again so supportive....She agreed that a lot of what was said should not have been said on front of Ellie.....I am so glad that Ellie doesn't really take anything to heart...

Like I said earlier the two woman are going into Ellie's school to observe her but I mentioned to the head teacher it is not going to work. As soon as either of them walk into the classroom Ellie will recognise them and know they are there to watch her....She might have some problems but recognising a face is not one of them.....lol

Stu and I have were left feeling they are just going through the motions of assessing my girl and they have already made their mind up about her. I spent Friday mulling all of this over and felt pretty rubbish about it. I met with friends for coffee and spoke to one about it and she was fab and agreed that we are doing the right things with Ellie. She shouldn't be out playing on the streets and so what about the dolls.....I spoke to the head and she reassured me. It's pretty crap how someone is there to help can leave you feeling so judged and a failure as a parent.....

It was a one day thing of feeling rubbish....I am over it now! I know that we are doing our best for Ellie...Thank you for reading x

6 comments :

  1. when you live with a whole family of those on the autistic spectrum you become quite blase about it , my partner and i both have sons with problems of differing degrees and total nightmare daughters , as adults they function remarkably well, the stereotyping is the hard thing to get past , ASD seems to be either rainman or forest gump by the world at large and its a fact that we are all individuals . I was also a dolls head remover and made ragdolls with no faces for many years but back in the 70s then it was just considered as strange ..lol ... She will be fine she is Ellie an individual

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  2. Oh no! Please don't feel that you are bad parents. I have never met you but I can tell by your words here on your blog that you are very good parents. It does make you feel judged though, but the simple truth is, they are not judging you they are just assessing the things that Ellie does or doesn't do. I don't like how they ask questions in front of the child, it would be better if they asked them privately. I just hope that at the end of all this there will be a better understanding of Ellie's needs at school and she will get help. xx

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  3. I have been reading your blog long enough to know you and how hard you work to keep your daughters happy.

    Visits like this one is always not nice because it feels like a fish in a fishbowl. Every move is highlighted.

    I hope that in the end Ellie will get what she needs. And that they will really find out the reasons and causes. I hope they can read this post too as it explains so many things on that day's event.

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  4. Its exhausting ! Being asked the same thing over and over - feeling its all a tick box exercise - really hope the outcome if favourable for you all - onwards and upwards x

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  5. Oh no sorry to hear you had a bad experience. The meeting did seem very unprofessional though. Especially discussing things in front of Ellie. And I don't understand the problem with the dolls? I wouldn't let my boys play out on the streets unsupervised either. They are too quick to label in my opinion. You and Stu are amazing parents, end of! :) x

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  6. Sorry to read your story, it does sound quite unprofessional, but alas, not uncommon. I hate it when the so called professionals want to discuss my son in his presence, and I know he hates it too. It took us a long time to get a diagnosis. I don't know what facilities you have in your area, but we went twice for a week-long assessment in a special centre, where we met different specialists including a child psychologist etc. The first year they left an open diagnosis, then a year later decided it was autism. The problem with autism is that it is such a wide spectrum. Getting a right diagnosis would help for a child to get a proper support at school. As for the dolls, we are all different. I remember making a scar on my favourite doll's face with scissors. I just wanted to know what would happen and whether it would disappear, and then told my Mum it was an accident. But I actually did it on purpose. I did love that doll very much.

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