Monday, 24 June 2013

Sweet morning... sour morning

This morning

The boys got up without any nagging. Tigs only had to be reminded once to lay the table for breakfast (he does that job while Pup does his physio, which in the mornings is breathing exercises) Both finished breakfast in good time and didn't chatter. They did teeth, hair etc really quickly (Tigs only had to be reminded twice) Both packed their bags and got their scooters out without being asked. And Pup remembered  to relock the shed and the back door.
No-one shouted, no-one had a tantrum (not even me). The sad bit was that no-one remembered to say "well done" to the boys for doing so well. Must tell them tonight, and report to Daddy (in their hearing of course) how good they were. I must do that. It is so easy to take good behaviour for granted.

So the day had a great start.


When I got to school Tigs teacher Mrs M. caught me to update me on Tigs IEP - Individual Education Plan. An IEP or Individual Education Plan is a programme designed for children with special educational needs (SEN) to help them to get the most out of education. 

No-one has ever told me that Tigs has special needs. No-one. I didn't know he had an IEP. 

I did mention to Mrs M. that we should have been told. I was biting my lip very hard so I do not think she realised that I was absolutely fuming (although the steam exploding from my ears may have been a clue) I don't know where to start complaining. I am very aware that Tigs is not a good 'fit' in school.That his excess energy and poor concentration make him a difficult child to manage in a class of 30 kids. But that isn't his problem, it's theirs. I know he is behind in some areas. I do not think he is seriously behind. He is a child that will learn only on his terms and when he is ready, which makes teaching him a big challenge. He is also very ahead in some areas. When the SENCO was speaking to Himself the other day she told him that she had  visited Tigs class recently and heard him reading, and she was genuinely impressed at how good his reading level is, not just how well he read but also how much he understood.

Now I am trying to decide where to go, how to handle this situation. One problem is that the teachers were told to 'back off' from us a few months back, because I told school that I was struggling badly at home and couldn't cope with too many school problems. But it would have been a basic courtesy to send us a brief email to tell us that Tigs had an IEP. Maybe?

Mrs M expected me to sign off Tigs IEP on the spot. I refused. I asked her for a copy to take home. I'll  read it, and then...   we will see.

Saturday, 15 June 2013

Adoption Memories.

There was a message on our old answerphone, that I couldn't bring myself to delete. Until we replaced the phone about two years ago it stayed there. I think it's still stored in a box in our attic. It was from to me Himself, who had been rung at work by Pup's social worker It was a very simple message. "Skye just rung me - she said "It's Yes" !"
Yes to our status as parents. We'd been matched. Pup was ours. We had a little boy. It was the end of 3 years of waiting. The beginning of 3 months of frantic preparation, planning and introductions. The beginning of something very scary and very exciting.

There is a battered old envelope in Tigs memory box that I won't throw away. It's a record of an unexpected phone call from a social worker at 'Royston Vasey', the boys birth town. She told me that Pup's birth grandma wanted us told that his birth mum had just had a new baby boy. She had very few details, but she told me that the baby, named 'Tigs', was healthy (no CF!) and  had been taken straight into foster care. We hadn't even known Pups birth mum was pregnant. I  was in a total flap, and couldn't find anything to write on in a hurry except this envelope, I scribbled down Tigs name, birth date and weight. Then just I sat down and shook - with excitement  / fear / anticipation - I don't know what I was feeling, except maybe 'is this for us?' and how perfect it would be for Pup (and the rest of us) if it was....... 
The beginning of another chapter.

Monday, 10 June 2013


Pollen count 6 trillion parts per million tonight. Not had such a bad time since I was a teen.

Miserable, Whinge. Moan. I'll even go as far as to Grump.

Havn't even got the brainpower to worry about the kids, the mother, my nieces who are in mid exam season, our sad little poorly cat or even the News.

Saturday, 8 June 2013


  Feeding is a great big raw painful area in our house. Pup and food do not go together and it has been a massive issue to us over the years he's been with us.

Pup was 20 month old when he came to us. He wasn't eating, apart from some starter baby food with no lumps. He had severe reflux, and could be sick at the drop of a hat. So he was surviving almost completely on infatrini, a milk designed for babies who fail to thrive. He had no appetite, his foster carers told us that as a baby he'd almost never cried - he never got hungry. They had struggled to get weight on him, and in their busy household the easiest way was milk. So each mealtime he had a bottle of milk followed by whatever he would eat.

  For the next two years feeding Pup became a nightmare for us. I dreaded all mealtimes. They often took over an hour I was frequently reduced to tears by the horrendous battles we had to get any sort of nutrition at all into Pup. I felt like a total failure as a mother - after all isn't feeding your kids a primary pat of the job? I was obsessional. I had plans to be such a good Mum, and when our little boy arrived I couldn't even feed him.

  Where do I start in describing his feeding problems? He didn't know how to eat. He didn't want to eat. He had missed a lot of developmental milestones concerned with feeding. he didn't know how to swallow more than tiny morsels. And he didn't care. He would keep food in his mouth like a hamster. I've seen a lump of banana stay in his mouth for over an hour, he could stuff his cheeks. He was also grieving his foster family and dealing with attachment stuff and insecurities that can make feeding a big issue in a healthy child. He had no interest in feeding himself; we were feeding him for months. 

  And he had Cystic Fibrosis. He had a body that was less efficient at digesting food, that struggled to gain weight. His calorie requirements were higher than other peoples. We kept taking him to clinics where the Doctors and dietitians would obsess about his weight and what he was eating. It didn't make for happiness. Threats of feeding tubes hung over us. We saw being tube fed as a failure. Also the Doctors would not recommend he get a tube unless he lost more weight - and he was (and still is) just about maintaining his weight enough. So, we could take the pressure off, let him eat or not eat as he liked, knowing he would lose weight... and get a gastric tube. But the risk was too great CFers can lose weight terrifyingly fast. And there is a very strong (and not well understood) link in CFers between being underweight and lung infections - which could be fatal to him. 

  We had dietitians, psychologists and speech therapists working with us to help him eat. But I don't think any of them really understood our problems in full. So many people tried to give us advice. Even close family found it hard to accept they way we pressured him into eating. So we felt really isolated. Friends would tell us to let him be. That no child ever starved himself to death (not true!) that we should let him eat what he liked (he didn't) let him graze (he didn't)  We could leave sweets and chocolates lying around the house and he'd not touch them. And he could get hysterical if we put too much pressure on him. And there was so much pressure on us that sometimes we did pass it on to him. 'Don't make a big issue of it' we were advised. But it was a massive issue. We couldn't hide that. We were so worried we were getting it wrong. We nagged. We still nag.

  Things gradually started to improve. Sloowwly. Painfully. He started hamstering less. I was dreading mealtimes less. And Tigs arrived. We suddenly had a child that wanted to eat, that enjoyed food! in fact Tigs seemed to comfort eat for the first couple of months until he got used to us. he was a role model in eating for Pup, and made us feel so much less focused on Pups issues. Even when Tigs came out with a nasty egg allergy it didn't phase us much, although it was a pain as scrambled egg was one of Pups few successes.

   And over the years things have got better. Pup will never be an enthusiastic eater. Even now he will turn down sweets. But he understands he has to eat and why, he tries, although he is still painfully slow. And we've had to make compromises. Tigs gets more crisps and unhealthy foods than are good for him (how could we give his brother all those fattening foods yet refuse them all to Tigs?) Pup still needs nutritional supplements and probably always will. But I no longer dread mealtimes, and I think Pup doesn't either. Maybe he still will need tube feeding one day. maybe we will all come to terms with that. As he gets older he is more resistant to nagging - which I hate doing anyway. He decides more and more for himself what he is going to eat. We have to learn acceptance. It is painful.

The Trip

A few pics from our holidays. My laptop must be having a good day, it's actually downloading photographs at the moment!

  For half term we went to North Wales, and camped by the sea. It was a bit cold for swimming even for us, although everyone paddled and had beach time. But despite the temperature being a little lower than we'd have liked it was good camping weather, it did rain, but only at night. We all love to lie in our sleeping bags and listen to the rain! I think that was the highlight of the trip for Tigs.
  One highlight was a visit to Caernarvon Castle, with some hairaising running up and down spiral staircases.  I get nervous on those narrow stairs, oddly, although I can climb a mountain, no problems!

 We also climbed Snowdon. We were very proud of the boys for managing this! Himself and I used to do a lot of hill walking bk, but we haven't liked to push the boys too much, we don't want to put them off walking, so we make sure holidays are 'mixed activity' with lots of stuff to enjoy. But we are so pleased that our boy with Cystic Fibrosis is capable of achieving so much. He did struggle a bit on the way up, but we said to each other that each step was stamping on CF. We did a lot of stamping. And the route down was longer, with a 2 mile trudge out down a track at the end. I thought both boys would find it a drag, but they were excellent (although we did have a 'who can complain most creatively about their achy legs' competition - which I won!)

The boys insisted on buying swords and entertained everyone in the castle with some hand to hand fighting!

Monday, 3 June 2013

Mixed feelings

  We are all at a cafe, and the waitress looks at Pup and says to me "Doesn't he look just like you!"  She didn't know he was adopted so it was totally spontaneous.

  I usually don't know how to react to that sort of comment. At the time I just smiled and said "Yes he does." - because there is a likeness, and it was a completely natural comment. It feels good that we look like family. But it isn't always so easy. Some people who know they are not our birth children seem to make comments like that to make us feel 'better' about the boys being adopted. It seems to be a classic response, a sort of denial of the situation 'Oh but they can't be adopted, they look just like you!' or even 'But they look like they are yours.'  Well, they are adopted, and they are ours and they would be ours if they were green with purple spots.

  We were camping this week, and the family in the next tent to us had a little boy who was of such different appearance to his parents that it was obvious he was adopted or fostered. That must be hard for him, and for them sometimes. But a tiny part of me was a bit jealous ,  at least people would understand why if he had problems. Maybe I want people to know the boys are adopted? No that's not right: I want people to know that they are 'different' they have issues; that when they are running riot as they often do, and maybe screaming the house down, they are not just being naughty, but they are expressing some deeply felt emotions. That they are damaged kids, kids who struggle dreadfully with boundaries; which can make their behaviour very 'interesting' at times. I want to do what some parents of kids with autism do and buy the T-shirt. But I think they would both hit the roof if I asked them to wear a shirt that said

'I'm not naughty I'm adopted' 

 or maybe

 'I'm not naughty, my birth mum screwed my head up'

Maybe not :) 

  We are getting more hardened these days to being thought 'bad' parents for either over disciplining or letting them run riot.  Friends and family 'make allowances'. I'm glad they do... mostly. I'm glad we have people who understand. But it seems so unfair all round. However, as  Pup and I tell each other at least once a week, life isn't fair. But it is fun. And it would have been fun to tell that waitress that Pup was adopted just to throw her, and see her embarrassed reaction. We didn't, it's Pups business not hers, and anyway she was doing no harm by her throwaway comment. Pup didn't react at all, that sort of thing still goes way over his head, surprisingly.