US tradgety and Risperadol trial

[Guest guest]

Hi everyone, it's Dee from Australia. It's been quite some time

since I posted and I've been trying to catch up reading all the

messages.

I'm sure the tradgety in the US has shaken the whole world. It's all

that people are talking about over here. What a unbelieveable act of

evil. It's really like something out of a movie, but the horrible

reality is, that it isn't. My love, prayers and thoughts (along with

many millions of other people) go out to all. May our dear Lord send

His love,comfort and strength to all those grieving, and renewed

strength and courage for all those invovled with the rescue

operations.

Jordyn is down to the last fortnight of his Risperadol/placebo trial.

He is certainly a different little boy than he was 10 1/2 weeks ago.

He is still a handful, but definitely more managable and the rewards

system is helping. It's usually enough when we're at home if he

looks like heading towards a tantrum or meltdown to say " that makes

mummy sad " , and he'll say " good boy " and stops.

When where out it's a little harder as he goes into show off mode or

withdrawal mode.

He is doing so much better at school, with very little incidents of

violence. He has become much more attached to his aide and is much

more affectionate with us all, including strangers at times. He still

prefers being alone at school, but he has some great little friends

who encourage him to play and mix. He prefers to sit alone sometimes

at group time and they are working with social stories for this and

getting him back into the classroom at lunch times.

He is putting 3, sometimes up to 4 words together more often. His

concentration has improved. He will sit more nowadays to watch his

vidoes, but still gravitates towards the telly. He rarely runs

around like the road runner in the house, but occassionally when

we're out he'll do a runner.

The biting of the fingernails and making them bleed, catching them on

the carpet or his socks hasn't stopped. Pulling his shoe laces undone

countless times a day also continues. Chewing on his clothes,

pencils, shoes, toenails etc still continues. Throwing my folded

washing still continues. He is dribbling bad again since being on

the 'I wonder drug'.

I'm thrilled at how things have turned out. The doctor told me that

Jordyn is always going to be hard work. I think I already knew that!

He is hard work, but heaps more manageable. And the one wonderful

blessing is that after 5 years of no quality sleep, he is sleeping.

He is very restless and moans, talks (mutters) in his sleep and his

sleep apnoea is heaps worse. BUT he generally sleeps all night.

We need to go see the respiratory doctor again and think about

bringing the cpap machine home again to try. He had it before, but

wouldn't leave it on. Keep your fingers crossed.

Well, I find out in two weeks time, Risperadol or placebo. I'm

anxious and curious to find out. Personally, I feel he's on the

medication as there's been too many changes, and not long after he

started taking it. I'll let you know when I find out.

love and prayers

Dee. Mum to Mel 23 (who left for a 3 weeks holiday to New Zealand

yesterday. Jordyn 8 d/s, a.s.d, adhd, o.c.d and many health probs

Jess almost 5 d/s