Friday, December 25, 2009

Celebrating

We have celebrated Allen`s birthday and to his delight we got to sing "Happy Birthday" again the next day for Jesus.

We have plenty of wet heavy snow, the kind that clogs up the snow blower, so most of the gang went outside to shovel and clear things out in the afternoon. Paul was out there and he came in totally soaked. He was tired and ready for bed with no problems though.

Grandma and Allen were playing chase because she took one of his stuffed animals. Grandmas can move pretty fast when they want too. The two of them also played a game of air hockey.

We are going on vacation in a couple of hours. Lauren and Hanna are staying home with PCAs. We will have no girl drama for nine days I as well as everyone else is looking forward to no biting, hitting, kicking, pinching, scratching, or screaming. Those PCAs who are staying with them are appreciated oh so much! They are a valuable part of our team and unless you have kids like this you can not really understand how important these people are. As for the PCAs who are coming with us to watch the boys we love you too.

I am outta here. I may blog while we are soaking up some sun, that is if I can figure out Karre`s laptop.

Thursday, December 24, 2009

Our Christmas Boy


Sixteen years ago today a very special baby boy was born. He came to our family when he was four years old weighting 19 1/2 pounds, wearing size twelve months baby clothes. He was still sucking his thumb and grinding his teeth which made an awful racket that could be heard everywhere all day long. He is now a really sweet young man who has a great sense of humor, likes to work, and enjoys donuts too.

Trevor found a Mylar balloon that sings "Happy Birthday" when it is shaken. Allen is thinking this is really the coolest thing. I wonder if he will enjoy the Sponge Bob bed sheets will be as much fun?

Happy Birthday and have fun celebrating in your own way!

Wednesday, December 23, 2009

In Less Then An Hour

The school break, Christmas vacation, school holiday, or whatever you want to call it begins here in less then an hour. I am enjoying the last few minutes of peace. I am ready to empty those backpacks full of goodies.

I put the insurance hassles away until next year. The people who are supposed to be helping me get that all figured out have left their offices anyway. The pile of paperwork is on the back corner of the desk and there it will stay.

Trevor and I went to get milk and bread as we needed to stock up on that stuff for the holidays and I guess to weather the storm as well. I got six gallons of milk and I am sure we will be out in a couple of days. It is amazing how fast food gets consumed when everyone is home.

Rene` and Paul went to pick grandma up. She is spending the next couple of weeks with us. Are you ready for lots of noise, busy bodies, and fun Grandma? Leave your napping blanket at home because there is no time for that here.

Dad is at work trying to get three days worth of work done in one. He will be ready to relax when he gets here.

I have to get everyone showered later tonight and then tomorrow celebrating begins. All Allen ever wants for his birthday is to go see the Sponge Bob decorations that two families put up in a neighboring community. If it snows to much we may have to all watch a Sponge Bob movie or something. I would much rather just go look at the lights myself so snow just go away for a week or two.

Tuesday, December 22, 2009

What Is It That I Am Supposed To Do Anyway?

I have five, yes really five insurance issues that are working there way through the system for three of our four kids with special needs. These things just make me more nuts every day. At this point there is a communication device that is not going to get paid for (we are on appeal #3), this after thousands of $$$ have already been spent figuring out what is needed. To many days to count were spent figuring things out and an endless stream of paperwork has been filed. The lack of this device is very limiting in what options will be available for Lauren as an adult. When people do not understand her she gets very frustrated, which I do not blame her for doing, but this frustration leads to behavior issues.

Lauren has two wheelchairs which insurance paid for, which are both needed. Her manual chair helps her to work on her upper body strength but she is only able to propel this chair on level surfaces. Using this chair helps with her scoliosis and we have worked for years and years and spent thousands of $$$ in therapy, at school, and at home to get her strength built up. The power chair gives her more over all independence but when she is using it all of the time she loses her strength, what was gained in months of therapy is lost in a matter of two or three weeks. The problem here is that insurance now will only service one chair. We have decided that they will service the power chair so now she is losing all that we have worked so hard to gain. In the end this is going to cost big time in future medical bills.

I also have the eye glasses revolving door going with Paul. If they would just buy the right glasses in the first place it would save them lots and lots of money. Insurance will not pay for the flexible frames so now he is breaking his glasses on a regular basis, lets just say far to many times to keep track of. Needless to say when they are broken and we are waiting for parts to repair them they are not on his face where they need to be. It is kind of funny because now at the glasses place they are saving all of the spare parts and keep them in his file so when they bring the file out pieces are clinking and clattering as they fall all over the floor.

There are two more issues that are just as crazy but I think this is a pretty good description of what I get to deal with every single day.

When I asked a social worker what to do about the concerns for Lauren she simply told me that we were doing a super job with her and there is nothing they will help with even though she qualifies for waiver services. Well its great that we are parenting well but if these kids can not go out into the world and live there own lives eventually then it is all for nothing.

A public heath nurse told me today that we certainly do need the equipment but it is not going to happen until it is to late. Now what the heck does that really mean?

I don`t know any more what it is that they want me to do? Do they want these kids to be productive members of society as there dad and I want for them or do they want them to remain in some sort of state of limbo for the rest of there lives? That certainly seems to be a sad state of affairs as far as I see it. Do they want us to work with the kids to help them gain whatever it is they are able to, if so then they need to help us provide for their needs. I have no interest in spending my time on therapy,or dealing with kids who are not finding therapy very much fun if what they have gained is not going to be used.

One worker told me that we could afford to just handle these medical bills ourselves. Are you kidding me, we have to put food on the table, clothes on their backs, and pay for educating eight kids here. This family has sacrificed a great deal to have these four adopted kids. These kids are unendurable and there needs are so great that even wealthy folks would find these bills to much to handle.

Pretty soon something has to give or this mom is going to go totally bananas here.

Sunday, December 20, 2009

Gifts For Mom




I got all I want for Christmas a little early this year. All eight kids are home for a couple of weeks. The dinner table is full, noisy, filled laughter and great conversation (that is with the members of the family who can carry on a conversation) and for those who have no clue what we are talking about they have an opportunity to join in and add something that is totally off topic and that`s okay too.

After lunch Rene` and I took Lauren, Hanna, and Paul sledding while Dad and Jared cleaned up the kitchen (those two never do that) and Trevor helped Karre with some homework that she wanted to get turned in early for extra credit. I am not sure that she needs extra credit in chemistry but this mom never complains when they are getting their school work done.

Sledding is difficult for Lauren but we helped her get up the hill.

Hanna really enjoys it and can slide down and run back up more times then all of the rest of us put together so she used up some of her endless energy.

Paul did not want to go down the hill so he got out of his sled and started screaming and then he plopped down in the snow and rolled down the hill. After that really big scene he settled down and went down the hill with me a couple of times and then he went by himself . Rene` and I got a workout hauling him and Lauren up the hill. The more we walked up that hill the slippery it got.

We had a great time and were out there much long then I had expected. It is a wonderful, Minnesota,Sunday afternoon in December when it is in the mid twenties, there is no wind , and there is freshly fallen snow for sledding and then a warm, clean kitchen, and hot chocolate to come inside for when you are done at the hill.

This is all I need for Christmas this year!

Friday, December 18, 2009

It`s Coming To An End

This year is coming to an end very quickly. Things are pretty much in order so that we can relax and spend some time together later next week celebrating birthdays and Christmas. I still will need to get bread and milk, but have all of the other shopping done. I can not shop for gifts in the after Thanksgiving rush it just bothers me. I have thought out my list long ago so everything is wrapped and ready to go.

Rene`, Jared, and Karre are doing the baking and cooking. I will be in charge of the clean up I`m sure but I enjoy letting them do their thing in the kitchen. They are pretty good about letting the other kids help so they can have some fun as well. We will have plenty of good things to eat.

The youngest four kids wrote letters to Santa Claus, with Rene`s help last night. They were really cute. Lauren was trying to be a topical teenager but she does not quite have the skills down. She wanted shoe strings, lots of candy a cell phone, and a purple sweatshirt.

Allen wanted Sponge Bob and that could be anything from t-shirts, to movies, or just a picture cut from a magazine. He really is not particular about things.

Hanna had an interesting list. She wanted two blonde Groovy Girls. I asked her about that and she told me that she wants to be blonde like the other girls, the ones that she thinks are her "friends". Hum, maybe she needs to work on liking herself and people who are like her a little more. She has always insisted that she is white. She also wants Santa to get her "to follow the rules so she can have fun". Well I think that she is going to have to solve that one for herself. The last thing she wanted was 100 strawberry candy canes. There is no way that is going to happen either with all of the orthodontic work in her mouth. At the end she wrote "Santa do not eat all of the cookies in the world save some for hungry kids". Hopefully she will not remember what she had asked for. There is a good chance of that happening as she has such a poor memory but the things that we would prefer that she did not remember are the ones that usually stick and then we could be in trouble here.

Mr. Paul wanted mommy cars and daddy cars of course, since he is obsessed with those things it was no surprise there. He ended his letter this way "Merry Birthday Baby, Love Mommy`s Honey Boy. Now that just about covers it in total sweetness for Santa and Mrs. Claus.

Tuesday, December 15, 2009

Inclusion

Yesterday after school Hanna had lied about something and as usual it was something that she did not need to lie about at all because she knew that I knew the truth anyway. She does this stupid stuff many, many times every day and apparently Mom and Dad and once in a while older siblings are the only ones who seem to catch her at it and then there are consequences for her behavior. At any rate she was having one of her kicking, screaming, destroying anything in her path meltdowns, everyone needed to be fed, and Karre and Lauren had to be at the college by 6:30pm for their holiday choir concert. Karre and Dad helped to get some dinner together, most of us sat down to eat, and the girls got ready to go . The plan had been that Dad would stay home with Hanna, Allen, and Paul and I would go to the concert. We stuck with that plan after much discussion and adjustments. I got Hanna`s pajamas on as much as I could without any cooperation from her.

Dad could have used help in dealing with her but I am sure glad that I did wind up going to that concert instead of sending the girls alone.

Karre is singing in two choirs this year and she did a fine job as expected.

Lauren participates in choir in the classroom. We do not have her sing in the concerts (have you ever heard someone who has a severe speech impairment sing?) so she hands out the programs which is fine and she handled that well. The issue here is that when she looked through the program and she found her choir, her name was not listed in the program. I was pretty sure we were going to have tears right then and there. I told her we could talk about it when we got home. She was able to calm herself down and sit through the rest of the concert. I am so very proud of her, she has grown up enough that she can behave appropriately most of the time and this is one of those times when she really did do a super job.

This leaves me needing to advocate on her behalf and teach some school personal about INCLUSION, what part of that is so difficult to understand, just put yourself in the place of a sixteen year old whose opportunities to participate are limited by her disabilities and then when she can participate on some level that is taken away from her because someone did not stop and consider the outcome of their actions. Putting her name on that program with those of all the other kids was all it was going to take to include her, now is that so complicated!

Monday, December 14, 2009

Question #1

We have two questions that we are pondering and need to resolve shortly. They both concern Paul our gorgeous almost five year old. I have decided to deal with them one at a time because that is all my very full brain can handle

Question #1 is should he go to kindergarten in the fall or remain in preschool another year? There are goods and bads to both answers here. I see this as one of those things where you are darned if you do and darned if you don`t

He will be five the end of this month therefore age wise he falls pretty much in the middle of the kids who will be in kindergarten. Physically he is rather small and given the size of his birth parents and the fact that he has FAS he may always be small so he will have to learn to live with that.

Academically he is no where kindergarten ready. In this area another year of preschool may do him some good. On the other hand it is not likely that he will ever catch up with his peers in this area and so why worry about this in the first place?

Preschool is only half day, four days a week. I think he is ready for and needs more structure to his day so an all day program that kindergarten offers would provide that. If they could make his preschool program all day (we were able to do this for one of our other kids) but with budgets and staffing cuts this may not be possible. Although he will pretty much need the same services either way.

I really like the preschool teacher he has and has had for the past two and a half years. However if he remains in preschool there is not guarantee that he would be able to stay where he is even though they have his needs figured out and he is doing well there.

Socially he could really grow spending another year in preschool. They are moving at a pace that he is pretty comfortable with and he is finally learning how to play st least some of the time.

I am certainly ready to have him in school all day so I could spend some time doing some other things. I have had at least one infant, toddler, or preschooler at home for the past twenty-four years and I think that it is about time I retire from that phase in life.

With all of these things to ponder I think my brain will get a pretty good workout before this one is settled.

Sunday, December 13, 2009

Half

I am not sure if our house was half full or half empty late yesterday afternoon and early evening.

Rene` and Trevor are busy at school studying for finals. Don`t study and worry about them to much, I know you both will do a great job.

Jared was at the girl friends house.

Lauren was with a PCA.

Paul was on sort of a play date with another little boy.

That left me, Dad, Karre, Hanna, and Allen here for dinner last night. we all sat at one end of the table together. The other end looked a bit out of sorts sitting there empty. It was very quiet as Hanna was in one of her rather pouty states where she is not talking to anyone but that is just fine because it is better then the other extreme she has. Allen does not say much at the table unless he wants milk or something. That left the rest of us to carry on a regular conversation with no one interrupting, spilling anything,or bothering anyone else. It was nice for a change but it would take a while to get used to dinning in such calm all of the time.

Thursday, December 10, 2009

It Is Under Control

I took Paul to the neurologist today, yeah I know another appointment. There are lots and lots of them with these kids.

Paul`s EEG showed very normal activity, he has been controlled on medication for four years and has shown no signs of seizures. That all indicates that he has grown enough and his brain has healed enough for us to begin a long process of slowly taking him off his seizure medications. The whole thing will take six weeks but if he goes without a seizure during that time chances are very good that he will be seizure free for life. There is a small chance that he will have seizures again but we will just say lots of prayers, watch him closely, and see what happens.

Once we get him off this medication we will need to reevaluate his behavior, mostly due to FAS and see if we need to do something else with medications. As it is the seizure medications are supposedly calming him down, but he is far from calm, quiet, on task, or any where near age appropriate.

Well here we go on another adventure.

Wednesday, December 9, 2009

Snow Day

Just before 6:00 this morning the cell phones, house phone and the email were all activated with the automated message from the school alerting us that there would be no school today. That sets the routine off and there is one kid here who can not handle that at all.

Karre got to sleep in (if you believe that anyone can sleep with all the racket around here) until 8:00 am and then she will work as a PCA for the rest of the day. She wants the extra hours so no school does not bother her at all.

Lauren will watch cartoons, play cards with anyone who will play, and help me if I ask her to.

Allen is so perfectly happy with being home. There is never any complaint from him. We might even find a Sponge Bob movie for him later.

Paul will play with his cars and chatter to everyone even people who are not listening to him all day long.

Then there is the matter of H-A-N-N-A who is really mad that there is no school today, like I made it snow and blow, and I called off school just so that everyone could listen to her nonsense for the entire day. Even if you never believe me I would rather have you spend a few hours out of here just to give me a break from this nonsense, I am not sure why she is so excited about going to school this morning since yesterday she got in trouble fro being rude to some people at school. I guess she has already forgotten all about that matter.

As Paul told her this morning, "Hanna will you stop plainin, please".

Tuesday, December 8, 2009

Keep Doing Whatever It Is....

I am not sure what it is that we are supposed to keep doing, but that was the resounding message from the U of M specialists that Paul saw yesterday. He needs new glasses not because his vision issues have gotten worse, it is quite the opposite, it has improved quite a bit. His traumatic brain injury causes him to process the things he sees differently then the way most of us do it. What is it that we are doing right ?

He wears a patch over his better eye two to three hours a day in order to get him to use the other one.

He is in occupational therapy once weekly to work on eye-hand coordination and does those same things every day at home.

He works with a vision teacher who comes into his special education class.

Other then those specific things we treat him as much as possible as an average four year old, provide food, clothing, and shelter for him, and probably more important than all of that is that he is our precious little boy whom we love dearly so we will keep doing whatever it is we are doing right.

With all of that great news I now need to go round 896 or whatever it is with insurance to try to get them to pay for glasses that he will actually keep on. If they only had some common sense they could save themselves a lot of money too. Then when I get done with that I need to schedule surgery so they can shorten the muscle of his weak eye to get the two eyes to work together better, help with his depth perception, and get his appearance looking better.

Monday, December 7, 2009

Moving On

It`s Monday and the week ahead looks to be a busy one. As soon as Paul gets home from school we are headed to the U of M Pediatric Eye Clinic for Paul`s exam. He is doing well so I don`t expect anything out of the ordinary with this appointment. The thing at this clinic is that that are very, very slow, always running far behind schedule and they really to not get very hyper-active little boys. It is the best place to deal with the vision issues he has so we just have to l put up with the garbage along the way.

We will stop and get groceries on the way home as it sounds like the weather could be a mess by tomorrow afternoon. We can`t run out of milk and toilet paper, ya-know.

Tomorrow the special education kids are supposed to be going on a special shopping trip. Lauren has been talking about it all weekend and if they do not go we could have trouble in the making. She could care less if it is snowing she has plans and that is that. Dad told her this morning that she had better hook a snow shovel to the back of her power wheelchair just in case she gets stuck.

Lauren`s answer to that, "Dad you are crazy this chair can drive through anything".

Sunday, December 6, 2009

Out For Lunch

Allen took his Mom (that`s me) and Mum (his birth mother) out for lunch. He is a pretty sweet almost sixteen year old who never wants or needs anything so I figured he could spring for lunch for himself and the two of us. He has lots and lots of allowance saved up. He enjoyed eating of course. Mum enjoyed spending a couple of hours with him, telling him how grown up he is and how much he has grown, actually he has not grown at all for more then two years but I did not bother to fill her in on that. I sat and listened to her as she worried about her future and I totally get it, she has much to be concerned about.

She has two hours of services provided through her county each week to help her schedule her appointments and work hours, manage her budget and bill paying, buy appropriate groceries, and plan out the meals so that she can prepare them and make her food and money last throughout the week. As of January first she is losing these two hours of help which she REALLY needs. She is very concerned about all of this and I am sure she will struggle a great deal trying to function on her own. If she fails or more likely then not when she does there goes a tax paying, working, home owner, member of society who will then require services which will cost much more then those two lousy hours each week are costing both in $$$ and in assets to society. Mum has stayed alcohol and drug free for nearly eleven years now and I am really proud of her for that! Her intelligence is questionable and she has FAS (yes, she finally was diagnosed). If only we lived closer I would spend two hours each week keeping her on track, It would be time well spent. Some times just a little assistance goes a very long way and this is one such example of that. Sigh, oh maybe that should be a REALLY BIG SIGH!

Thursday, December 3, 2009

Running In Circles

No appointments today so I will try to catch up on the laundry and vacuum.

I also need to do some running in circles with insurance. Our pediatrician and a speech therapist form the children`s hospital had collaborated to fill out the mountain of paperwork needed to request a communication device for Lauren. The main reason for this is that anyone who is not familiar with her can not understand what she is saying and even those of us who do know her well are often asking her to repeat things many times over in order to understand. That kid has a lot to say and it frustrates her to no end when people don`t get it. Anyway the insurance approved the piece of equipment needed for her to communicate, however they did not approve the software needed to make it work. Does that make any sense at all? What good is the device without the software. This is one of the many arguments that should not need to take place if only people would look at the whole picture the first time around.

Sometimes I feel like those clothes that are spinning in the dryer, just going around and around with no end in sight.

Wednesday, December 2, 2009

My Honey

It`s Wednesday so it`s my turn to wait outside with Paul for his bus to arrive. This morning he was chattering away as he always does.

Paul said "Dad is your honey".

I replied "he sure is".

Paul while hopping "I am your boy honey".

I responded "you can be my boy honey, forever and ever".

Paul still hopping around "I yove you Mom and I hug your mommy car too:.

It is sure nice to have adopted kids who are truly attached. They are so easy to love and so much fun to have around!

Tuesday, December 1, 2009

IEP

Yesterday I went to the last IEP meeting of 2009, at least the last one scheduled. It went pretty much as usual. Our kid who has tantrums and meltdowns daily, screams for hours, tries to hurt herself, those around her, and destroys property all of the time, the one who steals, lies, and cheats constantly, the kid that is not trusted at all and needs to be watched or shut in her room with an alarm on it is "a great kid", "a wonderful student", "polite", and get this "very will behaved" at school. They have no clue what a ticking time-bomb they are dealing with herr. I really tried to give them an understanding of what this kid is really all about just in case she blows up on them. I am not sure any of it sunk in though. Some people will be shocked when it happens and eventually it will.