Where does the time go, I mean, really, WHERE?

How did it get to be the end of summer with the kids going back to school this week? I haven't sat down with this blog since February and I can't figure out how that happened. I know I was in full craze mode working as hard as I could to make enough money to pay the bills and keep the house and take care of the kids and advocate for their needs and trying to find out what was making my daughter sick and trying to find ways to keep my son from flipping his desk over and then trying to find the right alternative school placement that fit his needs and then adjusting to my husband being back at work (thank heavens) and getting everyone where they needed to be over the summer so I could work and flooded out basement two times in one month and three kidney stones and who knows what else.


And I know that before I realize it, a new year will be upon me and then another and another. I guess that is how life goes. We make the time to do what we feel is most important to us at that particular moment or what demands our attention the most at a moment.  


At this particular moment, Connor is doing his utmost to demand my attention to get on this computer and I am doing my darndest to ignore and write - this is not an easy task. 

Yes, I like to talk, alot

Yep, that's me having a conversation with someone in line to the bathroom, at the doctor's office or anywhere I find another person. I love meeting new people and enjoy listening to their stories. I learn so much and it helps me to see life from a new perspective.


Yesterday I was a bit nervous talking. My children's psychiatrist asked me to speak to about 100 of her medical students about my experiences with autism. As I stood at the bottom of this huge lecture hall, my nervousness went away. I was talking about my kids, and that is always fun for me.


I felt honored and hopeful to be asked to speak to a new generation of doctors. The medical profession is woefully uneducated about our kids and their unique needs. Wouldn't it be great if every teaching hospital had parents share a bit of their lives?

New Year New Me

Ahhh, a New Year brings thoughts of new beginnings. I hung up the new calendar - all fresh and clean. It is the future in my hands - all bright and shiny and full of possibility. And I see in this new calendar a new me. At the tender age of 46, I see a new me trying to fight it's way out of the old me, trying it's best to be born into this new year of possibilities.


The new me is someone who will take care of her body, mind and soul, instead of neglecting it at the bottom of a too-long list. The new me is someone who will take her time and enjoy the moment, instead of rushing by. The new me is someone who will stop, listen and play with her children, instead of worrying about completing some unimportant task. The new me is someone who will see her children as children, not as children with labels.


I think I like this new me already.

A New Thanksgiving Perspective

I took a look at my post from last Thanksgiving and I remember keenly how I felt that day. Life was so overwhelming for me that I couldn't even see the good in my life. This year I feel totally different.

I think a few things have contributed to my improved state of mind. First, I have come to  find some peace and acceptance regarding autism and my family. A lot of my anger has subsided, and this has allowed me to see my world much more positively. Second, I have been quite ill these last 6 weeks with complications from surgery. I couldn't even get up without my husband's help. I went from bed to bathroom to couch to bed - that's it. I couldn't interact with my kids or do the things I normally do with them. The last few days I have begun walking (albeit slowly and with a limp) without my crutches and I feel a sense of joy with each step.


All those sayings we've heard such as "it's always darkest before the dawn" or "you never appreciate what you have until you lose it" apply to me. Our family has made it through the darkest stage of grief and have found the dawn to be beautiful. I now appreciate the simple activities of life that I missed so much while sick and I also understand that life goes on even when I am on the sidelines.


On this Thanksgiving morning gratitude fills my heart.

Learning to Deceive

It's a typical childhood milestone - learning to deceive our parents! And I am pleased to report that Connor is trying his best to pull the wool over my eyes. Yesterday he came in from school and said, "I had good behavior. Can I go on the computer?" (The computer is a huge motivator for him.) I told him sure, only to be interrupted by my husband asking Connor if he had something to show me. It was so cute and perfect - Connor tried to hide his "yellow light" and then came over to me and tried to smooth it over with hugs. It was all I could do not to laugh. He has started to pretend that he is sick so he can stay home from school. He uses his best acting abilities as he coughs, holds his stomach or rubs his head. He also asks me to do something when my husband has already told him "no" - the old pit parent against parent trick.


I am so excited that he has learned this skill! Why? It shows me that he completely understands that he can manipulate me or the situation to get what he desires - quite a high level skill. I remember trying these techniques, unsuccessfully, myself as I was growing up. 


So as I write this, I am sitting with a smile on my face wondering what he will come up with next. 

The Futility of Worry

I know worry, all too well. It is one of life's constant companions for most of us. It may take different forms, but it is the same beast. It steals our peace of mind and replaces it with thoughts of dire situations and catastrophic outcomes. 


Worry came to visit me the other night around 1am, when I was trying my best to fall asleep. The beast took the form of high school. "Where would I send Connor to high school?" sent my mind racing furiously in circles. Never mind that Connor is in the second grade and I have a few years before that decision needs to be made. The beast had taken over and sleep eluded me for some time that night. It took quite an effort to stop that beast.


I woke up shortly after to the dog throwing up all over the house. Later that day I received a text from my husband that Connor had pulled the fire alarm at school. Of course, everyone at the school thought it was a real fire, and the fire department responded accordingly. Connor's teacher asked if the Chief would speak to Connor about the importance of NOT pulling the fire alarm. As the Chief was kindly trying to explain this to Connor, Connor was more interested in his red pen!


I have sent information to both our local police and fire departments about the free autism training for first responders each year at the Autism One Conference. Children and adults with autism may act differently than the neurotypical person, and confusion in the past has brought tragic consequences for people on the spectrum. I just assumed it would be a LONG time before Connor's first interaction with someone addressed as Chief!


See, the point is, had I known the night before when the worry beast invaded my mind that I SHOULD worry about false fire alarms instead of high school choices, I could have had a conversation with Connor in the morning. I would have told him NOT to touch a fire alarm even though it is fire prevention week and the alarm does have PULL written clearly on it! And I could have gotten more sleep too. The dog probably would still have thrown up though.

Back to School!

One more week and the kids start a new school year. We spent part of the morning putting name labels on pencils and notebooks. There is something exciting about new school supplies. They beckon with the promise of new possibilities and unwritten futures.

At the end of each school year when we are reviewing Connor's progress, I am always amazed at his growth. I am trying to remember that now, as I feel the jitters deep in my belly as the first day approaches. It's not that I am nervous about Connor's teacher, aide, or school - they are all fantastic! I'm more concerned that he is another year older, a seven year old going into second grade - the world around us expects more from our kids with each year.

I can't help but wonder how he will do in school this year. I want concrete answers, but I know that is impossible. It's hard for even me, who knows him better than anyone on this planet, to know what he will do the next moment - so I know the impossibility of predicting the upcoming year.

I am trying to relax and enjoy the promise of new possibilities and unwritten futures. But, dang, it is hard.

Strength, denial and me

We ALL feel it, special needs children or not: the stress from work or loss of work, the lack of enough cash flow to cover the bills, the medical problems, the demands of family life, the economy, the gas pump and on and on . . . And each of us has our own way of dealing with stress. Some people will exercise religiously (which I will start doing tomorrow, I promise!), some people find comfort in friends and some, unfortunately, find relief in ways that are damaging to their bodies and their families.

I realized yesterday, that for me, I was living in the land of denial. I was just plain out denying that I was stressed. Spouse unemployed? no problem. No cash flow? oh, that's okay. Medical issues? I'll just keep pretending I am not in pain rather than have the surgery, because who has time for surgery when I am trying to earn as much cash as possible? Marriage falling apart? I am strong, I can handle this. I put my head down and charged like a mad bull into life. Throw a load of laundry in, get to work, run to appointments, figure out ways to help the kids with their medications/sensory problems/summer fun/friends/therapy/behaviors/obsessions, get everyone cleaned up and into bed, complete any work and off to bed myself, exhausted.

Then my sister called with the "we're worried because we haven't heard back from you" call. Which was true! My friends and family who I used to have time to talk to had been neglected in my rush. I just couldn't fit one more thing in my day. And as I talked to her on the phone I choked back the tears that suddenly flowed, I didn't want her to worry more about me. But as she gently asked me questions, I realized that here was someone who was genuinely worried about ME, that I was important and actually loved. 

And with sudden clarity I saw my life as I had carefully constructed it: a shabby cardboard box surrounded me, inside I scurried through each day, without stopping to think or feel - because I was afraid if I did stop, even for a moment, to really feel my emotions, I would break into a million shards and that strong woman who could care for her special needs children would die. 

As I listened to my sister's kind voice, I felt the shabby box start to break apart. Quickly I tried to put it back together, but a shaft of light had shone in the land of denial, and the box couldn't be repaired. Emotions started to leak out, and some landed on this page. 

Time flies

Time certainly flies, in many ways. Hard to believe it has been five months since I have sat down to write. I missed it greatly, but since my husband was laid off and I moved to working full time, some things in my life had to give - like my sanity for one.

Anyway, I have been thinking about time a lot lately as we approach the 5 year anniversary of Connor's diagnosis of Autism. Part of me feels amazed that 5 years have passed so quickly and part of me feels "it has only been five years?".

When we took our first steps on this new journey into autism, I was shell-shocked, scared to death, lost, heart-broken, guilty and angry. I had no idea what to expect, where to turn, how to help my son and how I would make it to the end of each day. But here I am, 5 years later, and the view from here is grand. Yes, I said grand. I know - I can't believe it either!

Somehow in the last few months, peace and acceptance found me. Usually summer is a hard time for me as I see all the "typical" children Connor's age doing all the "typical" activities that Connor has yet to master. But instead of feeling a sense of overwhelming sadness, I feel contentment, pride and joy. I see Connor as he is: funny, happy, smart, curious, talkative!, loving and a beautiful human being. I am okay with his "quirks" in public. Previously I would try to minimize his hand flaps or humming because I worried about what others would think of him. Now I think, tough if someone stares, that's their issue not mine.

I love my new state of mind and I am SURE that Connor can sense it too, don't you think? Our thoughts definitely affect our actions, even if we don't want them to. I wish for you today a breath of peace and contentment in your life, it truly is an amazing way to live.

I just can't take this anymore!

This is one of those days. It started out fine and really nothing terrible happened. Just one of those calls from school about my child melting down. And then it hit and left me with tears welling and breath catching. And the thought that went through my head was that I JUST CAN'T TAKE THIS ANYMORE! Why, I wondered, were the tears coming over something that happens so often? I think it is because it is so constant. And even with all of the interventions we have put in place currently and over the years it STILL happens. The calls STILL come. My child STILL has difficulty and stress. And I STILL have to find a way to help. 

But truth be told, I am tired of fighting autism and aspergers. I want them to go away. Hey, Autism, let me ask a few questions: Can't I just have a day off? Why don't you go bother some evil person and leave the innocent kids alone? And, if I could ever get my hands around your neck Autism, it would not be pretty. Alas, autism doesn't respond to my crazy questions. Autism is not alive, it just is what it is. And I am what I am, an imperfect mother living in an imperfect world. And sometimes this imperfect world stinks big time.

Standing on the precipice: to medicate or not

I feel like I have been standing on the precipice for a while now. Looking down that steep cliff that seems to drop off into darkness. Down in the darkness is what may happen when I put my child on medication. Will there be bad side effects? Will it help him? What about his developing brain? Should I withhold something that may help him feel better or more comfortable in his own body? Will someone please shine a light into the darkness for me?

I guess that is what the doctor did for us, she shined a light into the scary darkness that shrouds medicating a child. I felt comfortable enough to give it a try. He has been on a low dose for a few weeks now, and there doesn't seem to be any negative side effects - yet. His eye contact has improved, it seems much longer and more intense. He also is responding to questions much more quickly. And these are good things. 

Now that we have jumped into the precipice with both feet, it isn't as dark as I had thought. Still scary, but not bad. I guess we will make it after all.

Ahhh, time for the New Year's Resolutions

Over the years I had grown to hate the habit of the New Year's resolution.  Mostly because I failed miserably in carrying out the resolutions.  So one year I made a resolution to make no resolution(s).  I loved that resolution!  And I stuck to it without a problem.  

I did make a resolution for 2005 that I also liked, it was to start drinking again.  (I had quit drinking several years before that, mostly because I am an all-or-nothing type of girl and moderation is not in my genetic make-up.) Connor had been diagnosed with autism in August of 2004, and I felt like a really needed a drink. Today I have a drink or two on special occasions and have found that I can be moderate about at least one thing.

I did make resolutions the years following, but let's just say my butt is STILL as large as some small towns. So I am sitting here on the eve of 2009, wondering about resolutions again. My stomach is in a knot. I feel compelled to promise myself so many things. Then I feel depressed knowing that I probably can't/won't follow through with whatever grand idea pops into my head. Time, demands, special needs all seem to conspire against my idealism.

As I write it dawns on me that the answer to my question is in the words I have written: failure, lack, big butt, knot, depressed, can't, won't, conspire. And there it is, clear as day, my resolution: cut myself some slack. Life isn't perfect, and neither am I. And this is going to be the year that I learn to accept myself as good enough. 

I wish you and yours a blessed 2009. 

  

Guilt, guilt, guilt

A parent of a child with special needs looks guilt in the face many times a day.  I should know, I have felt guilty at least 3 times today, and it is just mid-afternoon. Guilty that I was so irritated with my son who was up at 4:00 this morning, guilty that I was embarrassed about Connor's outbursts during the movie, and guilty that I was anything but patient when he messed with my printer for the millionth time.  

I go to bed some nights and remorse washes over me as I think about the events of the day. I think of all the "teachable" moments I missed, the times I should have whispered instead of yelled, and the fear that my children see me as a shrew instead of a loving mother. Guilt is my constant companion.

I wish I could be that perfect mother. I know, I know. The perfect mother is a myth. The perfect mother does not exist. Great, now I feel guilty that I want to be something that I am not. Ugh. Doesn't end, does it?

The pressure to be "thankful" on Thanksgiving

Normally, I do try to see the silver lining in most situations.  You know, when you say "At least it's not _____", fill in the blank.    I know I am supposed to be thankful that my children are healthy, that both my husband and I are working, we have our home, our family, and our wonderful neighbors.  And I AM thankful for those things.  But on this Thanksgiving day, the pressure to be thankful is killing me.

I don't feel like being thankful.  I am pissed.  Ticked off.  You name it.  I am tired of living with special needs. I want a break. I want someone to take this weight off my shoulders. Please. And what kills me is the knowledge that no one can take this weight. It is mine alone to carry. Forever.  

So this is my kiss off to the pressure of how I "should" feel.  And the acceptance of how I do feel. If you see me and my scowl today, don't even THINK about asking me what I am thankful for.  Ask me that tomorrow, when I am sure I will be feeling better and have a list a mile long.

My boy and his "posse"

I have always hoped for friends for Connor.  Just like all parents hope their children will find friendship.  But unlike other parents, I always feared it would never happen.  Or if it did happen, it would be setup by me - a kind of "fake" friendship.  And then, miracles of all miracles, I witnessed my boy and his "posse".  

Last night we went to Frankie's 4th grade music show.  We got settled on the bleachers when an adorable 1st grade girl came excitedly over to Connor and sat with him.  He was happy to see her!  Then an awesome 2nd grade boy said hi to Connor and sat with him too.  And then, a darling girl from his class came over and sat with the group.  She giggled at what Connor said.  I WAS IN HEAVEN!!  Can you tell how excited I was?  

Jim and I relaxed and enjoyed the music program.  Frankie wasn't nervous and you could tell she was having fun singing.  Connor and his friends enjoyed the music too. Jim and I basked in the glow of what we once thought was impossible - Connor connecting with other kids, and kids wanting to connect with Connor.  What a gift that hour was for me.  I guess I need to raise my expectations of what Connor CAN do, and not get mired down in what I think he can't do.  He certainly showed me last night, didn't he?

Are We All Actors?

Do you ever feel that almost everyone has their life together except you?  Yeah, me too. A friend and I were discussing the nitty gritty of our lives, lots of stuff that the casual acquaintance does not know.  And we realized that EVERYONE has their own nitty gritty, we just don't know about it.  

This got me thinking . . . Why do we put on the game face that we are together, competent, educated, problem-free people?  When you hear the nitty gritty of someone's life, you realize that they are an awesome actor!  You never knew what stinking rotten stuff had happened in their life because they never let on to their sufferings.  

Often someone will comment that I have my life together.  My response is always: me? no way!  I'm lucky I am wearing my own underwear today.  Yes, my own underwear. During grad school I was so crazy busy that I made sure everyone else had clean underwear, but I never got around to mine.  So I just wore Jim's.  One evening I said, "I am wearing your underwear", you should have seen the look I got!  I reminded him the rule was to wear clean underwear in case you got into an accident - the rule does not state who's underwear it had to be.  I guess that is a loophole, lucky for me.  

See, here is my point.  Would anyone have guessed that I was wearing my husband's underwear (on more than one occasion)?  No.  Because we are all actors in this play of life.  Pretending that everything is hunky-dory and smiling our way through junk we are stepping in.  So I think tomorrow, as long as I am this accomplished actor, I am going to act fancy:  drink with my pinky in the air, say "dahling" and wear my sunglasses inside.  Maybe I will try to stuff my dog in my purse, or maybe not.  

Will we ever get a break?

I am sure most parents feel that they will never get a break from the unending demands of parenthood.  I believe parents of special needs kids feel this more acutely.  For example, by the time a child is 6 years old, most parents can breathe a little more freely as their child is a little more independent and does not need to be watched like a  hawk. Alas, not for us.  

Autism does not give parents a break, ever.  Six years old does not mean that we can relax, even a tiny bit.  You must be on hyper-alert at all times.  This is downright exhausting.  I was talking with a mom the other day.  She said her 3 year old daughter loves to keep her infant busy.  Huh? Whoa.  A 3 year old keeping a baby busy?  She can trust her 3 year old in the presence of an infant?  Wait. A. Minute. Here.  

And then I feel ashamed.  Because I am jealous.  Incredibly jealous.  I may even be a little angry.  Okay a lot angry.  At these times I HATE autism.  I imagine autism as this freaky monster and then I see me all decked out in leather gear with huge, blazing guns.  The rest of this story is rate R, for violence.  Lots of violence. Then I realize the futility of this fantasy and the negative impact on my psyche. Afterall, negative thoughts breed bad karma, and we don't need any more of that here!

So when you are out and about and see a mother with a crazed look in her eye, and her child flipping out.  Stop and think of me.  Trade places with her in line.  Smile at her.  And please, most important of all, do not judge her.  As the saying goes, "there but for the grace of God go I" . . . 

Sleep is against my religion.

I am sure there are many mothers of children with autism who can relate to sleepless nights. I have this feeling that these night owl children belong to a secret religion that strictly forbids sleep. It also mandates that they try to upset the sleep of their parents as much as possible. Is this my sleep-deprived imagination running wild? Hmmm. Don't think so. I will keep you updated as I try to find proof of this clandestine sect. Until then, sleep if you can, but keep one eye open.

Boys and cars

Is this a sexist statement? "Males are fascinated with cars." It sounds sexist, but doesn't it seem to be true? In our house, it is all-cars-all-the-time. Connor wakes up in the morning with a string of car names and it continues until he falls asleep. His knowledge is so amazing. But I just don't get the fascination. Most of the cool gals I know don't get it either. For now, I guess it will be just another one of life's mysteries.

Back to School Blessings

Wonder of all wonders, school has returned for its annual salvation of mothers throughout the world. Like clockwork, children begrudgingly go to school, while their mothers try to find where they lost their brain last June.

Kids and moms need their routines. Moms of kids with special needs are especially grateful for a few minutes of respite from their constant duties. Let me compare these duties to a job: it is like going to work and then never going home. No time off. Countless nights kept awake by the boss who doesn't sleep. Pay? not in this home's budget. Lunch break? the boss is very picky and likes to whine and complain. Bathroom break? yes, but not alone, the boss likes to join you. Sounds enticing, doesn't it? That is why mothers are SO happy when school starts again.

So here is my toast to all the wonderful teachers who are giving the mothers a break. And here is a toast to all of the wonderful mothers who work so hard to make their kids' lives the best they can be. Won't you raise your glass of grape juice and toast with me?