advice please - sorry it got very long.

[mydarling]

Hi,
I am a mum of two boys 6 & 7. The 7 year old is the reason I am on this forum. I think he has ODD - I say "think" as it has become more obvious to me in the last few months that his difficult and disruptive attitude maybe more serious than I realised.
He has never been an easy child - constant crying as a baby - he would only be happy when held and chatted to. He is very bright and communicated with in the first few days - making the same noise etc. - My mother says he looked as if he had lived before!
He went to playgroup and found it difficult - 3 months of crying, they made an exception to the rule as I went to class with him - only because the normal - "he will stop as soon as you leave" etc. did not apply and he would cry until he was collected again. He eventually settled and enjoyed the class but only with certain teachers. Once he moved into pre-primary he really did not get on with his teacher - a constant battle of wills - most of which he lost as he ended up in trouble.
We moved his school and he was happier - again it was the teacher that he liked and while there were still problems he and she dealt with them well although there was a fair amount of bullying (by him) even of very small children which resulted in several complaints from other parents.
He then started primary (at the same school). There were a few problems to start with mainly due to an uncertain start as he main teacher was ill and there was a sub for the first term. Once his correct teacher started things did improve. However the aggressiveness still continued and his attitude for compliance in the class room remained very low. We took him for therapy but looking back I do not think his problem was so obvious and perhaps we gave the incorrect information. Not much changed, however this Summer we took him to another therapist who has certainly dealt with his aggressiveness which has improved a huge amount - it is still there but he does manage to control it most of the time. However it is now more obvious that his problems are deeper than I thought - he seems anxious, believes he knows more than any one else, e.g he is an English child at a Spanish school and correct the English spelling in the books - incorrectly!, argues at every turn - every simple request - let the dog out, turn the TV down, have a shower etc is meet with defiance, his school work is very poor, his writing and reading below average, he constantly moves in class - either distracting others, himself or sharpening his pencil, going to the toilet etc. It is a battle to get homework done unless he feels like it, loves playing the piano but will not practice when asked, runs around making very odd noises, shouts instead of talks, jumps around when not occupied -e.g. when watching the Tv all great and quiet until an advert or the programme finishes and then all hell breaks loose - shouting, running, leaping on his brother or the dog, etc.etc. The positive side is that he is loving, loves cuddles, asks loads of intelligent questions, will keep occupied with something he likes e.g. lego, counting, has an amazing memory and when you are with him 1 - 1 and he has all or most of your attention then he is a model child and a joy to be with.
The advice I ask is - what should I do next? Drugs have been suggested to try to calm him down so that he can concentrate in class - any thoughts?
Thanks.

 

[BusynMember]

Hi there. Welcome, but sorry you have to be here.

Do they have neuropsychologist evaluations in Spain? I know each country is different. Here in the US, most of us don't feel ODD is a useful or stand alone diagnosis.

Has he ever been tested for high functioning autism/Aspergers? He does have many symptoms of that. These kids are developmentally fine and even very bright, however they are socially clueless and inappropriate and that causes defiance, frustration, and much grief. They need help. Here is an Asperger's link. No Aspie will have every single symptom. A lot of them is a red flag:

http://www.learningabledkids.com/learning_disability_LD/aspergers.htm

 

[firstangel]

Hi, I'm a single mum of a 5 yrs old child recently diagnosed with ODD. I read what you write about your 7 year old and it's like reading about mine. I initially thought about Asperger's syndrome as well since some of the symptoms are similar, but neuropsychiatric evaluation said it's ODD instead. I'm not sure whether it's good or bad news, I've read very bad articles about outcomes of ODD, absolutely not reassuring.
My son's father doesn't want to join a family therapy, and this is quite tricky here in Italy since monoparental families are quite not recognized and they wouldn't accept me to join the therapy on my own, they request both parents to attend or none.
I'm looking for someone here who has been through what I'm going through, I need help, I need someone who can understand and any suggestion you can give.

Federica

 

[mydarling]

Thanks for this.

AS was one of things I investigated and certainly he does have aspects of his personality that fit. When I read up on ODD it all fitted - i.e. if 4 out of the 12 pointers fit then... well in his case all 12 fitted! It may well be that he has ODD and AS as it seems that ODD is normally in association with something else. I think we need to take him for another avaluation and see what comes out.

Firstangel. I can see the Itialian men are just as macho as the Spanish!!! Would you be permitted to take a friend to the sessions? I feel for you - it is hard enough dealing with a child like this with a supportive father, but alone it must be very hard. Try and focus on the good stuff otherswise the bad stuff will take over and then its down hill.... keep strong!

 

[susiestar]

ODD is a mostly useless diagnosis. It tells you nothing at all about how to help the child. ODD describes a set of behavior that can be caused by a very wide range of problems. It has exactly NO, ZIP, ZERO, ZILCH, NADA info about what causes the behavior or how to handle it or how to help the child overcome it.

I would find a new neuropsychologist if a neuropsychologist could not tell me about an underlying cause that did NOT include the useless ODD diagnosis.

You may want to consult a child and adolescent psychiatrist or a developmental pediatrican to get some REAL help.

 

[TerryJ2]

Welcome, Mydarling and Firstangel.
You could be talking about my son!
ODD is, in my humble opinion, a symptom, not a diagnosis. I would, at this point, think that your son(s) is/are in the Aspie category.
Correcting other people, "Rules are for you but not for me," not seeing the efficacy of social norms and rules is all Aspie.
It also sounds like, as a baby, Mydarling, your son needed constant stimulation and company, which is exactly what my son is like.
I used to carry him in a strap-on body carrier/sling, and then wrap my arms around him, as well. Looking back on it, I can see he needed lots of pressure. But just to let go, even when he was attached to me by a fabric sling, to put in a load of wash, would elicit howls of anger and anguish.
There is a sensory issue that goes along with-all of this--these kids have neurological issues that manifest themselves through things like I just described.
I would proceed by reading up on Asperger's because the "treatments" aka responses, will help for ODD, ADHD, bipolar, etc.

 

[firstangel]

I've read a lot about Asperger's since that was my first guess, and I think I will try for a second opinion.. But what do you mean with by "treatment" for AS? Which kind of treatments?

 

[Marguerite]

We've approached treatment for Asperger's and autism from a different, mostly home-based direction. basically, we have chosen to deal with the things that are problems, and leave alone what works or what isn't really a problem. As a result we have allowed a lot of things tat perhaps other households would see as a problem. When difficult child 1 wanted to dress as a ninja and hide after dark in our huge gum tree out the front - I didn't care. difficult child 1 had his reasons and I knew where he was. I also knew he didn't have any weapons on him.

When a new washing machine arrived (front loader for the first time) and both boys were sitting in the laundry watching the clothes going round and round in the little window, heads in unison bobbing this way then that - I left them to it. I just chuckled to myself when difficult child 1 said, "I don't know why, but I find this strangely compelling."

When difficult child 3 was not talking properly, not responding to his name, not able to understand concepts such as "why" and "how" - I took him to a Speech Pathologist. We were given exercises to do at home. When he was older the exercises changed - due to the language delay, the normal vast number of cross-connections in his brain for each word are fewer. We need to actively program his brain with more cross-connections, and we stumbled on a hand-held game, "20Q" (also a computer program online) which is not only fun to play, but helps make cross-connections.

difficult child 3 & difficult child 1 needed to broaden their horizons away from their favourite topics. difficult child 1's favourite topic was fossils and dinosaurs. But it was important to have a broader knowledge of where they all fitted in to the spectrum of life, so we taught difficult child 1 Zoology. I remember at one point (he would have been about ten years old) I needed to explain the difference between Palaeontology, Archaeology and Anthropology - so I wrote a short story for him where all three studies overlapped. As it turned out, my story also had some Geology in it.

What I'm saying - you do what you do. You see a need, you find a way to meet that need. If your child is fascinated with a topic, you immerse yourself in it with him. Firstangel, is it your son that is into the solar system? In which case - find a local planetarium and take him there. Go to an observatory, introduce him to the scientists there.

One thing I found - always assume your child is capable and intelligent, even if other people say he is not. Children love to be treated as equals and Aspie kids often see themselves as equals. In fact, in their special interest areas, they can rapidly see themselves as superior. They can get really snotty and arrogant in their attitude to other people.
For example, difficult child 1 playing chess at the age of 10 - "I'll go easy on you, since you're a girl."
And later on, "You're not very good at this, are you?"
The person he was playing with was a sixty year old woman who was minding him for us for a few days while I was in the hospital having difficult child 3).

We discovered very early that difficult child 3 was a very early reader. He needed some help with it but was fascinated. His first Speech Pathologist told us to not let him read. I said, "How can we stop him?"

As it turned out, difficult child 3 learned to talk because he first learned to read. Bizarre. Plus he showed an interest in the piano, and because of his obsession with the alphabet, I taught him to play the ABC song (really Twinkle Twinkle Little Star). Because he was reading the alphabet at the time, I stuck Post-It tape to the piano keys with the letter of the note on it, then I wrote the sequence of notes on a sheet of paper for him. After that I moved towards writing it out as manuscript, with the name of the note written in on top as well. From there he went to being able to read sheet music alone, for other tunes.
Basically, what we did was take an existing obsession and use it to lead us into other areas of education. And we did this at home, ourselves.

Over the years we've seen various specialists in their field. I've gone expecting magic - answers, help, someone to say, "It's alright from here on, just do this, take this pill, use this machine and all will be perfect."

Unfortunately, it's not like that. What is more, the advice wasn't always correct. The very first neuropsychologist assessment was a disaster, because difficult child 3 was barely verbal at the time and simply didn't know he needed to cooperate. Or he didn't understand the questions, or he didn't have the words to answer. basically, he failed his first IQ test. They told he was was "borderline" (meaning retarded - a word not used these days). We now know he's a genius.

Now, we've discovered that some things just don't work well. We can't force education where his brain is simply not ready for it. For example, his English teacher 18 months ago had set work for him with questions like, "In the set text, what did Josh think James believed about Peter?"
All difficult child 3 could say was what HE (difficult child 3) believed about Peter. With help he could see that Josh didn't know everything he needed to know and therefore had a different view. But it was just too complex for him. His English teacher couldn't understand why a kid with a university-level vocabulary couldn't do the work. I couldn't make her understand that difficult child 3 may have the vocabulary, but when the work becomes more abstract or removed, he could not wrap his brain around it.

Recent research has shown that when Aspie and autistic kids are given a very early training in recognising facial expressions, they do better socially.
We had lucked out there.
You know those games you play with babies? "Where is baby's nose? Where is baby's mouth?"
Well, difficult child 3 simply couldn't do it. We know now, that he simply didn't have the language to understand. But easy child stumbled onto a game that she was able to teach him, that they used to play together. And by sheer luck - it was exactly right, according to current therapy.
She would pull a facial expression and label it. She would smile and say, "Happy." Then school difficult child 3's face to imitate. She would hold her facial expression until he had successfully copied it, then praise him.
She expanded his library of facial expressions constantly. It was a fun game and also one that we used to trot out to show off our cute baby boy.

Some years later when he started school - difficult child 3 would resort to the same learned facial expressions to express how he felt. His teacher had to try to not laugh when he deliberately put on an angry face to show that he was angry about something. I had to make it clear to the teacher - the facial expression has been put on, but the feeling is real. He really IS angry. Don't be misled. But for him, it's the only way he knows, to let you know how he feels.

We knew fairly early (about 2 and a half to 3 years old) that difficult child 3 was autistic. But the game had begun long before then. We had simply done what we could, to get through to difficult child 3.

So by all means look for professionals to help. Use those professionals as tools and resources. But in between - this is YOUR child, YOU have to do the work. So does the child.

But have faith in yourself - if you do this, it WILL bring results at some level. You cannot cure your child, he will always have autism. But how well he does in life - nobody knows. But society needs all people, including those with autism. They serve a wonderful purpose in often surprising ways. Let your child know that he is special, he is wonderful, he is amazing. Some things will be harder for him and yes, that's not fair, but life isn't always fair. Anyway, it will balance out because while some things will be hard, other things will be easier for him and other kids will stand by and wonder.

People with autism learn in a different way. Their brains seem to learn differently. Once they learn how to function best, they often get their heads down and work hard. But they need support and help because along the way it can be really tough and really unfair.

We were told early on that difficult child 3 would never be able to learn, he would never be able to attend a "normal" school. He would always need us to do everything for him. We were also told that difficult child 1 would be with us always, would never be able to live independently. Well he is now a married man with a wife who adores him. Meanwhile difficult child 3 is studying a "normal" school curriculum at an advanced level.

That is why I tell you - if what the professionals tell you doesn't feel quite right, then challenge it, ask again or ask someone else. If you see a need in your child, meet it somehow.

And along the way as you do this, you will discover some wonderful things as well as find strengths in yourself and in your child that you never knew were there.

Marg