Thursday, June 30, 2011

I Am Happy Dancing!

I have four whole hours of respite today! Hope has had a tough week and I am sooooo ready.  I made it all week with my Therapeutic panties, but I am so happy that for four hours today I WON"T NEED THEM! I don't know exactly what I will do with my break, but I'm sure I can think of something ;)

Wednesday, June 29, 2011

Tuesday Therapy

Yesterday was therapy. The therapist said Hope was accomplishing a lot in therapy, but was unable to tolerate therapy for more than a short time. On the way home, Hope raged until she fell asleep. I said nothing to her, because anything I say makes it worse. Instead, I concentrated on driving and imagined the earth opening up and swallowing the Texas parents. Not Christian, not productive, not even particularly fair. It got me home. Sometimes I don't like myself when I am dealing with Hope.

Tuesday, June 28, 2011

It Is My Own Fault

Long morning. The kitchen was a wreck. The kids wanted to face paint. I let them while I was cleaning. Hope looks great! GB is covered from the top of her head to her shoulders in 1/4 inch thick green face paint. I know what I am going to be doing for the next couple of hours. And it won't be finishing the kitchen :(

Monday, June 27, 2011

I Can Learn

Goals are illusive things, especially when talking about a special needs child. They change over time. They change as you grow and redefine what is important. They change as your child's abilities and deficits become more apparent.

I read an interesting post over at Fighting Monsters with Rubber Swords this past weekend. The author talks about his assumption that the best goal for his daughter would be to succeed in the NT world. His daughter is now eleven and it occurred to him that maybe he was setting her up for failure.

With my oldest two, from the beginning, my mindset was they could do anything they put their minds to. I assumed they would graduate with a regular diploma. I assumed they would compete in the NT world. Both J and MK did. They earned regular high school diplomas and went out to tackle the working world. It was a success as far as them  meeting my goals. Ultimately, though, for J and MK as people, the cost may have been too high. J doesn't remember the thrill of succeeding- he remembers the years of being the stupid kid, the feeling of not being able to connect with NT kids. MK needs support, but is not eligible for services because I insisted she compete with everyone else and succeed. They came so close, but maybe I, like Schuyler's Dad fears,  just set them up for failure. It never even crossed my mind at the time.

When we first started on our journey with GB, my goal was for her to attend kindergarten in our neighborhood school. She did that. As far as the world was concerned, it was a rousing success. From GB's viewpoint, not so much. She remembers being very unhappy and dreading school. In the last two years, I have done a lot of reevaluating. Part of it was looking at my oldest two and what they need to succeed and be happy. Part of it was getting accurate information on what GB's deficits are and what she can realistically can handle. Most of it is realizing that God has a purpose for GB and my job is to help her fulfill God's purpose for her life, not mine.

When I look back on how I made decisions for my children, with the best of intentions, I cringe at my arrogance. What was done, was done. However, I still have the opportunity to support GB in fulfilling God's plan for her and will do my best. She is not NT and never will be.

I don't have to continue making the same mistakes.

Sunday, June 26, 2011

Reiki Results

It has now been a week since my Reiki treatment. The first few nights after the treatment, my legs weren't jumping and I slept well. They are back to jumping again. I saw no difference in the trembling, my balance, or my strength. It was only one one-hour treatment, so I really wasn't expecting much. Considering I had three good nights in a row after it, which almost never happens, I am inclined to believe it did something. I am going to commit to it for three weeks and reevaluate  its effect.

We are leaving for NY in an hour. Please keep all of us in your prayers.

Saturday, June 25, 2011

Friday, June 24, 2011

Too Much Time Away

We have been away from home for much too long. It isn't by choice. While we were in the North Carolina mountains, my parents house sold. Bittersweet news. Good that the house sold.  Good that it is time to move on. However, time is dragging me along, even though I don't feel ready.

We were suppose to be on our way  yesterday. We weren't. The Dad bought MK a plane ticket home. She is afraid of flying. She spent the night telling me how horrible I am. It  got old quick. I lost count of the number of times Hope raged. When she wasn't raging she was poking. Chinese water torture. GB did OK- until bedtime. It took her over an hour to cry herself to sleep. Nothing I said or did made a difference.

Today is a new day. We still aren't going home. Maybe the day will be better anyway.

Thursday, June 23, 2011

When You Don't Agree

Presenting a united front is important when raising any children. It is even more important when raising special needs children who rely on you for structure and consistency. When raising (a) child(ren) with RAD, a united front is about survival.

Unless you are a single parent, it is inevitable there will come a day when you and your partner will experience your child differently and the united front will loom as a difficult or even impossible achievement. It helps to have a process in place to resolve differences before your united front  is called into question. In creating your process, it is helpful to first agree upon each of your children's strengths, needs and capabilities. I suggest this be done in writing as it is the best way to make sure you are both communicating clearly.

Next, it is important to identify family principles. We use three. 1. Have a good attitude, 2. Be kind, 3. Listen the first time someone speaks to you. I continually review these with my girls when things are going well (no laughter, please).

Now for the tricky part. There will be times when you and your partner see the same behavior at the same time and interpret it differently. Telling your partner he/she is crazy mistaken generally doesn't work well. I have tried and it never rarely works well. I do not have a nice, clear cut solution to share.

If I am in a therapeutic frame of mind, there are a couple of things I try. I try to identify how import the brewing disagreement is. Can I just let it go and move on? If I can't just let it go, I try to determine how important it is to my partner.  Once I have done that, I try to look at both of us honestly and determine who is in a more objective, balanced state. Of course, if it is an ongoing disagreement, all of the above isn't going to help much.

That is where I find myself today. The Dad and I are at the ongoing disagreement point. I can tell you that if I weren't a therapeutic parent, I would be threatening to get my own apartment, take GB and leave. I AM a therapeutic parent, so of course  that was not my response.

We will still be talking and trying to find our united front. Until then, I predict an early bedtime for the girls and I tonight.

If you have something that works for you, I would love to hear about it (apartments are NOT cheap).

Wednesday, June 22, 2011

Together Again!

Everybody safely arrived last night. The whole crew went bowling this morning, eight of us actually bowling. two games a piece. With my sister's coupons, we had change from our thirty dollars. GB had a double strike, as did The Dad. GB broke a hundred. Hope had a spare. The scores varied a lot, from 55 to 180. I didn't bowl, but I enjoyed the air conditioning and made a good cheerleader!

Hope and GB were very happy to see each other, but it only lasted a  short time. They are back to the usual bickering. My oldest daughter is back to driving me crazy. She is hanging out with my 13 year old nephew and they are both enjoying baiting GB.  J is not NT, but he is able to set her off.

I am really enjoying spending time with my sister, though.

Tuesday, June 21, 2011

Random Ramblings

My sister and niece spent the weekend with us in the North Carolina mountains. It was really good to see them again. On Sunday, they left to go back to Raleigh and took GB and I with them. The rest of the crew is coming to Raleigh today. Hope and GB enjoyed a two day break from each other.

GB was thrilled to have extra time with her almost 17 year old cousin, Danae. Hope was thrilled to have the spot light all to herself. Hope can now swim the length of the pool without stopping. GB is developing a nice dive.

We received an unexpected call from the realtor for my parents house Saturday. It looks like it is sold. We have less than 6 weeks to empty out the house. It hit me pretty hard. My mom has been gone over three years and I thought I was ready. Maybe not. My sister came up with the idea of moving Mom's koi pond to her house. It made me feel much better. I suspect it is going to be very difficult and a lot of work.

We were supposed to be home by Saturday. I am now wondering if it makes more sense to spend the weekend in North Myrtle Beach. I still hope to see a Soul Sister or two before I leave the Carolinas.

Monday, June 20, 2011

My God Comes in Flavors

WARNING: If you don't tolerate beliefs that differ from yours very well, this is not a post for you. Feel free to leave now.

I was born a Roman Catholic. I went to a Catholic school for nine years. I am Christian. My children are Christian. I believe there is only one God. I believe that God is so much, that we, as humans, do not have the capacity to understand anything but a small portion of God.

Starting with the premise that there is only one God, I looked around at the many different beliefs. Either I was right and all the others were wrong, I was wrong and somebody else was right OR  we were all blind men looking at the elephant.

When it comes to God, I believe we are all blind men. We touch the part of God closest to us and assume that is all there is.   I know my Christian beliefs are not wrong. However, I also feel that a lot of Christians put God in a box and try to limit Him and what He is capable of. I believe that the parts of God seen by Jews, Muslims, Buddhists, Shintos, and Lutherans are just as real as mine. There is only one God.  Each have touched a piece of God, each a different piece. None of them are wrong- each is just an understanding of a limited portion of all God is.

When I was young, I read a book, Mister God this is Anna by Pappas Fynn. I read it again each decade of my life. The older and more experienced I get, the more the book resonates with me. God is so enormous, it is silly to put him in a box, and, more importantly, foolish to try to limit Him to what we understand.

I will return to my usual posts tomorrow.

Sunday, June 19, 2011

My Experience with Reiki

Yesterday, my SIL got everyone out of the house (no easy task) and I had my first Reiki session. I have major neurological problems- two kinds of neuropathy and a white matter disease- and at this point they are all progressing. My SIL believes she can use Reiki to heal me of all of them. I agreed to suspend disbelieve and give it a chance.

My SIL has a room that she uses for Reiki and meditation. One wall has 6" squares, each with a Reiki symbol, arranged in two sets on the far wall. There are two antique brass bowls, each with a wooden cylinder, and each makes its own distinctive sound.  There are many crystals of varying sizes and colors. There was  a large massage table in the center.  Music was playing, but low enough that I wasn't trying to identify it. Directly outside a pair of French doors, there was a a ten foot waterfall,the sound of which attracted my attention much more than the music.

I laid down and closed my eyes. I heard her putting something on the table, I think in the four corners. My legs started twitching and then went into spasms. Even though my eyes were closed, I saw sea green everywhere.  I noticed an unfamiliar odor- not unpleasant, but definitely some thing I didn't recognize. The color slowly changed to grey. I don't really know how long it took,  but it seemed like time was stretched  out.

I am not sure what, if anything, happened. My SIL was pleased and said it went well. I am still processing the whole episode. When I draw conclusions, I'll share.

Friday, June 17, 2011

Reiki, Maybe

I haven't seen my sister-in-law for more than a couple of hours at a time since GB was a baby. What little time we have spent together has only been in large family crowds. She and The Dad's brother recently retired and moved from Chicago to the mountains of North Carolina. They built an enormous house with a large pool and a hot tub. We have been here since Wednesday.

The kids are living in the pool and by 8:30 are out on their feet. We have had plenty of opportunity to catch up. The one thing that stood out was that 4 years ago, my SIL became a Reiki master. She arranged for everybody but her and I to be out of the house for two hours tomorrow and is going to introduce me to the art.

I know several Trauma Mamas that use Reiki, not only for themselves, but to help their kids heal. I am looking forward to finding out at least the basics tomorrow. Maybe I can use it to help Hope...

Thursday, June 16, 2011

Vote for GB!

GB's gymnastics is having an end of the year picture contest. She chose this picture.

She would appreciate anybody who was willing to click on this link to the picture on Facebook and "like" it.  Thanks :)

Hope Has a GREAT Afternoon!

Hope started out the day miserable.  She screamed, slammed, and raged at The Dad. This afternoon she decide to be pleasant and cooperative. We spent the afternoon swimming. When we started, Hope couldn't swim. By the time the afternoon was over, Hope could swim across the whole pool. She is so proud of herself!

Not to be left out, GB did a running jump and caught the beach ball. Everyone is having a good time and yesterday's car  ride is a distant memory :)

Wednesday, June 15, 2011

Pray for me

I am in the van, traveling to NC. All six of us, plus Ellie the service dog. I should be asking for prayers for Hope, but I am unable to be that unselfish at the moment. Therapeutic Big Girl Panties, where are you when I need you most?

Tuesday, June 14, 2011

GB's Gymnastics

 GB's end of the year gymnastics show was last night. Hope raged before and after the show, but was quiet while it was happening. GB was nervous, excited, and tipped into overwhelmed a couple of times. Her bio-grandparents came and made her night. They cheered, they clapped, and they took pictures. When the show was over, we all went to the chinese buffet for dinner. GB talked as much as she ate. Hope spent  more time looking for trouble than she did eating. When the Dad announced GB was riding with him, Hope went into a rage. I am getting awfully tired of dealing with rages. Hope has very little cause and effect reasoning

and is always shocked when she doesn't get what she wants. The Dad has difficulty dealing with her for more than an hour at a time.

GB will be moving to the highest class her gym has. She was apprehensive, but after the show today, she decided she could keep up with them. Only one of  her NT friends made that class, so next year will be different.

The only thing that remains constant is change. My grandbaby is growing up.

Monday, June 13, 2011

The Cycle of RAD

 My Perspectives Over the Years
All of us Trauma Mama's have the ultimate goal of healing for our RADlings. Of course, healing is a relative concept. Our RADlings, by definition,  have been exposed to early intense trauma. This inevitably affects the development of their brains.  The formation of personality is considered to be genetic and environmentally determined.

First, look at the genetics. If our RADlings were conceived by parents who themselves came from strong genetic stock, the odds are very good that they would not have RAD and would still be with their biological family. So most of these kinds have susceptibilities to FASD, mental illnesses, and all sorts of other disorders.

RAD is a self-protective response to trauma, neglect, and abuse so intense that most people really can't conceive of what these kids survived. RAD really defines how they perceive and react to their world. Personalities are formed by how children perceive and interact with their world. My 5 year old Hope has a personality and is trying to solidify it. Hope will never be easy going. She will always be intense and strong willed. It is part of the RAD, but as her personality develops, it will incorporate the intensity and stubbornness into it.  The same interconnected experiences that formed RAD are also forming the RADlet's personality. With out healing, our RADlets are headed  for Borderline Personality Disorder, Narcissistic Disorder, or even  becoming a  sociopath.

Even when our Radlets experience healing, that does not necessarily mean complete healing. They will never be what they would have been had they had experienced functional love from the very beginning. Their personality is forming in the midst of RAD and some of RAD will be a part of them forever. My oldest RAD, when younger, only felt loved when someone was spending on her. She has done a lot of growing and experiences other gestures as love. Still, buying her something is the fasted way to make her feel loved.

My oldest RADish is 25 years old. There seems to be cycles of easier years interspersed between harder years. 7 and 8 were difficult and then healing seemed to be happening until she was 14 when we went off on another spike of RAD behaviors. 18 and 19 were good years- she stepped off the cliff when she realized she wasn't ready to grow up after she graduated from high school. We just started another easier cycle the last eight months or so, where she seems to be maturing and healing. I don't know, at this point, if we have another crash ahead of us.

My goals have evolved over the years. First, I was going for normal. After many years in the trenches, my goal was simply to keep them out of jail. Now, with a more balanced perspective, my goal is to help my children  heal as much as they are capable of healing, and give them as many tools as I can so that they are as productive and happy adults- at least as productive and happy as they are capable of.

Sunday, June 12, 2011

Social Skills Group

GB attended her second social skills group. She was eager to go. She made a carry-all, a Father's Day Card, and the mirror she is holding in the picture. I still couldn't leave her, but I was able to stay in the waiting room and read. She did very well. The next time she goes, the group is going bowling. GB is already psyched!

I may be having trouble coping with the idea of GB being Autistic, but it doesn't seem to be slowing  GB down.

Saturday, June 11, 2011

In Public

Hope's "hyper-sexuality" moved into the public arena last night. Fortunately, she had already been moved to the adult table for her terrible, awful, no-good week. Therefore, only people who are legally adults were exposed to her. (Pun intended.) If you can't laugh, you won't survive.

Friday, June 10, 2011

Reality Check

Yesterday, after school, Hope, GB, and I went to meet GB's MSC (Medicaid Service Coordinator) at Mickey D's. I had a bunch of paper work to sign and a report to read. The report cover GB's needs and deficits and was still four pages long. GB's social skills and adaptive behavioral skills are at approx four years. Reading this report made me wonder if the correct diagnosis for GB is Autism, rather than PDD-NOS or Aspergers. GB chit chatted with the MSC and when she was done, went off to play. Hope followed GB around, getting in face and interfering with what ever she was doing in the play place. GB got more and more irritated and Hope could not be redirected. I finally had Hope sit  next to me and got through everything I needed to.

We went home. GB wanted nothing to do with Hope and my head was still back with the report. We were having a huge thunder storm, which kept  the girls inside. They bickered, I separated them. One clung, then the other clung, then they both tried to cling. We had dinner. I took both girls upstairs for night time meds. They were bickering again. I told them both to knock it off and Hope clawed me.

The night never really got better. This morning GB was teary and Hope flat out refused to get on the bus. My head is still at yesterday's meeting. Need to reset before the weekend.

Thursday, June 9, 2011

Meeting with the School- Full of Surprises

The Dad and I showed up at our therapy session for Hope at the school. We spent about ten minutes filling the therapist in on the past weeks rages. She called down to Hope's classroom and asked one of the aides to bring her up. Shortly after there was a knock on the door (the therapist rates an air conditioner) and in comes Hope. Her teacher had brought her up instead of the aide. First time that has happened. The teacher asked to stay. She wanted to talk to us about Hope's rage Monday. I assumed she meant when Hope beat the crap out of me. She assumed I knew Hope had raged at school. I didn't know Hope had raged at school. I asked why I hadn't heard about it before. Miss VY Teacher said she assumed the Director of Special Ed had told me.

The rage started in the classroom, and by the time the 2 aides got her to the bus, it took ten minutes and three people to get Hope on the bus. Nobody called me. The driver didn't tell me, the aide on the bus didn't tell me. Hope came off the bus crying, but that is not unusual. All Hope said was that she wanted me to pick her up.

It is good that the school has finally seen Hope in full rage mode. I wish they had told me when it happened, because if they had, I would not have taken her to gymnastics. That MIGHT have avoided the rage in the waiting room. Maybe I wouldn't have all the bruises and gouges on my arms. It is 95 degrees here and I refuse to cover them up. Three people to wrestle her on to the bus and nobody told me about it. Sigh.

Wednesday, June 8, 2011

Not Enough Safe Places in this World

As a result of Hope's meltdown Monday at gymnastics and her rage on the way home Sunday, I would not drive her an hour to therapy yesterday. The Dad came home and took both girls. The therapist thought it was great that Hope verbalized that she had a meltdown, even though Hope couldn't tell her why. Therapist and Dad discussed whether my "difficulty" reading Hope's body language could be contributing to Hope giving me a hard time. UGH.

Hope is back on the full dose of the Risperdal. I just walked 1 mile with Ellie for the 500 club (now at 33/500). Now I am going to lay down in the air conditioning because 1) I am hot, 2) I am still sore, 3) I am feeling overwhelmed.

Of course, that won't last long... we have a 2:15 therapy appointment with Hope at the school. Sigh.

Tuesday, June 7, 2011

To Medicate or Not

To start, I want to make it clear that I am pro psychotropic drugs for any person, including children, that need them. GB has Bipolar I with psychotic features, as well as ASD and FASD. When she is stable on the right medication her joy is infectious. I know she will be on medication for the rest of her life and I am grateful that there are medications that work for her. My feeling about Hope and medication are different.

Hope is not Bipolar, ADHD, FASD, or ASD. Hope is RAD. Since all the other disorders were eliminated, one by one, by seeing various medical professionals, the goal has been to help Hope heal, and ultimately  have her medication free. When she came to us, the first thing we eliminated was clonodine. That left us with .75 mg of Risperidal a day. We have gradually reduce that over the last four months and now Hope is only getting .25 mg a day. Until she spoke to her first adoptive family (AKA, The Texas Parents), she was doing OK on the reduced dose of Risperdal. Since then, she is back to long rages again.

Last night, at  gymnastics, Hope raged in the waiting room. In the  almost an hour it took for The Dad to get to us from work, I manged to restrain her and keep her from hurting anybody but me. When The Dad showed up to take over, I was bloody, my arms were swollen, and I had bruises all over. I gave her .5 mg Risperidal last night and it still took her 1 1/2 hours to go to sleep. The Dad wants to go back to Hope getting .25 mg after school and .5 mg Risperidal at night.

I understand his feelings. I look beat up today and looked even worse last night. BUT, before that phone call, we could contain Hope on .25 mg of Risperdal and were contemplating eliminating it completely. And that is my dilemma. Hope's issued are caused by trauma- trauma she is not responsible for and should have never happened. GB will always be Bipolar I... Hope can heal and have healthy relationships. Medication is a given for GB. Medication for Hope appears to be about controlling her behavior.

I have never believed in using medication for the sole purpose of controlling a child's behavior. So now there is a decision; to medicate or not. What is in Hope's best interests?

Monday, June 6, 2011

Why Would...

I knew that there would be payback after the glorious day we had Saturday. Hope started tantruming as soon as we left for home. She eventually fell asleep. When she woke up, she went into a full blown rage. It lasted the rest of the ride home and flared up up twice more after we were home. So why do I periodically make decisions that I KNOW will have high payback?

  • Hope is experience deprived. She needs as many different experiences as she can assimilate.
  • One of the experiences Hope lacks is normal family memories. We make memories.
  • GB has always had memory-making experiences and she continues to need them.
  • Us parents need the opportunity to have friends and enjoy life.
Yes, reentry today was exhausting and just plain hard. That doesn't mean yesterday shouldn't have happened. It just means that sometimes you know something is worth its steep price.

Sunday, June 5, 2011

A Day with a Soul Sister!

Yesterday's visit with Kristine was even better then I hoped for. The Dads hit it off, as did Noah and GB. All the kids had a blast at the zoo, swimming, and then Sonic for dinner. Kristine and I skipped out of the swimming and slipped into a bar for some girl talk and a drink. We rejoined the our families for dinner. All the kids did relatively well and had a great time. Noah and GB were able to deal with each other easily. Since we had each other, it didn't matter what the parents of NT kids thought. I can't wait until we can do it again!

I love Trauma Mamas and especially Soul Sisters! It was priceless :)

Saturday, June 4, 2011

Running Away

I am, really. Hope's wrist leash,her time out mat, and all the pool stuff are packed. Of course, I have The Dad, Hope, and GB with me, so it isn't like I am running away for real. BUT I get to spend the day with a Soul Sister who was in my house last year and will be in my house this year. I am going to meet Kristine of at the philadelphia zoo. After the zoo, we are going back to the motel so the kids and hubbys  can swim. We may swim too, but mostly we are going to talk (maybe drink). I can't tell you how excited I am. Hopefully, I'll have pictures later. Right now, I am Doing the Happy Dance!

Friday, June 3, 2011

Getting Smarter

After my break through with Hope, not only was I ready for the crazies, I was preemptive. All  yesterday Hope stayed right with me. She did get annoyed late yesterday afternoon when I was talking to GB and not her. She started to write on herself and I was immediately on it. I told her sit on her mat. She gave me a flat out "NO". When I told her she could comply or she could skip her Friday field trip, she sat down. In less than a minute she was trying to bite me. I restrained her and she raged. It only lasted a half hour or so and then she relaxed and we cuddled. She wouldn't eat again, so I put her to bed. This morning I was ready for her. As soon as she was dressed, she was sitting until I was ready for my day. She was with me while I made breakfast, made GB lunch, and did GB's hair. She held my hand while we walked out to the driveway and waited for the bus. As the bus pulled up, she smiled at me and said "I love you Mama". Now, a six hour breather.

Thursday, June 2, 2011

A Great Night !

Hope did very well sitting on her mat yesterday afternoon. She did so well, I let her join the kids swimming. After twenty minutes it was time to get out and dry off for dinner. Hope took my hand and said "We are still stuck like glue". We stayed stuck like glue until bedtime. When I kissed her goodnight, she SMILED at me and said "I like when we are stuck like glue". I let the girls use the good dream spray and they slept like a charm. They are still sleeping now and I am savoring the best night we've had in weeks.

Wednesday, June 1, 2011

The Rest of Yesterday

Yesterday never got much better. I was  hit, kicked, and stabbed with a pencil. On the way home from therapy, Hope drew all over her arms and legs with a pen and colored her lips bright pink with a marker. When we got home, I put her on her mat,  sitting  next to me. I ran a bath, but left her sitting until I regrouped. My husband was home before I was able to do that. I gladly gave Hope to him and he took out the scrub brush and got most of the stuff off.

Hope started this morning holding my hand and had shown enough control to sit on her mat and read before the bus comes. The Director of Special Ed rode the bus with the girls, and they came off the bus in good shape. Hope "lost" her HW and was unable to do it. Hope is sitting on her mat. MK has a friend and her kids over and everybody else is swimming. In a very sincere voice, I told her I hoped she would make a better choice next time.

How many days to Orlando?