- It's not morning yet. Go back to bed.
- Did you change your underwear? We change our underwear every morning.
- Hands out of your pants.
- We don't hurt the cat.
- Quiet voice. No yelling.
- Don't lick the window.
- Get off the couch like that.
- He's making a hurt noise. Let him go.
- Yelling hurts my ears. Quiet voice.
- You're right. I'm trying to ruin your life.
- Do you have to pee? Then don't grab that.
- Stop licking the mirror.
- Keep your spit in your mouth.
- Did you remember to wipe? Go fix that.
- Stop torturing the cat.
- Jump on the trampoline, not my couch.
- I know, I am the meanest mom ever. Now do your homework.
- Let go of your sister. You're choking her.
- Stop kicking your brother.
- I'm gonna lock you both in your rooms if you don't stop it now.
- Don't wipe your nose on me, use a kleenex!
- Plates aren't garbage. Take it out of the garbage please.
- Eww! Did you just lick me?
- Get off of her!
- Do your homework.
- Clean your room. No, it's not my room, I won't clean it for you.
- I don't care if you like it messy.
- Because I said so.
- I didn't ask you what you want to do.
- Is it bedtime yet?
Things I Have Said Today
We're coming up on the two-year mark of our journey into Autism. In 2009, two very nervous and exhausted parents met with a highly-recommended developmental neuropsychologist to discuss the strange behaviors and developmental delays in their four year old child. We were concerned and scared and tired of feeling out of control in our own home. We were mentally and physically exhausted with the daily stress of meltdowns between every moment of endless movement and energy. We were troubled because we couldn't communicate with our son when he was out of control (which was much of the time) and because we didn't feel like we could connect with him when he was calm. And--having finally let go of that thin thought that he would grow out of these behaviors--we were holding on to the last thread of hope that maybe, just maybe, this would be the person who would finally see the things we were seeing in him and offer us some help.
And we were not let down in that regard. Hours and hours of evaluations stretched over the next weeks led to a label and a reason for his behaviors. And lots of suggestions on how to help him, and how to help ourselves as well.
But I've never been completely comfortable with the diagnosis. When we first started this process, I researched my little heart out. Every waking moment during the weeks of testing was spent on the computer or in the library, trying to prepare myself for whatever the doctor was going to say. When we went into her office for that fateful meeting where she was going to tell us the diagnosis, I was pretty sure I was one step ahead of her and knew what she was going to say. I had already self-diagnosed my boy with Sensory Processing Disorder. When she started talking about his global delays (meaning, delays across many areas of development) with huge delays in social and communication skills, warning bells went off in my head. These were not delays I had read about in conjunction with SPD! After 20 minutes of telling us the results of his tests and what the different therapists on her team had observed, we finally got that label...PDD-nos. And I drew a blank. Nothing in my research had mentioned this! It was several minutes of stunned processing on my part, trying to still my beating heart and the noise in my head to hear what she was still saying, when the word "autism" broke through. I remember saying, "Wait! He has autism?" And she explained about the spectrum being like a bowl, with some people being at the top of the bowl on one side (low-functioning, or Classic Autism) and some being at the top of the bowl on the other side (Aspergers Syndrome), and Munchkin falling into that large area in the middle of that bowl that they called PDD-nos, meaning he had "Global Developmental Delays with Autistic Characteristics."
We went home and I immediately got back on the computer to research this. As I read about the signs of autism, I realized with a sinking feeling that Munchkin really did display a lot of these things. He avoided eye contact with others. He often went into his own world and ignored everything around him. He didn't play with toys appropriately, but preferred to line them up or to lay on the floor and move his trains back and forth in front of his face. He obsessed about things to the point that nothing else mattered. He would play alongside other kids but seemed oblivious to their presence, unless they interrupted his process--then he melted down or lashed out aggressively. But for all the red flags he DID display, there were just as many that he DIDN'T. He didn't flap his hands, or spin the wheels on his tractors, or stare at patterns and designs on things, or rock his body back and forth. He didn't have speech delays, and talked a mile a minute! He made eye contact with me and with his teacher at school. He was affectionate, almost to a fault with the way he lunged his body at you for a hug and squeezed the air out of you. And he was smart--practically a genius! How could anything be wrong with the brain of a child who could recognize all his letters and numbers at 15 months and spell and read many words by age 2?!
But over time, the autistic behaviors became more apparent. He didn't flap his hands, but he did spin in circles a lot. Ok, too much to be considered normal. He talked a mile a minute, but always about Thomas the Tank Engine. In fact, he knew everything about Thomas, had even memorized whole episodes of the show! And he didn't always respond to your questions, or maybe if he did, his answer didn't make sense. Like when I asked him what he wanted to eat, and he said, "Ummm...blue?" But when I asked again, "Do you want waffles or cereal?" he said "waffles" (which, coincidentally perhaps, were in a blue box). He made eye contact when he initiated it, but refused to do so when you asked him too. He did have a fascination for patterns, always watching the way the sun played across the wall, or driving his trains on the lines of the tile floor, or having to avoid the lines in the tile at school and jump from square to square. And my little genius (for he truly was incredibly smart in many areas, testing at a 7- and 8- year old level in many higher functioning areas of the brain, like puzzle-solving and reasoning) couldn't do such basic tasks as getting himself dressed or holding a crayon to scribble. Over time, I embraced his diagnosis and we began working with therapists and with the school district to help him overcome his delays.
There is no longer any question in my mind that my child has "autistic-like" qualities. Here we are two years later, and he still displays many of them, though he has overcome many of them as well. He now makes eye contact in a fairly typical way--unless he's distressed or overwhelmed in some way, in which case he avoids it still. He still spins--a lot more than what would be considered typical, especially now that he's six--and he's actually picked up the habit of soothing himself by rocking. He still lags a year or two behind his peers in social development. He will play with other children now, and sometimes he even initiates it, but he doesn't have the skills that most six-year-olds have in play. He doesn't take turns, or let others lead the activity, or allow for any variation from the rules as he understands them. This makes it hard for him to join others in a game, because they get mad at him for being so rigid and for not playing fair. And he doesn't have a clue why they're upset, so he just thinks they're being mean to him. He still doesn't understand emotions or read facial cues well, but he has started making and understanding jokes in his own way. He doesn't understand sarcasm or some of the strange idioms in our language, and he's still a very literal and visual thinker. And he still obsesses about Thomas--though he's branched off now to Angry Birds and Hotwheels as well.
I no longer wonder if he's really autistic. I still maintain, though, that many of his issues are more sensory-related--which definitely falls into the spectrum, but doesn't define it. Almost all the things he does can be explained with an SPD diagnosis--but all of them can be explained by autism too. Ultimately, it doesn't matter. Having an autism diagnosis allows him to receive services through the school district, which, at this time in our life, is the only therapy we can afford to give him. It also allows insurance to cover at least some of his therapies when we do pick them up again, because they'll allow for Occupational and Speech Therapy under the autism category, but they won't even recognize SPD.
I do wonder where we'll be next year, when he'll have to be reevaluated in order to continue services at school. Will he still be "Autistic-Like" enough to qualify? Will he keep his diagnosis or will it change? Will he ever reach a point where he can be considered "neurotypical" and we no longer deal with this? I wonder this one a lot--I've accepted that this is our son's life, that he will always have Autism and will always be working at the things that his brain doesn't want to do. But I wonder sometimes if a day will come when his delays will be gone and his development will catch up to his peers. It's a possibility that I don't put my hope in for fear of disappointment if I do, but also one that I can't quite give up on.
Like I said: Ultimately, it doesn't matter. Munchkin is who he is, regardless of what we label it. The label doesn't define him--he defines it. Him, and all the other kids out there who are on the Spectrum, wherever they lie in that bowl.
Parent-Teacher Conferences. Does the term stir up dread in you? Or is it something you look forward to?
I remember these days as a kid. A day off of school. Waiting all morning with a mix of excitement and dread for it to be time to go to the school. Sitting in a chair in the hallway with my siblings while mom talked to each of our teachers, one at a time. I'd sit there with butterflies in my stomach, swinging my legs against the metal folding chair and wringing my hands in nervous anticipation of what was being said in that room. I was never too worried--I aced every test, answered all the questions correctly, handed in my homework on time, and raised my hand to talk in class. I was quiet and calm when I needed to be, smart and articulate when the situation called for that, and stayed out of trouble. But you never knew what the teacher was going to throw out there that might not be taken so well by the parents! I'd sit in that hallway reliving every moment of the last quarter, wondering if each little incident might have been one that would get me in trouble, until Mom finally walked out with a smile on her face and I knew I could relax. Yeah, I was a pretty good kid. I didn't ever have anything to worry about, but I worried all the same--guess I've always been that way.
Now I sit in the parent's seat at these conferences. And I enter them with the same mixture of excitement and dread. I can't wait to hear what level Munchkin's reading at, or what a magnificent writer Squirrel is. I love hearing which subjects are their strongest ones, and which ones really give them a creative outlet. Like myself at that age, Squirrel doesn't give me much to worry about. She's intelligent and articulate and creative. She aces her tests and answers all her school work correctly. This is Munchkin's first graded year of school, but he's following in his sister's footsteps--every test paper he's brought home so far this year has a big red A+ on it. Yes, I'm a proud momma. And no, I don't worry about their academic performance at all.
So what do I dread about conferences? For some people, it's the unknown--not knowing what the teacher might throw out there as a problem or concern. For me, though, it's a combination of the unknown and the known. I KNOW what problems will be thrown on the table for both my children. What I don't know is what new way this is manifesting itself in now?
Squirrel's fabulous school lets me come in and visit anytime. I speak to the teacher several times a week at pick-up time, and I am welcome to stop in and see her any morning before school if I have a question or concern. So anything that's going to come up at a conference has already been addressed. There probably won't be any surprises there--but you never know for sure!
Now, Munchkin's school is another story. In writing, they say they welcome visitors. In reality, you must sign your life away to step past the office! I've been to his classroom exactly one time during the school day since he started there last year--and that was because I insisted on walking him to class one day after a very rough and late start to our day. So I don't know what goes on in his school. What I do know is that Munchkin brings home a Behavior Book everyday, where the teacher lets me know what "color card" he was on (the cards are coded for behaviors). He's been on red or black (the lowest colors) a lot this year, so I know his behavior is far from perfect. But finding out why has been quite an ordeal! What he tells me rarely matches what the teacher tells me, but I'm starting to get a clearer picture of how his explanations of the scenarios leading up to a red card actually mesh with the teacher's explanations. And what it basically boils down to is sensory overload that is not being met--which means, his IEP is not being followed.
I am prepared for Parent-Teacher conferences today, though. I have a notebook full of articles and checklists on Sensory Needs and how to meet these needs in the classroom. I've highlighted ideas that address Munchkin's specific needs as I know them to be. I just found an excellent book on this too, which I printed the title and author of and will be giving to the teacher as a recommendation for her to use in the classroom. Will I offend his teachers? Possibly, though that's certainly not my intention. My intention is to help my Munchkin succeed in school, and his "behavior" seems to be holding him back from that success.
So, yeah, I'm going to Parent-Teacher conferences this afternoon with a combination of eager anticipation for the glowing academic reports, almost overshadowed by fear and dread of the unknown and known social and behavior reports. Wonder if all parents feel this way today, or if it's just those of us with special kids? I'm guessing we all do!
Some things in life take your breath away. Not in a beautiful, breath-taking way, though life is full of those too. More like a punched-in-the-stomach-and-now-I-can't-breath kind of way.
The phone call that someone I love had tried to kill himself.
The death of my grandpa and the loss of my one-man cheering squad.
Those horrid words: "I never loved you" and "I want a divorce."
Driving away from the life I'd tried so hard to create, with everything I owned in a borrowed pick-up truck.
The loss of the baby I didn't even know I wanted until it was gone.
The news that the baby girl I was carrying was in danger, and the not-knowing for the next three months.
My newborn daughter being whisked off to the NICU when she stopped breathing just hours after her birth.
The loss of another baby, one we really did want, and the medical treatments that made it impossible to try again for a year.
The foreclosure notice delivered by the man with pity in his eyes.
The news of impending unemployment for the winter months to come.
Hearing "You're son has autism."
Followed a year later by, "You're daughter is dangerously depressed."
Sometimes it feels like you've been punched so many times that the next blow will make it impossible to get back up. But we always do get back on our feet. My husband and I, we are strong. We've been through all but those first two together. He helped me stand strong through my divorce from my first husband, and he has been my friend and partner through all that has followed.
And between the punches, life actually does allow you time to recover. You get up, learn to breathe again, and become better for the lessons the fight has taught you. We've had periods of grace, goodness, and peace in between the pain. God has held our hands through it all, and proven that, though He might let us fall, He'll carry us until we can walk on our own two feet again.
But now life is throwing its punches at us again. There are a lot of unknowns right now. We're tense; ready for a fight. We're waiting anxiously for the punch that will take our breath away again, and praying it doesn't come, and hoping nothing is waiting in the shadows that we don't even know about to sucker-punch us while we're distracted. I wish I could say it's easy, trusting as we do that God will meet our needs. But, for me at least, it's hard. I don't want to be punched again. I don't want to feel like I can't catch my breath, like the very air around me is so heavy it might crush me. I'm tired, and anxious, and slightly sick waiting for whatever will happen to just happen already.
Sometimes, waiting for the punch is harder than the sneak attack.
Can you hear when we call
There where we fall
Standing our backs against the wall
Top of our lungs
How far we've come
Where pain and love bleed into one
All that we need
It's so bittersweet
The pain that opens our eyes to see
Baby when all you see is darkness
Coming down now
We all need forgiveness
Coming round now
Posted by Ellie at 6:37 PM
I'm a mom, a wife, a teacher, and a special needs advocate trying to make the most of every moment I'm given on this journey called life. I'm married to a funny and easy-going man, who balances out my anxiety and sarcasm perfectly. We have two very special children, who also happen to have some "special" needs. "Squirrel" is our 9 year old daughter. She is artistic, creative, and spirited. She lives with Sensory Processing Disorder, ADHD, and Anxiety. "Munchkin" is our 5 1/2 year old son. He is hilarious, sweet, and cuddly. He lives with an Autism Spectrum Disorder known as PDD-nos. Together, we're on a journey to see the hand of God through the joys, the struggles, the sadnesses, and the discoveries of living