‘Early life experiences’ seems to be the phrase that professionals use when they don’t want to help my children.
So far, I’ve been told that Little doesn’t sleep due to her early life experiences, that her pica is due to her early life experiences, the fact that she has sensory issues is down to her early life experiences, the fact that she doesn’t feel pain is due to early life experiences and that she chooses to make eye contact only occasionally is due to early life experiences.
At a meeting with the OT last week, I asked what I could do to help her and was told, ‘I’ve spoken with the paediatrician, we feel it’s not pica, it’s just a developmental stage that she missed out on and that she’s just exploring her world.’
I pointed out that one of the criteria for pica is that they’ve been eating non food items for over a month (she’s been doing it for 21 months) and that she wasn’t putting things in her mouth and saying ‘yuck’, she was actually eating them.
The OT again said, ‘Oh, you just need to let her explore her world.’ Fortunately at this point the psychologist who was also at the meeting said, ‘She’s not exploring her world, she’s eating it,’ and the OT had to at least pretend to be interested because somebody else said it, not me.
I’ve been told by professionals that Big’s lack of speech, her lack of understanding of speech and her complete lack of emotional language is due to her early life experiences, that the fact that she can’t balance at all, that she can’t cross her midline, that she falls off her chair of she stops thinking about sitting on a chair, are all due to her early life experiences.
When Big came she was 3 years and 2 months. After she’d been with us for 5 weeks, I was so concerned about her speech that I made a note of everything she said for an hour. I found the piece of paper the other day. Without sharing too much, my 3 year old said, ‘do appy’, ‘Little appy’,’poo appy’, ‘betfast’, ‘want betfast’, ‘pay now’ for an hour. She was speaking in two word sentences. By the time our referral to SALT had come in, she’d been with us nearly 6 months. The S&L therapist said, ‘I’m not going to assess her, I’m sure that by being with you, she’ll make progress.’ We had a follow up appointment 6 months later, the therapist listened to me and Big playing for 10 minutes and said at the end ‘She’s fine.’ (During this time Big had repeated the same play 6 times, used the same sentence structure each time and had not reacted in any way to any emotional language that I used.)
We were told by OT that we’re being discharged because she can hold a pencil, she can write her name and she is ‘beginning to be able to catch a ball’. Never mind that she uses her whole body to write with, that she never crosses that middle of her body, that she needs support to sit for any length of time. She can write her name and that’s ‘fine’.
It makes me wonder if my children hadn’t had their ‘early life experiences’, whether they would get more support. If things couldn’t be put down to trauma and neglect, whether somebody would want to help my children. Whether professionals think it’s me not coping with their ‘early life experiences’. I don’t understand why this phrase seems to be a reason not to help us.
Through my job, I know roughly what children should be doing when and I have worked with lots of families and professionals to support children who need the help. I am not concerned that my children need support. I am concerned that my children are not getting it. I am not hoping that they get support in a bid to close the gap between them and their peers. I am asking for support to help them live their lives. To help them live in a world that they find difficult living in.
But because of their ‘early life experiences’, professionals do not want to help us. They are happy for me to help my children as much as I can but they do not want to help me do it. And it doesn’t seem fair. I’m not asking for the world, but it might mean the world to Big if she could begin to understand emotional language. Or it might mean the world to Little if she could sleep through the night. It would mean the world to us as a family if people took my concerns seriously and that we didn’t feel that we were doing this alone all the time.
I realised after I wrote this that it is the complete antithesis to the theme of the WASO this week, which is unexpected support. So I thought I’d add a little bit in. This week my car had to go into the garage. It snowed on the day and was blowing a hoolie. I went to pick Big up who was, shall we say, less than impressed about having to put waterproofs on to walk home. As I was getting kicked in the face, two mums separately came up to me and asked if I needed a lift home. They didn’t say anything about what was happening but just put a gentle hand on my shoulder. Even though I had to decline their offers, it meant a lot that they had asked.
The best bits
Big did REALLY well at mini kickers this week. She tried really hard to kick the ball and she went out individually to do some headers. I was really proud of her.
Little got to show her daddy her playgroup last week. She was beside herself and took him round everything.
I’ve just been out for my tea!