A Confession

(Inspired by a writing exercise in my special needs writing group.)

 

Domestic pain can be searing and it is usually what does us in. It is almost indigestible. ~ Anne Lamott

Dear God, 

Hear my confession! I was here last month. Same story, second verse, much the same, an not much worse. But not much better either. 

"Sign the book," Ben demands in his non-verbal way by putting it on top of my bowl of oatmeal, pen attached. 

"No," I repeat. "Ms. K. Said she was out Thursday and Friday. Today is Friday, there will not be anything to sign. Put the communication book back in your backpack, we need to go, or you will miss the school bus." I push the book across the dining-room table. 

He pushes the book back towards me. 

"Ben," I says, "it is time to go." I shove the book in his backpack, yank up the zipper. Then I guide his reluctant footsteps out the door, down the stairs, and into the car -- his face, downcast, scowling, refusing to look at me. 

"It's the OCD, it's the Down's", I think to myself. "Every morning has its routine. One of the routines is for me to sign the school communications book during breakfast, then I hand it to him, he reads what I write to this teacher, nods with a smile, and puts the book in his backpack -- but not this morning..." 

We wait at the school-bus stop in silence. No hugs, no "I love you"s or goodbyes when the bus pulls up. 

"Poor sub in his class room today," I think to myself as I drive down the road towards Lakewood. But... Why did I pick this battle? I could have just signed the #@%& book. I could have written anything in there, even if the teacher did not write any notes to me yesterday. If I had done so, our morning would have turned out differently. Why didn't that even occur to me? 

And then... the usual conflict in my mind -- the familiar spat where half of me wants to accommodate his OCD habits and the other half of me wants to stretch his flexibility -- begins to run in its familiar grooves. When to push, when to yield? For the next twenty-three minutes, as I stop-go-stop- go down Wadsworth Parkway, I feel like a louse. As Anne Lamott says, "Domestic pain can be searing and it usually is what does us in." 

Fast forward to Saturday night ... Ben opens his backback after a weekend sleep-over, and the first thing he hands me is the $#@$& communications book. 

I sigh, but this time I am prepared to sign. After all, it really doesn't matter, does it?

Ben flips through to the very last page, and holds it up to my face -- close, very close. I grab my reading glasses and pull the book out till I can focus.  

Entry -- Thursday: Ben had a great day, we made muffins. Signed Ms. Miller (substitute teacher).  

Entry -- Friday: Ben enjoyed frisbee and a math sheet. Signed Ms. Larson (substitute teacher).

Yes, my son has OCD and he has Down syndrome. He likes routines. But ... He is so much more, and I do not always believe or remember that. When Ben acts, sometimes I see OCD acting, or I see Down syndrome acting. 

When he looks at me, what syndrome does he see? What label can explain my inflexibility, my blindness?  

God have mercy on me, and help me 'see' -- really see -- so I don't inadvertently inflict pain where none is needed, not for him, and not for me.   

--- Amen. 

 

Meaningful Activity for the Developmentally Disabled

What constitutes meaningful activity for a person with disabilities?

A friend of mine reported coming home to his disabled son. My friend greeted his son, cooked dinner, and then kicked his feet up with a book to relax. The disabled son just sat on the couch and stared at Dad until Dad was done reading and ready to entertain.

Meaningful activity is difficult for many of us to engage in. How many so-called typical teen boys get out of school and spend the rest of the day on video games? How many of us waste untold hours on Facebook, Twitter, or just browsing the web? How many of us watch poorly written formulaic TV comedies or crime dramas after work, just to kill time?

Well, time is the only thing we really own that is our own precious commodity, and we are all – so long as we are alive -- given the same 24 hours per day, regardless of our social status, income, health, intelligence or emotional IQ. 

What constitutes time well spent? What constitutes meaningful activity?

Well, our adult sons and daughters with developmental disabilities or mental health diagnoses struggle even more to fill their lives with meaningful activities. Whatever they are capable of, so many of them need active support from another human being to be able to do work, and when that support is not available, they have few choices left – namely watching a movie, listening to music, playing on the iPad, all entertainment-style options.Well, not really true. But the above options are easy. Just hand junior an iPad and you may just have purchased peace for the rest of the day. 

My son likes to color, do math problems, play board games, help in the kitchen, fold laundry, and many other things, but when I am home and I am busy working, if he can resort to a movie on the iPad, that would almost always be his top choice.

I have experienced the situation I mentioned above where I sit and read a book, and suddenly a pair of eyes are staring at me, just staring and staring while I try to read. They will keep staring, either till I chase them away, or till I drop my book and engage with the person. (It feels much like eating at the dining-room table while your hungry dog sits at attention with his most intelligent look, staring right at your mouth, following with his eyes every chewing motion your jaw undertakes until you throw him a bite. In short, it is annoying and unnerving and it is hard to continue what you are doing with such vigilant eyes on you.)  -- And while I sympathize with my son waiting and waiting for me to do something to entertain him (much like 5 year olds would), I also feel a need to carve out a minimum of minutes per day where I can recharge and relax on my own without being ‘on’ all day --- first at work, and second at home taking care of my disabled son.

So, when you picture parents or caretakers of persons with disabilities, picture persons who are almost always ‘on’, either at work or at home, being ‘with’ their persons with disabilities, engaging with them, instructing them, or keeping them safe. “Meaningful activity”  is, in my view, whatever keeps Ben engaged, happy, and for some amounts of time, also intellectually and emotionally and physically stimulated. That involves physical exercise, fun and games with family members and friends (bowling, board games, conversation), it involves self care and home maker skills – personal hygiene, taking care of possessions, learning to be safe in public, learning to get along with others, as well as cooking, doing dishes, doing laundry, cleaning one’s room, cleaning the bathroom, etc. It also involves some job training for skills and also academic pieces, as in continuing education. Job training and part time jobs with support will be available to Ben if I can figure out the transportation piece of getting him from day care to some part time job on a regular basis while keeping a full time job myself. The academic piece is not available after public school ends, so that one I will have to bring to Ben myself by what I choose to do with him at home, and that will involve continuing the 3 Rs.

What is meaningful activity for Ben at Church? Well, the service ‘feeds’ him. He likes to sing and pray, and we go to a liturgical church, and the routine suits him very well, since he knows what comes next and enjoys the routine. Outside the service, in Sunday School, there is no meaningful activity for him unless I or generous friends who care about Ben try to design it. He does not fit with the kids, he does not fit with the adults for the free time of fellowship. He does not fit in Sunday School anywhere, and it is times like that, (along with ‘dead time’ at home when I need to get stuff done that he cannot participate in) that caused me to reflect and think about writing this blog.

So often our adult children with special needs are warehoused (are kept warm, fed, and safe). Often they are simply there. Yes, they are ‘included’ in the sense that they are allowed in the room, but there is nothing for them to do other than to sit there and stare at those who are actually doing something. Sadly, at least in the case of my 19 year old son Ben, he struggles to think up his own things to do. He is not, generally speaking, a self starter any more than most five year olds are. Think of him as your typical five year old who reports to you that he is bored, and then he stands there and stares at you until you find something for him to do. He is not lazy, but he has learned, over the years that the things he can do, he cannot do as well as most people can, and therefore he is happy to stand back, passively, and let others do.When he does attempt something, he often fails as he tries to recall in his mind how he saw someone else do a certain task. That repeated failure is unpleasant, and therefore he avoids those things which he struggles with (just like we all tend to avoid things that bring repeated failure).

Meaningful activities – For special needs it costs a lot of money and a lot of time, in attendant care, in modifications of equipment, jobs, and entertainment, to generate it at a level that the developmentally disabled can participate with.  It is crucial that our developmentally disabled do have meaningful activities. Everyone wants to be useful, and the developmentally disabled no less than any of the rest of us.