It’s always a little scary to write about my journey with mental illness. Stigma Fighters invited me to write a piece for them after reading my description of what anxiety feels like. I have long enjoyed Stigma Fighters and the work they do, so I was happy to put a piece together. I hope this resonates with some of you. A big part of ending stigma is discovering we are not alone.
I’m anxious all over. You can’t know me without seeing it. You don’t really need to know me to see it. I am told frequently to calm down. Strangers reassure me that “everything is okay.” And I know they mean well, but it hurts sometimes. I’ve been guilty of this myself—looking at a friend and telling them it’s not as bad as they think without knowing the full story.
That’s the meat right there: not knowing the full story. I write about surviving and work with survivors, and the common theme no matter our topic is that people assume they understand what we are going through when they are only seeing a fraction of what’s in our life at any given moment.
This is similar to the Turkish Shells recipe I posted awhile back, but it’s the Lebanese version. I’ve toned down the garlic a bit. In Lebanon, this has a bite that stays with you for days. Pair it will Tabbouleh to help with garlic breath. A nice garlic bread or other toasted bread makes a lovely accompaniment. Also a tasty pairing: roasted chicken.
1 box spaghetti or noodle of your choice
1 large container yogurt, preferably Greek or full fat
4-5 cloves of garlic, finely smashed (get out your mortar and pestle)
4 tsp finely chopped fresh mint
1 tsp salt
Cook noodles according to package instructions and drain.
Mix yogurt, garlic, mint and salt together and allow to sit in fridge for at least one hour.
Pour yogurt over noodles and mix. Serve immediately or refrigerate and serve cold.
We don’t look like we need help. I’ve spent the last hour bouncing from site to site filling out pre-screening applications for financial support. It’s the same story we face everywhere we go and with everyone we call: with our income, we “shouldn’t” need help. We “shouldn’t” have debt we can’t stay on top of. We “should” be able to afford the enormous medical and community support we need to provide for our child and still take care of ourselves and our other children.
Noah doesn’t look like he’s autistic. By all accounts, he looks like a disagreeable, “spoiled” child. But he’s not. He’s not simply “oppositional” either, as his doctors keep irritatingly labeling him despite diagnosing his autism. Yes, he is capable of communicating extreme displeasure in a highly articulate and offensive manner. That’s how he protects himself from the big, bad world. That is him struggling because life asks too much. There is a difference between disagreeing for the sake of doing so and inability to function agreeably because you are overwhelmed due to your neurological setup. I recognize that the general population chooses anger before curiosity, but I don’t understand why he is getting this response from a specialized medical team who selected us for their program becausehe fits it. Doors. Slamming. All over the place.
I exist full of hope and certainty that things will work out until I seek help from the state. After a single hour, I am deflated. So many people send us resource after resource and I follow through on all of them only to be turned away over and over. There is no help for a family like ours. I wish people would stop sending me these dead end links. I wish they would send me lawyers who knew how to make this work for us, or checklists that tell me step by step how to get the help I have spent countless hours and phone calls and in-person appointments seeking. I’m tired.
I should be happy right now, but I’m seriously bummed. I want to go somewhere dark and cry. I’d planned to write a joyful post today on something other than autism or trauma. I wanted to record a happy memory, but this fruitless gathering of potential resources has exhausted me. My brain keeps trying to take me to that horrible place of comparison, to convince me we are just a drop in the global bucket. Less than a drop. We don’t even matter in comparison. We should just shut up. A woman told me that a few days ago. Even though her words were compassionless, they are rolling around in my head like dice. Along with the words “fuck that.” I’m not doing this for me. This is for a child. What I’m working to offer Noah is the minimum all children deserve. And when I am done working for him, I will go back to working for the world’s other children in need.
But the next step for us is a bake sale. So I will be putting my introversion aside for quite awhile longer. When this is over, I may never use the phone or join a group again. I am doing this for my child. I remind myself of that each time the pain starts building. I can fake extroversion as well as the next girl, but it hurts. Having children frequently means existing outside your safe space. There is no way to be prepared. There is only do.
*If you would like to host a fundraiser on Noah’s behalf, please let me know. I will support you in any way I can.
I’ve never written about Autism and its presence in our home because my son hasn’t been open to it. Since we’ve started our fundraising campaign to get him a service dog, Noah has opened up. He’s willing to put himself out there to get this animal. Our whole family is, which is more significant than you’d think.
Despite what I write about, I am extremely private. There are many aspects of my life (most) I choose not to share in a public manner. This does not affect my honesty. I am unrelentingly transparent when it comes to issues of survivorship in any capacity. But I don’t put my children on display. I give them choices about whether and how they are presented in my writing. Noah has chosen to remain unnamed and invisible. Until now.
He reads over my shoulder when I write about him, occasionally vetoing but mostly watching my understanding of him take shape on the page. This is freeing for me. I think we have had repeat miscommunication over the years because his feelings are so intense he doesn’t believe I could grasp them. But now he sees me spell them out. Not just the feelings but the causes and my feelings and dedication and love for him. This is a great affirmation for him and reminder for me. We will get through this.
I don’t expect you to all run over and follow our GoFundMe campaign. I do want you to know there are regular updates happening there that you are welcome to read. They look inside what ASD and anxiety are like for Noah. He is struggling, but he is open in hopes that sharing may help someone else or that someone else may help him get the dog he needs.
I hope you’ll make it over there. In case that’s not your thing, here’s the latest GoFundMe update where I talk about Noah’s process of anxiety and our achievable dream.
While Noah is sweet, concerned and empathetic, he often gets stuck in negative thought patterns. This stems from a constant low level anxiety that peaks with misunderstanding, most often in social contexts. Say he is playing a typical fighting game with imaginary swords. He and his friends are having a great time. His energy is up. His activity is up. His emotions are up.
Now imagine something unexpected happens. The fighting game is no contact and someone accidentally connects.
This is jarring for anyone. In that situation, I might take a step back to assess, but would most likely end up laughing and apologizing. Noah might do that, too. But he might also get frightened and feel there is a threat. That’s the hard part, because that low level anxiety spikes to high, and then we aren’t talking about “hey, it was an accident” anymore. The new conversation is “you are safe” and “no one wants to hurt you.”
This happened recently with a friend at school. Noah was afraid, but he made a choice in the moment to stuff that fear inside and carry on. He kept a tight lid on it until I’d packed him in the car, taken him to therapy (where he did talk about it with his therapist), and gotten him almost all the way home. But he was hungry and tired, and he couldn’t hold it in anymore. That lid popped off. The next three hours were composed of the cartwheeling aftermath of Noah not understanding play with a friend during which I repeatedly failed to get Noah to eat, drink or calm down. I ended up outside with his brother and sister while he vented inside. Eventually, he ate and was calm if not happy.
These periods of energetic anxiety are coupled with self-loathing and sadness that combine and escalate into paranoia. Noah will articulate his hate of himself repeatedly and threaten self-harm. I can’t tell you what it feels like as a mother to hear this from my child. He believes he is a failure. He hates what he is experiencing, and because he experiences it, he hates himself.
The next step in his emotional process is forecasting harm from external sources. There is no precedent. We don’t spank because we believe it is violence used to bend another’s will rather than educate and instill respect for boundaries. It rips me up when, as happened yesterday, I try to approach Noah for a hug and he starts shrieking and shifts into a defensive posture because he thinks I (or anyone else approaching) am going to hurt him. He expects me to want to. He believes he deserves to be hurt.
When he’s inside the anxiety, I can see him clawing to get out but I can’t reach him. His physical outbursts prevent any type of meaningful reassurance. The best I can do is shout to him sometimes. Most often, I end up sitting by silently or removing his siblings for safety. They see he is in pain and try to comfort him. Their witnessing feeds his shame and grows his anxiety. It’s vicious. It’s horrible.
What’s worse is that every other stranger thinks they have the solution. This leads to unwanted, unsolicited advice and implicit or explicit judgment with Noah present. I pointed to this in the campaign description. He hears it. He sees it. He receives the judgment of the self-righteous citizens who are certain he is destined for some negative fate if we don’t “beat his ass.” One man cornered him on a playground to “discipline” him by shouting at him. He waited to do this until I was busy with another child because “you weren’t taking care of it.” One woman called him a brat in a parking lot and told him he should be ashamed of himself.
Guess what? He already is. He is a small body vibrating painfully with the ridicule that comes from expectation. People love judging a book by its cover.
The point here. Let me find it. I feel like giving up a lot. Just like Noah. The world can be a cruel, cruel place. But when I see donations come in (doesn’t matter the size), I remember that there are people out there who are willing to put curiosity before judgment. Your support is a bolster. The 24 hours like we’ve had? We’ve needed that bolster.
It’s what keeps us committed to this dream of a dog who can interrupt those moments of terror and communicate “You are safe. I’m with you.”
This famous Lebanese salad is a great addition to any afternoon or evening meal. It’s good cold or at room temperature. I’ve even known some to eat it warm!
Prep Time: 30 minutes
2 bunches parsley
3 scallions/spring onions
3 small tomatoes
1/4 cup bulgur or quinoa
7-8 branches mint
juice of 1 and 1/2 lemon
1/4 cup olive oil
1/2 tsp allspice
1-2 tsp salt
1/2 tsp black pepper
Wash and drain bulgur and let stand for 30 minutes OR cook quinoa and allow to cool. Wash and drain parsley, onions and mint and chop all three as finely as possible by hand. Place in a large mixing bowl. Dice the tomatoes in 1/4 inch cubes and add to mixture. To this, add the lemon juice, allspice, salt and pepper. Mix these ingredients together. Now mix in the bulgur. After all the other ingredients have been mixed, add enough of the olive oil to moisturize the salad. The amount of olive oil used depends on personal preference. Cover and refrigerate before serving. Enjoy by scooping with lettuce.
If we were having coffee, I would tell you that many of my days for many, many days have been filled with research on service dogs and whether one might be right for our family. I would share that knowing the answer is “yes” is daunting. And that the the necessary fundraising is a particularly painful task for a family of introverts, but worth the trouble. I would sip and tell you I have been chewing on progress, trying to get its taste. I have been planning and puzzling and hoping. Those are the days, but there are also the nights.
Last night I dreamt of our dog. He hasn’t been born yet, but I dreamt in my deepest sleep of what this dog means. Our dog changed us. We changed for our dog.
This dream was like the many dreams I had while pregnant. My mind was conceiving as I slept. My heart was growing the space to love a new child.
I dreamt and knew I was dreaming. I made our dog a promise of safety, even as the dog offered me the same. I said, “No, it is my job to take care of you. I work first.” And I did. I rearranged the house and the lives inside it. The dog watched me clear and clear and clear the rough spaces. When I was done, the inside of our home felt like an open field. There was an unexpected freedom. An unburdening.
The dream continued and this family evolved. I walked through the dreamscape to see what had moved, what was switched off, what shells had cracked open. What was moving out and what was moving in. Pain sifted off me with each step. Quiet took its place, and I became stronger. And Noah, the child for whom we need this dog, became happier. And our dog found a space in the middle of it all to place his head onto his paws and observe with gentle, confident satisfaction.
The soul stuff of the dog was like the curls of its fur. It was bright and warm and I was soothed despite the enormity of gestation and birth set forth by the dream. My body cramped with growing pains. I woke for a moment. I shifted my legs in the darkness, flexing my feet to ease the knots in my calves. Just as I did in my pregnancies. Then I turned to the side and settled. I found our dog’s head under my hand. I ran my palm along his fur, the warmth of the dream cloaking me until morning.
When I began therapy as an adult, the first skill I had to learn was asking for help. There is nothing I wanted to do less. I would have rather continued on my path of self-loathing and emotional stagnancy, but I had children. I’ve heard it from many mouths that what we want for our children is for them to be better than we are. That statement is true for me. I’ve also heard we have to be the example for them, show them what steps to take. We have to be better than we are for our children to be better than we are.
After our first child was born, my partner and I agreed to apologize. We stopped yelling at each other, calling names, going to bed angry. We quit acting like children. At first, it seemed we were less emotional, but it quickly became clear we’d grown more emotional than we’d ever been. Because every time we said sorry we felt anger, guilt, shame, humility, sadness and love. Love so big we kept at it until there were fewer and fewer offenses to apologize for.
An apology is a request for help in forgiving oneself. “I’m sorry” says “let’s move forward.” It’s a chance to grow beyond a mistake, a request to be seen as more than the impression we’ve given.
I know how important it is to move beyond an initial impression. My son is high-functioning on the Autism spectrum. At first (and second and third) glance, he seems typical. But a deeper look or longer exposure shows him to be reactive and angry. The truth is, he is anxious and afraid. He has an overdeveloped fight or flight response, tending toward fight. It disables him in social settings. It prevents him from comfortably and safely engaging in typical kid activities such as group sports or morning meetings at school.
He made a plan this year to create a new impression of himself in school. He wants people to see that he is funny, friendly, kind and cool. He wants them to know he isn’t angry or mean. That he isn’t spoiled or bratty. He wants kids and adults to know he is a person doing his best–and this is so, so, so critical to his success–because he knows they aren’t going to see how hard it is for him to look like everyone else but frequently not understand what’s going on.
This kid is smart. His intelligence is ridiculous, especially when offset by his underdeveloped emotional maturity. He’s a brilliant powerhouse of insecurity. He is an endless fountain of knowledge and misunderstanding. He is strong. He is beautiful. He is struggling.
We noticed recently that he has been harming himself in subtle ways. Scratching tiny holes in his body, chewing his nails until they are painful, refusing to eat. We know this is a response to the difficult transition back to school. Transitions have always been difficult for him. When his different needs present themselves, they are always in relation to change. A new path to walk, an unexpected ingredient in a meal he thought he knew, a new teacher, a changed lesson time, an illness jarring his routine and so on. He regularly has trouble getting back into his classes when there are sounds or smells or motion he isn’t prepared for in his classroom.
What I’m saying is, he needs help to get there. He was born with instincts that require constant apology even though it’s not fair. He needs support in developing skills in the moment beyond what his therapist and teachers and family can provide. So I’m asking for help in providing that support.
After multiple recommendations, considerable research and significant planning, we are trying to acquire a service animal. The cost is prohibitive, and we are hoping to get by with a well-trained therapy dog. To that end, we have reserved an Australian Labradoodle puppy from a litter due in October. We don’t know yet how we’ll fully pay for the animal or it’s training. We are still hoping we can come up with enough money for full service training. However, we trust that therapy training can be enough and are moving forward.
If you would like to learn more about why or what or how you can help, click here and read our story. I also welcome you passing this link on. You never know who is out there waiting to change a little boy’s life for the better.