She was having a great day and then she had a seizure. A pretty nasty one that lasted much longer than usual. I was at work and got a call that she was in the nurse's office and pretty much unresponsive. That phone call broke my heart. Can't she have a one day, her birthday, wheee she can just be a kid? I hurried to her school and she was still post ictal. I picked her up and carried her to the car and got her home. She finally woke up for a few minutes then went back to sleep and slept for a few more hours. Then she woke up and it was like nothing had ever happened. She was bouncing off the walls. We had told her we would go out to eat anywhere she wanted to go. She chose McDonners (McDonalds to the rest of us). So we went and she played and she was fine. She has no recollection of what happened or how she even got home. Seizures are so weird. Her party was supposed to be Saturday but the weather is forecasted to be super nasty so we have rescheduled the party for another date. My sweet Anna. She has gone through more in 6 years than most people do in a lifetime and she just keeps on smiling. The world is so much brighter because she is in it.
Tuesday, December 3, 2013
Sunday, November 24, 2013
This man was perhaps the best grandfather in the history of grandfathers. As a child I didn't get to see him as much as I wish I could have been we saw him at least four or five times a year. We lived too far away but my parents did their best to make sure we saw him as often as we could. He loved to tell stories and to laugh. And when he would laugh his cheeks would become a rosy red and he would light up the room. He took me skiing on both snow and water. He owned grocery stores and he let me pretend I worked there. It was back in the day when you used a price gun to place a little white sticker with a price on each item. I always tried to impress him with how fast I could place those stickers. He let my sister and I climb on boxes and we could have more fun in that store than any playground could ever offer. And after the store closed at night while he was counting money and figuring how the day had gone my sister and I would see who could produce the longest cash register receipt tape. I live in a fairly small town and it happens to be the one he had his stores in. I've never found a person in this town who had a bad word to say about him- even those who never knew we were related. What you hear is person after person telling of how he helped them through a dark time and made sure their family didn't go hungry. He went to church on Sundays but more important than that was the way he lived his life every day, Sunday or not. Over the last few years Parkinson's robbed him of so much. It robbed me too of more good times with him. One thing it couldn't take though was the love I had for him. I'm certain he's in heaven now and no longer suffering. And I'm certain that when he arrived there he heard the words,"Well done my faithful servant, welcome home." RIP Pipi. You will be missed. Weldon Thurman Scivally 6/29/32-11/7/13
Saturday, November 23, 2013
We finally had the bid ARD meeting (I think other states maybe call it IEP?) and it went, well, better than I could have ever imagined. I've read so many horror stories about these meetings. I was a bit afraid but went in hoping for the best. And that's what I got. I don't know if it's that we are just amongst great special education people or that my expectations are realistic or maybe a combination of both but I'm just so thankful that this is one thing that doesn't have to be a fight. We went over Anna's speech scores on her latest testing. On this particular test "normal/average" was 10 but anything as low as 8 was acceptable. There were many subtests within the tests and Anna's scores were anywhere from 4-8. Then there was the articulation test and she not surprisingly fell in the 1%.
Their biggest concern is that her scores are the same as they were over a year ago when she was tested. So she will get speech at school for 20 minutes twice a week. That may not sound like much but for Anna it is a lot. Her attention span is like that of a fly. So here's where I'm at now- her articulation is poor. I knew that but putting a test score to it makes it more quantifiable. I am beginning to wonder if we need to look into some sort of augmentative communication device. It's not that I don't think she will improve. I absolutely think she will. But in the mean time she needs to be heard and understood. She said the speech pathologist is using an iPad with her so I don't know if they are already headed in that direction or what they are doing. Then we set classroom goals. They want her to know the entire alphabet and to be able to count to 40. They want her to actually recognize numbers 1-20. I think the goals are quite lofty but worth trying to reach. Anna is making amazing progress. She can now write her name and recognizes about 6 letters. Check out the bottom left of the page in her folder because this little lady wrote her own name.
Monday, October 7, 2013
Sunday, September 15, 2013
We are 3 weeks into the school year AND we are all still alive. Not only are we alive but we are actually doing well minus the driving to 2 different schools on opposite sides of the county twice daily to take and pick up the kids. The schools are 26 minutes apart. They both start at 8. One ends at 3 and the other at 3:30. I don't like it. At all. But I will keep on keeping on because it is the best for the kids who will some day decide which nursing home to put me in. Hopefully they will look back and see my struggles and have mercy on me. Carly is doing exceptionally well (with the re addition of her ADHD meds) and at mid 6 weeks has all As on her progress report. This is a first. I think one of her teachers looks down on the fact that I pulled her out to homeschool her last year but I think the fact that her grades are better than they have ever been says I must have done something right. Yes, she is a bit behind in her multiplication facts BUT when I pulled her out in 3rd grade we had to go back and redo 2nd grade math because it was obvious she had gotten by but had not really learned. So the fact we did almost 2 years work in less than a year makes me ok with the fact that she needs a little more time to memorize her facts. I didn't send her with ADHD meds on the first day and she came home asking me to please restart them. I think most kids resist the meds so the fact that she requested them spoke volumes. I'm glad we went almost a year without them but I'm ok with her being back on them also as long as she clearly needs them. Ideal? No. Reality? Yes. On to Anna. She is still only having about 1 accident a day in panties. It is awesome. The accidents are usually in the evening when she gets tired except there was that one night when I forgot to put her in a Pull Up for bedtime. Oops. She is loving her school too. I had a near breakdown thinking again maybe she wasn't in the right place. It went something like this- I asked her teacher if she thought this was the appropriate placement for Anna. She said if it were her kid she would put her in "regular" kindergarten. So then I freak out thinking I've done the wrong thing, scarred her for life... So I call and talk to the special Ed coop head lady who reminds me that special Ed teachers have difficulty discerning what is "normal/typical" because they are rarely around it. Basically, yes, my kid may be the valedictorian of her PPCD class but that doesn't mean she is academically ready for the other Kindergarten class. We are going to discuss this further at her next iEP meeting which will take place fairly soon. I will hold off on details until after the meeting because honestly if I start typing then I start thinking then I start over thinking and then I want to drink a 12 pack of Straw Beer Ritas. None of this is healthy. In the midst of all of this my great grandmother died at 99 years of age. I was sad for my grandmother that she lost her mother because there isn't really an age where it's ok to lose your parent but I felt happy for my great grandmother who finally got to go reap the rewards of a life spent teaching others. She started teaching Sunday School at 11 years old and did so until 80 something years of age. I bet her treasures in Heaven are amazing. I took Anna and Carly to the visitation at the funeral home but not to the funeral itself. Carly did well. Anna wanted to know when that lady was going to wake up, why there were roses on that lady's box, and she also informed me that heaven is full of dead people. The next day Carly asked how the funeral went. I said it was nice. Anna said,"Was that dead lady there?" I'm glad I didn't take her but I'm glad she got a little exposure to death. There is never a good age to do that but I think all In all it went well. Kenneth is finally done with physical therapy and back on his regular shifts at work. Thank God! I love him so much but when he has been gone every third night for 11 years it is a hard adjustment to have him home every single night for 6 weeks. My hats off to you ladies who have your husband home every night- I'm not cut out for that. I need my time. Yes, the kids are here but when they go to bed it's just me and I love it- like right now. I think I posted what happened to him but just in case I forgot- he tripped over the cat getting out of the shower and dislocated his shoulder which was I guess pretty bad because it took 2 hospitals, 1 ambulance ride, and an unprecedented amount of narcotics before they could finally get it back in place. I want to thank the lady who would let out a soft "meow" every time he walked into physical therapy. She's my hero and doesn't even know it. Well, I suppose I must get to bed. Gabe is in the midst of an ear infection and sleeping like a newborn so I had better get an hour of zzz zzz while I can. Night.
First Day Of School
Sunday, August 25, 2013
The supplies have been placed in her cubby. The meds are packed up to take to the nurse. The ARD meeting has happened. The lunch is packed. The outfit is laid out. The hair is washed. The forms are all filled out. All of the tasks are done and all of the things are ready. But then there is me. I am not ready. I know this has to happen but my heart is breaking anyway. We met Anna's teacher on Thursday night along with the classroom aides. They could not have been nicer people who seem genuinely kind and caring and have a heart for the kids in the class. That maybe eased my mind a little but certainly not enough. I'm just going to lay it out there and if you are offended by it then I apologize. This is my blog and my feelings- I'm not always right but one thing I am is entitled to my own thoughts and feelings. When I first met with the head of the special Ed co-op I was excited about the prospect of PPCD. It sounded great. The main purpose of the class is to immerse kids in language. If for no other reason at least they will have the language to make their needs and wants known which can really cut down on undesirable behaviors. I mean really, what could be better than my child really getting better with her language skills. The plan was to let her spend some time in the regular kindergarten class for socialization but then to put her in the PPCD class for academics. Again, great plan. She would start with 30 minutes a day in the regular class and increase as she tolerates with the eventual goal by the end of the year being for her to tolerate the entire day in regular kindergarten with minimal extra support. She would then repeat kindergarten again next year in the regular classroom. But then we went to meet the teacher night and my heart broke. Reality is a bitch and she slapped me in the face. There we were in a room full of kids and I somehow felt my child did not belong there. I felt like she was too high level for this class. Most of the kids are non- verbal and although my Anna is not the easiest to understand she is certainly verbal. Most of the kids had some physical deformity and my Anna did not. I suddenly found myself feeling like the snob of the PPCD room because clearly my child did not belong there. But then I sat and talked to the teacher and the more we talked the more I realized she belongs there just as much as any other child in the class. She needs the close supervision and attention that she can only get there. She needs to be able to be taken to the bathroom every 30 mins- 1 hour. She needs the extra understanding that is required when dealing with kids who have disabilities. I'm learning that even as I think I have accepted things and that I am so understanding in the special needs world that I too still have ideas and prejudices that I didn't realize existed. In the end the only thing that really matters is that my child is in the best setting to learn and that she is content. It's time I put my big girl panties on.
Friday, August 23, 2013
She just got up that morning and she had made up her mind. She was going to do it. I wasn't sure how it would go given the 5000 epic fails we have had in the past, but I knew I had to support her and we had to try. We had tried every incentive program we could think of. We hadn't ever punished. We tried to bribe, too, because we are so not above that. We bought the required clothing and it just sat in her drawer, unused, until she decided she was ready for it. But that particular morning she woke up and she was ready for them. Panties. Little pink and yellow La La Loopsy panties. She put them on and she was determined to wear them all day long. She has now been in panties 3 days and has had a grand total of 3 accidents. 2 pee, 1 poop. Not too shabby. I cannot believe this day has finally come. She amazes me but more than that she teaches me patience. She teaches me that she will get it in her own time. And she finally did. 5 years, 8 months, and twenty days but who is counting?