Time Off

John and I just got back from Kentucky after spending two lovely days with my best friend for her wedding. That is a poignant, sweet, wonderful story in itself (and very heart warming), but not what this post is about. This post is about time off.

Anyone who lives with and/or is raising a person with a severe disability knows the rarity and the value of time away. We are extremely blessed to have a caregiver for Ian who is quite comfortable taking care of him for periods of time in  her own home so that John and I can have a break. It has been a godsend in every sense of that word. When my friend told me she was getting married in a month and wanted me to be the matron of honor, it was not just a simple task of asking for time off of work. It also involved making sure Ian's caregiver was free those days, making the arrangements for his stay with her, and checking the budget to make sure we had the money needed to pay for Ian's care. Medicaid pays for some, but not all of the hours needed.  The payoff is magnificent once we have everything arranged. We are extremely blessed to have a caregiver in whom we have complete faith--so there are no worries at all about the quality of care he will receive while we are gone. The longest we have ever been away from Ian at one time in his 18 years is 6 nights--we went to the Smokey Mountains last October--and I cannot even begin to tell you how rejuvenating this time was for us. Basically, all John and I did was sit, eat, take short walks to look at the beautiful scenery (because we felt guilty sitting so much), sit some more, eat some more, sleep and...eat. Oh, and we turned into prunes lounging for long periods in the hot tub. That's all we really want to do when we get a chance to get away. That, and get to know each other again as the very good friends we are. We talk and talk and talk. I forgot to add we read and read and read also. Throw in a few DVDs and you have our very exciting vacation. But we don't want excitement--we have plenty of that at home. Our stated goal is to do NOTHING.

Anyway--my friend in Kentucky knows all about our trials and tribulations, and after the rehersal we all caravaned to a lovely home on a lake to spend the night (there were about 10 of us from out of town.) After we all trouped in exclaiming at the beauty of the home, she pointed to the enormous master suite saying "John and Katie never get any time alone, and I want them to have THIS room!" It was huge. Everyone else had to make do with small (but very nice) bedrooms while John and I luxuriated in this palatial room complete with a four-poster king-sized bed that was so tall I nearly had to pole vault to get into it. Attached was an equally palatial bathroom with gold accented faucets and a dual head shower. Wow! There are no words to describe the feeling of laying your head on your pillow at night knowing you will probably sleep through the whole night, and most definitely will not have a pterodactyl-imitating, hyperactive night owl leaping into your bed in the middle of the night. Bliss. When I did wake up occasionally, I noticed I had a moment of hyper-awareness before thinking "Oh yeah---no Ian--zzzzzz...."

The next day I could give my full attention to the bride and enjoy every moment of the festivities knowing that we would have yet another full night of uninterrupted sleep after traveling home, and time alone together the following day. I had the time of my life---not only was I thrilled for my friend, I was able to focus on the moment and all the people present without worrying about what Ian was possibly getting into. I was also blessed by having NO headaches or pain! Woot! I was very very thankful indeed.

When Ian did come home today, it was great to see him. He started right in with his yodelling and pterodactyl imitations, bouncing all over the house, but with two days of respite behind us, I just grinned and gave him a big hug. He is always touchingly happy to see us. Sometimes he even gets weepy. You see,we are not really sure if Ian comprehends that we will return when we leave-- although we do try and explain this concept to him in various ways--and this breaks our hearts. But we still need, and I mean NEED the time away, and we are so grateful to have a wonderful caregiver who loves Ian like her own child (many, many, many thanks Kandace!)

Maybe one of these days I'll tell you the story behind my friend's wedding. It really is incredibly cool. Suffice it to say, she deserves all the happiness that has come her way, and I wish her a very blessed, loving and long union with her new husband. Mozeltov!

Merry Christmas

The Merriest of Christmases my dear friends. I am so very blessed. Just this morning, Ian opened one of his presents. He still has (and probably always will have) a childlike joy in new things---he doesn't "grok" the whole Christmas scene--but he does know how to unwrap presents, and understands that there is probably something wonderful inside the mysterious packages under the tree. He loves toys that play music, and this morning he unwrapped a particularly cool one that plays all sorts of tunes, has a keyboard, allows you to select style (jazz, hip-hop, reggae, etc.) along with several other groovy features. He LOVED it. He carries it around like a boom box and puts it right next to his ear, all the while rocking back and forth with glee.

What can I say about all the gifts Ian has given me? Oh my goodness. Well, here's one.  He has given me the great gift of perspective. Most of the things that I used to think were so vital for my happiness and wholeness I see now were just illusions---shadows that had no substance. Living with a severely disabled person pares down one's expectations, desires, wants and needs to the bare bones. And I'm surprisingly happier for it. Most stuff is just that---stuff, and not really necessary at all. What IS necessary is love, and that's about it. I'm reading an exquisite book entitled Marriage and Other Acts of Charity by Kate Braestrup. The following paragraph from this book sums up quite nicely my thoughts on life and religion:

"God is love, John's Gospel tells us. That's a whole theology in three words. The practical application of that theology---God is love--- is nearly as simple. Be as loving as you can, as often as you can, for as many people as you can, for as long as you live. Why should you do this? Because."

While I have always believed that at an intellectual level, raising Ian has caused me to apply this in practical, everyday ways. He has been my guru, my spiritual director, on this wild and woolly journey called LIFE. Day to day life with Ian draws out undiscovered depths of unconditional love, patience, forbearance, humor, compassion, and all sorts of other good, lasting, solid stuff. What else matters? Do I need a big house, a fancy car, unwrinkled skin, a great wardrobe, etc. etc. (O.K. the unwrinkled skin would be nice...sigh....)---NO! I need my dear lovely son in all his quirkiness to remind me of what is truly important and lasting. I need to love the people around me as much as possible (because they won't always be there), and I need to keep Jesus firmly in my heart because I love him and he has been such a good friend and teacher to me. That's it. That's all. That's enough. So hugs all around. I am so thankful for my crazy family: my dear patient husband, my darling daughter and that wonderful, wacky son of mine.

Again I say Merry Christmas. And may we all experience the blessing of perspective. God bless you !

I told you so

You know it's a bad idea. Past experience has taught you that it's a very bad idea. And yet, when you hear Ian partying in his room at 3:00 am, and you have already checked on him once, the temptation to just lay your head  on your pillow and fall back asleep is irresistable...so you think positive thoughts and hope for the best. Zzzzzz...


Fast forward several hours-----


John comes back in the room after checking on Ian with one word: "Poop." This can only mean one thing; Ian has pooped at some point during his party session, taken off his diaper and has been happily creating poop art throughout his room. I get up without a word, and off we go. John and I have choreographed poop clean-up like a ballet: we pirouette through collecting poopy blankets and pillows, and leap gracefully around scrubbing walls and windows and, of course, Ian. There are very few words exchanged, except for the occasional "Yuck!" and "Ewww!" Our poor washing machine has done double, triple, even quadruple duty over the years cleaning poopified articles----I hope it holds out. It's over 20 years old, but I pray daily to the Great Washing Machine God that it continues to do its very good work for a few more years. It's making some odd noises; I choose to ignore them. Ignorance is bliss.


All this takes about 45 minutes. Standard procedure. No big deal. Just another poopy day. Sigh.


Hey, Merry Christmas Eve Day everyone!

Cherished moments

There are moments. Moments of gentle sweetness--almost achingly dear--on this journey with Ian. I treasure these moments and tuck them away in the deepest part of my heart to strengthen me during the harder times. They add to the fuel of love and help keep us sane and keep us strong. I had such a moment yesterday.

I was sitting on the couch reading and had one of Ian's movies playing as usual on the T.V. Ian was wandering about, practicing his pterodactyl noise and occasionally checking in on his movie from time to time. Eventually he gravitated toward where I was sitting and stood in front of me davening back and forth while looking me in the eyes. I smiled at him and said "Do you want to sit with me?" He bounced over on the couch next to me, still holding my gaze and smiling. It appeared as though he was trying to ask for something. John and I have become quite adept at interpreting his various movements, gestures, and vocalizations, and I could tell there was something else he wanted from me. I asked "Do you want to lay your head in my lap?" I put a pillow on my lap and he immediately plonked his head down giggling. He stretched out his 5'10" frame and settled himself comfortably on the couch with his head in my lap and his eyes on the T.V. I spent the next 15 minutes or so stroking his hair and face and rubbing his back. Ian had a grin on his face the whole time.

These moments do not last very long, and he was soon up and about and yodeling at the top of his lungs and trying to bite the legs off the sheep in my nativity scene, but those few moments of quiet communion on the couch held me all evening, and those behaviors of Ian's didn't seem so stressful.

Love really is amazing.

Poop redux

O.K., so last night I went to visit a friend whose daughter just had a baby. Oh the sweet freshness of a brand-new person! He was very cute, and I offered to watch him while my friend and his daughter went out for ice cream. He had that wise Einstein-ish look that newborns have, and I enjoyed cuddling him. After my friend returned, his daughter went out to pick up a friend, and he and I had a nice long talk. It was very peaceful in his house, with a fire going in the fireplace and plenty of cheer and goodwill.

Then I went home.

The first thing I noticed was how quiet it was. Too quiet. When I came in the kitchen, Ian was seated at the table, which is where he is when he is either eating or in time out. But, there was no food...not a good sign. I turned and looked at my husband on the couch in the family room. How can I describe him? Hmmmm.....he had the sort of burnt out, wild eyed look of someone who has either done hard drugs for way too long, or of a vet with severe PTSD. So I ask (with trepidation) "What happened?"

There was a lengthy silence while John rubbed his face wearily with his hand. I waited. Then he sighed and said "Ian went up to his room and removed his pants. I thought he was going to (insert euphemism for Ian's favorite "hobby"), but he just let loose with a copious stream of diarrhea (sorry folks, the truth ain't pretty!) right on the floor of his room." Apparently it went everywhere: on the floor, on the wrestling mats, between the folds of the wrestling mats, and on several blankets. It took my husband a half hour to clean up the mess.  He was shellshocked and uncharacteristically didn't want to talk about it.  However, I was able to gather the following information about the "operation:" supplies used--one half roll of paper towels, a bottle of environmentally friendly greenworks liquid cleaner and bags for the detritus.  With further prompting he was able to say that first he thought one Kroger plastic bag would be sufficient, when that wasn't enough he got a second one, but even that apparently was not enough and he eventually had to use a third large paper bag.   With clear disgust on his face he vaguely pointed in the direction of the washer and whispered, the blankets are in the washing machine.  How to say this delicately--the soiling was rather extensive and copious.  We had to wash things three times. He also dumped in the clothes he was wearing during the clean up operation. All during the half hour cleanup he had Ian sitting on the toilet so he would be contained until he could clean him up. After he changed Ian, he sat him at the table in time out, and went to recover his wits on the couch. Which is where I found him after my lovely peaceful evening with a darling newborn. If my husband were the drinking type, I'm sure he would have had a stiff drink in his hand. As it was, he turned on one of his favorite Christmas movies and zoned out.

I hate to admit it, but I'm not too upset I missed out on this particular event. But I am sorry my husband was traumatized. I am happy to report that he has recovered, and Ian's room has no lingering unfortunate odors. Thank God we tore out the carpet!!

Hair pulling

Last night John and I went to a Christmas "do" at one of his colleague's homes. As a side note that has nothing to do with Ian or autism, this is one of the coolest houses I've seen in a long time. The core of it was built in the '30s and then was added onto bit by bit to create this labyrinthine creation of surprising twists, turns and rooms. It is built on 4 acres in the middle of the city, but you feel quite secluded by the trees---there was a beautiful white mantle of snow over everything, and our shoes crunched very satisfactorily as we walked up to this magic house. Of course, the decor matched the whimsical nature of the home---it was all quite lovely.

Fast forward to coming home. Oy.


We were met at the door by our screaming, raging, nervous-wreck of a son. I can only guess that he wasn't expecting us to be so late (it was about 9:45 in the evening), and although his caregiver said he did fine while he was with his family, he promptly fell to pieces after he left. What usually helps in this situation is to get Ian on the couch, put a blanket over him, and "squish" him--meaning, I sit on the couch and lean on him. The squishing commenced, and we were watching a movie, when Ian's hand shot out and he grabbed a handful of my hair and ripped it out. Thankfully, it wasn't much hair, just the wispy parts that weren't secured by my ponytail holder, but wow, it HURT! What one wants to do in this situation is 1) yodel at the top of one's lungs, and 2)make sure the perpetrator (Ian) knows how very, very, VERY dissatisfied one is with this particular behavior. But we have found this very normal reaction is counter-productive. The more you show your frustration, the more his behavior escalates. The best thing to do is act like nothing happened.Trust me, when you see your son with a handful of your hair, this is hard. But I simply moved off the couch and went to sit next to John. I also put on a hat. When Ian was going through his really violent stage, we all wore hats. We were the hat family. I have very long hair, but Ian grabs for the hair on top of your head normally, so we have found that wearing hats is good preventative protection.

Fortunately, his little outburst was limited to that hair-pull and throwing some pillows around, and then he was O.K. (relatively). He was still anxious and hyperactive, but not violent. Soon we went upstairs to go "under" and all was well. This was a very small incident in the grand scheme of things, but I was a little dismayed as he hasn't pulled hair in a very long time. Sigh.

That's what John and I get for being party animals. ;-)

House decoration---Ian style

I have never aspired to be Martha Stewart. I would like my home to be relatively neat and attractive, but decorating, colors, furniture placement, draperies and fripperies are just not my thing. It seems to be more important to my husband, so I am happy to let him make most decorating decisions. He has a good eye. He, on the other hand, thinks this needs to be a cooperative adventure, so he encourages my involvement. So, I have wandered furniture stores trying to have an opinion about sofas that look incredibly similar to me. But this is all beside the point. The point being (yes, there is a point!) that our decorating decisions are completely determined by what we call "The Ian Factor." All furniture and decorating decisions have to pass the Ian test. Is there a possibility that Ian could dismantle, chew, rip, shred, eat, or stain the item concerned? If the answer is yes, we pass on to the next item. We obviously have learned this through trial and error. Lots of error. We have gone through 3 sofa sets. Ian tore the stuffing out of the first two sofas because the cushions were removable. We now have a sofa set that does not have removable cushions thus making it Ian resistant (we always say resistant, not Ian proof---that would just be tempting the gods!) For a long time, before we could save up enough money to purchase new couches, we wrapped the torn, stuffing-depleted cushions in blankets and secured them with diaper pins---it was just sooooo chic! We also had to put clear plastic strips on all the corners in the house, including the windows, as Ian took a shine to chewing on all available corners. It looked like a giant mutant squirrel lived in our house. In the basement, we had to create a room for our storage and the cats' litter boxes. One day we found Ian happily strewing litter and cat poop all around the basement---hence the new room. He also tore out  the insulation in the basement. We tried all sorts of wiley ways to keep him from doing this, but he out witted us every time. We finally decided just to take it all out. Not as energy efficient, but better on his tummy (yes, he ate it.) Ian's room has had the most renovations: we had to take out all of his furniture (he would take out all the drawers from his dresser and scatter his clothes about, he would drag his mattress off the bed, he tore his curtains down.) He also pooped and peed so often on his carpet, that we had it replaced once, and then we decided to just put down hardwood floors (they are "distressed" so if [and when] he throws his toys on the floor, scratches will be relatively undetectable.) He also has put great gouges in his walls, so these have been spackled and painted many times. I call his room the "mad monk" room, as it is very spare with just wrestling mats and blankets on the floor. All the upstairs bedrooms and the bathroom have locks on them so that Ian can't get in and do his thing. Woe to us if we leave a room unlocked! He once went through a phase of flushing items down the toilet. John became very adept at snaking out most items, but one time he just couldn't get whatever Ian had tossed down there and a plumber was called.Two hundred plus dollars and once pencil later, the toilet could be flushed again.

Now that it's Christmas, the usual Christmas decoration issues have begun. John loves Christmas. I mean he really, really LOVES it. He trims the tree within an inch of its life and has lots of baubles and bangles all through the house. Over the years we have tried to train Ian not to swipe items off the tree, but it's still a favorite pastime. Every now and then we will see him furtively creeping away from the tree with something in his hand---we say "Ian! Put it back!", and he reluctantly puts the coveted ornament back on the tree. This year he has two new behaviors. He has taken a fancy to biting the legs off the animals in my nativity scene (we have lots of lame and/or glued together sheep), and he seems to enjoy the fake berries on our festive Christmas centerpiece. But maybe he knows something we don't--the cat also likes to eat the centerpiece! Hmmm---maybe I should have a little nibble myself?

Sick

Oof. I just got over being sick with the stomach flu. Again. For the second time in as many months. I'm sick a lot. It's sort of what I do. I have a plethora of annoying health issues: mild (but annoying) chronic fatigue syndrome, mild (but annoying) fibromyalgia, Hoshimoto's thyroiditis, degenerative cervical disc disease, bulging discs in my neck with arthritis and severe, chronic (definitely most annoying) headaches, both tension and migraine. I list this litany of medical woes not to garner sympathy (although sympathy will not be rejected!), but to paint the background of a larger problem. Being consistently sick is a bummer on many levels. First, it just sucks to be sick. Hanging over the toilet into the wee hours of the morning orking up the day's food intake is not my favorite pastime. Neither is hacking up my left lung on a regular basis (there it goes---bouncing down the hall!), putting frozen bags of vegetables on the back of my neck and taking pills to control headaches and pain, and sleeping up to16 hours a day just so I can function. But the other, more serious problems are that I may lose my job, and my husband is stuck flying solo with Ian. My job (I work at a daycare center primarily with infants) recently instituted a policy that if you miss a certain number of days, you are fired. I am perilously close to that number. I need my job---I am helping put my daughter through college, and adding to the coffers of "Ian money." This is the money we use above and beyond what Medicaid gives us to help with respite services. This is one problem. The other previously mentioned issue is leaving John alone to cope with Ian. Ian is a tag-team operation. We both take turns monitoring where he is and what he is doing. When I am sick, John bears this burden alone. It is hard on him, but he has never complained. Never. He tells me he is tired (and he has just developed a sore throat and cough---he hardly ever gets sick), but he does not look at me with exasperation and say "God, Woman---could you ever just be HEALTHY?!" He accepts my weenie level of health and soldiers on. But I feel guilty. It's hard to feel guilty and get well at the same time. Guilt slows down the healing process. I know it, but can't help it. So, I take my vitamins, wash my hands religiously at work (there are always thug-like, gangsterish germs waiting to jump on me when my back is turned!), and rest. I also pray a lot. Mostly for my patient, stalwart husband, and that Ian will be mellow (ish) on the days I am seriously out of commission. Those reading this who pray, please do so. John is one of the kindest, most faithful, and dearest men I know, and I'm lucky to be married to him. But he is human, and I worry that he'll give out one of these days. For my sake, the world's sake, and Ian and my daughter's sake, I hope he stays strong for a long, long, long time.

Can't think of a G-rated title for this blog

Here comes a delicate subject. One for which I will have to choose my words carefully and make full use of various euphemisms to protect the innocent. How shall I start? Let's just say my son is passionately in love with a certain part of his anatomy. Need I say more? Having grown up with only a sister, and having never raised a "normal" son, I am unsure what is typical for the frequency of....communing...with this certain part of a boy's anatomy, but it seems to me that every two seconds I discover Ian busily involved with his "hobby." We are constantly saying "nice hands" when he is in public, and have been very firm in our insistence that he indulge in this behavior only in his room. It takes constant vigilance. When my daughter is home from college, she will come into the family room rolling her eyes and say "Mom, Ian is doing it AGAIN!" As long as he is in his room, that is fine, but he has no compunction about "whipping it out" when he is outside in the backyard. I cringe when I think that he may be giving little old lady neighbors possible heart attacks! Many are the times I have rushed outside yelling "NICE HANDS! PUT YOUR PANTS ON!" I'm sure the neighbors are thrilled.

Last night Ian had a difficult time falling asleep. This happens on a regular basis. He was partying in his room until 1:30 am. My husband went to check on him, and then came in and said "Uh, I may need your help." Ian had removed his sleep pants and diaper so he could have free access to that particularly adored body part, but had also deposited a nice neat pile of poo in the corner of his room (along with a nice sprinkling of urine to complete the effect.) I was half asleep as I trudged downstairs to get the paper towels and cleaning fluid. John had sent Ian into the bathroom where he completed his....activity...while we cleaned up the poo and pee and checked to make sure there weren't any more deposits anywhere else. I sighed heavily. Cleaning up poo is a bother, but what sometimes really upsets me is the fact that I have such intimate knowledge of my son's intimate life. How many mothers of 18-year old boys actually SEE this activity?? Sometimes I think my eyeballs are going to burn out of my head. Oy vey. But this is our life. Ian has no shame or body self-consciousness. In one way this is so dear, innocent and wonderful. But trying to train him to keep his private activities private has been a long, uphill battle.

Ian did finally fall asleep around 2:30 am. Thank God. We can always hope for a sleepy boy tonight.

Feelers

Yesterday evening I was giving Ian a bath and my husband came in to talk to me about something that was both painful and frustrating to him. Suddenly, Ian tried to pull me into the bath with him. His eyes clouded, he started breathing heavily, and his lips assumed the position we call "bird lips" His lips get very tight and small. These are all signs he is upset and sad. We realized right away that Ian was picking up on John's emotions. It's very strange---Ian can pull his hair out, gouge deep valleys of sores in his skin, and even have a rotted tooth for months that we didn't know about, and show no outward signs of being in any kind of pain. His pain threshold is stratospheric! But he is exquisitely sensitive to emotions---particularly his dad's. We immediately reassured him that all was well, that daddy was not angry with him and then asked him if he wanted to go "under."  That is our term for the comfort measure that seems to work the best with Ian. All three of us pile in our bed, with Ian in the middle, pull the covers up and commune silently. Ian will look back and forth at each of us, and if our expressions are benign, he will start to relax and smile. Sometimes it takes quite a long time for him to reach a place of peace, and we'll just hang out in the bed until he is comforted. It helps to have reading material handy for the long hauls. Anyway, I got Ian out of the bath, into his jammies, and off we went to get "under." He was still breathing heavily, still had bird lips, and still had tears in his eyes. He spent the first 10 minutes or so gazing at John, and John looked at him with a loving smile. Eventually, Ian relaxed and pulled the covers over his head. Fortuitously, we had Christmas music playing downstairs that we could hear, so John and I just enjoyed listening to that while Ian collected himself. We stayed under for quite a while. It was very zen. There was nothing to do but wait, listen to music and cuddle Ian. Eventually, all was well and Ian was ready to go about his Ian business. Ian definitely has advanced case of "feelers."

Anger

I think I should write a little about this uncomfortable subject. Anger is a rather verboten subject in general, and certainly VERY verboten when you are discussing children, and VERY VERY verboten when discussing anger with special needs children. If you want to read excellent essay on anger, read chapter 9 in Anne Lamott's book Plan B, Further Thoughts on Faith. For my own part, I am a relatively laid-back, mellow, good-humored individual. But when I blow, I blow. Talk to my husband. There have been times (usually in the middle of the night) when I just lose it altogether...I can remember one time in particular: Ian had smeared his poop all over his mattress and I was all for throwing the damned thing out (the mattress, not Ian.) John was in favor of trying to clean it. I started doing this weird jig-like manic dance all over the kitchen floor while yelling at the top of my lungs. My husband just stared at me in bemusement and waited it out. As quickly as I blow, I diffuse, so of course, I started laughing at my ridiculousness. I am a redhead. These things happen.

Where Ian is concerned, I am often amazed at how patient I can be. But I better not pat myself on the back too vigorously, because there are those "other times." Let me describe the most recent one:

John was rubbing my neck (I have arthritis and bulging discs and degenerative disc disease in my neck--fun times), and it caused me to have a sudden massive headache. Right at this moment my daughter tried to contact us via Skype, but we had some technical difficulties, so I told her to call me on the phone in a few minutes as I was heading upstairs to lie down. As I was heading up the stairs, Ian came home, and he was in full-tilt LOUD mode. He was just a-roarin' and a-shriekin' and a-yodelin' to beat the band. I escaped upstairs and became prone on the bed while holding the phone in my hand in anticipation of my daughter's call. John came upstairs to check on me with Ian hot on his heels. Ian stood right next to me and BELLOWED in my ear at the top of his lungs. I lost it. I mean I really lost it. I shouted "SHUT THE F*** UP!!!" and threw the phone at him. There was silence. Ian looked at me like I had grown another head. I was drowning in guilt and shame. Ian crawled in bed with me and put his head on my chest and I wrapped my arms around him. I thought "I just cursed at my disabled son. I'm scum." But this passes. I am human. I get angry. Sometimes I get angry at my beautiful aggravating special needs son. For the record, I have only seen my husband get angry at Ian a handful of times in his18 years, if that much. What sets him off is when Ian hurts me. One time Ian grabbed me by the hair and was yanking me around the bathroom. I called for John and he pried his fingers out of my hair and then held on to Ian's shoulders and shouted in his face. It's so rare for John to express anger that I was stunned. It upset John so deeply that he had to go to bed.  John is probably the best man I know: gentle, kind, even-tempered. But he has his moments too.

Dec. 10---My husband's Christmas Letter

My husband writes a very witty and wry Christmas letter almost every year. It is not your usual my-child-is-brilliant-and-everything-is-rainbows-and-sunshine type letter. It's honest. But funny. Here is his bit on Ian:

Ian is Ian, challenging, amazing, exhausting, enlivening, and all that before breakfast. He is 5’10”, 150 pounds of pure muscle. His functioning is about the same, non-verbal but certainly not non-vocal.  He has developed a cry that is very reminiscent of a pterodactyl. He is very good at it and likes to practice it---often.  He went through a very rough patch last fall and we had to get crisis services (he was just out of control, gouging huge sores in his face, pulling out large patches of hair, hitting, pulling our hair, kicking, I was using Judo holds I had learned when I was six!).  Luckily we had a secret weapon—drugs.  First, we gave him larger and larger doses of Xanax, which paradoxically (a key concept with drugs and Ian) just seemed to make him angry, not relaxed.  But, all was not lost, it did do something, it lowered his seizure threshold, and he had a grand mal seizure!  That will get your attention.  But we were undaunted (Ian’s psychiatrist is the Chief of Psychiatry and a world renowned expert on autism).   Next, we used Risperdal, an antipsychotic, guaranteed to calm him down, after all this class of drugs is also called the major tranquilizers.  By the second day on half the minimum dose he was basically having a continuous tantrum, completely out of control, i.e., not tranquil.  This was somewhat less than the reaction we had hoped for. Luckily we were undaunted. We next tried another antipsychotic, but we were very clever this time. We used 1/8^th the minimum dose so we could gradually titrate the dose without side effects—brilliant no? Within two hours of the first dose he was so out of control Katie and I had to manhandle him to wrap him up tightly in a large blanket and hold on for dear life. After two incredibly entertaining hours, and several bruises all around, he fell asleep and had stopped frothing.  We were daunted.  Luckily I knew some psychologists and with good behavioral measures, he is now only difficult, and no longer impossible. Whew!

Dec. 10--Michael Jackson and Stevie Wonder

If you want to get my son groovin' and movin', just put on music with a beat. A nice strong beat---and turn the music up FULL VOLUME (we are always monitoring our speakers for possible blow-out!) It really is a treat to watch him; he has his own idiosyncratic way of dancing. He either rocks wildly from side to side, or backward and forward (very reminiscent of the davening prayer practices of our Orthodox Jewish brethren [no disrespect intended whatsoever!)]) What amazes us is that he doesn't knock his head on anything while performing his wild tribal dances. He seems to have a very good spatial sense, and knows when he is close to tables, chairs and walls. We pump up the music every morning on school days to inspire him to be up and at'em. I'm sure the neighbors are wondering why our walls are bowing in and out! Sometimes I'll dance with him, although I have to perform a much more moderate version of his energetic dancing style---I would pull something for sure! He always delights in this. It's like he's thinking (All RIGHT! She's joining in MY world!)

Musical Beds

Bedtime is interesting at the McGrew household. Around 9:30 or so, we head upstairs with Ian and he jumps in our bed and burrows under the covers. We rest with him for a little bit (yes, it's crowded. Ian is 5'10" and John is 6'3"...I'm usually clutching precariously at the edge of the bed with Ian's feet in my back!), and then I usually bail out and go sleep in the guest room. At some point John bails out and either sleeps in a recliner in our room or on a mattress in our walk-in closet. We used to be able to persuade Ian to go into his room after some cuddling time with mom and dad in the evenings, but he has become adamant about staying in our bed. Some hours later, Ian usually gets restless and/or loud and John manages to put him in his room. A few hours after that, he comes back into our bed. Sometimes he pees our bed, and then there are many sheets and blankets to wash. LUCKILY, we invested in this way-cool mattress protector when we purchased our oh-so-comfy new mattress. And it WORKS! Hey, maybe that's why we can't pry Ian out of our bed---I'm telling you, this is a really comfy mattress!

Poop

Yep, poop. It's a recurring theme in our lives with Ian. Last night Ian had a wee bout with diarrhea. I washed a pair of pants and undies, but luckily there weren't too many accidents. This morning when I went to the basement to get more milk from the fridge, I noticed some very suspicious goopy brown blobs on the floor---yep, you know what they were! Fortunately, Ian had the presence of mind to deposit them mostly on a remnant piece of carpet, so I just folded up the offending carpet and threw it away. Then I set about scrubbing the floor. This is exactly what I wanted to be doing at 6:00 am on a Thursday morning. The funny thing is, John and I deal with all this in a very ho-hum, just-another-blob-of-poo manner. I just yelled up the stairs "Ian crapped in the basement. Please come down and watch him so I can clean it up." We are so blase about things that would send normal folks into orbit. We are not normal. LOL!

Trichotillomania

Prepare yourselves for a big word, and one that is fun to say: trichotillomania. Ian has it. It means pulling out your own hair. Ian is quite adept at it even though we shave his head Marine Corps short. I noticed a few more patches which means we have to be more vigilant about keeping his head shaved. It's quite the process shaving his head---we put him in a chair and I just go to town as fast as I can with the clippers, all the while plying him with jelly beans as incentive to stay seated. I've become quite adept at "the quickest shave in the west!" Ian also is prone to self-injurious behaviors, meaning he picks at his skin until he develops sores. Knock on wood (and praise the Lord), this has been better lately. Perhaps the screaming is taking place of the picking? Oh boy!

Yesterday was a pretty good day for "our Bug" (our nickname for Ian), but not so good a day for mom. I have been struggling with increasingly severe headaches, and went to see a new pain management doctor yesterday. My husband kindly offered to go with me and we drove separately so he could go to work afterward. When he stopped at a light, I was distracted for an instant and ran right into his back bumper! We now have to get both our cars fixed. Sigh. Then the doctor was two hours late, and although very nice, she manipulated my neck and caused me to have a whopper headache. Off I went to work anyway, and just went to bed early hoping for the best. I feel better this morning, but it does make me feel a bit wary about taking her on as my doctor. Luckily, when I bailed on John to go to bed, Ian chose to just calmly fall asleep on the couch while John read. And he only woke up once at 4:00 am. Thank you, Ian! The night before he was up between 10 pm and 11 pm, and between 4 am and 6 am. We take the blessings and the breaks when we get them!

Dec. 5

I think Ian is going through a somewhat manic phase. He can't seem to sit still for even a minute---and he used to sit for at least a short while to watch his movies or just "chillax." Last night John and I rented Toy Story 3 thinking Ian would enjoy it (he likes the other Toy Story movies), but he was jumping around like a Mexican jumping bean all evening. At one point he went upstairs, and suddenly it got quiet---too quiet--so I went upstairs to check on him (we keep all our upstairs doors locked so he can't go into bedrooms and wreak havoc. I often feel like a housekeeper of old with a ring of keys on my belt.) He was happily ensconced in front of the linen closet throwing out all the towels and sheets, and then taking off the tiny little rubber thingies that are on the ends of the metal shelves (this is hard to describe). We spent the next half hour reassembling the linen closet--I guess we'll have to get a lock for THAT also! John also took out the light in Ian's room as he was happily jumping around stark naked in front of the window (we can't have curtains in his room as he tears them down. In fact, I always describe his room as the "mad monk" room. It just has wrestling mats on the floor and lots of blankets---he smears his feces so often he ruins mattresses. There is also no furniture in his room as he dumps out all his clothes.) BUT, he was a happy little man all night---just hyper. Well, he's not so little--he is now 5'10" and 153 lbs (to my 5'3", 110 lbs. Because of this height and weigh disparity John has to deal with all the really physical interactions with Ian. I'm still able to bathe him [although I usually get almost as wet as Ian!])

Kandace

I feel I should mention right away the blessing we have in our medicaid-funded caregiver. Her name is Kandace and she has been with Ian for around 10 years. She is a marvel with him, and loves him like her own. Her whole family is involved in his care and takes him everywhere. They take him to their church and out to dinner and even to movies. Her patience and dedication to Ian is astounding and awe-inspiring. I am acutely aware of how lucky we are to have her, and how terrible it would be if our funding were cut and she was no longer available to us. I literally don't want to think about what would become of us.

A little overview

In light of the current political climate (not one particularly given to charity or generosity), my husband suggested I keep a daily log of life with Ian ( given the very real possibility that medicaid could be cut, and we would be without services for Ian.) So let's see----last night, Dec. 3, 2010:

Lately Ian has developed a fondness for being loud. I'm not talking about normal, a little bit excessive loudness, I'm talking shrieking at the top of his lungs over and over and over. We have had emails from school complaining about this, and the bus driver and his caregivers have mentioned it many times. It is ear-piercingly, bone-rattling LOUD. Sometimes he seems agitated when he is screaming, and sometimes he seems to be screaming just for the feeling in his throat---something we call "stimming." Typical autistic stims are hand waving, tapping on hard surfaces, rocking back and forth, etc. Ian seems to like screaming. Lucky us.

John and I tried to watch a movie last night. Watching movies is an interesting experience chez McGrew. Our 22-year old daughter no longer will watch movies with us due to the constant interruptions. We have to pause the movie frequently (at least every 5 minutes on average) to attend to Ian. And since he shrieks so much, we have taken to putting on the subtitles so we don't miss the dialogue. John went upstairs several times to make sure that Ian wasn't naked in front of his window with the lights on in his room. This is a favorite activity. He also likes to go in the basement, take of his pants and smear feces or urinate on the floor.  Needless to say, we don't watch too much T.V. and most movies take us two to three evenings to finish.

Last night he was particularly and persistently loud. We put him to bed around 10:00 pm (we were exhausted by then), and Ian jumped around and screamed in his room for about an hour before John went to see him and sat up wtih him for an hour. He put him back in his room at midnight and he slept until 3am. We checked on him and he had ripped off his diaper. We put on a new one and put him back in his room.  He yelled intermittently until 6:30. During that time we checked on him frequently to make sure he was O.K., and had not pooped in his diaper. He tends to smear if we don't change him immediately. At 7:30 John finally got up because Ian was so loud. And this is after his nightly dose of melatonin (a sleep aid) and xanax. He was again without his diaper and had peed all over his bedding. John got Ian dressed and started a large load of laundry.

This morning (Dec. 4) I am typing this while my husband watches Ian. I am listening to the "dulcet tones" of his continued screaming and trying not to focus on the bad headache I feel coming on. At least he seems happy today, and is watching (off and on) one of the Disney movies he loves. I try to live one day at a time, with God's help, and pray that we will continue to get the help we so badly need. I live in fear that the rug will be pulled out from under us, and then I know I would be unable to care for my son at home. This loud, complicated, difficult boy that I love with all my heart.

Dec.4 (evening) I have to mention something cute: we let Ian out to play in the snow. He was possessed with brushing the snow off of every horizontal surface---it was so funny. He was so focused on his very important task! He became quite frustrated that as soon as he had one surface clean, it would become covered with new snow almost immediately. I'm certain that if we didn't make him come inside, he would still be out there cleaning off snow. LOL! Of course, when he came inside we had to change his very wet pants.

What a wild ride!

So, I have been encouraged by a few gracious and kind friends to blog about my life with my 18-year old autistic son. So here I go. I started putting a few things on my facebook page, which I will just paste here to begin. Just let me say, living and loving someone with severe, non-verbal autism has been nothing short of a wild, wild ride. Some days I'm riding with style, and some days I'm just hanging on for dear life. I am extraordinarily lucky to have a truly saintly (but not TOO saintly), humorous, intelligent, creative and dedicated spouse to ride with me. I could not do this without him. Not in a million years. We are also fortunate to have medicaid funded help---I would be lost without our wonderful caregivers. No really, LOST. I am grateful down to the bone for the daily help. O.K. We'll see how this goes.