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.