Temple Grandin Gives Me Hope

Seems like anytime I send for an old-fashioned DVD from Netflix, it then sits around our house for weeks and weeks before I ever get around to watching it, even if I was so excited to see it. Just another reason why instant streaming always wins in our house.
But I did finally dig the latest DVD out on Saturday night, and I sat down to watch the HBO movie, Temple Grandin. I roughly knew the story – a biopic about the life of a woman with autism who has gone on to do incredible things both in spite of and because of her different mind – and I was interested in learning more about Temple. I thought it might help me understand my own daughter a little bit more and maybe even help me feel more confident about her future. However, I wasn’t prepared for the emotional gut punch that came with the story.

If you have a child with autism, I highly recommend this movie. With tissues.

If you don’t have a child with autism, I also highly recommend this movie. Possibly with tissues.

The first part that brought tears to my eyes was near the beginning, in a flashback scene where her mother remembers when Temple was four years old and diagnosed with autism. Her mother asked how soon they could start treatment to cure her, and the doctor flatly told her that in these cases they recommended institutionalizing the child for life. Her mother’s reaction – one of confusion and horror – reached right out and grabbed my heart.

I’m thankful that research for autism has come so far since 1960. I can’t imagine being told my child would have no chance at a life outside of an institution. But I shared a similar reaction when the school told us they thought Cordy had autism. Oh sure, I put on a pretty brave stiff-upper-lip about the whole thing when it happened, but I can honestly say now that I was so very, very scared. In those first few days I was faced with an entirely different life plan for Cordy, one where I had to wonder if she’d ever be able to go to college, or have friends, or even live on her own. While it was a complete overreaction, for a short time autism felt like a death sentence for all of my hopes and dreams for my beautiful curly-headed firstborn.

Temple, despite being nonverbal at four years old, wasn’t put in an institution. Her mother worked with her daily, brought in others to teach her as well, and she eventually went to school, then to college, then to graduate school, and she now has her PhD. Her family didn’t give up on her, and they didn’t let her give up either. It was interesting to see how her family worked with her through her quirks and needs in high school and college, but at the same time they still insisted that some things must be done, no matter how difficult. I only wish the film had been longer to show more of how Temple was brought out of her shell as a child.

It was also painful to see how others treated and reacted to her. She was bullied, she was called a freak, and she was an easy target for others. I already know Cordy will face an onslaught of bullying in school, and I don’t know how to protect her. Thankfully she often doesn’t notice if someone teases her, but I know that kids don’t like to be ignored and will drive their point home if she misses it, physically if needed. She has such a gentle soul that believes everyone is good – how will I prepare for the day when that soul is crushed by cruelty and she realizes her rigid definition of humanity doesn’t fit?

The second time I cried was at the end, when Temple attended an autism conference and was asked to speak. Just the full realization that this woman – with autism – has led such a successful life overwhelmed me with happiness and hope. Her different way of thinking led her to design cattle pen systems that are considered some of the most humane ever invented, and over half of the feedlots and slaughterhouses in the US now use her designs.

She wouldn’t have been able to do it without being autistic and seeing the world the way she does. She’s published many articles and a few books on her work with animals, and she’s also written about what it’s like to have autism, how she overcame her challenges, and how she embraces her autism as a part of her. She meets nearly every definition of success.

I still have days when I look at Cordy and wonder what her life will be like. She’s come so incredibly far from that three year old who recited entire episodes of Dora but couldn’t carry on a simple conversation. The kid who had a 20 minute meltdown, trying to bash her head into the floor over and over, because her routine had changed, or the room was too loud, or she had touched fingerpaint.
She’s full of life, she’s outspoken (although she tends to talk way too much), and she’s smart. She still has no grasp of sarcasm, takes everything you say literally (never say you want to kill something in front of her), and is still bothered by certain sensory stimuli. Will she continue improving? Will she be successful?
I don’t know if she’ll go on to college, but I plan to do everything I can to get her ready for it if she wants to. Maybe even if she doesn’t want to – after all, Cordy needs a lot of pushing to face her fears and grow. If I didn’t force her to go outside of her comfort zone, she’d still be unable to deal with a loud room and still drinking only out of sippy cups. I feel like the bad guy when I make her do things she doesn’t want to do, but I really believe she has to conquer those fears if she’s going to realize her full potential.
I have yet to read any of Temple Grandin’s books, but I plan to add them to the top of my priority reading list. I want to know more about her experiences and how she felt about her family and teachers and how they challenged her. I want to better understand her in the hopes of better understanding my own daughter, and perhaps get some tips on how to better reach out to Cordy. I’m considering going to see Temple speak when she’s in Indianapolis in April, too.
So yeah, if you get the chance, add Temple Grandin to your Netflix queue or just buy it outright. And don’t wait as long as I did to watch it.

Full disclosure: Just because it needs to be said, no one contacted me asking me to review this film – I just wanted to watch it. Although the links above do contain my Amazon ID, meaning if you click on the link and buy the DVD, I get a few pennies in return.



Illness & Rare Moments of Clarity

When Cordy’s teacher called me on Friday to tell me that Cordy was complaining of a sore throat, I wasn’t convinced. Cordy had been practically vibrating around the living room that morning, excited about going sledding with her class. I figured she had simply burned out on excitement and was claiming a sore throat to be given the chance to rest after expending so much energy.

The teacher wasn’t convinced, either, as Cordy went from complaining about a sore throat to happily eating a snack. Cordy had no fever, so her teacher wasn’t inclined to send her home, and I agreed. Cordy had a great day and came home happy.

Saturday I was gone for most of the day visiting a friend, and when I left everything seemed fine. When I came home that night, I was given the report that Cordy had fallen asleep at the table in a restaurant for lunch, and then refused to eat anything for dinner that night. When I peeked in on her, she was curled up in bed with her PJs on and an adult-sized fleece jacket over it all.

It wasn’t until early Sunday morning that my fears were confirmed, when I heard a low moaning sound coming from her room. When I went in she was tossing back and forth in her bed, saying she hurt all over. She was hot to the touch, too. No doubt, she was sick.

Cordy has the strongest immune system I know. She’s only been sick a handful of times, often avoiding the common colds and stomach viruses that go around. While I’d like to claim credit for good parenting and teaching her about proper hygiene, I know that isn’t likely the reason – after all, she’s a 6 year old with a sensory fear of water. So when she’s sick, I get concerned.

She spent most of Sunday either on the couch or in her bed. All food was refused, but she did drink a little bit of juice for us. Medicine helped the fever for a little while, but it always came back quickly. I could only sit by her side and hold her hand, telling her to rest and that she would feel better soon.

The worst part was her realization that she was sick, and that sickness can lead to death. “Mommy, am I going to die from being sick? I don’t want to die, I want to live,” she cried to me at one point. I held her tight and assured her that she would be fine and that everyone gets sick sometimes.

But something else happens when Cordy gets sick – she also becomes amazingly clear-headed. Instead of the random thoughts that come out in a rapid-fire string of consciousness, she can hold long conversations and remain focused on the topic at hand. She doesn’t get easily upset over little things, and she doesn’t have the same low threshold for sensory overload. She’s quieter, more still, more deep in thought and more aware of everything around her.

I can’t describe it well, but it’s as if the fever somehow blocks her autism and lets the child that is tangled up in it shine through. And while I’m always concerned about her when she’s sick, I also took the time to marvel at how different she is during these moments.

By Monday morning she was still weak, but starting to feel better. And by Monday evening, the Cordy we know and love was asking to eat dinner.

I’d never wish for Cordy to be sick, but I’ll admit that when she is sick I do take advantage of those rare quiet moments with her, comforting her, holding her hand, stroking her hair, and remind myself how grateful I am for all that she is, whether sick or healthy.



Roller Coaster of Autism

Raising a daughter with autism is a lot like riding a roller coaster. One minute you’re climbing high, watching your child make huge gains and seeing nothing but the blue sky above you when it comes to success. Then the next minute you’re hurtling downwards, out of control as you watch the ground come at you quickly, closing your eyes to block out your fear of all that progress crashing down with you, but quietly wishing you’d hurry up and hit bottom already. Then suddenly you pull up again, grateful to be released from the free-fall, wondering if you can stomach the next curve.

The past few weeks have been rough for Cordy, and as a result rough for us as well. After coming off the high of finding out that our daughter is excelling in academics and hearing so much praise from her teachers, we’re seeing a totally different child at home.

It’s hard for me to put into words what’s different about her. She’s…moody. The slightest verbal correction sends her either into a fit about how she’ll never get to do [insert activity she was doing] ever again, or sometimes a panic attack that we’ll hit her or send her to jail for some minor offense. (For the record, we don’t hit her. Just wanted to make that clear up front.)

She’s always been someone who sees only black and white with most issues, but lately everything has been even blacker and whiter. There is only one way to do things, and you can’t tell her otherwise. Any change in direction and suddenly it’s like the world is splitting apart at the seams.

She’s stopped sleeping again. She goes to bed at her normal time, but when I leave for work I’ll often still hear her talking in her room. On nights when I’m home, I sometimes wake up at 2am or 3am and still hear her talking to herself in her room. And yet she still bounds out of her room at 6:15am. Occasionally she’ll crash hard in the middle of the day – about a month ago there was a tornado warning while she was at school, and apparently while they crouched in the school hallway, sirens blaring, she fell asleep. But there seems to be no pattern to her sleep cycles.

Cordy has also started destructive behaviors – she’s unraveling socks at an alarming rate now. She insists on wearing socks at all times, but she has been putting holes in at least a few every week, sometimes completely unraveling the sock down to the bottom of the cuff. She’s also scratching herself raw at times and picking at her lips, sometimes until they bleed.

What bothers me the most is that Cordy wants to be alone even more lately. She comes home from school and usually within the first 15 minutes, she’s either absorbed in an activity book, or she disappears to another room to “make up her stories.” She likes to create stories, but she insists on making them in private and then she doesn’t like to share them. If anyone should come into the room, she gets upset and demands they leave. Peeking in on her, I often find her pacing back and forth, flapping her hands and talking to herself, usually quoting lines from TV shows. This is often what she’s doing in the middle of the night, too.

Sometimes I get so frustrated that she won’t let me into her world. If I ask her how her day went at school, she responds, “Mom, I don’t want to talk. I just want to watch TV.” If I ask her how she’s feeling, she whines and tries to avoid me. When I ask her to tell me one of her stories, she tells me that she doesn’t like to tell them to anyone. I feel like I can’t get through to her, and I sometimes worry that feeling will create a divide between us. I know I shouldn’t take it personally, but when your 6 year old keeps telling you to leave her alone, and you go an entire night in different rooms, it starts to have an effect.

Many of these behaviors have been with her for some time, but over the past few weeks they’ve intensified to the point that sometimes she’s incredibly difficult to live with. I can’t pinpoint what’s causing these changes, either, which leaves me feeling helpless. It’s quite possible the overstimulation of the holidays is affecting her, but I don’t know how to tone it down any more to keep her happy. Something at school could be affecting her, too – she never seems as happy when she gets off the bus anymore.

I really had no point to this post. I just needed to get this off my chest and admit that while I love my daughter, I’m having a hard time dealing with her lately. She was so happy earlier this year and now I feel like she’s morphed into some sullen emo teenager who is angry that we never let her do what she wants and never leave her alone enough. I want my smiling little girl back (I have tears in my eyes as I write that because I know what a little ray of sunshine she has been) and I want her to be at least a little more interested in her family.

I understand social interaction is hard for Cordy – such is the nature of autism – but I refuse to let autism take her away from me. I’ve been crazy busy with work, but I’ll somehow find the time to do more for her if needed. But what is there to do? I have no idea what steps to take next.

Back to that roller coaster image, since I have no idea how to even end this stream of consciousness: my eyes are currently squeezed shut tight and I’m hoping this is just a small dip in the ride and soon we’ll be on that upward climb again. Because right now the ground is a little too close for my liking.



Finding the Right Fit

Earlier this week I sacrificed my morning sleep time for Cordy’s annual IEP meeting. (If you’re not a special-needs parent or don’t understand the letters, the link provides more info.) These meetings always stress me out. I trust her teachers to give accurate information on Cordy’s abilities, but I always worry that they’re not pushing her hard enough or we’re not pushing hard enough to get more services for her. But then I worry if I set up unrealistic expectations that Cordy will fail and suffer as a result.

So I always arrive at these meetings conflicted and nervous. Add in 20+ hours of no sleep (from working the night before) and I probably looked like a crack addict at this meeting.

It started with her teacher telling us that Cordy is incredibly smart. This was the running theme of the entire meeting, so get ready to hear it a lot in this post. She’s testing at a 1st grade level for reading and executing 2nd grade level reading work in the classroom. Her math skills are advanced. She’s getting individual instruction in her special-needs classroom and is attending a mainstream kindergarten classroom for a few hours at a time three days a week.

Social skills, of course, is where the problem lies. She can be disruptive and shriek or scream if she has to do something she doesn’t want to do. She has trouble transitioning from one activity to another. And she’s not very good at making friends – she sometimes gets confused and doesn’t know what to say when talking to other kids.

When it came to planning out academic goals, the teacher had none in mind because she’s already well beyond her kindergarten curriculum. I pointed out that if Cordy is doing so well, it’s my goal that she continue to be pushed academically – to stay ahead of the curve. If she has trouble socially, I’d rather her at least be advanced academically so she has something to keep her self-esteem up.

The mainstream kindergarten teacher came to the meeting as well, and told us that Cordy is doing great when she’s there. We knew this, though – Cordy always tells us how much she likes going to that room, and describes having good dreams at night of getting to visit that class.

Of course, one goal I wanted to see in her IEP was more mainstream time. They said they would work on that gradually, and committed to start including her in art class with the mainstream class. They’re also going to try letting her sit with the other kindergartners during lunch – this is a big deal because there are no adults sitting at the table, so she’d be on her own in an unstructured social minefield. I suggested that they arrange to let her sit next to one of the kids she knows, so at least she doesn’t feel surrounded by strangers.

Finally, the principal of the school joined us at the end of the meeting. She again told us how impressed they are with how smart Cordy is, and mentioned that they would like to explore the possibility of formally testing her for the gifted ed program. The challenge for this is that Cordy must test without any accommodations – no extra breaks, etc – or the scores won’t count. This is problematic because Cordy doesn’t have a lot of patience for being tested. She likes to do schoolwork, but she hates having to prove what she knows.

The principal said they could seek an exception to have independent testing done in place of the standardized testing. Then the testing could be done on her own time, in her own way, and with people she’s comfortable around.

It all sounded great, but then I asked what sort of programs they had for gifted students. (Assuming she tested into gifted, which is not a guarantee.) They told us that due to budget cuts and new state guidelines, they actually don’t have any gifted ed programs until fourth or fifth grade. What’s the point of rushing to get her tested then?

The only truly frustrating part of the meeting (other than my trying to stay awake) was the realization that even if she’s fully mainstreamed next year, they still aren’t sure what to do with her. Should she be in a mainstream first grade class, she’ll likely be ahead of the curriculum for reading and math. Keeping her in the class for these subjects would be letting her down academically, but sending her up a grade for these subjects might then introduce more problems with transitioning and new situations that could get her put back into a special-needs class.

There doesn’t seem to be an ideal situation. OK, well, I suppose there’s homeschooling or a private Montessori school, but those require either me to not work as much or us to make a lot more money, respectively. At the moment, both options are not available to us.

It probably wouldn’t upset me as much if I didn’t partially understand what Cordy is facing. I was never in a special-needs class, but I did test into gifted ed as a kid. I had to go up a grade level for reading class, and I hated feeling out of place with the older kids. In my own class, I was constantly bored and I had trouble connecting with my peers. The only time I ever enjoyed elementary school was the one day a week I got to spend in the gifted education class. I was in a much smaller class, I was challenged, and I genuinely liked the coursework and the other kids I was with. But that gifted ed program started in second grade, not fourth. If I had to wait until fourth grade, I might have been a lost cause by that point.

Part of going to school is learning to put up with other people and situations you don’t always like. But I can’t imagine that every kid felt the same as me in school, and I don’t want my daughter to go through that as well. If she’s as smart as they believe she is, she’s going to need a lot of support to stay challenged and interested in school. Aaron and I can provide some of that at home, but we can’t be at school with her every day.

So the meeting generally left me feeling even more uncertain about Cordy’s education. There’s a lot of good going on, and quite a lot of possibilities, but just like my daughter I want something a little more concrete. There are some good options, but if there’s an ideal option, I’m not seeing it at the moment.

To sum up: I’ve got a smart, socially-awkward little girl who doesn’t fit the system. I think we can all now agree that she is most certainly MY daughter.



Please Forgive The Bragging

I know it’s generally considered bad form to brag. And bragging about how your kid is a genius is probably near the top of the bragging no-no list, right up there with “I can lift way more weight than anyone in my gym” and “I had my baby in 45 minutes with no epidural and it didn’t hurt at all.”

So if you don’t want to read about how smart my kid is, I understand. But you’ll miss out on some Cordy art and a great story from her at the end of the post.

We received a call from Cordy’s teacher today. When she started the call with, “I wanted to see how things are going with Cordelia at home,” I immediately braced myself for the bad news of how she was misbehaving at school or some other unwelcome announcement. Calls home from school never end well.

Instead, she went on to tell me that they have completed all of the screening assessments on Cordy to know just where to begin with her, and she wanted us to know the full results.

According to the standardized test, Cordy reads at a second grade level. Second grade! Not only can she read at that level, but her comprehension of what she reads is equally impressive. I confessed that I had no idea she could read that well, but I credited a lot of it to the Columbus Metropolitan Library’s Summer Reading Club this summer, where she really took to the idea of reading every day.

Before that, she often treated reading like it was a forbidden activity, doing it quietly in a corner or in her room. When you asked her to read something to you, she protested and acted like she couldn’t read at all. She still refuses to read out loud, but her teacher has reached a compromise where Cordy reads at a whisper so she can still be evaluated.

Beyond reading and comprehension, she also knows most of her numbers and can handle basic addition and subtraction. Money is the one area she still fumbles with, but that will come with time. Still – addition AND subtraction!

(Have I mentioned that we’ve never really taught her much of this? She hates being taught and prefers to pick it up on her own.)

The teacher told us they were all so impressed with her abilities, remarking that she and the aides often forget that Cordy is only five years old and in kindergarten. She expects that if Cordy’s social skills can improve, she’ll be in a mainstream classroom full time next year, and also said it’s probable that Cordy will be given the educational label “twice exceptional” – special needs and gifted – which will also give her access to the gifted ed programs.

I wasn’t expecting so much praise over the phone. It’s obvious Cordy has charmed her new teacher and staff just like she charms everyone she meets. The kid has a talent for making everyone love her.

So yeah, I’m a wee bit proud of her today. My warrior princess continues to amaze me every day. So often I feel like I’m never doing enough for her, and there are many times when I feel like I just don’t know what to do with her. But she’s seemingly oblivious to my worries and shortcomings, learning and growing and doing it all her own unique way.

Speaking of her unique way, I promised some art and a story, didn’t I? To go along with today’s phone call, Cordy’s teacher sent home a few of the assignments Cordy has been working on in the past week. I had no idea she was writing full sentences now.

The cats are real pets. The bunny is Sammy, aka the GIANT stuffed Miffy doll that has been her best friend for over two years now.

(Translation: The boy is going down the slide. He is happy.)

And finally, the story. Cordy spends nearly every evening in the kitchen by herself (and she INSISTS on being ALONE!) “making up stories.” We hear her mumbling to herself as she paces and hops and flaps back and forth along the kitchen floor. When she goes to bed at night, too, she often stays up for hours making up more stories.

The few times I’ve convinced her to tell me one of her stories, I’ve been treated to an amazingly wild stream-of-consciousness story that usually involves characters from several different TV shows all together in one psychedelic Nick Jr. mash-up.

I begged her to let me record one of her stories today, and she grudgingly approved. It isn’t nearly as long or as detailed because she was nervous about the camera being on her (and I was trying to make it as inconspicuous as possible, hence the brilliant shaky-cam cinematography), but it’s a small glimpse of what goes on in that brilliant little mind of hers.

Our next blogger, perhaps?

Wonderpets Save the Train (from the Vampire) from Christina M on Vimeo.

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