Asdfamily's Blog

I have just got back from a “LAC” review (stands for looked after child) at Overley, where everyone seemed very happy with Sam’s progress so far. In preparation I got to visit Sam for the first time yesterday afternoon so I could see for myself how he was settling in. In short, it went swimmingly. He was happy to see me but didn’t appear to assume he would be going home with me. He looked well (and clean! and with a new haircut!), and demanded an hour and half worths of tickles, hugs and shushing. He also seemed quite happy for one of the children children to choose and put on a DVD and had no adverse reaction to any of their louder noises. He did look a little unsure when I left, but then had a good if quiet evening and knows I am going back to visit again at the weekend.

In other news, I have been sent copies of a second set of stories BBC Radio Shropshire ran about Sam. (I was interviewed about a week ago by reporter Dan Box). So here they are, courtesy of BBC Radio Shropshire =)

interview part 1:

second radio spot:

First the bad news, 30 minutes having a nice lounge about out of sight of sam = loss of half a begonia plant.

Begonia as Thomas the tank engine landslip.

Now the good news! My social worker came round especially to tell me that the proposal going to the joint solutions panel will be a 3 month residential assessment at Overley Hall! This is probably the best I could hope for at this stage, as this was in fact my preferred school for Sam in any case (it’s only about 5 miles away so visiting will be easy).

Yesterday began really well, with the postman delivering a couple of wooden engines from Thomas the Tank Engine that Sam had asked for only a couple of days previously (yay for ebay!). A super happy and excited Sam then spent a couple of hours re-enacting the related episodes using brio railway in his bedroom, reciting the narration perfectly as he did so. Eventually however, custom reasserted itself and down the stairs he came to watch Thomas DVDs and write his version on the PC.

Around lunchtime he was in a DVD watching phase, and sat on the sofa with the Playstation controller so he could pause and skip the programme as he wished, while consuming the pile of toast which was all he would accept for lunch that day. Suddenly he began to moan, a sort of low “aaaaaah” noise that he uses for anything distressing, whether physical pain or something distressing him from his environment.

I dashed over, not seeing anything which could be causing a problem. The pitch increased with my arrival and he stuffed the remaining strips of toast into his mouth, virtually choking himself, then gripped the controller tightly and fast-forwarded and rewound a Thomas scene repeatedly.

He then hurled the controller across the room, spat the toast on the floor, leapt at the Playstation and tried to throw it. Attempts to intervene and herd him back to the sofa result in a wail and Sam starting to punch himself in the side of his head. I grab his hands, and now the rage is all directed against me. In tears he tries his best to bite, scratch, pull my hair. The plate that held his toast is hurled to smash against the fireplace, his fisher price camera has its bump-proofness thoroughly tested as he bounces it across the floor, his colouring pencils are hurled at me one by one, and finally as I attempt to cuddle him on the sofa and he slowly retreats from full blown meltdown he tries to spit on me and scratch my arms, as the pleading “what’s the matter Sam?” from me just seems to distress him more. Attempts at destruction, and attacks on me go on for 15 minutes or so while I slowly attempt to bring him back from over the edge.

Once I have held and calmed him slightly I move to a separate chair and start trying to find out just what the matter is. Questions on the lines of “hurty sam?”, “bad telly yes or bad telly no?”, and finally “doctor yes? or doctor no?”, eventually elicit a “doctor yes?” as a response. As Sam has refused to set foot in a doctors or hospital for over a year I decide something must be really hurting and bundle him off to A&E.

Once we have the doctor goal he calms right down and is quite happy for me to get his shoes and socks on and take him to the hospital. He lets a nurse take his temperature with an ear thermometer (he never lets me do this at home!), and only shows the faint edges of his earlier distress, hurling a proffered teddy bear and attempting to ram me with his wheelchair when he begins to get bored of the wait for the doctor.

However when the doctor arrives he allows the most comprehensive set of checks I have EVER seen him allow before, including use of stethoscope, more looking in ears, a light in his eyes, and even letting the doctor feel his teeth and gums with surgical gloves on! And they find.. nothing! So home we go, luckily we are seeing his paediatrician and clinical psychologist this afternoon so I’ll go over it all with them too, but it still leaves me with an unexplained violent meltdown of a type I haven’t been subject to for months (not to that degree anyway).

Just a quick post today. I was interviewed by a reporter from Radio Shropshire, and that may be airing on the breakfast show tomorrow if they have got a response out of the council. I was also visited by the social worker again, to tell me that they may have some idea what to try next (can’t go into detail until they have run it past the school in question unfortunately).

In the 10 minutes between these two visits, Sam had unsupervised time in the sitting room. This is what I found when I came back in:

Sam went up to bed fairly early this evening, asking for paper and pencils. I happily complied as this makes for a great pre-sleep calming activity. I went in to settle him later and found he had (soundlessly!) managed to snap off a large sharp chunk of 20mm perspex that OT fitted to his wall to stop him peeling wallpaper. I now have several deep gouges on the wall, and his bed has been transformed into a really awesome thomas the tank engine quarry/building site.

Adding handyman quote to things-to-do this week list.

Today I finally spoke to the head of Shropshire’s Inclusion Services, the department of the LEA that deals with statements of special educational needs. She has been handling Sam’s case personally for a while now.

It transpires that the reason for the repeated, endless, inter-departmental meetings is that they have basically failed to come to any kind of agreement.  Like some kind of 3 way sumo fight, LEA Social Services and NHS appeared to square up to each other and refuse to give ground.

One question I asked to which no answer was forthcoming, was “Who exactly is advocating for Sam at all these meetings?” It seems to me that the departments advocate for themselves.

There are 3 options on the table at the moment. Option one, advocated by Sam’s paediatrician and clinical psychologist, as well as the Children’s Intensive Psychology Service (CHIPS), is a 24 hour curriculum in a 52 week residential school. From my reading in the area, this really is the most highly recommended strategy for children with both autism and severe learning difficulties.

I assume the objections to this are primarily due to lack of funding in the current climate, and also from the educational psychologist, who has reservations about the educational appropriateness of the likely local school, whose pupils generally do not have Sam’s extremely spiky skill profile (which verges on savant syndrome). They run small classes where the main objective is socialisation rather than educational advancement, and while that is fine by me (as Sam is quite capable of pushing his own boundaries thanks), it does mean that the activities they do are unlikely to exactly push forward Sam’s unusual technical abilities in reading, writing, drawing, music, and memorisation.

Option 2 is to send Sam to The Bridge, a large special school in the next town, which operates on principals similar to the school he developed a phobia of, and has large numbers of noisy children. They would also provide some kind of “care package”, I have no idea what this entails, but I do know someone at one of these meetings suggested a foster family, which struck me as simply the most ignorant and insulting suggestion I had ever heard.

Option 3 is to attempt to provide the 24 hour curriculum in own own home. While this addresses Sam’s unique abilities and his hatred of other children and noise, it would mean a highly intrusive, disrupted home life for Sam, myself, and his elder brother, and would in all probability cost even more than a residential school. It would also be very difficult to provide opportunities to learn to tolerate others, and would not help greatly in giving him the skills he would need to live the semi-independent life that is the ultimate goal for a person with his particular needs and difficulties.

So that’s the situation in a nutshell. Tomorrow there is a meeting involving the guy who heads up both LEA and social services. I think the hope is that in his dual hat role, he may find a way forward from this 18 month chasm of educational and therapeutic emptiness >(

Crossing my fingers.

I had a great time playing spot the game (Spyro, Jak and Daxter, Kingdom Hearts and Guild Wars all appear to feature here):

Trunk the Great Elephants Treasure

DISNEY

Montressor
Explorade Area

Ah yes, this is the town of Ben-bow on the mining at the ‘Montressor’. If at be an all a know that don’t you Jim. It’s not Explorade Area same is to galaxy he had to all had to start somewhere.

Treasure chests are armoured, only a took and bright a brut force and a big in sharp…object like a sword as being instance.

Now Jim, barrels are designed resist damage to being bumped about. So, you had to zap them, would you open them.

The mechanism for this door a peered the missing there stand it power diode. If your locate at the being it back the door should work perfectly.

Crates, at the plum-able and the any more attack and inflict it and a problem into employment by at laser, would you sword.

Wood jumps on
Explorade Area

Jim you a strong lad, and I the wall the bursting a fell at the perfectly your at chatter violins. To start climbing, simbly jump onto the object. I’m boring climb up, slide down, and shimmy around. To get down, simbly jump any time from remember. But I’m lost voile-city back on the ground, into you want health.

Now Jim, it you find at the climb siren walls some objects some has ladders. To start climbing, simbly jump onto the object. Remember jump again he want to get down.

These containers and are I on city tempered but I specially prop the inflict problem. Universal one excitement is in approach an but there rip it applied force than useful in other words, smash the daylight and overhead sword attack.

Asocilan City
Outpost

Check out for frank. In it try towards on platform musket.

The till I sir laser. In a walk down the barrel. The target change green and red it have at something couldn’t damage. It you all small charge mess-able at the target.

You will discover at sir-tin object at the light in up going a push around. It warn wall the object and tend to push it, the may succeed at warn the object. Remember Jim, you an are then into the into the so force. Some objects are quite cover and may just are moon.

Ah, this door knocked Jim. That light a so some switch somewhere and you to see, that made there right up.

Falcon City
Outpost

I believe is a local at all the des slide. He jump on, your slide along at whenever a takes you, however, you made wrong move and you may plummet of the course entirely.

Remember Jim: not anymore at mess-able the Maked eye. Here miss about you the keep on the look-out for signs of keep an areas and secrets.

“Hello Kiddo. And I’m it I know. At 100 many-cars at now of phew, if morning, these one.”

“So found 100 many-cars and see.”

“Sorry Kiddo it’s broken no the lift…it tried to stop but the broken Kiddo hit the mountain 100 mores I see.”

“Yes sure 100 can do it.”

Bank Cave
Outpost

“Fergus suddenly at the Skull Rock Face so unsafe Salt-he.”

Cready crystals are roomed and rolled and lightning and Treasures planet and the Wizards of oz and Peters pan and Alices in wonderland and Dumbos and Snows white and Returns to Jafar and Aladins and the Jungles book and the Secrets garden and Ballets shoes and the Lions king and Stigs to the dump and the Muppets Christmas carol.

I’m sorry, you Disney’s princesses cready crystals is in the souvenir.

Salt-he by at the bank-storm, it was a there’s one. The ship in a bottle save on the rail the lighthouse he couldn’t saves towards a logs. Squeak, Rattle and Roll now, there was trouble. –(Squeak, Rattle and Roll). “The lighthouse lamp has gone out,” cried the captain. Salt-he, Fergus and Now Jim at the Wind and Rain. Then Salt-he saw a captain ahead. Captain’s balloon it suddenly last control. The plunge glum the side, “Are lighthouse lamp has gone out the generator’s broken.” Salt-he had an I dear. “Fergus has my wheel he got per on the generator.” “Hurry,” shouted the lighthouse keeper. Fergus has my wheel he got per on the generator sharp. The ship in a bottle