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Mar 21, 2011

Temple Grandin Gives Me Hope

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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.

Filed Under: Autism, being a mom, Cordy, reviews ·


Mar 15, 2011

What I Learned At A Lady Gaga Concert

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1. I’m old.

2. Because I’m old, I was only a little sad that I didn’t splurge on the standing-room-only floor tickets. When there was a 90 minute intermission between the opening act and the appearance of the Mother Monster, my feet and lower back appreciated my little seat. And the cup holder for my drink.

3. I’m not so old that I feel concerts are too loud. Sure, it was loud, but that’s exactly what I wanted.

4. I am old enough, however, to appreciate the role of Madonna in getting Lady Gaga to where she is today. Yes, Gaga has a great message of unity and accepting yourself, but you know Madge went there first. The torch has been passed and in its passing has been made brighter and stronger, but I remember when Madonna was first running with it.

5. It’s a lot harder to get out of your row to go to the bathroom when you have to step over the girl in a blue corset top and fishnet stockings who is already passed out in her seat from too much alcohol. And the opening act just finished.

6. I was severely under-dressed. I somehow missed the memo that this was a costume ball. The younger folks, however, did get the memo.

7. What I may lack in youth and beauty, I make up for in experience, wisdom and knowing how to dress for my body type.

8. Some people shouldn’t be allowed to wear spandex. Or fishnets. Or duct tape. Don’t they have friends?

9. Governors should not be allowed to attend Lady Gaga concerts. Because no matter how badass and free you feel at the concert, you lose some of that when you look over and see Governor Kasich sitting in section 205. It kinda felt like having your dad watching you at the concert.

10. But then I realize, hey, at least I’m not as old as him.

11. And I thank all that is mighty that he didn’t dress as a Little Monster. In spandex.

12. I apologize for planting that last image in your head.

13. I miss going to concerts. Aaron and I had a great time, and for 2+ hours I forgot about all of my responsibilities. (Other than remembering I had to go to work after the concert.) I may be old, but I realized I need to get out more often and just have fun.

14. But I won’t wear spandex. Or fishnets.

Filed Under: me me me, pop culture, random ·


Mar 7, 2011

Losing My Mind (And Finding It Again), Part 3

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(Continued from part 1 and part 2)

I’d like to say everything was sunshine and rainbows after that first pill, but that’s not the way it happened. I continued taking the pills as instructed, although I quickly found there were some side effects I didn’t like. My muscles tensed up sometimes. Occasionally my heart pounded hard and my head felt like it was in a vice. I wasn’t so sure the clear thoughts were worth the physical trade-offs. But it was easier to fall asleep without all of that noise in my head.

At my next check-up, I told everything to my doctor. First, she was amazed that I could sleep while taking the medication, saying many aren’t able to sleep and she often has to prescribe a sleeping pill as well. For the other symptoms, we agreed to try cutting the dose in half to see if it helped. She also suggested trying a different medication, but due to health insurance not covering any of these drugs, I needed to stick to the cheapest option.

Cutting the dose in half did help, and after a year and a half most of the physical symptoms have vanished. What I like the most about this medication is that it’s short-acting, so I only take it when I need it. This goes a long way in helping me feel like I’m not chained for life to a drug. If I know I’m going to need focus for a task, I take it. If it’s the weekend and we’ve got nothing planned, I skip it. My doctor encouraged me to take vacations from the medication, too, so that I don’t build up a tolerance and need a higher dose later. So far it seems to be working.

Even though the first time I took the medication I experienced complete silence in my head, it hasn’t remained that way. I still have to struggle for focus every single day. Some days are worse than others, but give my brain a chance to spin off in some random direction and it’ll quickly jump on it. The medication just makes my efforts for focus a little easier, and it provides a temporary defense so I can build up greater mental discipline against the waves of sensory onslaught that threaten to drown me on a daily basis.

At the end of last year, with my doctor’s guidance, I tried to stand alone without any pharmaceutical help. It had been over a year and I thought maybe I was ready. I wasn’t ready. By the end of a week I was a disorganized mess.

The hardest part of all of this has been the mixed reactions I get when I do tell people I have ADD. Some have been genuinely supportive and wonderful. Others have nodded and listened, but I could tell they didn’t quite believe me.

And some have been outright mean, stating that there’s nothing wrong with me and I’m just looking for an easy way to cope with a mind and life like any other. These people don’t believe in attention-deficit disorder, especially not for adults. I’m just lazy, weak in mind and discipline, and either I don’t have enough to do in life to sit around and think I have ADD, or I’m too busy and would be fine if I just cut out all of this “online” stuff and stuck to work and mothering.

(As you might guess, some of these people also don’t believe much in autism and think Cordy just needs more discipline.)

I can function now. I can carry a thought from the beginning to the end without losing it halfway through. I can do my job without struggling to push past random thoughts to retrieve the knowledge I need. I can focus on a conversation with a friend. It’s awesome.

I’m also still me, just more anchored in the moment than I was before. I can still recall obscure facts rapidly, I can still think several steps ahead of what I’m currently working on, and I have yet to be told that my personality has changed in any way other than being happier with my life.

This is all a journey, and I’m continuing to find my way through it. My focus still isn’t perfect. I may not need the medication in the future, or I may try a different medication when we have health insurance again. I don’t know how it will all play out. But I’m thrilled with the progress of the past year and a half, and I’m so thankful to feel like I’m in control of my mind again.

I’ve learned that mental disorders and illnesses are simply conditions and not something to be ashamed of. Seeking out help isn’t weakness, it’s taking care of yourself, just as you would diabetes or heart disease or an infection.

It’s good to be comfortable in my own head again.

Filed Under: clearly insane, me me me ·


Mar 4, 2011

Losing My Mind (And Finding It Again), Part 2

By ·

*continued from part 1*

Attention-deficit disorder? No, I’d never really considered that possibility for myself. Sure, I’ve jokingly claimed that I have ADD at conferences from so much going on, but actually having ADD? That condition had never crossed my mind.

My older daughter has autism, and there have been plenty of times when I’ve thought that maybe her autism came from me. I certainly have several of the traits, but don’t quite fit the overall profile for it. However, ADD is a diagnosis for hyper kids, right? Like, someone who bounces off walls and can’t sit still and is too loud and too talkative? I have never, ever, ever been what someone might call hyperactive. The couch and I have always been good friends.

I gave my doctor a puzzled look. “ADD? But I don’t have any energy at all.”

She explained the difference between the hyperactive type of ADD and the inattentive type of ADD. It made sense, but hearing that I might have ADD – something I thought was primarily limited to kids – frightened me.

I told my doctor I was honestly unsure if that was the problem. She suggested a one month trial of medication to find out.

Having taken antidepressants before, I was unsure if a month would be enough time. Antidepressants usually take 4-8 weeks to begin working, so wouldn’t ADD medications work the same way?

“How long will it take to know?” I asked.

“I think you’ll have a good idea after one pill,” she responded.

One pill? Really? What the hell was in this stuff?

I left my doctor’s office with my prescription, went to the pharmacy, and took my little bottle of pills home. I still remember it was a beautiful, sunny afternoon in October – not too warm, not too cold. Aaron wasn’t home, the girls were in school. It was just me and that little bottle.

Sitting on the couch, I took one pill out of the bottle and studied it in my hand. How could I know if this was the right diagnosis with just one small, round pill? Had my doctor lost her mind, too?

And then I wondered what would happen if it worked. Would I be chained for life to a pill? Would it change who I am? Would people treat me differently if they knew I had ADD?

I took a sip of water and swallowed the pill.

And then I waited.

My doctor said it would take 30 minutes or so for the medication to take effect. I counted the minutes on the clock as I sat in my quiet living room, mind racing with anxiety over what I had just done. All of my worried thoughts slammed into each other in a chaotic jumble that left me desperate to get out of my own head.

Unable to stand it anymore, I went upstairs and did some laundry to distract myself from my internal drama. After sorting clothing and starting the washer, I went back downstairs and resumed my wait on the couch.

I looked at the clock and realized it had been over 30 minutes. I didn’t really feel any different. Huh, I thought, maybe I don’t have ADD? I decided to stretch out on the couch and take a nap, disgusted that I got myself so worked up over nothing.

And that’s when I noticed it.

Silence.

No eight televisions all blaring thought fragments in my head. No songs competing for my attention. Just…quiet, along with intense focus and awareness.

My current thought about wondering if the med didn’t work was bouncing around in my head without any interference. It was crystal clear, like someone had taken a squeegee to my brain and removed all of the grime fogging it up.

I smiled. It felt great. I called Aaron and told him everything that had happened.

And I did take that nap, falling asleep more easily than normal.

Before I drifted to sleep, I remember saying out loud, with no one else to hear, “Apparently I do have ADD.”

—-
*Must break here. I didn’t intend for this to be so long, but it’s harder to write than I thought! The final part on Monday, and I swear it’ll be the final part.*

(Edited to add: Part 3 is now available.)

Filed Under: clearly insane, me me me ·


Mar 3, 2011

Losing My Mind (And Finding It Again), Part 1

By ·

Different ways I considered to start this post:

“I’ve been called scatterbrained. Funny thing is, they were right.”

“Do I owe you an e-mail or a call? Sorry, that happens a lot with me.”

“I’m on a drug, it’s called Charlie Sheen…”

—-

There’s no easy way to start talking about losing your mind. I’ve already deleted and started over several times, scared what people will think of me for sharing this. But it’s felt like a big dark secret holding me back, and it’s possible others are going through the same struggle, so I’m going to tell my story.

*deep breath & imagining all of you in your underwear to reduce my anxiety*

—-

I love to sleep. When I sleep, everything is quiet. Getting to sleep, however, is always more of a struggle. Because even if the room is completely quiet, it sounds like a busy New York street in my head.

When I was younger, thoughts in my head were rapid and clear. I was bored in school because I picked up the subject quickly and was ready to move on long before everyone else. When working on a project, my mind was always focused one or two steps ahead of what I was doing.

High school and college were periods of time when I both loved and hated my brain. I was proud of being smart, of being able to pull answers to obscure questions from my grey matter in split seconds. It also didn’t make me popular – when a question was asked in class, it was nearly impossible for me to not raise my hand, as my brain was screaming at me I KNOW THE ANSWER! SAY IT! SAY IT! SAY IT!

But I also started to notice that it never stopped. My thoughts raced from dawn to well into the night, and if I went to sleep exhausted, it was mental exhaustion, not physical. I hated working on long projects or reading long books, because I was distracted long before it was finished. I was also a champion procrastinator, preferring the rush of cramming it all in at the last minute. I never thought it was a problem, just a side effect of having a good brain. I had youth on my side and used that youthful energy to battle the negative aspects and keep my brain in line.

As I’ve grown older, the speed at which I think is still the same, but I’ve slowly grown more and more unable to deal with it. After all, it never stops. Never.

The best way to describe it is to imagine being in a room with 8 televisions and 2 radios on. They’re all loud, and all feature things you are thinking about. The songs compete for your attention, and as soon as you’re interested in something on one television, another one becomes even louder and drowns it out.

I hate having a brilliant thought for a post in my head, and just as I start to ponder how to develop it, another thought cuts in and suddenly I can’t remember the first one at all. Gone, just like that. Sure, it happens to all of us at some point, but I’m grasping at stray thoughts all day long, trying desperately to give my attention to the thoughts that are important, thoughts I can’t risk forgetting.

My memory is actually pretty good, when it makes enough of an impression for me to remember. If I’m eating lunch while distracted, though? I wouldn’t even be able to recall what I ate later that day. And at night, my thoughts keep going even when I want to stop. Moments of the day replay, random thoughts make quick drive-by passes just to perk my mind and keep it alert, and of course a song is always stuck in my head.

What I hate the most, though, is letting people down. Forgetting to send an e-mail to someone to check on them. Being unable to have a long talk with a friend who is hurting – looking them in the eyes while fighting internally to keep my thoughts on what they’re saying when my mind tries desperately to wander. (And I DO care! I want to listen! My mind is just bringing up random thoughts and there’s a bird in the tree behind you that is really pretty.)

Throughout my twenties, I visited my doctor several times for symptoms that I thought were depression: I was tired all the time, I had trouble falling asleep, I had no attention towards my work, I felt fuzzy-headed and down. Each time I was treated for depression, despite everything going well in my life at the time. The meds helped me cope, but did little to help stop my racing mind.

After becoming a mom, my coping abilities failed as my responsibilities increased. If I only had to take care of myself, I could get by, but adding kids to the mix quadrupled the number of things I had to keep track of and guaranteed that something was always forgotten. And, to add to the cacophony inside my head, I now had bone-chilling anxiety screaming what if? at me as well.

A year and a half ago, I went back to my doctor. I was exhausted, I was fuzzy-headed, and I felt like I was losing my mind. I nearly broke down in tears as I told my doctor about locking our door at night, telling myself that I locked it, going upstairs to bed, and then being completely unable to remember if I’d locked the door or not, requiring me to go check again. I explained how my mind was a jumble, and it was getting harder and harder to think through an entire thought without losing it somewhere along the way.

I was convinced I had Alzheimer’s or early onset dementia, and I was scared. My thoughts were clear and speedy when I was younger, why were they failing me now? Was this the beginning of a slow slide into forgetting everything?

That office visit went far longer than I expected. My doctor looked back through my history, and we discussed practically everything I’ve written here and so much more. Blood tests were run to check practically everything that could be checked, and they were all amazingly normal.

And then my doctor asked, “Have you ever thought you could have attention-deficit disorder?”

Really?

Part two coming very soon, I promise. 

(Edited to add: Part 2 is now available.)

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Filed Under: clearly insane, me me me, memories ·