Guardianship - today was the day

Today was the day--the big day in court. I dreaded it. Not sure why. Perhaps it is the same way that I feel guilty if I am driving down the road and the police is right behind me? Perhaps it has something to do with coming to terms with reality yet again?

Reality always hits. Often I prefer to ignore it and live in my own world -- that  slightly nicer, more pampered, and more me-centered world. 

Getting guardianship of my 18 year old multiply disabled child was another slap across the cheek, courtesy of reality.  

The journey with special needs is always one of acceptance -- acceptance of what is, of what must be -- NOT OFTEN of what we would like to see. 

So good bye Captain Kirk and the legendary Enterprise, along with his luck quotient which defies all odds. 

Good bye to what I thought I really wanted, and what I dreamed of.

Hello to reality.

When a child is born with special needs--for many of us--our first tendency is to think that we will just exert ourselves and become the super-parents who overcome all odds by sheer will power. We will press through with therapy, interventions, and SUPERIOR parenting, and our child will be the most brilliant  and accomplished child with Downs or autism or cerebral palsy that ever lived.

Then,  month after month, year after year, we are confronted with:  He didn't sit till he was 12 months. He did not walk till he was over two, he didn't get potty-trained till he was 13, he didn't speak till he was .... wait?? ... speech?? What speech??

There is wisdom, as St Francis says, in changing what we can change, accepting what we can't change, and knowing the difference.

The journey with special needs is all about figuring out that difference. Vive la difference!! But it is so hard to TELL the difference.

The difference more so comes with time, as we try, realize it's a lost cause (like speech, for Ben) and then we ACCEPT the Ben that is . And we learn to do so without sinking into depression or despair for each hurdle that we recognize as insurmountable. 

Accepting what is is hard, and after that, what is even harder is  learning to find the beauty, meaning, and depth in  our own acceptance, in our child, and in LIFE.  Then somewhere down the road, we grow beyond looking for beauty and meaning, and we learn to LOVE the life we have with our special child, in fact, we want it to be no other way than what it is. 

But it's not that simple and pretty. 

The cycle I described above of struggling, accepting, finding meaning, and finally loving WHAT IS, is a cycle we enter over and over again with each 'issue', sometimes each day, and some days each minute.  Like finding the humor on Wednesday morning when I handed Ben some DayQuil for his cold, and he swirled it around in his mouth and dramatically spit it out in the kitchen sink. Last year when he got braces, I spent MONTHS teaching him not to drink dental rinse. He GOT that part.... hallelujah... but this wasn't dental rinse... :) 

My child is disabled, multiply disabled, physically and mentally both, and he will remain so for the rest of his life. There will be no third naval officer in my string of sons, no summa cum laude Benjamin graduating from the University of Colorado. Acceptance, yes! Grief? Sometimes.  

I have known all that about Ben since I was 17 weeks pregnant when we named him while he was still in the womb. 

And yet there are days, hours, minutes, when the thought of living with an adult with special needs--and all that his care demands of me and my time and resources--feels so overwhelming and stressful and impossible, I simply do not want to dwell on it. 

There are other days, when I wake up to conquer a the real world that very much includes Ben and all his needs. In fact, on some days that world looks so bright and dazzling that I would not trade it with any of you for your most brilliant, compassionate, and accomplished young adult child.  

In short, my days are like yours, some up, some down, only my days have that 'enhanced Ben-ness' feature that I paid a little extra for. The rest of you just got the standard version. 

Today was one of those overwhelming days, as Ben and I got up and went to the local district court house to sit at the hearing where the judge was appointing me to be Ben's guardian.

You see, last September Ben turned 18, and I filed  that month the paperwork to become guardian for Ben. 

If you are near this process with your disabled child or with an elderly or incapacitated relative,  here are a few tips. And after that I will round out with my thoughts after court.

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Your State Judicial Branch should have all the paperwork online. Just Google " 'state name' Judicial Branch". 

Here is the link for Colorado Guardianship. 

Look for self help forms, click on Probate (not to be confused with 'probation'), click on 'guardianship'. There should be both papers to fill in and instructions on how to fill them in, along with an FAQ. I filled in all the pdfs online, then printed them. It was a lot of work, but it was not difficult work. 

Some people hire a lawyer. I would not recommend that. The process is easy, and it already costs about $800 total. Why add lawyer expenses unless your case is contested by someone and you need to fight?

In addition to filling in all the paperwork with the court, which took me almost a day (between filling it all in and getting it notarized and making copies), I had to do the following. 


1. Notify all interested persons  in the case with copies of all documents filed with the court.  I mailed them all at the post office with delivery confirmation.

2. Get Ben served with court papers to notify him of the impending action. 
I had to inconvenience a friend with this and that friend had to serve Ben the papers, sign to that effect and have her signature notarized at the bank. Then she had to send her signature to the court by mail. Ben had no clue what she was giving him. He took it home, and it is in a stack among his picture books. One of these days when I clean his room, I will file it somewhere. 

3. Get the primary care physician to write a letter documenting Ben's incapacities. Well, guess what? Doctors love writing those, it's so much fun. I basically sat down, listed all disabilities from emotional to physical to mental, wrote a paragraph about each. I wanted to make sure that I sounded 'doctor-like' enough, so I went to  a website to get all the proper diagnosis codes. put it in a document with doctor's name and address, and printed it. Where I was unsure of how to sound doctor-like enough,  and made an appointment. He signed after glancing over it and thanked me for doing all the work for him.

4. Pay for a court visitor to inspect you, your home, and your intentions. Ours was nice, but pricey. She charges by the hour, and she talked a lot about herself, which irritated me because she was doing it on my dime.  Other counties in Colorado don't do it by the hour, they have a flat feel, like $100, whereas I paid several hundred for her services. She wrote a good report, though.
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So this morning, Ben and I show up in court. This was his handsome outfit for the day.

We sit down, judge comes in,  we stand up again. Judge asks almost no questions (it's all in the report). I was so grateful that he did not ask me to list (as I have umpteen times before) the multiple deficits that Ben has. All that was in the report, which the judge had read ahead of time. It was pretty much a slam-dunk case, and all is done. I have my guardianship papers, and really nothing changes. We keep on living the way we already are.

Those of you who know me know that I am not often given to melancholic indulgence, but I did feel a sudden rush of sadness come over me when the process was over. The whole event, somehow, lacked a certain ceremony that might have made it feel whole or solemn. 

We walked out after saying 'bye and have a nice day' to the  judge, and it felt like ... 'so what?'  It was that institutional feeling that you have just been run through a papermill,  and Ben had just become another number among people that the state keeps its eye on. And so he is.

So, 'what now?' Well, nothing, really. Go home, proceed as always. And let's not forget to file my annual reports on Ben's birthday.

My son is 18, he has (according to the court) Down syndrome, low IQ, and significant medical needs. Based on that, he will never be an adult in his own right. He will always need someone to administer his money, provide his food and shelter, and make all his decisions for him (or most, or many, or some ...??). That someone is me. And I must accept it, find meaning in it, and learn to love it. By God's grace, I pray I do it well, compassionately, thoughtfully, and selflessly -- for Ben's sake.

And tomorrow, we will be back to normal. :)

Benjamin - the artist

Did you know that Ben is an artist?

Ben is 18 years old, and not only is he an artist, in many ways his life is a work of art. He has his own special style of dressing, his ties and bow ties, his shirts. He loves hats, It is very important to his self-expression and daily functioning that he wears the pieces he puts together, so he looks the way that he best feels expresses who he is.

His life is a mosaic, it consist of fragments--some with sharp corners-- of health, illness, ability, disability, joy, sorrow, comfort and pain. Some events on their own may not make sense, the pain is too intense, the loss too severe, but as a whole, when we step back and look at his life --- well, this piece of his, which I call the wheel of life, may express it best:

I ain't no art critic, but to me the balance of colors, the subtle pastels and the grays, the big fragments, the little pieces fit together in a beautiful whole that inspires hope with its beauty. I love this wheel and it hangs in our livingroom right next to Mirabel's Stair Case in Provence. Perhaps you can see why.

Ben's first major introduction to art in high school has come from a wonderful pottery course he has taken a couple of times at Broomfield High School:

We put tea candles in these and use them on our dining room table.

I think the fruit bowl is my favorite, handy, useful, and beautiful all at the same time.

We keep our Holy Water in this pottery basket.

Ben's own tea mug, It is huge.

Pandora's Box - so named by Nikolas Jaqua, who received this for Christmas last year.

The pinnacle of his pottery work -- Ben's teapot.

Watch the colors in this mosaic:

There is both storm and calm in this paint on canvas:

Colorful and large, water, sky, and tree. This one is in Ben's room.

Ben also took a graphic arts course:

Animals in the Arctic

The MOVIE poster, and ...Yes, he is ONE IN A MINION :)

The artist's self-portrait in quadruple.

Self-expression is extremely important for those who struggle to communicate with the mainstream of society. Ben has a strong need to express himself. Art is, perhaps, his most effective medium. He is meticulous with his art and can spend hours on details. He will not quit until it looks the way he wants it to look. Yes, he also has the frustrated artist's temperament that growls and throws his hands up in the air when the medium will not comply with his intents, but he sticks it out, and you see the result -- Beautifully done, thoughtful, detailed, meticulous, expressive pieces that bring out, not just the almost-non-verbal young man that most of the world smiles at but often ignores. Here is a deeply-feeling, compassionate, and alive human being whose works in clay, color, and on the screen give us a glimpse into an intricately artistic mind and soul.

Thank you, Ben!

The best shot of Ben, ever!!

[Michelle took the top and bottom pictures of Ben at school and sent them to me. I took the others with my iPad (next time, I will use my camera instead for higher quality)]

Turning 18

Ben turned 18 in September, and the list of paperwork to take care of since then as been staggering and it is far from over.

I am hoping that this laundry list of things to do might help someone else who is not quite where I am yet. And for those of you who read this blog for entertainment or interest or awareness or out of sympathy... I wonder if you will make it to the end of it.

Before I go into details of my list, let me say a few words about fatigue related to expectations when it comes to special needs. It is not necessarily the processes or the applications for this or that that tire a person. Ben needs long term care, he needs medicaid, I need to have guardianship of him, and it would be really nice if he gets Supplemental Security Income. All those things are GOOD once they are in place. -- I think for me it's accepting the reality of all the things that Ben cannot do and never will do (now that he is 18) combined with a life long expectation (from the time I was probably 12) that once my kids were all out of the nest, I would be done with all the caring for and providing for persons, and actually more autonomously looking towards another 15-20 years of work and then a comfortable retirement with travel and interesting things to do before ending life.

The prospect of having a person to care for ever, always, until one dies can feel daunting. And I am not saying it to get sympathy or to complain, but simply because this territory is unknown, one is getting older and more easily tired, and the 'endless school summer vacation' that is in store for Ben as he finishes high school feels both scary and tiresome... and I am not even really in it yet.

Looking at Ben as a dependent is something one can accept because I see daily all the things he cannot do for himself. I cannot even describe the process of guardianship to him in any way that he could possibly understand the concept of filing papers with the court, let alone what responsibility for him entails, or what it means for me in terms of authority if I do not have that guardianship. All those concepts are forever beyond him. --- Heck, I cannot even drop him off across the street from school and let him cross the street on his own since he is not aware enough to cross a residential street with care. He cannot be trusted with a house key, he can never be home alone, not even for a short time. I have tried it, and if I am gone 5 minutes, there is no telling where he might be when I return.

Now, I have to do the following for him now that he has turned 18 (in addition to the usual stuff I do, including doctors and orthodontics appointments, taking him to school, providing care for him any time I am not with him.)

1. Apply for guardianship for Ben
2. Apply for medicaid for Ben
3. Apply for Supplemental Security Income for Ben
4. Finish process of getting long term custodial care Medicaid Waiver for Ben (He is approved, but the meetings and the processing of all the info is a long trip yet to be completed)

The goal is that by next March or so I should be done with all the paperwork, meetings, petitions, etc and should be settling down to 3 reports per year to 3 different authorities who have to hear annually from me on how Ben is doing.

Guardianship

Many of us with children who are developmentally disabled need guardianship or some arrangement of authority of our kids after they turn 18. Techincally, once they are 18 they are autonomous, and where I have run into issues (and it's only been 1 month) is in getting access to his records (medical, school, SSI application, ANYTHING!) If there is no permission from Ben on record, saying I can look at his stuff, I just can't.

I paid $125 to go to a class to learn how to file for guardianship. I figured it was cheaper than an attorney, and it came recommended from many sources. As it turned out, it was a waste of money, first of all because the lady who was giving the 3 hour seminar was 1 hour late and talked really fast to cover 3 hours worth of materials in 2 hours. Secondly because the material is readily available on the state web site with a clearer 'how to' instruction set than what the Guardianship Alliance provided in their 2 hour (3 hour) talk.

State of Colorado, Probate Forms - scroll down for guardianship

In addition, I have paid $164 to the court to file, and I expect to pay another $300 or so for a court visitor to come to my home in the next month or so to inspect me and my home to make sure it is a suitable place for Ben to live in.

I will write more after the hearing in the Probate Court, which I am waiting for the court to call me back to schedule.

Medicaid

Ben qualifies for Medicaid at 18, ... the kind of medicaid that is for health insurance. However, it takes 2-3 months to process (thanks to the Federal Government of the United States, it is impossible to apply so the Medicaid is in effect on his 18th birthday. You apply after his birthday, usually in conjunction with Supplemental Security Income and the process requires an in person interview, letters from doctors, etc.  It is a chore to pull together the documentation for this to fall into place.

Apply for medicaid here.

Long-term Care

Long-term care is care for Ben after he is done with school (when the eternal summer vacation sets in), and I still have to go to work. He has been offered two different waivers by the state of Colorado, one for his physical disabilities and also one for persons with developmental disabilities. We will go with the latter since I need custodial care more than I need a nurse in the home to care for his physical disabilities.

Next week we are doing the SIS evaluation for the long term care. It is a 2-4 hour question and answer assessment meeting where I go with Ben and as many persons as I want along to help assess, to the county intake office to sit and answer a seemingly interminable list of questions about every possible need he might have. This link explains it.
Supports Intensive Scale

This assessment is done once for all and is in place in Colorado for him until he dies. It is extrememly important that this assessment be done well and be done properly. The hints I get is 'think of his very worst day' and answer according to that. Once the SIS number defines the 'level of need' he has, that establishes how much money the state will cough up for him each year, and that is the money that will be used annually for his long term care .

After the SIS assessment, IF the Medicaid has been approved (2-3 months, remember??) we do an assessment that determines what his actual daily needs are for custodial care, and then we contact service providers which will get paid directly by the state (not by me) to do the care taking of Ben. That might involve a day program that is somewhat academic on some days, it might involve some supported employment on other days. And on some days it may simply involve someone coming to the home to watch Ben if I am away. -- What I hear from other people is that it is difficult, even with the long term care waiver, to find providers who will work for the wages that the state offers on its long term care waiver. I have yet to test that for myself, so we shall see what it looks like in the spring when all is approved and we are selecting service providers.

Once that is in place (waiver come through, paperwork filed, service providers selected), I have to file paperwork each year for an annual eval for long term care to make sure that the services in place work for him each year.

Ben  might get comprehensive long term care (some group home where he lives apart from me) when he is closer to 40 (he is on the wait list for that) at which point I might be of an age where I can no longer take care of him myself, or where I don't want to. ... or not, who knows?

All this takes a tremendous amount of time, and funny enough, all these state and federal agencies, while they speak well enough with each other to know whether Ben has been approved for Medicaid health care, they don't speak well enough to each other to share any other document, so filing something in one place does not at all mean that it is accessible to anyone else.

I am deeply grateful, I should say as I end, that he has long term care. Just a year ago, the waiting list for long term care was 7 years or so, and this year it is whittled away as more money has been allocated to take care of the developmentally disabled in Colorado. That is wonderful.

What isn't quite as wonderful is the combination of endless summer vacation and endless paperwork ahead, along with the endless dependent care. I do confess that somewhere in my little brain of much fluff, the hardest thing to adjust to is knowing that one will always have a dependent.

Now, I will end with this very different thought. Ben is very definitely a dependent, and through no fault of his own he CANNOT take care of himself, and I am happy to do so. But as I have matured over the years in my 'growing up' with Ben, I find myself very narrowminded and intolerant of fully grown adults of normal intelligence who have made themselves dependent on either other people who support them financially or on the government.  It has been such a battle to get for Ben what Ben needs, and yet Ben has such a drive for independence in him and such a desire to do things for himself. For example this morning, he put on shoes with laces and rather than wait around for me to tie them, he spent about 10 minutes trying to arrange the laces in such a way that he did not need me to tie them for him (becaus he really cannot tie shoes himself). -- He TRIES so hard, and he works so hard to not have to ask... and I think, if  little man like Ben can so much try not to bother others and not to lean on others when he has so obvious needs, it seems shameful to me that some of us adults have grown up in a spirit of dependency, never emancipating ourselves fully, always dependent on someone else to pay, to get us out of whatever messes we have gotten ourselves into. What a waste of ability and good intelligence when someone like Ben would have been so happy to have had those abilities but just had the misfortune not to be born with them.