Monday, February 27, 2012

The Storm

The past few days have been relatively calm and quiet here. We had a cheating issue when Lauren, Hanna, and I were playing Crazy Eight yesterday. Even with Hanna cheating I won the game, so she was sputtering about that and how it is not fair. Paul was hopping and screaming because he had to pick up the shoe box full of playing cards. (It is a box of mismatched, left over cards that the kids play with). When he did not pick them up they became mine. Other then that we did chores, watched a movie, made pizza, and played. Dad and Paul pouted a bit when the Daytona 500 was rained out, but they will get their racing fix tonight.

This morning things started to fall apart for Hanna though when she thought she was going to leave for school with her pants rolled down to show the world her behind. I told her to put those pants on correctly, but I bet as soon as she left the house she was back in business. When she got home her pants were back to being inappropriate. She then decided to get loud so here we go again. She says she is not doing her homework, not taking a shower, or throwing her dirty clothes in the laundry. She is slamming her bedroom door and screaming nonsense right now. If she does not do what she is supposed to be doing before she goes to bed she will be adding to her detention tomorrow.

All of the weather people are bringing out the big scary storm forecast so maybe it will be her lucky day and they won`t have school tomorrow and she won`t earn any more detention. In that case it will certainly be my very unlucky day. I will either be dealing with a snow storm or a Hanna storm or maybe both. I went and got groceries today so we won`t starve or run out of toilet paper. That is how you prepare for snow in Minnesota. Now to prepare for a Hanna storm you line things up for the other kids to do to keep them out of the way when she starts throwing things and be ready to ignore lots of noise.

Let it storm! We are ready for whatever comes our way.

Thursday, February 23, 2012

Together We Can Do This!

Awful, just awful, that is what Hanna`s behavior has been since last Sunday. She has been ripping her mattress up to make a house for her stuffed animals (so she says), she lost or threw away her good coat, refused to shower,brush her teeth, comb her hair, use deodorant, and rather then put clean clothes on she put them on over the dirty ones. She had been going to school looking acceptable, therefore they could not do anything even though her hygiene routine was not being completed. She thought it was pretty cool to get away with this. She clearly understood that Mom was not liking what she was doing.

Well, finely I had had enough so when I had the teacher on the phone to discuss some other things that were going on we had a chance to come up with a possible solution for the manipulation which was taking place.

Yesterday morning the plan went into action. Hanna had not showered the night before as she was supposed to and she had a medical appointment so she would have had time to shower in the morning, but still chose not to. She did not do any of her other hygiene routine either. I called school and told the teacher Hanna would not be there until she had done everything she was supposed to do. She heard the conversation, (I made sure she did). I took her to her appointment and she gave everyone there the poor me, I want to go to school, nonsense with tears and all They bought her whole sad story. Oh, how I wanted to set her down right there and give her a good talking to. Like kid, you are always telling me how you want to be like the other kids who are 14, yet you are acting like a preschooler. I was the "good" mom and restrained myself because I figured all of that logic was going to blow right over her head anyway.

We came home and without saying anything I began my day. After about half an hour of screaming at me and throwing shoes she was ready to do what she needed to in order to get out of here. (Staying home with me is torture for her). She showered, brushed her teeth, put clean clothes on, and all the rest of the routine in about 45 minutes. She also had to pick up all the shoes she had thrown out of the basket. She had to then call and ask if it would be okay for her to come to school. She went, Hallelujah! Peace and quiet!

When she got home Dad asked her how her day was going and she said "not really good, I in big trouble". She then had to explain that she had earned 6 lunch time detentions and could not wash tables for 6 days to make up for the unexcused absence. Losing lunch time means no time to "look" at the boys and not washing tables means no money. Hanna really likes both boys and money.

This will likely work, at least for the next 6 school days. I am sure she will be facing these consequences many more times. We can not have her pulling home and school apart with her manipulation. We are a team and we need to work together or she will make all of us crazy. Having good days is something that Hanna is capable of doing, but it feels very uncomfortable and scary for her. I think at some level she will always have a need to frustrate the people who care about and for her because it ensures that no one gets to close to her.

Monday, February 20, 2012

Boys, Boys, And More Boys

No school today and I am getting nothing done here. Hanna is in, well the usual big attitude, or better yet, the boy crazy attitude form.. That started yesterday and she is on a roll so why stop?

Today it is boys, boys and more BOYS! She has told me today several times that she can do whatever she wants to because she does not like me and I have dumb rules anyway. She likes boys, all of them, except of course her brothers better then a family and she will listen to them cuz she wants to and she really loves to do it because it will make me crazy.

Yeah, it does make me pretty crazy, but it scares me even more then that because she just is not going to stop until she gets herself into lots of trouble, the kind that Mom and Dad can not get her out of.

Tomorrow is a late start here for teacher training so the morning routine will be a mess once again and then Wednesday Hanna has an appointment early in the morning so I guess we are in for at least a couple more days of this nonsense. I just figure this week will be one of those that will be loud, nasty, and generally unproductive.

Saturday, February 18, 2012

In The Class Of 2012, Maybe???

How on earth could this young lady, all 98 pounds of her cause such a commotion in the eyes of a school district`s administration, all because she is a senior and wants to be included in the activities that being a high school senior bring about. Does anyone remember what being a high school senior meant to them as a teenager? You had made it, you had confidence, friends, and oh so much going on. There were senior photos, parties, class trips, the year book, it was the last time around for everything, you weren`t going to spend to much time doing school work, and no matter what you were going to have fun this year.

That is how things are supposed to work, except when you happen to have a disability which is getting in the way. Lets put the complicated mess this way. Lauren is and has been mainstreamed and included with this class of students from day one. These kids have been her classmates, they have read to her, helped to tie her shoes, opened doors for her, played Sorry and Uno with her, had art, choir, lunch, recess, and media with her. They have invited her to their birthday parties. (I still smile to myself when I see the kid who invited her to his sledding party, but did not bother to tell his mom that she was in a body cast). The mom and I worked things out and they had a great time.
Now because she qualifies and would benefit from extended transition services she can not participate in graduation ceremonies. How do you explain that to her, when she understands that she is a senior and her class is graduating, yet she can not do that? What do you say when she asks how many months until May 31st? How do you address the situation when she is expected to pay class dues yet can not participate or when they send tickets for her to sell to a pancake breakfast which raises money for an after commencement party which she may not be able to attend? This has been one frustrating situation after another to deal with. There have been tears and but Moms and that`s not fair. I totally understand, yet I can not do a thing about it right now.

Lauren`s Dad and I have decided that things need to change, hopefully in time for Lauren, but if not then for all of the other kids and their parents who will be in our situation in the future. We know there are lots of families who can not deal with this so we will. We have been seeking an appropriate solution since May of 2011, with none to date. This now involve the legal system and could get a bit messy, but it is the right thing to do for the kids.

in part what I wrote to address the issue:
There are situations where students have attended four years of high school, whose individual education needs require the continuation of special education and transition services beyond the fourth year. While participating in school students with disabilities gain meaningful connections with a class of typical, age appropriate peers who graduate in four years. A high school commencement ceremony with their peers is an important rite of passage regardless of their ability. There is value in recognizing students accomplishments, even if those are working towards meeting the goals of an IEP. They should be allowed to participate with their peers without forfeiting their continuing special education and transition services.

We need all the prayers we can get, a large, loud cheering section would also be appreciated very much and maybe we will get this resolved soon. I still find it hard to believe that we are even having to deal with this!!!

Thursday, February 16, 2012

A Broken Heart

Yesterday was a long hospital day with Hanna. She needed 2 teeth removed and some work done on her braces. This was going to require sedation so I left Dad in charge of things at home and got on the road.

We got there met Mr. N. our usual check in guy. (He is actually an amazing man who spent much time in a hospital as a kid and uses a wheelchair so he totally gets the kids he works with as he has done it all). I got the folder of paperwork to do, in which I sign my kid over to the staff for treatment allowing them to do whatever it is they need to do to bring the kid back in one piece. I go over all of the maybes, could happens. and the like as always and sign off on it. We then get Hanna weighed, vitals taken,go over the when she ate, drank, took her meds, etc. and talk her into putting the crazy night shirt thingy on. ( She does not like that at all). I chat with the nurses. Ms Red Head has had her baby so I check out the photo of the little guy, we talk about how the holidays and vacation went, and they ask about how Lauren is doing so we chat about that a bit, too.

Everyone took off to attend to other matters so I was left to distract and redirect Hanna for a short time. Then the Family Life Specialist Ms S., who I have known for many years now, pops in to say "hi". She says she is going to hook up a video game for a couple of teenage boys and she will be back. She comes back and we begin the routine of rocking, playing tic-tac-toe, drawing, and then repeating the same over and over again. We usually have a lot of walking the hall in the routine, but not today with Hanna non-weight bearing yet. Hanna chooses cotton candy Lip Smackers for her oxygen mask and she proceeds to put about half of it on her hands so we get that cleaned up and then we just keep doing the same things over and over again until our customary hour wait is over and no one has come back to get us so Ms S. goes out to figure things out. They are running behind schedule, so we will have to entertain for a while yet.

Ms S. asks Hanna about her cast. She tells her that Mom drew the bird (it looks like a chicken), made the peace sign, and wrote love on it. She has signatures from some teachers, doctors and kids on there too. Then Ms. S. asks who drew the heart on the cast.and Hanna tells her she did.

Ms S." how come your heart is half black and half green with a crooked line down the middle of it".

Hanna "I make it like that cuz I got a boken (broken) heart".

Ms S. "and why is that"?

Hanna "me and him goin sudy and we boke up cuz him not in my art class no more that why I got boke heart". (we figured out that she was trying to tell us that she and some boy, who she thinks she was going steady with, broke up because he is no longer in her art class)

The boy in question is 1 of 2 that she likes and I am not sure which one is so lucky as to be going steady with her, so I will just call him Art Boy.

Ms S." so what do you 2 do when you are going steady"?

Hanna I draw him pictures and him is funny and makes me laugh in art class".

I figured that since we were on the subject and we needed to keep her busy I would get a piece of paper and the markers out. I asked her to draw for us the kinds of things she drew for Art Boy. She folded the paper in half and drew green and pink hearts, xs and ox all over the front of it. Then she opened it up and with the same green and pink markers drew 2 of her famous stick figures with Botox lips on the inside. They were situated in an intertwined, inappropriate manner. She drew a large heart around them. She told us that they was really in love, forever.

Before she could go any further with this drawing it was time for me to put my white, paper, marshmallow suit on so we could head off to the OR. Once she was sedated I went back to her room, sat down to take the marshmallow garb off. when Ms S. walks in. We just look at each other and both crack up.

I am sure Art Boy has no clue that he had been going steady. The reality is that this teenage girl, who so much wants to be like her peers, with the mind of a little girl, would do just about ANYTHING to fit in. She scares the heck out of me when she does these things though.

Saturday, February 11, 2012

Pumkum Face

Paul has a pumkum (pumpkin) face now. He went to bed the other night missing only the one tooth he had lost at Christmas time. The next morning he came into our room looking like this. When we asked him where his teeth went, he told us he had eaten them. I changed his bed looking for them, but found nothing so I guess he really did eat them.

The dentist will be happy to see him missing a few teeth because she was getting a little worried since he is 7 already and had not lost any teeth yet. I have never had a kid lose both of the front teeth on the same day before. Mr. Adorable is growing up.

Wednesday, February 8, 2012

Another Day, The Same Stuff

I spent all day yesterday with Lauren doing a transfer from pediatric care to lifetime care. This is how it works. She has a team which includes, a physical medicine physician who is the case manager, 3 neurologists (that number may decline when things get figured out), an orthopedic specialist, women`s health physician, a technology specialist, orthotics technician, orthodontics/dentistry, a social worker, occupational therapy, physical therapy, and speech. Including myself and Lauren there were fifteen people present.

We met for the entire afternoon. Lauren left after about an hour because she was pretty much our of the loop and was looking bored with us talking about things that she does not understand. We had her AFOs repaired, got a part ordered for her wheelchair which will enable her to sit closer to the table (she is excited about that), started the process to re-evaluate her communication needs, got a surgery day set up for phenal, and talked at length about all of the neurological issues that are going on with her.

It went very well. I was amazed that everyone was able to stay for the entire time except for the orthodontist who got called for an emergency. I like this system of providing care for people who have complex medical issues. It works because everyone knows what everyone else is doing. They talk to each other and take into account all of the needs of the patient and their family and/or care givers. Until things get running smoothly we will be meeting quarterly.

Today I spent most of the morning at the clinic with Hanna. They took her pink cast off and did another set of x-rays. The doctor said they could just wrap her foot, but she would still not be able to put any weight on it for another two weeks. After a quick discussion we decided that she needed to recast because if we take it off she is going to walk on it or pound it on the wall or floor or something when she gets in her angry mood. (That happens far to often and is to violent for foot safety) I am surprised that she has not done any damage to that foot with the cast on. They were out of bright pink cast material, so the nurse ask her what color she wanted and Hanna says "not red cuz that looks like blood and it is gross, not blue cuz that is for boys, and not purple cuz we need to save that for Lauren (we have had plenty of purple casts) so green I can live with, but it`s really not a cool green". It is a pretty dull green for the Hanna look, but it works for me.

Tomorrow I don`t need to leave the house until about 4:45 in the afternoon. I guess I had better spend some time cleaning the bathrooms, doing laundry, and cooking because next week is going to be full of medical stuff, too. We are still in marathon mode with appointments. Some day there will be a week without anything scheduled, but I sure don`t know when that is going to happen since things are already getting on the schedule for August.

Monday, February 6, 2012

Is It Still Morning?

Is it really still morning? I feel like I have been running for days already.

We got the results of Paul`s MRI and of course it is a lot of ifs, maybes, and so on. I have to try to get a disc of one of the MRIs that were taken at the time of his TBI. Adoption makes this a bit tricky and certainly time consuming.

Next I got a call from the Social Security office and I am Just not dealing with this!! The Dad and the Lawyer can handle that hassle.

After that a social worker called because several members of Paul`s birth family want contact with him. I guess it took seven long years to wake up and realize that they are missing out. I told her that we would have to think about this and I do not have time to even do that until we get some of this medical stuff under control. We have no issue with contact with birth families. It is just we have to figure out if it is safe, how we would go about it, and explaining it to Paul? He does not even understand what adoption is in the simplest terms sssooooooo......

Next I have a PCA evaluation, of course those always seem to come up far to soon.

We had a very awful weekend with Miss Attitude. I will spare you most of the details, but now the crayons, colored pencils, and markers are locked up and the crutches have been taken away because she used them as weapons. We are very fortunate that two of her siblings did not end up in the ER.

That is pretty much how this Monday is going. I hope to escape this evening to spend a couple hours with some other adoptive parents, that is if things are some what under control at home at the time, we will see. I am ready to go back to bed and start this day over.

Thursday, February 2, 2012

Just Thinking...

We are on a crazy pace of at least 15 medical appointments/procedures for 3 kids in the first 2 months of the year. It is beyond crazy, and I sure did not plan for things to work out this way, but one thing and then another just happened so here we are just trying to keep up with all of it.

We left the house before 5:00 am yesterday in order to be at the U of M by 7:00 am. I spent the entire day there with Paul. We decided that we would get as much done as we could while he was sedated. He had an eye exam, MRI, and EEG done. That took all morning so I had some down time to make phone calls and read. I then got to spend the entire afternoon rocking my little boy. He usually does not sit still to be rocked so I enjoyed just watching him sleep, interrupted by one beeper or another occasionally. His IV arm was covered with cars stickers, he had cars on the pajamas and slippers they put on him. This was all done because the child life specialist had been there for his last procedures and she remembered how much turning everything into a car helps him do what needs to be done. The anesthesiologist who drove the cart to the procedure room made some pretty good car motor noise, too.

While I was rocking Paul I thought back to when the neuro-typical kids were younger and how healthy they really were. We made very few visits to medical facilities. There were the routine well baby/child checkups and dental visits. There was the time the kids were chasing kittens in the hay loft and Rene` felt breaking her arm (that was a quick visit to the ER to get a cast). There was the time they were playing high wire acrobats and Jared jumped off the swing sending it flying into Rene` nose, which could not be fixed until she was an adult. Finally there was the time Jared got smacked in the face with a basketball leaving him with a very ugly bruise on his face. That was it. There were no CAT scans, MRIs, surgeries, mounds of lab work or anything else.

None of this medical stuff becomes routine, ever. Oh, I know exactly what is going to happen and very often we get the same nurses and doctors which makes things go more smoothly, but it is not routine because if there is a need for such procedures there are complex medical issues that need to be addressed. There is always stress involved while waiting for the results and then when we get them we have to figure out how to proceed.

Having healthy kids is a blessing, being able to parent kids who have complex medical conditions is a gift. The Lord gave me the ability to deal with all of this so I do what I do for my kids. They are worth all of the long days, sleepless nights, and stress that goes along with parenting them.