Category Archives: developmental disabilities

Being “supermom”

People look at my son, look at me, and say things like “I don’t know how you do it.” Or “god only gives us what we can handle” 

I know they mean well, what I’m thinking is:

First off, I didn’t know I had a choice, and second, bullshit. If there is “GOD“, then I want to climb to the Highest mountain and scream “FUCK YOU!” Holding up my middle finger at the sky because what the hell did I do to deserve this? And more importantly, What did my son do to deserve this? If “GOD” only gives us what”we can handle” then why do we hear about parents who kill their kids? Why do people kill themselves or kill other people? Why do we continually hear about mass shootings and disease wiping out people by the hundreds of thousands? God’s will? Why create only to destroy? The devil? Why doesn’t God protect us then?

But instead, I smile, shrug or laugh and crack a joke to ease the tension because they mean well. They really do. They don’t realize that we hear these things over and over again and I can feel my eye starting to twitch when I hear that pity in someone’s voice.

They think I’m special because I am my son’s mother. I’m not. I’m just a mom. Just because your kid has the flu, doesn’t mean you drive back to the hospital that you delivered your child at and demand a new one…On the contrary, it makes you care more. Makes you “MOM HARDER’. You get set into hyper parent mode and the maternal instincts are seething out of every pore so viciously, you swear you just felt your mammary glands let down and your boobs start to tingle. You care for your sick child and nurse them back to health… Only with autism, or any developmental disorder, that last part never comes. Things just get a little better. So instead of puking out of both ends, the kid still has explosive diarrhea and a lower grade fever. Or now they have an entirely new menu of symptoms and when you bring them to the doctor, they don’t know what to say… They are just as, if not even more, lost than you are.

So, you try a remedy you heard about, try diets, therapies, apps, different laundry detergent and dish soap… You just want your kid to get better and be healthy. You breath a sigh of relief because today the rash is clearing up or maybe the fever is gone, (s)he stopped coughing non-stop or finally has a solid bowel movement; only to have it ALL return after a week and your back to scrubbing vomit and shit out of the carpet and washing laundry non-stop.

Now imagine this is what life is now. An endless cycle of not knowing what is coming and your kid never seems to fully “recover”.

This is autism. There is no “recovery” you kinda get used to it… But you don’t.

Momming in hyper-mode for 9 years straight has left me with crippling anxiety and depression, left me feeling indifferent some days and others I’m feeling like my emotions are contained inside only a piece of wet tissue paper and soon as there is the slightest disturbance to that barrier, they come pouring out like a landslide that just cannot be stopped and I find myself and my partner are trying to catch it all with a tea cup.I’ve made compromise after compromise on things I thought I could/would (n)ever consider.

I’ve gone through phases where I would drink 1-2 bottles of wine almost every evening after putting my son to bed just to stop the trembling of my nerves trying to escape because I’ve been in flight or fight mode for the past 6 hrs because I have OCD and am fecal phobic and my son was going through a phase that he enjoyed smearing shit all over himself, walls, carpet and any other crevice he could cram his tiny fingers into and I screamed at him with tears in my eyes while I sobbed uncontrollably then spent the rest of the day feeling guilty, angry, resentful and just trying to clean the mess and make it up to him and just feeling more guilt along with the pain of chemical burns on my arms because I can’t stop cleaning. I needed something to ease this pain. 2 glasses in, I’m climbing into bed with him holding him while he’s sleeping and pushing me away then just stare at him while he sleeps and looks so peaceful with tears streaming down my face while I tilt my glass to my lips with one hand and wipe the tears and snot onto my sleeve with the other.

I’ve locked myself in the bathroom to eat a half eaten donut my son didn’t finish that I found in my purse.

I’ve spent days on the couch binging on Netflix or playing video games or in the garage painting every piece of furniture that we own and could carry out by myself while my son is at school.

I’ve gone days without eating, showering or talking to another person.

I’ve given my son benadryl after melatonin failed so I could have some time to sleep, regroup, and shower.

I’ve locked him in his bedroom with his iPad, books, toys and swing to keep from losing my shit while I’m trying to cook dinner or wash the dishes.

I’ve let him eat frozen go-gurts, pizza rolls, and bagels all day because I don’t have the energy to fight him to eat something healthy or just to cook anything in general.

I’ve tricked him into trying new things by disguising them as something else.

I’ve capitalized his fear of the hand mixer and blender to my advantage when I want him to stop screeching or doing something destructive or dangerous.

I’ve paid $40 for an app and $30 for a season of Yo Gabba Gabba just to keep my son busy and distracted so he isn’t dragging me to the refrigerator every 2 mins because his meds give him Stoner-ish Munchies.

With struggle comes wisdom and I’ve learned brilliant tricks to get a kid to take meds and get enough fruits and veggies, how to avoid having to change my kid’s sheets everyday, how to hide the taste of kale, how to find shit in carpet and how to get it out. I can find almost anything to help make just about any problem behavior a bit more tolerable.

The point I’m trying to make here, is nobody is prepared for this shit. I’m not special. I’m not stronger than most people. I love my son…. That is all. I love my child because I’m a mother. I’m HIS mother. Loving him is my job. Even if it is a hard job sometimes, it’s not a choice. We don’t get to pick and choose who we love. We don’t get to choose our children. Sure there are days that I clench my fists, bite my lip and think “what the hell was I thinking by having a kid? Why do people do this?” But on the other side of the same token lies the answer… Becoming a mother/father is the most important thing anyone can do for themselves. Because it’s as blissful as it is maddening. It’s as beautiful as it is disgusting and that unconditional love is powerful. That is “how we do it” it has nothing to do with strength or “GOD“… It’s just love for our kids. When people see me on the floor changing my 9 year old’s diaper, and say “how do you do that?” I don’t see a 9 year old. I see my baby. That’s the same ass I’ve been wiping since 2009. I breast fed him so the shit shooting up his back isn’t exactly a new thing… Anyone that loves their kid would do the same. Not ANYONE, but anyone that loves their kid. I have worked with children who’s parents abandoned them at a nursing home because of their disabilities and it was pretty heartbreaking. But then again, who am I to judge? Some people just don’t have it in them to care for someone that needs so much and I get that. I think it would take a different kind of strength to walk away, and that is just not the kind of strength I have.

What people see are the little things parents like us do for our kids that seem normal to us because (at least for parents like me that only had one child) we don’t know any different. We adapt for our kids and find ways to cope. Some healthier than others. We learn to laugh through tragedy, make jokes about the struggle, hell, sometimes we flip our kids the middle finger from the next room or just spend a good 15 mins just talking shit about them and making jokes at their expense when they aren’t around. We know as their parents, our love for them goes unrivaled but kids can be energy leeching, tiresome and annoying little shits. Any parent that says their child doesn’t piss them off is a filthy liar.

We just have to come up with ways to cope and creative ways to get through the day. If you have to take anti-depressants, write poetry, paint, use tinder, play video games or If having a couple glasses (or bottles) of wine at the end of a rough day is what you need to distract yourself to keep from driving your car off of a bridge, then by all means, do what ya gotta do. I feel like we should be allowed to be shitty parents sometimes. We should be allowed to have off-days. Like I said before, nobody is prepared for this shit. Furthermore, few people have any answers and nobody has a real”solution”. We just have to deal. Make the most of it. I take pride that my son can read, is adorable and is ultra affectionate. Has untapped musical talent, Is playful and has an infectious giggle. There are kids out there that are not on the spectrum that can’t or won’t do these things but my little guy is always smiling, singing and ready to cuddle and be tickled. Sure, if I ask him “how was school? What did you have for lunch? Whats your favorite color?” I will not get a response. He simply does not answer them. I’m not sure whether he can’t or won’t but That is fine because I have a stepdaughter that talks enough for the both of them.

Although… Yesterday he walked up to me and said bagel a few times so I gave him one. That was pretty exciting for me. As simple and small it may seem to parents of normally developing children, this is an equivalent to seeing your kid say their first word. Every. Damn. Time.

We autism parents have a full plate of too spicy, bland, or hard to chew food, and someone behind us demanding we have seconds. But when we get to the dessert, it seems to make up for all the trash we had to consume to get to that point. Make no mistake, the discomfort from having more we can handle is still there, The feeling of indigestion is still there, but we forget about it for a second and enjoy that sweet treat that we worked so hard for and it feels incredible because with that, a tiny bit of hope is restored. The future that seems like a pitch black never ending tunnel, looks a tiny bit brighter. I just hope one day, someone would hand my child a flashlight instead of a match. Until then, I will take what we can get and just white knuckle it until the end.

Strike 2

Say what you want about me,  but the moment someone says something about my son,  I will lose my shit.  My son has autism.   Although he is making major strides in therapy, He is considered non-verbal. He does things that most kids do,  bites off more than he can chew,  literally, which is something he did this evening. 

Before i get to the point of this story,  i want to share that my child is brilliant.  At least he is to me.  I’ve witnessed this child do things well beyond his years, and signs of extreme intelligence.  I’ve watched him compose music on a keyboard,  sing complicated songs and riffs at as young as 18 months, at 11 months and was almost potty trained as well… my son is different, but not less.  He’s important and amazing.  Just because it seems like he isn’t hearing what your saying,  doesn’t mean he’s not listening.  He is.  He knows when people are talking about him.  He knows he’s different and doesn’t need people, especially adults whom he trusts, to point these things out which is precisely what happened tonight. 

We’re sitting in the living room having dinner.  (Not our usual routine, but on occasion,  we will) i made my son a corn dog and sliced it up into bite sized pieces.  (I’m not certain if his father didn’t feed him as recently as he had claimed,  but my son looked and said “eat” the second i had him in my arms.)
And immediately my son started shoveling pieces into his mouth.  I guess one was a bit bigger because he was trying to swallow,  and he gagged, then chewed a couple times tried to swallow again  and gagged.  At that point,  a needless, senseless, insensitive comment was thrown out there by another adult in the room. “Now i don’t understand,  why you say he’s so smart, why would he do that? ” i tell the person that the comment hurt my feelings and i get accused of being overly sensitive.  Then it keeps on coming. “You say he’s brilliant,  he’s just another kid”

Fuck you.  You’ve known him for 6 months.  I’ve known him for 6 years.  His entire life.  You’re nothing special.  You have good qualities,  but this particular flaw of inadvertently tearing those around you down for no good reason is going to be the death of ‘us’.
Just because you have a thought, doesn’t mean you have to share it.  There is something called tact.  A skill you’re in dire need of aquiring. Insulting people isn’t going to change their opinions. You can’t force an idea. Being the mother of a child with autism comes with enough challenges and emotional turmoil. I don’t need a loved one to lasso me every time i hey to the top on the wall only to yank me down into the mud.  You insult my son,  there will be hell to pay.