Building Traditions

My Mom's last Christmas, 2007.

December 1st is two short days away. In my family, that is the traditional start of the Christmas season. Our Advent calender will be hung. We will start to decorate, make ornaments, and bake. Most importantly, it will be time to focus on other people.


Children learn by seeing and doing. With my first family, we went to down to Myrtle Beach, every year, a full week before Christmas. We spent that week at Helping Hands, stocking shelves, sorting, wrapping, and delivering gifts, filling holiday baskets. The smallest kids could help people carry their stuff to the car and wish them a Merry Christmas. All the kids would help deliver Christmas to those families having the hardest times- everything from church clothes and shoes, to lovingly wrapped gifts that they had wrapped themselves. Bags and bags of groceries. A live Christmas tree and handmade decorations to decorate it. Always a star for the top. My children still remember these days vividly and their first true awareness that not everyone had it as good as us. We weren't typical and life for them was difficult compared to the children they interacted with every day, but they learned that there were a lot of people that weren't as fortunate as they were. When everything was done at Helping Hands, usually Christmas Eve afternoon, my extended family would go back to my parents. There we would put up our tree and decorate it, there would be large trays of lasagna in the oven, and we would make the 7 o'clock service at my father's church. Our family belonged to many different denominations and each year, we would rotate which church we went to for Christmas morning service.


We don't do Helping Hands anymore. My parents and brothers are all gone. However, Christmas is still Christmas. We want our current family to have traditions and experience Christmas as a season of celebrating the Christ child, building family connections, and service to others. GB could not cope with the chaos of Helping Hands. Helping Hands could not cope with the chaos of Hope. One of our local kids, a ten year old boy who is autistic, has a yearly project of collecting donations and distributing Christmas bags to struggling families. This year I am picking up 50 gifts and on Saturday, the girls and I will spend the afternoon wrapping them. While we are wrapping them, we will talk about why we help people who are struggling have a little brightness in their season. MK will share her memories of Christmas' working at Helping Hands.


Family traditions change. You keep the values that are important.

My Troll Comes A Calling

I was feeling overwhelmed when I wrote my last post. Just to make my day, one of my all time favorite trolls left me a comment. Some of what she said was true. I have a hard time taking her seriously, though. The header on her site says, and this IS a quote, "My home, my blog, my opinions. I will not post any pro-adoption comments. This is not a forum for debate." Nothing like a closed mind to start a discussion.

It is one of those days..

Maybe its the post holiday blues. I did not do Black Friday madness, but my 20 year old nephew did. I waited up for him to get home and it almost three before I got to bed. Maybe it is just tiredness.


Hope is playing up to everybody, except for  gunning for me and GB. Thanksgiving Day Hope scratched GB and left a 4 inch mark. When I tried to talk to Hope, she took a swing at me. The Dad told me to back off and leave her alone. Yesterday, GB left a scratch on Hope. The Dad was all over her, reduced her to tears and removed her from the group. Never mind that Hope was not where she was suppose to be. At bedtime, GB still hadn't recovered. My sister's oldest and youngest are both special needs, though bio kids. The 14 year old and GB have always been oil and water. Visits have gotten harder lately, instead of easier.


I am feeling isolated today and hear that two bedroom apartment calling GB and I by name. Hope and I did well this week and in 24 hours, I am back to wondering why I bother trying.


I will post again when I can shake the negativity I am feeling.

Holiday

We are safely in NC at my sister's. We drove all night in the rain, but it was worth it- Hope slept the whole trip. Wishing everybody a  peaceful holiday.

We Started Thanksgiving Early

This morning the alarm went off, we were awake, and decided not to get up. GB joined us first. The three of us stayed in bed and cuddled and talked. GB worried about the bus, but the Dad told her not to worry, he would drive them. Hope joined us. We spent some more time in bed, cuddling and talking. When we finally felt like it, we got up and got ready for our days. The girls collected their book bags. GB took care of Ellie. We all went out to breakfast, and enjoyed more leisurely conversation. When everybody was ready, we dropped the girls at school.


Tonight, after Therapy Tuesday (UGH), we will leave to visit my sister for Thanksgiving. There is much to be thankful for.

The CSE and Our Bottom Line

Today the girls quarterly Program Review CSE meeting finally took place. We made my before Thanksgiving deadline. Hope was my primary concern this time. My will-not-accept-no-as-an-answer position on Hope was she needed to receive more speech. They gave us more speech.


GB's meeting was a pleasure. They were able to explain to me all of the details for her current reading program and which person is accountable for each piece of it. The reading specialist, who is the new member of the team, said she thought that GB would mainstream into third grade beautifully. I didn't have to say anything as the rest of GB's team told the reading specialist that GB couldn't function in a classroom with that many  people. Everybody  commented on the big difference they have seen in GB the last 4 weeks. I took notes, and nodded at each person. Mr. Teacher told the rest of the committee about the medication change and his opinion that getting GB off Invega and Risperdal had a lot to do with it. Her current IEP did not have her social goals well spelled out. The committee took the time to spell them out and assign responsibility for overseeing them. We will meet again the end of January.


Hope's meeting was not a pleasure. While Ms Very Young Teacher was reporting on the difficulties Hope has been having, the speech teacher interrupted several times to say that Hope's emotional and behavioral difficulties were responsible for Hope's difficulties making herself understood. The speech teacher also asked about mainstreaming as Hope had been mainstreamed last year. Ms. VY Teacher said Hope was starting to be comfortable enough in her class that her problems were easily apparent and she would not recommend mainstreaming until Hope developed more appropriate coping mechanisms. The therapist strongly supported her position. We spoke about the ongoing battle over home work. It was decided that we would set a timer and tell Hope she had 30 minutes to complete her homework. When the timer goes off, homework will go into her book bag. Anything not complete or incorrect will be completed at school the morning during the class' free time. The therapist also suggested using the timer at dinner. Set it for thirty minutes and when the timer goes off, her dinner is over and the plate removed. I agreed to try it. The speech teacher reported that Hope was not progressing as fast as she should because she was a "slow starter" and for the first 10-12 minutes of every session it was as if Hope had never had speech before. Since the sessions are only 30 minutes long, that mean the first 1/3 of every session is nonproductive by the speech teacher's own report. The speech teacher did not see the need to increase Hope's speech sessions because she only tests with a moderate articulation disorder. The rest of the committee used her words (and my analysis) to justify increasing her speech. If I still do not see progress by the next meeting, I am going to request that either Hope be moved to GB's speech therapist, or an outside, independent evaluation be done. Hopefully, speech 3 x a week will be enough to make some progress. I let the CSE know that Hope is being weaned off the Risperdal, with no replacement med in sight, so I expect things to get more difficult.

We are now free to enjoy the holidays. Our next scheduled battle meeting for both girls is the end of January, 2012.

Staying In the Moment

The Dad went out to dinner with friends tonight. He fed the girls and got them in pajamas first. The Dad definitely needed the socializing more than I did. The girls watched a fairy movie on Disney  and there were only a few flare-ups. When the movie was over, I gave then their meds and said bed time. Hope flipped. She was not tired, she was not going to bed with out her father and I couldn't make her. I said "bed" and she started screaming and hitting.I forced a PRN into her and set her down. She screamed, cried, and threatened me for 45 minutes. As the PRN started working, there were pauses between her outbursts. When we had 3 minutes of silence, I quietly told her to go to bed. She did. I got through this evening by staying in the moment.


She is asleep and I am angry. I am so tired of being abused by a six year old- traumatized or not. Tomorrow is a new day. I am taking the morning to myself. Hopefully, that will be enough for a fresh start. I am not Christine. Now I need to try to sleep.

Taste of Normalcy

The girls and I went swimming today. Hope did better while we were in the pool. GB enjoyed herself thoroughly and came home barely able to keep her eyes open. It was a taste of normalcy that we all needed!

Warning

The Good 

Today is Friday. The week is almost over! My stitches are out, I can shower tomorrow, and I should be able to drive the five minutes to the CSE meeting on Monday. It seems like it has been a long time since I could put that much good news in one sentence :)

The Bad

Hope's day was no better yesterday and she started right up this morning. A part of me is happy that she chose this week to completely fall apart, because the CSE on Monday will be so much easier. All of me wishes I knew WHY she was falling apart.

The Ugly

I had a phone conference with GB's teacher last night, preparing for her CSE on Monday. Mr. Teacher told me that GB seems much brighter (ie smarter) the last month. In his opinion, the Risperdal and Invega were blunting her cognitively. My mind shattered and I couldn't get it working again before the 30 minute conference was over. She has been on these medications for over 4 1/2 years. They kept the Bipolar stable, and not having psychotic breaks is extremely important to me. I thought I always balanced the cost and benefits (especially for GB) of the psychotropic drugs. Yet, I never even considered cognitive impairment.

What's Left

The new medication she is on, Loxapine, is an old anti-psychotic. The possible side effects are scary; movement disorders, tics, and Neuroleptic Malignant Syndrome (NMS). I monitor side effects so carefully... and I still missed the cognitive blunting. How can I be sure I am not missing anything this time? Scary.

Things are difficult...

Hope's day at school never got better yesterday. As a result, she is staying at the school while the rest of her class goes food shopping to get what they need to make pumpkin pie. With any of my other kids, this consequence probably would have set off my Mama Bear. I didn't even flinch. After all, I won't take Hope to a food store at the moment. I can't expect her teacher to.


Hope raged about homework last night. Her homework was not complete when The Dad was ready to shop and go to dinner, so only GB got to go with him. A happy GB, an unhappy Hope. I used this time to gently talk to Hope about the last few days. After she blamed the usual list of suspects (with me at the top), she got quiet. After a few minutes, I asked her again why life had been so hard recently. A quiet "I don't know" was her only answer.


Most of her blood work came back yesterday. Her prolactin and a liver enzyme were both elevated. We have started weaning her off the Risperidal. We are not going to try something new until we see how she looks without any medication. The lab did not do the heavy metal test requested. We need to put her (and us) through another blood draw. 


Because of the erratic heart rate, we will need to do a 24 hour EKG. I can not imagine trying to keep the leads in place for 24 hours when Hope is raging regularly. If anybody has some spare miracles to send my way, I would appreciate it.

Hope rages on...

Hope again raged over homework last night. She woke up this morning and immediately continued. I don't understand how she can be that angry before she has opened her eyes. My current theory is that her "reset" button is broken. The Dad was able, after about 20 minutes, to cuddle her and settle her down. The rest of the morning was uneventful and she got on the bus without a problem. The bus gets to the school by 9 AM. By 9:40 I had an email from the teacher that Hope was having a very difficult morning and when Hope told her what was happening, she was unable to understand Hope's explanation. I replied that is why we are going to the CSE on Monday to add individual speech to her list of services, because we also frequently find ourselves unable to figure out what Hope is trying to say. Hope hasn't had a good week.

Hope No Likey Homework

The girls came home from school yesterday, had a snack, and sat down to do homework. In less than thirty minutes, GB's homework was neatly done, correct, and in her book bag. Hope had done one problem and had done it incorrectly. It wasn't rocket science- just writing a number sentence to go with a picture. All she needed to write was 4+1= 5. We went over the picture, and wrote the corresponding number for each group of balls directly on the picture. Since she has been writing number sentences for homework for the last 6 weeks, I reread the directions and told her to fix her number sentence. When she came back with 4+5=1. I knew she had shut her brain down. At this point I told her, like I usually do, that we would work on the homework for 1/2 hour and then put it away. Today was different. The Dad was home. Hope informed me she didn't need my help, her Daddy would help her. The Dad came in the room to help her with her homework. He quickly figured out Hope wasn't interested in actually doing the work, she wanted him to do it for her. He wouldn't. At that point, all was left was the rage. Short Version: She screamed, stomped her feet, slammed doors, and eventually started throwing things at people. It was almost 5 when the Dad had enough and put her to bed kicking and screaming.


This morning, we put her incomplete, damaged homework sheets in her folder. Ms. Very Young Teacher is starting to come around. I received an email from her saying that Hope was busy taping the homework sheets together and would be completing them before starting on today's work.

Both girls' CSE meetings have been rescheduled for Monday. So far, a productive morning :)

Our Monday

• Hope finally had her blood work done. She still flipped out, but this morning there were enough people to hold her down.
• GB, with MK's help, used her newest cookbook to make monkey cupcakes for her class. I love how they came out.
• Took the two hour round trip with The Dad and the girls this morning. The psychiatrist spent a half hour talking to GB and 10 minutes taking to Hope. She is pleased with how GB is doing on the new medication. She wants an EKG done on Hope.
• The trip zapped me. I came home after dropping the girls at school and my oxygen saturation levels hovered around 90. I hope I get to stay in bed for the day, but the doctor might want to see me (I am not calling her).
• Back fighting with the Director of Special Education. I want both girls' CSE meetings before Thanksgiving.
• Normal (at least our normal) is within sight. Stitches out Friday.

Trying for Quiet

It took her almost a week, but Hope has figured out that I can not make her do anything as long as I have to stay in bed. She is an unhappy little girl because since she has made it clear she was not listening to me I am not letting her in the room with me unless The Dad is also here. She tried to convince The Dad she had listened to me, but his logic buried her.

Everyone could use a break around her. Everybody (but me) is playing the Wii now and I am hoping they will burn off some excess energy before bed. I get my stitches out Friday, so  we will all be able to go swimming next weekend. My grandson ran full speed into the window ledge. He is so fast it is scary. I am a little bit happy that I am incapacitated, since nobody currently expects me to keep up with him. These days he usually looks like he is a prize fighter. Hope bumped her chin against the bus window Thursday and had a small, nasty looking wound. She has been picking hat it since and is now bigger and uglier. She wants me to make it better. We are not doing well on cause and effect at the moment.

My goal is to get through the rest of the weekend quietly. Hope still hasn't has her bloodwork, Maybe Monday morning...

UUUGH!

I received a call from the girls school this morning. Hope had a high AND irregular pulse. Of course, I am still stuck in bed. I called our doctor, got a hold of the Dad, and off he went to pick up Hope. Hope saw the doctor and after she spoke to the school nurse, she ordered blood work. The Dad took Hope to the lab, where she proceeded to flip out. No matter how he tried, he couldn't keep her still enough that the tech could take the blood sample needed. They are home now. The Dad is pissed angry that he couldn't get the blood test done, Hope is busy telling me how it is the Dad's fault, MKs fault, my fault- anybody's fault but hers. I am left here in bed, worried about Hope's irregular heartbeat. UUGH!

Medication Update

GB is finally completely off Invega. In two weeks we will repeat her blood work, and, hopefully, her Prolactin level will be down. Today is the first day on the full dose of loxapine. I asked her teacher for feedback on the last couple of weeks of school. This is what I received:

Dear GB's Mom,

 We have noticed that GB is much more motivated and pleasant. She is engaged in her work and participates gladly in all activities. It has been a very pleasant and positive change.

GB  practices Tai Chi

  Sincerely,

    Mr.Teacher

Today I am grateful for medications that work and the professionals that help me find them.

Professional Crap Not Needed

Still recuperating from surgery. It is difficult to be down for the count and try to manage things from flat on my butt. One week and three days and I will be mobile again. Lots going on here, but I just couldn't muster up the energy to post. A friend had an experience yesterday, my adrenaline started  flowing, and this was the result.

All of our children deserve the best medical care we can find. When the child has special needs, it is even more critical. Those of us with a high maintenance special needs  child know it is necessary for our family's survival. And there's the rub... our families do not look or interact like typical families. There are an infinitesimal number of highly qualified professionals who also understand that since our families aren't created out of typical children, they will never look typical. We are ordinary people in  extraordinary  situations. Some of us are overweight, some of us are not socially adept, some of us are performing most of the time, some are always moving, others of us are  a perfectionist or overly critical. We are imperfect people, like everyone else.

It is really discouraging to have an outstanding team of professionals lined up to treat our high maintenance special needs child, only to have one of them veer off into you and what you need. I had one tell me it was unfair to GB to keep Hope. In my world, neither helpful nor a solution. If GB's shrink spent her appointment discussing how much weight I needed to lose, that would also be neither helpful nor a solution. If my kid had cancer, everybody would be shocked at an oncologist who spent forty-five minutes telling me how much weight I need to lose or how much stress my child's cancer is putting my other children under and how I need to make different arrangements.

Our children have specials needs through no fault of theirs or ours. We are people trying to do the best we can for our kids. We do not need professional crap.

Still Here...Sort Of

This is just an update because I don't have anything else in me at the moment.

* GB has been on the ant-psychotic loxapine for 5 days now. It has taken the edge off the mania, but I am hoping for so much more.

* Hope's birthday has come and gone, the tantrums still linger rage on.

* Texas parents sent Hope a big box of gifts. Didn't open it, haven't answered their last email, Hope hasn't brought them up.

* GB's respite provider died last night. They never did control the pain.

* I had back to back CSE meetings set up for tomorrow, for a total of three hours. I had to cancel them.

* I had to cancel them because the minor surgery I was having done in an outpatient clinic morphed into real surgery at the hospital tomorrow because of my ongoing medical problems.

* They knocked down my parents house today. It now looks pretty much as it did before they started building 23 years ago... an empty lot. The koi pond is gone.

My mother always said if you have nothing positive to say, be quiet. That is not what she did, only what she said.