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. :)
