From NMiller...

Guest
From Nancy on the main board:

I rarely come here anymore other than to occasionally lurk. Since my doctor found a
medication combination for me that stabilized my condition, I have been able to work. I
have 3 part-time jobs, two of which are my own businesses from home and am slowly
getting my bills caught up from my extended period of not being able to work

I keep up with a few of you via ICQ and wanted to come back and give the rest of you
an update on my difficult child's progress because it is remarkable and, I hope, offer hope and
encouragement to those of you in the middle of crises.

BACKGROUND:
At 3, my son was showing signs of serious emotional disturbance, but I couldn't find a
therapist willing to work with a child so young. At 5, he was vocalizing concerns about
the "monsters inside of him". At 7, he was a danger to me, having tried to stab me on
several occasions with various implements from knives to screwdrivers. By this time I
had had him in therapy for a couple of years. I had the therapist and the school
officials telling me he was ADD and I was in denial. But, I saw a boy who held his act
together for an hour, yet was needing constant restraints at home to keep him from
destroying property and harming me or himself.

I tried everything. I took him to a different therapist. I took him to a pediatric
neurologist. I cried. I went to a therapist myself.

Finally, just before my son's 8th birthday, I realized I could no longer do it alone. I had
him pinned to the floor in restraints and I knew I could no longer do this. I couldn't help
him and I had to find someone who could

That night, I took him to a psychiatric hospital and admitted him. The hardest thing I ever
did was to leave my little boy on a psychiatric ward. I had gotten my then boyfriend to drive
us and I was glad to have him drive me home because I cried my eyes out on the way
home and for days afterwards. Three days later, I was told by the child psychiatrist
that my son was extremely disturbed, suffering from PTSD and AD, and that he needed
to be hospitalized for treatment.

That started what has turned out to be 5 years of treatment, so far. He spent 30 days
in that hospital, stabilizing on medications. He was transferred to a children's psychiatric hospital,
where he stayed for 7 months. Then I got him in an Episcopal residential treatment
center on a scholarship since we didn't qualify for any other financial help. He was
there for over 2 years when they moved him into their group home. He left there for a
therapeutic foster home, which didn't work out. Since then, for the last year, he has
been in an independent living group home. He is now 13 years old and is doing
beautifully.

NOW FOR THE HOPE AND INFORMATION
The first two psychiatric hospitals were paid for by insurance. The deductible, which was
enormous ($200/day) was written off when my ex-husband tried to file for bankruptcy
(long story there that I won't go into). The scholarship at the residential treatment
center paid for about 1/3 of the cost and I still owe them thousands of dollars, but I
pay as best I can.

While he was in the Episcopal group home, I went into crisis and ended up in the psychiatric
hospital a couple of times myself. The state run mental health clinic I attend referred
us into a program that is unique to my county. It is a committee made up of
decision-makers from several agencies. Our case was presented to them and they
recommended us to a state-run agency called the Governor's Office Continuum of Care
for Emotionally Disturbed Children. Only a few new cases are taken by Continuum each
year and we were lucky enough to be accepted.

Continuum functions as a case management agency. They filed for SSI and Medicaid on
his behalf and got it. The SSI check goes to them, but they pay for all his expenses
that Medicaid doesn't pay for. They located the current placement in the county where
I live (before, he had been a 5 hour trip away -- a trip I made every other weekend for
3 years). Our caseworker attends the IEP meetings on his behalf. She works with the
placement facility, the mental health agency, the school, etc. She arranges for any and
all services that we need as a family or that he needs as an individual.

Thanks to our caseworker and the mental health clinic, he was accepted into a pilot
program at school. There are only a few such programs in the US and we were able to
get my son into one it's first year of operation. It is a day treatment classroom
co-sponsored by the school district and the mental health center. There is a full-time
therapist assigned to this class of children, along with 4 specially trained teachers.
There are academics taught, although the emphasis is on behavioral modification. They
are housed in a facility away from the public schools (actually in an older school that is
now used for school admin offices, so they have a gym to themselves as well as other
normal school facilities). They have one room that is filled with "prizes" that they can
purchase with points that they earn for good behavior and academic work. They have
academics, a lot of physical activities, group therapy and individual therapy daily. The
therapist also holds weekly family sessions for each child and his/her family. Most of the
children still live at home. My son is the only one living in a group home.

Between this program and the independent living skills group home, there is a lot of
consistency and coordination. The point system is the same. The group home staff and
the teachers communicate daily. I have watched my son thrive and grow between
these two wonderful programs.

His behavior is mostly under control. He's not perfect of couse. He acts out under
stress still. But he's learning to control himself without medications. He is becoming more and
more like a normal teenager. We are hoping to mainstream him within the next year. He
will be mainstreamed for one class at a time until he is fully mainstreamed.

The programs we have been involved with have been local. However, I will be glad to
give their contact names and numbers to anyone who wants to research to see if
maybe there
is a similar program in their state. Please feel free to email me and I'll answer any
questions I can.

There is hope out there.

Nancy


[This message has been edited by Joes Mom (edited 12-27-1999).]
 

Guest
Joe's Mom,
I'm happy for you, but it strikes me as such a shame that you have not had your son live with you for so many years! How your heart must break. We're trying hard to keep our daughter at home. She spent the month of August in and out of hospitals. I'm glad you found a good one. The first one we went to told us she could control it without medications. We finally have found a doctor we trust and we're starting to see results. Thank god you had good people looking after your son. We need to push for more local services that aren't so dramatic on a family. God bless you and all you've been through!

------------------
Tracy F.
difficult child daughter, age 9 ODD and seizures. Currently on 600 mg. Tegretol/day and 37.5 mg Zoloft/day. Looking at increasing the Tegretol soon.
3 easy child's: 9 yo Jake(twin to difficult child), 7 yo Claire, and 3 yo Baxter
husband had anxiety disorder with Obsessive Compulsive Disorder (OCD) - off medications and better for 3 years
 

Guest
This is a copy of NMiller's post from the main board... see topic.
 
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