Why?

Yesterday morning I had gotten Paul, who was kicking, screaming, arching his back, meds on board but not yet doing any good, all bundled up, snow pants, boots, jacket, mittens, cap, backpack, and lunch box, he was ready to go out the door. Well he was as ready as he was going to get. Then he yells at me that he needs to go to the bathroom, oh yeah, great, you already went, but this mom is not going to risk it, so we go through the entire process that was just completed in reverse. I take hm to the bathroom and of course he does not need to go, (clenched teeth and maybe a mumble or two from Mom). Then he asks me "why does the potty have a door"?

Okay we are kind of in a hurry because the school bus is coming any time, but while I am putting his pants up and helping him to wash his hands I start telling him that bathrooms have doors because people should use them in private. Then he is telling me that the potties at school do not have doors, so now I have to think because I know that the bathrooms at his school do have them. Then it registers, duh Mom, he is talking about the toilet seat having a cover, the door. The only place that he goes that has toilet seats with lids is at home. Now I have to do the mom thing, keep from laughing and explain that I really have no clue why this is, and besides who cares anyway, and at the same time I have to very quickly get him back into all the required winter garb and get him outside before they get Lauren`s wheelchair loaded on that bus.

As soon as I plunked him on the steps, out the door, Karre and I looked at each other and just cracked up. Paul is just such an amazing kid. He has absolutely no clue about ABC's or 1,2,3,s and he does not give a hoot about circles, squares, and all the rest of the stuff they are trying to get him to learn in kindergarten, but he can ask about the potty having a door! I think I had better do a little research, or something because he is going to ask me about this again. When he gets something stuck in his head he will not stop talking about it until he has the answers figured out.

To Hot

We got fifteen inches of snow over the last couple of days. That is a lot of snow to clear away so that we can get vehicles moving. We have to keep the driveway cleared because Lauren`s power wheelchair does not like winter time at all. Dad tells her all the time that we should put some chains on that thing to keep it from getting stuck. She has absolutely has no idea what he is talking about, but she laughs at his terrible joke anyway.

All of this snow reminds us that it is still winter here, still freezing, still wind chills, and still a lot more snow to fall.

Apparently it is no longer winter in Hanna`s world. Her meds have been reduced considerably so now she is sleeping a lot less, is more hyper and impulsive, and is perseverating on things a lot. Last night I heard her bouncing around in her room so I went to tell her to go back to bed since it was 1:30 am. She told me that she was not tired. Then I noticed her pajama sleeves had been ripped off. They were laying on the floor. I went into my what on earth are you doing in here rant? Hanna explained that she was hot, very hot and she made her shirt one with no sleeves so that she could cool off. Really now, we tear the sleeves off our shirts rather then getting a short sleeved one from the drawer and putting it on, or even going without one for that matter? (In her room in the middle of the night I guess I would have no issue with that).

Those nice warm, winter, pajamas Hanna should be wearing for several more weeks are trash. I guess she thinks winter is history. Now I wonder what her plan is for when she gets cold, oh yeah, she does not plan anything.

A Good Morning

We had a good morning around here. There have not been to many of them lately. We had the meds have not kicked in yet stuff, the endless chatter from Paul. He wanted a rain drop (cough drop) and was not getting one. He then went into his tar pide (star pride) obsession. It is a thing that they are doing at his school which he does not understand at all, but he obsesses with wearing the t-shirt which is a dress on him. Hanna was flapping and stomping, but getting things done anyway. There were no flying AFOs or shoes, no one was screaming out of control, and no one got bonked over the head with a backpack or lunch box. Everyone left completely dressed , including socks and under garments. Everyone had their hair combed and teeth brushed. The boys had their spectacles on and the girls had the rubber bands on their braces.

It is a real Friday and having it begin well is making the rest of it a great day.

Just Take Me Away!

Now that we have reduced Hanna`s medications a bit she is not as cool, calm, and cute as she has been. Things are getting a bit rougher around the edges and she has been using a few of her old stand by`s to push peoples buttons and push them away. We lower the medications again this weekend, now this is getting to be work.

Lauren is currently in her room pitching one heck of a fit. She does not like her new system of communicating and is refusing to use it so that leaves her not getting things done and getting things that she wants because she is not going to "talk" to get it. Her seizure medication is working to get rid of the seizures, but it may also be making her quite irritable, so what do you do about that? She has regressed so much lately that it is scary.

Karre had the flu yesterday so now I am on the lookout for the rest of them to get it. This is something that is never fun with kids who have special needs, especially when they will not or can not communicate to you that they are not feeling well.

Allen has a medical appointment this morning so I hope Lauren settles down so that we can take her to school on our way to that, or poor Angie will get to listen to her scream. (got your ear plugs ready, Angie)?

It is never one thing at a time around here. There is always a pile of garbage to deal with. It is going to be fifty degrees plus here today so I am going outside at least for awhile.

Medication Transition

We have begun to taper all of Hanna`s medications. We need to do this in order to make some major medication changes. The need for change made itself clear following her surgery when she was put on medications to deal with pain. These medications also generally slow people down in fact for many of us it would be sleep time 24/7. On these medications Hanna was able to remain calm almost all the time, at the same time she was able to function well. You could tell when she was getting ready to lose it and had time to redirect her. We have had two melt downs in the last month,rather then the usual two or three a day.

I would like to have a kid who does not need medications in order to control her behavior, however that just is not going to happen any time soon, and most likely it will never be possible for her. We will come up with a new plan that hopefully will allow her to function at her best. We just have to get through the taper first. I am sure there will be some crazy, awful, behavior before this is done, but we will deal with it in hopes that eventually things will improve greatly.

Friday On Thursday

It is Friday, well actually it is Thursday, but for me it is Friday. I have had the first four days of this school week to get everybody and everything back to functioning as it should be. Tomorrow there is a pep fest, which means all of the schedule changes at the 7-12 school, which means kids who really need routine get thrown for a loop,and besides that the teacher who works with three of my kids all day long is going to be gone leaving a sub to get everybody through the day in one piece. All of this means that Hanna will be home with me.

I am really glad to be doing my routine and am okay with having the kid here with me tomorrow because that is better then her losing it at school right now. We will just color a lot of pictures and make a puzzle. I also am planning to have her help me make Banana Bread which is one of her favorite things to eat so I am pretty sure I can get some cooperation from her with that task.

Ready or not here comes the long weekend. Hey, it is warming up so outside it is for most of them, but then I get to clean up the wet, muddy, jackets, snow pants, mittens, socks, and caps.

Attitude

There was plenty of girl attitude around here this morning. It was loud, pouty, and just not the sort of wake up material I like to start the day out with.

Lauren is just plain MAD because she has to use her communication device and there is no getting around that. Her speech has gotten so bad that even the people who are around her all the time and usually understand what she is saying no longer have a clue as to what she is saying. This is likely due to the seizure issue we are dealing with. Anyway it is not going well. Her seven thousand dollar device is not working and has spent far to much time in the repair shop. The state may get some of the money they invested in this back, but that will take a while and yeah, do not get me started on all of that, except to say that we are looking at other devices that may work better, but they are not called "medical" devices therefore are not going to be covered by insurance, they do not cost thousands of dollars either, and beside that we can not ask for another one for at least seven years, sigh, sigh, sigh. Lauren is the type of kid who wants things to go her way, but she does not EVER think that she has to work for that to happen. She has that princess attitude about her and believe me she uses it to get what she wants. Right now home and school are making her work and the poor girl just does not know what to do about that except pout, and she can really pout with the best of them.

We also had Hanna attitude as she thinks her life is boring and she never gets to do what she wants to do and all she wants to do is be crazy, wild, and run around, yadda, yadda. We told her that her life could get much more boring if she chose to do any of that stuff that she wants to do. I hope her meds kicked in and she calms down for the school day. We will deal with her attitude again later.

Life is not quite as terrible as they think it is. I think I better find something calming to do before they get home from school. We are in for some attitude this evening.

Organized In The Cold

I just had to smile at Hanna. She needed a shower so I gave her one and of course she did not bring her pajamas and underwear to the bathroom (that would involve planning ahead and her FASD brain does not do that very well). After getting out of the shower I had her dry herself and then I told her she needed to wrap up in the towel and go to her room to get dressed. As she walked down the hall to her room she complained about how cold she was, very, very cold and how this is winter and it is cold, cold, cold all the time. Yeah I can agree with that it is really cold here. When we got to her room I grabbed a pair of underwear out of her very organized underwear drawer (just like the one pictured above) and handed it to her. I figured that since she was so cold she would hurry and put them on and get dressed. The kid threw the towel and underwear on the floor while completely nude, took the time to completely reorganize the drawer, since I had messed up her pattern and she could not get dressed until it was fixed.

Quiet

There is absolute quiet here this morning as everyone has gone to school or work. I have no one to take care of. I had time to workout this morning. I am not the workout type, but I really did miss turning on the tunes and working out. I got the floors swept and scrubbed, oh yeah all of them. I need to run the vacuum cleaner yet. I Think I will put something in the crock pot and bake brownies too.

Hanna is back in school, although she is supposed to remain calm and keep everything very low key. This is not the best week for sending her back to school since it is snow week and there will be schedule changes and a sub the end of the week, too. She is coming home about an hour early today and then we will see how things went and go from there.

Dad and I talked with Hanna quite a lot about staying calm. She admitted that this is going to be really hard for her. The fact that she can tell us that, is a step in the right direction for her. Now the question is will she be able to ask for help when she needs it or will she try to be "tough chick" and dig herself a huge hole that she can not possibly work her way out of?

I really like this quiet so I am hoping that Hanna does well and I am adding a few extra prayers as well just for good measure.

Thank You So Much

Over the past 2 1/2 weeks I have been doing nothing much except for keeping Hanna under control, oh now and again I have loaded the dishwasher, started the washer, or helped another kid with something or other, but when it comes to doing what I usually do around here I have been on strike. My house is pretty much a mess, we need groceries badly, and I have lots of things to catch up on. I will get things back to routine as soon as I can. Hanna has a medical appointment tomorrow and hopefully she will be getting back to school next week. I have missed my "Mom" time when I can take care of myself and do the things that I need to do at my pace.

Our ship is still sailing, just not quite the way Mom does it, sorry Dad, you really do not have this ship running thing down, but I do thank you for taking over for me. Everyone is surviving. We will just straighten things up a bit soon.

Karre I am sssssooooooo glad that you have washed and dried a MOUNTAIN of laundry and kept the number of dirty dishes down to reasonable. I will get the laundry folded and put away and yes, I will get back to doing the dishes too.

Allen, you are a sweet big brother, thanks for doing Hanna`s chores for her. I do not know what we are going to do when she can do them herself again. I know you are going to protest and try to do them for her.

To Hanna`s Godmother thanks so much for watching her for a Short while so I could get out of that hospital room and relax. Taking a break just for a little while makes all the difference in the world.

To all seven of the PCA`s who have been working extra, unscheduled hours, thanks. You are truly appreciated.

To the nurses and doctors who have been taking care of Hanna, thanks. I so much appreciated your asking for help when you could not understand her speech or did not know how to deal with her behavior. We do not have all the answers, but when we work together things seem to work out for the best.

To the school personal who have called with concern for Hanna, thanks. Thanks also for being flexible and working with the changes that need to be made so that she will be able to be in school.. She will be so happy to be back to that routine.

Thanks to the friends who brought dinner for us. I know you usually cook for three so taking on all of the hungry people we feed is not a small task.

All of your thoughtfulness and help has made this process much easier for me. To have family, friends, and a community so generous is truly a blessing.

It Is All About The Love Month

A new month today and it is going to be a heart happy one at that. My kid is going to be healthy enough to go back to school next week, oh yeah God willing she will. We have to think about a few short term adjustments, but we can handle that. This morning as I tried to explain how long it was until next week to Hanna who does not understand time, I thought to myself next will get here soon I hope.

We have her back on track spending most of the day in a daze and sometimes she even falls asleep. Do you know how sweet it is to watch a kid who NEVER sleeps, sleep? She just looks so peaceful all curled up in her covers. I wish she could learn to calm herself down and relax like that every day. She is so lovable, and just a sweet, sweet girl when she is not going crazy all day long.

We will get back to working on all that attachment/FASD stuff soon enough, for now I am happy to have a break from all of it for a short while.

I had better get the roast and vegetables going so that when Hanna gets up the two of us can get Paul`s valentines written out for his class party. I told her that I had a surprise job that she can help with and that is one she will enjoy doing.