My grandson has a behavioural disorder

[aliantha]

As the request has been made, I'm going to move this to the Loresraat. The mod there (whoever it is ) can decide whether to merge it with the existing thread.

[Avatar]

Hmmm, mods not too active in this forum.

I think it can stay its own thread. If y'all really want it merged, I'll do it, but I don't think it's necessary.

--A

[sgt.null]

using today's tests i would have been considered autistic as a kid. there was a whole year a didn't say a word. (pre-kindergarten)

my mom was telling me about and said they were considering having me checked at the end of the year when i decided to talk. some parental concern there.

there are certain mechanisms i developed at a young age - they seem odd to others but i find them comforting. and for years i could not stand physical contact with others. i never hugged my family for the longest time.

other than some unique behaviours i function rather well nowadays...

[Lefdmae Deemalr Effaeldm]

JazFusion, thank you for that information, I didn't know about hand flapping having a possible connection to this, and, in a strange coincidence, I renewed that habit just yesterday, thinking out responses here, on KW. Like I said, I usually bury such things deeply inside and they show up mostly when I lift the barriers myself - I seriously wanted to say the best things to explain everything and not hurt anyone's feelings, and there were no other people in the room to see me doing that.

I've stumbled upon an article with an interesting discussion in comments thanks to that, maybe it can be of interest for someone aspiringdad.wordpress.com/2008/01/30/understanding-hand-flapping-and-what-to-do-or-not-do-about-it/

Iolanthe, you may be particularly interested to read some of the comments there, especially about how grown up people with AS feel now.

Sarge, that kind of parental concern may be the best thing possible in such a case - being thrown into the claws of a psychologist's or otherwise forcibly changed to fit the normal image can often do nothing better then traumatized and mutilated minds, I've seen many people suffering from being misunderstood and rejected, wishing to be just accepted as they are, and those knowing they differ and fine with that.

[Tefazipipo]

A young lady who is my friend told me that she and her father have a degree of Asperger's. She said that one reason women seem to be fewer than men with this condition is parents set, whether consciously or not, different standards of behavior for girls than for boys. I've heard the phrase "boys will be boys" from sometimes amused, sometimes exasperated parents, more times than I can count. I've watched a couple with twins and they ignore behavior in the son that they scold in the daughter.

[Iolanthe]

Ooh, so many questions!

Firstly, thanks Aliantha for moving the thread. I did try to find a similar thread before I posted my first, but failed to find the one in here.

I have never observed any repetative limb movements in Patrick, but I will watch him more carefully from now on.

He does have a thing about numbers. He clock watches, particularly when it is time for C & I to go home (we always go at 6). Yesterday he wanted to know how old I was when my father died, how old will I be when Patrick is 18, then 80! He likes filling things in - his grandad gave him a pull out from the newspaper with the matches and winners of the European Cup to fill in - which he did. His big passion is Dr Who - he knows all the Doctors, and in which order they come - but then so does his brother who is 14 months younger. Frankly, he seemed like a normal little boy to me until this last couple of weeks - apart of course from the tantrums.

The tantrums. You should know that I only see him for about 2 hours a week during school time, and 3 hours during holiday time, although I hope to have him here for about 3 days on his own next week. They are always caused by him being told not to do something that he is doing, or by being told to do something he doesn't want to do. I've already described two - when he didn't want to try the clothes with the labels on, and when he wanted to make a calendar for the Christmas tree. Yesterday's was over him being told to stop jumping into the kiddy pool as his sister (nearly 1) was in it as well. He just carried on and his mother told him to get out. I heard him from indoors shouting "shut up" several times to his mother, which is when A stepped in, sat him down and got him calm again.

We had an episode here when he didn't want to sit in the chair I put out for him. I have two chairs that are slightly higher than the others and more suitable for the children to sit at the dining table.

My son has always treated both boys the same. If they are told not to do something and they don't stop he counts to 5. Philip, the younger one almost always obeys. Patrick will take it to the last possible moment, or not obey at all. Then it's the naughty step, but if he goes straight into a tantrum he gets sent up to his bedroom which just seems to exacerbate the problem.

[Menolly]

Hand flapping, pacing, hissing or humming, even hair twirling; all of these are known as stimming and are very much a sign of a potential ASD or SID. They can also take on a more individual trait. One 19 year old I know will constantly pull at a chewed piece of gum in his mouth, stretch it out, and then snap it back while being absorbed in a television program. I am convinced he does it subconsciously, although I have seen him catch himself at it and stop if I walked in to the room unexpectedly where he was doing it.

[Iolanthe]

Ah, hair twirling. My husband's aunt did it (the one who died not long ago aged 100), my daughter does it, and Patrick does it. Oh, and he also has a thing about ears. When he was smaller he used to suck his thumb and pull or hold the earlobe of whoever was holding him. Now I notice that he holds his own earlobe when the thumb is in. I never thought of these as unusual though.

[aliantha]

My friend's autistic daughter, who's 34, still does the pacing/muttering/hand flapping thing. She also pulls out her eyebrows. (I thought the daughter was 31, but found out differently this past weekend. )

[JazFusion]

It's not to say that every person who hand flaps, hums, paces, or twirls their hair is autistic. I'm still a hair twirler. Always have been. But it's when these repetitive motions are in conjunction with things like specialized interests (in my son's case, most kids his age like trains. He only likes crossing lights and couldn't care less about the actual trains themselves), social problems (most notably problems with peer play), and language delays.

That is still not to say that all of those things make a person autistic. I can listen to one song over and over for hours, I twirl my hair, I didn't speak until I was three years old, and I was very good at playing by myself. But being around my husband who has Asperger's and now my son who is high functioning autistic, I can see the differences, and similarities, between all of us.

My best piece of advice is to trust your instincts. I knew from the time my son was two months old that he was autistic. He never made eye contact even as a baby, and he was not in any way a cuddly baby. Rocking him was the only thing that would soothe him, and he didn't necessarily need me to do it for him. As he grew older, he just seemed different from the other children. I had him tested at 16 months, and the pediatric neurologist told me he didn't fit the criteria. But if my feelings continued, I could always have him tested again. I did, last year, when he was four. After a few days at the hospital, it was confirmed he was high functioning autistic. It was a relief to me, actually. Now he gets the help he needs at school to have the best education possible.

I hope this info helps you at all! Like I said, taking him to a specialist can only do good. Let us know what happens!

[Iolanthe]

I'll certainly let you know when there is a diagnosis. All speculation at the moment, but I'll certainly watch him much more closely from now on.

[Lefdmae Deemalr Effaeldm]

Certainly speculation, but at the moment some of it can be useful to you, at least I hope so - as a way to be more comfortable with such possibilities. If you've seen the stories from the site I linked above, many people deal with it well. A person with a diagnosis like this may lean towards the more normal behavior and quite successfully, up to being unrecognizable as someone who had it, or keep all that and be fine with it, and either of those ways can result in a good person.

And, if you're interested, I can try to provide some "from the inside" point of view, though hard to say how accurate. For instance, I thought on the idea of a calendar as a Christmas tree decoration, it looks basically valid to me. It could be a bit hard for a child to make one small enough to fit well because of all the tiny numbers, but with some help or serious effort I hardly see why it couldn't be done - or did I misunderstand something?

[deer of the dawn]

What Null posted reminded me of a friend's kid. He hardly said a word till he was about 4, then started speaking in sentences. Same with writing. Almost no writing, then in 2nd grade full, well-thought out sentences with capitalization and punctuation. He made up his own words for things (some of which we still use, like "spitch" meaning "a space between") and swear words ("Oh, package!!"). His teacher fussed and demanded he be medicated and tested. Medicating him during school resulted in him not being able to sleep at night. Oh, the anxiety his parents went through. He grew into a huge young man who would walk in circles around and around the dinner table, talking animatedly. These days he lives in a small city in his own rented house and does computer tech for a University. He writes poetry in meter. He has a good head on his shoulders. You never know.

[Iolanthe]

No, I'm doing no more research until I know what we are dealing with. I shall only get more and more worried and then not be able to sleep for thinking about what might be. Whatever he has, I'll deal with it when I know. Reading the thread Menolly started, and this thread, have helped enormously. I was really out of my depth when A told me that Patrick was being investigated for a behavioural disorder. Nothing like this has touched our family before.

It has not occurred to me at all to be uncomfortable with this. More like relief really, that there is a way forward, and opportunity to help him become whatever he is to become. I want my happy little boy back.

[Menolly]

Whatever is to be, keep in mind one very important thing, Iolanthe: Patrick was, is, and forever will be the same grandson you know and love, regardless of any future diagnoses. He will not change fundamentally; the only things that may change will be approaches towards directing him in to becoming an independent and functional member of society.

Another thing to keep in mind is technically, neurological disorders are not intentionally behavioral. If explanations for why certain things trigger inappropriate behaviors are discovered, coping mechanisms can be found and taught. There will be gains and set backs, as in anything. But with trial and error, Patrick will grow and thrive.

I have no doubt about that, with as loving a support network as you have shown he already has.

[sgt.null]

deer - so we odd nontalkers turn out to be poets

Effaeldm - i am so glad i was never on meds for my "condition."

i was sent to a headshrinker all through grade school though. i was also in speech class at a young age. (stutter and a lisp - i still do both when very tired but no one ever notices) i also had to take balance lessons. worked hard on that through my first year or so of grade school.

there is some suspicion that because my birth mom was on meds during her pregnancy with me that i had problems...

[Iolanthe]

We've had Patrick, on his own, since Tuesday evening and have had a lovely two full days with him; he goes back tomorrow.

No tantrums, although he had trouble getting to sleep on the first night.

We went into town on Thursday, and I was told to make it clear to him what he was to expect, so we made a list together of what I needed, plus a couple of things for him - paper to draw on and breakfast cerial. When he asked for anything else I simply said "Is it on the list?" and he happily accepted that he wasn't. I did buy him a treat that wasn't on the list.

But, I've discovered something else. He can play by ear, just like me and his father. Watching the Olympics, we've been singing the national anthem, and he asked me to play it. Next thing I know, I'm in the kitchen, he's picking out the first line on the piano! He can almost get all the way through it now, singing at the same time. He got the rhythm automatically. It's a shame that a piano for him is out of the question at the moment, no space at his parents' home and no money to buy one anyway. But, I've told him how clever he is, and that he has a very special gift. He seemed quite awed by this. I hope something may come of it in the future.

At the moment he's teaching the dog to play football

[Fist and Faith]

Awesome! Sounds like you're learning how to deal with the issues already. Things may be more difficult for him in various ways, but it might just need more planning and attention to detail.

[Menolly]

And warnings before transitions.

If he is one who needs to be told fifteen minutes before that it is time to change activities, do so every five minutes during those fifteen minutes to start. In time, warning him once fifteen to ten minutes before should become enough.

Meltdowns can occur pretty often for those who do not realize why they are frustrated, and "sudden" transitions can be a big trigger.

[Iolanthe]

Oh boy, I wish I'd read your post an hour earlier Menolly. Unfortunately I allowed him to stay up a bit longer to watch the tennis (because I wanted to watch it) and unfortunately we both got very excited at the end, so I had a very bouncy boy on a big high to shower and put to bed. I've managed to calm him down at last and he is in bed.

I've probably given him a lot more lee-way than he gets at home, but then I haven't had a 6 year old and a 1 year old to cope with as well.

We have progressed from "God Save the Queen" to "When the Saints go Marching In" - he is a Southampton supporter. Fist, I can't tell you how pleased I am to have discovered this musical ability. I know from my own experience that it can be a real confidence booster, and something very pleasurable to do on one's own. I will try to get him a small keyboard for Christmas, perhaps 2 octaves. Hopefully his repertoire will have progressed to more than 2 tunes by then.