Monday, December 29, 2008

Next exit-20 miles

We seemed to be traveling into another dimension...a dimension not only of sight and sound..but of losing my mind...There's a signpost up ahead.."Next exit- 20 miles"

Christmas eve in a mini-van. A mini-van with four bouncing overly excited children. Santa was coming-tonight! . We were on our way home from a happy family outing. We had done a little shopping, had lunch, the kids even got balloons. We were a joyful bunch, ready for a quite evening of cookie baking and bed. I happened to glance out the window to see a sign stating that our exit was in 20 miles-and at that exact same moment I heard a pop. My five year old daughters balloon had died. It was going to be a long ride home.

"Lily, a balloon is nothing to cry over.."

It's just a balloon...there will be more balloons in your life-I promise"

" I know you loved it..please stop screaming at your sister"

"Zoe don't cry..Lily please stop screaming.."

"I'm warning you...don't throw that...Lil..don't...!"


"Lil you CAN'T throw things at papa's head when he's driving..we almost hit that car...please stop screaming..Sammy!-why are YOU crying?!!!"

"Honey, we are o.k.-no one was hurt...she just can't throw things ever"

"Lily PLEASE stop screaming"

19 miles until our exit.

At this point, I want to cry. Lily is screaming, Zoe is crying, Sammy is crying, my husband is tense...I'm thinking about jumping out the window(and crying)..When all of a sudden, amidst all this chaos, Oscar starts to sing. In his raspy, slightly off-key voice, he is belting out "jingle bells".. In the two seconds that Lily stopped to catch her breath, I asked him, "why?" He said "It's Christmas, I want to cheer us up" I looked at my husband, who was as perplexed as I was..Who was this boy? Where was the kid who freaked out at times like this, who hated loud noise and chaos? When did this change occur, and why hadn't I noticed...did something happen when the balloon popped? Was I somehow in another dimension...had we entered the twilight zone? This was so unexpected and so out of character. On any other day, it would have been us trying to calm Oscar, not the other way around. On any other day, Oscar would have been screaming right along with Lily, if not, louder. On any other day, Oscars behavior would have made that last 19 miles feel like 19 years. But this was not any other day-it was today, it was now and it was spectacular. Sometimes, especially on days like that one, it is better not to question..Sometimes you just need to accept the unexpected.Sometimes your kids bloom when you're not looking...I saw no other option but to join him in singing-we all did. Boisterously. Except for Lily, who continued to scream the rest of the way home.(also boisterously) What a wonderful and unexpected ride that turned out to be. What a wonderful and suprising boy our Oscar is(and always was). His song was a wonderful present-on so many levels.

The next morning, after the kids had opened all their gifts, Sammy turned to me and said "I heard noises on the roof last night. I think it was Santa." Maybe..or maybe it was Rod Serling, holding a balloon. I'm certainly not going to question it.

Monday, December 22, 2008

acceptance is as acceptance does

Twas three days before Christmas, and all through the house, not a creature was stirring because they were all terrified of my children who are so wound up, that you could plug them into a generator and power a small city with their vast amount of energy.

As I write this latest chapter, I am looking out across the 4 feet of snow that has fallen. There will be no school today.( May God have mercy on my soul.) Thankfully, this year, we hired someone to plow our driveway. I can't help but chuckle knowingly to myself as I gaze across the road at my neighbor, who is trying to shovel out his driveway. (hahaha amateur) I looked very much the same way last winter. Lifting up what feels like 500 pounds with my shovel, and then stopping to look around with envy at other peoples plowed driveways. Lifting up another 500 pounds, stopping to look again...thinking "Why won't this end?" "Will someone(preferably with a plow) make this go away ?" But not this year. This year, I am an insider..I won't be outside fighting an endless sea of white. I have experienced the snow shovel life, and I accept that it is not for me.

Experience is everything. It shapes who we are, how we behave and eventually who we become. It is through experience that I have learned what acceptance really means. It is one of the reasons I write about my family the way in which I do.

I have received many positive comments about my blog. I thank each and every one of you for reading and commenting on our many adventures. There have also been some negative responses. Comments from people who seem to be uncomfortable with what I write. Thinking perhaps that I give too much information, am not serious enough, or that I shouldn't write in such detail...i.e. shaking and eeeing, repetitive language and potty training. That I am making fun out of such a delicate subject. That this is somehow disrespectful of my children's privacy. I am sorry that you think that way, but you couldn't be further from the truth.

Should I write only of socially acceptable achievements? They made a friend? Read a story? Didn't freak out on the bus ride home? Yes, all of these are wonderful accomplishments, and I think that any parent with a child on the spectrum longs for such moments. There is however a big difference between celebrating those moments and celebrating your child. I will not be a "bumper sticker mother" You know, having a bumper sticker that says "my son is an honor student etc.etc. That is not acceptance-but rather" in your face" vindication. I am not saying that there isn't a place for those moments, but rather, that those moments make up only a part of the whole experience. How can I ask the world to accept my children when I only discuss the accomplishments? The differences are what the world notices. I can't ask for acceptance without understanding. I can't ask for understanding without discussing the experience...poop and all.

The eeeing, repetitive language, freak outs etc. are all a very real part of our life. As for my humor...When you have unclogged a toilet stuffed with "Thomas the tank engine" toys for what feels like the 400th can either find comedy in the situation or you can cry in frustration. I choose laughter. I am not ashamed or embarrassed by my children's behavior. I am however at times perplexed by it-which is why I do the things I do, i.e. eeeing with my son. I long to understand as best I can this part that makes my boys-my boys.

My family is very aware that I write about them in this weekly blog. This is my way of telling the world just how blessed that I am. There is no shame whatsoever in the stories that I write. I might be mortified at times (see Christmas tree story) and I may be a bit too graphic (see potty training story) But the underlying message is one of joy and love and acceptance. It is our adventure and I wouldn't trade it for the world.

As I begin to wrap this up, I am noticing my neighbor having his car towed over the four foot mound of snow blocking his driveway.....Experience is everything.

Monday, December 15, 2008

Christmas tree $30.00, invoking the name of Santa-priceless.

Of all my childhood recollections, the most vivid revolve around Christmas. The tree, the toys, Santa...all of them conjure up wonderful memories of my earlier days. For a kid, it can be the most exciting, suspenseful time of year. For a parent, it can be the most powerful. Powerful, because of one simple phrase..."Do I need to call Santa?"

Nothing works better at eliciting good behavior than the threat of calling Santa. "If you don't put down that ornament, I'm calling Santa" "Your not going to bed?!...lets hear what Santa has to say about that." Sometimes I go as far as picking up the phone and dialing. The slightest infraction, the tiniest misstep all I have to do is mention his name in order to get the desired response. "NO! don't call him!"..."I'll go to bed"..."I won't draw on the dog!"..."I'll get out of the washing machine!"..."I'll clean up my toys!"... Oh how I love that man! I admit, I have gotten heady with the power of it all. Power, however, like most good things can be abused. Use it too much or wield it too carelessly and the threat starts to wear off, the message loses its luster.

I learned this lesson while picking out last years Christmas tree. Excited about getting our tree, we piled into the mini van, all of us in high spirits. We were a happy family in search of the perfect tree. The gentleman selling the Christmas trees was a portly fellow. That in itself is nothing my children would comment on. It was however, the fact that his underwear happened to be sticking out of his ill fitting pants that got all of our attention-particularly Oscar. Once Oscar sees something-something that catches his eye....he MUST comment on it. He is like a dog with a bone-he CAN NOT let go. Knowing this, I tried to gather Oscar to my side before he could say anything....but it was too late. Very softly, in a low robotic voice, Oscar started saying "unnnndddeeerrrwwwweeeaaarrr"(repeatedly) This of course started my other kids laughing..I turned to them and in my sternest mother voice said "Should I call Santa?" and quickly ushered them back into the van. I thought it had worked, that I had averted disaster...but I was wrong. We still needed to tie the tree to the top of the van, and who was going to help us to do that? You guessed it-the portly tree salesman in the ill fitting pants. Now in order to tie the tree to the top of the van we had to leave both side doors open-and sitting on one of those open sides was Oscar. There I was, on full red alert mother mode -trying to catch Oscars eye, ready to invoke the name of Santa, but he was distracted. Through the side of the van, looming just above him, hanging out of his shirt, was the salesman's belly... it was big , it was hairy and it was an inch away from Oscars nose. As I looked on in horror, I started to say "Oscar, think of Santa", but it was once again too late. He glanced at me, and with a gleam in his eye...he said in a very low voice, "Bellllllllyyyyy" as he was ever so slowly reaching up to touch it with his pointed finger. Just in the nick of time, before Oscars finger could reach its destination, the tree was tied on, and the man and his ill fitting pants (and too short shirt) stepped away.

In my relief , after my heart rate returned to normal, I realised that the pull of underwear-the lure of a big belly, these things were even more powerful than the repeated threats to call Santa. That as my kids become more aware of the world around them, and less immersed in the world of our home, my days of Santa threats were numbered.

I wonder if my kids will look back fondly on these Christmas memories-the way I look back on mine. Will they even remember all of these adventures? I was thinking about this yesterday when we went on our Christmas tree quest. This year, getting the tree was uneventful, although when we suggested going back to the same tree lot as last year, Oscar grinned and said "unnnderrrwearrr."

Saturday, December 6, 2008

That which does not kill me makes me thankful....

" Girls! Leave the table cloth on the it is NOT a cape!

put it on the table..THE TABLE not your HEAD!

It's for Thanksgiving....Why? because it makes the table pretty...

No it is not a sheet! It is a Table Cloth...FOR THE TABLE!

THAT'S IT! If you touch it again, you won't have cookies UNTIL YOU ARE 47! "

Thus begins our Thanksgiving celebration. Like most families, we gather around the table to feast on Turkey and all the sides. The only exception being that our holiday feast includes frozen pizza. Frozen pizza, because that is one of the five things that my boys will eat, and they had already met their quota of peanut butter and jelly for the week.

Thanksgiving is often a time for family traditions. One of my children's favorite traditions is arguing over where they will sit. Actually, they do this at most meals. It just seems more festive on Thanksgiving being that there is a table cloth involved. My tradition is to ask everyone what they hope the next year will bring, and what they are thankful for. The answers from my kids vary from "I hope the next year brings toys", "I am thankful for toys" to "why is this sheet on the table? " and "I am thankful for this sheet". I try and set a good example by saying that I am thankful for my family, for having this wonderful feast and that I hope that the next year is as wonderful as this one has been. I am also secretly thankful that the table cloth is still on the table.

This year we we did things differently. As per my oldest son Sammy's school assignment, we were to go around the table and give thanks for things we wouldn't normally be thankful about. For example, being thankful for a mortgage, because it meant we had a roof over our heads, or being thankful for homework because it meant that you were learning. Sammy turned to me and said "I'm thankful for you mama." and continued to eat his pizza. Now I could take that one of two ways...he either didn't understand the assignment or he equates me with the mortgage. My ego chose the former.

As I later pondered the idea of this assignment, I asked myself what am I truly thankful for? The obvious things of course, we have a house, a steady income, four unique children, two of which happen to have an asd. What would I normally not think to be thankful for? Should I be thankful for autism? It has shaped who we all are. How we behave, how we think. Wasn't it Nietzsche who said "That which does not kill you makes you stronger"?( Then again, Nietzsche wasn't a stay at home mom.) On one hand, how could I possibly be thankful for something that has at times caused my boys such angst, and on the other, that angst has in part made them the incredible people that they are. From their struggle, we have all grown. I know that I am a better parent-a better person. I take little for granted, and I have much joy. For that, I give thanks.

That night, while I was tucking Sammy in, he once again said that he was thankful for me. I asked him why? He said "Mama, you help me to learn so I can grow up to be a good adult."and I thought, right back at you Sammy, right back at you. He did understand the assignment-it was me who got it wrong. Yet another thing to be thankful for.

And so another Thanksgiving has passed. There was a wonderful turkey, thought provoking conversation....and the table cloth stayed on the table. All in all, a great success- AND I still have a few weeks to figure out how to keep the GIRLS OFF OF THE CHRISTMAS TREE!

Tuesday, November 25, 2008

ask not for whom the potty flushes...

If karma is a boomerang and reincarnation is fact...Then I must have done something awful to a toilet in a past life.

It never fails...the moment we get into a store one of my herd always has to use the bathroom. Usually on a day when it is 9 degrees outside, so that my kids are undoubtedly bundled up in enough outerwear to provide warmth to a small village. So into the restroom we go-all of us. Because the minute one has to go, they all have to. By the time everyone has finished, washed up and re-dressed, it is spring. They no longer need their outerwear, and I am stuck carrying it around the store.

I really can't complain. There was a time when I thought none of them would ever be potty trained. I had visions of myself following them to college or down the aisle carrying wipes and pull ups.

All of my children struggled with potty training. One of my boys however, had the hardest time. He was not fully potty trained until he was five and a half. It was at first a battle of epic proportions. I very much wanted him to do something that he had absolutely no interest in doing. To this day I still don't know whether it was a sensory issue, a control issue or a little of both for him. Regardless, he just did not get the point of pooping in the potty.

At first we tried everything and anything we could think of. Rewards, threats, books, candy, vacations, cash (I was desperate)...It got to a point that I would have done ANYTHING to get him to use the potty. Nothing worked. In fact, the more persistent I became-the more resistant he was. It became the single most important accomplishment to me-and that was the problem. I made this issue all about myself, totally disregarding my sons needs or wants. I needed to look at this from my sons point of view. Everything I had been doing, the bribes, the threats, etc. had only created anxiety for both of us. I needed to step back, to reevaluate, to come up with a new strategy. This was not about me, but rather, about him. How could I help him to understand that using the potty was an important accomplishment. That staying in diapers would only hinder him...especially when he started going on job interviews...

The sensation of sitting in a dirty diaper did not bother my son. I had to find a way to connect that sensation with something that would bother him. Something that would make the connection in his brain that said "being poopy is bothersome". As he is pretty regular, this step was not hard. I would simply make sure that he was engaged in a favorite activity when the time came. If it was a movie, I would turn it off , or I would remove the favorite toy he was playing with, all the while calmly saying he could have it back after he was changed. This was not always easy-tantrums did ensue. I did not give in. Instead, I would calmly suggest that using the potty would not take him away from his favorite things for so long .After a week or two of this, he was more compliant. The next step I took was having him change himself. This step is NOT for the weak of heart, as poop can be rather appealing in look and texture to some people.(as a side note and point of interest, poop can remove paint. It should also never, ever be in the vicinity of ceiling fans or any other type of fan. period) I LEARNED to always make sure he changed himself in the bathroom-dumping said poop into the potty. (another point of interest-once a child learns to flush-hide all small objects. On the positive side-my husband and myself have mastered home plumbing projects.) Gradually, over about eight months time, my boy made the connection that pooping in a diaper and changing himself took far too much time away from his favorite activities. On June 16th, 2006 at approximately 2:48 p.m. he used the potty successfully-and continues to do so.
So now when I find myself with a herd of kids in the supermarket bathroom, I find it hard to justify complaining too much. Although, if they could all just "go" before leaving the house...alas, I am not a miracle worker.

Friday, November 21, 2008

flying boy

The breakfast table in my house on most mornings is noisy and chaotic. Three of my four kids are simultaneously eating, getting dressed, packing back packs and fighting over who is going to sit where...everything you would expect a herd of kids to be doing on a typical school day. All except Oscar. Oh he may argue on occasion about where he wants to sit, but for the most part breakfast is one of the two quiet times of the day for him. Bedtime being the other.
Oscar is my wild boy. He is constant movement, a ball of endless energy. He moves because he must. To me it is almost like his movement is his way of staying here, being grounded, as if stopping would cause him to fly away.On the other hand, there are days when he beats his arms so hard and so fast, I am afraid he is going to take off. He likes to make noise on these days. A constant EEEEEEEEEE sound-likening him to a plane reving its engine. I asked him once why he does this. He told me that"I have to- it feels wonderful!" So I tried it. I started slowly at first, just a little arm movement a small eee sound...until I really let myself go. Soon I was so lost in the movement and sound, I did not realize that the rest of the family had joined in. We looked like a scene straight out of an anthropologists journal-or a mental institution for insane dancers. This went on for a few minutes until Oscar asked us to stop. It was brilliant, and it DID feel wonderful. I don't know that I received the same benefit that Oscar does, but in that short moment, I could understand his need to do this. If only others could.
Oscar had his first experience with how other people view him at school the other day. Two of his classmates told him that his brain was broken and needed to be fixed. He was upset when he told me this. Although his response of "I'm not a robot, I am not missing parts" was very cool. He was hurt.The interesting thing is that Oscar was not upset at the girls. He was upset at how they percieved him. It was the first time that Oscar expressed awareness of his impact on the people around him. He realized that he was part of the group and not an entity unto himself. For that I was happy-the other part of me wanted to yell at those girls.(I can't help it-I'm a mother!)
We use the word different a lot at home. We teach our kids that different is good-something to be celebrated. If you opened a box of crayons and they were all blue, it would be boring. At school a similar message is taught. We are all different, some people learn differently than others, etc.etc. I think that we need to take it further. Oscars classmates comments are proof of that. I do not think that those girls were intending to be mean. Oscar certainly did not see it that way. Oscar IS different-his words, his actions, his movement is unlike any of his classmates-they are going to notice. They are going to have questions. Unfortunately in our quest to teach acceptance we don't allow questions. It is almost as if we are saying-"you can be different, we just won't talk about it" Is that acceptance? I don't think so. I think that we are missing an incredible teaching opportunity. Autism is nothing to be ashamed of. But, how can you say that-if you are not allowed to explain it.
For now I have to live with the limits that the word "different" seems encumbered with. There is so very much that we can learn from each other. Just looking at my curly headed flying boy, all that he is, all that he is becoming, how can we afford not to.

Wednesday, November 19, 2008

I didn't see it on Oprah

It astounds me how slanted the media is in portraying autism. If one were to believe all that the mainstream media offered on the subject, they would think that autism was the absolute worst most god awful thing that could happen to a child. When was the last time that you saw the words "autism" and "optimism" together? With the exception of speaking about a cure...probably nowhere. Ask the people around work,the grocery store, etc. Ask them what they know about autism. I would bet you that at least 90% of the time you would be told that it was a tragic disorder wreaking only havoc on the lives of parents and children who live with it. Ask them how they know this. You might very well be told.."I saw it on Oprah"
Well if Oprah said it-it must be true!Because she's a celebrity. Now, I have never met Oprah, and she has never met my kids, but according to her I am "heartbroken" by this tragedy. I am? Look, I am not saying that raising a child on the spectrum is easy. It can be hard , frustrating and demanding-but equally so, I have experienced love and thankfulness and pure joy on a scale that I never knew existed. Why don't you see that on Oprah? Why does she have so much clout? I mean come on now...She publicly refers to her vagina as a "va jay jay" and we take her seriously?

We need our own celebrity spokesperson...I had had hopes for Jenny McCarthy until she opened her mouth( on Oprah). When you refer to your boyfriend as the "autism whisperer" and claim that you made a deal with god "cure my son and I'll show people the way." The only adjective I can use to describe that is-YUCK. And yet people listen to her too.Is it because shes a celebrity? (I wonder if she has a va jay jay as well?) I am not looking for an autism messiah. Nor am I looking for a cure.

I think that we do a disservice to ourselves when we start referring to people as a disorder-instead of people who are just different. I wonder how these kids whose parents were on Oprah, how Jenny McCarthy's son...and anyone else whose parent focuses solely on the negative are going to view themselves when they get older. As a burden? As a cause of their parents anguish? Oh, I have heard the argument that these parents are just doing anything they can to help their kids...but I wonder, do they even SEE them?

Thus our need for a celebrity spokesperson. Someone who can stand up and say-We are talking about people here, What can we do to promote understanding and acceptance? How can we make our schools better places for ALL children.How can we create a better world for all people? Someone who can call a genital a genital. Va jay jays need not apply.