Half-Term With The Homebirds.

As you will have gathered if you’ve read my blog before, I’m not the kind of mother who is to be found rocking in a corner, swigging gin straight from the bottle by the end of the school holidays. Some people say this must be because I am very bovine and stupid, others say that I must have very easy kids. I’ll go with the latter. Despite the fact that two of my children have not insignificant additional needs, they were/are easy kids to raise and spend time with, most especially when we are doing things on our own terms, away from the expectations and judgements of others.

We pretty much always do things on our own terms.

We had a couple of appointments this half term. I do try to arrange appointments for the holidays whenever I can, to limit the amount of time Freddie has to have off school. Of all my children, he enjoys school the most. and — a word here to any of the ‘unenlightened’ who may have found their way to this site — he is just as worthy of education as any other child, he responds and benefits from it just as much as a typical child. More than some.

And while we’re on the subject, unenlightened ones, no it isn’t unfair for the state to pay for my child’s education, even though it costs a bit more, and even though I made the choice to have him despite a #prenataldiagnosis. You expect the state to pay for your children’s education. You take it for granted, along with the expectation that the state will also pay for your children’s healthcare needs, any possible future treatment for smoking-related cancers, or future need for unemployment benefit, or drug-rehabilitation, or a spell in prison if it comes to that. There can be no reasonable argument to say that my child should not be entitled to state-funded education or healthcare. You chose to have your children just as much as I chose to have mine. Remember, if I do not have free choice, then neither do you. Want to live in that world?

Where was I? Oh yes, appointments. Freddie was due for his annual review with the Community Paediatrician, for which we needed to have have bloods taken for his biennial thyroid function check. Because the paed appointment was at 11 o’clock, it meant that we had to book the blood test for the day before, so that the results would be on the system in time for his appointment the next day.

Freddie was born with TAM — Transient Abnormal Myelopoesis, a condition related to Acute Myeloid Leukaemia. It turned out to be self-limiting and so far, touch wood, has not led to him developing AML. In his early days he was monitored closely and had a lot of blood tests. As a tot he would simply hold out his hand for the phlebotomist to take blood. Far from being a relief for me this was heartbreaking — he was just so used to having needles stuck in him. Mind you, he was good about a lot of things then: the hairdresser, the dentist … but how times change. In the last couple of years he has begun to object in no uncertain terms to the dentist and most especially the hairdresser. My lovely, and very wise, hairdresser pointed out that, although he now makes a fuss, the expression on his face isn’t any different than it ever was: the difference is that now he realises he can object to the things he doesn’t like, and that is a good thing.

It has been two years since he last had a blood test, and so I mentally braced myself for an epic struggle. When I phoned to make the appointment I asked the Children’s department to make sure that there would be a play specialist handy to help us. I arranged to pick up some local anaesthetic cream and dressings in advance, to limit the amount of time that we’d have to wait in the hospital.

I also downloaded a social story about going for a blood test. I waited until the day of the test to show it to him so that he didn’t have much time to dwell on it and get anxious and worked up. The girl in the pictures was sitting on a chair, but I told him that he’s be able to lie across my knee with his arm behind my back and we’d have a cuddle while the nurse took a few little drops of blood.

Come the day of the test, the dressings wouldn’t stay on to keep the cream in place — they weren’t a patch on Tegaderm. In the end, in mild desperation we tried wrapping his arms in clingfilm. He wasn’t very impressed, and I didn’t think the nurses would be either. We arrived at the hospital to find that we’d been told to turn up an hour earlier than our actual appointment, as whoever had put it into the computer had disregarded the fact that we’d arranged to collect the cream ahead of time and apply it at home (it takes about an hour to work). But the nursing staff were very helpful and accommodating, and found a way to squeeze us in there and then, so he wouldn’t get stressed waiting.

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To my surprise the clingfilm turned out to be a nurse-approved method of keeping the cream in place. Also to my surprise, though Freddie was saying ‘don’t want to, don’t want to’ in a worried little voice, he climbed onto my knee and allowed me to gently trap his arm behind my back. Expecting him to start struggling violently at any second, I cuddled him and tried to distract him, then suddenly the nurse said ‘all done’. He’d barely even noticed. Phew. We went to MacDonald’s as a treat.

Perhaps it was just a good day, or perhaps he is maturing.

At ten, Freddie is now 119.8 cms tall and weighs 23kg. His bloods were fine. His thyroid will be monitored every year from now on, though, because his sister and grandmother both have autoimmune hypothyroidism, which gives him a double-whammy in terms of his increased chances of developing it. He’ll only be reviewed in person by the paed every two years, though. That’s good news for anyone inclined to sit there mentally totting up the potential extra cost of a child like mine to the NHS.

I asked for some advice on a little problem I also asked about last time: our GP has proved useless on this point. The paed directed me to website that doesn’t completely address the issue, that’s all the advice she gave me. So I guess that’s something else I’ll have to sort out for myself, something else I don’t know where to begin with. But hopefully, as usually happens, the solution will present itself when the time is right. There you are, we’re saving the state money again.

Half-term wasn’t all about appointments, though. Daddy had a week off work, and after nearly twelve months of spending every spare penny and bit of spare time renovating what Freddie still calls ‘the new house’ we managed to get out and about a bit. Nothing earth shattering, but it was nice to spend some quality time together. It was goodjust to be able to prise Freddie out of the house. Even when we are going somewhere nice he is always reluctant to leave. He’d rather sit on his bed in a patch of sunshine and read.

We went to the local museum. Although most of the displays don’t change there is so much in them that you always spot something you didn’t see last time. Freddie spent ages admiring another visitor’s baby: he’s a bit obsessed with babies at the moment, and he idea that he used to be one, and looked and behaved differently to how he does now. When we went down to the cafe for lunch he decided he was going to pretend to be a baby, and insisted in climbing into a high chair, and I helped him by holding it steady. I don’t know what the old lady at the next table thought of that, but I thought it was a good idea to take the line of least resistance and let him get it out of his system. It didn’t seem like such a good idea when it came to climbing out again and his feet got stuck — all his shoes are oversized to allow for his orthotic devices — but we managed to prise him out without any damage to Freddie or the chair, and no distress, so all’s well that ends well and I got to walk away with my mum cred and my ‘I told you so’ intact.

It always saddens me that in these situations I almost feel duty-bound to tell Freddie that we should save pretend play for home. He does it more overtly in public than most children would, and you just know from their expressions what the people around are thinking — ‘Oh bless, he thinks he’s a baby’, ‘Oh bless, he thinks he’s a dog’, ‘He doesn’t understand’.

And I think: ‘Oh bless, are they really that dimwitted that they don’t realise he’s just playing?’ Pretend play is a normal stage of development that children go through. He knows exactly what he’s doing. He’s just being a kid in the same way that a typical child would, just a little more openly, for a little longer.

We also played dinosaur themed crazy golf at a garden centre. It’s definitely something we need to play again — just to correct his grip on the golf bat, for those all-important fine motor skills. The mother-therapist is never off duty. It’s got nothing at all to do with fun, no, no, no; and we wouldn’t dream of having a bet on the side as to who’s going to win …

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We played with a clever dog, we looked at day-glow tropical fish and impossibly tiny turtles. We used a moment when an overexcited and hungry Freddie acted up in a cafe as a teaching opportunity for two — resulting in Freddie calming down and the man who was staring suddenly deciding to look elsewhere.

We rounded off the week with a visit to the cinema, something else we haven’t done for a while. When the film started we got worried that it might be too ‘grown-up’ for him, although it would be appropriate for many another ten-year-old, but he sat through it quite happily even though it was a long film. On Sunday he spent the whole day just bumbling around the garden with his dad. That was, perhaps, the best day — they were both content to just mooch about in the sunshine and each other’s quiet company, tidying the paths and flowerbeds, playing ball, and just … being. Daddy didn’t want to go back to work on Monday.

I used to worry that Freddie wasn’t doing all the things that other kids with DS were doing — playing football, going to scouts, drama lessons, etc, etc. But then I realised that Daddy and I didn’t really like doing things like that either, nor Freddie’s older brother. If he’s a homebird, given to quiet and solitary pursuits it’s not surprising. Whatever his chromosome count he fits in perfectly with the rest of the family.

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3 thoughts on “Half-Term With The Homebirds.

  1. baxterluke

    Blimey, I didn’t realise that Freddie had an AML-related condition. AML is what Ava-Jane had, not nice! I love your comments on the costs of treatments/education. When I hear people moaning about paying taxes, I whip out my phone and thrust a pic of AJ under their noses and growl “She’s alive thanks to taxes.” That normally shuts them up. One of the dads on the children’s cancer ward who knew a bit about healthcare costs in the States reckoned that the treatment that his daughter had received would have const about a million dollars over there. So I think you can allow yourself a little cream for Freddie. Who won the golf bet?

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    1. kerryfender Post author

      Yes – DS didn’t really bother me too much, but I was terrified of the TAM. As soon as the doctor told us what his bloods had shown I said to him ‘but that’s Leukaemia’. They were a bit taken aback that

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    2. kerryfender Post author

      I knew that, I think. They’d been hoping I wouldn’t realise exactly what TAM was. So they got a got a doctor from Birmingham Children’s Hospital to explain more to us when he was over doing a clinic. It really got to me at first, but after a while I thought I’ve got to learn to live with this knowledge not just exist with it, shove it to the back of my mind, hope for the best, and only think about it if and when I need to. I used to dread his regular blood tests, but somehow it was comforting too, that he was being closely monitored. When we were discharged I felt like I’d been cut adrift.
      As to costs – I can well believe what that guy said. At one point the hospital had to bring platelets from Birmingham for Freddie by courier. Someone told me that that one trip would’ve cost the Trust somewhere in the order of £300. We don’t realise here just what we get for our taxes if we need it xx
      Sorry – last reply I hit send with little finger before I meant to.

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