NT or Bust?

GB can pass for neuro-typical in some settings, some of the time. As she gets older, there are less settings in which she appears NT, for shorter periods of time. Early Intervention was/is  a lot of the reason GB doesn't constantly stand out as different. I have always considered EI a blessing. I have also always considered being NT the goal. It was my goal for J, MK, and D. It was my goal for GB. It is not my goal for GB any more. I was wrong.

I want GB to be happy. Happiness begins inside. If large parts of her daily existence are focused on changing who she is, she has to feel like what she is isn't good enough. If left to her own devices, GB will wander around singing songs aloud. When she tries to engage other children in play, she uses a movie or a TV show that she has seen- not just as a starting point, but as a script she is unable to deviate from.


GB is most happy when dancing around, singing, or performing a snippet of something she has seen. She has other talents that she is proud of, such as gymnastics and baking, but they are hard for her. They are work. When she was 5 and 6, I liked everything she was doing as long as she wasn't melting down. GB knew it and drew confidence from that knowledge.

GB has lost that confidence and I think, in a large part, I am responsible. In the beginning of the week, GB had a doctor appointment to discuss the rapidly approach of puberty. I was approaching it from the viewpoint of keeping the information developmentally appropriate for GB. GB is almost 9, but functions more like a 6 year old. The doctor laughed and told me not to worry about it because she was sure I would have GB caught up soon.

I have been thinking all week about what the doctor said. Somewhere in the last year, I stopped enjoying GB as she is and started focusing on the future. It is a delicate balance, almost a dance, enjoying who she is today and equipping  her for her future. I haven't done a good job keeping that balance lately. I will be mindful of my real goals for GB.

GB is a beautiful person and I would hate to lose that.

This morning's conclusion

• My 29 year old son called yesterday. He was manic and made little sense.
• Hope had a bad day in school, but came home and had a good a good afternoon and evening. 
• GB came off the bus with her lip bleeding. It bled through paper towels, tissues, and a face cloth with ice. By the time it stopped, GB was  on another planet dysregulated... nasty, throwing things, paranoid.
• GB self-regulated by putting her weighted vest on, going to her room and listening to her ipod. When she was regulated, she came down and give individual apologies to each person she had been nasty to, including Hope.
• After she was regulated, GB managed to do her homework without any intervention.
• Hope had a hard morning today... she wouldn't dress until I told her I was driving them to school today and if she wanted to go in her birthday suit, I was okay with that. She didn't know what a birthday suit was, but after I explained she got dressed quickly.
• This morning's conclusion: The most important thing you can teach your child is how to manage their disabilities/mental illness. I wish I had known that when J was growing up.

GB's Night

GB's gymnastic class put  on a special performance. They did a floor routine created by the dance instructor and a bar routine created by the gymnastic instructor. She wore the new biketard she received for Christmas. MK and the baby came and her grandparents were also there. Everybody was very impressed. GB was in the right spot, focused, and showed off her skills, despite a nervous tummy. Afterwards, we all went to the Chinese buffet for dinner. Hope tried to take the attention away from GB, but The Dad stayed on top of it and made sure GB got to shine.


I am proud of how hard GB works to master new skills!

Go Figure...

I hate to start a post with the obvious- but today it is the only way to start. In general, children with special needs do not outgrow them. I have great hope (pun intended) that my RADlet will be able to overcome and compensate for her trauma based start on life. Even if she does, though, it will always be a part of her. GB is Bipolar, FASD, and Autistic, with 5 months of early trauma thrown in. It is part of who she. Her coping skills have improved and will continue to improve. It will not change the way her brain works, the way she learns things, or heal the physically damaged parts of her brain.

Seems obvious. So I am wondering why I received an email today from Mrs. Very Stupid Chairperson today, saying that since GB was doing so well, I might want to consider mainstreaming her again. She isn't even our chairperson any more. I thought about all the-rooted-in-reality facts I could give her. Then I realized, since she is not our chairperson anymore, I don't owe her any explanations. I emailed her back one word. "No".

That ended that. I am still left here wondering how many other people in our society thinks that, with help, GB will be NT or "normal". Meeting with the CSE tomorrow. How many  of those people have the same misconception?

Two Traumatized Kids

Traumatized child # 1 is making progress. Although we have not had a repeat, yet, of Monday's most excellent day, we are seeing fleeting moments of real joy on her face. The picture above was taken yesterday while she was swimming with GB. Genuine joy has been unheard of for Hope. On the down side, her latest, and constant, role is the Victim. This is not good. It isn't good for GB. It also is part of my baggage. Growing up, I was the oldest and my youngest brother was the Victim his whole life. It is a big trigger for me and I need to be really careful how I deal with it.

Traumatized child # 2 is having a very difficult time. When Hope plays victim, she casts GB in the role of aggressor. GB is defenseless. The shrink again repeated that I am not protecting GB well enough and GB is starting to show signs of PTSD. Recently, Hope bit her own arm, starting crying that GB hurt her, and GB was unable to defend herself. Fortunately, I saw Hope bite herself (and the bite mark was facing the wrong way), but  it took way too long to get GB back and calm her down enough that she could process this. And of course, at that point she was pissed. Still trying to brain storm possible solutions.

The girls are getting better at reciprocal play. It happens more often these days and lasts longer. A work in progress.

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.

Jealousy

GB was diagnosed with autism almost six months ago. If I close my eyes, I can still feel the wash of lightening  through all the nerves in my body, followed by  them shutting down, leaving me with only the psychologist's voice. Her voice faded into the background and I could no longer make out her words. My heart said NO! She doesn't need any more difficulties to make her life harder. My head said Oh! That explains a lot.

The Dad is coming to a place   of  acceptance. In the fall, he wanted to sign up GB for NT soccer. I said absolutely not  and because I provide the transportation, I  had final say. At Challengers (Little League for Special Needs) last Sunday, The Dad thoroughly enjoyed watching GB be happy, content, and actually play softball.

I wish I could say I have found some acceptance in the last months. I am thrilled she is enjoying softball, happy at school, and making slow, but steady progress in learning new skills. So, what's my problem? Better yet, why do I have a problem? I have a problem because I am jealous.

I have a couple of close friends with all NT kids, close in age to my girls. I am jealous of how easy it is for them to take their girls and just do things. I want to be able to do all most of the spontaneous things they do. One of my friends called this morning at 7:30 (first off, I never can take phone calls while getting them out to school- it is hard enough when I give it 100% of my attention) and left a message that they were taking their kids and checking into a local motel for a night of swimming and movies. It sounds great- except Hope only functions at home, GB can only handle an hour or so with the big group inside, and they are both asleep before eight o'clock. I totally get how a break from routine refreshes people. I just can't navigate this one. And yeah, I am jealous. I am jealous that they can go to a movie without having to watch the movie first and consider the triggers in the movie and if their kids can handle them. Their kids don't have triggers.  We go out to eat and they look at a menu and talk about what they feel like eating. I have to help my girls pick out food that won't lead to a melt down or a manic. GB is pretty good. She knows what she likes and she knows what she has to avoid. As long as I am watching, she will avoid it. Hope is difficult. After eight months, Hope is still unable to choose food from a menu that she likes. Before I wised up, Hope picked macaroni and cheese three times straight. Each time the macaroni and cheese showed up, Hope melted down. What did she want to order the fourth time? Macaroni and cheese of course. The meltdown came early, when I told her see couldn't order it.

Hope is repeating kindergarten in September. It is a good decision for her. Between all that she has gone through in the past year and  where she started, I never really expected her to pass kindergarten this year. But when conversations with my friends start with how unreasonable the amount of homework their kids have is, I am jealous. They have not had to go to school at all this year to make sure a problem gets solved.

My friends NT kids can play outside in the yard without somebody sitting there and watching them. They can put in a DVD on a rainy day and their kids watch it all the way through. I am jealous of the quiet and the time to themselves they get from a DVD. My girls won't watch a DVD all the way through even when a captive audience on a car trip.

My friends are always helpful when I have a child melting down. I am jealous because that child is never theirs. It is always mine. They are very flexible and understanding when I have to change plans at the last minute. I am jealous because I am never the one who gets to be flexible and understanding. I am always the one that changes the plans.

A lot of what I feel can be considered grief. I grieve the things that will never be easy for my kids and the experiences that they are not having because, right now, they can't handle them. The jealousy I feel is real, too. It  has nothing to do with the girls. I want to be able to just do things. I want to let things ride and be able to assume everything will work out, have a cup of tea and know without looking that the girls are fine for that ten minutes, or send a note to a teacher to take care of a problem. It is certainly about wanting things to be easier, being tired, and wanting to fit in. I have no doubt that these jealous feelings are rooted in selfishness and that I would be a better person without them. I try not to let them get too tight a hold of me. So far, though, I am unable to get rid of them.

Each morning, when I wake up, I check inside me, looking for that place of acceptance and the peace I am sure will come with it. So far, it hasn't been there. So jealousy remains an uncomfortable inhabitant of my body, mind, and soul. I believe I am a work in progress, but God and I have a long way to go.

Only in the World of Special Ed

About a month ago, during GB's Annual Review, the school district denied her door to door busing. I consulted a lawyer, and filed my written protest to both the Director of Special Education and the school board. Having heard nothing back, I filed a notice last week with the school district informing them I was going to the state because they were denying my child a FAPE. Mrs. Very Stupid Chairperson said "Do what you have to do".

On Friday, we had the bus incident with GB and the aide. Yesterday, I spoke with the principal of the school, left the Director of Special Education a handwritten note, ignored Mrs. Very Stupid Chairperson, wrote a letter to the school board,  and mailed  it (signed, returned receipt required).

This morning, bright and early, the Director of Special Education called. GB starts door to transportation as soon as Friday's incident is settled. I asked her directly what changed. She told me that she was all about negotiation and compromise. I pointed out to her she was giving me exactly what I asked for. She said that law suits were expensive and unnecessary.

I hope she still feels that way when she gets my request to add two more individual speech sessions to Hope's IEP.

Sunny Sunday

GB and her Buddy Abbie!

GB joined Challengers softball this spring. Today was her first game. Her buddy is a teenage girl named Abbie. They hit it off right away and Abbie will be GB's buddy for the season. She had never tried softball before, but was able to throw and catch and didn't need a batting tee to hit. Most important, she beamed from the minute she met Abbie right through the game. And it only cost $15.00 for the season. I met another mother who is suing my school district. I may have found a new IRL friend.