A Thankless Job

14088725_1417495344927588_794622903_nYesterday we had another weekly visit from Cooper’s crisis social worker. It was great as usual. We laughed and told stories and talked about ways to help Cooper. More specifically ways to make life easier. I mentioned how the week before the electricity was out at the house and I lasted 15 minutes before I threw him the truck to watch a movie. That kid cannot survive without technology. In a 15 minute period he melted completely down over no WI-FI, useless remotes, VCR’s, DVD players, TV’s, kindles, etc. It wasn’t a pretty picture.

So, as we were driving him around, I was quickly reminded that Cooper won’t eat out of a drive thru. Not only does he only eat a few foods, he can’t always manage to feed himself finder foods. Like biting a chicken nugget can be challenging for him. He needs it cut up. That’s the apraxia side. Biting with the front of your mouth can be tough. Also, he only drinks milk and apple juice…out of his cup…or a Capri Sun…once in a while.

So. New goal. Drinking juice out of a cup with a straw. Or a to-go cup. Or anything different than his preferred sippy cup. I am so sick of those damn sippy cups. Half of my paycheck goes to buying new ones. He chews right through them. It’s a sensory thing. The crisis worker said bribe the hell out of him to get hm to touch the straw to his lips. Start once a day. Don’t force it. Start small.

As our conversation evolved we moved onto talking about the crisis workers job and how he is a realist. His job can be hard. He sees things he can’t always talk about. He isn’t about providing hope….he’s here to provide support. And make life easier. Lord I love this guy.

He told us a story about an autistic teen who watched his dad get murdered. And how the teen boy could not process it. He couldn’t get the words out to talk about it. Can you imagine? I told this guy that I often wonder if Cooper would notice if I died. I think about it a lot. I know that sounds weird but it’s a really valid question. And a sad part of nonverbal autism.

Cooper has very basic needs. He needs food, milk in his cup, someone to wipe his butt, change his diaper, press play on the remote, enter in the 4 digit code on the IPad, drive him to and from school….that’s about it. Anyone can do these things. These aren’t necessarily mom things. Or dad things.

Yes, Cooper wants love when he’s sad. Hugs when he gets hurt. Clapping when he does something well. But, I truly don’t know if he needs them from me. I will spend hours at night wondering if he would notice if I never came back. Could he express it? Would he take my picture to people and point to my face wondering where I am?

I think the answer is no. And that really hurts my heart.

Being a special needs mom is a very thankless job. It’s different than parenting a typical child.

It’s really sad.

Anyhoo, I wanted to share a blog post that was on The Mighty today. It’s called, ‘To The Rock Star Mom of a Child on the Autism Spectrum‘ written by Teresa Cooper. Here is a link to her blog too. 

This blog really touched me. We question everything. We live off of caffeine. I once had a lady comment about my coffee drinking at 4 in the afternoon. Ha ha. We live in a world of exhaustion and failure with very few successes.

Dear mom of a child with autism,

I know you might be tired — tired from lack of sleep, worry and frequent meltdowns. You drink so much coffee, your blood is 80 percent caffeine. No one seems to understand your child or what you go through every day together. Almost daily it seems someone looks expectantly at you to gauge your reaction, as if to say “Surely you can do a better job,” because they think your child is throwing a tantrum over a toy.

You question yourself and your mothering abilities. If you work outside the home still, you may question working. Daycare systems sometimes lack the training to properly care for a child with autism. You deal with a lack of consistency in your child’s services at school. Some of your coworkers totally understand your situation, and others judge it, so you never know where you stand. You think that if you talk about all these feelings, people will think poorly of you, so tuck away the feelings and try to hide them from the outside world.

I know how you feel, because I feel it too.

Here’s the thing, though. You may feel exhausted, rattled and even useless sometimes, but you are a rock star. No one else knows how to calm your child down like you do. You are the master of the paperwork, the queen of IEPs and the expert negotiator. When it comes to advocating for your child, you work tirelessly to campaign for fair treatment and understanding. You take care of all the big stuff, but you also kiss the boo-boos, play with dinosaurs and dolls, and learn about your child’s favorite television shows and books.

You make a mean macaroni and cheese. You can get pre-tied shoes on your kids’ feet in record time. You find treasures in the dollar bin and can turn almost anything into a reward. You can spout out “first, then” statements like no one’s business and know the difference between a tantrum and a meltdown. If anyone asks, you can tell them where to find what exists in the community for children with autism.

Your children love you, and they know you love them. They know because, in all the ways that count, you show them.

Finally, remember your successes. Today you may not have found victory, but don’t feel defeated yet. Rejoice in all the victories, big and small, you have achieved with your child already. Remember that somewhere in the future, you will find more triumphs.

You’re a beautiful mother with a gorgeous, magnificent, dazzling child who simply sees the world differently than anyone else. From one mom of a child with autism to another, I encourage you to keep at it. You’ve got this.

 

 

 

 

I Stopped Talking To Cooper A Long Time Ago

1913706_1195315080479549_3993140810917113887_nYesterday Cooper’s Crisis Intervention Social Worker came over for our weekly visit. I have so much to write about that and will at some point. He has given me more valuable advice than any single person, blog, doctor, etc., throughout this journey. He has helped me and my family.

And in turn I want to share that with you peeps. But, per the usual, I am days behind at work and working from home in a disgusting house with dirty dishes, dog hair and a pile of laundry that would scare my mother. So, I am going to share one tidbit that I have been thinking about all night.

This man, David, who is probably in his 50’s, has helped thousands of autistic children and adults over his career. He comes into your home and observes and talks and collaborates and gives ideas. WHAT A NOVEL IDEA!!! He gets to know the child. And the family.

Yesterday we were commenting on how vocal Cooper is becoming. He has even developed a strong, loud ‘yeah’ and makes the ‘H’ sound when beverages are hot. So huge.

From the beginning, he has told me to stop worrying about Cooper talking. He said whatever I do…whatever therapy we do…isn’t going to change this outcome. He’s either going to talk or he isn’t so stop worrying.

He told me a story about a completely nonverbal autistic 8 year old girl that he had previously worked with. He said she was having a particularly hard meltdown so he brought her outside to the porch to calm down. He was sitting with her and talking with her. He told me he talks to nonverbal children in a completely normal and natural manner. He was talking about his day….how hard it had been…how he was tired…and how he was having pizza for dinner. And then he asked her….’do you like pizza?’

Without looking up she said, clear as day, ‘Yes, I like pizza.’

This girl was completely nonverbal.

He asked her what she liked on her pizza?

And she said ‘pepperoni.’

David told me he never lost his cool. He never acted surprised. He just talked with her. And at one point he looked back into the house from the porch and the little girls mother was sobbing.

What a story. Was she cured? No. Did she start talking regularly? No. But she spoke.

His advice to me was NEVER stop talking to Cooper. Talk to him normally. Ask him questions. Pretend that he talking back. Do it so much that it starts to become a habit.

After he left I tried to talk to Cooper and it felt weird. It did not seem natural. Then my mommy guilt kicked in. Do I ignore him? Do I acknowledge him at all? I couldn’t remember.

So my goal is to start talking to my son again because in my heart I know I stopped a long time ago. Part of me blames the technology device that he is always using. But that is no excuse.

Happy Friday ya’ll.

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I Begged God To Fix Him Too

I work for a website called Next Avenue. Today, they shared a story titled, “What Will Happen to Adult Children with Autism?”

Check out the article. It highlights a new film called Life, Animated that sheds light on the realities that families like ours face.

I sobbed at my desk like a little baby. When the doctor says…Let me tell you about autism. And some of the kids never talk again.

I feel that in my heart. I feel it in my stomach. When the mom says:

“I’m just going to hold you so tight and love you so much that whatever is going on will go away.”

I’ve felt that desperation. I begged God to fix him. I begged my mom to fix him. I begged Cooper to fix himself.

It’s hard for me to even watch the video. But do it. Watch it. It’s really quite wonderful.

Why Is Honesty Perceived As Negativity?

Hi all,

I wanted to share this post from a fellow autism parent and blogger. I read his posts often and rarely has something resonated so deeply with me.

Click to read Losing Hope Is Not A Bad Thing by Autism Daddy.

When people ask me if I think Cooper is going to talk one day I used to say….YES. And then slowly I switched to MAYBE. And lately I say a no. People usually look at me with a weird look or scold me or tell me to be positive. Or tell me to have faith in God or not to lose hope.

It’s funny though. I am the least negative person you will ever meet. Every single day I wake up and put my big girl autism fighting pants on just like all the other parents.

Why is my honesty perceived as negativity? It’s ok to be real people. Being honest is allowed.

I refuse to wrap Cooper’s autism up in a big red bow for people. It’s scary and sad and ugly a lot of the times. And that’s OK.

I would have lost my mind a long time ago if I was truly waiting for him to speak. I would be so sad thinking about all the words and moments I was missing. I wouldn’t be sane.

I am honest now. I am real. And I feel a lot more free. Instead of thinking about him speaking I think about communication devices. I think about nonverbal communication. I think about helping him find comfort and joy and peace.

Losing hope in Cooper speaking is the best thing that has happened to me in a long time. It freed me. 

Go read Autism Daddy’s post. It’s a good one.

 

Most Of All, I Teach You Giving

This. Always this.

I do not gift you with clever conversation, cute remarks to be laughed over and repeated. If you allow me, I will teach you what is really important in life. I gift you with my innocent trust, my dependency upon you.

I teach you giving.

Most of all, I teach you hope and faith.

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The Hitting Has Begun

13342959_1342236069120183_2382830390327838836_nI have been blogging about Cooper for a few years now. Since the beginning I’ve received more emails than I can count from autism parents who have teenagers. The emails always start the same way. They say they have a teenager who was just like Cooper. And they tell me about the diagnosis and the process and the where they are currently in the journey. And then they go onto tell me that their daughter or son started hitting and kicking and exhibiting really aggressive behaviors.

I’ve read enough of these emails to know how they end.

These parents had to make the heartbreaking decision about what to do once they behaviors got to be more than they could handle. Do they keep their child home and hire care? Do they quit their job? Do they home school? Or do they find a ‘home’ or facility that their child can go too.

These emails kill me.

I can’t imagine the weight of that decision. Just thinking about putting Cooper in a facility causes me to tear up. It makes me physically ill. But I told myself I wouldn’t have to worry about it. Cooper had zero aggression. He was sweet and loving. We were safe. I wouldn’t be faced with that decision ever.

Then two weeks ago Cooper started hitting me. Like, really hitting me. Mostly in the face. No matter what I asked him to do I would get a slap to the face or a kick to the stomach. And then it started happening at stores and in front of other people. That’s a game changer. People take notice of a kid hitting their parent. Or hitting their brother in a really aggressive way.

There is no hiding it. Unless of course we hide in our home. Which I try to avoid.

The hitting and kicking are impossible to deal with. I don’t know how to react. Disipline doesn’t work. Hugs don’t work. It’s almost like hitting is who he is now. SCARY.

Here is what I know:

1.) These behaviors happen when I remove him from his comfort zone…whether that be an actual place OR challenge him to do something he doesn’t want to do. For example he ALWAYS hits me at grocery stores. We will be standing in the checkout line and he will hit me in the face. It’s embarrassing and loud and it hurts. He hits me a lot at school drop off as well.

2.) He is rarely hitting to be mean. He is laughing and being silly. In his own way he is probably playing. You can even see the silliness in his face.

3.) Disciplining does nothing.Every time  I discipline for hitting it is like the first time. There is no recollection of ‘why’ he shouldn’t hit.

4.) He doesn’t know the difference between giving a loving touch and an aggressive touch. And that is sad. Really sad.

5.) I’m not going to be able to handle him much longer.

I put in a call to his social worker and told him what was happening. He told me about a group that will come into our home and give me ideas on how to combat the behaviors. Sigh. I really thought we could avoid this.

I never pictured a day when Cooper would be aggressive. It’s so new I am hoping it just goes away but…deep down…I know it’s not going too. This is most likely the next phase. Nonverbal kids…teens…people…get frustrated and MUST find a way to communicate. And often it comes out in the form of aggression.

Cooper Has The Kind Of Autism No One Talks About

I stumbled across a post today on Facebook titled, ‘My Son Has The Kind Of Autism No One Talks About-Term Life’.

“Because for every boy with autism who manages his high school basketball team, there are 20 boys with autism who smear feces. And for every girl with autism who gets to be on the homecoming court, there are 30 girls with autism who pull out their hair and bite their arms until they bleed. And for every boy with autism who gets to go the prom, there are 50 boys with autism who hit and kick and bite and hurt other people. This is the autism that no one talks about. This is the autism that no one wants to see.”

This is Cooper.

I have been fighting how severe his autism is for so long. I refused to say it out loud. We faked it. We hid it.

It’s been an internal battle that has kept me awake at night. Caused me to lose weight and gain weight. Caused me to drink way too much. Caused me to lose friends and family. I’ve pushed people away. I’ve made terrible mistakes and choices trying to escape the trapped feeling Cooper’s disabilities have caused me. I ran from it. I hid from it. I took it on headfirst.

And you know what….NOTHING WORKED.

He’s still autistic. He’s still severe. Still non-verbal. And I feel more trapped then ever. Our family is still broken.

I couldn’t outrun it. No matter what I did he is still severe. I feel like I failed.

I still feel guilty when I say Cooper probably isn’t going to talk. He isn’t going to be the boy that gets asked to prom. He most likely won’t shoot the winning basket at a basketball game. I know it in my heart. His autism is severe.

He isn’t a genius. He has no amazing skills.

He’s just a boy. My boy. My challenging, exhausting boy who with an isolating disability.

We stopped going places. We stopped going to birthday parties and parks and beaches. We hide in our home on the weekends. All because I can’t handle my own son alone. He’s too big. I can no longer carry him…although he requests and I will try. He puts everything in his mouth. He picks his nose constantly and eats it. He screams and shouts and points. He flaps. He destroys.He typically refuses to wear pants. He runs around naked constantly. He wanders. He refuses to sit.

He’s five. Wait until he’s ten. Or twenty.

I post adorable pictures on Facebook of my sweet boy. I do this because I love him. And people are not away of what severe autism really is. It’s not cute. It’s not a joke. It’s real and hard and scary. It’s head hitting. And a whole lot of kicking. And getting punched in the face in front of people and trying not to cry because you are the mom.

It’s laying in bed at night thinking about how you can’t die before he does. And realizing how poor you are and putting money away for him isn’t possible. It’s really big things that rest on your shoulders.

It’s broken relationships and broken people.

It’s giving up every single damn day and starting over at 4:30 am the next morning. Because that’s just the kid part. Then you have the fight for therapy and services. You have appointments and emails and the money side. The list goes on.

Like this lady says in her wonderfully written post…WE ARE NOT AWARE.

Walk a mile in my shoes. Hell, take 5 steps. Then you’ll know.

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