Tuesday, January 31, 2012

It All Happens Here

I have one kid writing a thesis and graduate study practice on transitions from high school to community/work for young people who have FASD. That sounds like something that could be very interesting and useful as well. I will be interested to find out what they come up with.

Completely on the other end of things I have a kid who has been behaving very well for the past 10 to 12 days and she just can not let herself get to comfortable with that so she is back to the nasties again. The things she comes up with amaze me. She thinks that pulling her hair out (again) is going to get to us. It did not work last time so why would it work now. Oh, by the way according to her she is not doing it, it just comes out because I have been washing it for her. She thinks that sitting at the top of the stairs is bothering us, so I just said that if she wanted to sit up there she could spend the morning with me. She came down in a hurry. She thinks not zipping her jacket will cause trouble. I don`t care, if she wants to get cold so be it. It just never stops does it.

Now I have to get a move on it, put the clothes in the dryer and head out the door for appointments. I get to deal with Paul this morning and then Miss Attitude in the afternoon.

Monday, January 30, 2012


I spent a couple of hours yesterday coloring with Hanna. She will make sure she uses every single color in her work. Her hands had marker all over them by the time we were done, but who cares the kid was happy and I do not mind coloring every now and then. It is rather relaxing.

Paul joined us for about ten minutes. He colors, but he never has time to look at what he is coloring. He is so busy chattering about nothing, that he can not pay attention to what he is doing. His pictures are almost always just one color, because who bothers to take the time to get a different one.

Lauren colored for awhile too. Her coloring skills are really taking a hit. The regression is so clear when looking at things like coloring, hand writing, and school work. I am not sure she realizes the changes that are taking place, but I am and it is so hard to watch her struggle.

Today it is back to school and work, so there will be no time for coloring. I had to block an hour into my schedule to be on the phone with a scheduler in order to get appointments rearranged. That is something most people don`t get to do first thing Monday morning. Lots of appointments this week so by next weekend I will be ready to spend some time coloring again.

Saturday, January 28, 2012

Love And Hate

I have to say that having Hanna non-weight bearing has improved her behavior 90% of the time. She is confined to the recliner, the dinning room table, or her bed. We take her to watch TV on Sunday afternoons. We have someone watching her at all times to be sure she is not taking off. She can not run and hide from what goes on around here and that is keeping her out of a lot of trouble. It also allows us lots of time to talk. Yesterday she was telling me about an art project she is doing at school.

In this project they are to draw or write about things they love and those they hate (at least that is what she understands of it). From what I know about the project from the older kids doing it the idea is to make extreme contrasts in color, and object choices. There is no intention of delving into the psychology of it.

Hanna thinks and lives with everything in extremes. She related that on the hate side of the picture she put bowling, which she does not like at all because she can not handle the competition. The other things she named are lightning, thunder, ants, vampires, big trucks, and shopping. All of these things are very involved in the trauma she experienced as a young child. The things she loves are candy, money, cats, dogs, and coloring.

Her art work is clearly demonstrating that she does not have attachments with people. When candy and money come ahead of family and friends we have problems to deal with.

Friday, January 27, 2012

Get Err Done

This week has been really just plain nuts. Actually as I think about it I get a bit overwhelmed with the amount of major stuff we are dealing with right now.

Monday I did paperwork (have to pay the bills), laundry, and made some meals up to get us through the next couple of weeks.

Tuesday, I went to the Social Security office and got to spend several hours being totally frustrated in trying to fill out forms for Allen. The newbe did not know what she was doing so this is going to take a very long time to get done. We had gone through this same process six weeks ago for Lauren and got everything done with no hassles. The Newbe was trying to tell us that our kid who has a long list of diagnosis and functions at the level of a 2 to 3 year old would not be considered disabled. The thing is the person working across the isle who has seen him in action was just shaking her head and nodding in agreement with what Dad and I were saying. Why couldn't`we get her to process this for us? Now, we have to do this the long complicated way. We will get it done and he will be found to be disabled. I am pretty sure Allen would rather be able to work and take care of himself, but that is not where he is so we will just have to get that in writing. (Actually we already have that, but that does not count), whatever.

Wednesday, I spent the morning at the clinic with Hanna and then returned a call from Lauren`s neurologist. They wanted more lab work so I went back to the clinic with Lauren. (The receptionists don`t even ask the annoying questions any more, they just tell me to go ahead and have a seat).

Yesterday I had to take Paul in for a physical because he needs to have a sedated MRI next week. Paul has grown a little bit and there have been some significant changes in his behavior and vision.

Today I am getting my hair cut and then I have to do some work on a school issue, which I will blog about at some point, but not right now.

We have 3 kids dealing with some pretty big medical issues right now. Allen just needs to keep on doing what he is doing because we do not need him to have some crisis for awhile. I can say that I never run out of things to do or places to go. I can do this, one thing at a time, we`ll get err done.

Wednesday, January 25, 2012

Rough Morning

After 4 hours at the clinic getting the old cast taken off, staples and stitches out, having x-rays, and finally a bright pink cast put on all Hanna wanted was some onion rings and the blue chair. She fell asleep so I took this picture of her to prove to her that she actually can sleep, sometimes. We did give her medication to calm her down (my arm has some lovely marks on it from her squeezing it so hard) but she is 14 and deals with this medical stuff very much like the average 2 year old does.

Hanna usually chooses hot green (like her blanket) but the green they had for casts was not bright enough according to her, so she decided that pink would be just fine. She will look great with one bright green shoe and one bright pink cast. Now we just keep on doing what we have been doing for the next 2 weeks and then we go back for round 3.

Tuesday, January 24, 2012

Think Before You Do

This morning as usual Paul was being his unmedicated self. We give him twenty minutes to clap, sing, jump, eat a few bites of cereal, stomp, holler about how he does not want to go to school and then repeat the same routine over several more times.

I am always sitting on the chair next to him telling him school will be fine, getting meds into all the kids who need them, tying shoes, helping the girls with their hair etc.

This morning Paul added some classic FASD impulsiveness to the routine. The timer had gone off fifteen minutes into the morning chaos as usual and then I told him it was time to get his boots and backpack on the rug by the door so we could get ready to go outside. He hollered "I`m gonna ..." and the glass of milk, which he should have been drinking was thrown at me. I am not sure if I got more of it or the floor did? Then he starts hollering that he wants some milk. No, more milk this morning, boy. The floor I cleaned yesterday needs to be done again.

He went out the door screaming because after that little scene there was not time to go look for his Army cap, which he wanted to wear. When they can not even think through a complete thought before acting they are sure going to get themselves into a lot of trouble in life.

Monday, January 23, 2012

My Work Day

I put on some cool, (at least to me), loud music and got that grouchy mom letter done.

Next I signed my four and a half footer who has Down Syndrome, Autism, and FASD up for the selective service as required by law when the guy turned 18. The Air Force has already tried to recruit him when he was 15. When I told them I didn`t really think they wanted him to be flying planes, fixing them or anything else, they tried to tell me that they needed to talk to him. I told the guy that he would not understand anything they were saying and they certainly would never be able to understand him, they finally went away. They sent him some airplane posters, too. At any rate if there is ever a national emergency the man is signed up and ready to roll.

Then I cleaned bathrooms and the kitchen floor.

Tomorrow is my birthday and guess how I get to celebrate? I get to trudge over to the Social Security office. They tell me this should be the last trip. I hope so because I have filled out far to many papers for them. Hey, whatever happened to the paperless society here?

Angry And Maybe A GROUCH TOO

We have 2 girls in wheelchairs right now, some extra work but we have it under control at home. We have one who wants to carry her lunch box on her lap, not a big deal, UNLESS the bus driver decides that he does not want her to do that.

This kid can push herself carrying several things in her lap with no problem at all so what is the big hang up. Apparently she dropped the lunch box on the bus so now they have an issue with it. Well, if she happens to drop it let her pick it up because she can do that easily. Now you might think that I am just being a grouch for no reason. The kid will not tell the guy that she wants to carry her lunch or to leave her alone, but when she gets home she sure will give us a tantrum about the matter. We had one of those last week about this and I would just rather not go there again if I do not have too.

There are lots of situations where these kids can not be treated like average teenagers, when there are little things that they can do and someone does not let them do it I get a little crazy about that.

I guess I have to make a call to the bus company and put this in writing. I just love having to write letters about stupid stuff like this don`t-ya-know.

Thursday, January 19, 2012


Really, does she HAVE to be so darn RADical all the time?

I had taken Paul to a medical appointment, nothing new there, I have kids at appointments all the time. When I got home about 5:45 pm I walked in and saw Hanna sitting is the recliner so I asked her what she was doing and I got the none of your business routine so I left her there with no other comment.

We had dinner and then she lost it. Apparently she was mad at me because I did not bring her to the dinning room table so she could color before it was time to eat. Well if she had asked me I could have taken her there, no problem but she did not ask.

We never let her go anywhere with her crutches without someone right there to moniter because she has significant balance issues, but the kid just took off and because she was still steaming mad, she was not paying attention to what she was doing and so she fell. Thankfully she landed on her backside instead of her injured foot. She got an earful about that stupid stunt and was put to bed having a screaming fit.

This morning when I went to get her up I discovered that she had gotten out of bed and gotten some stuff from her closet. She is not supposed to be getting up at all without someone there and she clearly understands the rules but apparently she does not care.

I guess someone is going to have to sleep in her room with her. That will most likely end up being me. It is so not fun being her mom!

Monday, January 16, 2012

Out For Pizza

Karre had a birthday yesterday. She celebrated with her friends. They went out for ice cream and got their nails done. The Hello Kitties on the nails are adorable. We called her to wake her up with the loud, very off key, singing of her four younger siblings. Their serious speech impairments make their singing something awful. That singing might just send one straight back to bed. She got the message that they wanted to wish her a Happy Birthday, though.

This evening we left the littles at home with PCAs and went out for pizza with Karre. It is nice to have a low key, sensible, adult conversation every now and then.

Friday, January 13, 2012

My Really, Really Old Lady

This morning Hanna said "I am a really, really old lady...not like you, your just a mom".

Coming from her I am taking that as a compliment. We are home after some real hospital adventure.

Hanna went to have her foot rebuilt. She has a bone graph to build her an arch which she did not have, a graph to aline her toes correctly, screws and pins to put the heel together, and a shortened hamstring to bring her foot around so that it faces forward. This according to our states health care system is a same day surgery for anyone twelve years old or older. Both our pediatrician and surgeon requested that she be hospitalized for at least 48 hours. Those requests were denied. We went to the surgery center prepared. She had the procedure which went fine. We then had a SCREAMING, crying, out of control kid for the next 7 hours! There were 2 nurses and I trying to take care of her. The surgeon and another physician stayed, too. They were giving her as much medication as they could without running an IV, because she could not be sent home on an IV. Finely the surgeon called some medical director who came to be everyone`s Superhero. The three physicians conferred for about 5 minutes and then this guy asks me if it would be okay to start a morphine drip on her? Of course I said go for it and within fifteen minutes we were making some progress. My Superhero guy then got on the phone with the state and 10 minutes later they were requesting an ambulance to transport us to the hospital. After all that drama those nurses and I were exhausted and so happy to have quiet that we just stood there looking at the poor kid who was still shaking and whimpering, but oh so gorgeous in the state of calm.

We had an ambulance ride across town and then spent an hour in the ER while they got things in order to admit her.

When we got to the hospital we got the same room and 3 nurses that we had had last year when Hanna had her other surgery. The social worker that was there had also been there before. I was one happy mom by then because I didn`t have to explain anything to them. They already trusted that I knew what I was doing when it comes to caring for this kid. They asked questions and followed through well.

So we had a sleepless night with drama going on in the room next door, a kid trying to escape from the unit,(which sets alarms off and sends people scrambling very quickly) and people in and out of our room every 10 minutes. We got Hanna off the IV about 5:30 pm yesterday and we came home about 9:30 last night. I turned the Hanna watch over to Dad, crashed until 2:00 am when I got up to relieve him.

This is one adventure that was pretty costly and certainly was avoidable, if the special needs some people have would be factored in when decisions are made. Hanna will need this same surgery done on her other foot some day, I wonder if I will be going through this adventure with my really, really old lady again? I will have my bag packed, be ready for another ambulance ride, and a trip through the ER.

Monday, January 9, 2012

Took A Break

We took a break. It was so needed. We found some warm weather, okay it has not exactly been Minnesota cold so far this winter, but it isn`t exactly swimming weather either. We went to swim, play in the sand, spend some time with the older kids, played cards, and ate good food.

Now we are back to school, work appointments, paperwork, and all the rest of what goes on around here. It is Hanna crazy land as usual. She never takes a break, ever!

Things are just as they were when we left, the same old same old stuff. I know that is just the way she rolls, but hey I can wish that things can change can`t I?

Today I got the paperwork, phone calls, and laundry under control. Tomorrow I have to take Lauren for a bunch of lab work, (what fun), and then Wednesday Hanna has surgery on her foot. Keeping things under control with her will pretty much take up the rest of the week. The plan is to send her back to school next Monday and I hope that is how this all works out because by then I may need another break.