Next Wednesday

I am already dreading next Wednesday and today is only Friday. Wednesday is the day we trek into Children's Hospital Boston for Sarah's biannual appointments with her orthopedic surgeon and her physiatrist. Basically, they both evaluate her hips, spine, hamstrings and feet. All kinds of scenarios go through my brain...from 'all is well, see you in 6 months' to 'she needs surgery on her ________ ASAP' (fill in the blank). It's a long day for us with lots of bending, twisting and stretching done to Sarah by the doctors. It is uncomfortable for her, for sure.
We also always discuss her progressive dystonia and her schooling. The physiatrist looks at the whole child, not just the bones and muscles, and how she is learning, her theraputic riding, her overall health, her equipment and her communication. Lots of talk. Sarah sits and waits. And listens.
I do not believe there will be xrays this time, of which I am very thankful. That is quite an undertaking. But you can be sure we will be talking about those @#%@* hamstrings again. They are the death of me. Botox/phenol injections are now off the table. They have maintained her hamstrings to a reasonable length since her surgery at the age of 6. We can't do them any more because with any sedation/anesthesia she gets ileus(the GI system shuts down...vomiting, constipation, no food/fluid intake possible) so she has to be admitted to the hospital for a few days for IV fluids, of which she only has ONE good IV site to use.
So there's the problem. Anesthesia=ileus=emergency admission to the hospital=practically no IV accesss for fluids etc. Not good. So if those hamstrings are really tight we might as well do another surgical lengthening(a more permanent solution)and just admit her before the surgery and plan on being there for a while. Yuk. I am not sure what they will want to do about the lack of IV access. One IV site will never make it through an entire bout of ileus.

So I am bracing myself for whatever is to come. These appointments are always stressful. For both of us.

Here's a picture of my funny girl laughing at my feet(and myself) under the clear plastic tray on her stander. She always makes me smile.

Humming along

Sarah is doing well. She has gone nowhere these past 9 days. (I am sure it is a record). Partly because I have eliminated her having to participate on my errand runs and partly because it was too cold for riding this week and her OT was sick so we did not go to OT. So there. She has been home and very happy all week. At least she has my sister for a new face when I work. She loves her Aunt Ali.
I guess with all the sicknesses going around it's just as well she is home. She is practicing with the theratrek and getting the hang of it. We are doing schoolwork. I can't wait for warmer weather.

Stellan

Here is a little boy who could use some prayers. He is very sick with cardiac issues. This is his story. He is back in the hospital as of yesterday and things are rough. Here is this morning's update.

Lower Case Letters

Sarah reads using only CAPITAL LETTERS. But she needs to learn the lower case letters as well. These are harder for her as they are so similar to each other in shape. I always teach her the sounds of the letters, not the names. The names come later and are not as critical to reading.

In this clip she is being tested on quite a few of the lower case letters. I started teaching her them about a month ago and we should be finished with all 26 in the next couple of weeks. She only gets one wrong here.

We usually sit and work on them only once a week because any more often than that and she gets bored with it. Fortunately, she has a great memory.

Yes? or No?

Here is Sarah answering yes or no with flashcards. I am trying to figure out what, exactly, she wants to do. She's in her pajamas and it is just about her bedtime, but, apparently she has other ideas.

Fabulous Friday

This is Sarah entering the kitchen. She is working hard but she is walking.

No picture yet

The Theratrek arrived yesterday. It took me a while to eyeball it and set it up to fit her exactly. I did pretty well because when I put her in it, there was nothing left for me to do but watch her take steps. She was VERY quiet as we moved along the hallway. She was anxious to look in each doorway as she approached one, craning her neck around each corner....very cute. It's been years since she walked so this was interesting for us.
Today I will try to get a pic or two as she gets more confident.

A little fun

You Are Sudoku

You are simple, modern and elegant. You're not that difficult to figure out, but very few people truly get you. You approach the world with a pure logic that most people will never grasp.

What Kind of Puzzle Are You?

Where do I begin

So, it has been quite a week! First of all, John was home, so that was great. He would not let me take any pictures of him, so this was the best I could do. He is in the process of covering his face:) He took it easy, did a little studying and helped me with Sarah. I got him a new retainer and a haircut. We did address changes for his license and checks. We did lots of takeout! Mia followed him everywhere. She is now exhausted and sleeping the days away.

Next, we have a squirrel in the attic! Yuk. It comes in early morning thru the attic vent on the side of the house. It is noisy. So... that is being taken care of in the next few days. Ewwww. It hangs out right over my bedroom in the corner ceiling. It is very busy. Right now it is late afternoon, so it is out running around, but it will be back.




And finally, Miss Sarah. She is much happier staying home for now. No tantrums. No fits :) I even took her to OT the other day and not a peep out of her. Good as gold.
So I think we are on the right path.

And I must mention the Theratrek. It is a gait trainer, kind of a seat with wheels. Only you don't actually sit ON the seat, more that you lean against it and stand on your feet. And when you take steps it rolls in that direction. Anyhoo, I finally found one for Sarah through Craig's List. It is being shipped cross-country this week. It is the only type of gait trainer that works for Sarah. The others provide too much support for her, so she flops all over them and looks terrible. This one makes her hold most of herself up by herself--from the hips up she has nothing to lean on. They don't make the theratrek anymore so I had to find a used one that someone was willing to sell.
She used one a few years ago in therapy and it was great. Until now, I haven't been able to find one just for her. I am praying she will still be strong enough to use it.

Sweet Saturday

The Plan

Yesterday I met with the teaching consultant I have for Sarah. She has been with us since Sarah was four years old. At the age of 4 Sarah learned the same way a child with autism did and this teacher (Mrs. A) is an autism specialist. Anyhoo, over the years, Sarah's learning style became more typical of the average child, less and less of the autistic style. However, she still has autistic features in some of her mannerisms and sensitivities. She was never given the diagnosis of autism. She didn't totally 'fit'. It is with these remaining issues that Mrs. A shines. So, I presented her with Sarah's latest difficulties. Her trouble with going places and transitioning. Her confusion. All these new developments that are hard for me to make sense of.

The conclusion is that Sarah has had a cognitive 'gain' which is obvious in her academic work and her awareness of what's going on around her. She also now suddenly has more of a sense of who she is and what she wants. All this new 'knowledge' is a bit overwhelming for her and she is having trouble handling it. This presents as outbursts, reluctance to leave the house and irritability.

So the big plan is....let her regroup. Back off on most outside activities. Try a bit here and there but just let her be. Let some time go by. Present fun activities in the house. Interrupt the pattern. Allow her to relax and get her bearings. Do not push her. She is communicating to us that she needs a break. She has to process all her new information.

Sarah has needed breaks before when she was younger. At the age of two I pulled her out of all therapies, early intervention, schooling--against everyone's advice. She was too defensive, too fearful, too closed up. She felt bombarded by other's expectations. I was losing her inside herself. For the next two years I had her stay home with me. We did errands, took stroller rides, she ate and slept. She relaxed. She became more interactive on her time. Not the school's time, not the therapists' time, not any teacher's time. On her time. She slowly peeked out of her protective shell.

Mrs. A entered our lives at that point, when Sarah was four. I had approached the school system to see what they had to offer Sarah and if I would even be interested in it. They offered Mrs. A and we were on our way. Sarah has always been schooled at home. It works best for her. Quiet, organized, predictable and her bed is always available for naps! With Mrs. A's guidance Sarah has been allowed to learn at her pace, learned to cope at her own pace. It has been a gentle and stable schooling for Sarah. 'Behaviors' have been few and far between as Sarah's education and daily life has always been designed just for her.

So you can imagine, I was eager to talk to Mrs. A and find a solution to Sarah's frustration, irritability. As usual, she nailed it right on the head. It makes perfect sense. I am to back off on the outings. Let her relax, process her new level of understanding and in a month or two try a couple of outings and see how she responds. As Mrs. A explains, "Sarah sometimes requires a break and when she is ready she will move forward, be comfortable on the next level and shine. We have to allow her the time".

So the bottom line is I now have to order my groceries from Peapod for home delivery from stop and shop. No more grocery shopping for us :)

Music to my ears

The music is Playstation. Sounds of video games coming from the room down at the end of the hall. John's room. That room has been silent for 2 months. Silent and dark. Empty. Everytime I walked by that room I would divert my eyes so as not to look in and feel the emptiness. Of no John. Sniff.

But tonight it is all lit up! Two lights on! The TV is on. Playstation battles are waging. Mia is curled up next to the TV staring lovingly at her most favorite person in this world. Her John. Every once in a while I wander down the hall, plop myself on his bed and chat with him. And then I get up and do some mundane thing that needs to be done in the house and eventually meander back to his room. And chat some more. It's kinda like christmas, when you can't believe you got such a great gift. And you have to keep going back to look at it. To be sure it's real.

John will be home for a week. It's his spring break. We are all so happy to have him home. I think I'll go hang out in his room for just a little bit more :)

Here comes Sarah!

Oh boy. Sarah is really coming to life. She is becoming quite opinionated and vocal. As she does not speak, her opinions come out as shrieks. What fun!!!!! It's like the final veil that has been draped over her face has lifted off and she now knows all. Or at least she thinks she does! And she is going to tell me about it. Whether I like it or not.
I haven't decided on my course of action, but there has to be one or I won't be able to take her anywhere. She gets annoyed and irritable and things better go her way or the highway. If I wasn't dealing with a 70 pound child crying and thrashing in the middle of a store while sliding herself OUT of the wheelchair and onto the floor, it would be something to rejoice about. Sarah cares enough to communicate! Woohoo! OMG.

Yesterday, in the middle of the grocery store, she decided to carry on and on, crying and being irritable. I asked her by flashcards if she wanted to be IN the store and she answered 'yes' but would not stop the behavior. So, I proceeded to matter-of-factly wheel her out of the store and she became furious. A full blown tantrum all the way across the parking lot. I plonked her in the car and sternly told her this behavior was not going to fly. Boy, was she mad! Tears, red face, gasping for breath, the works. The drama! Sarah has met her match in me as I have never had any trouble disciplining my children. They learned who was the boss very quickly.

However, with Sarah, it's a fine line. I want her to express her desires, needs, preferences. I want her to care enough to make the effort. I don't want to shut her down, make her crawl back under that veil that she has now finally emerged from. It is a good thing. But she is going overboard right now. The pendulum has swung too far the other way. I guess that is to be expected. She is practicing a new skill. Maybe in time it will settle down. But in the meantime...uggh.

So I am going to give this some thought and come up with a fabulous, marvelous, ingenious, effective plan so that Sarah and I can live peacefully in the same house.

Ha!!

A Great Find

Sarah loves to watch DVDs on TV. She is much more interested in this than watching any software on the computer. Our TV screen is large and I can pull her right up to it (for her visual issues).I have had difficulty finding anything educational in DVD format that keeps her attention. She needs music interspersed throughout. She loves sing-a-longs and The Wizard of Oz and the Sound of Music.
But this week I found a site on the internet that lets you preview a part of each DVD to see if you think it will be appropriate for your child. Woohoo! No wasted money 'guessing'. I found 4 dvds that are perfect! She is mezmorized. She watched the first one straight through(45 minutes) without a complaint. Usually she can only watch a small part of a 'new' DVD because she has to get used to it. That can take a month or so for her to feel comfortable watching the whole thing. Not with these! She is smiling, rocking in her chair and studying the words on the screen. Lots of words, colors, shapes, numbers, etc. All with music. Perfect.
It's fine for me to teach her reading etc., but it's much more fun to learn this way too.

Here is the site: www.rocknlearn.com