Saturday, December 31, 2011

Hope's First Playdate

Hope went on her first play date today. It wasn't that she has made enough progress to try it, but rather that GB had made a friend during Challengers softball. Her friend has a younger brother who is eight and developmentally delayed and their house is set up so it is easy to provide constant supervision. GB and her friend, Jordan, did crafts while Hope and Tyler played with the doll house, swung on the indoor swing, and watched Scoobie Doo. There were the expected rough spots, but with two adults there to intervene, nothing got out of hand. Hope had a great time and didn't want to leave. Hope's first social success! I am hoping to give her another opportunity soon.

Friday, December 30, 2011

Other Blog: An Adoptive Mom

I have posted a bit on the other blog. If you would like to read it and you don't have permission. you can email me at lsweeney@hvc.rr.com. (Miz Kizzle, this invite was provided partly because of you.)

Thursday, December 29, 2011

Change Isn't Necessarily Good

Some people welcome change. Some people fight change. Change itself is neither good nor bad. It is unavoidable. Nothing stays the same.

This is more philosophical than I am prepared to deal with at this point in time. I find myself with no choice. Hope's behavior is changing. She has always had a tendency to touch everything. She has always been destructive. Now it is constant. She takes everything that catches her eye. She breaks everything she touches. If she is out of eyesight for a moment, she is found in the middle of a mess.

My dilemma? I am not sure if she has made progress and is now working through her terrible twos or if everything has her so overloaded that she has regressed to that age. I guess it is not necessary to know whether it is progress or regression to get through it. I will say that it very hard to baby proof your house against a six year old. It is also very hard to convince people in the outside world that this very normal looking six year old needs to be supervised as if she was a toddler.

Since I am not sure, I am going to choose to see this as a sign of progress.  

Wednesday, December 28, 2011

It is Wednesday

My sister and her family left this morning. Organizing and cleaning are the order of the day. I loved having my sister here, even when we agree to disagree. My 19 year old autistic nephew did well. He only needed to be separated from everyone a couple of times. MK did well. My 14 year old nephew with ADHD and a mood disorder really struggled. He clashes with GB always, but this visit he had difficulty self-regulating most of the visit. Hope continued to struggle, no surprise, but GB spent the last four days at the edge of tears. Lots of little things, all out of her control. She just can't go with the flow. It might not have mattered what we did this year... I think this holiday was destined to be a struggle.


The guys' pajamas had pockets. I think we might all get guy pajamas next year.

Sunday, December 25, 2011

Merry Christmas


May the joy and peace of Christmas visit us all today... even if only briefly. Merry Christmas, Happy Hanukkah, Season's Greetings! Love is universal.

Saturday, December 24, 2011

I Borrowed Ralphie

Hope has been doing her best to get us to cancel Christmas. In an uncannily timed post, Christine at Welcome to My Brain, wrote about her family rule that nothing a child can do can cancel Christmas. Hope hasn't healed enough yet that she could hear this. However, The Dad and I can benefit from the reminder. The passing thought that Hope might be the first child to drive us to canceling Christmas is a waste of emotion, time, and energy. Christmas will come no matter what big behaviors Hope can come up with, so the Dad and I need to focus on the moments that will keep us going. Sometimes the obvious needs to be said.

Thursday, December 22, 2011

Strength

Hope is having a tough time. She is angry and lashing out at everybody. My best guess is the holidays are exacerbating our normal, difficult life with RAD. There are minutes when I want skip Christmas completely. It is not reasonable and I never take any action to abolish Christmas in our family. Sometimes, though, it is so tempting.


Hope is just starting to talk about the trauma she experienced in her previous adoptive family. That is a sign she is experiencing some feeling of security with us. I don't think she wants to feel any security with us. I think she would rather stay in LalaLand and pretend life in Texas was good and she didn't have behavior problems until we kidnapped her. Hope knows this isn't true, but is much more comfortable in the alternate universe where it is true. I can't imagine living through the trauma she lived through and still having the will to  fight the world. I keep reminding myself that Hope's strong will is ultimately one of her greatest strengths. It just makes the now so hard.

Wednesday, December 21, 2011

Fun With Friends




We spent two nights taking a mini vacation with friends of ours, from mommyneedstherapy. We went to an all included dude ranch, which happened to be half price this week. There was an indoor water park, good food and great company. The Dads took GB and Noah horseback riding. They all enjoyed snow tubing and ice cream at every meal. My friend and I got mommy time (and a drink or two). 

Hope was too young to go horseback riding. We spent the time drinking Shirley Temples and at a Christmas Carol sing-a-long. It may be the best time Hope and ever spent together. Hope did OK, except for Sunday night. She poked from 8 pm until 2 am in the morning. Overall, it worked out really well and we have already booked a return trip just before Christmas 2012.

Hope
GB

 They are back in schools for two days. I pray Hope can hold it together.


Monday, December 19, 2011

I'm at One Tiny Starfish Today

I did a guest post yesterday over at Nikki's http://www.onetinystarfish.blogspot.com/.    Nikki does some great humanitarian work with special needs orphans. Check her out.

Sunday, December 18, 2011

Seeing Santa


Hope spent the last three days within touching distance. However, I made an exception for our visit to Santa. I let Hope visit Santa by herself. It was interesting watching her trying to convince Santa how good she has been. 




GB, on the other hand just wanted to get it the visit over. 


Everybody enjoyed the beautiful lights in Santa's park.



Friday, December 16, 2011

TGIF

It's Friday and Hope's horrendous week ended with a bang. Hope had to stay in her classroom and work while her class went ice skating because of her poor school behavior this week. One of the aides stayed with her. When the class returned, Hope's work was nowhere to be found. Ms. V.Y. Teacher looked for it in her desk. It wasn't there, but the desk was filled with items Hope had stolen from teachers, aides, classmates and GB over a period of time. The school is now begging requesting our input on how to deal with Hope. They are no longer looking at us as if we are crazy. I hope this is just Christmas RADness and Hope will settle some in the new year.

Thursday, December 15, 2011

Birth Mother

GB's Birth Mother is homeless. Again. GB is struggling with a lot of feeling she doesn't understand and can't find words for. Again.


She was suppose to go to her grandparents to bake Christmas cookies and enjoy a spaghetti dinner on Monday. Her grandmother called shortly before the girls came home to tell me BM had been evicted for non-payment of rent. She was at her father's house, along with GB's half-sibling and her brother. I could hear the ruckus in the background. There was no way GB was going into the middle of that.


As I waited for the bus to come, I searched for words. Again. There were none. Nothing was going to change how GB felt about this long anticipated visit being cancelled.


As the girls got off the bus, GB was bouncing with excitement. "Where's Grandma?" I told her Grandma wouldn't be coming. Instantly her eyes filled with tears. "Why not?" I mentally ran through possibilities. BM was spending her rent money for drugs. BM was caught stealing thousands of dollars worth of jewelry from a family member. Social Services denied her any assistance for a one year period because of fraud.


When I spoke, all that came out was BM was homeless and a lot of people were upset. GB's face showed nothing. "I hate BM. I don't know why everybody gets upset. BM is always homeless."


I hate to see my child in pain. There is nothing I can do but be there and listen if she wants to talk.

Wednesday, December 14, 2011

Yes! I am Psychic!

 I am psychic and yesterday proved it.

 Hope had an awful time getting to school yesterday. I knew she could not hold it together in school, but The Dad overruled me. After I finally got her on the bus, I sent this email to her teacher:


Dear Ms. V.Y. Teacher


 Hope had a very difficult morning. She was extremely physical, kicking and throwing things. I thought of keeping her home, on her mat, but her father chose to send her.


GB's Mom


At 9:40 AM, I received the following reply:


Dear GB's Mom,


Hope walked in crying this morning.  She said that she had a hard morning due to GB.  She said that GB hit her and when I asked where she pointed to her face.  Then I asked if she hit her back and she told me no.  She mentioned GB saying that her backpack was "right there" and she didn't see it.  I am not sure if her rough morning was due to issues with GB, I just wanted to inform you of what she reported to us.  She says she was crying because her dad didn't give her a hug and kiss goodbye before she got on the bus.  She is fine now.

Ms. V.Y. Teacher


Upon reading this email and further reflection, I decided it was necessary to get the Director of Special Education involved. I sent her an email, too.


Dear Dir

Hope is putting a lot of effort into getting GB into trouble. Last week, she bit herself and told Ms. V.Y. Teacher that GB bit her.  This morning Hope was kicking and throwing things and told Ms V.Y. Teacher that GB hit her in the face. I realize you have no control over what Hope says, but I do request that she get as little attention as possible as a response. Also, when Hope bit herself and blamed it on GB, she was walking from the bus to the classroom. I feel it is necessary at this point for Hope to be closely supervised at all times, especially during the transitions to and from the bus.

GB's Mom




When I went to get the girls off the bus yesterday afternoon, only GB was on it. Hope had spit at and hit the bus aide and thrown her book bag at the bus driver. Reasonably, she had been removed from the bus and needed to be picked up at school. The Dad was not happy. Hope's day didn't get any better.









Tuesday, December 13, 2011

On the Warpath

Hope is on the warpath again. Kicking, biting, and throwing things, multiple times a day. And she put GB in the middle again. After being physically aggressive all morning, she turned on the tears and told her teacher that GB had smacked her in the face.


I know regression is common during the holidays, but this is more than I am currently willing to deal with.  I am going back to the days when Hope first came. She will stay within my reach at all times. Until she is able to get her physical aggression under control again, her and I will be staying home. It is not safe to have her out in public.

Monday, December 12, 2011

Petite Fours



Hope finished her dinner extraordinarily quickly last night. The Dad took her upstairs to bath her and once she was in the tub, threw the dress she had been wearing downstairs to the laundry room. He never checked Hope's pockets. Ellie (GB's dog) went gaga and tore the dress apart. Hope had put her steak from dinner in the dress pocket so she could have dessert. 
Up until that point, it had been a reasonably  quiet day. The girls had wanted to make Petite Fours, like the ones served at High Tea. I cut a pound cake into 21 little cakes. I frosted 5 sides of each little cake. The girls gathered all the sprinkles, colored sugars and candies they could find. They decorated each little cake and were very proud of the results.
I would have included a picture of them admiring their work, but by the time I  got around to it, Ellie had eaten the meat out of Hope's pocket and Hope was already in bed. Maybe next time.


Saturday, December 10, 2011

The Highlights of GB's Week




Life has been tough for GB. When Hope bounces, she goes after GB. In spite of that, GB's week had some highlights.


  • All of her Jordan's wish packages got completed. Jordan thanked her for her help on TV.
  • She made ornaments for all her teachers and specialists, who loved them.
  • When she crumbled on a round-off, all the NT kids in her class surrounded her to make sure she was all right.
  • She did her first unspotted back bend and realized it was easy. The NT kids recognized what an achievement it was for her and celebrated with her.
  • When a NT girl she has been friends with since she was three made fun of her watching Barney, GB was able to shrug and tell her that is what she enjoys.
  • GB was awarded an Effort Certificate for the first marking period.
  • Throughout Hope's tough week, GB continually tried to make things easier for Hope... not her job, but a sign of growing attachment and a big heart.

Wednesday, December 7, 2011

Need a RAD Sheild






Listening to music is one of the ways GB self-regulates. I recently bought her new headphones and she loves them. She used them tonight, with some success.


I had a tough morning physically. GB fed both girls cereal, took care of Ellie, made sure their backpacks were together and walked out to the bus on time. A success all around. Right up to the 9:40 email from Hope's teacher, Ms. VY Teacher. In the email, Ms VY Teacher told me Hope got off the bus, went straight to her classroom and told her that GB had bit her this morning. Hope had a bite mark on her arm.


To get to my to my point, after exchanging six emails, the real story was that Hope had bit herself and told her teacher that GB had done it to get GB in trouble. She said she was tired of GB always being good.


How do you protect  an autistic, FASD, 8 year old from her  RAD sibling?




Monday, December 5, 2011

Trolls

Not all trolls post comments. I have several trolls that send nastygrams, disguised as emails. I cut back on my posting while trying to figure out what to do with my private trolls. None of them are interested in dialogue. All of them make judgements, projecting me into their life experiences. Some of them seem to be good people who are in a hard place. Some of them are bitter and angry at everybody. None of them know me. Most of them don't even want to know me.


It took me over a week, but I have decided how I want to deal with them. I have a spam filter of my email, and I added my trolls sending addresses to my list of spam. Since I never go rooting through my spam folder, in thirty days, when it automatically empties, my trolls will be gone. Best of all, I will never even know they have been here.


Sunday, December 4, 2011

A Giving Part of Christmas


Today we worked on Jordan's wishes. Jordan is an autistic boy who played baseball with GB. He has spent a lot of time in hospitals. Several years ago, he decided to make gift bags and distribute them at local hospitals. The first year he gathered enough donations to give out 80 gift bags. Each year he received more donations and needed help. This year Jordan has enough for 620 bags!


The girls and I picked up enough things to make 50 bags. We got to do the bags for the babies. Each girl took a gift bag and put a baby hat, an ornament, a bookmark, and a deck of cards (for the babies' parents) in it. They used shiny, pink twist ties to close each bag and taped a "Jordan's Wish" tag on each of them. Mali made three bags with MK's help. He was very good at putting in things in the bag- he wasn't as good at leaving them there! Everybody had a good time, although GB struggled a bit with control issues. This tradition is a keeper!


We sang Christmas carols and the girls kept track of how many bags they had done. All 50 bags are done and it is time for homemade hot chocolate.



Thursday, December 1, 2011

A New Twist





The Dad's mother is 86 years year old, has Alzheimer's, and lives in an assisted living facility about an hour from here. When The Dad went into the attic last night to get our advent calender, he came down with the advent calender this picture. It was handmade, out of felt and sequins, over twenty years ago by my mother-in-law. We already had one and no one was interested in switching.  I had forgotten about it. When he found it, The Dad wanted to use it. It had little and sequin ornaments that fit into the pockets. 

Today I  cut 1" x 3" rectangles out of card stock. I put GB, Hope's, and Mali's names  across the top, easily visible. I wrote something under the name on each rectangle. Some were suggestions for seasonal activities such as wrap a present, some were for treats such as have an extra Christmas cookie, and some were suggestions for encouraged behavior such  help someone with a smile today.




Today was December 1st. The card had GB's name on it. She choose an ornament, pulled out the card, and read it. It said "Hug someone you love today". She smiled and gave Hope a really nice hug. Then she put the ornament in the pocket with the number 1.


A new twist on our old traditions. GB isn't feeling displaced (previously, she was doing the old advent calender every day) and Hope and Mali are part of our new tradition.

Tuesday, November 29, 2011

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.

Sunday, November 27, 2011

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.

Saturday, November 26, 2011

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.

Wednesday, November 23, 2011

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.

Tuesday, November 22, 2011

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.

Monday, November 21, 2011

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.

Sunday, November 20, 2011

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.

Saturday, November 19, 2011

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!

Friday, November 18, 2011

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.

Thursday, November 17, 2011

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.

Wednesday, November 16, 2011

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.

Tuesday, November 15, 2011

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 :)

Monday, November 14, 2011

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.



Saturday, November 12, 2011

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...

Thursday, November 10, 2011

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!

Wednesday, November 9, 2011

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.

Tuesday, November 8, 2011

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.

Wednesday, November 2, 2011

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. 

Friday, October 28, 2011

Walking ON Eggshells



GB is still dysregulated and manic. After trading a dozen emails back and forth, the psychiatrist and I agreed on a plan. I am not doing the happy dance. GB has been on every atypical antipsychotic currently available. The only two that stabilized her were risperdal and invega (A metabolite of risperdal). Unfortunately, Prolactin levels in the 40's are not acceptable in an 8 year old girl. So we are left to try traditional anti psychotics. Tomorrow morning, GB starts on loxapine. It has black box warnings and we didn't want to start her when we would have to rely on the school to monitor her. 

Parenting special needs children is often like this- there is no good solution. You are stuck between a rock and a hard place and have to chose between two lousy options- in this case, no treatment or risky nasty side effects. I made my choice and I am praying that God will wrap His arms around her.

Thursday, October 27, 2011

14 Day Challenge Update



I have been taking the 14 Day Challenge over at Pearls of Price. The object is to confine yourself to positive or neutral words, and when you can't manage that, be silent.  And do this for 14 consecutive days. I thought it would be difficult. I am finding it impossible. I have yet to start Day 4!


Even though I can't see myself actually making 14 consecutive days, I have benefited from trying to do so. The girls have also benefited. Being in the challenge has made me monitor closely my attitude and words. After all, attitude is the birthing ground for our words anyway. Hope has responded well to my silence. There have been many situation where I can't think of anything positive or neutral to say. For example, Hope was sitting on her mat screaming and sobbing that she was in control. The only reaction I thought of was to laugh. Obviously not positive or even neutral. So I said ABSOLUTELY nothing- not even a mutter. After almost an hour , Hope finally got quiet. I waited five minutes, then went to her and told her that this is what control looked like, gave her a hug, and let her up. I don't know if she got the message on control, but I do know my blood pressure didn't shoot up and I didn't contribute to her meltdown.

On the other hand, Hope complains and whines constantly. When I try silence, she just ups the ante and and tells me I don't love her or like her. Eventually, what I think of as her "poor Hope game" beats my silence and I tell her to take "poor Hope" into another room. There is another blown day. It supports my attitude is the birthing ground of words theory. Obviously, I need to stop thinking of it as the "poor Hope game"when she starts whining and complaining. I am working on it.

I don't know that I will ever make 14 days straight, but just the effort is improving the quality of life around here. I will update again.



Wednesday, October 26, 2011

October 26 1937- February 16 2008

Mom's 70th Birthday, her last

Today, my Mom would have been 74. Today, my brother would have been 48.

A lot of who I am came from my mother. I still miss her. If you still have your Mom, please give her a hug from me.

GB says Grandma at the Beach is walking the beaches in heaven, waiting for us.

Tuesday, October 25, 2011

Gratitude

Despite some current difficulties, I have many things to be grateful for.

* The Dad is back from Michigan. His report: J looks good and outside of school, X is doing well.

* We are having car problems, but we have the fiscal resources to solve them. Annoying yes, but it could be worse.

* GB is manic at the moment, but her psychiatrist answered my email in less than thirty minutes.

* Things aren't going well with the "outlaws" (Booboo's family), but MK is getting more reasonable and showing maturity in dealing with the situation.

* My grandson has started bringing me books, saying "read" and climbing into my lap.

* It is cold outside, but warm inside.

* When I look at the hard stuff, I can say "This, too, will pass" and believe it.

* I am never alone.


Monday, October 24, 2011

Bipolar is Back

Bipolar is back. Not that it was ever really gone, but the Invega controlled the bipolar so well, the bipolar rarely made the radar screen. GB has only one volume at the moment- loudest. The pressured speech makes it hard to understand what she is trying to say. She is only completing one thought in four. The rest gets lost in the whirlwind of mania. She has no attention span. My biggest dread is that as the mania cycles higher and higher, she is more likely to experience psychotic breaks. Please pray for her... she doesn't understand what is happening and is scared.

Saturday, October 22, 2011

Hope, Party, and No Social Skills

Hope's birthday party was today. GB has been fragile since we cut pack the Invega. Only two of the nine other kids in Hope's class came. GB's NT friends filled in the gap, but when the party was over, Hope wanted to know why her other classmates weren't there. I told her I didn't know, because I couldn't tell her she has no friends because she has no social skills. Not only would that have been negative, but it probably would have ignited a meltdown. I need to get Hope's IEP out and write some smart goals for social skills before the next CSE meeting. It was a strange party... the birthday girl didn't interact with most of her guests.

Friday, October 21, 2011

Not From Me





This was one of the few relaxed moments GB has had in the last couple of days. Pressured speech, lots of tears. I am afraid the 1/2 dose of Invega is not holding her. The place she is in doesn't allow me to be silent when I can't be nice. I am still making Day 2, but I think my niceness is coming from God. I know it is not in me.



Thursday, October 20, 2011

36 Hours, Redoing Day One

The Dad has been gone 36 hours. I successfully navigated Day 1 all over again. The girls had a half day of school. We went out to lunch, to the party store, and made goody bags. Hope's 6th birthday party is Saturday. The Dad booked The Little Gym  Saturday at 2:30, then bought a plane ticket to Michigan. I haven't spoken to him without the girls around, so I am not sure how Michigan is going.

After doing goody bags, the girls tried to watch a movie, but GB ended up in tears multiple times. I turned it off and made each of them unhappy. They recouped in time for the three of us to make pizza together for dinner. They called The Dad and now they are in bed- GB asleep, Hope talking to herself about how mean I am. I am not saying a word!



Wednesday, October 19, 2011

Back to Day One

The Dad left this morning. He will be in Michigan for 6 days. Naturally, Hope melted down this morning. Only I didn't see it coming. She was great until 5 minutes before the bus came. We gathered up school stuff and I told both girls to get their jackets. It was raining. Hope told me she didn't need to get her jacket. Again I asked her to get her jacket, in  a consciously neutral voice. She started screaming and crying that I hated her and she didn't need a jacket. She hit GB and I lost my attitude. I was very negative when I told her to put her coat on NOW. She walked out into the rain without a coat. The bus came and both girls are gone- GB dry, Hope wet. The consequences of the morning? Hope has no TV today and I am back at Day One tomorrow. Sigh.

Tuesday, October 18, 2011

Medication: A Mixed Bag

We took the girls to see the psychiatrist today. Both girls had high prolactin levels, but GB's was through the roof again. We had to cut her Invega dose in half and now we pray that when it is tested again in three weeks, it will have gone down. If it doesn't, she has to come off it. I am not sure that a 1/2 dose will maintain her stability. I dread having to take her off it completely.

Hope now carries a diagnosis of PTSD, along with RAD. The therapist at school  is focusing on her trauma during their sessions. The outside therapist is not. The shrink  told me today that I had to make sure that the outside therapist refocuses her therapy with  Hope and keeps in contact with the school therapist. She said ideally we would just use the school therapist, but since this is the third school therapist in the year we have had Hope, we would need to keep the outside therapist for consistency.

So far today, I am doing well with my attitude Challenge. This afternoon we have to take the hour ride back to Little City because it is Therapy Tuesday. Hope struggles with therapy. I am going to be very mindful of my attitude.

Monday, October 17, 2011

Saying Good-Bye

We have been waiting for Mary, GB's daycare/respite provider to come home from the hospital so we could take GB to say good bye. It doesn't look like she is going to get to come home. Ulster Hospice doesn't take their insurance. Yesterday, GB and the Dad dropped off a card GB had worked very hard on, telling Mary how much she enjoyed their time together and how much she was going to miss her. Mary wasn't feeling well enough for a visit, so they just left the card.

This evening, I took GB up to the hospital. Her card to Mary was taped on the wall and the envelope, which said "I love you Mary" was taped right in front of Mary's bed. GB saw the envelope and buried into me, and cried softly. We didn't stay long. The only thing GB would say was "I am so sad". Life is hard sometimes.

Day 2 Report

Day 2 was not any easier than Day 1. I was successful,but only because I didn't say very much. I did manage to put Hope on the mat, keeping myself matter of fact and neutral. I am thankful today is a school day- it is easier to keep the challenge when dealing with people that aren't trying to push buttons. I sent Special Ed and email today instead of calling them :)

Sunday, October 16, 2011

Day 1 Report

Yesterday was day one of attitude challenge. I had Hope all day, and while I was much quieter than normal, I succeeded without much trouble. GB was home and I had the girls together for three hours. A little harder, but still a success.

The more difficult part of day one was in the evening. The Dad and I went out to dinner with three friends. My humor tends to have a sarcastic bite to it. My dinner company and I  enjoyed ourselves. The Dad continually monitored my conversation and repeatedly asked if what I just said was positive or neutral. It was mostly sarcasm, which is not positive, but can be enjoyable. I might add, it wasn't at his expense. Since I won't be going out to dinner again in the next thirteen days, the situation will not arise again.

Saturday, October 15, 2011

Take the Challenge! ( I am)

Today I found a challenge I couldn't resist, over at Pearls of Price. It is the 14 Day Plan to Improve Thought Patterns. Starting today, I am committing to speak to everybody (the school district and Hope included) using positive or neutral language for fourteen consecutive day. If I can't figure out how to use positive or neutral language, I have to say nothing. For consecutive fourteen days, including  six days the Dad will be in Michigan.

After my realization that I was me, Thursday night, without anything Hope did changing my reaction, I wanted more of that. I will be using my blog to track my progress and hold myself accountable. I would appreciate prayers and good thoughts... I do not think it is going to be easy. Any body want to join us?

Friday, October 14, 2011

May the Wind Always Blow on Your Back

There are a lot of adoptive parents that are currently in rough waters. A lot of families trying to heal traumatized children the best they can. Sometimes their intentions are misconstrued, their motivation judged. Truth is always filtered through one's reality. When your reality is so different from another person's, there may not be a way to bridge that gap. Sometimes, the only way to move on is to acknowledge that at this time, in this place, there can be no meeting of minds. Good bye, sweetie. Best wishes and may life offer you all that is good.

Worth Sharing

Hope drove me crazy yesterday. She sneaked outside with out permission, fed the dog bubble solution, lost her homework, hit the dog, and stood in the hallway screaming because she had nothing to do. There was more, but that is not important. What I wanted to share was that as I kissed Hope goodnight, I realized that I didn't have a headache, my blood pressure wasn't changing wildly, and I didn't have to force myself to go through my Mommy motions. Hope didn't have a good day and I was okay. That is worth sharing.

Thursday, October 13, 2011

Tea






Yesterday, I did something I rarely do. I drove a half mile and had tea with two ladies I am acquainted with but do not know very well. Of course, they also have special needs kids. Their kids are in the same school district as mine. One of their kids is in GB's class. It was interesting to hear their perspective on the various people we interact with. We exchanged lawyers names and neuropsych's numbers (not quite recipes) and all in all, it was an enjoyable ninety minutes. Maybe not the normal, mainstream dropping by for coffee, but probably as close as I am going to get.

Wednesday, October 12, 2011

To Those Who Want to Adopt

*** Disclaimer- most of this post is from my experience. The parts that are factual have still been filtered through my point of view***

Adoption is a great way to build a family. I would do it again in a heartbeat. However, it is not the same as adding to a family by the usual making a baby route. There are similarities, but the differences can't be ignored. There are many ways to adopt.

When thinking of  adoption, many people think of adopting healthy newborns. People trying to adopt healthy newborn usually can't conceive and/or carry a baby themselves. It takes a lot of work, time and money to adopt a healthy new born. Some people operate under the illusion that they have control and know what they are getting. It is an illusion. Sometimes, adoption results in the child that was expected. Sometimes it doesn't. I adopted two healthy infants. Over twenty years later, I can tell you that Bipolar and FASD is part of who they are. We ended up in Holland, not Italy.  Control is always something of an illusion, even when giving birth. Once that egg is fertilized by Mr. Sperm, there are things out of your control. Of course, you will eat right, get prenatal care, give up smoking, refrain from alcohol, and avoid sick kids. But even with all that, you may not end up with a neurotypical child. Life does not come with guarantees. The odds are probably more in your favor, but I know a lots of people who conceived and expected healthy babies and ended up with kids with special needs- from mild to profound.

People who adopt special needs newborns usually have a good idea of what they are getting into. Few know it all. When adopting a child who is not a new born, you adopt all the experiences they have had and all the experiences they missed. It is a package deal. When I was 23 and started out on this journey, I was convinced love was all that mattered. It could overcome anything. Adoption can't work without love, but there is so much more needed.

Genetics is important. It can not be changed. Your child's prenatal experiences are theirs' forever. No matter how many times GB tells me she wants to grow in my belly for nine months, I can't make it happen. The limits of their intelligence is already set. No matter how many books I read to MK over her childhood, she does not have the capabilities to do college level work. Your child's genetics determine their skin tone, hair texture, and facial features. By themselves, these things mean nothing. But in this place, at this time, it determines, at least initially, how society reacts to them. Since they are now part of your family, you will need to deal with racism on a regular basis, be it institutional, unconscious, or blatant racism. When I chose to be an interracial family, I was young and naive. My parents were very careful not to pass their biases onto my siblings and I. We grew up with little exposure to anything other than white, upper middle class kids. Yet current events, the civil rights movements, the Kennedys, and Watergate were all dinner table topics. Equal Rights, in the abstract, were considered God given. We had close relatives who were bigots, but whenever their bigotry was expressed, they were called out on it and we were told they were wrong and ignorant. Still, when my first baby was biracial, the shock was apparent in both my parents facial expression and tone of voice. J was their first grandchild and he won my mother over quickly. My father took about 13 years longer, but it happened. My husband's parents kept waiting for my black children and I to disappear. They missed out on having a real relationship with any of them.

It is difficult for white parents to recognize when racism is at work and when it is (mostly) other factors. When MK came home from a friends birthday party in third grade, upset because the friends mother had said she was the wrong color and they couldn't be friends anymore, I was so taken by surprise, it was difficult to come up with a useful response. Once I digested this incidence, I decided that racism needed to be an open, continuous conversation between our family and schools, sports teams, and neighbors. It still is. One of the reason's we changed GB's school was because it was the same school my kids went and racism was still a much larger player at that school than at any of the other district schools. I also realized how unfair it was to my kids to always be the minority. Joel did not have another child of color in his grade (85+ kids) until he went to junior high. Joel and I joined a black church, with a strong youth program,  were he fit in and I was the only white person. Several months later, the whole family switched. Some of the people I met at this time are still close friends.

Even if you chose not to go the interracial route, adopted children are estimated to have Bipolar Disorder as an adult at ten times the rate of non-adopted adults. Bipolar Disorder has a strong genetic component. If you adopt internationally, especially from some parts of Russia, fifty to seventy percent of the children have FASD. Any adoption from an orphanage raises  the risk of an attachment disorder. The worse the orphanage, the higher the risk. But truthfully, in any adoption, you can't assume you have all the information you need or even that the information you have is accurate. The paperwork on my J said he was born to two white parents. Neither parent had a history of Bipolar Disorder. As far as I was ever able to figure out, if the information wasn't known, it was made up. I know it happens that way in some foreign countries. A close friend adopted a three year old from South America. He had the usual attachment problems. When he seemed to hit puberty at the very early age of ten, bone scans  revealed that he was almost 13. My friend lost family connections, her church, and her social life while she and her husband fought to get their son what he needed.

It is not unusual to lose the support of family and friends when a child you adopted unexpectedly has special needs. Most of the time, inexperienced people, whether they say it out loud or not, are thinking that if THEY had that kid, the kid would be fine in no time. What YOU are doing is wrong and the cause of the problems. If you depend on your family's, church's or friend's approval, you should reconsider adopting. If you are uncomfortable being out of the mainstream, you should reconsider adopting.

Most of all, if you are uncomfortable with change, take time consider whether you really want to adopt. Every child you adopt changes you in ways that are unpredictable. Your days are full of surprises. They bring out talents you never knew you had, hurts that you had buried deeply within yourself, strengths you were unaware of, and sort out the chaff from the grain in your relationships with other people. None of this is comfortable. It is very lonely at times. If you can do it, it can be very rewarding. I love my kids and am grateful for everyone of them. I can still imagine my life without Hope. It has only been a year. All adoptions take time to forge connections. With older child adoptions, connections take more time. The more trauma involved, the more time the connections take. One day, I will realize I can't imagine living without Hope. When it comes, that day will take me by surprise. I will have changed without realizing it.

Tuesday, October 11, 2011

Our Weekend

The girls had a busy weekend. GB enjoyed it a lot.  Hope took Rad with her. She enjoyed the weekend,up until she didn't.

Saturday, GB went food shopping with me, while Hope had her dance class. They were both happy. Afterwards, GB's bio-grandparents picked them up and took them to a fall festival. GB had a great time and spent most of her time with her grandfather. Hope got into a power struggle with the grandparents and lost. Grandpa took GB off to get an air tattoo, and Hope stayed with Grandma trying to get her attitude corrected.

On Sunday, the Dad and MK took all three kids to a different fall festival. Everybody had a great time until Hope heard the word "no" and started screaming and crying. Everybody had to leave.

Monday, MK and I took them apple picking. I made Hope hold my hand for the first hour. She was unhappy. I told her when she demonstrated self control with a good attitude she could let go of my hand, as long as she stayed very close to me. She was able to do that and enjoyed picking the last few apples. Once we were done apple picking, I had my RADling back for the rest of the day.

Today is Therapy Tuesday, so I get to get them off the bus and drive an hour to therapy. Tuesdays are usually Hope's worse day.

I am grateful that GB did pretty  much the same things she would have done on a fall weekend before Hope joined us and enjoyed herself. Hope is still baiting GB, but GB is getting much better at reacting with words, rather than physical aggression. My balance is getting better.

Monday, October 10, 2011

Things I Didn't Know


  • There was a court ruling that said "teacher observation" is an inadequate way to determine whether a goal has been met or not.
  • There has to be a well defined, easily accessible (for parents) method of determining necessity of an Extended Year Program. Regression is not the only criteria they can use to determine eligibility.
  • There have been requirements for adequate teacher training since 2004. This includes training particular to your child's disability(ies).
  • IDEA 2004  raises the quality of  FAPE. NCLB actually did accomplish something.
  • I didn't know you had to save up Mojo before an important meeting. I smiled sweetly Friday. I will spend the  next 4 weeks, until we reconvene, lining up my ducks.

Friday, October 7, 2011

Circular Reasoning

I had a meeting with the Director of Special Education today. GB was suppose to receive reading instruction in a small group of three students, every day, taught by a special education teacher who is also certified in reading. Since there was only three students, the Director did not feel an aide was necessary. However, the three student reading group only happened twice a week. The rest of the week, GB was doing vocabulary, spelling and writing in a third grade class with no support. We did not know it, GB's special ed teacher did not know it, and the Director of Special education said she did not know it  Why? Because nobody at the school was in charge of monitoring GB's reading program and there was no aide to report back to the teacher.. For the next four weeks, the Director of Special Education will be monitoring GB's reading program. At that point, I have a CSE meeting set up to rip her IEP to shreds and redo it, line by line. And round and round we go.

Thursday, October 6, 2011

A Step for Hope

Hope currently sees a shrink twice a month- once at school and once privately. She sees a therapist three times a week- twice at school and once privately. Today, Hope and I went to therapy with her social worker and shrink at school. For most of the past year, these sessions were a waste of time. I did them so I would be labeled an outstanding parent. When the powers to be think you are an outstanding parent, it is easier to get what you need for your kids. This weeks session was different.

The shrink started talking about Hope's meltdown at Fri*ndly's two weeks ago. Hope didn't want to talk about it. The shrink and therapist insisted. They asked Hope why she had been screaming I hit her. Hope shrugged. They asked Hope if I was hitting her. She said no. Then the shrink told her somebody used to hit her in the past, but it wasn't me. Hope looked at him and said, "Nobody hit me. My Texas mom used to spank my butt with a belt". They reiterated that was then and now was different. After Hope went back to class, they both agreed that separating the past from the current reality is what we will be focused on for the foreseeable future. Today felt like progress!

Wednesday, October 5, 2011

CPS and X


A report was called in to CPS that said when my grandson spends a weekend with BioMom (known around here as B3), she leaves him alone with his 10 month old half sister and he babysits and changes her diaper. X is six! X confirmed the report, B3 denied it. CPS isn't sure they need to follow up. If I was physically in Michigan, I would probably be in jail on charges of assaulting an the idiot. He goes with her again Friday after school. I am leaning towards hiring a private investigator to follow her around all weekend.

Anybody saner than I am have ideas that are more productive?

Monday, October 3, 2011

A Good Start

Both girls started the week in a good space. GB did not clobber Hope at all. Hope, while still poking at full speed, did not rage, get physical. or even threaten this weekend. She still loves ballet. She ate dinner 2 out of 3 nights, and actual let herself enjoy another child. Her homework was still undone and went back to school that way. I told her teacher I would help/fight Hope 1/2 hour per assignment and after that it was the schools problem. Reading is still a mystery to Hope and she does not like having to say "I don't know". GB is enjoying her mainstream reading group. On of the girls in it is someone GB has had social contact with on and off for years. The district needed to be reminded of the aide that is suppose to attend these groups with her, but I think it has been resolved. It rained pretty much all weekend, and I am rained out. At least autumn temperatures are here!

Saturday, October 1, 2011

A Visit with the Pyrs





A volunteer from the North East Pyrenees Rescue came to visit today with her two Pyrs', Emma, a one year old female, and Vasa, a three year old male. Both were beautiful and well behaved. It was quickly apparent that a three year old male was a much better fit for our family than a  one year old female. The girls loved them. They were what I expected. If we were to get one, it would be an older male from a rescue. My husband says "No F#@*in way" and "Get an apartment first". I was already contemplating a two bedroom apartment. Decisions, decisions.

Friday, September 30, 2011

The Dad Asked

Last night The Dad asked me to write a post like yesterday's post, except make it about Hope instead of GB. There have been some logistical issues. We have only had Hope for a little over a year. I don't know the real Hope. We haven't broken through the RAD yet. Hope is still physical whenever she rages. And she is still raging. My instant reset button is broken. I know a lot of you understand that.  I can't keep her safe without risking getting hurt- especially in public. I will not willingly take Hope some place public by myself because of that. So today's post won't be the same. It will be shadows of future possibilities.

Hope is an angry little girl. Given her background, it is unreasonable to expect anything else. I get 90% of her anger. Again, it is unreasonable to expect anything else. I do not always deal well with being the constant focus of her anger. The Dad wishes that were different. So do I. Right now it is not.

Hope is not FASD, ASD, Bipolar, or ADHD. She is broken. What happened to her with her first adoptive family broke the child God made. God gave us this child to help her become what he intended. She has music in her soul. She is never as happy as when dancing her ballet. She trusts no one- not even The Dad, although he gets more trust than anyone else. The fact that she does trust The Dad more than anyone else, gives me hope... the ability to trust has not been completely destroyed. Hope is so far behind because of the neglect she lived with- she is missing concepts such as first, last, yesterday, tomorrow. After a year of working on them, they are still not usable. Rhyming words and beginning sounds do not exist to Hope- yet she wants to read and takes every opportunity to "read" to me. A drive that strong comes from a survivor. Hope has cause and effect and the ability to think abstractly. She frequently chooses not to use them, but having them puts her so far ahead of most of our kids.

Part of me regrets adopting Hope. I am too old, Hope's needs are so different from GB's, it never stops. This part of me is real. There is another part of me that knows God meant Hope to be ours. God believes The Dad and I are the people Hope needs to heal. I have found that arguing with God is usually a waste of energy and time. I would rather put that energy into Hope. Hope can heal. I can help.

Thursday, September 29, 2011

Broken?

I have had children in my house for over thirty years. By society's judgement, each child was broken in some way. I never questioned that assumption. After all, I was very busy meeting the needs of these children and fighting schools, social groups, and neighbors, trying to make a place for them. When society's opinion was thrust into my consciousness, I would look at my kids and see why they were considered broken and then move on. There was 9 year old Ralph, who sat and talked to my car's headlights while he snacked on my flowers. There was 14 year old Vernon, who in anger set more than 30 fires in his home town before he came to me. There was a 5 year old who didn't know what a broom was and hadn't ever heard the word no. I was only mildly surprised when he tried to beat up his soccer team... the whole  team. I had children with TBI, schizophrenia,and trauma histories that were beyond anything I could comprehend. Yet these kids went to regular schools and were expected to meet ordinary expectations. It was inevitable that these children, and my others, were considered broken. Yet, even in the beginning, I was aware that "broken" was only part of it.

My kids made me laugh, could be kind, and were frequently creative. They found joy in the ordinary and let me come along for the ride. They had compassion for those weaker or more disadvantaged. Everyday traditions could make their eyes shine. This was my life for a long time. I stopped taking in kids in 2002. My kids were older, had graduated from high school and I enjoyed a year of a social life with friends whose children were also more grown up than not.

GB is my granddaughter. She went to the NICU directly from the birthing room. I took custody of her at two months and her parents were gone before she turned six months. GB didn't smile at all and missed her  early milestones. She  started EI at seven months. I didn't know what was wrong, although I knew there was a problem. Like all my earlier kids, society considered GB broken. But I was different, I had changed. At 11 months, I found out she was FAS. By the time she was four, I knew she was bipolar. At seven and a half, autistic was added. Each diagnosis felt like I had been blindsided. Intellectually, I understood them and knew they were right. Emotionally, I was equally sure there was nothing broken about this child.

It has taken a year of contemplation to come to term with these incompatible ideas. GB is not neuro-typical. She is also not broken. She is exactly what God made her to be. God knows her gifts and her challenges and has given me the honor of being her mom. I love her smile. I love watching her dance as she is carried away by the beat of music.I share her joy as her garden blooms with color.  I enjoy the pride she has in her cartwheels, in her ability to swim, and the food she cooks for us. I know it can take GB several minutes to be able to verbally express a thought. I see that she is able to relax and share real communication with only the few she trusts. I know that I have to check for minefields before I put her in any new situation. I am responsible for making sure she gets enough sleep and that she eats when she needs to. She can't tell me what hurts or why she can't cope. It is part of who she is.

GB is not broken. She is exactly the person God made her to be. She is my gift from Him.

Wednesday, September 28, 2011

Give a fish...

The attitude of entitlement has me pissed off big time. Quasi-adults- people between 26 and 39+- who think that they are entitled to have life's problems solved to their satisfaction by resources outside themselves. I think about when I was in my late twenties and early thirties. The people I knew would never publicly talk about having to exist on bread and water, much less post it on FB. Of course, their money wouldn't have been spent on cigarettes, grand lattes, and drugs... they would have fed their kids. Their money wouldn't have been spent on premium cable, high speed internet, or top-of-the-line data plans for their iphones, either. Their kids would have eaten. A television in every room (including kid's bedrooms) didn't even occur to them. How can you consider yourself independent when you are living off of public assistance, charity, and private bailouts?

Remember the saying "Give a fish, they eat for a day. Teach them to fish, they eat for a life time"? There is a lot of truth in there. The real question becomes "What do you do when they decide learning to fish is too much work?" I don't comprehend. It is like I don't speak the same language and there are no translators around. I find it mind boggling.

This is my rant and a regular post will return tomorrow. I will go back to speaking a language I do understand.

Tuesday, September 27, 2011

Tudu is back!

Tudu is one of my favorite bloggers. She had to shut down for awhile, but she is back. Check her out at Finishing off my family. There are days she keeps me going.

Hope's Class May Have a Real Therapist

Hope's class has a new therapist. Third one in the 13 months we have had Hope. I met with him. He seemed almost lost and definitely uncomfortable. I had just about given up when he brought up her diagnosis. It turns out the school has Hope's diagnosis down as an adjustment disorder. After observing Hope for several hours, in her class, over the course of a week, the therapist spent hours going through Hope's records. The poor therapist was struggling to find a diplomatic way to tell me my daughter had Reactive Attachment Disorder. After I stopped laughing, I gave him a short history. He was amazed she is doing so well after only being with us for a year.  I guess everything is relative.

Monday, September 26, 2011

Hope's CSE


We had a CSE for Hope this morning. It was the first one for Hope without Mrs. V.S. Chairperson. Everybody was prepared with the materials needed. The speech therapist went over the speech eval done on Hope over the summer. She provided detailed information and well formulated goals for Hope's IEP. Hope teacher discussed where Hope was in the process of learning to read and said right now, Hope requires her one on one involvement to read. Nobody at the meeting seemed aware of district standards to be promoted to first grade. Mrs. Director will find out before we meet again.

I have 6 week programs reviews scheduled for both girls, back to back. I can't believe how smoothly this year is progressing. Not at all the black sinkhole of energy it was last year. Thank you, God! I really appreciate it!

Sunday, September 25, 2011

God Came Swimming


Hope and GB at the indoor pool


The Dad's attempt at letting yesterday be a new day for Hope didn't work.  She made it through dance, but didn't last the party. Fortunately, it was only twenty feet to get out of the building. The Dad has had high hopes for the progress he has seen (and hadn't physically seen a meltdown, since he is usually not here for them) and was very disillusioned about Hope's rage. MK took him to the movies last night, but it didn't help.

We woke up this morning and I couldn't stand dealing with the behavior and attitudes that would have to be dealt with at church. Everybody needed something different. So we all went swimming. When Hope asked why we weren't going to church, I told her we were bringing God swimming with us. The kids burnt off some energy, the adults relaxed a bit.

All swum out
We have Hope's first CSE of the year tomorrow and do not see the shrink for another three weeks. I hadn't thought the rages were gone, so I don't have as much to rethink. I decided some time ago that I would not be taking Hope out in public by myself and that is still true. The Dad has to figure out for himself what he thinks they can handle.




Saturday, September 24, 2011

The Good, the Bad and the Ugly.

The Good: It was school pictures yesterday and Hope held it together.

The Bad: As soon as I took her homework out of the book bag, the Hope I know so well was with me. Arms crossed, face set in a glare, and the traditional "You are being mean to me".

We took GB to her gymnastics class. GB had an outstanding 90 minute class. It was non-stop movement. Hope got no homework done. Afterwards, we met friends at Fri*ndly for dinner.

The Good: The Dad was there so I didn't have to deal with Hope's rage by myself.

The Ugly: Hope refused to eat, screamed, yelled I was hitting her (I wasn't) and that I never let her eat. I eventually figured out she was not going to stop (duh) and went to take Hope to the car. She immediately got physical. The Dad picked her up and carried her out. This particular Fri*ndly's is in a large mall. As the Dad carried her out, the manager of the restaurant stopped me to see if a coloring book or a balloon would help. By the time I got away from him, The Dad was 40 feet ahead of me. Hope was trying to bite and punch him, all the while yelling that he was hurting her. They received a mixed response; some people said it was good to see a parent that could do the tough things; other people said that poor child. We made it to the car without the police being called on us. I stayed in the car with a kicking, screaming Hope, while the Dad went back to the restaurant. I played 8 games of Word Warp on the ipad while Hope screamed. When the Dad was finished and brought GB back to the car, he was still shaken.

This morning it is like nothing happened. Hope is at her dancing lessons and I think the Dad is going to take her to a birthday party this afternoon. I, personally, don't plan on ever bringing her out in public again. The Papoose board is too heavy to carry around.