wakeup call – part two (loud and clear)

Ed Note: Please click here to read the first half of this post – Wakeup Call – Part One

*

We head down the stairs to start our morning. Katie is in the den, watching TV. Brooke’s not ready to interact with anything human so she heads straight for the office and settles into the comfort of the computer. I offer breakfast, but she makes it clear that she’s not ready for that either.

Katie, on the other hand, is only too happy to accept. I head to the kitchen and set about making her eggs.

I take out the pan and set it on the stove. I spark the flame as I drop the butter into the pan.  While it melts, I crack open the laptop. I check for responses to my query.

My God, we’ve GOT to get this kid some help. Someone, anyone who can tell him it’s OK. That HE’S OK. That it will get better. That he’s not alone. That somebody out there gets it – has lived it – has come through it.

Yes, that’s it. He’s got to know he’s not alone.

Resources are coming in. I cut and paste as I see them. But there’s one that I’m waiting for. The man who stepped forward and said, “I run a closed page for gay, autistic people.” It’s him I’m hoping to hear from. He’s the one that holds the key to community for this kid. 

The smoke alarm is loud and shrill – it’s rhythmic pulse screaming my transgression to the world.

“WAKE UP! WAKE UP! WAKE UP!”

I turn around in a daze.

The butter is long gone, having burned into a black residue on the bottom of the pan. Smoke is everywhere. The alarm is unbearably loud. Brooke is screaming.

I turn off the stove and sprint into the office. I scoop my terrified girl out of her chair and into my arms. I press her right ear into my shoulder and cover her left with my hand. It’s no use, really, but it’s all that I’ve got.

I scream to Katie over the alarm, “Baby, get Daddy; I’m taking Brooke outside.”

There’s no need – Luau is already halfway down the stairs.

Brooke and I run for the porch.

We’ve done this before.

Sadly, It ain’t our first rodeo.

“It’s OK” I tell her as we get outside. “It’s OK.”

Within a minute, Luau has the alarm turned off.

The siege is over.

“It’s all done, baby,” I tell her. “it’s all done.”

It’s too late.

“Do you want to stay out here for a few minutes?” I ask. She points to the steps.

We sit together on the steps.

She is still in my arms.

She is twitching – her body tensing and releasing involuntarily.

She is terrified.

January, 2012 …

It’s dinner time.

I try to coax her into the kitchen.

She takes a few steps, then bounces off an invisible wall.

Have you ever seen a firefighter repelled by overwhelming heat? It may be invisible; but it’s impenetrable.

She reels backward into the office.

I offer her my hand again. I promise to show her that the cooking is all done. That it’s OK to walk into the kitchen now. I tell her that we will look at the stove together before we walk all the way in.

“There’s nothing on the stove, baby,” I say. “I promise.”

She looks leery.

“No pan?” She asks.

“No pan,” I say again, “I promise. Let’s go look together. I’ll be right here with you.”

Her body is rigid. She’s not moving.

“No pots?” she asks.

“No pots,” I say.

“There won’t be any noises,” she says.

“No baby, no noises,” I promise. “Let’s go see.”

Together, we take a tiny step forward. I’m hopeful.

Then not.

She drops my hand and bolts in the other direction. She runs in a tight circle – into the hallway, around the corner, into the living room. and back through the office door. She is covering her ears with her hands. She’s no longer talking, but yelling.

“NO NOISES! THERE WON’T BE ANY NOISES!’

God damn it.

Academic challenges? Bring ‘em on, Bucko. Difficulty with diet? Self care? Social Pragmatics? Transitions? We’ll figure em out. Every one of them.

But this.

I can’t ‘fix’ this.

I can’t make it OK.

I want to scream with her.

That was January.

We’d made progress since then.

So, so much progress.

One of two goals we’ve focused on with the BCBA who’s been helping us at home.

Step by step, brick by brick, we’d made progress.

And in one fell swoop, I’ve just dismantled it.

In one careless moment, I’ve brought her screaming back to square one.

To her home as a war zone.

To the place that she lives as a place where her worst fear may be realized at any moment.

Where there is no safety.

With each little jerk, she emits an awful noise. It’s guttural, animalistic, violent.

She clings to me.

Luau comes to check on us. He doesn’t see us at first, so he calls out. I’m afraid to respond.

In these moments, me talking to someone else is enough to unravel the one thread we’ve got left. I stage whisper, “We’re over here.”

She whimpers.

He comes around the corner. “You guys, OK?”

My eyes fill with tears as I look up at him.

I did this.

I let someone else’s kid come before ours. 

I let the needs of the world outside our door make me forget about the very real needs of the one inside our home.

I did this.

All I can say is, “I’m sorry.”

He heads back into the house to clean up the mess I’ve left behind.

I rock my girl, trying desperately to stuff the demons back into their box.

I whisper in her ear, “I’m so sorry, baby. I’m  so, so sorry.”

I look up.

Yes, God.

I heard the alarm.

Got the wakeup call.

Loud and clear.

 

44 thoughts on “wakeup call – part two (loud and clear)

  1. Oh Jess, would hug you if I could. We have all done this. We who understand better than possibly anyone how much need there is for parents like us to support one another and protect all these kids – yet the demands on us to support just our own are so great.

    I have been here, I have done things like this. Every moment of my day is filled with thousands of choices and only one will support my autistic child. The funny thing is I can make any number of choices that are multipurpose: a family outing would support myself, my husband and my other child but ruin my eldest boy. Cooking dinner would nourish me and my husband, keep us healthy enough to keep up with these guys – but the cost of divided attention is the safety of my children.

    Choosing to support another friend with an autistic child, or an entire community, is and sadly must always be finely calculated. Can it be done after my eldest goes to sleep (finally)? will I have the brain cells left? are we even in a place where I have something positive or hopeful to say?

    this is the united condundrum autistic families face every day. we are so grateful for the precious time you spend sharing your heartfelt words every morning before most of the world wakes up. It is not in vain, nothing we do for others, no matter how small, how measured, is in vain.

    what comes to mind is the biblical story of the widow who threw in the two mites – all she had – into the tithing pot. she could barely afford that pittance – but Christ took note of her and said it meant something, that in the economy of heaven it had enormous value.

    thank you for blessing us with all you have.

    praying for dear Brooke that she will find her way back from fear, more quickly this time. that she will recover and grow stronger. that the next time and the next time and the next time will not be her undoing but her growth. strength and peace to you as you guide her.

  2. Yes sometimes God whipsers, sometimes he needs to shout. Now please let yourself off the hook. Please.
    Go C’s!!

  3. Been there… It can be very difficult to balance everyday life without the outside world throwing us a curve ball. Just know it does get better… She can overcome this and anything else thrust upon her. My boy has and still has a way to go but there is progress… With each “mistake” he has learned to adjust…still issues with the radio being on…still doesn’t like the dryer noise…but can now handle the vaccuum and now wants to play on the piano instead of covering his ears and running making a high pitched cry as he goes. It WILL get better…much love to you and yours. Debbie

  4. My head is swirling with so much to say…we know our kids’ triggers and what causes them pain, but how could you walk away from this boy?…you do so much for so many, I don’t know how your brain keeps it all straight…we all love what you do for all of us, and I’m glad you found a way to let us help each other now. Now you take off the hairshirt and take care of you. love you.

  5. We give ourselves an impossible task. We can’t anticipate every sound and smell, every moment that will throw our child’s world into a tizzy. You may be right that you need to step back from all you are trying to do for the whole world, but please give yourself a break. Autism did this, not you. That smoke alarm sound was practically a tradition during our summer sleepovers at my aunt’s house when I was a child. It was a family joke that when you heard that sound you knew breakfast was ready. Now I hear it and I wait for my son’s panic. I see a dark cloud and I know he will pace. I am on heightened alert all the time and it dawned on me when reading some of your columns that we begin living the same fears of our children because we are constantly trying to anticipate them and/or fix them. It is like living in a war zone, having to constantly be vigilant and every so often you need to drop your guard. You need to take a break. You need to give yourself a moment to just be. I have almost forgotten how to do that, now I have to work at it. Let this “wake up call” help you to give yourself some moments that are not planned and plotted.

  6. I’m sorry for all you and Brooke went through. If anything, this is solid evidence that we and our kids need NT families on our team – we have our own personal work to do, so it is such a gift when people who are not in the midst of raising an autistic child are willing to stand up for their best interests as well.

  7. i am so, so sorry brooke was hurt by your desperate attempt to help. she paid in fear and we all know the other child may have paid with his life if people like you didn’t care. the CHOICES are too F—– hard. we love you

  8. I.just.want.to.fix.it. For you, for Brooke. Orbitingplanetd said it so eloquently. I will simply add “ditto.” It is why I have stepped so far back, even from blogging, this past year; my child’s needs have to come first. I can’t “learn to speak French when the house is on fire.” Love you. xo

  9. My heart hurts for you after reading this…..it makes me think of a post that Stimey wrote
    “A friend and fellow mom really got to the heart of it though on Friday morning when a bunch of the kids were at the pool. Five or six of us parents were watching about 15 kids. We made sure they got along and we made sure they were safe and we were happy to do it.

    “Your baby is my baby here,” my friend said.

    Your baby is my baby.

    That’s it. That is the heart. The Cheetahs are the ultimate community. There is no judgment from other parents, no explanation is necessary. We get it. We all get it.”

    The heart of this online community is much the same….we so want give and seek that feeling of someone who gets it. Your exceptional gift for writing speaks to the heart of all mothers – especially to those of us walking on this path of autism. By sharing your diary you have already given us so much. I’m so sorry that this happened for Brooke and for you. Your baby is our baby and we all cheer for her progress and weep at her struggles…..

  10. (((hugs))) Hang in there! I know what you are saying! This balancing act is so difficult. We want to help those who are just beginning, who are in survival mode and waiting for answers or not getting the answers they were hoping to get. Thanks for this post and countless others. It really helps us to understand that we truly aren’t alone and that we’re all in this learning process together.

  11. I want so badly to fix this for you….I’m talking to my daughter’s team about this right now. She is deaf (in addition to her autism), so we have some access to the deaf community. We are thinking that there might be a silent fire alarm (stobe lights/ vibration) designed for the deaf? Many of the ones we are finding involve an excessively loud alarm, but there should be a silent one… I know my kids’ behaviorists out there might challenge me- learn coping skills, blah, blah, blah. But you are right- home is the one place where she should feel safe. I’ll let you know if we find something, or maybe someone else out there knows of one.
    You’ll never be able to eliminate all the triggers. You can’t blame yourself. I remember as a kid, one of us was always assigned to open and close the basement door under the smoke alarm to fan it while my dad cooked bacon- because it always went off! What can I say, Irish cook. 😉 She’ll be okay. We’ll find a way to make this okay.

  12. Oh, Jess, I know it hurts…but you can’t be so hard on yourself. Trying to reach out and help other’s is a noble call. You were not putting some one else’s family first….you were distracted. Wanting to help. It happens to ALL of us in one way or another. I know it breaks your heart that Brooke is terrified. I know it hurts to see your child like that and be helpless to do anything. But don’t think YOU caused her this pain. The last thing you are is uncaring, unloving, unconcerned for your own family. You have to forgive yourself to be able to move forward, and do the best you can for Brooke. You know what you have to do now, and you’re taking the steps needed. I know it hurts Jess, GOD do I know how it hurts. XOXO

  13. I get it, i get you..that is a moment that stops you cold. What to do next? Well you just take as much time as you want.

  14. I loved the comment where she mentions Stimey’s post about “your baby is my baby here”. That is so true. As I read this recount of your wake-up call, all I could picture is my son, covering his ears, trying to climb into me as he couldn’t cope with the shrill alarm. I ache for you. I cry for you. We are all here for you.

  15. Oh, Jess. My heart aches with understanding. I have two children on the spectrum. On the way to school, I asked the youngest if she would like to have me come join her for lunch (I had her IEP conference after lunch)…YES, of course! She was so excited. So, I went home to the oldest child, home sick. We spent the rare alone time working through some of her anxiety issues. Later, when I arrived for the IEP, I realized what I had done. I had forgotten lunch. And, I knew that I had just set off the “fire alarm.” My youngest cannot handle any changes in what she expects. She goes ballistic. As her teacher walked toward me, I could see the look on her face. Her expression said everything. Not only had I deeply hurt and frightened my child, I had probably messed up the teacher’s day as well. I was physically sick. Had I messed up this way with my NT child, he would have been disappointed, but not devastated. I desperately wanted a “DO OVER” button. Daily, I juggle to meet the needs of the two ASD’s girls, and try not to neglect the NT boy in the middle. Please, God, please, protect my children from my humanity. I am not perfect. I will never be perfect. And, God, please forgive me. And help me to forgive myself.

  16. ((HUGS))…and praying that you and your beautiful Brooke pull through this quickly. We have all made mistakes as parents, made the wrong choice at a critical point. It is not the mistakes that define us, it is our reaction to them that does. Share the load…we’re here to help!

  17. So sorry this happened. Sometimes the universe just seems to slap us around until we finally get it. I think I’ve lost the ability to recognize subtle signs as I’m too busy juggling all the day to day stuff.

  18. Being an autistic father of autistic kids, I can sympathize and I agree with some the previous post that I just want to fix this! I know that the point of this post was not asked for suggestions, but I do have one.

    For myself and my kids one of the tools we use is a pair of large headphones the completely cover the ears to help block out sound.I have really been wanting to try the Bose noise canceling headphones, but I haven’t been able to afford one yet. The idea of a tool that can block out disturbing sounds from outside and replace it with soothing music is one that really appeals to me.

    Anyway, being human means you’re going to make mistakes as a parent. You can only do your best for your child, and it sounds like you’re doing a pretty good job.

    John Mark McDonald

    • john, thank you so much for the suggestion. brooke used to wear headphones and then one day became intolerant of them. she has them for emergencies, but prefers not to use them anymore. we will continue to offer them as an option, knowing that often she circles back to things when she’s ready. thank you for the idea, and for the kind words as well. – j

  19. Brooke will be ok, you know why? She has a wonderful family or so I hear 😉 I think that is why you felt such urgency for the gay autistic guy, because he doesn’t have that kind of support system. It’s okay to take off that superhero cape, sometimes you really need to. Hugsssss.

  20. It’s ok!! You are allowed to be human, and all that comes with it!! I’m so sorry that your wake up call had to effect Brooke like that, but maybe it the kind of call you needed – one that does not just effect you but the one’s you love…. You need to hear it!!! and finally give yourself permission to be Mommy first. We with our children are lucky to have you here with your stories and your support – but you have to come first…. Your family needs to come first and all of us totally understand it – we live it, too!! Remember to put on your Oxygen Mask!!!!

  21. There’s really nothing else I can add that 28 people above me didn’t say. Sending love and support.

  22. Jess, you heard it. You’re making the changes. You’re accepting all of our help -which, mind you, is an honor. You starting the community help page and allowing everyone here to work together so you don’t have to take everything on on your own is, I am sure (because I am a lot like you in this respect it seems), a little scary due to the fact that you lose control over what is said there. Despite the fact that you know everything will be okay, letting go, just that little (HUGE) bit, it is still scary when you have put so much of your heart and soul into those of us here. Just know we will all do our best to make you proud, to help as you have helped so many – to help lighten that load that you so willingly have carried for so long.
    I am sorry that any of you had to hear that alarm, but I am so glad you did.

  23. God bless you and your family Jess! We say it, and then it’s so easy to forget when we get caught up in life. It’s time to put your oxygen mask again for you, and your family.

  24. Take heed of your own words… wake up then. And take a break. Stop with the advocacy for the world right now. For a little while. The war against autism will go on without you for a bit. And it will keep marching forward. Until you feel you can come back. Then you just need to step into the march. Just like jumping into that jump rope 2 girls are holding for you. The battle will go on without you. Others will get help for awhile without you. But, your family will not go on without you!!
    Take a break. Your family needs you!

  25. Thank you for your honesty…..your courage…..and helping us all hear our own “wakeup calls”. I can feel your pain, regret, and sadness in every word you wrote. Like the smell of the smoke and the screaching of the alarm….the anger that you felt toward yourself lingers on the page.
    Jess, you are a good mom…….no, you are a great, amazing, and gifted mom. You remind us that we all have regrets. And by sharing your regrets you show us the power of clearing the room of the smoke…….and not beating ourself up with the frying pan that started the fire.
    I thank you for so honestly sharing your journey and I am so sorry that this happened.

  26. So often I have wondered how you do it!! Thank you for all that you do. You have to take care of your baby first, just like all of us.

  27. all, i wish i could respond to each and every one of you and tell you how very much your love, support, advice and solidarity mean. i can’t. but please, please know – it’s everything. i am so grateful.

    • You’ll do it! You’ll succeed at this like you do everything! some days may be more difficult than others but it really seems like you will not be kept down every!! Just remember… everything is NOT your fault. You didn’t ruin anything with Brooke. Sh*t is going to happen. Unfortunately for our kids, it will happen and it won’t be routine but that’s life… and you are good at life!! Give yourself a pat on the back!

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s