It's been quite a while since my last post. This is mostly due to the fact that most days are simply a repeat of all the days that have gone before, and I don't have anything new to report. But there have been some new developments lately.


The BIG news is that Ian is now completely "potty trained." That phrase seems a little odd to use with a 19-year old young man, but since he is really a three-year old in a man's body, it's appropriate. No more diapers! No more smearing! Woot! However, with this milestone comes some adjustments. We have changed our routine at night. No more food or drink after 8 p.m., and we must be vigilant to make sure he goes to the bathroom before he falls asleep (I have to wash his bedding most mornings even with this precaution), and we also need to stay up until he falls asleep. He usually is still quite chipper long after I am ready to crash and burn. After all, he's a healthy young man with lots of energy, while I'm a middle-aged woman who longs for her jammies and sleeeeeeeeeeeeep! So this is what we do: we put a baby gate at the top of the stairs so that Ian is contained upstairs, lock all the doors except his and ours, and let him ramble around while we read, watch T.V., or stare vacantly into the distance wishing Ian were tired. Ian loves this arrangement, and bounces around with great joy---sometimes he climbs into bed and watches T.V. with us for a bit, and we are always hopeful this means he is getting tired and ready for bed. Most of the time it's just a breather before he gets up again and starts his bouncing routine. Eventually he does get sleepy, and he either falls asleep in our bed and we move him to his own, or he wanders into his room and falls asleep. The average time he falls asleep is around 11-ish, but there have been nights it is closer to midnight.  Here is the kicker: at about 9 or so we give him a cocktail of sleep meds that would make you and me fall over like a ton of bricks and sleep for days. It barely affects Ian. The cocktail includes Lunesta, Unisom, Xanax, and some natural sleep aids. We call him the Rasputin of sleep meds. Remember the story of how difficult it was to kill Rasputin? It's just as difficult to get Ian to sleep!

As always, Ian is my touchstone for how I'm progressing on the spiritual path. Just when I think I'm getting pretty holy (lol!), Ian pushes one of my buttons and I'm river dancing with frustration and irritation. My big lesson with Ian is PATIENCE. I've changed how I pray about circumstances with Ian. I used to ask Jesus to change Ian's behaviors, and now I pray that MY heart will change so I can accept Ian just the way he is with serenity and peace. Isn't that the way it usually works on the spiritual path? WE need to change---not others.

"God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

Life is the School, Love is the lesson

I have several hippie-ish bumper stickers on my car, and the subject line of this blog is one of them. I love it. It resonates with me completely-- it's what I want my life to be about.

I used to worry that I wasn't ambitious enough--that I didn't have any lofty goals in life. I have never wanted to be successful in the worldly sense, in fact, I never even thought about it. I don't advocate that approach entirely. I probably should have thought more carefully about my education and career plans, but I didn't. I  sort of floated through life with the vague sense that all would be well. I was not without anxiety and neuroses, but these did not concern how I would take care of myself---I just knew that I would be taken care of.

I don't worry about my lack of ambition anymore. I see that my real goal-- in fact-- my only goal-- to be God's love in the world--is ambitious enough. And Oh Lordy! Do I get plenty of practice!? Yes indeed. There is great truth in the old adage "be careful what you wish for."

I know many people will disagree with this, but I feel that Ian was given to us for a reason. He is my son by design, and we were meant to be together. If one believes in reincarnation, perhaps we are furthering our spiritual development by continuing to work on whatever "stuff" we had in a past life together---it's an interesting idea, isn't it? At any rate, here we are together in this life, and I believe there is a definite purpose involved. I'm not sure what the lesson is for Ian, but for me it is love, love, LOVE. Learning to love without limits, loving when I'm tired, cranky, sad, at the end of my rope, when I feel that there is nothing left to love with---I must still go on loving. And how do I go on loving? Only with God. On my own strength and will, I would be dust by now, but God is there, doing the loving when I can't. Does that make sense? God loves through me---which is really, really cool. If I can learn to get out of the way, more of God's love can pour through me. I need to be the hollow reed. But becoming the hollow reed sometimes really sucks. It's hard. I want what I want when I want it. So there. But as Ram Dass would say "It's all grist for the mill", and even my bad attitude teaches me how far I have to go spiritually. It's all good. I need to be as loving and patient with myself as I know God is with me.

And God has given me the best companions ever for this journey starting with my beloved husband, and branching out to my family and friends. Thank you. I am grateful.

This one is for you Shannon. Thanks for caring.

Lather, Rinse, Repeat

That phrase, commonly found on the back of shampoo bottles, pretty much sums up our lives with Ian. I'm not sure how much new information I can convey on this blog---each day flows into the next with only minor variations on a common theme: How do we make it through another day with the fewest meltdowns, the happiest possible Ian, and the least stressed out parents. Some days are more gracefully lived than others. Some days I want to shout "I've had it! That's it! Someone else take up the mantle of parent-of-severely-autistic-child from now on!" I'm not particularly proud of these moments, but I acknowledge that I am human and not near being the saint I wish I were--so I have these moments. But as a very dear friend pointed out once to me---I consistently "show up." I'm here. I love him. Even when he is pulling my hair. Even when he screams so loud my ears ring. Even when he lies thrashing in our bed distressed beyond imagining by something we can't even guess at. Even when we have to wrap him up in a blanket and sit on him to try to chase away these anonymous fears. Yes, even when he poops and smears it all over his room. I love him.

So---another day passes with "the bug", and the grace of God whose love "passeth all understanding" keeps me going.  And the love of friends and family, and by the extreme good fortune of having the help of a wonderful caregiver and her family (thank you, thank you, Kandace!) Here's hoping the state continues to acknowledge our need for help. It really does take a village to raise Ian.

It's been 14, almost 15 years since diagnosis. God give us the strength to keep "showing up."

The picture above was taken several years ago---here are a few more for your perusal:

Another picture from several years ago--he is with his sister and Dad lurks in the background.

When he had hair!

When he was going through a particularly bad phase of pinching himself and pulling out his hair. Now he always has a Marine haircut to prevent the pulling. The pinching has actually been better lately---thank goodness!

Iced in

It's been an intriguing couple of days here. Due to incredibly inclement weather (tons of freezing rain), most of the city has been closed down. My day care center even closed down, and that's a first in the nearly 4 1/2 years I've been working there. I'm looking out my window at the ice-covered trees sparkling like diamonds in the frosty air. It is quite beautiful, although quite treacherous if you are driving. Most people aren't driving---many businesses and schools are closed. I haven't emerged from the house in two days--and spent all of yesterday in my jammies. We still have our power, plenty of food, and most amazingly---no Ian.

He has spent the last two nights at his caregiver's house as we deemed it too risky to drive and fetch him. So we have been experiencing an uncanny quiet here at the McGrew house. Really, it's very weird. Usually when we are sans Ian, we are on vacation--it is very rare that we have days in a row here at home without him. I can't get over the quiet (did I mention that it was uncanny?) I keep thinking "so this is how it would be if Ian were normal." I know that isn't the most productive thought in the world, and I try to squelch it. The danger is, I could really get used to this! But I can't allow myself to get used to this, because Ian will be back in a few hours and all the chaos and noise will come back too. I do find that I miss my little bug, and I will be glad to see him, but oh! The peace! The serenity! The lack of having to lock all the doors and cabinets and refrigerator! Most importantly, SLEEPING THROUGH THE NIGHT! That is the most lovely thing of all---to know that there is no need to get up frequently to check on Ian, to change his poopy diaper, to clean up any smearing, etc., etc. Really, it is bliss.

But how interesting the human heart---I miss my little man (well, not so little on the outside, but forever little on the inside), and look forward to giving him a big hug when he returns. Then it's back to the pterodactyl noises, the hyperactivity, the mess, the vigilance. But also there will be love. Lots and lots of love.

In the meantime, you can bet your life I'm soaking in the peace. And I'm STILL in my jammies. I just may make it to the shower---who knows? ;-)

Grist for the mill

I did a great deal of thinking yesterday (I know, very dangerous)--mostly about things spiritual. When I strip away all that is nonessential in my life, I see that my goal is really very simple, yet also very profound: I want to become a channel of God's love in the world. I know that sounds crazy-ish (yes, that is now a new word), but it really is my goal. How far have I come in attaining this goal? Not very far. At all. The rubber hits the road in this regard with how you behave to the people who are closest to you---in my case, my husband. I can be just as sweet as pie with my co-workers and the children I take care of, and can start feeling very holy indeed, and then I come home and snap at my husband over something minor. Well, actually, usually something to do with Ian.

Ian needs to be checked at frequent intervals throughout the evening. We usually take turns doing this--but often I feel grumpy and put-upon and I sigh heavily when it is my turn. I want John to know what an imposition it is for me to get up from the comfy couch where I was reading (probably something of a spiritual nature--how ironic!) to go see what Ian is doing. It doesn't matter that John got up fifty times earlier--somehow I still feel miffed that I have to do it at all. Also, in dark moments (such as when Ian has just had a meltdown and pulled my hair, or smeared poop all over his room) I feel that somehow life has been incredibly unfair by giving me such an intensely difficult life. Like my life is more difficult than most people's. Ha! When I am wrapped in my cocoon of self-pity, I forget that  everyone has struggles and pain--it just may be of a different flavor than mine. But all is not lost! Hence the title of this post! All this is grist for the mill.

Here is the wikipedia definition for this phrase: The proverb "all is grist for the mill" means "everything can be made useful, or be a source of profit." There are some minor variations, such as "all's grist that comes to his mill", meaning that the person in question can make something positive out of anything that comes along.

If my goal is truly to become a channel of God's love (and I believe it is possible--God being God and all, he can use even a dented, tarnished instrument to play beautiful music), then everything that comes into my life is an opportunity to create a more open, more beautiful, more humble, more loving channel. Instead of fighting against the "slings and arrows", I invite them in with love and gratitude because they help create a space for transformation. Instead of being bitter and closed down, I am joyful and open. All this sounds very nice indeed, but sometimes it is just no fun at all. It means I must set aside my "agenda" and allow God's agenda to reign. I believe his agenda is always about creating more and more love in the world---so my desire to sit on the couch and read goes way down on the list of priorities.

All this being said, I acknowledge that there is a place and time for self-nurture. If one is depleted, one cannot be a very useful channel. That is why it is so important for John and I to get away together, and for each of us to do those things which give us joy personally (like reading on the couch), but not at the expense of the larger purpose--to be God's love in the world. Forget the world---let me be that love in my own home! And then I can tackle the world.

John and I have always said that Ian is our greatest teacher. He is our grist. He shows us the limits of our current reservoirs of patience, humor and love, and points the way to greater and greater oceans of these same attributes.

So, I have a long way to go, but I am not despondent or despairing. I believe that God can use even me, as I open myself more and more to the transforming power of his love.

Meanwhile---move over and make room on that comfy couch!

 

Tired

6:00 a.m. Poop. Smearing. Grim looks exchanged. Scrubbing. Laundry. Sigh. Repeat....

We need to come up with a new plan to keep this from happening over and over. Unfortunately, we have run out of ideas. If anyone has any foolproof ideas for keeping poop in a diaper and not on walls, windows and floors---chime in please.

Tired. Really tired.

Another post about...

Did I actually have the nerve to say that we have been experiencing a time of peace here Ian-wise? Did I really put that thought out into the cosmos? Well, the last laugh is on me.

Last night Ian exploded to life at 3:00 a.m. and was in a major party mood--woo-hooooo! We heard him bouncing around his room screeching and laughing and basically making as much noise as humanly possible. John checked on him once, and I checked on him once. I knew I should continue to check on him from time to time but... I. Was. Too. Tired. More's the pity.

At 6:00 a.m., John went to get him up for school, and we were greeted with----POOP! Everywhere. On the windows. On the floor. On his blankets. On him. He was grinning ear to ear and just as happy as could be. John and I exchanged the usual grim let's-get-to-work looks and set about scrubbing everything in sight and then scrubbing Ian. There is a horrible temptation when one is tired and irritated to take all that frustration out on one's spouse.  Well, at least I have that temptation--John seems to maintain his calm and patience at all times. Not me. So I was a little short with him and not as gracious and patient as I could have been. Sigh. But John is very forgiving---darn it! He's nearly perfect! Luckily, he loves and accepts me in all my imperfection, and he knows how much I love him, and how grateful I am to share this adventure in raising Ian with someone like him.

I just realized this is ANOTHER post about poop! How's that for a recurring theme in one's life. POOP! Well, poop happens.