Thursday, March 20, 2008

Catching Up

I think this has been one of my longest breaks without posting. Not quite sure how that happened...

Seriously, though, I am suffering (finally!) from having too much to do and I think the last week has seen the cracks appearing.

Taking each member of the family in turn, this is what's been going on:

Jonathan - we saw the paediatrician. His immunoglobulin E (Ig E)/antibody level was higher than the "normal" range - though not as high as you would see in a real allergic condition. However when tested for the antibodies for gluten, dairy, soya and egg, his blood was normal. Now, as the guy said, because neither Jonathan nor I are having any of those things, you wouldn't expect to see a high level even if he IS allergic. (so what was the point, I wonder..._

Anyhow, the recommendation was to try a milk challange. Which we did. First on his skin, then his lips, then one whole grate of cheese - no reaction that we could see. Yes that night he was a bit colicky but I couldn't hand on heart say it was that cheese.

So he has now had two days where he has had some cheese - the first day I grated a potato, a carrot, microwaved that, added a handful of grated cheese and some gram flour, then shaped a potato cake and fried it lightly in canola oil. He ate it all!

Today, I made gluten free pasties for the boys, with a filling of minced beef, diced carrot, diced celery, finely chopped leek, some diced potato and some grated cheese (and the pastry had cheese in it) and he ate a small portion of that too.

Last night mind you was a horrendous night - he had full blown colic, the worst for months, screaming too much to even feed and could not be comforted. I only got 4 hours sleep, and none at all before midnight - the longest stretch he was quiet for was an hour.

So was it the cheese? I don't know, because I have had wheat for the past two days and I am feeling lousy myself, and I'm wondering if its that. One solution for that raised IgE could be him reacting to the histamine in my milk from MY reaction to something... I'm going completely wheat free again now, as from this morning, and still keeping him on some dairy (and still having a bit of dairy myself, but only a tiny amount because my system isn't used to it now) and we'll see if it improves. If not, I'll come off dairy, and if still no improvement I'll take him back off.

William: Since the diagnosis process for Samuel, we've been thinking a lot about William and realising that he doesn't know how to play. We've taken for granted both how Samuel is - and measuring "aspergers" by his yardstick - and how he has learnt to play over the years. William often comes in and asks us to play with him and we tell him he must learn to play by himself, you've got lots of toys, etc etc - all normal parent things.

The poor kid usually just goes upstairs and stands in the middle of his room - he really doesn't have a clue. Interestingly, both Roarke and I remember now that when we first had Joshua Roarke often commented on how he didn't know how to play with him. He had no rememberance of playing "imaginary games" as a child, and has always struggled with make believe tea parties, imaginary enemies, see through swords etc when the boys have been playing. Realising just what a significant factor this is in the diagnosis of aspergers, has made us rethink how we've been treating William.

Having made a huge effort - and hats off to Roarke for his double effort, as it doesn't come easy to him either - to play with William and explain HOW to play, he has been so very noticably happier and has been playing the same game now for three days. He has all the toy food set up on the bookcase in the hall and has a shop which we all have to go to whenever we go past.

He's also working on Education City again, once more storming through all the maths levels. I've printed out the progress chart so I can see what he has done and nearly all his scores are 100%

Samuel: we had the lady from Bromley Autistic Trust around, and she was very helpful and interesting. She was also extremely complimentary about our family, and very interested in the home education. She could see how so many of the things that "our kids" find hard in school were just not present in the HE environment and she commented on how Samuel has obviously flourished at home.

Roarke has a new role teaching at two local adult education colleges for a class for children who are "behind" for whatever reason, and are using a specific reading/spelling programme that uses typing. Samuel has been trying the system at home and is working on it every day, doing really well. His average accuracy is 97% and his typing speed is 11 words a minute - proper touch typing too!

Along with Joshua, he is getting involved in the Lego Club's competition to raise money for the National Autistic Society; the idea is whichever Lego Club member raises the most will win a whole load of Lego. Samuel is making his "famous" shortbread and lemonade to take to HE events, and also did a guess-the-weight-of-Stitch at our Bromley indoor gathering last week.

He's been getting into the documentaries too lately. We have instigated a rule that Samuel choses what to watch on tv over breakfast (when his favourits like Ben 10 are on), William choses at lunchtime, and Joshua over dinner (so he gets to see a documentary when the other two are relatively quiet and still!). Samuel has been quite interested - to his own amazement - in the ones that have been on which I think it a sign of maturity as well as to do with the subject matter.

Joshua: the documentaries he's been watching have been things like the sinking of the Bismark, the Titanic exploration, the dog fight series from the History Channel etc. He's also been doing the typing course, which is a big deal for him with the dysgraphia so he is a bit slower than Samuel. I think he's counting the days until he starts his sailing level 2 next week!

The latest project he is working on is a Lego movie. We spent half an hour this morning putting together some graphics for the two opening frames! They have also been watching lots of lego movies on YouTube to get some ideas.

His money raising schemes have included guess the number of lego bricks, and he's raised nearly £10 already.

He has asked his Dad to do the London Triathlon for Asthma UK so some of the money he raises will go to cover the entry fee for that too.

Roarke is doing well - very busy just not in the stuff we originally set out to do! Still, its all business, and all income. He's finding the idea of this teaching very rewarding (as well as being highly ironic!).

I've had my hair cut, and finally managed to buy some clothes so, instead of wearing stuff 2 sizes too big for me, I've got two or three things that fit! This has meant people have realised just how much weight I've lost (over 2 stone) and the hair cut has drawn attention to it!

1 comment:

Wobblymoo said...

Ann, it's hard when we get to a point where we have to accept we can't do it all. You have all been so busy too.
Take Care