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?

The day I was a "normal" mom for 10 minutes!

Last week Frankie got her cast off. To celebrate we went to the Polar Bear for ice cream. We sat at a picnic table next to the road to enjoy the beautiful summer day. And then, I experienced being a "normal" mom for 10 minutes! What is a "normal" mom experience? I was able to sit and enjoy sitting and eating ice cream with both of my children. That is it. Just being able to sit and enjoy for 10 whole minutes was an experience worth writing about!

Normally, Connor would be dashing to the street or around the parking lot to look at cars. He would not wait while Frankie finished. I would have my hand tightly around his forearm and holding him onto the bench. But none of that happened! He happily ate his ice cream and waited while Frankie finished hers. Wonder of all wonders.

Whoever said happiness is in the small things was right!

The Grieving Process

When Connor was first diagnosed, several people suggested that I would be going through a grieving process. I didn't get it. Why was I going to grieve? My son was alive and he wasn't suffering from a terrible illness. I just put my nose to the grindstone and got to work finding how to best help him.

I didn't cry when he got diagnosed, or even after some time went by. In fact, I didn't cry until just last year, when Connor was five years old. I was at a Burger King play place with a friend who also has a son with autism. Connor was running back and forth doing his usual thing: making noises, not paying attention to where he is running, and being in his own little, albeit happy, world. He frightened a younger girl and her "bigger" brother was getting into Connor's face to protect her. Connor didn't care, he didn't even notice. The father noticed, the other patrons noticed, and I noticed. I tried to explain it in a few simple words to the little boy and his father. I took Connor by the hand, left, and cried my eyes out all the way home.

I haven't cried since. Some tears may come to my eyes, but I push them back. I am afraid of what will happen if I actually let them go - I've just got to keep holding it together the best I can. If you know me well, you know that I am a bit of a control freak, and crying is losing control to me.

But I did learn the power of grief that day. It is mourning the loss of playing as the other children do at the dreaded fast-food-play-places of the world. It is the mourning of friends calling for play dates. It is the stab in the heart when other children and their parents look at your child and then you with "that look". It is realizing that you don't do so many things just because it is too hard. It is mourning the loss of what your child could be able to do without autism making it harder. It is your heart breaking when their brother or sister struggle with their part in the family. And you grieve every single day.

I guess you could say I was in denial about the grieving process. And I know, denial ain't just a river. But that will be a thought for another day . . .

Connecting

Today I was thinking about my need to connect with my family, friends and the world. I started thinking about this after reading the heart-touching comments my cousin Kathy left the other day. It is attached to the Summer Pain posting. Give it a read, I am sure it will touch you too.

I think that parents of children with special needs acutely feel the need to connect with other parents in the same situation. Parenting a special needs child can be isolating, demanding and just plain stressful. It helps to know that you are not alone. That you are not the only parent out there living a life that you never planned for.

So thank you Kathy for touching my heart with your words. And thank you to everyone reading these words for taking the time to hear me.

There is only one today

I try to remember that there is only one today. Sometimes it is hard to know exactly what to do to make the best of my one today. I keep worrying about tomorrow. Or thinking tomorrow will be better because I will have my act together, I will have more time, or somehow magically everything will fall into place. But isn't that a total waste of my one today? Guess it is time to get off the computer, grab the kids and head out somewhere beautiful in nature. See you. And, remember, you too only have one today.

Summer Pain

We wait all year for summer - no coats, hats, mittens and zippers to add ten minutes to our morning routine. We can go to the park and zoo whenever we choose. You see kids everywhere you go. And that, my friend, is the painful part of summer.

We just spent a week at the beach with wonderful weather. Families were all around us enjoying the water and sand. I watched the toddlers and preschoolers do things my six year old still cannot accomplish. (However, we were thrilled this year, as this was the first year he didn't eat any sand!) I watched parents sit on their blankets with a watchful eye on their small children, while I had to stand right next to Connor in what I call "hyper-vigilant mode". You just never know what he will do and you can't be more than a few steps from him, especially near the shore of Lake Michigan.

I try, I mean I really try to not let this get me down. We are so blessed for all he can do. Who am I to complain when other families have it so much harder? It is just sometimes, to put it politely, I want to kick autism right in the backside, hard.

About my brother

Even though my brother has autism, I still love him. He teaches me things about cars, but I never remember. I try to teach him new things too. I wish he didn't have autism.

Frankie (9 years old)

Here we go . . .

Thank you to Chris Barry, my brother-in-law, for encouraging me to give blogging a whirl.

Since my son was diagnosed four years ago, our life has not been the same. And, I guess, it never will be the one I imagined. That doesn't mean it is a bad life, just different. Very different, exhausting, isolating AND inspiring, encouraging and life changing. Who knew? Not us.