Wednesday, September 26, 2012

"Utah!? Really?"

Day by day, I have found myself becoming increasingly anxious over Evies impending enrollment in kindergarten next fall. Why? Aside from the borderline disturbing treatment of a special child while chaperoning my sons field trip I saw from a school district employee, there is something in having a non verbal child away from you for a lengthy period of time that can be unsettling; especially one as cute as Evie.
(I am not being biased, she actually is pretty darn cute.) I would like to say, however, that although I have mentioned more than once abuses that occur in special ed classroom, I am in no way saying they are all evil and public school is horrible for special needs children. I am just saying that between my husband and I, we just are not too comfortable with the setup they have in our current school district and feel, for Evie, there has to be something better out there for her.

In a perfect world, she would be able to attend the special needs program at my other childrens charter school which we absolutely love and we wouldn't have to leave my parents whom my children have truly enjoyed being around now that we're closer.  However, on two occasions from two different staff members, I was told that not only are the children in their program verbal, they are also high functioning. You mention your daughter is non verbal autistic, my only guess is it's assumed she has many issues- go figure. What I have observed about Evie is if she were verbal or at the very least have some constant method of communication, she would be much higher functioning with some sensory issues.

She has shown over and over that she does understand everything, her responsiveness to her name has greatly improved as well as her eye contact and ability to stop at the end of the driveway or wait by the car if we're going somewhere. (Traits I may mention that really only began to develop after I began to treat her more like a "normal" kid.) She has also begun to feed herself with a spoon- something I never thought she would ever do and bring important things to you, such as the remote control.

I really believe as parents to special needs children, despite what experts may tell you, you are the only ones that know your child enough to really know their prognosis. Evie, like other children, has the potential to do great  things but unlike other children, she requires the right key to truly unleash it which would be finding a method of communication that works for her.

I came across an article yesterday regarding the Mariposa School in North Carolina while reading articles about teaching autistic children how to sign. Children who were previously thought to be nonverbal through intensive therapy and a supportive environment began to communicate over a short period of time. This great program whose methods include signing everything, the floortime method, and 1:1 intensive ratios costs at least $5,000 per month. Being in North Carolina, I knew this was out of the question (not to mention the 5K tuition) but I wondering if there was anything remotely like it here.

Thanks to my dear friend google, I found this handy look up site for a state by state listing of autism schools. Big surprise, none in Idaho, but there are three, THREE in Northern Utah- little over three hours away. Fortunately my husbands company has a plant twenty minutes away from one of them, not to mention there are loads more on call job opportunities for myself. The school itself is fairly new and the program looks promising thanks to their sliding scale tuition. Does this mean we're off to Utah, homeland of my ancestors?

No but it gives alot to mull over, the first being my parents. One of the major reasons why we moved here was to be closer, enabling them to have a good relationship with my children that consisted more than a twice a year visit at best. I briefly mentioned the slight possibility of moving to my mother this morning, although she wasn't upset, she wasn't happy to say the least. However, if we were to have the good fortune of securing a loan we could easily purchase a six bedroom home for not much which would not only give everyone their own room, but leave a spare one for company. Even still, I would miss them terribly and my son would miss being able to tinker frequently in his grandpas workshop.

The second reason why we relocated was for school. My husband has been going to our local two year college to get prerqs out of the way but at one point would need to transfer to a university which does not exist here so in essence, we would have had to relocate. There are quite a few Universities in the N Utah region so that wouldn't be an issue.

Third, my other children. One could argue it wouldn't be fair to up and move for the second time in what would be a little over three years at that point just for the sake of a better situation for my youngest.  I ran it by my oldest who, for the record, is exited at the prospect of being near a big city with actual mass transit again. My other two children love their school but they're honestly always up for an adventure. My other children have truly always been good when it came to Evie.

My final hesitation would be the simple fact that it is Utah. Although being so close to the mountains is beautiful, I've always been very self conscious of the visible tattoos on my arms which tends to have  the more sheltered Mormons assume the worst of me, and when it's known that I'm a very eccentric liberal, Lord help me. However, I don't think it would be much different than living here in that respect. I feel that if it were a smaller town like the one I'm in and just as isolating, then it wouldn't work. To be honest, as much as I like the idea of a farm with horses and goats, I am a city girl at heart and having a metropolis (even if it is Salt Lake City) within an hours drive would bevery freeing


Thursday, September 20, 2012

Here We Go Again

After a wait that has lasted all summer, Evie is going to finally have her vision checked tomorrow and here I sit, having massive flashbacks of hope, similar to her sedated hearing screen which inspired this bit of writing. I never would have thought that her vision was an issue, slightly impaired maybe but not horrible. Then I heard of this little girl who suffered developmental delays and was thought to be autistic. Turns out, she was just suffering from poor eyesight and has since become the youngest member of Mensa with an IQ of 135 after receiving the appropriate prescription for eyeglasses.

 I started to think about it and Evie does like to watch her Spongebob up close and if I am standing in a darkened hallway calling her name, she will look towards the sound of my voice but ultimately go the other way. However, if we go to a park she will immediately run to the play structure which leads me to believe she has some form of farsightedness. But again, I was searching for similar signs of deafness two years ago which brought me temporary comfort, thinking all my child needed was a cochlear implant.

Don't get me wrong, I am happy for little Emmelyn and her parents. I can't imagine the joy they must have felt to find out that not only all her daughter needed was some glasses, but that she has an insane IQ for a toddler. However it does give me that fateful sense of false hope, the second time, for tomorrow.

Thursday, August 16, 2012

Extraordinary


Extraordinary-a word not to be taken lightly. In fact, I don't recall ever using it in my entire life and yet it is a word that popped into my mind earlier this evening after putting Evie to bed.

Two months ago my oldest daughter came to me and respectfully requested her own room. At fourteen, it had been 12 years since she had her own room and, for the most part, had been a very good roommate to her siblings. She reminded me that as she is going into high school she felt the need to have her own space to focus on her studies, not to mention, the twin bed she shared with Evie had become increasingly cramped over the past couple of years.

The next day she moved out of that room and traded with my six-year-old who for the record has never slept through the night. Despite the fact she was ecstatic to finally have her own room, this situation did not sit well with Evie.

For the most part,  Evie has never had any sleep issues or disturbances that commonly plague autistic children aside from hating her room for the simple fact going into it meant bedtime. She would instantly become uncomfortable no matter what time of day if she were brought there. And although she really had no bedtime routine at that point, she was fairly consistent to fall asleep with a cup after a few minutes. My oldest had never reported any crying through the night and if Evie had ever woken up, she would snuggle in with her sister and fall back to sleep. Her sister, being as caring as she is with Evie, would make any necessary adjustments in her sleeping position to accommodate Evies comfort even if it meant a very sore back in the morning. Her brother, however, was not so accommodating.

It was clear halfway through the first week this arrangement wasn't going to work. My son would commonly wake up shortly after Evie was put to bed or Evie would wake up screaming as he, being the older brother, was resistant to change his sleeping position as they both like to sleep sprawled across any surface space of the mattress. Initially I tried to set up a good routine for Evie consisting of a bath followed by one episode of Spongebob when I would braid her hair and make every attempt to brush her teeth. I would then "read" her a very short story with the hope the routine would make for an easier time falling asleep. It seemed to have the opposite effect as the time from me tucking her in to her falling asleep was increasing every night. It became common for her to wake up around 11pm and stay up until 3 or 4 in the morning multiple nights per week. It was clear this situation was not working.

I soon approached my oldest, intending to ask her to switch back to the old room with the promise of a bigger bed as it was clear, Evie missed her sister. But something occurred to me. Something I try very hard not to think of. The future.

I pictured a much older Evie in some group home, never sleeping because she didn't have her older sister to sleep with. No. This situation was going to work.

My son kept his things in with Evie and began to sleep in his other sisters room (I'll spare you the drama). I continued the routine, despite Evies protests by running the other direction whenever I said, "Time for a tub" and screaming while I read "Goodnight Moon." But sure enough, after a few weeks the screaming stopped and I began catching her quickly glancing at the pages while I read. Now I'm happy to report, she'll lay on her back and playfully hide in the covers while I read to her most nights. It has been two weeks since she woke up during the night, which brings me to earlier this evening.

Tomorrow my oldest will be visiting family for a few days. We told Evie this a few times over the past few days but of course, she being who she is, went about her days with a business as usual attitude until tonight. After her bath, she willingly went into her room and ran over to the bed when she looked at me briefly and patted the spot next to her. I ran over to her and sat down, surprised as usually after getting pajamas on she quickly bolts out of the room. Evie began to giggle. Seeing this, my other daughter (Evies former roommate) was on my laptop in the same room at the time stopped what she was doing to go play peek-a-boo with Evie in the blankets. When one of us would get up to leave, Evie would quickly take our hand, lead us back to the bed, walk over to the door, promptly close it and return to the bed to play some more. This continued for well over thirty minutes.

I honestly wish I had the words to describe Evie when she giggles and gets excited. Her whole face seems to light up as she gets the biggest grin, puts her hands together then pulls them apart and does this funky thing with her arms that isn't unlike a chicken flapping its wings, all with that contagious giggle which is usually followed up with a kiss and one of the very few sounds she makes, "ummmmm."

One major thing I have learned with having a child on the spectrum is you truly know what it is like to appreciate and find joy in the little things. I can't imagine ever with my other children getting excited because they willingly went into their room. That was never an issue with them. Tonight was a breakthrough in the sense that Evie knew her older sister was leaving and she willingly played in her room with us. And that is extraordinary.

Thursday, June 28, 2012

My worst nightmare.


Yesterday afternoon shortly after we returned from the store, I was making my husband a sandwich to drop off at his work. Evie who loves to eat, continued to pull and my arms indicating she was still hungry even though she just barely ate. Realizing the sandwich I was making wasn't for her, she went out the back door. I heard her brother playing outside, talking with the neighbor kids and had just checked the back gate before left earlier and knew it was shut. Five minutes later I see one of my new young adult neighbors walk by my kitchen window in front and hear a woman say, "Is this where you live?" Just as I was about to reply, "no he's next door" (seriously), I see Evie holding the womans hand.

I immediately drop what I was doing, fly out the front door leaving it open, and run up to Evie who was smiling, clearly pleased with herself for making yet another successful escape. In the short time she was gone, she had walked down the street and decided to sit down in the middle of the crossroad. I curse the house we rent for not having a kitchen window overlooking the backyard and myself for not being more vigilant.  I am grateful, however,  the street our house is on is a drive that horseshoes against a slightly more busy street that runs along the back of two schools so through traffic is minimal.

I thank the woman and her son for bringing her home. I tell the neighbor she's autistic as I look at Evie's dirty tank top and barefeet, hoping she doesn't call CPS. Even if she did, oh well, my Evie's safe. I give Evie another hug as she tries to bite, giggling. The neighbor said she figured she had some form of Autism and was surprised that Evie let her carry her back home, I told her Evie likes to be held and again thanked her.

This morning I'm customizing an ID bracelet and buying a padlock for the back gate, grateful I still have four children.

Saturday, June 9, 2012

The Neverending Vat of Vomit

                
I have yet to find one of these cartoons that are closer to the truth. My three older children know that if they get sick, mom treats them first... unless of course they aren't breathing or bleeding severely from some appendage.  Being a nurse and having four children, I have a fairly good idea of what will happen to my child at the family clinic for various maladies ranging from earaches to vomiting and nothing ever freaks me out. Unless it's Evie.

Having a child that doesn't have a specific way of communicating puts quite the wrench into the mommy clinic operations. And to tell you the truth, it scares the crap out of me when she gets sick because of it. Perhaps its because I had to give her CPR last summer when her temperature spiked to 104. Her eyes rolled back and she went limp and blue a few minutes after I gave her Tylenol. She had never had febrile seizures before and never exhibited the classic tonic/clonic movements, which through my training through a loop. She has also gone from completely fine one minute, to vomiting and diarrhea to the next. I can't ask her if she ate something she shouldn't have or to point specifically to where it hurts which makes it very hard to assess how serious her illness is.

Wednesday night, I very suddenly came down with some stomach bug. I'll spare you the TMI details but needless to say, I was within five feet of the bathroom all night and I was having upper gastric pain 6 out of 10. (I honestly have a high pain tolerance.) I stayed on the couch the next day, sipped Gatorade and remained otherwise incapacitated. I finally ate some soup late that night which brought on the stomach cramps again, but on a much lesser scale. Today I was fine. Guess which child whatever bug I had decided to invade? Yup.

Two hours ago Evie had vomited everything from today. She didn't cry, wasn't upset, no fever but was laying in more of a fetal position. We quickly gave her a bath and brought her into bed. Typically she screams for a cup or something to drink before going back to bed but she's just been laying down. Basing on what I felt two nights ago I hope it will pass. She still has no fever but continues to dry heave every half hour since. Her lungs sound clear, her skin color is good, and when I start singing her favorite song, The Wheels On The Bus, she gives me a sheepish grin and rolls over. "Mom, knock it off. I feel like crap."

Thanks to my overactive imagination, I imagine she'll continue to dry heave,  in some way aspirate in the night, and I'll sleep through it. Or I'll wake up tomorrow and somehow she'll have regressed and not make any eye contact whatsoever. I worry that I'll have to take her to the Saturday clinic tomorrow where they will tell me to watch her output, begin with small amounts of clear liquids and slowly advance to bland foods.  Or worse, the Saturday clinic would already be filled and I'd have to take her to the ER. 

All I can do now is prop her head up the best I can and be ready with a washcloth.

Monday, May 14, 2012

"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.

Thursday, May 10, 2012

"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.

Thursday, May 3, 2012

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.

Thursday, March 22, 2012

Your kid is stupid

Anyone who as ever been to an IEP meeting you would know how frustrating it can be. These fun Individual Education Plan meetings can occur once or twice per year and involve you, your spouse (if applicable), your childs teacher and paraeducators such as occupational, speech, and physical therapists.

Don't get me wrong, I've been fortunate enough to have caring teachers in my daughters life however I've never come away from one of these meetings feeling positive of my daughters future. I've been told she has no object permanence, major step in child development which isn't true. Like most people, she could care less about things she's not interested in. Try to test her object permanence with a toy, she wouldn't have any. An electronic item such as an iTouch... now she's completely interested.

What brought me to write about this is what happened two days ago. At her last IEP meeting, her behavior on the developmental scale would be between nine and twelve months.  I'm watching TV, folding clothes when Evie is fussing and squawking because she's hungry. I tell her dinner is almost ready, we'll eat in a bit. She walks over to a floor lamp that was next to me and starts to take hold of it. I tell her "Evie, you need to wait for dinner I know you're hungry." After no waiting at all she goes upstairs when I hear a crash seconds later. I go up to find she went to the living room, directly to an even taller floor lamp we have and knocked it over. She stands there, looks at me, and walks into the kitchen. A bit smarter than a twelve year old in my opinion.

Wednesday, March 7, 2012

IBT


IBT or intensive behavior therapy... I honestly have no clue what it is but whenever I hear IBT, my nursing brain automatically thinks of IBS (irritable bowel syndrome.) I first heard mention of IBT from the director of a long-term documentary on Autism who asked us if we ever considered it for Evie. At the time, she was getting weekly occupational, speech,  and physical therapy with copays equaling $60 for the week. I know that doesn't sound like much but it really added up. At any rate, he highly reccommended we look into it when we had the chance.

Now that we live in the glorious state of Idaho and are on one income, Evie qualifies for Medicaid. She goes to speech therapy twice a week, and continues with her weekly occupational. Last month her speech therapist (who oddly enough married a girl I grew up with and is now cousins with my parents neighbors- small  world right?) suggested we look into behavior therapy. Despite the fact at her last IEP meeting her cognition was measured at 6 months, her therapist recognizes how smart she is. For instance, on numerous occasions she will fall asleep 20 minutes into a session only to miraculously wake up and want to get down when we exit the building. If this tactic doesn't work she will go to plan #2 which is to go #2. Seriously. She knows we forget the diaper bag.

Later today she has her first intake visit with a behavior therapist and I, despite my best intentions of finding out what it is, still have no clue what to expect and am trying (unsuccessfully) to rid my mind of the vision of Evie getting electroshock therapy. Wish us luck.

UPDATE: During her intake, it was determined that Evie doesn't qualify for Intensive Behavior Therapy as she doesn't exhibit any negative behaviors such as hitting her head against the wall, kicking or aggressive biting. She does qualify for developmental therapy. Main difference being education of the therapist. for IBT, you need a masters for DT it's more of a trade school type of training, which I'm okay with. We set some initial goals such as walking up steps with alternating feet, setting cup down on table when she's done (instead of chucking it across the room), and of course, improving communication. An Ipad was brought up but I'm still on the fence about using one. Part of me thinks it's a really good idea and she would take to it right away given her affinity for all things electronic and colorful, but the other part feels it may be more of a crutch. Who knows. For one thing, the social worker did say she was amazed at how mellow Evie is. She said typically children who are non verbal have several negative behaviors that take place of communication. During the intake, Evie did her usual escape attempt out the door, climbing over another desk and crawling under my chair. It was nice to hear something positive.

Tuesday, February 28, 2012

A cure?

There are controversies within the deaf community over cochlear implants. While many parents see this as a godsend for their deaf children, others within that community understandably see it as  a threat to their culture. Having a child who is on the autism spectrum, I wonder sometimes if there was suddenly a cure all, would I do it? If given the chance for my child to be "normal" whether it be through extensive surgery or expensive shots, would I? When I checked my email this morning, I was greeted with "New Autism Treatment." Oh really... I clicked to find information and the obligatory testimonial over a series of shots called  GcMAFWTF?

What I can gather from several websites translated by my rusty Biology, GcMAF is a protein that has been used in Europe to treat cancer and early stage HIV by initiating an immune response to pathogenic cells. It is currently in pre-clinical trials to treat autism and, surprise, is available for purchase over the Internet. Some even claim significant verbal improvement of their autistic children with shots over several weeks.  But at what cost?

I've come to learn that 'autism' is such a blanketed term for the unexplainable.  Some are overstimulated, bite, kick refuse any contact and others are like my Evie; they snuggle, burrow into small places, and are mute. She has only said "maa" four times in her life and just today said 'haa'. (Baby steps.)  I can't help but think there is no one cause for a disorder that is so varied in it's manifestations, and if there is no one cause there can't be one cure. I have to disagree with Dr. Broadstreet that autism is not a disease and as much as I would give anything to hear what Evie's favorite color is or what goes on in her little world, it's going to have to be on her terms, without any side effects.