Looking Ahead

There is always much on my schedule and to do list, but the month of April is going to be one heck of a marathon. I have been working on getting several things going and all of a sudden everything is a go and needs to get done this month.

I have 2 appointment at the Mayo Clinic, Rochester for Hanna.

There are 8 appointments at Gillette Children`s, Lauren is getting her braces on and Hanna has work to be done on hers so I am doing both of those the same day to save a trip. Lauren has therapy there at least once a week.

The 3 trips to the U of M Medical Center, Paul is having eye surgery.

Lauren`s CADI waiver re-evaluation.

A meeting to further work on services for Allen and Hanna (nothing figured out there yet).

A pre-op/kindergarten physical for Paul ( both at the same time to save a trip).

A transition meeting for Paul to figure out what to do with him for the next school year.

A meeting to re-write care plans ( which I think is a waste of time and tax payer money since I have been doing this on my own for years, but new laws, ya-know).

Paul`s speech therapy x 4.

Karre is building sets for the spring play and that has a schedule that changes daily depending on how things are going.

Lauren and Allen are bowling every week.

We will celebrate Easter, attend nephews First Communion, and a family baby shower.

There will be homework to monitor, people will need to be fed, and laundry needs to get done. The rest of the housework will just have to chill for awhile.

Dad will have to take some time off from work, which he is not thrilled about. THANK HEAVENS we still have PCA staff or all of this stuff could never get done.

Manipulation

We have a kid who is manipulating and it is not going over well with Mom and Dad.

We have finally gotten Hanna on medication which is allowing her to sleep YAHOO for everyone. Now she has been going to school with this "I am very sleepy" routine, but she wakes up for snack time, lunch time, recess, and all of the other stuff that she wants to do. Now just how does that work, well you see she gets attention and people do the poor Hanna thing and she is really liking this.

Due to "girl issues" she was home with me the last two days of the school week and the weekend as well. There was no tired Hanna. She was as bonkers as ever, up plenty early, scattered and needing reminders as usual, loud, impulsive, and at times had her usual nasty attitude, there was no change in her behavior. It was exactly as it had been before the medication change.

This clearly indicates that this kid is manipulating and she is getting away with it. Maybe if she is so tired at school then she will need to be tired here too, but then none of the stuff she wants will be available either.

I do not think that she will ever be able to figure out that we are always going to catch up with her crazy ideas.
"

Mittens Today!

Spring is certainly here after another Minnesota winter so we sent everyone outside, even Lauren who had to protest. She finds outside just a little to much like work or something.

Hanna was out there with her winter cap, coat, and mittens on. Karre tried to tell her to take that stuff off as she did not need them but that got her a bit rattled. Everyone else was running around in t-shirts and jeans with no jackets any where except laying on the ground in the mud.

The Plan What Plan?

I plan to get almost everything that is going to get done in the almost three hours, four days a week that Paul is in preschool, but that is not going to happen for the next four to six days as Hanna is home, the usual "girl issues", ugh.

We had meeting number three to straighten out the service plans for the kids. Paul`s is done, it is not exactly what is wanted or needed but it, for the most part is workable so we will leave it at that for the time being. Lauren`s has not even been looked at and I am sure there will be some changes but they are expected to be minor and I will get to that next month some time. Allen and Hanna are the two I am working on and at this point both of them are losing a significant, by that I mean almost all of their services.

Allen qualifies for more services then he has been receiving, there is no question about that and I am not asking for anything more then we already had, I just wanted to maintain it, but no one wants to take responsibility for paying for it. Everyone seems to feel that this is the responsibility of someone else. My opinion is that it really does not matter which fund the money comes form as it will be a mix of county, state, and federal money all of which we pay tax to provide. Just someone decide to deal with this and get on with it.

Hanna apparently is to intelligent (IQ 52) and is to capable to qualify for what she needs. I can not figure out where all of this capability is because she is not demonstrating it here. Lets just say that she functions at the ability level of a four year old most of the time and when she is having a really good day and is on task you could bump that up about eighteen months. She has many behaviors which are not appropriate at any age level including masturbating in public, stealing, consuming very large quantities of food, getting lost going to the school play ground less then two blocks away, wearing shorts when it 20 below zero, etc, etc,.

My plan had been to prepare an appeal to the state department of human services (DHS) today but I can not concentrate on such complex material with a kid screaming at me, throwing things, kicking the wall, and banging her head on the floor. Now that is my capable, IQ of 52 darling little girl. Now I have no plans for the day because what plan would even work on days like this anyway?

Tacos

Lauren was doing a homework assignment which was to take a survey about tacos. The questions were clear enough, what kind of shell, hard or soft, flour or corn, do you like and what kind of meat, ground beef, shredded beef, chicken, pork, or none do you want on it and then there was a list of about fifteen common toppings and you were to check the ones you would put on the taco. After completing this section you needed to circle what age group you were in 4 to 9 years, 10 to 18, etc, etc and circle whether you are male or female. Everyone here, Mom, Dad, PCA`s, and siblings (even Allen and Paul) understood what Lauren wanted them to do and answered the questions easily, except for Hanna who had that I have no idea what this is all about, I do not know what tacos are look on her face. It is not like we do not eat tacos around here or anything.

I slowly explained that tacos are the meal where she eats cheese, lettuce, meat, and a taco shell and since she does not like any of her food mixed together she has all of the ingredients separate on her plate. We very slowly got her to answer the taco questions ant when we moved on to the what age are you she could not figure out which to choose because she did not see the number 12 anywhere on the page and I could not get it through to her that she was between 10 and 18 so by the time we got to determining if she was male or female I just told her to circle female.

Having her fill out this simple questionnaire was a clash between wanting to participate and not knowing how because she could not remember what tacos are, and add the concrete thinking in when it came to placing yourself into an age group when all the numbers are not there in front of you to choose from.

We are having enchiladas for dinner tonight. I am waiting for someone (likely Lauren or Jared) to suggest that theses are similar to tacos. Hanna will have no idea what they are talking about, sigh.

Hanna Slept

The fact that a kid almost thirteen years old slept would not usually be earth shattering news, but for this kid, the one who has NEVER slept through the night in all of the time she has been in our family, and I am almost certain she had not done so before that time finally did so last night.

We have been working with a variety of different medications, dosages, and combinations of them for years in order to get her to sleep. The lack of sleep messes ones body up a lot so this is one of the two issues we are working on at this time. We can only take on two things at a time with her and can not move on until these things are resolved.

At any rate we finally hit the magic combination of two different medications Trazodone and clonidine (large doses of both) and then this requires Mom to get up at 2:00 am to give Clonidine again, but it worked so that is what we will do.

When it was time to get up this morning Hanna said "that medicine is almost making me sleep" and she was still sleeping when I went in there to get her. She was slow moving, almost like the average kid of this age, this morning and did not want to eat breakfast, which never happens.

I am sure I will get a call from school this morning telling me that Hanna is not feeling well and that is okay. I also realize that we will need to make some adjustments with schedules in morning and bedtime routine. We will gladly do that to get this kid to sleep, who knows if she sleeps maybe there will be some improvement in her behavior, that would be a plus worth making the changes for.

RAD In Action

Most of the world never experiences whet we did when we came home from our trip. I wish they could just one time, then just maybe there would be a better understanding of what it is like to live with a kid who has reactive attachment disorders. We had gotten home far past bedtime so we did not get the kids up but I know Hanna was up as her light was on and she was doing her singing and bouncing around thing in her room. When the kids got up the next morning and discovered that we were home they all had different reactions. All of them were appropriate except for that of the kid who has RAD.

Lauren asked about our trip, who won the baseball game, and said that she had missed us.

Allen gave me a great big hug, kept messing with my hair and saying "hi Mom". I know he was happy that we were home.

Paul was so excited that he did not know what to do. He could not decide whether to be Mom`s boy or Dad`s buddy so he just went back and forth and chattered and chattered the whole morning through.

Hanna never said anything to anyone, not hi , not how are you, I missed you, not a thing, she just plopped her behind on the beanbag in our bedroom and started screaming very loudly, "I want to watch cartoons" oh she used a few, or more like a lot of unacceptable language here, and given the way she was behaving she was going to lose watching TV for the entire day so it did not matter how much of a tantrum she was putting on. Around her everyone else was enjoying being together.

It is at these times that you can really tell that there is something very wrong with this kid. She really could care less if any of us were here for her or not. All that matters to her is getting what she wants, when she wants it and if someone happens to be in her way so be it, they will just get hurt in the process.

Back To Real Life

Okay vacation is over now it is back to reality. I have gotten the laundry under control and the kitchen back to cleaned up, well most of it anyway. Today is a put the sneakers on and run day. First I have to take Hanna in for a medication evaluation which includes blood work, which is a screaming, kicking, pinching, biting battle, but that is just the way it is and it has to get done.
After that I have to get Paul off the bus and fed and then turn him over to Dad. This afternoon I have to take Lauren to Gillette to meet with the orthodontist, dentist, and a medical person from the state department of human services. We will begin orthodontic work today, however which of three plans we will be following is yet to be determined. The orthodontist, dentist, and I are all on the same page with this one so hopefully that is where we are headed. After I get home I need to dig into the pile of mail from last week as well. There is no time to waste and ponder what needs to be done I just have to get a move on and get all of this done because there is another full day ahead tomorrow, and the next day, and on and on and on.

Time To Take A Break

I took in the beauty of the earth...
visited historic homes...
collected shells to put in my pocket and got sand on my feet...
and watched our Minnesota Twins play baseball in the sunshine.

I got to do all of that and lots more as I went to Florida with my husband and two oldest daughters. This is something we had dreamed up long ago (about 25 years ago) when we were first married. It was so relaxing to go to a sit down restaurant, order dinner, and have no one there to go nuts so that Mom has to get the food to go, to go swimming and actually swim without kids hanging on you, and to walk on the beach for hours without having to worry about a wheelchair getting stuck in the sand or a kid plopping down and refusing to move.

Jared and Trevor along with help from the rest of the fabulous PCA crew held the fort down at home. Trevor was not at all thrilled to be cleaning up puke less then an hour after we left and getting the pleasure of spending the whole day with Hanna attitude too. Jared did the cooking and they ate plenty well, but as Trevor put it Jared does not believe in eating vegetables so they had none. The kids all survived and that is what matters.

I had to take three calls to deal with medical issues that are coming up, but I guess that is just the way things run around here. There is never a vacation in my line of work as a mom of kids with special needs..

I just need to put this down, my husband says we are doing this again, but next time we will leave Rene` and Karre to hold things together at home and take the boys and we are not waiting another 25 years before we go. I can certainly agree to that idea!

Disabilities Don`t Go Away

Disabilities don`t go away just because the world wants them to.
Because budgets are being cut does not mean that ...

Children will stop being born with chromosomal disorders
Children will stop being physically, emotionally, medically, or sexually abused
Children will no longer be exposed to alcohol or drugs before they are even born
Children will no longer be in accidents or have illness that leave them with disabilities.
Children will no longer become adults with those same disabilities

It would be nice at times to have a holiday from all of this but that is not going to happen. Persons who happen to have disabilities have them always, they do not just go away. They learn to live with those disabilities. For some persons to live with those disabilities someone will need to be there to support them in the effort. With a little help they are able to be happy, healthy, productive members of society. Taking that support away from this population and their families would be stepping back in time which would be a disaster for all of society.

Thursday Thunderstorm

It is thundering and lightning and raining hard here this morning. We still have plenty of dirty snow around and the rain is creating puddles on top of it. All of this rain is making the likelihood for flooding all the more a reality. Oh well that is what happens when it a nearly spring in southern Minnesota.

Allen is clapping quite thunderously as well this morning as he gets to stay home with me today as he has his annual physical and medication adjustment appointment later this morning.

MN Help Wanted!!

This has been one crazy week. Things have been changing daily as far as what is going to be available for services for persons who have significant disabilities and needs. Please help to get the word out about this and voice your opinion to your state representatives and senators. Thank you to all of those who care enough about persons who happen to be disabled and their families to appose the proposed actions. We have already given our share and more in these budget balancing maneuvers. it is going to cost more later as this will take people out of their homes away from the families who are caring for them, PCA`s are not over paid nor are they receiving health care benefits, retirement benefits, or vacation pay or time off. They get paid the same wage all 365 days a year. These are special people who are caring for our most disabled population.

March 10th, 2010 MN-CCD Action Alert:

HF 3442: PCA (Personal Care Assistance) Program Changes

Action Needed:

On March 8th, 2010, House File 3442 was introduced at the MN State Legislature. Sections 11 and 12 of this legislation contain two provisions that will significantly affect the Personal Care Assistance program.

- The legislation accelerates the PCA program eligibility changes requiring recipients to be dependent in at least two activities of daily living to go into effect on July 1, 2010 instead of July 1, 2011 as is the plan under current law.

- The legislation requires Personal Care Assistants to pay an annual $50 registration fee to the MN Department of Human Services.

Please contact your legislators and share with them this message: “Protect personal care attendant services and stop H.F. 3442. PCA services are extremely important for thousands of Minnesotans with Disabilities, and this bill would eliminate eligibility for some individuals with disabilities and older Minnesotans, make it more difficult to find qualified PCAs, and cause economic hardship for those working as PCAs.” Please send a copy of what you share with your legislators to Rep. Hosch (rep.larry.hosch@house.mn), Rep. Huntley (rep.thomas.huntley@house.mn) and Speaker Anderson Kelliher (rep.margaret.kelliher@house.mn) If you don’t know who your legislators are, you can find out here .


Help us pack the room to show legislators how important PCA services are by attending one, maybe two, hearings on H.F. 3442 tomorrow. The first will be in the Minnesota House Health and Human Policy and Oversight Committee on Thursday, March 11 in Room 200 at the State Office Building at 2:45 p.m. If the bill is approved in that committee, it may be heard in the House Health and Human Services Finance Committee later that evening. Call Anni Simons after 4:00 p.m. tomorrow to see if the second hearing is being held and when it will be; her phone number is 651-341-7837.


Background:

On March 8th, 2010, House File 3442 was introduced at the MN State Legislature. It contains many provisions that negatively impact services for older Minnesotans and those with disabilities. You can click on this link to access a copy of the full bill.

HF 3442 Your advocacy around this bill is extremely important as we believe it may be the first of many proposals that will hurt the disability community, and we need to speak out strongly against each of these. Earlier this week the leadership of the Minnesota House of Representatives made a decision to prioritize cuts to the Health and Human Services programs in their 2010 budget proposal. It appears that their proposal will include more cuts to HHS programs then all other programs combined. The budget will be balanced on the backs of persons with disabilities and their families. Their proposal could contain substantially higher than 2.5% provider rate cuts, elimination of all new waiver slots, elimination of many optional Medical Assistance services such as all therapies, further cuts to PCA services and more. It is time to act. Over the next several week's you will be receiving multiple Action Alerts. You need to respond to them all!

Thank you in advance for your important advocacy, and for more information please contact Anni Simons, MN- CCD Coordinator at asimons@arcmn.org or 651 523 0823 ext. 112.

Exhale

After spending the afternoon trying to get services for two of my kids whose current services are rapidly disappearing has been totally exhausting and I have no services nor answers in place so I sure do not feel like anything was accomplished.

One kid totally qualifies without any reservation however. there seems to be no money in the budget, so now what do we do? However there is money available for a much more costly option that we do not really want at this time.

The other kid qualifies, well at least sort of qualifies so what does that mean? This happens to be the kid who we REALLY need services for at this time. Here again no money in the budget, but there are two more costly alternatives to consider here.

The question here is why on earth would we spend more money then need be spent on something because that is just the crazy way this all works. Is it the best solution, not likely but in reality we do need services for these kids and if we have to do things that are a bit on the crazy side then so be it.

Oh I don`t know the answers here, but something has got to get done. Now I have to deal with the kid who caused a teacher to call me two times in one day and believe it or not it is not Hanna. It is Lauren whose behavior has dug her a fairly deep hole full of trouble the last week or so. When I am done dealing with her I am going to exhale deeply and turn my very over loaded brain off for the night.

Time Flies

The weekend is over and there was so much going on that I have had zero time to spare.

Saturday I ran errands and got lots of groceries. I then went to 4:00 pm Mass and then headed to the college for Karre`s choir concert. I will blog more about that when I have a few more mintues to spare.

Sunday Karre and I worked on a Civil War project for her history class from 8:30 am to 6:30 pm. this project is something that she is really interested in but the scope of it is far greater then one week will allow to get done. She researched and assembled information all day and I typed things for her. We got a lot done but will be at it again today after school. All I can say here is that she had better get an A for effort with this one. We took time out to have lunch and shower. Then we had to get to church for confirmation practice. I had to be Trevor (he is her sponsor) he could not come home this weekend as he has mid-terms this week. We would have been back at the Civil War thing except that Karre also had forty pages of English to get read by this morning so she did that and I made school lunches for this morning and folded lots of laundry.

Time sure flies when there is really more to be done then is possible to do. One thing at a time is the only way to do this.

Put It In Your Pocket

Lauren came home from school yesterday with some really awful attitude. We are working on getting her to use her communication device more and this is frustrating for her. Once she figures it out her life will become much easier as more people will be able to understand her so we are making her do this. She got up this morning with this same bad attitude and tried to tell us that she was not going to school. I carefully explained that there are many appointments on the schedule today and I do not have time for any of this nonsense from her today. I told her to put that attitude of hers in her pocket and sent her off to school. I do not know how well she will be able to hold it together today but I am confident that her school staff can put up with whatever she drags out.

Now it is time to get going... I won`t be done until bedtime tonight. This is going to be one very long day.

One Thing At A Time

We just keep moving right along, one thing at a time.

I took two kids to the dentist yesterday, Karre and Allen. Allen is still cavity free at sixteen years, YA-HOO!! I shudder to think what it would take to do any kind of work in his mouth.

Today I have to get all of the odds and ends wrapped up in my office. I also have to go another round with medical assistance people. They have agreed to pay for twelve months (the orthodontist says it will take at least twenty-four months)of orthodontic work for Lauren,but only to straighten the teeth in the top of her mouth. They do not want the two broken teeth (the ones she knocked out seven years ago when falling on the ice at school) removed. They just want to work with them in place. Both the orthodontist and the dentist agree that you should not put braces on these teeth because they are brittle and have been traumatized and because this will make a repair that will need to be re-repaired. The other issue here is that if the top teeth are straightened and the bottom ones are left the way they are (a crowded, crooked, mess) then her bite will not line up so nothing has been accomplished in the precess. I am a mom here, my education is in psychology and social work, not medicine but it seems that I can clearly understand here what needs to be done. I just can not figure out how all of this doing things half way is going to save money because eventually this (excuse my language) half ass job will need to be done again. Lets just get it right the first time for once.

Tomorrow Paul has speech therapy so he can work on those P sounds. Then Paul and Hanna go to the dentist and Lauren has to get her Depo shot after school. I have Angie helping me get everyone where we need to get to and watch one while I do the appointment for the other and then Karre will bring Lauren to me after school. It gets a little complicated but we will get ti done. While I am at the clinic with Lauren I am supposed to be able to catch up with the doctor that is helping me with the Hanna issues so maybe we can get something done on that front as well.

An Evening Out

Paul and I had an evening out yesterday as we went to kindergarten registration. Paul has no idea what kindergarten is and he was down right confused by going to his school after dinner, but once he found his teacher and got to go hang out with her things went pretty well.

The other people there were well...

Even though the letter sent out said that this was a special evening for kindergartners to be and their parents and in bold large type it said please do not bring other children, there were plenty of them running around. The school had a plan of action to corral the kids. the school social workers took them and watched them. I guess this is an issue that they see regularly.

The Pierce family was there mom who has her ears pierced three times, her nose pierced, and there is one on her eye too. Dad had two nose rings, and a piece of metal on his tong. Then there was little guy who mind you is four or five also had his nose pierced twice just like dad.

The three chicks who sat in front of me talked the entire time the school staff was giving out the information. They obviously were not paying attention at all because at the end of it when they were supposed to fill out the forms they had to go ask what to do with them. I am glad they have the weekend planned out. I am also glad that I have listened to the registration speech at least a dozen times and can just get the paperwork done without paying attention.

There was little Miss Make-up who had a purse bigger then any that I have ever carried around and I have a pretty large purse. This hot pink purse was full of make-up, no not the fake plastic stuff that little girls carry around. There was lip stick, blush, nail polish, eye liner, and all of the rest in multiples of each. This kid dumped the contents of the purse on the floor, sat down, and started putting the stuff on. She was pretty skilled at doing so. When one of the teachers came over and told her mom that her daughter needed to load the stuff back into the purse and go play with the other kids and that her kid would not be allowed to bring this sort of thing to school , there was quite a scene. The mom started yelling and the language was not at all appropriate. Mom and Miss Make-up were escorted from the room in a rather hasty manner. The rest of us got to listen to the if your kid brings things to school that are not appropriate for school they will be confiscated and they will not be returned. speech. They are not allowed to bring guns, knives, cell phones, I-pods, etc. this is one of those speeches that is usually reserved for a later date, but I guess it needed to be made here in light of the situation.

I am amazed at the craziness that the school staff have to deal with and how well they are able to do it without going nuts themselves. I must be getting old or something, yeah I am sure I was the oldest mom in the place and I have two daughters who are older then some of these moms, but people wake up, these are your kids here. Do you not have any idea what you are doing to dthem with this behavior?

A Big A Barty

Paul likes to be read to, the same book over and over again for months on end. He was stuck on Go Dog Go (that is the book for the kid who is obsessed with cars). We read it so many times I think everyone here can almost recite it from memory, even Hanna knows a lot of it and she has terrible memory.

Yesterday Dad was watching Paul and he kept asking for "a big a barty" and when Dad called me to see what he wanted because he was tired of hearing that and couldn't`t figure it out I had to laugh out loud because for once it was not Go Dog Go, it was If You Give A Pig A Party, by Laura Numeroff. I know he has just a little trouble with his P sounds when he speaks but at least we have a new book to memorize.

Oh Yeah!!

Congratulation Rene`!!!

Rene` has been filling out forms and doing interviews for several months now and today she was rewarded for her efforts with a letter of acceptance into the masters program for occupational therapy at the University of North Dakota. Only thirty-five students get this opportunity out of hundreds who apply. This is a five year, very competitive program.

I know you will do great work Rene`! If you can lose a United States Navy ship in a hurricane, find it again, and explain that one to your commanding officer and come out a hero then you certainly can handle a masters program, piece of cake, right?

I Don`t Have A Clue

I have parented four neuro-typical kids and I really do understand when you let them do things even though you know they are not making the wisest choices. They do learn from their mistakes, they are able to take responsibility for their actions, and they are able to move on. Three examples of what I am talking about are the kid who could have easily graduated from high school with straight A`s and could have gotten more scholarship money chose not to do that so he is working as an RA and a PCA and still will find himself with loans to pay when he is done. He has told Karre that that was a really dumb thing to do. I have the kid who earned lots of money and spent it on dumb things like movies, video games, eating out, etc, etc, and now he would really like to move out and can not afford to do so, well he could but he would have to live on a really tight budget. I have the kid who really would rather not be driving my mini van around town but has not taken the time to fill out the paperwork to get a discount on the insurance and she has not come with a transcript so no looking for a car.

Now all of these kids are really well behaved and have generally made very good choices. None of them have ever smoked, used drugs, crashed up the cars,they are not irresponsible when it comes to relationships, and the ones who are of legal age use alcohol responsibly so I can say that I think we have done a pretty good job of parenting them. The issue here is the younger four kids who have an alphabet soup of disabilities. When do we let them do their own thing? How much do we let them mess up before we step in and stop them from doing what they are doing? I know that it is not okay to let them physically harm themselves or anyone else but do we let Hanna dress crazy (wear striped shirts, flowered shorts,and flip-flops and let the chips fall where they may when her peers harass her? If so how long do we let this go on? She does not learn from her experiences and will keep doing the same stupid thing over and over again. Do we let her steal ? Do we allow her to act in a sexually inappropriate manner? Do we let Lauren use her cuteness to get people to do things for her that she can do for herself? (That is a skill that she is very good at and is is pretty ingenious of her to figure out how to do this).

The dilemma here is that I clearly do know when my kid is acting inappropriately, I do know how much structure they need to function well and behave appropriately, I understand that options do need to be limited for them,and I do know that they need to be supervised 24-7 but others who have a lot to say about accessing services for them do no view this in the same way. I am always getting the "you are squashing their potential" run around. The other problem here is that my husband and I as their parents are ultimately responsible for their behavior and the consequences of it.

Oh I know what I am trying to say here but I am not sure if anyone reading this will understand it so I had better get off the soap box here.