family

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.

Happy ****ing New Year

Chris Irvine, Parent Coach1 Comment

Two thousand sixteen started out great! We went to a lively party at my BFF’s house just up the street for New Year’s Eve, and thanks to celebrating East Coast New Year’s in California, I was home before midnight. We celebrated the following night by dancing to a highly entertaining 80s cover band at a nearby music venue. I haven’t had such a fun-filled two hours in a very long time. I danced so hard I kind of injured my permanently fragile neck, but after about three days I was recovered. And it was totally worth it.

And then, on January 2nd, Maddie came home from camp. I am both sad and embarrassed to report that although I was certainly happy to see my sweetie-pie, life got more challenging in that instant. What followed was four unsuccessful days of badgering her to take a shower along with the anticipation of the impending school week. I was temporarily relieved when I learned she had Monday and Tuesday off, so we had a couple extra days of camp recovery time.

I was optimistic. I’m not sure why. There was no reason to believe that a new year would bring new behaviors. In fact, I have never put much importance on the change in years. So, one day it’s 2015 and the next day it’s 2016? One day it’s Thursday and the next day it’s Friday. So what? It’s just another day. Not very romantic or sentimental, I know. I have just never had that feeling that the first day of a new calendar year was particularly significant. So why for even a second did I think otherwise?

As it turns out, my first and usual instinct was right. We are right back where we started. In hell.

Tuesday Maddie was in a good mood. She woke up around 8:00, very early for a teenager on vacation. She had energy and was perky and when I asked her if she was ready for school the following day, she gave me an enthusiastic affirmative response. All right! I thought. Tomorrow is going to happen! 

Well, “tomorrow” did happen. Oh, yeah, it happened all right. It happened like all those other miserable days of 2015 when my tired kid just dug in her heels and said, “No.” How quickly my optimism turned into anxiety and a sense of defeat. Those feelings are so close to the surface for me all the time. Frankly it’s a wonder that I ever feel otherwise. But I guess it’s all that darn hope I try to grasp onto with my fingernails (or whatever substitutes for fingernails when your stressful life meets with a bad habit and you’re left with nails torn down to the nubs).

Maddie, too, was at least superficially optimistic about today. She chalked up her inability to (or refusal to) get up yesterday to a rough night with a cat who kept clawing at her face all night. She felt justified in the afternoon after sleeping an additional five hours. “See, M0m?” she pointed out. “It wasn’t really a choice to stay home. I needed to. I slept for five hours.”

“You could probably do that any day,” I replied. Seriously, what teenager couldn’t?

“Well, I’m better now. And I’ll put Daisy out tonight.”

“You promise you’ll go to school tomorrow?”

“Yes,” she insisted. And at the moment she really meant it. At least I think she did.

But promises don’t mean much to Maddie if breaking the promise behooves her in some way. Don’t get me wrong: if you tell her a secret, she’s a vault. If she promises you a sword, she’d rather skip her homework and/or sleep to make it. But if she’s promising to do something that’s going to be difficult, don’t count on much.

So as you guessed, this morning, day two, didn’t go so well. She did get up. She got dressed with a lot of coaxing and even some actual help from me. She even came upstairs and put on her backpack, but she stopped in her tracks when she stepped outside the front door.

Clearly she was stressed. She was so stressed, in fact, that she reverted to something she did long ago to soothe herself: she dampened a wash cloth to suck on. That’s a bad sign, I know, but I was hoping that a little self-soothing would help her cope with what was to come. And honestly I believe once she was on her way, everything would have been fine. But the anticipation of a challenging day was apparently too much.

And things went downhill from there.

I’m sick with a terrible cold, reminiscent of, but certainly not as terrible as, the case of pneumonia I had last year. My husband is sick, too.

“There’s some dog poop over there,” said my son. “It looks weird.” Our puppy hasn’t been 100% well the last few days, as evidenced by the varying levels of weirdness of what’s coming out of him. So I picked up what I could with some toilet paper and flushed it down the toilet, only to see water gurgle up and actually over flow. Luckily (or not so luckily) I have an inordinate amount of experience with clogged toilets, thanks mostly to Maddie’s historically dramatic overuse of toilet paper, so I went straight for the water supply and turned it off before too much water escaped.

Then it was time to take my son to school. We left just a few minutes later than normal, and then I forgot to make a particular left turn that helps us avoid traffic, so I got stuck in the usual frustrating line. I was thankful that he was willing to hop out of the car early so I could avoid the worst of it and turn around and go home. It’s the little things, you know.

I still have a little water to clean up. And I don’t think I have the right rug cleaner to do a great job on the dog poop. But those are little things too.

The big thing is Maddie. My son had a thousand ideas to share with me in the car on the way to school. He had tried several approaches to get Maddie motivated this morning, and while I marvel at his wisdom and thoughtfulness, he can’t really help me. I figured I’d let him try, though. Why not? After all, when one member of your family is acting out, the whole family suffers.

Maybe there’s an ALANON-type thing for families like ours. I recall hearing this somewhere: “When one member of the family has autism, the WHOLE family has autism.” No, that doesn’t make us all autistic, but we all suffer from it, or benefit from it, or are in some other ways immensely impacted by it.

And today the impact isn’t good. I’m exhausted from being sick and having a sick husband.

I’m pessimistic at the moment, although perhaps I shouldn’t be now that I think about it. For some people the start of a new year brings hope and a new outlook. For Maddie newness isn’t good. New starts aren’t good. She does better when she’s in the swing of things. We just need to get her there.

Forget the new year, then. Forget starting over. Forget change. Just keep going. Keep plugging away.

The January question of the month: “Did you make any resolutions?”

No, I did not. I never do. Maybe, in the end, that’s a good thing. My resolutions aren’t annual; they’re daily. My resolution is always to do the best I can and try to forgive myself. My resolution is to survive the day and then start over the next day. My resolution is to try to keep my cool the best that I can in the face of some extraordinarily challenging circumstances.

Happy New Year? Sure, I guess. Happy New Day? Maybe. Just New Day? Always.

 

Thanksgiving Detour

Chris Irvine, Parent CoachLeave a comment

Thanksgiving almost didn’t include Maddie this year. Thankfully our family knows how to be flexible or she would have stayed home while the rest of us–including the dog–would have enjoyed a nice family day out of town.

The week started with two days of school. Well, one school day in the end since Maddie skipped school Monday but somehow managed to get herself there even though the next day was a Tuesday. Wednesday was a day off, and Maddie devoted herself to Minecraft. She didn’t want to do anything else, and I was happy to let her chill out. I did want her to take a shower, though, in preparation for Thursday. “I’ll do it in the morning,” she said. Yeah, sure.

I got up Thursday morning before anybody else because I had some cooking to finish. Also, with five people living here now, all in need of a morning shower, I knew that getting mine out of the way early was the way to go.

Because I was working in the kitchen, I asked Jake (my husband) to make sure Maddie got up and took a shower. I knew it would be a challenge because it always is. I had woken her up but she hadn’t moved. And after Jake had tried to stir her, I went to check on her as well. There she was, flopped down awkwardly on her bed as if she had just collapsed there. Perhaps she had.

Oh, no. Here we go. 

Not only was a shower off the table, as far as Maddie was concerned, so was going anywhere.  She was going to skip the whole thing.

Oh, hell no, I thought. I am flexible to a fault, but I wasn’t going to let her skip this one. She would be missing cousins she rarely sees, and I am trying to impress upon her the importance of spending time with her grandparents. Nobody’s getting any younger, and her grandparents–on both sides–happen to be among her biggest fans. This was not going to go her way. I felt my body tense and my mind focus on getting Maddie out the door. I wasn’t going to let this go any other way.

Much before I was willing to give in, Jake let her off the hook for the shower. “Just put on a hat,” he told her. I thought she was pretty gross, and I really wanted her to clean up, but he was right. Priorities!

Still, however, she wasn’t budging.

“I want to go to Party City,” she declared. Party City is a party supply store that happens to be located somewhat on the way to my in-laws’ house, where we were headed.

“I’ll tell you what. If you go with us today, I’ll take you there this weekend. I promise.”

“I want to go TODAY.”

“They’re not open today,” I said.

“How do you know?”

“They’re just not. Pretty much every store is closed today.”

I pulled up the number for the store and called in order to prove it. No answer, of course, but that wasn’t enough to convince Maddie. Then a lightbulb moment. “Well, we can drive there and see,” I offered. “If it’s open, you can go in for ten minutes.” Ha! Then we would be in the car and on our way and she would be stuck!

So she got dressed and got in the car and the whole family plus the dog were on our way to Thanksgiving dinner at with my in-laws. Victory!

Party City is a few minutes out of the way, but we drove there anyway, knowing full well that it wouldn’t be open. For a moment my husband tried to convince Maddie that the detour was pointless, ensuring her the store would be closed, but Maddie still wouldn’t concede. And I quickly ended that conversation. I knew we had to go. It was just part of being Maddie’s family that day. A drive out of the way to a store we knew would be closed sounds so useless, but it was the magic that needed to happen.

As predicted, we pulled into an empty parking lot. Maddie still wasn’t convinced. When she could see the lights were off, she finally gave in. Okay, it’s closed. Fortunately, although she was disappointed, she accepted the situation gracefully, especially after I promised her I would take her in the next day or two.

We had a nice long visit with our family. Maddie enjoyed her cousins and the superb homemade macaroni and cheese and brownies that supplemented the usual Thanksgiving menu. She was happy.

That night, as I tucked her into bed, I asked, “Did you have a good time today?”

“Yes!”

I knew the answer to that question before I asked. I wish that next time she doesn’t want to go somewhere I could remind her of her hesitation today and the positive outcome and it would make an impact. But it won’t. I’ll probably have to take a detour to Party City or coax her into the car some other way.

That’s just how it is. In times like this, I’m just grateful that SOMETHING worked. Something, anything.

A New Addition

Chris Irvine, Parent Coach1 Comment

The big news around here these days is that we have an additional member of the household. And, yes, she is human. (Two dogs and two cats is enough, don’t you think?) It’s been a few months in the making, and the day has finally arrived. Our lives are enhanced with the fifth member of our family!

My niece, Rachel, has to come live with us while she transitions from the Central Coast to the Bay Area. She’s a fabulous 22-year-old young lady whom I have adored since the moment it was announced that she was coming to this earth. Of course I’d love her to stay here forever, but I know this is just stopping point on her way to bigger and better things.

Among all the many benefits of having Rachel here, it has occurred to me that this might have a positive effect on our kids’ behavior. My son probably won’t want her to think he’s a jerk, so maybe his teenager-y behavior will drop a notch or two. A friend mentioned Maddie might respond the same way. After all, Rachel and her two siblings have long been the object of my kids’ admiration. They are a trio of fun, lively, loving people. Excellent choices of people to emulate.

But I know better. Maddie loves Rachel and is so happy to have her here. “It’ll be like having a sister!” she recently told me. “And I’ve always wanted a sister.”

Well, I guess that’s truer than I might have originally thought. Do sisters try change their behavior to impress each other? Not in my experience. I have two sisters and don’t ever remember thinking about that!

While Maddie is interested in spending time with Rachel, and wants to share her imaginative costumes and other things that interest her, changing her own behavior just isn’t something that would occur to Maddie. She’s very much a “take-it-or-leave-it” kind of person, for better or for worse.

Rachel arrived yesterday afternoon. Instead of retreating to her room, Maddie accompanied Rachel, me, and the dogs to my friend’s house around the corner for puppy play time. That’s new. She also elected to hang out with us, eat dinner, and help Rachel with a project, all instead of her usual Minecraft time. What a wonderful change! Maddie was engaged and happy, and still cooperative at bed time.

But today we are back to normal. I’m not one bit surprised that Maddie is in bed instead of in the cab on her way to school. I sort of expected this yesterday because of the Halloween festivities. One big night and she can be wiped out for days to follow. So here we are again on a Tuesday (I now hate Tuesdays too), and Maddie simply said “No” when it came time to get up. No “I’m tired” or “I need some more sleep.” Just a flat refusal with no explanation. She has chosen to stay home. The pronouncement has been made. End of story.

Does Maddie care what Rachel will think about that? Apparently not. Of course, Rachel doesn’t actually have a judgment about Maddie. She loves Maddie just as she is. Maybe Maddie knows that. But really I think that whole concept of how she’s perceived by other people isn’t part of her make-up, again for better or for worse.

Maybe next time I should point this out. “Don’t you want Rachel to see what a good kid you are?” I could say. Now that I see those words typed out, I see how ridiculous the concept is. Maddie really just won’t care. Maddie’s initials are MEH. Who knew how prophetic those letters would become? If “meh” isn’t her motto, I don’t know what is. (Okay, once she said it was “Toast is life,” but I think “meh” covers more territory.)

I still have a tiny bit of hope that somehow Rachel will have a positive influence on Maddie. Maybe it won’t be quite so calculated. Maybe Maddie will simply rise up. Maybe there will be something in Rachel that Maddie wants to emulate. Or, more likely, Maddie’s interest in spending time with Rachel will bring her out of her room a bit more. And maybe more social time will somehow help Maddie develop. Who knows.

Maybe Rachel just being her wonderful self will give Maddie some extra confidence, some inspiration, and most certainly a bit more love.

One of the great things about family is how (if you’re lucky, as I am) they get you. That has certainly been true for my kids. Nobody has treated my kids with more compassion and a deep understanding and appreciation than our family.

What somebody else might see as a quirk or a challenge, they see as a gift, something to be celebrated.

So maybe that’s what we’ll all get out of having Rachel around! Just another layer of love and appreciation.

I can’t say with a straight face that I’m not a little excited about shopping with my niece, getting our nails done, planning and preparing meals together, etc. She’s going to be a great pal to have around, although my wish for her is to build a group of friends her age–even though I like to consider myself young (i.e. immature) for my age.

However this all turns out, I know that having Rachel around for awhile is a privilege. We will make the most of it!