So... last month at our monthly med management meeting our psychiatrist recommend this outpatient program to us called Child Intensive Outpatient Program at St. Mary's Hospital because she had no other suggestions aside from upping the meds, and since she's unwilling to give my daughter any kind of assessment herself (what was the point of going to med school ?) I was kind of interested although it happens during the school day so she'd be taken out of school for this. Which is not something I am fond of. 11am-3pm for at least 2 weeks. If she were having problems in school absolutely would I jump at this program. So I got the referral and spoke to the nurse who assists in running it, on the phone, just to get more info on it because my daughters shrink had very little on it and wasn't very familiar with it.

I must say they were awesome there!! We went to an intake meeting just so they'd have everything ready if we do decide to do this. I felt like they really got my concerns and worries, but once again there's was nothing they could really do.This program pretty much just helps people get and find the services and resources they need to manage their special needs children...services and resources I already have. Besides they would not make any kind official diagnosis if she does has some kind of mood disorder they would just say mood disorder and leave it at that...I myself would like to know which mood disorder I am dealing with if she does has one. They did suggest the neuropsych exam get done because it'll will   should give us some answers... which we've ...OK ...I'VE been procrastinating on.


If she was physically ill doctors would be going out of there way to find out what's going on, but since its mental and not physical they don't want to do anything but wait. So instead of finding out whats wrong now so we can keep it from over taking and ruining her life. With her intellectual disability the more we know now the more we can help her learn now how to deal with it before its gets out of control that is the most important thing for us.....and of course on the off chance (ha!) she's got nothing wrong with her I wouldn't have to needlessly medicate her.

Seeing the psychiatrist on Tuesday. Olivia's IEP is coming up the following Tuesday so hopefully there will be more then.!

September 15, 2010

Well, I must say that there isn't much to say Olivia has been awesome. Very happy and cheerful. She just loves the first few weeks of school. I am concerned with October coming up as that always seems to be the time of her down turn behavior. But we are all enjoying this sunshiny behavior to its fullest issuing as many compliments as possible hoping that will hold off any up coming storms.

She started cheering last week and had her first game on Sunday which she was amazing at!

The game was delayed due to unforeseen circumstances So they were unable to start cheering until after 45 minutes to an hour of our arrival. Olivia was picked to be captain for the first half of the game and did awesome at it! It was surprising considering at practice she didn't follow thru with the whole cheer and would fizzle out. We have been doing a lot of practicing with Olivia's helper and her little sister who is also on the same squad.

This month has been amazing and I do seriously hope it will continue. My next entry will probably be about Olivia's visit with her psychiatrist. I'm anxious to see what comes of that.  : p

Well, we didn't get to see the psychiatrist last month because Olivia's bio dad decided he wanted to see her and that was more important then trying to get her assessed.We now we have to wait until the end of this month. I so love the waiting for doctors appointments--NOT!

Olivia and her little sister Abigail waiting for the bus

She actually just started back to school today. I sent her with a letter of introduction since I have not been able to get in contact with Olivia's new classroom teacher which worries me a bit. I do admit I haven't been very focused on getting in touch there's been to much stuff going on at home.What with Olivia's lack of enthusiasm for cheering which she insists she really wants to do. This has been on my mind as this lack of enthusiasm seems to cover more than just cheering but pretty much everything use to excite and animate her. I can't help but wonder if she suffers from depression because nothing comes easy for her compared to her little sister who is her polar opposite. It would explain why she doesn't even bother trying. Just one more thing to chalk up to her therapist and psychiatrist. Here's hoping I don't have to call back to get in to see the psychiatrist sooner then the end of the month. My suspicion is that she's just gonna try and up Olivia's RX and not bother trying to assess her. So I am not eager to head back there.

It's been a very long time since I've updated. It's kind of intimidating to start back up again with such a lapse of time.

Olivia is now 11 and I'd like to say life has gotten easier here but we actually have seen the worst behavior ever last Fall/Winter. That was the turning point. Her behavior turned dangerous hitting and striking out to her helper and myself and her little sister. We took her to the hospital emergency room twice. There's another post about that coming.

As for this summer she's been very busy this year and much more in control of her behavior although there are some setbacks.

She participated in our town's summer recreation program again, summer school otherwise know around here as EYS (extended year services), and then went away for a week to Girl Scout camp (which she got for FREE by selling 250 boxes of cookies and completing nine (9)other tasks). She's been back a full week this Saturday. The transition back into the home and routine has been a bit hairy not to mention a couple of weeks before camp when she seem to revert back to last fall/winters behavior. We are hoping for her behavior to slowly improve as she gets back into being at home as she decompresses from the pressure of being focused on herself and surroundings at camp.


We are now getting anxious for school to start as our summer plans have come to an end.
Both girls have signed up for cheer leading this fall and girl scouts will be starting up again soon with the girls in different troops this year. Yea! More stress for me!

Emergency room and catching up

Our first visit to the hospital's emergency came after a particularly bad day at home. She had been fluctuating between aggressive physical anger to detachment and despondence.

I called her primary doctor and a crisis support line who both told me to take her the ER when I explained what was going on. There was nothing they could do other than suggest going to the emergency room. I felt helpless. Yes, Olivia was definitely out of control but I felt the hospital was an extremely drastic step and there should of been something her primary Doctor should be able to do.
I called my husband in tears terrified because frankly taking her to the hospital was never an option for me and all I could think was that they'd take her from me and put her in the psych ward. He came home from work and we pulled both girls out of school to go to the hospital while a certain doctor that was recommend by the crisis support line was on duty.

They had us stay in triage instead of the crisis ward. we spoke to the doctor and nurses. As Olivia was NOT in crisis at the moment she was able to let them know that she was angry when she lashed out and she "heard voices around her head like a bug buzzing around" but they were telling her to behave and be good. It's so hard for Olivia to explain her feelings and I was so thrilled in one way to hear this description not so thrilled in another...hearing voices is never good in my opinion especially when she has a family history of schizophrenia.

I really liked this Doctor he actually listened my only issue was of him promising her a "magic" pill. He meant it was magic because it dissolved on your tongue ...Olivia heard "magic" as in it will fix everything no work required on your part. By the way the "magic" pill isn't covered by our insurance. So we have gradually taught her how to swallow a pill like a "big" girl, starting with hiding it in peanut butter. Luckily its only .05 mg and very small. We were so grateful she was OK with all of this and handled it very maturely.

So she is now on Risperidone.
http://www.drugs.com/risperidone.html


We were sent home with a 2 to 3 month wait to take her to see a psychiatrist. That was a huge relief I felt that the psychiatrist would finally be able to find out what Olivia's problem was.

Seasonal affect disorder? Schizophrenia? Bi-polar? Oppositional defiance disorder? Borderline personality disorder?

Next Tuesday marks our 3rd appointment with this psychiatrist who is unwilling to assess Olivia in fear of giving her the wrong diagnosis. Blaming Olivia's behavior more on her limited cognitive abilities than something else.
Nothing in her routine at home has really changed much in the past few years. We are all well aware of her cognitive disabilities since we live with them 24/7 which we are sure is not the cause this destructive behavior.

And since Olivia is doing SO WELL (right now) there's no real need to find out what caused her behaviors last fall until apparently they happen again. The last few years her behavior in the fall/winter has progressively gotten worse from yelling and screaming to the lashing out intentionally and with great vigor and almost enjoyment or the extreme opposite of despondency.

I'm very frustrated with this Doctor and the lack of anything happening...a few more visits then I'll have to spend another 2 to 3 months waiting for another psychiatrist who hopefully will be more proactive for my tastes. After having to endure more visits to the hospital's crisis ward I'm sure.

January 29,2008

Hello, Hello, Hello,

Well its been a shorter time span since my last post. Things are still tough. Olivia's behavior has improved somewhat of course that's due to the honeymoon period with the new staff who comes in to help me out.

I've been researching a lot and came out with another option for Olivia's behavior. PDD Persuasive developmental disorder which is is the autistic spectrum. That does cover a lot of issues that she's had her entire life. Eye contact for one. communication for another. I plan on bringing this up at her doctors appt. next month. Along with ODD- oppositional defiance disorder.

I can't say I'm thrilled about the idea my daughter may also be autistic as well as having MR but knowledge is power. Especially if your child has special needs.

I feel a lot of conflicting emotions lately not just about the possible PDD cause she hasn't been diagnosed yet, but just about her behavior. It's so hard to love someone who is always arguing with you who will blow up at any given minute about something seemingly trivial. Sometimes I wonder if I do love her anymore. wow, that was hard to admit. I mean she's my baby. but she's just so difficult and it just drives us away from her its hard to remember good things about her anymore there just so much negative things slapping us the face its hard to remember even one good thing. And you have to put a wall up to deal with it to not take it personally and i hate feeling so distant from her but if I don't pull away its so much harder to deal with her.

Then there's Abby who's only five who loves her sister with all her heart and doesn't understand why her sister behaves so badly all the time. Yesterday for the first time ever she cried -- no sobbed with her little heart breaking over the situation. It was devastating to her Dad and me. S How do you explain to a five year old????? Now we are discussing therapy for Abby. There are no support groups in our area that are for young siblings of special needs kids.(As far as I know of I need to research that too) Abby just wants to play with her sister and have fun not have to measure what she says and watch and wait for the meltdowns to end if they end. And wait some more. and not be able to understand how differently wired her sister is. I mean we do treat her like she's 10 most of the time because that's how she behaves and we know she's only 5. We try to treat her like she's five but with Olivia around it's hard. Olivia needs extra attention. We try to give some to Abby too. But its hard.

Okay, time to move on I'm going to finish up here by saying the EYS will be finalized soon. They are waiting to see what the budget looks like before I know where she's going for sure.

Now I'm off to call my case manager and see if she knows of any support groups for my youngest.
Until next time.
Bye!

January 16,2009

Happy New Year!!

We are all alive here. Barely. The Christmas holiday was rough. Or the wait to Christmas and the adjustment back to school was rough. Olivia's defiant behavior is cooling down a little. Although that seems to be because of the new worker in the house and easier spelling words to study for for homework.

So Olivia is in the"honeymoon"period with the new worker. Which is great for me and the rest of us because she's doing her best and acting her best . I figure I've got another week of pretty good behavior before she goes back to her 'real' self. Of course next week will bring new spelling words so....

As for the school and the EYS I've still heard nothing. I sent an email last week to everyone in the school and got no response. I received an email from Olivia 's reg ed and special ed teacher this past Monday Olivia is getting sassy and misbehaving in the regular classroom now. I motioned the EYS in my response and was told that she would ask the special education supervisor, who,'d I'd already emailed. I will be trying again on Monday. As well as the superintendent.

So her behavior at school is of course unacceptable. She wrote the mom mandatory letters of apology to both teachers. And I warned her that the next email or note I get from a teacher regarding bad behavior was going to lose her girl scouts for a month. because her behaviour was not the kind of thing a good girl scout would do. That evening was girl scouts we went and the rest of the girls were out of control so all the girls lost their snack that night. My poor Olivia was devastated she loves everything about girl scouts including the snack. It 's a treat for her to have a mini dessert before bed. She held back the tears until the did their "Girl Scout Spin Out" closing.
On the way home after she calmed down I managed to tie-in the behavior of the girls and her behavior at school and how important good behavior is. OH! I was so proud of myself. I think she understood to. At least at that moment.

She had a couple of breakdowns this morning. One over having breakfast upstairs which is very odd we never eat upstairs and I have no idea where this came from. She just started screaming and crying over wanting to eat up stairs. And she was unable to explain it to me being so upset.

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In February we have an appointment with a behavioral specialist who can hopefully help us out with Olivia's defiance. And I know they aren't going to see it because she loves going to doctors and meeting new people. but hopefully they can uncover something before I have to take her to a neurologist and have her head examined. Literally.

Hopefully, I'll have better stories to tell next time.....but i doubt it.