21 Mar 2009

Decisions

I've had better days. Sure I've had worse, but I'm worn out and feeling negative. Dealing with Duncan today was no picnic. He's been shouting, screaming, wanting to have things go his way and making loud protestations when they don't or can't. My head hurts from the noise. He's full of plans to act out songs and not everyone wants to play along. Lady had 2 girls over to play for a while and he was roaring and thumping on her door to get them all to line up and pretend to be marching ants or something. Later, he threw a toy and it hit a picture hanging over our bed, shattered the glass which scattered all over the bed and floor. Thankfully he'd been standing in the doorway and wasn't hurt, and it had been an accident but it made me feel closer to overload. He was very sorry and drew one of his apology pictures.

But he's been acting, I think, more loud and hyperactive recently. It might be an effect of winter weather and not having enough time outdoors, which will improve with the better weather. He has an appointment with the paediatrician soon and I have been reading about people having ADHD with autism and looking into stimulant medications. It seems from the trials that children with both conditions can benefit from very small doses of stimulants like Ritalin. I will talk to the doctor about the possibility of trialing one of these drugs with Duncan, using the smallest possible dose and keeping a careful eye on the side-effects it might have. Though I'm anxious about using such medication, at least I can be sure these drugs are approved for the treatment of ADHD. I think it's worth trying it out as it might help him concentrate more on tasks other than film making, and help him learn more easily. And if it doesn't help or has side effects, there is no noted risk to suddenly stopping the medication and we can try something else. There's always something else to try, drugs are NOT "my last hope" or anything. If this fails or if I'm advised not to try them, we'll be fine.

On a related matter, I was tidying a cupboard and showed Duncan some pictures of his old school, not the one he went to last and which he asked to leave, but the school before that which he had always (as far as I could tell) enjoyed. I had preferred that school too and only moved him as the 2nd school had opened a dedicated autism unit which I'd thought would benefit him more. But the home-school communication wasn't as good as at school 1; there were a few notes home that baffled me. For instance, I was told once that Duncan wouldn't settle down and insisted on "running around too much" during a PE class in the school gym!

Anyway, Duncan asked to go to the school and named one of the children in the picture. This is a child he hasn't seen or heard about for 3 years! I asked him in surprise if he wanted to go to school, and he said, "go to school and play with the toys and then come home again."

I got thinking, often a dangerous pursuit. Perhaps it is time to try out school again for him. (Lady and Thomas are utterly uninterested in school.) While I can take him out with me, there are no groups around here that he can be part of, unlike his siblings who are in various sports and social clubs and who see their friends from the street regularly. He went to a Saturday club for learning disabled children twice but he was just too autistic for them, and anyway, it closed.

There are pros and cons no matter what I decide, and I just want to know what is best. Again, if he does go and is not happy, I can simply stop sending him, but is it worth the potential upset to find out?

I'm going to contact the educational psychologist and ask to meet her again and then I'll take a tour of the schools and meet the teachers. He will have to go to one of the "special" schools as there is no such thing yet as proper inclusive education and he would flounder at a mainstream school. Besides, I'm not counting on school to provide the main aspects of his education, he'll still get that at home. I just want him to have a chance to go out somewhere and be with other people now and then.

No doubt I'll update here when I know more.

13 comments:

d@\/e said...

A few years ago I'd heard that there were more facilities and opportunities for kids with autism in the Lisburn area than anywhere else in N.I.It seems like you've lots to get on with there. I hope your educational psychologist knows her job and has the expertise required to help you make the best decision for Duncan.Good Luck!

AnnB said...

I can really relate to your situation.
It's very difficult to make decisions when you are in the storm of the difficult behaviour. I don't know if you've got an OT on board with Ducan, but I have had some good results with the hyperactivity and tantrums with OT intervention. We have done things like the Wallberger (sp?) body brushing protocol and joint compressions. They have helped Rory to focus and have proved very calming.
It's hard when you don't get a break. Good luck with the decisions and trust your gut.

Crystal Jigsaw said...

This is something that rattles me about support. I can't send Amy to anything out of school because there simply isn't any support for her. She doesn't understand instructions and has to have them relayed to her at least twice. She would never catch up. Brownies, gym club, various other activities - all a no-no. It's sad but fortunately she doesn't know that she's missing out so I don't talk about it.

I have heard about Ritalin but have always preferred to stay well clear of any drugs.

CJ xx

Grannymar said...

Sorry to hear you are having a rough day Sharon. I hope you find a 'real listener' to help set you on the right road for Duncan & all the family.

L said...

Good luck... I work with families who go through the same struggles as you quite often. With the high turnover we often see in school, particularly with aids, it can be frustrating in terms of support. I am curious how different services are where you are, compared to me in the states.

Miss Gonzo said...

I know a few people with AD(H)S, who've been on Ritalin, and the problem for all of them was that they could take it when they were younger, but then one fine day when they reached middle age, or when they became overweight over the years, the doctors suddenly stopped prescribing them, because these drugs increase the risk of heart attacks.
After they stopped taking Ritalin, they fell into a great despair, not because they became physically addicted as such, but because the drugs worked too well, so there was no need for them to learn how to deal with ADS in any other way.
They got used to functioning normal, and noone prepared them for that scary day, when the doctor says no.

This is of course not empirical, it's just several people who don't know each other telling me the same thing.
I would definetely get more information on how Ritalin affects people in the long run and not just what the side effects are.

Sharon said...

@d@ve, I hadn't heard before about provision in Lisburn. It's great for people living there if it's true. the educational psychologist is someone I've met with before and she is very helpful.
Thanks for your kind wishes.

@AnnB, I have not seen an OT for over a year, but then I haven't seen anyone but our paediatrician. It's time to get a bit more outside help.
Thanks for your kindness. I will be having a lovely break this weekend and my blessed Dad is looking after the children.

@Crystal Jigsaw, if there were more activities he could take part in, I wouldn't even consider his return to school. It seems that the only way children like ours can do anything away from family is at schools. It's such a shame.

I think you're right to stay clear of drugs. Ritalin has not been approved for autism, I don't think there are any drugs approved for autism, but it is supposed to help in some cases with ADHD. I will be meeting the paediatrician tomorrow so I will see what she has to say. My husband is a doctor too and has read about these drugs and thinks it's worth a try.

Sharon said...

@Grannymar, thanks so much. As so often happens, whenever I write about a particularly bad day or period, things start to go much better. It's as if we reach the nadir and things can only improve. I smiled so much today, but none more than when we were in the car together singing Zip a dee do da!

@L, thanks for your comments, you've reminded me that when I look into schools, one question I'll be sure to ask is, what is the staff turn over like, including that of classroom assistants.
I'm not too sure what services are available in one place and not the other, from what I've heard, it's much the same. There might be more services here paid for by the state.

@Miss Gonzo, thank you so much for sharing that information. It is exactly why I decided to ask this question in public.
I will be sure to think about the effects of these drugs after long term use also.
But from what I read, stimulants are best used with autistic children for a short time, to give them a chance to learn new skills.

I am interested in the anecdotes as well as the published data as I don't know anyone personally who has used these drugs with autism and ADHD and I'd like to know how it made them feel.
Thanks again for taking the time to comment.

lisadom said...

we are using Respiradol with Bratty. Went on to meds in 2007 after a summer of hell and erratic behaviour. Lots of stimming, whooping and then some violence in intense tantrums. Also severe OCD, couldnt move anything or change anything in the house. No loud noises, no washing machine or dryer even.

She also didnt sleep a whole night, more than twice a week. I was a hospital case.

Coincidentally we finally had an OT do the winnie dunne and then assess the results with me, drawing circles around ADD type behaviours and then a Psychiatrist agreed.

After a lot of discussion, blood tests and other medical pre-emptives we tried Respiradol and it was AWFUL
Bratty got much worse and after a memorable drive when I couldnt move the rear vision mirror without her screaming, I went to the emergency clinic and he read up on the side affects "may cause some irritability" so thats what all that clinging to me and screaming for 2 straight hours in to my ears was!

We consulted once again and this time came up with Olanzapine.
Your GP will tell you these are anti-psychotics used with elderly people but they are approved for prescription for classic autism/ADD. It causes weight gain but a very small dose was considered okay - since Bratty was underweight anyway.

Well it was heaven! I had my little girl back and she was lovely. We stayed on it for almost a year until a few of the stims came back and her weight gain got ungainly. She was thickening around the middle = meaning vital organs so I asked to try something else and we did a switch to Respiradol.
The gradual switch had no side affects, she was obviously used to the strange feeling and it was great to see her slimming down to normal safe weight again. It works most of the time but we have to adjust the dose for her growth and the new Psych' wants an annual blood test and ECG. Just a precaution buy drugs can never be taken lightly.

Brattys erratic behaviours reduced enormously, she is in an ABA school though so 1-1 tutor with a Psych degree working under a supervisor makes a lot of difference. Little tics of OCD are not tolerated. No touching walls obsessively or standing on lines, certains steps etc.
Ironically she is just settling after a 1 hour tantrum over wearing dirty day clothes to bed instead of jammies. We insist on jammies so she doesnt obsess over a particular garment (or dirty knickers) and it has been a battle tonight. But settling now.

I am considering meds for Boo now. He is getting quite aggressive with puberty and while we have put a lot of behavioural stuff in place, increased exercise with a walk or swim EVERY NIGHT, reduced his electronic media; we still have those autistic days where you want to be someone else.
We had one today incidentally. Bitten and then screamapillared in the same day. Usually they tag team their worst behaviours, today they decided to pair up!

I would love to give you any more information you need. One of my friends in the states is using Abilify, but it is not legal for autism in Ireland- you have to have a diagnosis of bi-polar to use it.
Safer, less side affects than Respiradol. Just need a flexible Psychiatrist.

Good luck Sharon and keep the faith!
xx

lisadom said...

oh yeah and Sharon; google panorama and ritalin. There was a study done in the USA with a control group where 1 group with aDD took ritalin, 1 group took nothing, and 1 group got a hands on parenting course with Psychologists conducting the study. the Team worked with the kids and educated parents in behavioral management.
After 1 year the B.T. group were at a similar level of managing as the Ritalin group, After 2 years the Ritalin group were at the same level as the control group - back to square one. Whereas the BT group had recorded a significant improvement in quality of life.

Being a british programme they profiled a couple of teens with ADD, ADHD and interviewed their parents. They also interviewed a prominent British Psych who said that this was revolutionary and if they could replicate the study they could revolutionise ADD ADHD management in the UK - all they needed were the Personel!
then he said that getting a govt to commit to offering BT was nigh on impossible. Whereas if it was cancer treatment you could get it, But behavioral as opposed to drug based - forgeddit.

It was interesting to me as Ritalin was commonly pre-scribed in Australia in the late 90's but Autism was difficult to get anything for. As you know yourself the GP doesnt know what to do and where to send you. But let him get his pad out and he feels empowered!

And I remember HATING Dr Greene and Toddler Taming as he went on about ADD and ADHD so much. But nothing about Autism. I threw the books in the bin.

Then I found Dr Tony Attwood and fell in love with him instead.

I think autism is a spectrum and there are flashes of OCD, ADD, ADHD, Dyspraxia, Dyslexia and classic autistic areas in the brain and some kids roll more dice in one area, some in others.

The problem (as it was explained to me) is when the connections between those areas are poor and there is therefore and imbalance between them.

The Drugs can provide little chemical bridges between the areas and slowly (it is thought) allow those areas to work together better on their own.

We are not ready to do that yet but hopefully as her education, communciation and self management improve; we will be able to.

Oh and Respiradol makes her sleepy. Thank god.

She is gone asleep now so I am away to my leaba too.
xx

d@\/e said...

Sharon I was at a conference/workshop in Downpatrick along with someone who's child they suspected had some form of aspergers. A lot of what was talked about and recommended seemed to be just perfect for the child but unfortunately they lived in the wrong area, it was very disappointing for her.The postcode lottery affects so much these days.

Sharon said...

@Lisa, thanks for writing about the medications you used with Bratty.
I have not investigated that type of drug and it would not be appropriate for Duncan and his needs. But it's good that (after a hell of a time) you managed to get her the help she needed.

Sorry to hear you've had a hard time recently. Whenever Duncan gets angry or upset, I can count on his siblings to avoid stressing me out more by hassling me or complaining at the same time. But when you've 2 children who just can't manage to be calm together it must be very hard.

I'm hoping that the medication can be used for Duncan with behavioural support and then quite soon reduced to zero again, so he'll have just a little window to help him learn better coping techniques. But I'll see how it goes.

@Dave, it's hard to get equal opportunities everywhere, especially somewhere like this with such a low population.

Elfinamsterdam said...

Probably no use, but my nephew is being classified with ADD and Gran decided to start him on the MoreIq strawberry capsules.

He loves them, 2 a day and even the Teacher has begged Gran to keep giving them to him as after a month there is significant progress in his concentration and coping in class and outside class Gran says he's just easier to deal with and better all round.

Might be of no use, but they are natural so cant hurt really?

Elf.