Where we are now

The last few weeks have not got any easier, largely thanks to the powers that be at our local authority who have decreed that Katie does not need an EHCP and they won’t be issuing one. So instead of now being in the draft EHCP stage and trying to finalise additional support measures we could put in place for her, we’re no further forward than we were this time last year. I have submitted a request for mediation and been given a date of 21st December.

Katie is now unable to attend school unless she has a parent or a grandparent, i.e. someone she feels safe with, going in the building with her and staying there. She is just in school Tuesday to Friday 9-12 at school’s suggestion. Even with one of us there she refuses to enter the classroom so we sit in the staff room (or in the hall if the staff room is being used) while her teacher pops in and out with work to do. She’s been allocated a robot (she’s called it Bob-bot) which sits in the classroom instead of her and is linked up to the school i-pad so that Katie can see and hear the lessons.

I have mixed feelings about Bob-bot. Katie quite likes it and it definitely helps for now because it’s better for her to be involved in the lessons to some extent than not at all. But it gives her no motivation at all to get back in the classroom, and what she really needs is to be in an environment that doesn’t overwhelm her and set off all her anxieties. A robot doesn’t help with that. It also doesn’t help her to feel safe enough to get into school without someone having to be with her. Us staying at school with her every day is creating so much pressure and it’s not sustainable. Me and John are finding it really hard to juggle our jobs round it, and we’re lucky to have parents who can help us with it but it’s not fair on them either. They have their own lives and don’t need to be spending their retirement sitting for hours at a time in a school staff room.

Apparently to the LA this looks like a child who is well understood by her school and who is having her needs met. I think Katie’s school have tried really hard to support her. I don’t think they understand her. I don’t think she understands herself and I don’t think we as her parents fully understand her. And a child who is only going to school for 3 hours a day, won’t go in the classroom, and won’t be there without a trusted adult who isn’t part of the school staff, is not a child who is having their needs understood or met.

Katie’s OCD and fear of sick have also escalated massively and she’s constantly in full on panic mode. Sod’s law having had literally years of no one having tummy bugs, Alice and Matthew both caught sickness bugs in half term and Matthew was sick again last week. It’s safe to say our accidental exposure therapy has not helped Katie at all. She’s been absolutely terrified and illogical.

Meal times are turning into a battleground. If she thinks Alice or Matthew have got too close to her, touched the same food that she’s eating (like if they’ve put their hand in the cereal box), or breathed too near her, she won’t eat in case she’s got their germs. This is now the case whether they’re actually ill or not. She’s refused to eat anything me or John have prepared because we’ve been close to the other two when they’ve been ill. Sometimes she’ll make herself something instead, but other times she’s too worried about what she might have touched and the fact that soap ‘only’ kills 99.9% of germs so she could still get ill. On one of the days she was in school some kid brushed up against her and that sent her in to full on meltdown mode. She took her hoodie off and put it in the wash as soon as we got home, washed her hands at school and again at home, and then still refused to eat anything because there would be germs on her hands. I really don’t know how to help her with this because there’s no reasoning with her. She gets an idea in her head and you can’t shift it. This kid brushed against her arm, he didn’t even touch her hands. She didn’t want to use a knife and fork because she decided the germs would travel down from her hands down the cutlery and down to her food. She wanted to put plastic gloves on over her hands to feel safe to eat.

During Alice and Matthew’s bugs it was difficult because I wanted to be looking after them but instead everything was revolving around Katie. Thankfully they were star patients (probably because they had no choice!), took themselves off to the toilet to throw up and just sat and took it easy. Whereas Katie was constantly in floods of tears and hyperventilating. She’s now at the point where she won’t actively settle down to go to bed because she’s convinced that she’s going to be sick in the night so she’s scared to go to sleep. She sits and stays awake for as long as possible until she’s basically too tired and just passes out. I just have no idea how to help her with that because I already sit on her bedroom floor with her until she’s asleep and we have a roll out bed now permanently on the floor in our room because she ends up coming in and sleeping on that at some point during every night. In terms of trying to make her feel safer or believing that it’s OK to go to sleep nothing seems to get through to her and there is no empathising or rationalising or reassuring that seems to make any difference. And it gets so frustrating and draining going through the same thing every night.

For the life of me I can’t work out her thought processes because for someone who is so paranoid about other people’s germs and people getting too close to her, she is really unhygienic herself. She’ll be around animals, including mucking out at the stables, and not give it a second thought. She’ll have horses slobbering on her hands and be knee deep in mud and poo and then eat lunch without washing her hands. If she thinks her toothbrush has touched something it shouldn’t or someone has got too close to it she will go days without cleaning her teeth, and doesn’t grasp that that’s creating more germs than the thing she was worried about. Getting her to shower and wash her hair is an absolute mission. She’s managing it about once a fortnight at the moment and that’s only because I’m doing it for her.

Katie is incredibly hard to be around at the moment. The fear of sick dominates every area of life and is causing her massive separation anxiety. She is extremely confrontational, especially with Alice and Matthew and I think she is angry with them for getting sick in the first place. She’s completely irrational and has to have the same conversations multiple times. We’re living an exhausting and depressing Groundhog Day every day.  

I’m struggling to be the parent she needs at the moment. It’s increasingly hard to keep myself on an even keel to be able to deal with the never ending and repetitive sick conversations. I’m resentful at the lack of support available, I’m terrified for Katie, I’m worried about the implications of all of this on me doing / keeping my job, I can’t concentrate on anything, I’m sad for all of us that our family life is so difficult for now, I’m craving some peace and quiet and time to myself, I feel isolated.

I’m also trying to remember that if this is hard for me and John it’s nothing compared to how Katie is feeling. It feels harsh to be complaining about the effect this is having on me, but it is having a big effect and that’s my reality at the moment. It’s hard to get a balance between recognising that I need to offload sometimes but making sure not to do it in front of Katie and keep trying to help her.

At the moment this looks like:

  • Staying with her for social activities and at school
  • Having friends to us instead of her going to their houses
  • Reducing demands and expectations
  • Staying with her while she goes to sleep / being available during the night when she’s scared
  • As much horse time as possible (horse therapy and afternoons helping out at the stables she goes to for riding lessons) – this is really the only time she seems genuinely happy
  • Weekly sessions with a play therapist (we found her and are funding it ourselves. Katie has had 4 sessions with her so far, fingers crossed)
  • Katie found a 6 week programme to help with emetophobia and asked if she could do it. I took it as a massive positive that she’s actively looking for ways to get better so she’s currently on week 2 of that, but she does seem to have hit a bit of a wall and is finding it hard so I’m trying to encourage her not to give up on it.
  • EBSA (Emotionally Based School Avoidance) team involved at school
  • She finally (nearly 2 years later) has an assessment with CAMHS booked in December. Not holding my breath on this though as they’ve already told me there will be another wait for any treatment post assessment and they offer CBT which they don’t think will be particularly successful in Katie’s case.
  • Going to mediation to keep trying to get an EHCP in place
  • Emailed our local MP who apparently is on a mission to reduce CAMHS waiting times but says “there are routes available for support whilst waiting to which I can direct you.” I sent her a summary of our experience with CAMHS and the other support routes we’ve tried to access and asked for her advice. Let’s see if she comes back with anything useful!

Hopefully one or any of these things will help because we’ve hit breaking point.

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