Autism Is A Gift?

Before I start, I need to state how hard this was to write. I cried all through out. I share this because I know I am not alone and I would love to meet others struggling with the same. If this offends you… I can’t help what I feel and I won’t apologize for it. I refuse to suppress anymore.

My husband and I decided to have our child. It was a mutual decision. One that made sense to me at the time. I wanted the experience of motherhood earlier in life. I was with someone who I knew would be an amazing parent. It felt perfect.

When expecting a baby, we tend to wonder what the child will be like. We imagine pigtailed princesses, tomboys, tiny all star athletes and the semblance of yourself somewhere in this little being.

None of us realize that having a child does not guarantee that he or she will be healthy or even disabled. It isn’t in our wildest dreams. Actually, it’s something that’s tucked away somewhere so far beyond your conscience, you might even feel it’s impossible. At least that’s what the experience was like for me.

I gave birth to a son. Ethan. His name brings a smile to my face. I fell in love with everything about him, from head to toe. I loved everything about being his mother. It brought me joy and pride to watch him grow. It created a curiosity in me that resembled a hunger. Who was he? Would he love video games and baseball like his dad? Would he hate small talk and crave discussions of our existence and conspiracy theories like his mom?

Ethan was 6 months old when his pediatrician told me he wasn’t hitting his milestones. She recommended that we contact early intervention to have him evaluated for any sort of delays or disabilities. I declined. I was told by every mother I knew, that all children grew at their own pace. That’s what was happening here. That was all.

Ethan learned to sit and crawl later than was expected. He took his first steps when he was a year and a half. Still, I believed this was normal. What kept me up at night was that he wasn’t talking. No phrases. Nada. I would attempt to play with him at home or I’d take him to the park. He no longer made eye contact with me. He no longer smiled or interacted with me. He didn’t respond to his name, to my voice. I was a ghost. It hurt. God did it hurt.

I told myself I’d contact early intervention if he turned two years old and was not speaking. I found myself making that phone call shortly after his second birthday after seeing no signs of improvement. The process went rather smoothly and Ethan was to be evaluated by a psychologist.

The psychologist was scheduled to visit with us at our home. She turned to me in under five minutes of her visit and told me my son was severely autistic. I felt like I’d received a hard punch to the stomach. Autism. My son? I didn’t know anything about it. It didn’t run in my family. It didn’t run in my husband’s family.

All these thoughts and fears ran through my mind. That’s it, his life is over. He’ll never lead a normal life. He won’t grow to become a man who will get married, go to college, have the ability to support himself.

In that moment, I wanted to die. I’d recently found out I had a life threatening Illness that I didn’t know I’d survive from. Hearing this broke what was left of me. I was doomed. My son, who hadn’t even begun to live his life, was doomed. I cried and cried until I thought my body had run dry. But…I couldn’t allow my emotions to paralyze me. I folded away that pain and put it away. What was the next step? What could we do right NOW to help him?

Ethan went on to receive at home, multiple hour long therapy sessions with ABA therapists, speech therapists, OT specialists, and PT specialists 5 times a week. Any service he qualified for, we made sure he got.

He began attending a center based therapy daycare, where he received all of services. He rode his first school bus at the age of 2. Once Ethan aged out of the first location, we worked closely with a social worker and with her help, got him into the best preschool that provided the services that Ethan required.

Through out this process, I didn’t allow myself to fear. I didn’t allow myself to cry. I didn’t allow myself to be human. I struggle with anxiety, which usually has a lot to do with panicking over the future. I couldn’t even feel that. I couldn’t help the diagnosis, but I could help how much I did to help my son. So I immersed myself in that.

I was sick and Ethan needed me, so I became a stay at home mother. It wasn’t where I ever saw myself in life, but my body needed to heal, and even if it didn’t, my son needed me. I would have never forgiven myself if I hadn’t done everything humanly possible to help my son progress. In my eyes, who my son would become in the future would be a result of the parenting he received. If that meant I needed to be home for him to receive his services and for me to learn teaching/therapeutic tactics to help him as well, that’s where the fuck I was going to be.

So, this is my life. I’m a stay at home mom to an autistic child. He is six years old now. He loves cars, anything Minion related, counts, sings, requests things (food especially). All on his own terms, of course. His room becomes a jungle gym during sleeping hours. He doesn’t eat anything unless it’s crunchy. He is unable to dress himself. He needs help with most basic things, including using the bathroom. I currently change his diapers.

It took me a long time to muster up the courage to talk about this. Why? I didn’t want people looking at my son with pity. I didn’t want people finding out about his diagnosis and automatically viewing him as the poster child for autism, without even getting to know him. I didn’t want unsolicited advice from inexperienced parents who hadn’t even heard of autism. I didn’t want my parenting bashed. I didn’t want to be incriminated by other autism mothers for not pretending this was a breeze or being unhappy. For not using the correct terminology. I didn’t want to hear the asininity that comes from crude people who glamorize having a disabled child, like my strife was invalid and an exaggeration.

Worst of all, I did not want to hear the phrase I loathe the most: Autism is a gift. A gift to whom exactly? When my son is crying out of frustration because he can’t verbalize words he knows and understands, do you think he feels this is a gift? Do you think he feels it’s a gift when I have to change his diaper with cold wipes in the early morning? Don’t you think at this point he feels it’s intrusive? Is it a gift that he has to be held down by five people in order to be examined because he’s scared of being bound down? Is it a gift that we use a high chair and a stroller at the age of 6? Is it a gift when he can’t enjoy a movie at a cinema like the typical child can because this disability doesn’t allow for it? Is it a gift that he has no sense of danger and could kill himself if not consistently monitored?

Saying autism is a gift is dangerous. Its divisive. It doesn’t allow for authenticity. It’s the reason mothers like me isolate themselves from the world. We cannot relate to parents with typical children, and we can’t relate to the hard core, sanctimonious, politically correct autism parents who claim to do it all like it’s effortless. We feel there is no support for us. I don’t want condemnation for not acting and feeling like our world is fantastic. I don’t want criticism for confessing that this isn’t easy and that it’s painful every single day I watch my son struggle.

If we could choose a world where autism did not exist, that’s the world we would pick. That’s the cold honest truth. To hear autism is a gift is like a slap in the face. It undermines the struggle both parent and child experience. It dismisses the agony I STILL hold so heavy in my heart because I am still mourning. I’m in mourning for the child I idealized while I was pregnant. While I love my son, while I would do everything in my power to make sure he’s taken care of, I wouldn’t wish this pain on anyone.

What I want the most someday? To sit with my son one day and have a long, in-depth conversation with him. To bond and learn about him. To find out what’s going on in that little head of his. If I never get that, that’s okay as well. I will always love him unconditionally. He’s my breathing, walking and talking heart. I just wish more parents were talking about this. I just wish more parents were honest about how hard this is. We could use the support. I know I could.

Dear Self, 

You washed the dishes. That’s a big fucking deal. You HATE washing dishes and you pushed through. You didn’t want to brush your teeth, you did. You didn’t want to shower, you did. Didn’t want to wash your hair and you did. You pumiced your feet. You watched numerous things to laugh to lift your mood. You practiced self care. You’re even journaling. All while being fucking depressed. It’s a big deal. You’re doing a good job. Don’t beat yourself up for what you couldn’t or haven’t done. Give yourself credit for that. Be proud of yourself for that. 

This is what you’re supposed to do when you’re depressed. You’re supposed to take responsibility for yourself. You’re supposed to identify what’s wrong, and try to help yourself. You’re supposed to practice your coping skills. You did that. You’re supposed to try even though you don’t want to. You pushed through it. 

I know you may not feel this is a big deal, but if someone else told you this, you would congratulate them. You would tell them to be proud because they could’ve chosen to do nothing and they chose to fight. 

If you had chosen to do nothing, well, that’s okay too. Our best does not look the same everyday. Staying in bed could be your best one day and that’s fine. You’re doing your best today. I love you. I’ll always look out for you. 

Remember, this isn’t you. This gloom and doom you’re feeling. The sinking in your gut? That’s depression. It’s a disease. You’re going through the symptoms and you’re fighting them. I’m proud of you. 

Love, 

Self  

The Mastery That Is Self Care

I have a diagnosis of Bipolar 2 (major depression-mild manic episodes) and generalized anxiety disorder. I found out at the age of 22. I admitted myself into a facility because I was experiencing racing thoughts, suicidal ideation and anxiety. I was drinking excessively and taking sleeping pills as well. If I could’ve had it my way, I would’ve slept for all of eternity. I didn’t want to feel, so did what I could to numb myself. My only suicide attempt was at 15, so clearly I was struggling way before my initial diagnosis. 

Since then, I’ve played an active role towards my recovery and stability. A lot of trial and error, but I’ve learned and have grown a lot along the way. I’ve researched immensely and have educated myself on the ins and outs of mental illness. I’ve read books, I’ve studied articles and statistics.

I take medication to correct the chemical imbalance I struggle with. I go to therapy and have been seeing a therapist on and off, for 12 years now. I am straight forward with my doctor, even if it pains me. The point of seeking mental help is to learn and transform. To evolve into the best version of yourself. That’s not supposed to be a comfortable process. You sure as hell will not reach it by being dishonest or omitting information from the one person whose job is to guide you towards the path to improvement. 

I’m going to share some transformative things I’ve learned in my life. Some of the epiphanies that have allowed me to see life in a refreshingly, new perspective. I hope this information helps you, because it saved me. I’m only paying it forward. 

At the very brink of any strong emotion, that pang that sucker punches you, leaving you internally stunned and frozen; I leave the situation to give myself a moment of clarity. If I cannot leave where I am, I choose to behave calmly. I accept that I cannot give a valid, logical, responsible response until I’m tranquil.

Then, I journal in my notepad on my phone in the style of free association writing. Free association, according to the Merriam-Webster dictionary is the expression (as by speaking or writing) the content of consciousness without censorship as an aid in gaining access to unconscious processes especially in psychoanalysis: the reporting of the first thought that comes to mind in response to a given stimulus (as a word). 

You are writing everything you are thinking at the moment. All those thoughts, shooting like stars across the velvety sky, in your mind? Write them down. No matter how stupid, shameful, silly, embarrassing… these words are for your eyes only. It’s important to be as candid as possible. 

Is this uncomfortable? Absolutely. Is complete honesty necessary? Absolutely. If you are not genuine, this is pointless. The reason for this is to dig DEEP. In order to heal, you have to figure out the root of those feelings. Where they are originating from? Why are they happening now? In order to get better, you have to try something you’ve never done before. Say exercising, for example. The first time someone ever did a push up was way harder than the 500th they trained their way up to. 

This is an immediately release, similar to venting to a friend. All of the emotional dumping without draining someone else and feeling like a weight has been lifted off your shoulders as a result. When you’re done, read what you’ve written. Pretend you’re reading someone else’s words. Imagine your words as a story with fictional characters in a film. This will allow you to think objectively. Thinking neutrally will help you observe your thoughts and feelings in a non biased way. 

Read your words over and over again. It will relax you, also providing you with a clarity of the emotion you’re experiencing. This is essential because identifying this emotion will help you understand yourself and your needs better. 

When reading what you’ve written, there are a couple of things you must be accept here. Now, this isn’t simple. I do promise as hard as this is, once you do, the quality of your life will improve. 

Okay. Say this with me. Write it down. Paste it on your wall if you need to. 

You cannot stress what you cannot control. You cannot control what you feel. You cannot control what someone else feels. You cannot control someone else’s actions and choices. You cannot control someone else’s thoughts. You cannot control someone’s opinion of you. You cannot make someone like you. You cannot make everyone happy. It is your job, and your job only to make YOURSELF happy. The people around you either add to that happiness or have to go because they will hinder your joy. 

Instead, redirect your focus on what you CAN control. You can control the way you react to the dumb shit people will do. You can control your own actions. You can choose to take responsibility of your own happiness and fulfillment. Trying to do the same for others is exhausting and impossible. You might as well avert the energy towards yourself. 

Accepting all of this is powerful. It eliminates the chunk of what mentally burdens us often, the inevitable. It forces us to practice self care. 

My therapist taught me something I now live my life by. “When you’re on an airplane, you are told in an emergency to put your own oxygen mask on first. You are of no help to anyone, if you haven’t taken care of yourself first”. 

You cannot love yourself fully if you have not learned self care and self preservation. You cannot fully love someone else if you haven’t learned this. You cannot be the best version of yourself to your significant other, to your children, to your family, to your friends, to your employer or to yourself if you do not learn to do this. Self care is not selfish. It’s survival. 

After you come to terms with the situation, you should be able to target the exact emotion you’re struggling with. That’s when coping skills come into the picture. Coping skills are techniques that help us survive stressful situations in a safe and productive manner. Showering, going for a walk, meditation, meditation music, nature sounds, using perfume or scented candle in your favorite scent, exercise, coloring, watching a funny film, crying, deep breathing, singing, dancing, and reciting positive affirmations are all awesome coping skills. 

You also have the option of writing a list of activities that make fill you with bliss. You can choose to treat yourself by performing actions you’ve listed. This is a more personalized approach to coping skills. They may even work more effectively because they are designed for your specific needs. 

Also, beware of negative coping skills. Do not integrate them into your list accidentally. If you find yourself doing the following, step away for a moment and contemplate to yourself “Is this action productive towards my recovery?” 

Some examples of negative coping skills are criticizing yourself (negative self-talk), driving fast in a car, chewing your finger nails, becoming violent or aggressive with someone, eating too much or too little, overloading with caffeine, drinking alcohol, yelling at your significant other, children or friends, taking recreational drugs, as well as isolating yourself from family and friends. This may seem obvious, but mental illness can skew your perception so they need to be discussed.  

When you find yourself in a fragile state of mind, retreat to your favorite coping skills. Keep in mind, you’re feeling sick that day. Imagine yourself with the flu. You’d be gentle with yourself. You’d give yourself the time to heal. You’d do what you had to to rest. You wouldn’t plague yourself with critical remarks. You’d nurse yourself back to a healthy state. It’s the same with mental illness. Love yourself enough to prioritize self care and self preservation. It’s your obligation to do so. 

I encourage anyone who suspects they have a mental illness to see a mental health professional. This piece is not intended to substitute professional help. However, this is not a journey that’s safe enough to travel alone and I will always stand by those who are agonizing in quietude. Much love to you all. 

No One Gives A Fuck About Brain Flu

An episode of mania or depression feels like being sick with the flu. 

When you have the flu, your body goes out of whack. Your body felt great yesterday, today you ache all over. Your temperature was normal yesterday. Now you’re burning up like an oven. Your nose was capable of breathing in fresh air yesterday. Today, it’s clogged, runny and in pain from sneezing and wiping your nose. Your throat and lungs were fine yesterday, now the congestion is thick and you’ve coughed to the extent of vomiting. Your throat now feels like it’s been dragged against sand paper. 

Except this time, the flu is in your brain. Everything that could’ve functioned yesterday, does not today. You were energetic yesterday, today you are lethargic. You were sharp, ambitious, and funny yesterday; and today, a complete lack of focus and apathy. You could’ve felt ecstatic yesterday, yet feel the level of sadness felt when losing a loved one. You could’ve loved yourself and looked forward to the future yesterday. Yet today, hate every fiber of your being and wouldn’t give a damn about what’s to come. You could’ve felt so blessed to be alive yesterday; Today you are planning your suicide. 

Except when your brain has the flu, it doesn’t go away in about 5-7 days. You don’t know when brain flu will go away.  A day, weeks, months… Whose to say? Also, brain flu WILL come back periodically. It’s inevitable. 

When you have the flu, people feel sympathy for you. They are empathetic and compassionate. They encourage you to rest. They offer to come to your home to help you. Even cook and clean. If you need to throw up, your hair is held back. Your medicine is given to you while you rest in bed. People concern themselves about you. 

When your brain has the flu, no one cares. They assume apathy is laziness. That being withdrawn and socially anxious means you’re arrogant. When you are feeling hopeless, mentally drained, and self hatred, that you’re exaggerating, cynical and making self deprecating jokes.

Finally, when you’ve lost all will to live because your symptoms won’t go away or got worse, they will label you selfish or tell everyone they loved you so much. Yet, the last time they called you was 4 years ago. 

Imagine constantly being kicked in the gut while having the flu. Being looked at with disgust and being told to “Suck it up.” That’s what it feels like when someone has brain flu. 

That’s where we are in life. That is the extent of  our education and concern with mental illness. That’s the limit of our evolution. How does that make you feel?

What THIS feels like

When a person is struggling with mental illness, there’s a tremendous sense of guilt experienced that people will never understand. 

There’s a remorse, a resentment one holds for themselves. A sense of self loathing for not being the best parent you wish you could be. A self-condemnation for lacking the capability to be the “ideal” spouse. A culpability for not being able to function like the standard human who is able to support themselves. A humiliation for being unable to handle life’s simple tasks without drowning in them.

The daily mission becomes to survive. That’s your job. Coping skill, after coping skill, after coping skill. Self help books, essential oils, candles, support groups, walking, meditation…Shit, you’ve got the whole tool box! Well done! 

You’ve brought yourself up, good for you. Success…but only for today… because you know… Oh! How well do you know… the slightest trigger could bring you…. 

Right. Back. To. Square. One. 

That part where you feel like the sun left the Earth. It’s up to you to use your tools and dig. Dig, dig and dig. Climb, climb and climb, towards the ray of light peering through that little hole in the roof of the cave you’re living in. 
Finally, hands bloodied and raw, you’re out. Job well done. 

Up until the next time something sets you off or overwhelms you….

Back. To. Square. One. 

You want to know the worst part of all of it? Trying to explain this to someone who’s never experienced it. The look on a persons face… the disgust, confusion, the pity, the annoyance, the exasperation….What’s worse, you can’t even blame them! You know that what’s coming out of your mouth sounds like a crock of shit. Like some sort of alibi, a cop out as an answer for why you can’t seem to get your shit together.

Except, why would anyone make this shit up? Why on Earth would a human being “pretend” to be mentally ill? There’s no gratification in feeling inadequate. There’s no fulfillment in being looked down upon. There’s no pride in feeling and appearing useless. 

So…seek help? Sounds easy enough, right? Except it’s not. You do so, and you are transferred to a million and one departments. You’re put on hold, countless times before speaking to a human being, only to be told cheerfully “Sorry, we can’t help you” right before receiving a hang up and being left with only a deafening dial tone to listen to. You’re referred to clinic after clinic before finding the right one. Guess what though? They don’t have their next opening until the next six months. So, that suicidal thought you had? Hold that thought. You can discuss that with your therapist in September. 

You can always admit yourself to a hospital, right? Except the conditions you have to go through to do, so are disgusting. Being exposed to others much more unhinged than you are. In the outside world, you were afraid of yourself. Now, other people are a threat. Others who are experiencing such paranoia, they’ve imagined you’ve engaged in some sort of dilemma with them. They now want to physically fight with you. Another demanding a shower, but not being given a towel immediately, so he strips for all to see his penis. Only to then proceed in giving himself a birdbath in the communal sink. Or trying to talk to a loved on the phone, and having another patient hovering over you for the sake of having something to do. Let’s not forget! There’s always the option to be shipped off to a facility in another state, hours away from family and friends being able to visit, if this one isn’t to your liking. Oh, how rejuvenating.

This is why people give up and decide the better option is to not exist. Not because they are weak. Not because they decided to give up. It’s because they are EXHAUSTED. All options were exercised and they failed. Failed by those who “didn’t see it coming”. Failed by a very flawed mental health system. Failed by those who chose judgement over putting that expensive smart phone to use and learning about the cause. Failing to learn that this demon you’re facing, it’s as real as the wind, the oxygen in the room and the blood that pumps through all our veins. 

People don’t give up because they are cowards. People give up because after all that digging, the climbing, desperately clawing at small ray of light shining above them, they are destitute, depleted. They are bloodied, bruised and bare. They decide that surrendering to the nothingness that’s been tempting them all along, just might be better than the pain that’s haunted them for ages.

 
Want to help someone you suspect/know is mentally ill? You probably do know someone, before you assume you don’t, FYI. This is the order of top ten leading deaths in the US. 

1. Heart disease

2. Cancer (malignant neoplasms)

3. Chronic lower respiratory disease

4. Accidents (unintentional injuries)

5. Stroke (cerebrovascular diseases)

6. Alzheimer’s disease

7. Diabetes

8. Influenza and pneumonia

9. Kidney disease (nephritis, nephrotic syndrome, and nephrosis)

10. Suicide 

Now, according to statistics, 1 in every 4-5 people are struggling with a mental illness. 
My friends, you do the math. 
RESEARCH about it, especially before trying to hand over advice. Reach out to them. Ask them if they are ok. If they want to talk, and if so, listen before trying to find a solution. Sometimes, people just want to be heard. Offer to visit. Be present, emotionally supportive, open minded and free of judgement. Be forgiving and learn how to distinguish your loved ones actions from the disease. 

It’s not your job to fix/heal someone. However, the guilt you will feel if you had the opportunity to offer the support and you refused because you decided you had something better to do instead, is eternal. One small gesture can make a world of a difference in a person mentally suffering.

To my friends who are suffering silently,
If any of you are ever struggling mentally and need to speak to someone immediately, here are some resources for you to use: 

1-800-Suicide

1-800-784-2433

1-888-NYC-WELL

1-888-692-9355
You can also chat or text with a mental health counselor at 
Www.SuicidePreventionLifeLine.Org
https://nycwell.cityofnewyork.us/en/