A Word From Our Sponsor…

I haven’t posted in a while. I have been writing. I have not been sharing what I write. I have been contemplating why I share my writing here. After taking a break, I have found an answer that I am willing to sit with for now. I write because it helps me clarify my thoughts. I share because I do not want to be alone.

To sponsor something is  to support an event, activity, person, or organization financially or through the provision of products or services. My writing is my product . I am supporting my sanity. It sounds overly dramatic. Living in a place/space where the word “normal” has no meaning makes it easy to lose sight of the road you travel on. We are in the middle of change. The girls have each faced their own challenges… challenges made more difficult because change in its self is difficult for them.

 

GB is in a new class. The old class wasn’t working and was beyond what I could fix. Even though there was only eight students sharing the teacher and the two aides, the teacher was unwilling to have her working at her speed. While I was trying to determine why this class was no longer working for GB, I found out that in the two and a half years GB was there, the end of the year reading scores were not data based. It was the teacher’s best guess. Since GB’s IEP was based on this information, her IEP did not satisfy legal requirements. The school is anxious to meet GB’s needs anyway they can. I have not yet figured out what I want them to do. The class GB is currently in is larger, with thirteen other students. On the plus side, four of the students are girls and GB is developing a nice friendship with one of them. Her anxiety level is subsiding. Most days she is relaxed and happy. The downside of this class is its academic level. None of the students are close to functioning on grade level. Right now, GB needs what this class has to offer socially and emotionally. It is not a long term solution. I plan on leaving her there for the rest of the school year, so I have time to look for something more permanent.

Hope has not had a good month. She has taken the physically aggressive rages into the school. She bit one of the classroom aides. The spike in unacceptable behavior was accompanied by Hope feeling sad for the first time. This is a huge development. Hope has a new therapist. Besides working with Hope, she is helping us develop a treatment plan. She also insisted on us defining where the line was that would put Hope in an RTC. She reasoned that by defining it a head of time we would avoid making a rushed decision in a crisis. Hope’s treatment plan is still being constructed. We are working to keep everyone safe while Hope tries to deal with her very difficult feelings.

There is a lot more to share, but there is time. Nothing needs to be rushed. I wanted to end on a good note, so I am closing with this picture: GB’s favorite activity in her new class is learning to play the recorder. “Hot Cross Buns” never sounded so good.

GB practicing the recorder.

GB practicing the recorder.

 

 

 

Not a Tween

GBandKyra

When they were younger

GB has been friends with a neurotypical girl since they were three. They went to nursery school together, took swim lessons together, attended the same gymnastic class. They loved dress-up and dancing. They took hip hop and went roller skating. Our families took day trips to water parks, overnight trips to Six Flags. The girls went to Sesame Street Live, Disney on Ice and a Selena Gomez concert together. There were barbeques, parties, and high tea. Our families grew so close that we went on a cruise together last summer and swam with the dolphins. We go to dinner with them most weeks.

Over the years, the girls progressed from coloring sheets we brought to entertain them, through dolls, craft projects, singing Kidz Bop, to Double This, Double That and Mary Mack. Both girls will be ten in less then two months. Double digits at last. Nothing stays the same, but sometimes you don’t notice the little changes as they happen. When you do notice them, it is all at once and the glare can catch you by surprise as it momentarily blinds you.

At dinner last night, it caught up with me. GB’s BFF was a Tween and GB was painfully left behind. BFF received a Kindle Fire for Christmas. She kept to herself, absorbed in the wonders of the internet. GB had made them bracelets and  BFF refused to take it. GB tried to connect with her and couldn’t. She was sure she had done something wrong and tried to make it right. It hurt to watch. Eventually, I brought GB by me and just held her.

On the way home, I cried silently. GB is unable to be a tween. With her developmental delays, it won’t be happening anytime soon. Like most mothers, when she hurts, I hurt.

Laying in bed together, GB asked me what awful thing she had done to make BFF not like her anymore. I told her she had not done anything awful, but was unable to explain what happened so that GB understood it. I can’t change it. I can’t take the hurt away.

Friday nights at Friendly’s was an enjoyable era that may be coming to a close.

Back to School

girls

Today was the girls’ first day back to school after winter break. GB started her new class in her new school. They take different buses, but leave and arrive within a couple of minutes of each other. After they were safely on the bus, I began to worry- serious worry that consumed my mind and left no room for everything else.

It is hard to send any child into a new school situation in the middle of the year. It is even harder when that child has disabilities that make communication difficult for them. My primary goal is that she feel competent at school and finds joy on occasion. I still want her to learn as much as she is capable of learning. I do not want to put limits on the future of a child who hasn’t turned 10 yet.

GB came home with a smile, one page of homework, and lots of things to share. Day 1 went well. Hope came of the bus whining and complaining and pure attitude. She struggled through homework and when it was bath time, she lost it. She didn’t come back. The bottom line on Hope is that she still is not safe. Her psychiatrist is suppose to come back this month.The medication she is on does not cut it. We meet with her new therapist Friday. I am hoping she will lead us in a new direction.

My moment of the day: laying in bed with GB, working on a word search puzzle. She is a very visual kid and is good  at them. We enjoy them together and it doesn’t hurt her vocabulary or spelling skills.

Bits

Today did not go as planned. Hope woke up with a 103 degree fever. Mali Joined her with a 102. GB was visiting the class she is going to try in January, which meant she was excited and nervous- not her best combination.

Hope and Mali went to the doctors and are on antibiotics. Both of them did a lot of sleeping today. Hope is feeling so bad, she didn’t even think of tomorrow’s field trip. GB had a good first impression of both the class and the school. She is worried about the cafeteria. I told her if it turned out to be a problem, we would figure something out.

GB had gymnastics today and mastered her round off. She enjoys the gymnastics class so much and is getting a lot of confidence from it.

We are looking at a new configuration of therapy. The County Mental Health program is shutting down and three very good therapists are looking into setting up an integrated practice. Hope would have a therapist just for her, everybody else would work with a different therapist, and a third therapist would work with family dynamics.

We are staying home for the holidays. My sister and family are coming here. Besides skiing and bowling, most of us will probably go to Manhattan. Hope and I will stay home.

I have a program on my Mac called MindNode. I am trying to use it to track goals for the entire family. I also have a scanner and software package called NeatDesk on my wish list. It would be great for tracking the ton of paper work building up. It is pricey though and with The Dad only working halftime and getting half his salary, it may have to remain a wish.

I am meeting my old friend and Pastor, (and Mali’s grandfather) for lunch. Prayers for God’s intercession would be appreciated as well as any good thoughts and positive energy. Life is too short to waste ir.

Change Is Hard

GB had a rough day today. She couldn’t handle school. She was loud. She bounced all over the place. She cried. She hid. Sigh. Change is hard. Why didn’t the school district inform us in September that her placement hadn’t changed, but everything else had? I spent a lot of today reassuring GB she could handle it.

Tonight I am reassuring myself.

My Agenda Going to the CSE Tomorrow

I make it a point to have a written agenda going into a CSE and bring enough copies for everyone. This is what I came up with for GB’s meeting tomorrow.

Agenda for GB’s Program Review, 12/5/12

Hw
She is spending 80 – 90 minutes a night.
She is unable to complete it independently.
Every night, there is something she has not learned yet.

Math
Last year was Touch Math, this year Saxon (Grade 4).
GB can add/subtract with regrouping and round numbers.
GB is very weak in numeracy, patterns, fractions, and is     struggling with concept of multiplication.
On a typical Saxon Hw sheet, GB can only complete 1 or 2 groups     of problems, out of six.
Math is being taught to the class as a whole.
GB scored a low 1 in Math on the state assessment last spring.

Reading/Spelling
GB typically can read between 50% and 75% of the words on the     spelling list.
She is unable to complete the first exercise of each unit.     (analogies,     opposites, definitions)
She is not getting the RTI reading she had last year.
GB scored a low 1 in ELA on the state assessment last spring.

Emotionally
Her anxiety is through the ceiling. She worries about not being able to complete the pattern and losing recess, not being able to complete the Hw and losing recess. The Hw time each night is not allowing her enough “down” time.
Not being allowed to go to the school store because Hw is not completed is not acceptable. My email asking for clarification of this incident went unanswered.

We would like GB to have as normal an experience as she can handle.
For example, typical fourth graders do not need to bring ice cream and school store money in a sealed, labeled envelope. GB is capable of managing this on her own and we would like her to have the opportunity to do so.

Any good thoughts or prayers you can spare would be appreciated.

Grateful

I was spitting tacks when we left for my sister’s last night. The Dad insisted on taking the Prius because the saving in gas is significant. I couldn’t imagine any amount of money worth traveling with Hope in the Prius on a ten or eleven hour ride. My fears were valid. Hope nutted up and The Dad spoke softly and called her his “baby”, while growling at GB to leave her sister alone. I should have just stayed home. My frame of mind was the pits at that point and I couldn’t find the peaceful spot inside that my therapist and I have been working on. So I switched my focus to keeping my mouth shut.  I was successful. I figured I wouldn’t say another word until we were at Lynn’s house.

I was startled by a huge bump and the strangest sounds coming from the car. Three in the morning, three hours from Lynn’s, we hit a deer. The Dad couldn’t open his door and a tremendous amount of steam rose from the engine. GB and Hope woke up, but,  thankfully, no one was hurt. Hope was snarly, which is how she always wakes up. Fortunately, while she raged earlier, she didn’t lose it then. We waited a half hour for a Virginia State Trooper and another half hour for a tow truck. By 4:15 we were in a hotel room.

This room has a complete, full size, set of stainless steel appliances, including a garbage disposal, and granite counter tops. The bedroom is completely separate. There is a kitchen table, a couch, a desk and an easy chair.

This morning we woke up to find we didn’t have comprehensive on the Prius and would have to pay cash to solve this problem. Not great, especially since, the Dad just took a half time leave, and our living money was cut in half.

I am grateful because:

  • Ten years ago, The Dad would have lost it completely. He stayed intact and dealt.
  • GB has always been a good car rider and trusts us completely. Telling her everything was going to be ok and her believing us was big last night.
  • Hope was Hope, but when we hit the deer, she didn’t rage, she just got snarly.
  • God has always met our needs and I trust that he will this time.
  • We will get to my sister’s by Thanksgiving, even if it is not on my schedule.

Most of all, we are all safe and together. Everything else pales beside this.

Wishing you all a Blessed Thanksgiving!