Re: My son is suffering. Please help!

[Guest guest]

At 06:17 AM 12/31/00 EST, you wrote:

>Hello..

>

>This is my first post to the group. I am writing about my 20 year old son,

>Brad,

>I would like to take him to a neurologist, but before I do that I'd like

some

>opinions here first. Does this sound at all like OCD? If so does it sound

>full-blown enough to warrant attention, or could I be overreacting? Please

>help!

>

--

Hello & welcome. You have come to a place where you will find lots of good

advice & support! I have a 10 yr old son with Asperger's, and 18 yr old

daughter with OCD & mild Tourette's, and three other kids with sensory

issues & " quirks " !

You wondered if Brad might have OCD -- he certainly has some OCD behaviors.

Whether everyone with OCD behaviors has them for the same neurological

reasons is something scientists don't seem to know - but we do know that

OCD often goes along with autism spectrum disorders.

I'll leave the really good advice to others on this list (because they

really know how to do it!) but I'm wondering if you have ever read the book

" There's a Boy in Here " by Judy Barron & Barron? Judy is 's mom,

and is now a grown man. They each tell their experience of 's

growing up years, and does a great job of explaining his OCDish

behaviors & thinking. I thought it was fascinating. I bet you and Brad

could write that story yourselves!

You wondered if Brad's difficulties warrant attention - and I think yes,

they do, if they are causing him & his family pain! And about your

overeacting - well, living with these difficulties is crazy-making for

those who love people with NBDs. All of us on this list have been where you

are in some fashion, and we understand -- so please, keep writing & tell us

how it's going for you & Brad. We'll be waiting! -- Vicki in Montana

[Guest guest]

Please remove me from this group. I simply can't keep up with the E-mails.

Thanks

[Guest guest]

HI :

Welcome to the list. Many of us have also posted here with tears in our

eyes, blurring our words, and bathing our hearts. I am not a doc, just an

OCD mom. Also it is not possible to diagnose OCD on line. However,

figuring out OCD, once you have identified some symptoms can be fairly

clear cut. Nevertheless many with OCD spend years undiagnosed or

misdiagnosed.

I actually diagnosed my son after reading the DSM-IV criteria on the

INternet. He has pretty classic symptoms (or had before effective

treatment) of handwashing and repeating physical compulsions. I was

devastated when I read that behind these behaviors was so much anxiety and

obsessing.

What you have described are behaviors which are accompanied by high levels

of anxiety. This is very typical of OCD. OFten people who are autistic do

repetitive, perseverating behaviors but more for self soothing or possibly

more on the impulsive side. You are describing a lot of anxiety and

considerable reassurance seeking which is very common in OCD. It is quite

possible that you son has OCD together with his other dxs. My son has

three DSM-IV dxs, and there are other parents on the list who have kids

with more comorbidities than that.

What helps is cognitive behavior therapy (CBT) with exposure and response

prevention (E & RP). It can be hard to find qualified therapists but please

know that there is a way out of this for your son. ERP is considered a

robust form of therapy which can be customized considerably and still be

effective. Researchers have also studied doing this therapy with mentally

handicapped and it has worked well. YOu might be able to get copies of

such research papers from the Wisconsin OCD Information Center and take

this to your son's docs and get them to help. ALso using the March

protocol as described in Dr. March and Mulle's book, " OBsessive

COmpulsive Disorder in Children and Adolescents " , is something you might

want to discuss with your son's docs.

Many of our kids are also on medications for OCD, SSRIs are the usual ones.

My son, Steve, is now on his second SSRI, Luvox, after Paxil pooped out

after about 18-24 months. YOu can check out the OCF website for more

information about OCD meds for children and adults. OUr files on the

egroups site also have valuable information.

Good luck, take care, aloha, Kathy (H)

kathyh@...

AM 12/31/2000 EST, you wrote:

>Hello..

>

>This is my first post to the group. I am writing about my 20 year old son,

>Brad, who is mildly/moderately mentally handicapped (Full Scale IQ, 67). He

>has been formally diagnosed autistic (age 8), but he also has symptoms that

>I'm concerned might be OCD or something else entirely. He has been

>exhibiting unusual behaviors since the age of 12... I'm so worried and I

hope

>someone can help me figure out what is going on!

>

>His 'odd' behaviors:

>

>1.) Checking doors to make sure they are locked and nothing is dropped on

>floor upon entering and leaving house (approx. 1 - 2 minutes at a time)

>

>2.) Opening and closing door several times upon entering bedroom (approx. 15

>seconds - he only does this occasionally.)

>

>3.) Staring at answering machine to make sure it is turned on (approx. 1 - 2

>min; this happens several times throughout the day.)

>

>4.) Repeating something he said if he doesn't feel acknowledged or

>understood; this doesn't happen excessively, maybe 3 times per conversation

>with a distracted listener as his mom!

>

>5.) Fears that if his brothers don't screw the cap on tight enough on the OJ

>in the fridge, the OJ might drip down and leak onto his saran-wrapped

>leftovers. (No contamination fear it seems - more that he just doesn't

" like "

>the idea of OJ making friends with his pancakes.). He is not overly neat or

>tidy either.

>

>6.) Standing by phone waiting for call he is expecting; getting very

>distraught and cranky if person doesn't call. It ruins his entire day.

>

>7.) When he gets a phone call from friend, he is afraid he might not have

>said something to the person " correctly " or " nicely " enough, or that he said

>something to make that other person mad. He frequently needs me to assure

>him that he didn't make the person mad.

>

>8.) He seems uncomfortable unless I directly acknowledge something he says,

>either by paraphrasing or responding directly to what he just said. Like

>he'll say, " The birds out there are beautiful " , and if I say, " Oh yeah

that's

>true...by the way Jessie is coming home today " ...he gets very uptight and

>will repeat, " Did you hear me, mom? I said the birds out there are

>beautiful. " So unless I repeat what he just said or carry the phrase with

> " Yes! The birds ARE beautiful! " his body gets all tense and he'll find some

>way during the middle of the conversation to shift the topic back to what he

>was saying. It doesn't seem like an overt thing most of the time...he just

>gets withdrawn/sulky/anxious if I don't immediately acknowledge him (This

>happens quite often - I can't tell if it's part of his intellectual handicap

>or not). When it is time to say " goodbye " , he says " bye " and after I say

> " bye " he walks out the door and says another " bye " - that type of thing.

>

>9.) Fears that a salesperson knocking on the door might mean that that

person

>is 'after' him and bothering him 'on purpose'. He frequently needs

assurance

>that it is just a sales pitch and nothing else. (I notice frequently he

seems

>very upset about something, but often there is something about my words that

>will soothe him - as if my assurance that everything is OK is his only

>connection with reality. I TRULY believe that he is smart enough to know

>this on his own; that after so many reassurances he will know that no one is

> " out to get " him. But after trying to see it from his perspective, as a

>mentally handicapped person with various oversensitivities and difficulties

>in abstract thinking, I realize how terrifying the world must be for him.

And

>my heart aches as I can't peek into his little world and know exactly what

is

>going on. Maybe I let him watch too many scary TV shows!

>

>i am crying as I write this. my son is such a lovable person and tries so

>hard. I feel that much of his behavior is a desire to be liked and socially

>accepted in a world that must seem incredibly cruel and confusing to him.

>

>I would like to take him to a neurologist, but before I do that I'd like

some

>opinions here first. Does this sound at all like OCD? If so does it sound

>full-blown enough to warrant attention, or could I be overreacting? Please

>help!

>

>

>

>

>

>HMomof3@...

[Guest guest]

----- Original Message -----

From: <cindyhmomof3@...>

> This is my first post to the group. I am writing about my 20 year old

son,

> Brad, who is mildly/moderately mentally handicapped (Full Scale IQ, 67).

He

> has been formally diagnosed autistic (age 8), but he also has symptoms

that

> I'm concerned might be OCD or something else entirely. He has been

> exhibiting unusual behaviors since the age of 12... I'm so worried and I

hope

> someone can help me figure out what is going on!

>

,

Welcome to the group. It can be really hard when we can't share the

internal experiences of someone who is special, and feel at a loss about how

to help them.

Your son's behaviors do have an OCD flavor, but, as I mentioned in my last

post, some behaviors can be part of different disorders. People with MR and

PDD often have stereotypies, which are repetitive movements and behaviors,

have greater needs for reassurance, and have fixed routines and rituals.

Sometimes, it is their way of keeping the world manageable and within their

control.

Does your son have an MR/PDD specialist that knows him (or his records)

well? I would suggest that this person might be the first to approach

regarding a differential diagnosis. If these behaviors do not fit in with

the MR/PDD, I would then seek an OCD specialist. Both of these should be

able to give you suggestions on how to help your son with these behaviors.

Take care,

Aureen Wagner, Ph.D.