Eat Chocolate Cake

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The school called today

Andre didn’t turn in his homework

He said he burned his book

I don’t think so but…

I eat chocolate cake while I contemplate the situation.

The other school called about Paul

The teacher tells me there is a group issue

Paul is missing assignments

I will check and let you know….but first

I eat chocolate cake before digging around in his room

I go to the school to discuss the situation

I let all involved know

That Andre will be staying after school in the tutoring room

Everyday until all the assignments are done

He clings and claws at me

He baby talks and pouts

I escape and walk around campus

And eat that emergency piece…

Of chocolate cake

That I tucked in my purse

Really this is getting too much to manage

Maybe I should turn to booze

And give up the chocolate cake

We get home

Paul is upset because I insist that he does his chore

That he did not do before he went to school

Man, that chocolate cake looks good…tastes better than it looks

Two boys with autism

One deep dark chocolate cake

Almost gone…

Autism makes you fat!

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On Giving Love When You Have None Left To Give

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Sometimes my house is pure 100% chaos. Sometimes it is as quiet as a lamb. Most of the time it is somewhere in between. But then there THOSE TIMES; the times when Andre digs in and NOTHING I can do will change the trajectory that we are about to embark on.

Change for Andre is difficult. It often is for those on the autistic spectrum. Sometimes that change is as small as using grape jelly as opposed to strawberry on Andre’s PB&J. But more often it is something along the lines of telling him to do his chore.

“Andre you need to empty the dishwasher!” (for the third time)

“I dun’t want to”

“There are lots of things I don’t want to do either but they must be done so empty the dishwasher. NOW”

“I dun’t want to”

This I dun’t want to would go on 100 times if I permitted it. Usually at this point the conversation will escalate to one more warning. Then I head upstairs (with him trying to stop me…pulling on me or poking at me) and take all of his electronics and tell him that he can have them back when his chore is done.  This is followed by ten minutes of attempted manipulation, threats (I’ll put your phone in the sink if you don’t give me back  my stuff) and flat out increased defiance. Finally, Andre will realize that he has gone too far and then resorts to such things as:

“Tell me you love me mom”

“I need love. Give me a hug NOW.”

I want a kiss NOW”

Along with all the demands he begins hanging all over me DEMANDING a hug or a kiss by clawing at me.

Of course, by this time I am worn out and tired of the CRAP. I try to remember where this is coming from inside his head (fear of abandonment/fear of being unlovable/anxiety) and react accordingly. But there are times when giving him what he needs (a hug) feels so ugly and disingenuous after all the chaos and manipulation that I find it hard to wrap my arms around him. I find it hard to find a place in my heart to grant him the grace that he needs. Most of the time I manage to dig it up from G** knows where but there are times it is almost impossible to find and it is at those moments when I feel like I have been swallowed whole, the best parts of me ripped out and flung far and wide. It is at these times when I start crucifying myself for not being able to give my son what he needs because it is such a little thing that feels so big.

Luckily, most of the time I do not get to this place of self torture because as I start to fall down the rabbit hole; I get ensnarled in the tree roots and find a foot hold to make my way up again. But there are times that I would like to keep falling down that rabbit hole just to feel the impact upon landing. To feel the brokenness that results. And when that happens it makes me realize that is probably what Andre is feeling (the impact) and then I find I can go over and give him that hug. A hug that will ultimately mend us both. A hug that that tells him that I love him and he loves me and that we are in this thing called autism together. Forever.

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Departing Wisdom

Running-Late

Recently I saw a sign which read: WHEN ANGER ENTERS, WISDOM DEPARTS. These words touched my heart as well as the profound which rests in my soul. I felt as I read this simple truth that the words were meant for me alone and that they were there because I needed that gentle reminder.

This summer has been hectic what with sports practice five days a week, my volunteer work and with my chauffeuring  kids to college and high school summer school. The reason for my increasing anxiety over the summer is a very tight schedule in which pick up and delivery had to be perfectly timed. Frankly, I don’t do being late well. For whatever reason since I was a little kid it was hardwired into my brain that you are not late. EVER. And I have lived by that rule my entire life. Except once. That was the time I was 5 minutes late and it haunted me for days.

“If you are late it shows a complete disregard for others and that you think that your time is more important than theirs. Your time is no more or less important than any one else’s. Don’t forget that!” admonished my father throughout my growing up years.

And so I have a heightened sense of anxiety if I have the slightest inkling that I (or anyone I am responsible for) will be late.

The lengths to which I go to ensure that I am never late come with a price…my sanity. I am three hours early before taking an airline flight. I am 30 minutes early for my Gracie’s orchestra performance. I am early enough to get my choice of premium parking spaces and my favorite pew at church. I get the best seats at the movie theater and I am always the person who is waiting for their friend to show up for coffee. Anyone who knows me knows that if I am 10 minutes late that means I am probably stone-cold dead.

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And so with back-to-back obligations this summer it is hardly surprising that I found it difficult to just stay calm. Unfortunately, as my anxiety rose it often turned to anger. This is not to say that I yelled…I didn’t…but irritation crept into my voice way too often and words came out of my mouth that that are not meant to be heard by a child. Thoughts of shooting the bird to that 85 year old woman driving at a speed of 10 miles per hour entered my mind on way too many occasions. And as my anxiety/anger increased I became distracted and I once almost mowed down a kid on a bike doing stupid tricks in the street to impress his buddies.

As I reviewed my actions during these dog days of summer  it became apparent to me that in those moments of high anxiety and anger; my wisdom did indeed depart because:

I said thoughtless things.

I thought evil thoughts.

I showed my children a side of me that they do not want to see.

And I disregarded my own health by letting stress take minutes off my life multiple times a week.

So in an attempt to increase my sanity I made a change. I now have the saying WHEN ANGER ENTERS, WISDOM DEPARTS taped to my dashboard. I find it comforting. And now as I drive along and the tension starts mounting, I just look down to give myself a gentle and loving reminder that wisdom in all aspects of my life are important if I am to become all that I am meant to be.

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Happy Birthday

Yesterday Andre turned 15. It hasn’t been the easiest journey getting him there.

Autism sucks. The endless meltdowns, constant push backs and never-ending trips to the schools. Countless hours of driving back and forth for therapy: hippo, occupational, psychotherapy just to name a few. The still unresolved issues of cleaning up after himself and throwing wrappers wherever they land. And the inability to consider other people’s interests and emotional needs instead of his constant “ME, ME, ME” thinking can leave me discouraged and exhausted.

Putting Andre on numerous drugs to control tics, anxiety, and severe ADHD wasn’t on my radar. I hate using these medications the combination of which can cause side effects that go bump in the night. And the cost, even with insurance, is astronomical. But managing him is easier with them than without and he doesn’t like how he feels naked and exposed when he forgets to take his meds.

Having two boys with autism has put our marriage under stress and considering divorceimages-5. Disagreements over how to approach IEPs, how to get Andre to comply, where we should be putting out money in our never ending quest to get the boys the skills they need to navigate life. Being totally exhausted hasn’t done wonders for our time together, especially in the bedroom.

I have been at my best and at my absolute worst because of autism. I have fought harder than I ever imagined I could trying to get services. I have loved fiercer than I ever thought I knew how. I did mundane tasks repeatedly in hopes that Andre would “get it.” I have also yelled louder, gotten angrier than I ever thought I was capable, and said a few words I desperately wish I could take back. Autism has at times brought out the Jekyll and Hyde in me and taught me things about myself I desperately wish I did not know. And PTSD-like symptoms still linger when I hear prolonged screaming.

But to his credit. Andre works harder than any one I know just to survive in the world. He fights anxiety, he has severe insomnia, bright lights bother him while loud noises used to do him in. Socially, he lives in a very isolated place. He wants friends but doesn’t know how to act so that people want to spend blocks of time with him.He is very close to beginning work on his Eagle Scout, he has saved the life of a elderly woman, and he carries amazing grades in school. He loves band, once memorized a 200 page book word for word, and he can name every dinosaur known to man including where they lived and during what period.

Recently, I asked Andre if he could take a pill so he would no longer have autism if he would do it. He replied, “No, because this is who I am and I like me.”

And even though this autism journey with Andre and Paul is not the one I signed up for (think European Cruise vs Survivor in the Outback); I also know that my boys are becoming young men who are an asset to the community and our family. They will make their way in life. It may not be the life I envisioned but both boys can and will make a life that they are happy with and can be proud of.

Yes, autism sucks but for some kids with this disorder there is a light at the end of the rainbow and in this past year its brightness has intensified and let us see the light where darkness once roamed. Autism sucks but it does not rule us.

Happy Birthday, Andre. You are deeply and dearly loved. I hope others will learn to accept and love you too.