nancy grace

January 20, 2008

Dear Grace,

I sure hope my question didn't sound like one of those accusations. I myself

always wanted a large family

of 5 or 6. Just realized I didn't have the capacity for it. Our son's

difficulties began very early, and his ocd

has been very explosive, so it has just about undone me. Anyway, thank you so

much for sharing your

specifics with us. I can really relate to the stuff you wrote about your

husband. It sounds like I could have

written it - it is so similar to my husband. I also think my husband just gets

frustrated and lets it out wrong.

You've been so far! Keep walking, sister. I'm glad for you (and them) that you

have three kids without these types of struggles.

You are a huge encouragement to so many people in this group. Thanks for using

your experiences to help all of us.

Hugs,

Leigh Anne

Re: avoiding church

Hi Leigh Anne,

Thanks for your understanding (re spouses). My 19, 15, and 10 yr olds

have OCD diagnoses, not to say plenty other neuro-stuff

does not go on too. My 19 and 15 yr old girls have been hospitalized

due to OCD, one at UCLA, other at Menninger (our insurance pretty

generous, but after years of haggling to realize non-specialty

treatment a waste of money). They both still struggle, have their own

ways and timetable, but are better. It is the comorbidities (one

mood disorder spectrum, the other aspie spectrum) that complicate

treatment. My 10 yr old son is on homebound tutoring now, as his ocd

kicked in severe just this year. My 13, 8, and 5 yr olds seem fine.

We had a normal period of family life before my oldest started having

symptoms (did not know it was ocd and I was vacuuming her room

washing her bedding etc) around 7th grade when she started school

after homeschooling. The next 4 children already here at that point

and 2nd daughter had begun homeschooling. I assumed all was well,

though my 2nd daughter (placid and exceedingly shy as baby/toddler)

was seeming more odd with screaming spells and sensory defensiveness.

Her pediatrician suggested autism-but did not quite fit since she had

normal if not precocious speech early on. My 6th(little surprise

blessing) was not born yet.

This is what I try to explain about our large family-we assumed all

was well or would be well (b/c I infer at times a sense of blame or

irresponsibility attributed to us for having 3 kids with ocd-maybe

just among counselors or " dud " therapists we stumbled upon

initially).

When I learned OCD was genetic to a degree, I got us and extended

family enrolled in a university research study (I also have identical

twin who functions poorly w/preference to be alone and dh has brother

similar) blood draws and interviews. I also thought it might help my

dh get it. Kept trying to find right therapy within driving distance

and covered by insurance. Our p-doc is out of pocket. It is easier to

get customized help with practitioner not in managed care.

It was kind of a blow to me when my son started having such classic

symptoms, he'd had some transient symptoms in past that I hoped were

extent of it. I was on his case too, " how can you let OCD do

this when you have seen what your sister's have gone through? " But

OCD does not reason that way.

I'm always running to appointments. Have two 504/potentially IEP's

(for 10 and 15 yr old) in development. My oldest (19) cannot attend

away college-though conditionally accepted, so trying to fit one or

two community college courses (starting slow) into her schedule (she

does not drive yet and was literally homebound if not room-bound

before Menninger) plus her therapy. Therapy for my son. Therapy for

my 15 yr old. All three see a psychiatrist as well. I actually

discontinued therapy apptments for my 15 yr old in Oct (my

own health crisis) and she seems better mood-wise due to reduced

stress!

I don't know where to focus sometimes, but fortunately my other 3 do

just fine.

The hardest has been not being on same page with my husband, I know

this has been hard for our affected kids. So I can't say, as I'd wish

to, " it is just the ocd, not family dynamics " . My husband trys but

repeatedly lapses into frustration, blaming (often me) or temper over

some of the behaviors and/or limitations. Sometimes I think is more

frustration than true sentiments that come out, but my kids cannot be

expected to see that. So the affected kids avoid him. (And the other

siblings wary). They are less inclined to see OCD as the culprit at

times b/c angry or hurt over dad. We've done the family therapy, but

still he has these lapses. It so happens that he needs a strict

routine and planned expectations to function well himself so all the

disruptions stressful. He took up running which helps, I do see a

change it is like medication for him. Yet with a recent injury the

mood/temper flared again. Not to say I have no part in passing on

some ocd or neuro-dysfunction. My dh and I both fit into shadow

syndrome category I think.

nancy grace

>

> ,

> How many kids do you have? three with ocd? wow. I have three

kids, and my oldest has ocd. my youngest (age 3) is showing signs,

and I'm scared to death. We've been through so much, just can't

imagine going through it all again with her. . .

> Anyway, I totally understand what you're saying about not being

able to control all the ways it affects your family. Not worth it to

try to 'make' it happen/ going to church and all. My husband also

tends to see it that i've caved in, and that it is a defiance issue,

though it clearly isn't. That can be so tough/ being on different

pages with your spouse. We're slowly working it all through.

> I think you're right - the important things will hopefully fall

back into place as the ocd is treated!

> Good luck with all!

> Leigh Anne

>

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January 20, 2008

Not at all Leigh Anne. This list and members are great support. It's

been mainly when dealing with people unfamiliar with the biological

or neuropsychiatric types of anxiety/behavioral disorders (like early

in our treatment attempts) that they tend to first look for family

causes or anything that represents a bit of difference from the norm.

It could be homeschooling, or daycare, or divorce, or moving overseas

or across country, or strict religious observance, or whatever. I

remeber a big concern when we started to lok for rement for my oldest

aughter was " does she have any privacy-does she have her own room? "

Something " different " becomes the mistaken focus or arena for " cure "

b/c there is little understanding the OCD can occur under any

circumstances-it is in the brain-not from an external source.

The fact that I have 3 " well " kids (do hope they stay that way..)

helps b/c it kind of shows me that it is not necessarily faulty

parenting! Plus I get a kick out of just basic normal things they do

(when always dealing with ocd otherwise). I'm not likely to give them

a hard time for being late to school, or having a messy room, or not

always tuning homework in on time. Not too long ago my 13 yr old was

told (by director of her independent study program) she needs to

buckle down and get serious if she wants to progress to being a great

highschool student. This is because she usually has an assignment or

two unfinished and just finishes it up when she goes on campus for

her appointment. She gets mainly A's a couple B's. I told her never

mind, she'd doing fine and that the director does not know that she

is very responsible, helping at home with my 5 yr old and with chores

b/c I am so busy with the other kid's needs. I let her sleep late

when she can and I let my 8 yr old miss school now then b/c he is

tired. In other words I am not going to encourage any perfectionism

or hand wringing over minor things!(which my dh does do to some

extent).

nancy grace

>

> Dear Grace,

>

> I sure hope my question didn't sound like one of those

accusations. I myself always wanted a large family

> of 5 or 6. Just realized I didn't have the capacity for it. Our

son's difficulties began very early, and his ocd

> has been very explosive, so it has just about undone me. Anyway,

thank you so much for sharing your

> specifics with us. I can really relate to the stuff you wrote

about your husband. It sounds like I could have

> written it - it is so similar to my husband. I also think my

husband just gets frustrated and lets it out wrong.

>

> You've been so far! Keep walking, sister. I'm glad for you (and

them) that you have three kids without these types of struggles.

>

> You are a huge encouragement to so many people in this group.

Thanks for using your experiences to help all of us.

>

> Hugs,

> Leigh Anne

>

> >

>

January 24, 2008

Yep, Grace,

I feel like we've been blamed for our son's behavior because of our parenting

style/'not tough enough.' Like you, it helps me sort this through to know I

have at least one healthy child who doesn't exhibit any of this anxiety junk,

just reels from being the brunt of it a large amount of time. . .

Anyway, I'm so glad you have the fun stuff with your unaffected kids to help

keep you going.

And way to go! Such wisdom about not pushing any type of perfectionism with

them.

Have a good one,

Leigh Anne

Re: nancy grace