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


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


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.