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holding handsWatch them, and you’ll see it for yourself: a child or adult, with autism or another disability, holding hands with a parent or other caretaker as they walk together. Sometimes there is a version of this, where the disabled person holds the other’s purse, or elbow — but somewhere, somehow, there is a holding.

I really dislike it when Joseph holds my hand. It was cute when he was small and all the other kids did it, but now it sticks out like a sore thumb. This small gesture may as well be huge words painted up in the sky: DISABLED. This person cannot make it alone, handholding says. S/he needs someone more intelligent, more together, more able, to maneuver them through life. 

So I’ve been encouraging Joseph to let go. He dances on the boundary of independent versus dependent, and I would have him walk beside me, our four hands swinging, happy, confident and alone.

It only works sometimes. Joseph, of course, doesn’t put all that meaning into it. He likes me, likes my support, likes the comfort of holding my hand. It’s as simple as that – to him.

Independence is an issue that seems to have risen up by itself lately — independently, if you will. A few posts ago, I discussed the public bathroom dilemma. That’s been slowly shifting to the point where, some of the time, Joseph will stand outside the bathroom door while I use it, and I will stand outside the bathroom door when he uses it. Yesterday that happened twice with great success! I felt really encouraged.

Until we went to the hair salon where, for some mysterious reason, Joseph got hit with an anxiety storm. When I tried to pee on my own he started screaming – loudly! Imagine it: smallish, cute hair salon in a little house, everyone able to hear the panic-stricken screams. When I, pants down to my ankles, pulled him into the bathroom with me, he hit the mirror, hard, with his fists. Luckily, it didn’t break. He stood there and screamed, over and over again, until I gave up on the idea of calming him down for a haircut and, pulling him through the room and stammering apologies, got him out the door and into the car.

When we got home, I cried. Lots.

IMG_0380Then I texted my girlfriend three little words: “I hate autism.”

There are lots of good things happening, too. An Indian family is renting our guest cottage for a few weeks, and the 10 yo boy and Joseph are becoming friends. They are both musical and they both like to build, so it’s nice to see them hang out. We haven’t seen that a lot and it is a thrill to see it now.

Joseph is the only fourth grader who insists that his mom or dad walk him to his classroom in the mornings. When I walk him, he also usually insists that we — shudder — hold hands. A while ago, I promised him that, if he would walk by himself for a week, he could take his pick of fancy restaurants and we’d take him out to celebrate. He’s obviously been mulling this over, because he announced that he is going to do it, starting this Monday. I wonder if, when push comes to shove, he actually will. Oh, please please please God make it so. Help this soul to step up to the next level, one where he can stand strong within himself.

Attachment is that thing that wakes us up in the night, makes us slaves to our lifestyles, makes us miserable with life as it is. So, even as I long for Joseph to grow more fully into his potential, I caution myself to be detached to the outcome. That part, after all, isn’t under my control. As the Bhagavad Gita says,

Disinterested, pure, skilled, indifferent, untroubled, relinquishing all involvements, devoted to me, he is dear to me. He does not rejoice or hate, grieve or feel desire; relinquishing fortune and misfortune, the man of devotion is dear to me. Impartial to foe and friend, honor and contempt, cold and heat, joy and suffering, he is free from attachment. Neutral to blame and praise, silent, content with his fate, unsheltered, firm in thought, the man of devotion is dear to me. Even more dear to me are devotees who cherish this elixir of sacred duty as I have taught it, intent on me in their faith. 12: 16-20

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I teach yoga for the staff at Joseph’s school, and one of the regulars is his special ed teacher, Dana. Usually we focus on yoga but, every now and then, she’ll share with me a tidbit about Joseph when class is over. Last week, for instance, she wanted to tell me about the “miracle” that happened.

For months Dana has tried to get Joseph to leave his session with her and walk into the cafeteria (for lunch) by himself. Now, the cafeteria is a challenge unto itself, being noisy, crowded and somewhat unstructured, but the big deal was that he’s always refused to go in without his aide. On the day of the miracle, Joseph walked over, found a friend, and went into the cafeteria with him. And he’s been doing it ever since.

Wonder of wonders, miracle of miracles!

Another one: This morning I walked Joseph to his classroom. Never, ever in the past has he allowed me to leave before his aide shows up, but today he let me kiss him and go. Wow! On my way back to the car I saw his aide coming up, and I excitedly told her what happened. “Yup,” she replied. “Takes about 100 repetitions and then he can do something.”

I laughed. “Blue Eyes and I say it takes 500!”

Repetitions. What a great way to learn patience. What a marvelous way for my character to be formed. What great sandpaper for my rough spots.

Will it ever end????

Sigh…probably not. And it gets more complicated. Now we are endeavoring to teach him to speak to us with respect, to clean up after himself without being reminded…that sort of thing. It feels endless. Maybe it is. Maybe every parent feels this way. Maybe I’m going to set myself on fire.

sugarEaster was full of sugar, and right afterward we took a week’s vacation. Think ice creams and other sweet things — the kind of thing you do when you’re on vacation.

Trouble is, by the time we got home, we saw that candida had taken over Joseph. He was spacey, stimmy, tantrummy, and an overall pain in the butt. We put him on a sugar-free cleanse, which has been devastating for him. Almost every morning he wakes up and starts an argument with me. When can I have sugar? Can I have it if we go to the lake in the summer time? Can I have it on June 6th, the last day of school? Can I have a soda the next time I go to a restaurant?

It’s relentless. I am trying to do my Love and Logic — I love you too much to argue — and leaving the room, but this kid will not let it go. It’s a major struggle.

Our Love and Logic Instructor once wrote on the whiteboard four big letters:

C
T
F
D

 

Calm The F*** Down.

i pray for long-term perspective. For more patience during these phases that require so much repetition. I pray to remember that things take longer with Joseph, and that I need to take care of myself in order to deal with his special needs. Last, but definitely not least, I pray  to CTFD in those trying times.