autistic

Don’t Look at the Whole Staircase

Chris Irvine, Parent CoachLeave a comment

I like to think I have some natural gifts that lend themselves to good parenting. I believe I am empathetic, creative, logical and kind, which helps me connect to people in general and my kids in particular. That’s not to say these qualities are always activated when I’m parenting. Perhaps I’m using one or another, or perhaps they’ve all flown out the window in a moment of frustration or exhaustion.

I also happen to have two of the least fickle kids on the planet. Once they decide, They Have Decided. On whatever it is. Maddie’s way of expressing her decisiveness is the simple act of refusing to bend. She has decided not go to to Thanksgiving at Grandma’s, for example, so there is nothing you can say or do, no threat of punishment or offer of reward, that will alter her decision. The answer is no, and that’s that. We can make our whole family insane trying to change her mind, and the likely outcome involves not even a glimmer of hope. There are exceptions, of course. Like when I was trying to potty train a nearly four-year old kid who just wasn’t interested in the process, so I started challenging her to race me to the bathroom. I think it worked twice, and then that was the end of that. Still, I was thrilled with my double victory.

My son’s way is different. He can argue you into a rabid, frenzied froth of frustration. You will never win that argument. You might not lose it either, but as a parent not winning is pretty much the same as losing. I had an early indication of his logic skills when he was a five-year old preschooler. He had shut the door to his room, which was unusual, so I thought I’d better investigate. I soon discovered he was in his closet, door closed. He had to be up to something. “What do you have in there?” I queried. Out stretched a hand holding a box of goldfish crackers. “Why are you hiding those?” I asked. “If you had asked me I would have said yes.” And then something dawned on me. “What else do you have in there?” Out stretched his hand with what turned out to be decoy number two: a box of Teddy Grahams. I repeated my response. I was detecting a pattern. “What ELSE do you have in there?” And there it was, a bag of chocolate chips. And that was NOT okay with me. That evil genius had rolled out his decoys in hopes of avoiding the final discovery. “We’re screwed,” I told my husband. Some years later – maybe he was eight – he effectively asked me a series questions, knowing how I would answer, so that I would actually lead myself to his desired conclusion. I don’t remember the topic, but I do remember realizing what was happening just before he succeeded.

I am reminded of our friend’s mom who early on recognized our challenge with Maddie. “Her stubbornness will serve her well when she’s grown. The hard part is getting from here to there.” Amen, Joan, amen. Same for our son, I’m sure.

So anytime I can talk my kids into anything, I’m surprised and delighted and pretty darn proud of myself.

A couple weeks ago my niece M turned 18. Maddie and M are only nine months apart and truly the best of friends. Our families live about 45 minutes away from each other. M is incredibly busy, so the girls don’t see each other as much as they’d like. So you would think, wouldn’t you, that the upcoming party and sleepover would be unmissable.

As I try to do with Maddie, I had reminded her each day for a few days to prepare her for the event. Late morning the day of the party I sat down on Maddie’s bed and said, “We should leave around three o’clock today.”

And to my surprise she responded, “I have been trying to motivate myself all week, and I just haven’t been able to do it.”

All the months since she graduated high school, I have been avoiding, as much as possible, any situation that involved making Maddie go somewhere. After all those years of morning turmoil, I realized not only did I no longer have the energy to take on that fight, but that the fight was futile anyway. So much wasted effort, so much heart-attack inducing frustration that ultimately had no positive effect—I just couldn’t go back to that. And yet here I was.  I could feel the tightness in my chest forming almost immediately. We couldn’t let our sweet M down on her big day. And I really wanted Maddie to enjoy what I was certain would be a good night. What was I going to do?

I pulled myself together enough to say, “I think it’s been about two weeks since you went anywhere. That happens to me too, like when I’m sick for a week and I’ve been at home, it’s just easier to stay home than go anywhere. Eventually I just make myself go somewhere and then it gets easier. It happens to everyone,” I assured her.

She was still unmoved.

“OK,” I said. “Forget about going all the way up to M’s house. Let’s just think of something small to do first. Like maybe we could go to the coffee shop for lunch.” Originally I had required she take a shower, but I realized that was a serious obstacle, so I let that go.

“Is How to Train Your Dragon playing anywhere?“ she asked. A glimmer of hope!

“I’m sure it is!”

So we picked a movie time that allowed us a quick lunch out and would also get us to the party in time. I said, “Just throw your toothbrush and toothpaste in your bag in case we get up to M’s.”

Don’t look at the whole staircase. Just look at the first step.

I’m sure I’d heard that before but it wasn’t until a week or two later that a motivational speaker I was watching used that phrase. I had put it into practice without naming it, and to my amazement and delight, it worked. Just like all the times I folded Maddie’s writing assignment page in half so it didn’t look so scary. “Just do a Maddie-sized essay,” I’d say. Just one small step at a time.

We had our quick lunch (delicious and fun!), drove north to the movie (love those Dragon movies!) and it was an easy and welcome third step to drive further north to see her cousin. She was happy to be there and, as expected, she had a wonderful time.

I patted myself on the back or a job well done. But not because I won a battle. It was because I used one or two of my gifts at the right time to look at my daughter and see what she needed. Just a peek at the first step!

Nailed it.

The Brave Speak for Those Who Can’t

Chris Irvine, Parent CoachLeave a comment

A friend recently asked me for advice. She has a family member whose toddler shows signs of autism. Knowing the importance and impact of early intervention, she  wants desperately to say something to the parents and suggest their child be assessed. She also has experience as an educator and parent that helps inform her suspicions. So, let’s say she brings up this tough issue and the parents take offense.  Based on what she told me, that’s not an unlikely response.

Does she risk upsetting her relationship with the parents to advocate for the child? That’s a tough choice to make, but I think that answer is yes.

Here was my reassurance to her, which I hope she can pass on to her relative:

  1. Getting a diagnosis doesn’t make autism (or whatever it may be) any truer than it is without the diagnosis.  In that moment that word is uttered in reference to a child (or adult), the person hasn’t changed. She is exactly who she was the moment before.
  2. One gift of the diagnosis is a life-changing light suddenly shone on your child. Many of the questions you may have had are quite suddenly answered. Not all of the questions, of course, because each child (on the spectrum or not) is a unique individual. But you can begin the process of understanding your child in a new way, enabling you to parent them with newfound empathy and patience.
  3. Another gift – and I cannot stress this enough – is that services become more readily available to you. Since Maddie was not diagnosed until around age 10, she struggled through elementary school as the teachers and staff struggled to understand her. And then, magically, we had the word “Asperger’s” to throw around and suddenly Maddie was less of an enigma despite having not changed a bit. Was everything magically solved at that point? Certainly not, but instead of just being the smart, stubborn kid who refused to perform, or the weird kid who repeated the word “paperclip” over and over until she was eventually sent outside the classroom, or the kid who would hide during school hours, throwing the staff into a frenzy, she became a more sympathetic person who deserved compassion and help. It makes me so sad to think about the years she was misunderstood and therefore mistreated.

I was recently talking with a friend in her 40s who has chosen not to have children. If she ever changed her mind, she said, she would want to go right into the teenage years, skipping right past all the noise and messiness that comes with babies and young children. We agreed adopting an older child is fraught with uncertainty, but then I pointed out that even when you have a baby, it’s still a roll of the dice. Your child might become an Oscar-winning actress, or a homeless addict, or a high school valedictorian who goes on to solve world poverty or goes to jail for insider training. Or she might have autism. Or some combination of those things.

Certainly the dreams of an expectant couple do not include addiction or a prison sentence. Or autism (to be clear, I’m not equating autism to either of those things). And yet a diagnosis of autism is an increasingly likely outcome of an assessment. Awareness and the ability to diagnose autism have improved dramatically over the last decade or two, but depending upon the trajectory of a child’s development, and depending upon their gender (boys are more likely than girls to get an early diagnosis), a chid may still go for years without getting a diagnosis and therefore the appropriate help. I know because that’s what happened to us. So many years of pain and frustration and confusion could have been avoided. There are so many things I would have approached differently if only I had better understood the daughter I so desperately wanted to know.

For my entire life deep in my soul I have believed in speaking up for those who cannot speak for themselves. If anybody qualifies for that, it’s a young child with autism. It might take some real courage to speak the words, “Have you thought about having Reilly assessed?” Or “I’ve heard of some services that might benefit Sophia.” But remember, you might be the only person to utter the magic words that eventually open the door to early intervention, a deeper understanding of that child, and continued services throughout that child’s educational experience and beyond.

If you know a family who needs help navigating this special realm of parenting, or who hasn’t dared consider autism or a learning difference a possibility, look into yourself and see if you can find the courage to speak up as an advocate for that child. A gentle observation or suggestion, or a connection to a free assessment, could change the lives of the whole family forever.

Be brave. Speak up with love and compassion. And know in your heart you’re doing the right thing.

And even if you can’t, I still love you.

Playing the Lottery

Chris Irvine, Parent CoachLeave a comment

Five days ago my family went down like dominoes. Within two days we went from four healthy people to four sick people, but as usual, Maddie feels better than any of us. I thought maybe I had pneumonia. I’ve had pneumonia. It was a six weeks of utter and total misery. If I decided to take a shower one day, well then I was done. I coughed and coughed until I vomited, over and over and over. I couldn’t breathe very well and I shook and trembled my way through the day, all the while just lying in my own misery. I certainly don’t feel anywhere near that sick now, but just the fear of even a touch of that experience is enough to send me straight to bed.

Maddie, on the other hand, is keenly aware of her strong constitution. We talk about it often. She either manages to avoid viruses altogether or if she is stricken, her experience is often short and relatively manageable. Lucky kid. Even when she had pertussis at ten years old, she wasn’t really that sick. I happened to be aware whooping cough was making a bit of a comeback in our neighborhood, in particular, so I took her to the doctor and voila! She had whooping cough. Other people who contracted the virus were the sickest they’d ever been, but Maddie just had a cough. She did have to be quarantined for two weeks, though, just to keep everyone else safe. But really it was nothing.

She is also freakishly strong. She’s the person I get to help me move furniture or bring big bags of dog food from the car down the two flights of stairs into our house. She loves that about herself. This is a person who mostly sits at her desk on her computer, or in bed watching TV, so that strength isn’t a function of exercise or conditioning. It’s just how she was born. She most certainly didn’t get it from me. My brain wants me to be strong, but I’m the person everyone tells to sit down and “Don’t hurt your back!” I hate that about myself, but that’s just how it is.

Since Maddie has been less affected the last few days than the rest of us, I’ve been asking her to help out a little bit. She is happy to deliver water to whoever needs it and would even cook somebody something if she knew how. The kitchen was piling up with dirty dishes, and, although I’m far from a neat freak, it’s the kitchen mess that irritates me the most. So this morning I asked her to empty the dishwasher. I thought I could muster the energy to fill it.

She immediately got to work and I was so thankful. Thankful she was up to the task and thankful she so cheerfully went for it.

“Thank you SO much, Maddie,” I said. “This helps me so much.”

“Well, I just can’t explain my strong constitution,” she said proudly.

“You won the genetic lottery,” I answered matter-of-factly.

Silence.

“Well, not totally,” she said.

My heart stopped. Was she going to say she wished she didn’t have Asperger’s? Was this conversation about to happen? I mean, I’m fully prepared for it because deep in my heart I really don’t think of her autism as a disability or anything to change. I don’t think that way at all. And as we all do for our children, I just want her to be happy with herself.  We love her as she is and there’s simply no reason for her not to as well.

“Bad ankles,” she explained.

My body relaxed. The ankles! She does have shitty ankles, just like her parents (we’ve both had the very same ankle surgery). And she has horrible flat feet, to be honest. But I could never have imagined being so happy to hear somebody complain about their ankles.

“Well, that was kind of inevitable,” I shrugged.

Before she resumed her kitchen task, I hugged her. Extra tightly and extra long.

I’m pretty sure I’m the one who won the lottery.

Dirty Shirt

Chris Irvine, Parent CoachLeave a comment

Today is June 19th. My son graduated eighth grade last Friday, so it feels like the official first day of vacation. I slept in! I put on a pretty dress! I can run errands whenever I want because I’m not tied down by school pick up time! I didn’t pack anybody’s lunch! It’s a gorgeous day and I’m loving it.

But somebody hasn’t changed her shirt for five days. This is the sixth day. I know this because the day the shirt was first donned was Maddie’s birthday, June 14th, after she opened a small gift in the morning and then decided to wear her new Flash shirt to the Giants game.

She comes into my room late this morning. I see that shirt and my disgust rises to the surface. The dirty shirt also means she hasn’t taken a shower for at least six days because I know she didn’t take one that morning. You hope your kids stop grossing you at some point, right?

“Maddie, the is the sixth day you’ve been wearing that shirt. You need to shower and put on a clean shirt.” One doesn’t gently toss hints to Maddie. You have to (and really get to, I suppose) be completely honest and blunt. I can’t imagine how many times I’ve said, “You’re gross,” or “You stink,” or “Get out of my room because I can smell you from five feet away. Seriously, don’t stink up my room.”

“Later,” she says, dryly. Later often ends up meaning “no” in the end. I know how this works.

“Why not right now?” I ask.

She just looks at me.

“If you don’t do it later today, I’ll take your computer away.” I can’t actually take her whole computer away but I can certainly swipe her keyboard or something so she can’t use it.

“Oh, will you?” she says defiantly.

I’m now wondering why I even went down that road. Either we’ll get in a huge battle or I’ll decide against it, knowing it’s futile at best, or first step on the wrong road, at worst.

She grabs the allergy medication she came for and leaves. I move on. I can’t deal with this right now. I have other things to do and I want to enjoy this first day of summer.

Yesterday was Father’s Day and the plan was to go to my in-laws’ house for the afternoon. The whole family (minus a couple of young adult cousins) would be there to celebrate Grandpa Jim for both Father’s Day and his upcoming 78th birthday. My kids love their grandparents, and they love their dad. Grandpa Jim is also in declining health. We all want to spend time with these wonderful people while we can.

I informed Maddie of the plans the day before. “I don’t want to go,” she said.

“Well, it’s Father’s Day, and the is what Dad wants to do.”

“But I don’t want to,” she repeated.

“It’s not about what you want to do. This is about doing what your dad wants to do even if you don’t want to.”

“Well, I don’t WANT to,” she said yet again.

I’m not sure if she said anything else, but regardless of the words, her expression said it all. She had no intention of going.

Sometimes Maddie is incredibly empathic. Other times she is swallowed up by her autism (the key here being “auto” or “self”), and she can’t see beyond herself.

That night I talked to my husband and informed of the situation. We agreed we would give it a try in the morning, but not engage in a fight over it. I guess we’ve finally learned it doesn’t pay. The typical scenario when we push hard is everybody ends up upset (including our son), and she doesn’t come anyway. So we’ve ruined everybody’s day for nothing.

It’s sad, time after time, to visit the grandparents with only one of our kids (and often both, because when one is down, often the other goes down with her).  They know Maddie (the explanation yesterday was H is sick—true—and Maddie is being Maddie), but it’s still sad. It’s hard for us to do anything as a family, really, often because of Maddie’s inability to motivate herself. She did rally for both Mother’s Day and my birthday, and honestly that all I could have asked of her. It meant so much for me that she got out of bed on a Sunday morning for brunch, and then got dressed (no shower, no clean shirt, a hat to cover up her awful hair) for my birthday dinner at a restaurant she didn’t want to go to, just to make me happy.

So today there she is in that stinky, filthy shirt and I’m kind of angry and rather disgusted. She’s in her smelly pigsty of a room (I’m pretty sure a cat peed in there) playing Minecraft with her online friends. She’s happy.

Maybe this will be one of those “best days of my life” when she rises from her chair, grabs a towel, and takes care of business without another word on my part. I know this is possible. But really I have to be prepared to keep pushing, gently but firmly, without losing my patience or my mind.

Fingers crossed that stinky shirt is in the washing machine by bedtime.

_____

Update: I just finished writing this and that stinky shirt walked in (with the person inside of it) and the shower is ON!!

I grabbed Maddie’s dirty clothes from the bathroom floor, ripped her sheets and comforter off her bed, and threw them in the wash, hoping to de-stink this place a little.

It’s the greatest day of my life!

Separated at Birth

Chris Irvine, Parent CoachLeave a comment

When Maddie was a toddler, and just becoming able to express all those thoughts she was having thanks to those finally-developing fine motor skills in her face (yes, speaking is all about fine motor skills!), she began to ask me every single day, “Is there a party today?”

She had decided birthday parties were her passion. A truly good day would involve a party. She wasn’t able to say a whole lot, really, so I couldn’t be sure what exactly what it was about parties that so fully floated her boat, but clearly she enjoyed being in a social atmosphere. Many kids on the autism spectrum are paralyzed by anxiety in groups, while some just scoot off to the side in quiet avoidance, but not Maddie. She may not have been playing on the same level as the other kids, but apparently she liked them anyway. A lot. Or maybe it was the cake.

Maddie has never been a particular garrulous person, either, but when she has something to say, it’s usually either interesting or insightful or funny (except when she continues to repeat that funny thing long after it lost its humor). As an elementary student, she would have usually one or two friends, typically kids who had some social challenge or other. I remember her kindergarten teacher, whom I liked very much otherwise, saying, “I don’t really see her as (and I paraphrase here) a popular kid.” Wow, I thought, OK. Not everyone can be that kid. I have a feeling the teacher was that kid, and perhaps her four children were too, so maybe a child who’s at the center of things is what she expects or sees as necessary for her definition of success. Maddie would be on the fringes, I suppose she meant. At the time all I knew was her milestones had been delayed, but she was a cute smart kid who was drawn to kids who struggled, and who was having a challenging time adapting to kindergarten as evidenced by a few episodes of sitting under a table screaming (in response, I believe, to her best friend’s difficulties) and an occasion or two in which she hid at school and nobody could find her for awhile. Would she ever be in the center socially? I doubted it, but it seemed like a ridiculous thing expect or even think about.

She has never had much of a social life, though. She had limited numbers of friends as a younger kid, for one thing, and those friends weren’t particularly social themselves. But even now, since she has grown in confidence as well as social skills, and is better able to socialize, she shows little interest in nurturing friendships outside of school. There is the exception of her cousin, however, the only person she longs to spend time with.

For years I would ask her daily who she ate lunch with. “Do you want to invite them over on Saturday?” I would ask. Or “I could pick them up and take you both to a movie if you want.” Or “Why don’t you text him and see if he wants to play that video game you both like?” A shrug of disinterest inevitably followed. It seemed like she ought to want to hang out with her peers, but apparently she didn’t. She still doesn’t despite being isolated at home since she quit high school.

And then something happened. I have an old friend whom I hadn’t seen for probably 13 years. We were never close as we were connected via our husbands, who also weren’t especially close, and many years ago she had divorced and moved away with her young daughter. “Suzi” moved back to the area a few years ago, and although I hadn’t seen her, we had been connected on Facebook and she had been reading my blog. After reading about Maddie’s LARPing (live action role play) success at winter camp, Suzi was moved to action. It turns out her 14-year-old daughter Caitlin has similar interests, not to mention a few shared personality traits. Suzi asked if perhaps Maddie would be interested in meeting Caitlin.

Maddie has historically befriended boys far more than girls, although girls like her very much. She literally could not be less interested in things like makeup and clothes and hair and nails, as evidenced by her avoidance of such basics as showering and wearing clean pants, and she’s not interested in talking about boys even though she’s had her share of crushes. And forget small talk. She wants to talk about Minecraft and LARPing and the Assassin’s Creed video games and Star Wars and anime. Otherwise, BOR-ING!

She has also announced, with conviction, her opposition to what she calls “forced friendships.” Because of that she shunned this wonderful program at her high school called PALS in which select volunteers from the mainstream student body are paired with special ed students for social activities including a weekly lunch and a monthly party. It’s an awesome program. They have to turn away volunteers! But Maddie rejected it outright because, she said, of her total disinterest in those “forced friendships.”

So when I mentioned this new potential friend to Maddie, I wasn’t sure what she would say. Luckily I said the magic word (LARPing!) and a match was made. Suzi and I agreed on a time for them to meet and Maddie was absolutely giddy for a week, making all sorts of plans and repeatedly asking me about this mysterious Caitlin.

And then the moment arrived. Suzi and Caitlin knocked on the door and I opened it to welcome them. They walked down our entry hall and then Maddie and Caitlin met eyes. They stood there for a moment taking each other in. I looked at Caitlin, similar to Maddie in height, also wearing glasses, and remarked on her soft and interesting sweatshirt.

“Is it a dragon?” I asked.

“It’s Night Fury. From ‘How to Train Your Dragon,'” Suzi said. “She found it on Etsy.”

“Oh, I am very familiar with Night Fury,” I said. I nodded sideways towards Maddie, who happens to have a rather large stuffed Night Fury herself from many years ago when the movie first came out. She was obsessed. She still kind of is.

As the girls stood there looking at each other, I was just astounded. Here, practically under our noses all this time, was Maddie’s potential soul mate.

“Separated at birth?” I laughed to Suzi in amazement.

I was recovering from the flu, so Suzi graciously took the girls out to dinner after she and I caught up on the many years since we’d seen each other as Maddie and Caitlin huddled in Maddie’s messy room and, apparently, talked and talked and planned and planned. I don’t know if I’ve ever seen Maddie like that before!

I do believe a friendship has been born. And that’s really all you need: one good friend. My son has a nice group of long-time friends, and Maddie has struggled to have friendships outside of school. So seeing the potential friendship forming before my eyes is a beautiful thing. It’s been a long time coming! Separated at birth, perhaps, but reunited at long last.

Let the LARPing begin.

The Art of Acceptance

Chris Irvine, Parent CoachLeave a comment

One of the many concepts I have struggled with and contemplated over the years of parenting my autistic child has been the difference between giving up and acceptance. I have come to the conclusion that it’s simply a matter of mindset because the outcome of giving up and acceptance is the same: you recognize there is a reality you probably can’t change, so you put your energies elsewhere.

So many times I have felt like I was giving up. Or perhaps just giving up too soon. I was hard on myself, too. Remember my failure to chart? I felt so guilty when every single professional we worked with, including psychologists, psychiatrists, and occupational therapists, insisted that making reward charts was the answer. THE answer. It never was the answer for us, and I knew it. But I would often try for a week, and then just bail out. Was I giving up? I didn’t know. I just knew it wasn’t working. It seemed futile. Maybe I wasn’t trying hard enough. Maybe I wasn’t organized enough or disciplined enough. Maybe it felt too difficult for me (it is true it’s not in my nature).

I realized at some point, however, that it wasn’t my failure. Charts were meaningless to Maddie. So I could release myself from guilt because really what I was doing was recognizing what was true (acceptance!) and acting accordingly. Maddie didn’t give a shit about a reward chart and she never would, so why keep trying? I could release myself. And guess what? That is not the same as giving up!

I also remember deciding there would be no more fights about homework. And in our house, that meant no homework at all. It wasn’t going to happen without a lot of pushing on my part, and often my energy was wasted. I really should have made that decision when Maddie was in first grade, when homework first came into our lives. What should have taken ten minutes (an appropriate length of time for a six-year-old, if they absolutely must have homework at all) took a full hour because of the Asperger’s (and with it, ADHD) I didn’t know she had. I don’t know why I didn’t just tell the teacher, “Look, this is killing us.” I now realize years later that she would have most likely said “No problem.” But I was fighting it, swimming upstream in a deluge, losing my mind over something that was at the time both impossible and unnecessary. If only I’d had the wisdom of acceptance back then. Or the next year, or the next year, or the year after that. And on and on.

Finally, after more than eleven years of this struggle, two weeks ago we began the new phase of Maddie’s education. She hasn’t set foot on a campus for months, and in fact she took a couple months off to do whatever the heck she wanted. Which, by the way, was awesome for me, too. I realize parenting involves occasional conflicts with your kids. You will inevitably be at odds at least once in awhile. But the daily grind of morning-long battles, fraught with anxiety on both our parts, was just too much. For both of us. I got to say at least a temporary goodbye to migraines. And, it turns out, Maddie was able to to go off the Prozac she’s been taking since she was nine.

I noticed a few days ago that her prescription bottle was still in the Ziploc bag she had taken to camp last month. She had been a bit less reliable with her nightly medication since she quit school. I was no longer managing my teenager’s bedtime, which involved watching the clock, telling her five times to brush her teeth, cleaning off her bed, filling her water bottle, reminding her to take her medication, and hanging out for a bit (I do miss our nighttime conversations) before turning off her light and saying good night. So I wasn’t aware she had simply stopped. Fortunately, unlike many similar medications, you can apparently just stop cold turkey without withdrawal symptoms.

After I spotted the neglected bottle, I casually asked Maddie if she had been taking her medication. “No,” she said, matter-of-factly.

“I thought so. Are you feeling okay?” I asked.

“Yup!” Clearly she was feeling better than OK.

“If you start feeling any anxiety or if you feel a little depressed, you need to tell me, okay?”

“Yup!” And I know she will. I’m so grateful for that.

And so here we are. Her decision to quit school relieved me of that two-month migraine and apparently freed Maddie from the anxiety, in particular, that had been plaguing her since the fourth grade. Seven years later (SEVEN YEARS!), we figured out together that “giving up” on school was really just accepting that it wasn’t working, and then making the choice to do something else, and rather magically, we are both okay. After all these years of struggle, all these years of meetings and IEPs, and then no IEPs, and then IEPs again, after traumatizing experiments with ADHD meds, after all those fights and struggles and tears and digging in on her part and frustration and yelling on my part, and frustration and even the occasional physical outburst on her part, and my trying and trying and feeling like a failure, and wondering what I should do, and then trying something and finding that doesn’t work, and trying something else and then something else, and feeling defeated and exhausted and afraid and discouraged, Maddie and I found acceptance.

And so, for now, we are free!

The difference between giving up and acceptance, it turns out, is in your feeling of power. When you give up, you are admitting defeat. The thing, whatever it is, has won. And so you shrug and say, well forget it. With acceptance, you are making a choice. You are not a victim. You are in charge. YOU say, I have decided this thing, whatever it is, is happening, and you find a way to embrace it, and hopefully, to make the best of it and find a new path to peace.

Still Looking for My Inner Bad-Ass

Chris Irvine, Parent Coach3 Comments

It’s the beginning of a new year. And the beginning of a new era. A school-free era for my kid. Which is great. But it’s also an era of exploration of sorts. Hmmm…now that I see those words I realize the exploration era isn’t new at all. It’s about 16 1/2 years old right now. And it’s not really getting any easier.

One of the areas I have had to explore is within myself. And that is my ability to ask for help. Oh man, do I suck at that. It is not a point of pride that I’m like that. In fact, I think it’s a deficiency. I mean, isn’t it a bit superior to think that I’m to be the helper only? That perhaps I’m beyond needing help?

I have explored this in therapy. For years, when the stress of the mornings (and the afternoons and evenings and nighttimes) was about to break me, my therapist, in her infinite wisdom, advised me to hire help. If a had a person in my home to do the mundane stuff, it would free up my energy to do the hard stuff. And perhaps I might not actually GO CRAZY. We had that conversation so many times, and I would nod my head in agreement. “That is such a great idea!” I would say. “Yes! I’ll for sure look into that!” But apparently I didn’t mean it because by the the time I was closing to door to her office and heading home, I was thinking, “Nope.”

I know where I get this from, Mom. My mom is one of those bake-a-lasagne-while-pouring-concrete kind of moms who also sewed our clothes and mowed the lawn and painted the outside of the house and made dinner out of nothing and gave us every last dime she ever had to make us happy. But would she ever ask for help? Uh, nope. The reigning philosophy at our house long preceded Tim Gunn: Make it work. Do with what you have. You can do it because you just have to. That’s what a strong person does.

So here I am. I’m a grown woman. I not only don’t mow a lawn, I don’t even have a lawn. We have a gardener who comes twice a month for some basic yard clean up. I knew by the time I was seven that sewing machines and I were destined to be enemies. (In fact, at some point my mom put my sister and I to work simply cutting out the patterns pinned to the fabric, and I was so bad at that, she told me to forget it). We have a weekly house cleaner who does all the really big stuff (although I certainly spend a ridiculous amount of time doing laundry and cleaning the kitchen and generally trying to keep my house from being a pig-sty, emphasis on the word “trying”). For years, though, I felt so weird about it that I would help our house cleaner when she was here. I still do a little bit, telling her to forget this room or that, or don’t worry about the floors she didn’t get to today, or here let me play with your kid while you’re working.

In comparison to my mom, my workload is pathetically easy. And yet still I am overwhelmed to the point of occasionally falling apart in a big way. And I still won’t get help. There is just something inside me that expects that I can do all the parenting because that is how it’s done. I should be able to handle everything with my kid. That’s my job! And if I can’t, perhaps that means I’m not good enough. I would never think that about anybody else. In fact, I’ll be your biggest cheerleader if you say to me, “Ya know, this is too hard for me. I’m getting help.”

“Good for you!” I would say. “We all need help!” And I would mean it.

Perhaps even more of a roadblock in getting help for Maddie has simply been a lack of knowledge of what in the hell to ask for. I add those words quite intentionally because it’s the most humbling, frustrating, regrettable thing to find out, after years of struggling, there was help available that I could have asked for if only I had known about it. And that happened to me recently.

In preparing to move Maddie from her public high school to a home school environment, I sought out the professional experience of my friend “Carol.” She is an experienced behavioral therapist and business owner who works closely with schools to provide support and interventions for kids like Maddie. She is a not only a terrific person but also a great resource that I should have hired the minute I met her. (Quick advice for parents of special needs kids: Get yourself a professional advocate!)

Shortly before winter break, I received an email from Maddie’s teacher/case manager suggesting that I immediately un-enroll her from school so that she would receive Incompletes rather than F’s on her report card. Okay, I thought, I’d better do that because that’s what I was told to do. A week went by and I hadn’t made the official declaration because I hadn’t yet put an alternative education plan in place. I wasn’t sure what to do or how to do it yet, but after another reminder email from that teacher, I set about writing a long letter explaining why we were taking her out of school. I wanted the teachers and staff to know I appreciated everything they had done, but that, due to Maddie’s difficulties getting to school and because of the recommendation from the teacher that we officially un-enroll her, we were going to educate her at home.

Still somewhat apprehensive about making it official, I forwarded the draft of my letter to my professional friend Carol. I wanted her feedback on the letter, particularly since we had discussed hiring her to create a home school program (even though I kept thinking I could do it myself because I ought to be able to do it myself).

“Whoa!” she said. “Because of her IEP she should absolutely not be getting Fs.” She was a little bit angry, I sensed, because she believed Maddie’s case wasn’t being handled properly. She also wanted to know why more interventions hadn’t been attempted at the source; why hadn’t they sent somebody to our home to motivate Maddie to get to school? Why hadn’t she met with a counselor or psychologist to get at the core reason for her attendance problems? Why hadn’t there been a plan in place to address these issues?

Crap. I could have asked for all that? Those are things they can do? 

I know there are other parents out there who raise their voices and demand what their kid needs. I honestly don’t know how to do that. So feeling ineffectual in that way, I asked Carol to add to my letter wording that would properly and very specifically address what she thought I should ask for now: a specific plan to address the core issue of attendance and a clearly delineated academic program that would allow Maddie to graduate. I tried to write it myself, but the words just didn’t seem right and I felt as though I wasn’t even sure I knew what I was requesting.

So Carol, my friend and fierce advocate, using the voice she knows how to use working with schools and insurance companies to get what her clients need, was clear and unapologetic in her requests. I edited it all a little bit, softening the edges to better suit my own style, and sent it off with my fingers crossed.

And shortly after that I received a response. I had clearly offended her teacher, who seemed to take a rather defensive tone. And I immediately regretted my letter. I really hate offending people, for one thing (which is part of my problem, I guess). And I felt shitty because it seems that somebody else can acceptably use a more powerful voice because it belongs to them, but when I adopted this more demanding demeanor, it somehow came across as ungrateful and perhaps inauthentic. I fear I set this whole thing up by always being so undemanding and flexible, and then when I suddenly get all fierce, people don’t know what to make of it.

So I turned around with a sort-of apology, saying I hadn’t meant to be confrontational but instead I was trying to figure out what to do with Maddie and that I have always found it hard to know what to ask for and how to ask for it. (As of now, she is not un-enrolled and we are supposed to meet in January. Also I now have a clearer idea of what we’re working toward.)

And that made me feel better in a way (I nipped the conflict in the bud! Phew!) but worse in another. Here I was simply asking for something very specific for my child and pointing out that despite repeated requests for help I still hadn’t gotten her what she needs, and it was as if I was trying to pick a fight. And the last thing I wanted to do was start a fight. On the other hand, maybe that’s what I ought to do sometimes. Sometimes, it turns out, you really do have to be the squeaky wheel. Or the bitch. Or whatever.

So here it is, 2017, the year I will turn 50 (!), and I still struggle with asking for what I need. I even found the courage to ask for it and I ended up apologizing. One thing has become clearer as I write this: the ability to ask for what you want and to demand what you deserve is a strength, not a weakness.

Perhaps I think I need to write this on a some post-it note and stick it on my bathroom mirror:

“Use your voice and don’t apologize for it.”

And, perhaps:

“Be kind to yourself.”

How to Be Awesome

Chris Irvine, Parent Coach3 Comments

Yesterday I picked Maddie up from the camp bus. She has gone to winter camp for three years, and as you may know, the planning for winter camp begins the moment she leaves summer camp. Summer camp ends with a rest and then plans for winter camp. Basically this kid lives for camp. If she could do anything full time, it would be camp. Camp, camp and more camp. Thank goodness for camp! Have I mentioned she likes camp?

The first time she went to sleep-away camp, I was a nervous wreck the entire week. Instead of relaxing and enjoying having only one kid for a few days (it is SO MUCH EASIER), I lay awake in bed chewing my nails wondering if she was she ok emotionally without her mom. Would she be lonely, could she make friends? Would the kids be nice to her?  Did she need to call home? What if she got sick? Can she eat the food? What if she’s sad???

And then on pickup day I discovered what a magical place this camp was, and the only time I worried again was her first winter camp when it very suddenly became freezing for exactly the days she was there. I ordered wool socks from Amazon and overnighted them to camp. She thought it was weird. But I was glad I did it.

This session, though, I was a tiny bit worried. She had put so much effort into preparing something and I was afraid her heart would be broken.

Maddie’s current obsession (and I do not use that term lightly) is a video game called Assassin’s Creed. I don’t play video games at all, but I have seen enough of this game to understand its appeal. It takes place in various historical periods, and the visuals and costumes (HELLO COSTUMES!) are magnificent. She and my husband have declared Assassin’s Creed “their” game recently, and that’s how they connect. And his big gift to her this Christmas was an elaborate costume of the hero from the middle ages.

A few months ago, Maddie had an idea for camp. (Hey, thinking ahead!) Each cabin is charged with naming itself and creating a cheer. This is a creative bunch, given that it’s a performing and visual arts camp, so they always come up with something inspired. And inspired Maddie was. She wanted to name her cabin after one group in the video game and hope that the cabin of one of her guy friends would be their foe. In preparation, she bought 20 tee shirts, 10 black and 10 white. She made out of paper and duct tape (surprise!) emblems matching the groups and attached them with velcro. She made two incredible flags as well, again with the duct tape.

It was great to watch her pour her passion and creativity and time and effort into a project. I had nothing to do with it other than the requisite trip to Party City to get supplies. But all the while in the back of my head, I kept thinking this might not go as she planned. I didn’t want to dampen her spirits, but I also felt the need to prepare her for the possibility that the other kids aren’t so enthusiastic about Assassin’s Creed.

“I just don’t want it to ruin your camp experience if the kids don’t go for it,” I said. It hurt my heart to say it, but it was necessary.

“It won’t,” she replied. “I’ve gotten better at that.”

Well, indeed she has. And her self-awareness was startling and a bit of a relief.

All week I kept wondering how it was going. Perhaps her preparation would have been met with such appreciation that people would feel obligated to participate Or maybe there’s a whole teen cult of Assassin’s Creed among the drama set that I don’t know about.

Yesterday she arrived across the bay on the camp’s bus. When I drove up to retrieve her, she was already off the bus and waved me down. She looked great. Relatively clean, in her nice warm coat, hair in a pony tail, happy and relaxed.

After we threw our arms around each other for a long hug, a young lady introduced herself to me. “I’m Otter, Maddie’s counselor.” (All the counselors have nicknames, like Awkward and Sparkle and Tiny.) “We had a great week!” she said.

“Well, Maddie LIVES for camp,” I said.

“We know!” she said. Of course they know!

“She did a lot of preparation,” I said, stating the obvious.

“Yes, she did!” said Otter.

I turned to Maddie. “How did it go?”

“Well, it didn’t go like I expected. It turned out even better!”

I had been so afraid to ask her about the Assassin’s Creed thing, thinking perhaps if it had been a huge disappointment, that might not be her most desired topic of conversation. But now I had the opening to ask.

And this is how it went: The kids didn’t want to adopt her cabin themes. I didn’t ask for the details because it didn’t seem to matter. But what did matter is what came next. Instead of feeling rejected and disappointed, she decided to put all of her work to use in a different manner: She approached the camp director and suggested some LARPing (live action role playing). LARPing does involve costumes but it mostly involves particular types of battles and games. So she helped organize the whole thing and they rounded up pool noodles for weapons. There was a huge themed battle with those tee shirts and a big game of capture the flag with those great flags she made, and she got to not only enjoy all the fun but experience the rewards of her flexibility, creativity and leadership. I believe she felt positively heroic at that point. Apparently the LARPing was a huge success, and they all had Maddie to thank.

So she will begin preparing for next summer’s sessions. We’ll wash the shirts and she’ll make some more (a few kids kept theirs). And I suspect she’ll have some other ideas, as well, to help enhance the LARPing experience.

These moments are the glimmers—no, flashes!—of hope for the future. I don’t know what exactly Maddie will do, but what I do know is this: She is passionate and creative and flexible and she’s growing up and changing in all the best ways.

Finding My Voice

Chris Irvine, Parent CoachLeave a comment

Recently I wrote about what’s been keeping me from writing. A few personal distractions have factored in to be sure.

Now I have realized there has been another big distraction from my Asperger’s parenting blog. And that is the current election.

I won’t go into my opinions here. Suffice it to say they are strong. They are burning. They are becoming increasingly consuming of my mental energy. I have always had opinions about these things. I have some very firm beliefs, which have developed over the years as I have grown and matured and become more open-minded and more worldly. I would say they are mostly fully formed.

But like many of us, I have refrained from engaging in discourse about those taboo subjects: religion and politics. I think money is one too. I still don’t really want to discuss religion. That’s personal. Another person’s religious beliefs are their own. I respect them and value our differences. I am certainly curious to learn about various religions, but I don’t feel the need to convince anybody one way or the other or to be converted, either. And money is just not that interesting to discuss.

But politics has become something else for me all of a sudden. I am so fired up I feel like I might explode. And guess what? Sometime over the last year, I have found my voice. Partly it’s probably due to my age. I turned 49 last month. I still feel 25. I’m still goofy and silly and jokey and dancey and sing-y and face-makey and all that good stuff. One of my purposes in life is to have fun with my people. I want us all to enjoy ourselves. I put a lot of myself into that mission on a daily basis, particularly with my family. We dance with the dogs, and say “That’s what she said” as often as possible. I crack myself up, to be honest. Seriously, I am HI.LAR.I.OUS.

But this 49 thing has given me something very powerful. Maybe it’s courage. Maybe it’s kind of the old-lady-who-doesn’t-care-what-anybody-thinks attitude, even though I don’t exactly feel old. Maybe those are one in the same.

Or maybe writing 100 blog posts about my life, letting down my guard to expose my fears and failures and weaknesses and hopes, has given me the courage to speak my mind about other things.

Or maybe it’s because things are falling into place with my kids, which have been the consuming force in my life.  I’m learning to accept the challenges of my 16-year-old daughter, and my nearly 14-year-old son is becoming more independent. So I have this freed up energy, energy that is searching for a purpose. And I’m finding that purpose.

Whatever precipitated this development, here it is. I have found my voice. And I really do mean found. I have had this voice my whole life, but I’ve kept it quiet. I’ve been polite and diplomatic and quiet. I have sat around a table full of people who shared a singular viewpoint while I most vehemently but also silently disagreed. I didn’t want to stir up trouble. Oh, the fire burned in me, but my desire to be polite and maybe, I hate to admit, to be liked, has suppressed my voice.

I wish I had found it sooner. It seems like I wasted so much time being afraid to speak up. I was a painfully shy child, fearful of adults in general, even the lady at the Taco Bell window waiting to take my order. Or my neighbor’s grandma, who insisted she pull that sort-of loose tooth out of my five-year-old mouth. I was too timid and shy to stop her. Or my teachers, who just might call on me to speak. Even though I knew the answer or had something important or meaningful or even brilliant to say, the fear of having to open my mouth and expose myself was overwhelming. So first, I had to overcome my shyness, and that has been a lifelong journey.

But there is a lot of room between not being shy and being bold. I think I just figured that out.

So now, finally, as 50 looms, I have decided it’s time to be bold and use my voice for good. Do I still want people to like me? Well, sure, I suppose everybody does. But I want to be liked for what’s truly inside, and that’s coming out, people! It’s coming out! 

I want my kids to see me this way. I want them to see a fearless woman who speaks her mind, who stands by what she believes in. A person with a passion and a voice and the courage of her convictions. A person whose words can make a difference. Because words are my medium.

This particular blog will continue to focus mostly on parenting. No politics here, unless they involve autism or special needs or kids. I have decided, after 100 entries, that this blog is really about my journey as a mother more than Maddie’s journey as a teen, and this newfound courage is part of that journey. It’s my coming out, as they say. My declaration of strength and power and intention. My declaration of purpose. And it feels good.

 

 

 

 

 

 

 

 

Back on the Horse

Chris Irvine, Parent CoachLeave a comment

It’s been several months since I’ve written. I’m not completely certain why I’ve had such a dry spell. Certainly life has continued to provide challenges, failures, successes, more questions–with or without answers–and even some adventure.

I have my suspicions, though.

This blog has been primarily about raising Maddie. And in the last several months, although she has provided many an interesting moment, there have been some other serious issues on my mind, and I didn’t want to necessarily write about them.

One is my health. I’m one of those people who always has an issue. Or two. Or three. It’s my back. And migraines. And terrible allergies. And unexplained and ongoing gut issues. And my ankles are messed up. And I have an allergy-related sleep apnea that makes me so tired all the time. I might sleep for ten hours and still feel exhausted all day. It sucks. I’m slowly trying to address all of those things, but I’ve found it hard to say, stick to a Pilates schedule when my stomach hurts so bad all the time. I’m finally figuring that one out, so maybe it’s time for those Pilates classes again. And yes, I have to do something like Pilates where I’m less likely to aggravate my ankle or back or hip or whatever. I have one of those bodies.

Second is my marriage. It’s a struggle sometimes. Statistics show a greater risk of divorce among couples with special needs children. Boy, ain’t that the truth. As if being parents isn’t hard enough, you throw in some extra challenges that nobody’s really equipped to deal with, and you’re rolling the dice.

Third is the other kid. Our son. He’s almost 14. He’s such a cool human being. I’ve been challenged with two completely opposite children, so parenting each one is an adventure, to put it nicely. H is intelligent, thoughtful, philosophical, and deep. Sounds awesome, right? Well, those qualities are admirable and desirable and all that good stuff, but parenting a kid like that is hard. He can argue you into a corner, for one thing. And he never ever gives up. While I admire his persistence, sometimes it’s just exhausting. More on him later, though.

Also my parents. I love my mom and dad. They live about 45 minutes from us. I wish they were closer. So I could help them. On the other hand, they’re not super great at accepting help (like mother, like daughter, I’m afraid). My dad has suffered from debilitating depression and anxiety for many years. My therapist thinks he’s agoraphobic, among other things. The word “bipolar” has reared its ugly head of late. I suspect he has some PTSD from a few episodes from his younger life. Whatever the diagnosis, and whatever the cause, he is severely disabled. He rarely leaves the house. It’s too stressful. Just riding in the car is often more than he can bear. He hasn’t driven for years even though he is only just turning 70. So I worry about my dad. But even more so, I worry for my mom. She is a doer. A worker. A creator. She likes to make things, so for several years she has been sewing items to sell at a local consignment store. Or two. Or three. She also refinishes furniture and makes things like framed chalkboards for kids’ rooms. She cooks up a storm, too. She recently completely re-landscaped their front yard so it’s more drought-friendly. She likes to be industrious. She has also spent her life without a lot of extra money, so when something needs doing, she does it, for the most part, rather than paying somebody else to do it. Every once in awhile, there is something beyond her scope (particularly since becoming permanently partially disabled some years ago because of chronic wrist pain in both arms) and she’ll have to hire somebody. But her go-to is “just do it.” How do a person who can’t do anything and a person who only wants to do things live together? Guess what? The doer, my mom, adjusts her life to suit the other. There is a lot of going nowhere. Particularly because Mom worries about what might happen when she’s gone. Dad’s just not reliably level-headed anymore. I want to help them so desperately, but it seems to be out of my hands. I want my dad to be well and, even if he can’t be well, I want my mom to have a life.

So I’ve been distracted, I guess. And I haven’t felt compelled, or maybe just comfortable, putting all this in writing. I don’t want to “expose” anyone. I also don’t want to make this blog a tribute to all my problems, and most of all I think some of this stuff is kind of private. At least the other parties involved might think so.

And then there’s Maddie. She’s still exactly Maddie. She’s at camp right now, the camp she absolutely lives for the rest of the year. When we were anticipating a New York-London trip we took last month, I asked her if she was excited. “Meh,” she said. “CAMP!” That pretty much sums up her experience of our trip (another blog or two will cover that). She just wanted to get it over with and go to camp. So right now I can rest easy knowing she’s in her happy place. She’s probably filthy and she probably has terrible B.O., but it’s out of my hands, and isn’t that a beautiful thing!

And before that, of course, the infamous school year (the actual “Year of Living Hopefully”) came to a close. More on that in another entry, too.

So today I’m back. I remember now that I can write and I like to write and I have something to say. A lot of somethings to say.

The story continues.