On the autism roller coaster, I’ve hit a deep low. Last night Bruno and I had a painful talk about the reality of our situation. The reality of what, exactly, we are living with. And what we are living without. It was heartwrenching. So painful that at moments I wanted to scream for him to stop talking, that I couldn’t bare to hear any more about our lives. I couldn’t take one more second of staring at the harsh landscape of our family.
The fireman is a very trying little boy. Over the past few months he’s slipped into this alternate universe where he talks without regard for those around him. It came on slowly so we didn’t realize the path that we were on until we hit a cul-de-sac and he blocked our escape route out. He peppers us with questions, with repetetive statements. He has no regard what-so-ever for those around him. He speaks when the whim hits him and demands that all around him must stop what they are doing and focus soley on him. It is maddening. There is no way to intervene. We are steamrolled and nothing prevents him from forcing over us with his words.
I’ve tried patience. When patience ran out, I’ve tried walking away. And other times, well other times, I’ve yelled.
On Saturday, we were driving to the store and I was talking and the fireman was insisting on speaking and I screamed at the top of my lungs, “Stop! Stop! Stop!” Everyone was quiet until the fireman finally said, “I’m mad because one of you yelled but I don’t know who.” We were so stunned that he didn’t know who yelled that we didn’t know what to do. Calmly, I asked him if he knew that it was me and he said no. Then he went right back into his verbal marathon. As if nothing had happened. I hated myself for yelling, knowing that he couldn’t help it. I had yelled at my baby for something that he is unable to control. But I felt completely out of control. And I couldn’t take it anymore.
I can’t take it anymore.
Last night, after Bruno and I finally stopped talking, we went into the fireman’s bedroom for his regular midnight kiss. It is our favorite time with him, sadly, because he is asleep and sweet. And not talking at us or angry with us. He’s just our wonderful, wonderful baby.
When I leaned over to stroke his forehead, I began to cry. Tears slid down my face as I thought of this poor innocent child, who never once asked for any of this. Yet here we are, a family broken because autism is ripping us apart. And we are angry about it. And we like our child more when he is sleeping than when he is awake. The realization that so much anger and frustration comes from us and is surrounding our little guy broke my heart into a million pieces, and the tears that started off as a trickle began pouring like a summer rain storm- hot, volatile, explosive energy. I tried desperately to silence my crying so that I wouldn’t wake the fireman. As if he needed yet one more thing to make his life any worse- a crying mother hanging over him in his sleep. Bruno quietly took my arm and led me to bed. A place where I can cry without disturbing our baby.
When I awoke this morning, it was with heavy eyelids and I walked through the day focusing on keeping the tears in. Someone asked me how my weekend was and a tear sprang out before I could stop it. ”Not great,” I said. But nothing more. How do you even begin to explain? And why would you? When people ask how your weekend was, they really only want the highlights. Not the lowlights.
Today is World Autism Awareness Day. I would give anything to be a little less aware.
3 comments
eileen says:
Apr 3, 2012
I wish I had wisdom or comfort or something that could actually tangibly help. It is horrible to love someone so much and yet be torn apart by the caretaking aspects.
I came across this poem for something else. It has always been one of my favorites and maybe it will have something that nourishes you a little in this hard struggle. eileen
Kindness
by Naomi Shihab Nye
Before you know what kindness really is
you must lose things,
feel the future dissolve in a moment
like salt in a weakened broth.
What you held in your hand,
what you counted and carefully saved,
all this must go so you know
how desolate the landscape can be
between the regions of kindness.
How you ride and ride
thinking the bus will never stop,
the passengers eating maize and chicken
will stare out the window forever.
Before you learn the tender gravity of kindness,
you must travel where the Indian in a white poncho
lies dead by the side of the road.
You must see how this could be you,
how he too was someone
who journeyed through the night with plans
and the simple breath that kept him alive.
Before you know kindness as the deepest thing inside,
you must know sorrow as the other deepest thing.
You must wake up with sorrow.
You must speak to it till your voice
catches the thread of all sorrows
and you see the size of the cloth.
Then it is only kindness that makes sense anymore,
only kindness that ties your shoes
and sends you out into the day
to mail letters and purchase bread,
only kindness that raises its head
from the crowd of the world to say
it is I you have been looking for,
and then goes with you everywhere
like a shadow or a friend.
Cynthia Menard says:
Apr 3, 2012
Wow… my heart goes out to you. I discovered you through your ‘Mommy Gene’ post on Blogher (really excellent, by the way!), and in browsing around on your blog was amazed to find how much we have in common.
But your post from yesterday was heartbreaking. I have a brother with Asperger’s who wasn’t diagnosed until he was in his 30′s. Needless to say, our childhood was a strange and difficult one. He’s pretty high functioning, but not knowing why someone you love is so different from everyone else is puzzling at best, and more often frustrating, as I’m sure you know.
I wish I had some fabulous words of wisdom to share with you, but all I can say is that you sound like a terrific parent. I hope you find a bit more light in your world very soon and I’m looking forward to reading more of your writing.
Best,
Cynthia
Jordan says:
Apr 4, 2012
When I was young, I always thought my uncle was strange. Due to his severe Asperger’s, he was always arrogant and rude to my grandparents, talking nonstop or remaining silent for days. One day, he moved out (at age 22) and no one heard from him for 10 years. Later we found out it was caused by his dad telling him to be quiet, that he was interrupting a conversation.
One day I came home and my uncle was sitting on the couch in our living room. He had contacted his brother, my dad, and wanted to come back to the family. Being a young teenager at the time, I didn’t want anything to do with him. I didn’t know that he had Asperger’s. He spoke down to me and tried to immediately resume his place as my elder and uncle.
It took sitting down with his psychiatrist and my father for me to understand what Asperger’s was and how I could best handle conversations and interactions with my uncle.
It’s still not easy. Years later, with him being in his mid-40′s, I still get irrationally angry when he talks down to me or interrupts me to talk about something that he knows in detail. I know why he’s doing it and I understand he doesn’t mean to come across as rude. What I do know is that he does love me as family and I’m learning still to love him equally as my family (my grudge-holding habits are a struggle to deal with in this situation).
I guess my point is, it’s going to be tough every day. It’s always going to be a challenge. Just hold on to the knowledge that even though he might not say it or show it, he does love you and he knows you love him. It’s worth the struggles and the tears.
And hey, my mom reminds me all the time that as the first child and grandchild, I was the guinea pig kid. I was hell on wheels and my mom frequently felt hopeless, unappreciated and wanted to rip both her and my hair out. But we made it through the hard times.
I wish the best for you and your family. Hold your chin high and keep truckin’.