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.