"How To Deal"

So the following ditty came from a 15 minute free write from a creative writing course I took last fall. The prompt was write "How To..." instructions in the second person. Up to this point, I always hated the second person but after this I have to admit, I kinda like it. After a couple revisions and sharing it with three close friends, I had it ready to enter Writers Digests annual writing competition for personal essay. For just $30 you had the chance, albeit slim, of winning a trip to New York, lots of money and the personal attention of four editors. In addition to the grand prize, there were several lower prizes such as a years subscription to the magazine which I would have been more than happy with.

After multiple attempts to submit over the past few days, I finally gave up. For whatever reason, no matter what format I saved the file in, I continually received the message, "unknown file" or something like that. In my frustration I give you "How To Deal."

How To Deal by Isis Jones

It's 7 am, the bright red numerals of your clock shine in your face as your alarm goes off. You hit snooze. It's now 7:10am, your alarm goes off. Again you hit snooze. Finally at 7:20 you turn off the alarm. You roll on your back, take a breath. Today is the day you hope to find that your daughter is deaf.

As you sit on the edge of your bed, you try to calculate how much sleep you had last night. Last time you saw the clock it was 3:54 am, and your daughter was still screaming. It began at midnight. You just barely finished your shift at work, and unwound by taking a shower and having a cup of chamomile. You barely set your head on the pillow and closed your eyes when you hear the initial sounds of her moaning over the monitor. You tell yourself she'll fall back asleep. You close your eyes again... relax. You’re imagining all the issues from work drifting away and look forward to the temporary escape your dreams will bring. The screaming begins.

You remind yourself it's common for three-year-olds to get nightmares. You reluctantly throw off your covers and slowly creep open her door. "Shhhhh" you whisper, "mommy's here." Only your three year old can't tell you what's wrong. She doesn't respond to the reassuring touches to her face or the gentle way you rub her back. You expect this. Your daughter has autism. She has never said a word, not a syllable. Due to her sensory issues, she can't touch pictures to show you what she needs and she lacks the fine motor skills required for sign language.

Using Maslows bullshit hierarchy of needs as a guide, you change her diaper, get her a cup, check her temperature, take a look at her skin to make sure she didn't get bit by a spider or some other insect, yet the screaming continues. You watch helplessly as her eyes dart around the room at the imaginary terrors only she can see. You catch yourself beginning to cry, only you know she needs you to be strong. You know that it wont help to cry. It's a waste. You try to snuggle with her, and she pushes you away. You look at the clock. It's been almost an hour. Somehow you drift in and out of sleep. You look at her clock. It's 2:30. Again you check her diaper. It's dry. Her screams have subsided a bit giving way to the moaning. You close your eyes. Again, she screams. You look at the clock. It's almost 3:30. You give her kiss, smooth her long curls out of her face, double, then triple check there is nothing she can get hurt with and go to your room to try to sleep closing the door on your way out. You feel selfish, you try to remind yourself in order to take care of others, you have to look after yourself. As you turn down her monitor, you reflect on the countless neurology and genetic appointments she's been to.

You remember people asking if she responded to her name. "Sometimes". They order a hearing test. You think how pointless it would be for her to have a behavioral hearing test with that stupid monkey in the box and how you told the experts she wont respond. She's never responded to toys. But still you go through the motions. Six months and two tests later the "experts" tell you the tests were inconclusive and they would like her to have a sedated hearing test. Resisting the urge to say I told you so, you agree. Tomorrow she has her test, you have to be at the hospital at 8:30 and you have to sleep.

You get up from your bed and briefly stretch. You forgo the shower, dress quickly then go to your daughters closed door. The image of her dead body briefly crosses your mind as you slowly open it. She pokes her head up and greets you with rocking back and forth, smiling at the floor. You know she's happy to see you. Whatever terrors were in her room are gone. While you get her dressed you wonder if you're a bad parent, hoping your child has a hearing loss. You think of those youtube clips of babies smiling upon hearing their mothers voice for the first time after a hearing aid or cochlear implant is placed. The same babies who undoubtedly have a greater chance at speaking and responding to the world around them. You feed your daughter breakfast, wash her face, and put in an episode of SpongeBob.

You hate SpongeBob. You hate how easily he can make your daughter smile. You hate how long she stares at him with that precious eye contact you receive so little of, giggling at whatever stupid thing he’s doing. You quickly do her hair while she's in her happy place with SpongeBob. You finish getting her dressed and into her carseat.

You get on the freeway. Your daughter loves to go fast. She rocks back and forth happily, kicking her feet. You look back in the rearview mirror and imagine her looking at directly at you and saying "Mommy I want to go fast!" You then push the image of Ricky Bobby out of your head and watch the road. You arrive at the hospital and try to have her walk with you, holding your hand. But something catches her eye and she drops to the ground in silent protest of going where you want her to go. You're forced to pick her up, suddenly reminded of how little sleep you got last night. You check in and sit down in the waiting area decorated in an underwater theme. There is a giant Native American fish that hangs from the atrium three stories above. You hate that fish. It's probably a whale but you don't care. You're in a hospital and your daughter is trying to squeeze herself in between a stranger and the back of his chair in a desperate attempt to get some additional stimulation to her nervous system. You quickly go over, apologetically say "Sorry, she's autistic" and find some corner to try and hide in. The nurse calls her name. Again, she refuses to walk. You're lead back through a sterile hallway adorned with a colorful train filled with generic zoo animals. I bet I can paint something better than that,  you think inadvertently reminding yourself that you chose to be practical and become a nurse; a guaranteed paycheck over creative fulfillment.

You're led back to an even more sterile room where you will change your daughter into a gown with covered with condescending cartoon animals. The nurse closes the door. Your daughter doesn't like closed doors or small rooms. She screams and begins to fight. You know she wants her cup but she can't have fluids because of anesthesia. Maybe it's good she's screaming. Maybe the audiologist will come faster. They don't. Quickly you turn on the TV and hope that damned animated yellow square is on. You're in luck. Once again you curse the name Spongebob as she immediately calms down at the sight of him. Finally you are led back by the nurse to the room where they will put electrodes on her head and foam headphones over her ears to measure her brains response to sound.

You're briefly introduced to all the members of the medical team and are told what to expect as you watch your child go to an anesthesia induced sleep. You're told to hold the mask to her face where she will undoubtedly resist, begin to snort and see her eyes roll back to her head and go limp. You're asked if you'll be able to handle it. "I think I'll be okay." She begins to fight as you keep her restrained, holding her body against yours with one arm and keeping the mask over her face with the other. You glance up to the medical team who watch you intently. You forget their names as you witness your daughter do exactly what they said. She snorts as she inhales, eyes roll back, body goes limp. You wait with the hope they'll allow you to hold her a few moments. You pretend she just fell asleep while watching some stupid Disney cartoon with one of those pimped out princesses after a night of playing dress up, painting each others nails. But they quickly take her and lay her out gently on the table and just like that, you're dismissed.

You're led back to the waiting room with that stupid whale hovering, while holding the clothes your daughter wore that day. You're exhausted. You forgot to eat. You make a pathetic attempt at getting comfortable in the stiff backed vinyl chair. It's 10:00. You close your eyes. You see your daughter on some Youtube clip-Three Year Old Hears Mothers Voice For First Time. 1,582,468 hits. You're in the same room her behavioral hearing test was in. The over-the-ear hearing aid goes in both ears. The audiologist turns them on. "Hello love" you say. A long pause. Your daughters eyes light up "mommy?" Tears are shed. You give her a hug. Those pieces of plastic magically bring your daughter out from whatever other world she's in. All is right in the world.

You startle awake from someone suddenly touching your shoulder. Imagining some strange person, you open your eyes to see the audiologist looking at you. You look at your watch it's almost 10:45. You quickly apologize, mutter something about lack of sleep. "Is she done?" you ask. "Yes. I have great news- her hearing is just fine."

You pause. "That's good... great news" you say as you're once again led down the sterile hall passing the crappy cartoon train as you go back to your daughter.

"School is the devil!"

When you go to an open forum support group I'm sure you can imagine how topics can vary far and wide. What really hit home last month, aside from the toilet training, was school. From what I've seen you either have parents that fully support their children no matter how atypical going to a regular school even if they may not be in a regular classroom, or you have the anti establishment I-know-what's-best-for-my-child homeschooling parents. (Betcha can't guess which one I am...)

So at this meeting the wonder mom with two autistic children (I'm not being sarcastic anyone who can successfully toilet train a non verbal autistic is a wondermom in my opinion) said she was all for her children going to school. The older one needed barely any help in a typical classroom, the other was still with an autism class and went with the typical children during music, recess, and library. I can see how parents would appreciate their children getting some time in with the "normal" children with the help of a paraeducator. When I expressed concerns at one of Evie's IEP meetings about what happens when she'll go into kindergarten, I was reassured that the school district had excellent ones, the ratios were really good and that isn't something I should worry about. Haha.

Last fall my fourteen year old told me in her home ec class there were two special needs teens with a paraeducator. A paraeducator who when my daughter was helping one of the teens cut her pattern was told, "Don't help her. Let her mess with it, it keeps her busy." The same paraeducator who would instead of assisting the teens develop life skills or somehow tailor the project to the teens level would chit-chat with the home ec teacher leaving my daughter to help the teens. Which she didn't mind at all. Having a special needs little sister will do that to you. 

I expressed my sentiment towards the school districts take on assimilation vs separation during the group and ultimately this mom and I agreed to disagree. She did end her statement with, "But you do need time for you." Which is true. I'm sure my opinions on the subject would be greatly different if Evie had behavioral problems, but aside from consistently chucking her cup and biting when I'm trying to get something done and not paying her attention she's better behaved than most four year olds. Ultimately at that point, I decided to leave an open mind until closer to her due date for kindergarten.

Fast forward to today. I chaperoned my sons kindergarten class to a nearby nursery to look at how plants are grown. I was sitting around the table savoring the joy that only being around six year olds can bring when it was time to leave and I saw her. Standing with an older lady by the door, another kindergartener who I believe had a type of achondroplasia and judging by her neumerous ticks, a form of autism or other disorder. She also happened to have similar color eyes and hair to my Evie. I wanted to give her a hug. 

The woman, who I assume was her paraeducator for the trip, held her hand and stood by the door. As the 30+kindergarteners were leaving walking by her, no one said hi including my son-but he was too busy play punching his assigned buddy. I said hi and gave her a little wave. I was inline for the bus when I felt a tug at my purse strap that was crosswise over my body, I turned and saw the little girl giving it a tug like Evie does complete with incoherent vocal noises. I was about to say something to  her when I heard, "NO! Stop it!" coming from her adult buddy. I quickly said it's fine, I have a special needs child at home and I was told this little girl needed to learn to keep her hands to herself. Which ultimately is true but even dogs are taught with positive reinforcement. My son then decided to tell me she was different. I said, "Just like Evie." He then looked at me, turned to her, gave a little wave and simply said "hi" before walking to his seat. 

Onto the bus. I sat with the punching buddies to my left and the little girl with her buddy to my right. The buddy pulls out her cell phone to text when of course the girl goes to grab it, again, "NO! Don't touch!" Strike two. One more time and I'm saying something. As much as I would have liked to say something in the moment, I've learned the hard way it's best to wait. So I give her another chance before I say something. Besides, compared with this situation or this, this woman is really nothing. 

So I watch. I see the paraeducator relax and eventually give the little girl hugs and make sure her coat and hat was on as it was quite windy and cold and decide that ultimately it wasn't so bad. Until it was time for a group kindergarten photo. The woman pulls the little girl away to make sure she wasn't in it. I felt horrible. Did I say anything? No. I was too afraid of coming off as a bitch which could have been a good thing I guess. Like I said, it's something I'm working on. 

Yes, at this point, my daughter will be staying home. I don't need her to assimilate into some classroom if she can't yet help herself to the bathroom or communicate her needs. I don't need her to be "that kid" that children only see during specialists and lurk in the background during field trips. She hasn't shown any desire to join other children aside from her siblings so I'm not concerned with her socializing. Personally, I hate talking directly to people that's why I go on facebook so much.  If in two years she's gotten to the point where she can be in a regular classroom and learn, great so be it. But if not, we'll have our own adventures at home. I just hope it wont be too much of a battle to get her there. That's just something I'll need to look into. 

Progress

No, not in potty training although I have been taking her fairly regularly. That day however, I took her to the bathroom where she sat happily for a few moments, stood up, then proceeded to pee on my leg. She may not be ready but hey, she's sitting on the toilet without screaming. That's always a good sign right?

She plays this game fairly frequently during her speech therapy sessions where she'll look up at my glasses then attempt to rip them off my face, giggling where if she's successful, she'll throw them across the room. When she tried this at her most recent session, I quickly grabbed my sunglasses and put them over my regular glasses. This new change threw her off. She got this big smile on her face, took the sunglasses off my face and instead of throwing them, she held them up to her own face. I quickly took this cue and put them on her where I had expected she would take and chuck them across the room. But no, she looked up at me and she giggled!

When she reached up to take them off her face she actually handed them to me. This is a major step for not only communication but play as well. I took the glasses and put them on myself where we continued to take turns, passing my sunglasses back and forth for five minutes! It was amazing. But unfortunately for her, I now know she doesn't have some internal need to throw things. She is capable of handing objects to people or putting them back on a surface. I think this is, once again, a case where I've underestimated my daughter.

Potty training

It's been almost a year since we relocated from the Seattle area to an isolated town with only 44,000 people. Why? Long story. At any rate, despite the really crappy radio stations and almost near constant stench of dairy farms, everything is within ten minutes. Back home in order to get to some type of support group you'd have to travel quite a bit and that's IF it's held on a day your available AND you have a babysitter. Between work schedules and clashing siblings, we were never able to go.

Fortunately there's an autism support group that meets monthly only three minutes away so we can leave our oldest to babysit and come home very quickly if something happens. Halfway into the first 90 minute meeting we went to I got a phone call from my ten-year-old saying my thirteen-year-old was in the backyard burning candles or something. Of course by the time we got home, no one knew anything.

At the last support meeting, there was a mom there who has two children ages nine and seven with varying stages of autism, both potty trained. The youngest was non verbal at the time. I was amazed. All the literature I've read out there highly recommends waiting until your child can at least pull down their own pants. This mom said that all she did was consistently put her kid on the toilet, as in every fifteen minutes.

I'm realistic. I don't have that kind of time, in fact, I only wear a watch at work. Regardless I'll try it. Evie is in size six diapers and they're starting to get a bit snug. I know she recognizes when she's about to pee as she has this uncanny ability to do it right when I take off her diaper and conveniently pauses beforehand- unless I put her on the pot. Then she kinda giggles, makes her hissing noise then moves to get off. At least she's sitting on it right?

Starting today, on my days off I'm going to start changing her diapers in the bathroom and putting her on the toilet every hour. If no success, I'll move the intervals closer together. Wish me luck.