I had a conversation in a Facebook group earlier in the week about an incident after she had been on an activity with her special needs group.
Dinky was struggling with the transition and the stand in leader said ‘she has been good for us all day’
Surely as a special needs group they should understand the ‘holding it in’ phenomenon that is well documented in children with autism, and the outcome is usually the parent bares the brunt of the holding it in behaviour. So telling me ‘she has been good for us’- in that moment does several things, which I am guessing is not how the person intended to come across.
1. It makes me feel, you think I’m a failure because she can behave for you but ‘misbehaves’ for me (when that isn’t even what is happening- she is not ‘misbehaving’ she is decompressing and it is out of her control)
2. It makes me feel that you think you are better at dealing with my child than I am because you managed 5.5 hours – which I’ve already done before I dropped her off and will do again before she goes to bed.
3. It immediately puts me on the defensive and stresses me out more, which stresses dinky out more because I am shorter than I mean to be.
4. It makes me feel that despite having the diagnosis and other paperwork that details Dinkys difficulties, it makes me feel they don’t understand her.
5. Finally, I begin to wonder if I want my child going somewhere she can’t be herself and that, rather than support us with the transition, says ‘she has been good for us’ which makes me feel horrid.
I’m not silly, I know the person would be horrified if they realised how crappy they made me feel, and I’m pretty sure, knowing the person who said it, it was actually supposed to be comforting that she had a ‘good day’ (which you have to question how good it was if she had to hold it in all day). The thing is, when you are tired and have had a tricky week, it just comes across as a ‘put down’, because that is what I have been used to with professionals and there was a time where the same person said she didn’t think Dinky had ADHD or needed a special school. Which again was probably meant to be positive but just makes me feel that they don’t understand her, and that just because she talks she must be fine. I had that with the mainstream schools and the person knows the trouble I had with the schools, especially the second one. They must have heard that the group leader was furious at some of the stupid things her school said. I don’t see this as any different as the second school made a point of this to me previously and actually tried to say Dinky didn’t want to come home and it must have been because of me.
It hurts. I love Dinky to the point where sometimes the love I feel for her overwhelms me. I can’t stand the thought that others feel I am neglecting or harming her making her feel she doesn’t want to come home.
Today I dropped Dinky off at a local play scheme, they are not a specialist service, but the leader and the staff really make an effort and wanted to be inclusive and said they would take Dinky and keep a close eye on her.
Any way, she has been going for a while and I forgive most of the misunderstanding as they are not a specialist service and I don’t expect them to have researched the conditions of the children in their care like I would expect from a specialist service.
Today I had to discuss with them mine and dinky’s plan for a better transition at the end of the day.
I had talked to Dinky this morning about what would make her feel better about leaving and why she struggles leaving. She couldn’t tell me, but I’m pretty sure it is the amount of demands that come from leaving at the end of the day plus knowing hometime means dinner and the start of the bedtime routine, which is not exactly preferable to playing.
To get her to leave at the end of the special needs group activity earlier in the week I had to carry her to the car, now she is getting heavy I can’t do that all the time. So I asked her if I brought her special buggy in (which we call her chair), and I got all her stuff together and all she had to do was get in the chair, would it help? She said yes, and said she likes no shoes and socks and I always make her put them on.
So I explained this to the staff, whose first response was ‘but she has been so good here’- which didn’t upset me as much as the special group doing it, because they can be taught and aren’t supposed to know. So I explained the autism ‘holding it in’ phenomenon, and they looked a little shocked. However were instant in saying “we can’t have that, what can we do to help? We thought she was getting better here but didn’t realise how it was having an effect with leaving and at home”, so I explained I would bring the chair at hometime and that it would be really help if they gave her some warnings that I was coming. They said that she had made a friend but sometimes said he annoys her because he follows her everywhere. I explained that this little boy was probably willing to do anything she told him so naturally she would be able to play with him as he is a follower and doesn’t mind Dinky being in full control. Dinky generally doesn’t have problems getting kids to play- it riles me that people assume autistic children don’t want friends. Dinky’s trouble, which I explained to them, is keeping friends, which is a problem due to her autism.
‘All kids have that though’. It was one of those moments when I wanted to face palm and slide my hand down my face. No not ALL kids manage to work their way through an entire mainstream class in a few weeks who then won’t play with them because of their need to be in control due to their PDA. Autism can sometimes be what happens with typical kids but more extreme. All children need routine, but the need for this is more pronounced in Autism.
With PDA, some of the typical autism traits are more pronounced- like all kids with autism have a level of demand avoidance and are very black and white about how things should be and being in control, but this is majorly ‘enhanced’ in PDA.
The ‘all children do that’ thing is actually dismissing the child’s difficulties, and dismissing of my concerns for my child, robbing me of my voice for her as her advocate. Again the person who said that would be horrified if they knew that is how it comes across. As a parent it makes you wonder if everyone feels that way? Because she talks and doesn’t have obvious difficulties in a play environment, that she is fine. I find myself wanting to say, well, it isn’t that simple and she wouldn’t go to a special school if she was like ‘all children’. She wouldn’t go to an independent special school in the next county if she didn’t have complex difficulties that needed a specialist placement. It isn’t like she only has trouble with me- the school have to restrain her on a weekly basis for hers and others safety.
I think part of the problem is me. I have very little self esteem and the feeling like a failure is how I feel anyway so that is the first thing that comes to my head when they say that she behaved for them is that I’m obviously not doing it right despite trying my hardest to get it right. I’m so used to professionals blaming me it doesn’t seem to be such a leap for it to be continuing with another set of professionals. I find it so hard to trust them. I want to, but I can’t.
Sometimes people need to be more careful with what they say in relation to children with special needs and what they say to tired parents when their child is struggling with transition. Equally, the reason I don’t tell them how I feel is that part of it is how I take it, and I need to learn to not let it rock me in the situation.