Into his personal space

Hmmm…fear of germs, family of perfectionists. Have you considered obsessive compulsive disorder (OCD)? This tends to run in families. Also, the tendency for it to be set off by strep infections runs in families as well. (See the work of Dr. Susan Swedo at the National Institute of Health—available on the internet.) Cognitive behavior therapy is the standard approach for dealing with OCD, often (but not necessarily) with drugs. (Where strep induced, antibiotics are also used to the extent needed.) Having been through strep-induced OCD with my ds (now, thank God, for the most part over it, I would strongly recommend trying to go the CBT route before the medication approach.

I thought OCD had to have tics to be OCD like washing your hands 20 times before something or touching something a certain way 10 times before doing it. I was reading a sight about it but I was wondering if it starts in a milder way? He had an infection when he was a baby but he was a miserable baby from birth with some kind of silent reflux and he was prescribed cisapride.
What is the web address for the institute of health? and What is involved with CBT can you find out about it from there?
Thanks for the suggestion.
More details: It is also hard to get hold of his attention and get across an instruction but he’s highly mobile but not violent.
He can also be defiant or contradictory doesn’t take advice/correction at all well and falls apart at the seams when he gets upset (emotionally wired).
He gets angry and offended at the drop of a hat but he is not violent, rather timid instead.
He can’t get comfortable i.e. fidgets.
He has trouble with words saying what he wants to and writing backwards but some days this is OK (the writing) (dyslexic)
He is disorganised, makes a mess everywhere he goes, clumsy spills his drink most days.
Focussed gets REALLY focussed on something he is interested in it (could do it for hours) and has trouble with recalling what was said.
Puts on a brave front and is highly competitive he tries to manipulate things so he can win.
He doesn’t have night terrors anymore but things frighten him in his room at night and he doesn’t get to sleep till 10:30/11pm getting up all the time with things he’s thought of.
Perhaps the symptoms for ADD/ADHD can be a part of other disorders?
Sorry for this rather disorganised list it’s not 100% complete, I thought I’d include it so as not to just focus on one thing.
We homeschool so although it’s tiring for me we don’t have the sad school issues to deal with I’ve been reading about here and he can learn at his own pace and style and he is coming along slowly with everything e.g. he learns better inside his head (mental and verbal) if this makes sense.
We have a good relationship he and I and hugs and cuddles solve a lot of problems also my reign on my patience helps him with his somewhat but not completely.
I appreciate your help.
Thanks from Janette

Some of that can be ADD/ADHD related. I’m ADD/ADHD and I react strongly to an unexpected touch. It suprises me beyond reason and I jump and then get angry.

Your e-mail doesn’t sound weird. It sounds as if you’re observing your son and seeing some things in him and about him that are alerting you. Some people are perfectionists. Some people can be compulsive about their perfectionism.

Do the people on his father’s side have jobs and happy lives? There’s a place for perfectionists in the world and there will be for your son.

Thanks for the reassurance Sara. Yes they have grown up OK although you can see that it eats them up a bit and effects others around them. This is ok though it just can get tiring when it’s about everything they want a certain way and you really don’t think it is important enough to get angry or start conflict over. This happens with my husband as well but as with my ds I have learned better how to speak up about it and get them to think about what they are saying/getting cross about.

I agree with you that there is a place for perfectionists and I can see the potential strengths there and the better the management and awareness the stronger the strengths could be as with many other of my ds’s traits.

It sounds like he has some LD related to directionality (writing backwards). Audiblox is a program that you can do at home (pretty inexpensive) that will address that particular issue. www.audiblox2000.com

It also sounds like he has some sensory integration issues. my son used to fidget, was emotionally wired and was more clumsy before we addressed these specific issues. Those things are gone now. Read, “The Out of Sync Child.” It will tell you how to provide the right sensory diet for him. This helped my son alot. It sounds as though you do this instinctively to some degree already.

My son was also a very difficult baby, the doctor just said colic but I suspect something more. He had a traumatic birth.

I have a feeling that one of his biggest strengths is YOU…
best wishes!

I believe that some people develop these perfectionist tendencies to control their environment which can seem out of control when you are LD/ADD. It can be something of a coping mechanism. In the extreme form it is OCD.

I have two friends who grew up LD that are both like this. They don’t like change, everything has to be just so.

They are wonderful, high functioning, super organized people. I have learned to not spring things on my one good friend. She needs to have a plan way ahead of time. In the beginning I just didn’t understand. She told me recently she wasn’t always like this. She had a great deal of trouble with organization when she was younger.

Take a look at this: http://intramural.nimh.nih.gov/research/pdn/web.htm

Also, you can find more information by doing a search on Susan Swedo +PANDAS in Google. Pandas==pediatric autoimmune neurological disorder associated with strep. I don’t have a link for this (will try later), but a pretty solid study out of Yale also found a link between strep and ADHD.

Will try to find something on CBT.

My ds did CBT with a practice that dealt with a lot of Pandas children—they felt that strep induced OCD or tics were atypical of those that were not strep induced.

The washing hand 10 times thing is classical OCD ritualistic behavior—not a tic, but sometimes tics/OCD behavior are hard to differentiate and in Pandas kids they are often very intertwined (as they were in my ds, who was diagnosed Pandas-chronic by the NIH). My ds suddenly developed all the pants, socks thing (had to be perfectly evened out), but these are almost all gone. Still reties his shoes constantly. A stray pencil dot on a piece of paper was an imperfection he could not stand. That’s gone now, but filling in the bubbles on a standardized test takes ages. After one strep episode he developed extreme ADHD—luckily it only lasted 2 months or so.

I could on and on, but it’s really too weird and I’ve tried to put a lot of it out of mind now that a combination of CBT and maturity have taken away the worst bits.

Ds also had preexisting language problems due to auditory processing, which we’ve also almost remediated thanks to Fastforward, lots of language therapy, as well as medication (Strattera at present) for ADD.

Your ds has a lot of issues—make sure the doctor is not fixated on finding a single diagnosis that explains them all. Although there could be one, it is possible to have two unrelated problems at the same time. If you’re looking just for a single diagnosis that explains both problems the dx could be way off base.

all sounds like SID issues…why don’t you have him take the SIPT w/ an OT!? Then find out for sure - then get a treatment plan going!

Loves,
S

Janette, You will find more here on a study finding a connection between strep and ADHD:

http://tourettenowwhat.tripod.com/pandas.htm

Thanks for all this I will look forward to hearing more about the CBT, can you tell me how it works? I am getting a better picture now of things and this group has been great for that. We did some work with the child health services here in Australia when he was younger. I guess I am researching this now that he is older to give me a frame of reference rather than a dx and also to make it more real with my dh who has some similar traits but hidden more by maturity.
We have started doing aspects of Vision Therapy and I am looking forward to getting the out of sync books. I will check out the various sites people have listed THANKS!

He is also very defiant sounds just like that ODD I read about; blames others/me for his mistakes etc etc but he doesn’t want to he says afterwards sobbing (not fake) we had a tiring day today with this but we have discussed setting up a trigger where I interrupt him with a reminder when he starts to get going I say “You’re doing it.” in a gentle sing sing voice and he remembers and stops himself. He wanted to practice and knew how, it worked a few times we’ll see how we go tomorrow. My husband also needs triggers like this. I am feeling very sandwiched lately. Just as well there’s prayer and good emails to support me.
Thanks for all this, Janette

That’s REALLY nice, you don’t know how much your email affected me, right when I needed it.
I HAD to write and say THANK YOU!

Well in my research I have learned that they need organisation. My son is so disorganised though leaving a trail of mess wherever he goes? How does that fit in and my dh is also not very organised but it is as though they are both unaware of it like a blind spot. But they are aware of others mess, perhaps some latch on to it and intuitively know it will help them cope? My ds is good with intuition but doesn’t use it to help himself yet, perhaps that will come with maturity.
Thanks for those links and messages I will look into them.