Ten Best Things About Having a Non-Verbal Autistic Daughter

"Yes, there are ten," I reassured my husband over a breakfast of brownies early this morning. (I don't know about you but I'm all about feeding my feelings.)

1. You don't stress about teaching them things like how to tie their shoes or ride a two wheeler.
2. You can dress her however you want. No arguments about oversexed clothes, inevitably escalating to age appropriate discussions regarding our cultures expectation and the subsequent unfairness of female modesty.
3. You don't have to worry if they'll choose the right friends to hang out with or not.
4. Sibling rivalry with your other kids? She's above all that.
5. Tired of spending money on Polly Pockets only to vacuum them all up? No worries there.
6. Debates and/or negotiations over curfew? Nah, she loves being at home just as much as you do.
7. No need to buy a shotgun to scare her first date.
8. You know those awkward years when all you want to do is give your kid a hug but know if you do you'll risk them yelling, "MOOOOM!!!" only to feel ostracized by them in the days that follow? Yeah, she's all for parental hugs.
9. No sitting around the kitchen table, looking over their shoulder, struggling to understand how to help them with their homework without admitting that they may just be smarter than you.
10. No goodbyes.

My oldest daughter will be eighteen in just over six months. She has always been independent and stubborn which, if I'll be completely honest, she inherited from her mother. Lately I've been thinking back to every choice I made with her; curfews, friends, dating, school and the like. Was it the right choice? Should I have done things differently? What about in this situation or that? The stress of having a child who will soon have the choice to leave home I want to say is probably one of the worst kinds of stress you can have as a parent.

Aside from a few months here and there, I ultimately left home when I turned sixteen. I never had that official "goodbye" moment with my own parents until they retired a few years later. I was a single mom of this soon-to-be eighteen-year-old-of-mine-newborn, I was self-sufficient, and had my own apartment. I grew up very quick and had multiple rude awakenings that I never want my own children to experience. But I think ultimately I, along with any other parents reading this who may soon find themselves in the same position, need to take comfort in that you did the best you could in any given situation at that time. If that doesn't bring you peace, then just reach for the nearest batch of brownies.

Yes having a perpetual child for the rest of your life hinders any plans of extended backpacking and trips to Europe, but she's yours forever; stuck in the most literal version of Neverland that I could ever think of.

Sundowners

For the past couple of nights, Evie seems to be going through the Autism equivalent of sundowners. She’s sweet during the day, happily stomping around the house doing her own thing but after five, little Miss Hyde comes out. Dinner can’t be cooked fast enough and nothing can be done to keep her happy for even twenty minutes, making for twenty minutes of pure hell. (1200 seconds if you were wondering.)

She doesn’t scream per se, it’s more of an intermittent whine or stuttering cackle of varying decibels, something like those mandrake things in Chamber of Secrets would do before they let out the blood

curdling scream requiring earmuffs. While she’s doing this, she’ll move from myself to the hot stove with ceramic shards sticking out of it, to the fridge where she tries so hard to open it, shaking the appliance in the process. I’ll get her some milk, she’ll take a sip then throw the cup, spilling whatever leftovers everywhere then start again.

It went on for almost an hour tonight. At one point I had thought of filming it, but ultimately couldn’t. There are a couple things about autism that bothers me. The notions that 1. They’re all the same-that because your neighbors brothers kid has autism you somehow know what we go through and 2. All the happy feel good stories about autism; “Car wash employs autism only workers.”  and my personal favorite “Autistic girl competes in beautypageant.” (yeah I'm calling bullshit on that one.) Don’t get me wrong, I see some benefit from sharing such stories but it’s not real. Not for the majority of parents with severely autistic children who can’t do such tasks. Instead of inspiring they make you realize what your kid can’t do. 

A couple years ago, a New Jersey woman (I think) filmed how she calms her full grown autistic son while he’s having a meltdown. Twice her size, he was swinging his fists and banging his head on the ground. At first, seeing a parent physically sit on her child it’s easy to scream child abuse, but looking at the big picture, she did what needed to be done and no doubt later, she cried.  I applaud her for doing that as it paints a very realistic picture of what parents go through, with no fuzzy ending.

I didn’t film Evie because,  ultimately she isn’t that bad. Yes even being completely non verbal, screaming, pulling with all her might to open the fridge (doors are secured with a dog collar), screaming, dumping milk everywhere, screaming, not sleeping at night, screaming, and being unsafe on playsets she doesn’t get physically abusive which from what I understand is practically unheard of in a non-verbal/non-communicative child. I don’t know, maybe I should have. For empathy perhaps? Showing the interwebs my daughter isn't always sweet? I don’t know.

What I do know is over the summer she’s beginning to be more physically difficult in other ways. Since she is too long for the bathtub, she wont lay down. We don’t have a sprayer hose (thanks to her extremely active and imaginative older brother) which makes bathtime very difficult. Attempting to maintain good body mechanics  is near impossible when trying to keep a 7 year old kid in the bath. I still have to pull her out of the car and she’s staring to realize, if she death drops to the ground when her sibs try and bring her inside, they stop and she can run off. This leaves my husband or I to carry her in. For the past month or so I’ve started to get really bad back aches. I thought maybe it was due to not rotating my work shoes… And sleep. For a while she was sleeping through the night but now she’s back to being up laughing, playing, hosting Evies dance party, party of one from 3am till 6am. People wonder how I can work night shift. It’s because I get the best sleep during the day since Evies awake and out of the room.

I don’t know if she’s just getting older or she realizes that she wont be going back to her school anytime soon. Yes that school. The school we moved here for and essentially sacrificed the well being of another child for in moving here. Her schools program is changing due to fiscal reasons and although ultimately it’s for the better, unless your insurance covers ABA (the only evidenced based treatment of autism) the monthly cost is unmanageable. Of course here in Utah, location of the highest rate of autism in the country, the major Utah based insurance company doesn’t cover AB,  now giving us a slew of new hoops to jump through with the slight chance she’ll still make it before January.

In the meantime, she’ll be at home. Yeah we could put her in our local school but then it just brings it all home that we basically came to Utah for nothing. I know I need to have more faith things will work out but I’m tired. I’m exhausted. My family is exhausted and positivity seems to be a rare commodity that takes much longer to replenish after being used nowadays. 

We were due.

Passed my NCLEX this week and can officially say I an now a Registered Nurse. I still have eight classes to take until my bachelors but I am taking one at a time to give myself a well-deserved break. No more clinicals, no more labs, just 24 credits of literal BS. Nursing theory, nursing management, evidence based practice... At least with this program I can choose two nursing electives and I can't tell you how much I'm looking forward to NRSG 3070: Threats and Crises: Nursing Response. Terrorism, wars, and natural disasters here I come!

But I had just finished an assignment that is due tomorrow earlier this evening when Evie, who had been feeling off for the past couple days, had reached her point.

Normally, she is a very easy going little girl. When it was time for dinner, even before dinner, she was crying. I wish I could give you something to compare it to but the best I can is to that of a mandrake.  Not as high pitched but just as loud; best I can describe it is colic but with the lungs of a seven-year-old.

We took her temperature, offered varying episodes of Spongebob, she had pooped today but still she screamed. Now she ads hitting with her screaming. Not us fortunately, but whatever inanimate object is closest to her. (However, she did have a record eight attempts at biting us out of frustration.)

We tried to feed her one of her favorite meals. She wasn't having it. After ten minutes of even more screaming and pounding on the table we figured she was exhausted from not sleeping well last night and I decided to give her a bath.

I ran the water a little warmer than usual (she loves it at near hot tub temperature), stripped her down, put her in, and knelt beside the tub.

Her screams slowly turned into whimpers as I reached over and slowly poured water on her back, moving up to her hair.

There's a song in my religion that will bring a parent to tears particularly if there is something challenging with their children. I started to sing. Admittedly, I can't sing worth crap but it was more to calm myself than it was for Evie.

I am a Child of God,

And He has sent me here.
Has given me an earthly home,

With parents kind and dear.

Lead me, guide me,

Walk beside me. 

Help me find the way.

Teach me all that I must do, 

To live with him someday.

I am a Child of God,

And so my needs are great...

It was at this point I could not continue and became a hot emotional mess. However, Evie was now lying back in the water looking up at me, making a connection that I have not seen for a very long time.

So I continued...

Help me to understand His words,

Before it grows too late.

At this point I heard, "Pull up your pants. Your butt crack is showing" coming from my nine-year-old in the hallway.

Already upset and drained, I naturally yelled at him which, naturally, set Evie off again screaming.

I started to sing again and to my amazement, she made eye contact with me and settled down. Then I realized, she wasn't looking at me, but at the vanity light over my right shoulder. There wasn't any real connection, it was just my special little girl getting lost in the light. 

She sat up and began to pound the faucet so I ran the water for, quickly brushed her teeth, put on her pajamas and passed her off to my husband who had just finished cleaning up after dinner.

He is still trying to get her to sleep, granted I haven't heard her scream for a while. 

I hope she was just tired and tomorrow she will return to her happy self but for right now I'm going to be selfish and say I'm tired. I'm so very tired. 

The Answer to Life, the Universe, and Everything.

There’s one thing about having a special needs child that doesn’t really occur to you when you first find out about their diagnosis. Of course you morn for the child you expected to have but ultimately you change and adapt everything about your life to accommodate this little being. When your child grows up and still retains that lower level of cognition, what do you do?

Sure they still like to go to playgrounds, libraries and enjoy them to the extent that they can but what of the other children? Clearly the older that special needs children get, the more obvious it is to others that they are special or there is something wrong which makes the reactions of the norms more blatant and obvious.

We took our daughter to the library the other day. She loves it. There’s one particular spot in the storytime area she particularly loves. A muted eggplant ceiling with columns covered in colorful mosaic tile, a circular seating area recessed a few steps into the ground with a long with a very bright Ikea-looking chandelier makes for Evie heaven.  She shows this love and enjoyment by standing in place, stomping her feet while pumping her hands up and down while loudly exclaiming, “Aaahhheeeeehhaaaa“ and other variations.

 Naturally the other children in the area stopped immediately and stared. I know I should have asked them if they have any questions but I can’t trust myself to sound outright rude and I’d rather not emotionally scar children I don’t know over being curious. Instead I waited for their parents nearby to say something. Anything as did my husband when he overheard a child ask their parent repeatedly, “Why doesn’t that girl over there talk? What’s wrong with her?”

A similar thing happened this week which prompted this post. Evie went to sit down in her class and when she started her usual greeting of “Aaaa-eeehee eh-eh aheh,” the other children in her class shifted and even moved away from her. Of course, Evie being the princess that she is didn’t notice and continued to sit and be in her happy little world.  But my husband did, he told me about it and I soon forgot.  But later, he turned to me and said, “I keep thinking about it… but at least Evie doesn’t notice.”

It’s true you know. Why do we protect our kids so much, especially severely disabled ones? As parents I think it’s more to protect ourselves and the idea there really isn't much we can do about how others act towards our children. I have no doubt that my daughter has a sense of self-awareness on some cognitive level. She understands dangerous situations, she knows who her family is, she gives me more kisses when I’ve been gone. She understands who to go to when she needs something and understands if she runs by me with a lidless milk jug, I will immediately get up and run after her. It’s definitely something you don’t prepare for, how you are going to feel about certain situations not necessarily your child.

The older I get the more I feel that the question, THE question is not the ultimate answer to life, the universe, and everything (brownie points if you thought 42), but it is how can we teach sincere empathy to our children?  Can it be taught? I think about how I was as a kid and I probably would have done the same to be honest. I would have told my parents I saw some strange girl and they, at least my mom, would have guilt tripped me into being nice so the next time I saw them, I would sit closer. Yes as teachers and parents we can talk and even show through our actions how to be accepting but what happens when you’re not there? I’ve had parents come up to me and tell me how much their children enjoy being around Evie, perhaps more so at times when adults and teachers are around. I don’t doubt as Evie and her normal peers get older there will be more staring and unintentional musical chairs and I suppose as much as I would like her to be more cognitively aware, I fear it.

 So what can parents of normal children do? If you see your child staring or if your child asks a question like “Why does that person walk funny?” or “Why doesn’t’ that girl talk?”Answer it. Even if they answer is “I don’t know,” it’s okay. Children love it when we admit we don’t know something.  I’d like to think more often than not my brothers and sisters in the special needs parental universe would welcome a parent who came up and politely asked about their child. They want you to ask. They want you to know what’s wrong with your child so you can teach your own. This may not be the case with parents of younger children but I tell you if they have a severely disabled child, by the time that child is school age, those parents have heard possibly every offensive comment under the sun that a simple, “What’s wrong with your kid?" wont phase them. Then the normal child would see that we should not be afraid of peers who are different and know that it’s okay to ask questions.