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.

peace

Things have been pretty calm here at the ol' McGrew household. Of course, "calm" is very relative. We still have a pterodactyl-imitating, party-in-the-middle-of-the-night whirling dervish living with us---but essentially all has been well. The only update is that Ian started wetting his pants at school. He does this periodically---he really doesn't understand what all the hullabaloo is about putting one's waste in the toilet, and occasionally he goes on strike and just pees as the spirit moves him. In these instances we have to beef up the reward system (I'll give you jelly beans if you go pee-pee in the potty!), and we also have to make liberal use of time-out. For Ian, time-out consists of sitting at the kitchen table with his head down. This always makes me feel guilty. I know he has to suffer consequences for unacceptable actions, but watching him sit there with his head on the table patiently waiting for his sentence to end tugs at my heartstrings. He may have a young man's body, but he is still such a little boy inside. Luckily, this episode of wetting his pants was a one-day affair, and he's back to toileting as usual. I can just hear the conversation he is having in his head "What is the big deal about peeing in the potty--it is sooooo much more convenient to just let her rip right when I need to! The big people seem to really have an uptight attitude about wet pants and underwear. What's up with that? Oh, well."  Another monologue he could be having is "What's with the clothes thing---I want to be freeeeeeee!" Ian loves being naked. Given half the chance, he sheds his clothes and gallops around the house with ferocious joy and abandon. A not uncommon phrase in our house is "Put your pants on Ian!" We are very vigilant when there are guests--no telling who would have a heart attack if Ian came bounding down the stairs in his altogether laughing maniacally.

Such is life---did I say things have been calm?

Ping-pong balls

Yesterday's incident reminded me that on this journey of raising an autistic child, there is no time to rest on one's laurels. Although Ian has been in a relatively peaceful place for a bit now, there isn't a point when you can say "Ah, now we're set and everything will be fine." It's more like that old adage that life is like being in a bathtub full of ping-pong balls. You think that you finally have all the ping-pong balls nicely settled, and then you move your pinky and *boink*, up pops a ping-pong ball.

John and I live in a bathtub full of ping-pong balls. Here is what happened.

Ian attends a Christian fellowship group for disabled adults every Tuesday evening. This gives John and me extra time in the evening to collect our wits and relax. We did that last night, but right before Ian came home, his caregiver called with the news that Ian had attacked her. He suddenly just lost it, lunged for her and grabbed handfuls of her hair with both hands. She was able to disentangle herself, and he seemed to be fine after that.  He went to the fellowship group with no further incidents. John and I were wary when he returned home, but he seemed happy if extremely hyper. I mean this kid was bouncing off the walls! He is usually very active, but last night he was manically screeching, running, laughing, and slamming doors and cabinets. We gave him his nighttime meds, hoping that would calm him down, but no go. He was still a pterodactyl-imitating tornado. Finally, we went upstairs to "go under" hoping that would calm him. It seemed to be working until I took a toy he was holding from his hand, and then he lost it. He started kicking and yelling, and I had to beat a hasty retreat to the spare room to avoid getting hurt. I came back after a few minutes to help John cover him with a blanket and calm him. This requires lots of eye contact, body pressure ("squishing") and soothing words of comfort. He did finally calm down, but it was about midnight before he was quiet.

Those ping-pong balls were just a-flyin' everywhere last night. I think I found one under the couch this morning.

Ian movin' and groovin'

O.K. It took me a million years to finally learn how to download a video on youtube, and my computer was not cooperating, and I was vexed and miffed, and my husband had to rescue me, and I wasn't as gracious as I should have been, and my head hurts, but here is the URL to the youtube video of Ian dancing his manic little dance to his favorite music: http://www.youtube.com/watch?v=j3B3gdlQtik

I had to take a long, hot bath after I finally figured it all out (well, after John figured it all out and I sat next to him huffing and puffing.) Being a Luddite is not conducive to success in the techno-world. Oy!

The good news is that this was Ian's weekend to spend a night at his caregiver's home. So John and I went out and had dinner with my best friend and her new husband, and then came home to watch a video, stay up scandalously late, and sleep in this morning. Woot! :-)

An I Love Lucy episode

My husband said something funny yesterday. He does this occasionally *grin*, and what he said was a very accurate description of what it's like to take care of Ian. He said "It's like that chocolate assembly line episode on I Love Lucy." Yes indeed.

Here is a typical example: Ian wants breakfast. First, you have to race down the stairs ahead of him because he is apt to open the pantry (if it's unlocked), grab a bag of M & Ms and start stuffing handfuls in his mouth as you chase him around the kitchen. Once you wrestle the bag out of his hands, you go back to the pantry to get the much-more-appropriate-breakfast-item oatmeal. While you are doing this, Ian opens the refrigerator to get juice. You quickly put the oatmeal down to pour him a glass of juice--if you are not quick to do this, there is the very real possibility that he will dump the entire bottle of juice down the drain. This is a favorite activity. We cannot leave any containers of liquid out on the counter as the contents therein are destined to go down the drain in a split second if Ian has anything to say about it. Meanwhile, while you are pouring the juice, you keep a sharp eye on Ian as he bounces toward the oatmeal. Nothing would make him happier than to start strewing oatmeal around like confetti. We try to avoid that. Clean-up's a bitch. Sorry about the language. If I have managed to forestall an oatmeal party, I get out the milk (still keeping an eye on Ian and the oatmeal), and start assembling the oatmeal, milk and brown sugar concoction. Oh, digging great handfuls of brown sugar is also a favorite pastime, so I usually try to hold the sugar while pouring the milk into the bowl of oatmeal. Then I juggle all of this over to the microwave to nuke it. If I am smart, I try to keep Ian busy by getting his place mat and spoon. I am usually not smart at 6:00 in the morning. By this time he has probably noticed I failed to lock the pantry and is trying to sneak more M & Ms while I'm balancing a bowl of hot oatmeal, a gallon of milk and the container of brown sugar. He is usually successful and grins a multi-colored grin while dancing around the kitchen on a sugar high. Eventually I plonk the bowl down on the table and convince Ian that eating a wholesome bowl of oatmeal (albeit, highly sweetened with brown sugar) is a much better alternative to eating a whole bag of M & Ms. Hey, those M & Ms are MY drug of choice! I need those suckers!

So, imagine Lucy with her mouth stuffed with chocolate candies. Recall the expression on her face. That's John and me. Or perhaps you can envision Ian with his grinning mouth stuffed with M & Ms. That is probably a better image---then you can see me running around the kitchen trying to pry the bag out of his hands---funny stuff. Ha.

Speech

Go see The King's Speech. Colin Firth and Geoffrey Rush are absolutely brilliant in their roles. You will laugh. You will cry. You will want to see it again.

It also made me think about how vital verbal communication is to us as a species. Of course there are lots of non-verbal cues when we speak, but the actual words and the ease with which these words are spoken are so important to getting our meaning across to our fellow humans. It is something that most of us take for granted.

My son has no words.

He started speaking at the usual age, although there were probably signs of emerging autism even then, but when he was four years old he lost all of his speech. Suddenly. It was almost like he was talking one day, and then not talking at all the next. Boom. John, Kirsten (my daughter) and I still remember some of his sentences. Once when I had both my children with me at the drug store I looked at them and said "Now remember, no touching!" After a few moments I heard Ian's little voice pipe up "No-no, Disten (his word for Kirsten), don't touch!" and I turned around and saw my daughter quickly put her hand back to her side. Yes, Ian was a narc at a young age! He was probably about 2-years old then.

It's hard to believe now that he actually spoke. That he said mommy and daddy and many other words. The only phrase he has left is "buh-buh" which is his way of saying "bye-bye." It's been 14 years since we heard our son speak any meaningful phrases. He is certainly VERY vocal--think of the sound Godzilla makes in those old Japanese movies and you get an idea of how he sounds most of the time--but there are no more words.

John and I, and his caregivers, have become very adept at deciphering what Ian wants through his gestures and vocalizations, and by the way he takes our arms and leads us to what he wants. He also points to picture symbols to show us what he wants to eat (mostly chocolate!) We have learned to read his squeaks and growls, his hoots and groans, and all his various postures, but oh! It would be soooooo much easier to hear him talk. We often wonder what exactly he is thinking, whether he is in pain when he gets teary and angry, and it is very frustrating not to be able to simply ask him what is wrong.

I had a dream several years ago. In this dream I was in heaven. I was on a beach, and the sand was a brilliant, blinding white and the ocean a deep, jewel-like blue.  In the distance I saw my son running toward me. He looked as he did when he was about three, with his flaxen hair and blue, blue eyes. He was smiling and laughing as he ran into my arms. As I embraced him he leaned back, looked me in the eye and announced proudly "Look Mommy---I can talk!" I woke up with tears on my face.

I really don't know what the next life will be like, but I dearly hope and pray that I can hear my son speak as I hold him in my arms, and that we can run laughing down that beautiful beach basking in the love of God.

A bit of an addition to my New Years post

O.K., so my husband reads my latest post and tells me that I have missed some details. Apparently, hibernating in the closet last night was a good move on my part, because I missed "the rest of the story." John spent about a half hour in our bed with Ian and then told him that he would lie down with him in his room. Off they went to Ian's room, where John stayed another 15 minutes and then left. A non-sleepy Ian started bouncing around his room, so John went in to lay down with him again for another 15 minutes and--Praise the Lord--Ian finally fell asleep around 1:30 a.m. John went to bed, but woke up at 4 a.m. with the feeling that he should check on Ian. He did so and discovered that he was completely naked (but at least he was still asleep!) So he dressed him and went back to bed. Ian came into our room at 8 a.m to snuggle under the covers.

All this time yours truly was blissfully snoozing in the safe haven of our wee little closet, blissfully unaware of all the activity going on. Hmmm....perhaps I should make this a regular thing! No, I think John would eventually catch on and pry me out of my cocoon. Drat!

Uh...Happy New Year?

There is an entity that takes over my son from time to time. He can be happy and giggling one moment and in a flash, this entity appears and---hoo boy---things...uh...change.

Yesterday at about 11:00 (I know, way before midnight...I couldn't last), Ian and I went upstairs to hang out. We sat in my bed while I read, and he giggled. All was well. Then I became very sleepy and decided Ian's continued party-attitude did not mesh with my need to sleep, so I put him in his room. About an hour later (yes! midnight!) John came in after checking on him to tell me that he had peed copiously on the floor. Sigh. So, I get up, change Ian and stick him in bed with me while John did the honors with Ian's floor. Ian was giggling and bouncing on the bed, and I must have voiced some slight annoyance, because all of the sudden, he was invaded by the entity (cue the creepy music.) Ian tried to pull my hair and pinch me, so I got out of bed and called to John who rushed upstairs to help me. I went into the closet to try to sleep when all of the sudden I heard John exclaim sharply and then heard a sound from Ian which can only be described as an ululation. If you have ever seen those horror movies where someone becomes possessed, you have an idea of the quality of the sound that came out of Ian's mouth. John had exclaimed because in his anxious, angry frenzy, Ian had broken off the middle finial on the headboard of our bed. Yep, yanked it right off! Crack! When Ian realized that John was angry, he just lost it. I emerged from the closet in time to help wrap Ian in a blanket and sit on him while John held his arms. Ian thrashed and screamed for just a bit, and then quickly quieted down. We stayed in this position for about 10 minutes until we were fairly sure Ian had calmed down. Then as suddenly as the entity appeared, it disappeared, and the giggling, happy Ian re-entered. Shew! No exorcism was required. This time.

Well, Happy New Year everyone! What a way to start the year! Oy Vey!