Re: Reflections and questions

[Guest guest]

HI ph:

One of the meanest things about OCD is how it tricks not only the sufferer

but those who love them and care for them. The steps we take initially to

help with OCD unfortunately often do not help to reduce their symptoms.

THey might help temporarily with a specific meltdown, but soon we are all

walking on eggshells waiting for the next meltdown to rear its ugly head.

There are a number of books which help family members learn how to cope

with OCD. Dr. Chansky's book, " Freeing Your Child From OCD " is excellent

and so is Dr. Pinto Wagner's book " UP and Down the Worry Hill " . The gold

standard for OCD treatment is Dr. March and Mulle's book,

" O_C_D_ in Children and Adolescents " . Another book that helped me to help

Steve was Dr. Lee Baer's book " Getting Control " . " O_C_D_ New Help for the

Family " by Dr. Herbert Gravitz does a great job of explaining the need to

re-orient our approach to dealing with a loved one's OCD.

The erasing so much as to make holes in the paper is a textbook symptom of

OCD. It is a ritual, so is redoing over and over. When you are trying to

tear away from his rituals, it causes a spike in anxiety. ONe of

the most helpful things is to teach about OCD so he knows it is not

him but it is OCD that is causing the outbursts. Externalizing OCD really

helps the whole family. Also meeting other kids with OCD can really help

normalize things.

Steve was a big washer, but I would never say he was clean nor tidy. We

joke that his OCD washing is not a transferable skill. As hard as it seems

at first, using humor to combat OCD has been essential for our family. It

really takes the pressure off the situation and helps the family to learn

we are all on the same side against OCD. This reduces the power of OCD to

disrupt the family as it drives a wedge between family members who are

confused, hurt and frightened.

The freezing you mention is often a form of avoidance which is a very

common OCD symptom. OCD is an anxiety disorder, however its best treatment

is a bit different from other anxiety disorders.

YOu are so right we learn to accommodate to our kids and their symptoms.

However seeing them as much more than their OCD is very important to their

recovery. OCD can hide their normal personalities and interests as it

takes over their lives and runs things. THey are not being the squeaky

wheel but rather are ill and suffering. To get well their strengths need

to be emphasized and encouraged, our kids are often amazingly strong and

determined. As far as deciding whether something was OCD or not, when

Steve was very ill I would treat everything as if it was probably OCD, that

way I made far fewer mistakes. However once I learned how to treat OCD, it

really was not important. Behaviors were dealt with based on whether they

were acceptable or not.

We found it necessary to combine a professional parenting program with

Steve's medication and E & RP to reinforce his changing behavior. We had to

change our approach to his recovery quite markedly. It was amazing how

much his OCD was bossing us around, we had to change a lot too.

When our kids are very ill we do need to adjust our standards. As they

recover however we can re-adjust them. We have the same expectations of

Steve as we have for his NT older brother, but when Steve does not respond

as hoped we are realistic about how he may have difficulties. Society does

not alter its expectations of our kids, so in our family we have decided to

try to reflect society as much as necessary to prepare Steve for adult life

out in the world.

Good luck on your journey ph, is so lucky to have such a caring

and involved family, fighting for him the whole way. Take care, aloha,

Kathy (H)

kathyh@...

At 01:55 PM 12/30/2000 -0700, you wrote:

>In a message dated 12/29/2000, <j.monnens@...> wrote:

>

>> Welcome to the list. Getting to the right diagnosis and treatment is

>probably

>> the most frustrating thing we parents have to deal with. I'm curious to

>know if

>> you have considered aspergers as a possible diagnosis for your son

> <....>

>> What makes you think your son has OCD?

>

>These are good points and I have spent much of the last 12 hours thinking

>about this and reading at websites, etc. My partner wondered about

>aspergers but although does have some of those qualities and many of

>the qualities of a child with ADD, he has always demonstrated exceptional

>verbal and abstract reasoning skills, so much so that he easily compensated

>for what we now know are serious difficulties with certain mechanical skills

>such as writing and math facts. His grades were high right through grade

>three in both french and english until grade four. If he could get by on

>his ability to express himself in artwork and verbally he would be fine. He

>is currently on an IPP which makes very limited demands of him in terms of

>completing any given assignment or project. Typically, if he finishes an

>assignment, two-thirds are done to painstaking perfection and one third is

>entirely fudged, dashed off or omitted. If he does not understand an

>assignment throughly he will not even attempt it which is why he requires an

>aide. It's not uncommon to find him erasing right through the paper or

>amassing a pile of perfectly acceptable drawings crumpled into little balls

>because some minor thing was not right. Criticism or praise are almost

>impossible to offer him and I have been learning ways of encouraging him

>indirectly which does seem to help. It is nearly impossible to set him to a

>task which he is anxious about or tear him from one he has set his mind to.

>It looks as if he suffers from acute anxiety which spirals off into either

>oppositional or obssessive behaviour, and I guess I am not sure where lines

>are to be drawn or what is at the root of it.

>

>I looked back over his discharge letter yesterday (to be honest, I did not

>want to deal with a new diagnosis last fall and wanted a break from the

>intensity of the inpateinet and out patient assessments). He is described

>as meeting the criteria for generalized anxiety disorder, verging on ODD due

>to the anxiety. The more I understand about OCD the more I think he falls

>in that range too. I guess one tends to think of the compulsions when one

>thinks of OCD. is definitely more obssessive. He does not like

>contamination of his food or possessions, but personal cleanliness is not a

>fault I would accuse him of <sigh>. We have to be on top of him for routine

>hygiene and to some extent I think the fact that he has serious psoriasis on

>his scalp and back contribute to his dislike of soap as it irritates his

>skin. He is fanatical about what he will and won't wear and always has been

>(no button down shirts in his closet), if he likes an outfit one literally

>has to peel it off of him. When I compare notes with my friend with an OCD

>child the similarities are striking in areas that I thought, as he once did,

>ruled out OCD.

>

>So here are my questions, especially for parents of kids with multiple

>diagnoses:

>1) If obssessions create anxiety in many OCD kids is it possible that the

>anxiety causes the child to freeze (refuse to start a project that worries

>him beacuse he is afraid it won't be perfect), looking more like an anxiety

>disorder? That is a chicken and egg question I suppose.

>2) If a child has always been difficult, fussy and particular as it seems

>many (though not all) of our kids have, do we not as families tend to

>accomodate the " squeaky wheel " so as to have more peace and actually

>accomplish tasks (like getting out of the house)? So when is an obssession

>or a compulsion more than " just " ? Whenever we are asked how things

>are at home our standards are different for than they are for his

>sister and we find ourselves saying " Not bad, for Tom " , in other words you

>lose perspective if this has always been going on. Yet when things are

>really bad they are unbearable and we (and his teachers) know he has never

>been under adequate professional observation when he was at his worst.

>

>I'm sorry to be so long winded. I would really appreciate some feedback.

>My partner and I have always joked about our own milder

>obssessive-compulsive tendencies which I think many people tend to do. Now

>I am trying to see our son in a broader perspective and hopefully find some

>direction to actually help him. He can't just tread water forever.

>Thank you,

>ph

>