September Update on Goldilocks

We have attended two major meetings about Goldilocks in the past few weeks. The first one was an IEP/Child Family Team meeting with Day Treatment at the public school. There are so many things to say about this meeting. However, I am not going to go on for hours (I have already done that with my face to face friends...LOL). One thing that really sticks out from the meeting is that one of the teachers was trying to comfort Goldilocks about her very poor math skills. The teacher told a story about how she herself had FAILED three years of high school math and had to retake them all. Despite obviously not being gifted in math, she went on to become an eighth grade math teacher! Why do we wonder about the failure of our educational system in our country with information like that? By the way, no one else in the room seemed at all shocked by this story -- except for me.

Another thing about the meeting that surprised me was Goldilocks' honest candor. She told them that she needed to have very strict rules and permission for everything or "my brain and I will do bad things". She said she did not want to be empowered to make even the simplest decisions. For instance, she wants to wait to be told to start eating at school, whereas the teacher wants her to be self-empowered. She said she would do many bad things if she was returned home. She said that there were too many "openings" (opportunities to be up to no good) when she lived at home and that she would make bad choices at home. She mentioned to them that she had put poisonous substances on her brother's toothbrush. She told them that as soon as there are openings she will make bad choices! They asked her how much control she had over her brain on a scale of 0 (no control) to 10 (total control). She said a 2 or 3 but even a lower number when living at home. Her honesty really left them scratching their heads.

A few days later we attended another meeting. This one was a Child Family Team meeting to welcome her into the IAFT program (mental health foster care) and at the same time to simultaneously start the process to discharge her from IAFT. Yes, right from that very first meeting, they began to figure out how quickly they will be able to discharge her. Goldilocks did not attend this meeting, but an interview with her was read aloud to the group. In this interview she explained that what made home unacceptable was that there were holidays, noise, busy schedules, and sometimes things did not go as planned. On top of all that, her very annoying brother lives there. One example given in the interview was "Mom will say we have four errands to run or five items to get at the store and we will end up going on more errands or getting more or less things at the store than she said." Also, she said that her family could not help her calm down in a crisis. A crisis could be as small as her brother needing new shoes but she doesn't need any so doesn't get anything purchased for her. Another was the possibility of a store not having (insert item) that Mom said she was going to purchase. For Goldilocks, such everyday occurrences are catastrophes. She stated that getting in trouble or having consequences for her actions did not help her deal with the crisis. Consequently, no amount of good parenting helps this child resolve her issues. She is screaming for help! But she clearly states that she cannot or will not accept it from her family.

Lastly, despite the school stating that she is working on a third to fourth grade level but is currently enrolled in the eighth grade, they gave her three A's and one B on her report card. This includes an A in English, even though she spells very poorly and doesn't use punctuation or proper sentence structure. When I questioned the grades, the school stated, "We are not in the business of failing students," and "We are trying to raise her self esteem." I guess they are not in the business of educating students, either! Apparently, if you have a special education label, you get a free ride with no real education. I am just beyond frustrated.

Blessings, Dawn

Update On Goldilocks

If only this smile was a real reflection of how Goldilocks feels about us.

My husband and I attended back to school night this week. It was a hard night all around for us. We have been devoted homeschool parents for 16 years. To say we felt uncomfortable in the classroom of a day treatment program in the public school would be an understatement. However, for the most part we were treated kindly by the staff. When it comes to raising Goldilocks, all of our expectations, hopes and dreams as parents and knowledge about how to raise kids has been dashed.

Nothing...NOTHING that we have tried has worked with this child. It was disheartening and exhausting to hear this new brand of professionals carrying on about how they were "going to teach her the tools to help her come home and be kind and respectful to her family". Really?! Do they think she hasn't been taught those tools since she was two years old by her family, friends, Sunday school teachers, therapists, one-on-one workers, psychiatrists, caseworkers, and so many more? They also told us that she was doing well and was a delight in class. I know that this is what most parents dream to hear, but it broke our hearts. You see, when we were living with Goldilocks and she was abusing us and acting out with so many negative behaviors, we thought she couldn't help it. We thought she was unable to pull herself together and behave. We thought that there was something so wrong in her brain that she was unable to be calm and kind. Now, it has been over five months since she ran away from home. She is doing well in her out of home placement, did fairly well at camp and now is being successful at day treatment. Yes, all of these environments are incredibly therapeutic and have very small adult-to-child ratios. In fact, the ratio of adult to student is smaller in day treatment than my homeschool classroom was when she was here. BUT it is still a shock to realize that she (in some ways) chose to treat us the way she did. She has even told her caregivers that she could have behaved better -- if she had wanted to.

As for us ~ her family ... Now that we have escaped the chaos, screaming, taunting, hitting, pinching, biting, growling, death threats, destruction of property, stealing, sneaking, and hatred that Goldilocks treated us to everyday, we don't want to live that way anymore. Who could blame us? For ELEVEN years we did everything professionals told us to do and for ELEVEN years she treated us like that. We have discovered what it is like to breathe, relax, take a mid-day catnap without worrying about anyone's safety, and just enjoy each other. All of the children, including our adult son, have begged us to never let her come back. This whole situation is so heartbreaking. We can't make any promises to them. The state certainly expects to put her back someday. Even Goldilocks says she plans to come home someday (when she is ready but she's clear she doesn't want to come home at this time). Don't get me wrong -- we all love Goldilocks. We want what is best for her. We will fight for a long time into the future to give her the best opportunities we can. However, I totally can't imagine LIVING IN THE SAME HOUSE with her again. Our hearts are bleeding, and we are being stretched in ways that are so painful.

A few more changes and facts ~

• Our private caregiver's license has finally come through. Goldilocks should be authorized for this service in a matter of days. All this means that we should be done with the phase of private paying within a week. Thank goodness. We are totally out of money and she was going to have to move, possibly out of the state in a matter of days. We look forward to only paying the co-pay which is still many hundreds of dollars every month. However, hundreds of dollars is better than thousands of dollars every month, and while we are struggling financially, we will find a way to cope.   
• She should be able to stay in day treatment for six to nine months. 
• We are hoping that she can stay in intensive therapeutic foster care for at least a year ~ hopefully longer.
• Goldilocks and the rest of the kids saw each other at the state fair last week. Her class was on a field trip and we ran into them. It was the first time the kids had seen each other since that fateful night that Goldilocks ran away. Everyone was really stressed by the encounter, even though it was peaceful.

I just keep saying, "God is in control". This experience is way too big for me to deal with alone.

Blessings, Dawn

Medical Update on the Kids

It seems like it is time to update here about the kids medical issues. If for no other reason, then so it all can stop swishing around in my head. There is lots of new information right now and I need to start compartmentalizing it.

*All of the pictures in this post are from blueberry picking recently. After blueberry picking, the kids enjoyed a very cold splash in a mountain stream.

Tim 23 ~ Tim has been an irritable person most of his life. However, in the past few years he has struggled more and more with irritability and frustrations over daily activities. Every little speed bump of life is like hitting a mountainside to him. We decided to leave conventional medicine (that was giving us almost no help) and look into alternative medicines. We had him tested for cortisone levels and tests to see how his adrenals were doing. The test results are back and indeed his cortisone levels are very high and his adrenals are not doing well at all. Testing of his neurotransmitters revealed that two of them are very low. These are serotonin and GABA, which help with happiness and a feeling of well being. The doctor started him on some new supplements, but she told us upfront that it might not be enough, since his brain is so badly injured. So far, he is complaining of having lots of trouble waking up in the morning. However, he has been functioning better and having more small pleasant moments than before. We are hopeful that this new protocol will help him over the coming month. We are also trying to stimulate more alpha waves in his brain and decrease the amount of his beta brainwaves. One way to accomplish this is by using classical music. We are playing lots of Bach around here right now. So far, I am seeing a little bit of improvement in mood while the music is on, but as soon as the music stops, he is right back to not feeling well. We plan to purchase Wild Divine soon. Our psychologist has been suggesting it for years. Now we are going to take the leap. It should be useful to multiple people in our home.

We are also exploring changing Tim's diet a bit. He has a latex allergy and we found out that there are several foods that cross-react with latex due to having the same or similar latex proteins. One such food is bananas. He has been allergic to them for years. Now that I see the list of what other foods he might react to, I am realizing that he already avoids some of them because they make him feel bad. It seems like this could be contributing to his mood as well.

Furthermore, we needed to get him a psychological evaluation to keep him at the brain injury program he is now attending four days a week. The results are not back yet, but the psychologist wanted to tell us about his IQ. The verbal part of an IQ is very noticeable when people interact to people because it includes vocabulary, sentence structure, comprehension and carrying on a conversation. Tim has a very high verbal IQ in the superior range. However, the rest of the scores that make up his IQ are in the low average or even below. With such a high verbal intelligence, Tim is able to speak with complex vocabulary and comprehend what others are saying even in a complicated conversation. This explains why there are people (such as the teacher he was having trouble with recently) who think there is nothing wrong with him and accuse him of not applying himself. It takes longer to realize out that he processes information slowly, has a terrible working memory, and has very poor math skills. All of this combines to make it difficult for him to navigate his world, to manage time or even remember his phone number. So when the experts average out his IQ it really cannot reflect Tim's abilities at all. In fact, the doctor said that Tim falls into a very narrow category where the IQ test is useless. In some ways, this is a relief to know. However, it reinforces why he is so frustrated and overwhelmed with life.  Lots of work to still do here with my oldest. I am hopeful that we are on the right path now.

Goldilocks (12) ~ Where to begin...Goldilocks continues to struggle with behavior. She is always creating chaos but complains to anyone that will listen about how her family isn't calm enough and that she hates chaos. When she is in respite care, however, our home is amazingly quiet and calm. Some of the experts think she is exhibiting RAD behaviors (which she has a diagnosis of) and others think her PTSD is being triggered by having to live with her birth brother Tom Sawyer (children who were abused in their birth home and then adopted together often have lots of sibling adoption issues). An additional possibility is that she is showing signs of borderline personality disorder, which her psychologist thinks might be true. Her birth mother has this diagnosis. People with borderline are easily bored and crave chaos/excitement and will create it if it is not present. No matter what is causing her issues, it is very hard to live with at times. We are having a terrible time finding a therapist who we can afford and is also the right fit. Mental health services in the state of North Carolina are very poor. The special needs family support network in our area has given me some places to contact to try to find some funding. I have found some horseback riding psychotherapy in the area which I think would be a good fit, but it is $100 an hour. When you are talking about $100 an hour, funding quickly becomes a major issue. She is still receiving neurofeedback, which is supposed to be calming and improve her processing. However, the doctor doing neurofeedback says it will take YEARS to see improvement. I am not sure I will continue this if I find a good therapist that our insurance takes. We will only be covered for one or the other.

This is a very typical pose of Goldilocks.
I am at a loss as to why she curls her hands this way.
Has anyone ever seen this or know why?

We are waiting for our insurance to catch up with the recent change in pediatricians. Once that goes through, Goldilocks will be having an echocardiogram to begin figuring out if she has Marfan Syndrome. This diagnosis will help us know whether or not the dizzy spells are something to be concerned about.

On a very light note ~ She is ready to start round two of braces and will also need the penguin to help expand her jaw line.

Tom Sawyer (11) ~ Tom Sawyer seems to be making a vast improvement in tolerating foods that he hasn't been able to eat in several years. Lately, he seems to be able to eat organic, unbromated wheat flour if he is given GlutenEase (made by Enzymedica) a supplement. He still reacts to barley. Many of the wheat flours in the store include barley with them, so he can't eat wheat products prepared by stores or restaurants. He does experience stomachaches if he eats wheat without GlutenEase, so we still may need to look into Celiac Disease. His doctor who follows his allergies suggested that he should be tested but didn't want him to go back on gluten to find out. However, I think it would be worth knowing if the tests are not too dangerous or invasive. He does not want to remain gluten/grain free for life if his digestive system could be cured. He continues to take l-glutamine, vitamin C, PB8 probiotics and digestive enzyme supplements to promote digestive health. To our relief, he seems to be handling all food better with less hives, redness, skin issues and behavior issues. He still looks very pale most of the time and complains about exhaustion. I am interested to see what our new pediatrician thinks about his food issues. He seems to be filled with fresh views on what might be going on with the kids.

The dentist is sending Tom Sawyer for an orthodontist evaluation. We knew this was coming for a long time. His teeth are crowded and his chin is starting to recede (just like his biological sister). He has always had very thin and deformed enamel on his teeth which increases the chance of infection and complications. He has already had dental surgery for a growth in his mouth a few years ago. We are concerned about how to keep him healthy through this process. Fortunately, our orthodontist has done a great job with Goldilocks and says he has lots of ways to help Tom Sawyer with his sensory issues.

Tom Sawyer, who has mild cerebral palsy, is nearly finished with physical therapy at this time. While he needs more, our insurance will only cover 16 sessions a year. Consequently, the physical therapist is giving him a list of exercises to do at home so that he can keep making progress (that is, if I can make him do them often enough). He finds physical therapy very painful and it brings him to tears. Still, Tom Sawyer has made amazing progress and can do many things that he could not do at the beginning of this Summer. He can sustain his energy level better and keep up with other children for longer periods of time. I am hoping that the special needs gymnastic class he recently started will help him keep working on his trunk and legs.

We will be looking into an occupational therapy evaluation once PT ends in a couple months. Writing is such a struggle for him. His hands tremor and his whole body tenses with the process. The physical therapist said he is having trouble because his core is so weak and recommended that an occupational therapist could help with fine motor as well as some gross motor. In this way, he can continue getting help for his core while working on the smaller muscles in his hands as well.

Little Red Riding Hood (9) ~ There is really nothing to tell here. She is by far the healthiest and easiest child I have. She struggles a bit with balance when dancing (more than she should after so many years of dance). This is probably because she inherited a mild case of pigeon-toed walking, which would be of little concern if she wasn't interested in dance. We are in a holding pattern to see if the dance studio thinks she should return for a few more sessions of PT. She starts dance classes again next week, so we will see then what the teachers think of her progress over the summer. She has done lots of yoga, standing on her toes, and other balance work to improve her balance.

Well, there is an update.

Blessings, Dawn

Week 34 ~ Broken Computer, Doctors and Bed School

This was not one of our stellar weeks. Some weeks we just put one foot in front of the other and do the best we can. We started the week off with many flooded streets around town caused by the massive rainfall over the weekend. It was a bit hard to get around town. By Tuesday, kids started getting sick and developed symptoms that seemed to indicated strep throat and a stomach virus. However, they tested negative for strep, and the doctor thinks they have a cold that mocks strep which is going around. Tom Sawyer and Little Red Riding Hood have spent much of the week in bed doing "bed school". Then on Wednesday the computer decided to get sick, too! Poor Goldilocks had to give up on computer school since our only remaining computer is a vintage little notebook and can't support Time4Learning. I am really impressed that the little notebook is letting me get this post up!

Collage Pictures ~ Sensory play gone wild with shaving cream, Turkey Pot Pie, Dear Husband working on our computer, homemade honey cinnamon cough drops.

Books We Read ~ 

• Finished Little Town on the Prairie
• My Great-Grandmother's Gourd
• Immigration Kids Discover
• Boundless Grace
• Abuela's Weave
• Several Garfield books
• Nancy Drew books 

Movies We Watched ~ We watched a 4 hour documentary called Destination America this week. It was very interesting and looked at immigration to America from the 1700's to present day. The kids also watched some PBS kids and PBS cooking shows.

Tom Sawyer ~ Tom Sawyer (11) had a physical therapy evaluation last week and the results are back. I took him in for an evaluation because he still can't ride a bike and complains about pain in his upper back much of the time. She found that his core and hips are very weak. The therapist was surprised he was able to sit up and walk as well as he can. I felt bad that I hadn't taken him in sooner. I just had no idea that all of these little symptoms were indicators of poor core issues! When he was a baby and toddler, he had physical therapy every week. However, that PT said he didn't need any more help, so he has gone for years without any physical therapy.  Here are his symptoms, in case you have a child who needs to be checked out.

• Lots of pain in the neck and shoulders (you know, doctors call these "growing pains")
• Poor writing or hand control
• Mild to moderate balance issues
• Poor posture while sitting
• Leaning on arms for support while sitting
• Low energy
• Trouble keeping up with other kids
• Appears lazy about doing chores that require lifting or lots of walking back and forth
• Gets very cold in water ~ such as at the pool or at the end of bath time

He starts physical therapy in two weeks. Until then we have a few Superman exercises to do. We will not be signing him up for swimming lessons this year. I explained to the therapist that he had needed rescuing multiple times by lifeguards during lessons in the past few years. Because he was always so cold and blue when they got him out, I had him checked for cardiac issues. She said that was also symptoms of core issues!! I am so glad we are finally getting him help.

Goldilocks ~ Goldilocks has been pretty strong this week. When her siblings are down and the schedule is different, Goldilocks tends to have more issues. She is bummed that the computer is down. She really prefers being educated by the computer, rather than schooling with me. She is also nervous about round two of braces. The orthodontist is trying to figure out why one tooth won't come in and whether she will need surgery to get it in position to come through. She had special x rays this week. The dentist and orthodontist are deciding what to do next. While they were in her mouth, they found an abscess in another area. Now she needs to swish her mouth out with salt water or hydrogen peroxide three times a day and see if it clears up.

Next Week ~ We are praying that everyone feels better in the next 24 hours. Next week is my husband's vacation, but we can't go away overnight. The kids have technical rehearsals almost every night. They will be performing in Swan Lake in a matter of days. Since our nights are so busy next week, we plan on doing a few day trips or special outings in the area. My husband is also hoping to do lots of yard work. We have just two more weeks to this school year. I'll be posting our summer plans soon. We will be continuing with lessons instead of a summer break. However, there is some extra special fun planned in between playing catch up.

I am joining Homegrown Learners.

Blessings, Dawn

Happy Birthday, Goldilocks!

Wow!  Goldilocks turned 11 years old today.  The years just fly by!  She requested a horse themed party this year.  We had eight kids at the party, including her younger brother and sister.  We had a relay race of carrying sugar cubes on a spoon, pinning the body part on the horse (hooves, eye, tail, ears) and the Cobweb Game.
 

The kids had more trouble with the sugar cube relay than I thought they would.  They really struggled to keep their hands balanced, so sugar cubes kept falling. Not to worry; I had extras.

It was interesting to see how the kids figured out where the body parts went.  Some felt around and had memorized where the other parts had been pinned.  I was impressed with the child who found the right place for the saddle.  I probably should have kept them all blindfolded, so no one could see where the previous children had put the parts!  Usually, my Mother gets roped into drawing the skeleton, castle, etc., for the pin on game, but my dh volunteered to do it this time.  He did such a good job that we may just let him keep doing the drawings for future parties (or so my Mom says)!


My kids really wanted to play the Cobweb Game that was a popular Christmas game in the 1870's.  Basically, you criss-cross thread around a room, using a different color for each child who will play.  Then you place toys and candy on the strings.  To play, the kids wrap up their string as they walk along and get their toys along the way.  Since other threads cross theirs, they have to be patient about getting past the other strings.  It was my first time creating this, which took about an hour before the party started.  My Mom helped and we got a bit goofy in the process of setting this up with eight different colors of crochet thread.  Mom got stuck in the far corner and had to commando crawl underneath the web. LOL  Setting it up was harder than you might think --  especially remembering whose string you had already put toys on.  We got cross-eyed trying to follow the strings to be sure everyone had a horse figurine, noisemaker, candy cane, etc.  Below are the pictures of the room all set up.

This is the entrance to the room where each child gets a roll of thread to re-wind the string.

My youngest daughter was kind enough to give up use of her room for a few hours, as I needed a place that was out of the main entertainment area.

We used clothespins to attach the toys.

The kids had a blast doing this activity!  They worked well together and moved slowly through the room.  There were a few times that one or another got stuck, but we were able to crawl around and help them out.  I wouldn't advise this for children any younger than 6, and I wouldn't want to do it with any more than the eight kids we had.
 

Our parakeet (in the cage) enjoyed the activity going on around her.

Each child got a bucket to put their treasures into.

 

We finished up with cake and present opening.

Happy Birthday, Goldilocks!  You are making so much progress.  This year you have made a few friends, learned to read much better, and fallen in love with dance.  You can spend hours on the trampoline and still have energy to go on a long walk.  You are writing so many cute short stories.  You love your sister and brothers.  You are always dancing, running, jumping and spinning.  You love clothes and would change your clothes five times a day if I would let you.  You think Princess Kate is the luckiest woman in the world, because she has to change her clothes so many times a day.  Here is a list of 11 ways to  describe you!

1. Curious
2. Enthusiastic
3. Helpful
4. Outgoing
5. Talkative
6. Energetic
7. Good cleaner
8. Eager to please
9. Happy
10. Giggly
11. Inquisitive

Update ~ This is for me to remember ... Goldilocks, who has FASD and Reactive Attachment Disorder, still suffers with impulse control issues and decision making.  Scissors have been a real challenge the last few weeks.  She almost cut the lining out of her winter coat because something was caught in it.  She has cut up all of her winter tights in an attempt to make them footless.  However, the cuts are so high and uneven that they can not be used.  My girl is always busy and always into something (usually something that needs supervision and guidance).  She still asks me often to make choices for her because making choices is too hard for her.  However, if I make the choice, then I am blamed later.  She is my best housecleaner and with careful guidance and training can make a meal, use the stove, unload the dishwasher, clean a bathroom, wash windows, and do a load of laundry through completion.  Organizing is still a real challenge and maintaining her room is impossible.  She is easily overwhelmed by her belongings and still struggles with how to entertain herself.  She is most successful in playing active games, coloring and doing very easy craft projects.  She is making strides toward obedience.  Goldilocks had vision therapy, speech therapy and neurofeedback treatments in 2011.  I have not seen any improvement in speech and may drop that for her soon.  She also took modern dance classes for the first half of the year and jazz dance for the second.  This year she performed in Beauty and the Beast and The Nutcracker and the Mouse King.
Blessings,
Dawn