teen parenting

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.

The Experiment Continues

Chris Irvine, Parent CoachLeave a comment

In August 2015 I had what turned out to be a knee-slapper of an idea: The school year that was about to begin would somehow be The Big Experiment. Maddie was about to to start public high school as a sophomore after three years at a private special education school, and after a year of battling with her over attendance on a daily basis, and years of thinking and thinking and wondering and planning and getting disappointed and crushed and then reviving myself for the next round, we had decided This Was It: It was either This (the public high school)—or boarding school. The idea behind boarding school was since the kids sleep and wake up AT school, they can’t not GO to school. They’re already there! And that’s what I so desperately wanted for my bright, talented, interesting, lovable kid: to GO to school.  Well, and to not have to freak out every single morning over her refusal. I had felt the years of my life slipping away from me as the stress built up in my body and mind. It really was taking a toll, so something had to be done.

Nearly three years—and another new school—later, I realize how naive and narrow-minded my thinking was. The idea that somehow it would all sort itself out in that defined period of time is absurd to me now. What was I thinking? I don’t know exactly, but let me tell you, it got a whole lot worse before it got better.

I’m not sure how many times my therapist had to tell me that just because going to school was what I would have wanted, just because I thought the social part was important, or just because I really thought going to a dance was an important part of the high school experience, those things would necessarily have any meaning for Maddie. It wasn’t until Maddie basically quit going to school in October of her junior year (2016), and I fully gave in to the concept of her not going to school, that I also fully comprehended not only how differently we are made but also how perfectly fine those differences are.

We worked with the school to complete her junior year’s coursework basically in a home-schooling capacity.  But at the end of the year we had to make a decision. The public school is not in the business of home-schooling, we were told. The teachers and administration had been so accommodating! They had bent over backwards to make things work for us, but they could not continue merely sending home work for Maddie to complete without having her attend at least part of the time. They had revised schedules, reduced schedules, minimized the amount of time she would need to be there, but ultimately it just wasn’t happening, so we absolutely had to take another route.

If you are the parent of a child with special needs, you can imagine my mental state at this point. Every new attempt to make things work is fraught with anxiety because you know it may or may not work and then you’ll have to go through the process all over again. You’ll have to rethink and rework and research and try, yet again, to make the best choice for your child, knowing full well this may be just another attempt in a long line of failed attempts to get it right.

With the help of two consultants, we landed on public online high school for senior year. Online because Maddie could literally do school in bed. Public for several reasons: she would have an IEP and they would have to make accommodations; it follows the state curriculum so she would have a diploma from an accredited school in case she wants to go to college at some point; and it’s free. We still pay a lot of money to the educational consultant who works with Maddie twice a week and manages her workload, so free is a welcome bonus.

And guess what? It’s working! There have been ups and downs, particularly for me. Last summer during a meeting with our consultants, one of them mentioned she thought my motivation was to manage all of Maddie’s schooling for this year. “Um, nooooo!” I clarified. “If I had my choice, I would have literally nothing to do with it.” And I meant that. I’ve had it “up to here” with the stress of it all and would gladly have gone on my merry way and let those two ladies work it all out with Maddie and I could just make her food, badger her into taking showers, and then have fun with her. That sounded perfect! “You all just work this out, and call me when she graduates!”

As it turns out, I have participated quite a bit, but our educational therapist is the Overseer of Things, and for that I am grateful. The stress of the school battle was quite literally killing me and I needed to hand over part of the responsibility to somebody else at least for awhile.

I’ll write more about the experience of online school later, but for now I’ll just say this: What I thought was going to be an experiment with an end date and some sort of answer was indeed an experiment, but one without an end. This whole parenting thing is an experiment. I’m still working on it. We are still working on it. There is a lot of talk about what’s next (that’s another blog entry), and I don’t know what that is yet, but it will be something and then something after that and then something after that. And we will forge on, trying to have fun along the way and not losing sight of the end goal: a content, fulfilled, secure human being. In that part of the experiment, I’m pretty confident we’re succeeding.

And Maddie will graduate on June 14th – her 18th birthday.

P.S. Special shout-out to those who encouraged me to start blogging again. Thank you!

When a Mole Hill Really Is a Mountain

Chris Irvine, Parent CoachLeave a comment

This week I think Maddie grew up a little. Or maybe she was just acting crazy. We shall see.

Sunday my wonderful teenage son was apparently doing tricks with knives when his finger and a sharp blade had an unfortunate and unexpected meeting. My first clue was his voice coming from his room: “MOM! BLAH BLAH BLAH BANDAGE!” I’m sure what he actually said was, “Mom, get me a bandage!” or some such thing, but at least I heard the key word. I rifled through our always (unfortunately) disorganized box of first aid supplies and found a nice thick gauze square and ran downstairs. Sure enough, there was a rather bloody finger and a pretty upset guy.

After a minute or two of trying to gauge the situation, we decided a trip to urgent care was the best coarse of action. I ran downstairs to tell Maddie, who was in the shower (woohoo!) and the two of us took off.

After lots of waiting around and a rather uncomfortable session with a needle full of lidocaine and then five stitches, we returned home. All was well with the exception of a pretty sore finger.

What I didn’t know at the time was that my son had, in a fit of panic, left the water running in the kids’ bathroom. And the only reason I found out was because of what Maddie told me later.

“When you guys were gone,” she said, “I noticed the faucet was still on and then I noticed water everywhere. So I turned it off and cleaned up all the water and left the towels in the tub.”

Oh. My. God. She cleaned it up and then, like the genius she is, put the soaking wet towels in the tub so they wouldn’t ruin the floor. I’m not sure who else in my family besides me would have done as well. (No offense, guys, if you’re reading this.)

I was floored. That sounds like such a trivial thing, really, but in my house it’s not. Maddie is so capable of so many things, but she’s not always great at cleaning up (hilarious understatement) or following through. I was both surprised and gratified.

When she was young, she once decided to make the whole bathroom into a pool. She put a towel up against the door and flooded the tub until she got her wish. Unfortunately, that water eventually had to go somewhere, and I don’t know about you, but we don’t have a drain in the middle of any of our bathrooms, so the “somewhere” was basically “everywhere.” All over the wood floors in the hall and into the next room. Ugh. Actually I think she did that twice. At the time, and for years afterwards, her plans tended to be rather short-sighted. If something sounded like fun, that was really as far as she needed to think before she proceeded to make it happen. She used to dump out entire Costco-size $50-bottles of my fancy shampoo while she took a bath too. Those times provided my earliest data that no, in fact, my head would probably never ACTUALLY explode, because I’m sure it would have then.

Of course all our kids have done head-scratching things, as evidenced by all the photos I see on Facebook of kids smeared in diaper rash cream, or art-wearing babies and their toddler sisters standing next to them holding Sharpies. The problem was Maddie was no longer a toddler—not even close—when she was purposely flooding the bathroom without a thought as to how to dispose of the water.

But now she is seventeen. Things are bound to change. And they have. I still find myself having to coerce her into taking showers or brushing her teeth. The upcoming school year remains an empty page, too. I’m not especially confident that removing the “going to” part of attending school will be the solution, but we have to try something. Having ADHD (which is part of an Asperger’s diagnosis) doesn’t mean a person can’t focus on anything. In fact, if she comes up with a duct-tape project, I dare you to try and stop her. But writing a paper on a subject she doesn’t find interesting, or doing multiple math problems that seem to repeat themselves, just aren’t particularly motivating for her. I can’t remember a time when she announced, “I have homework” and then got it out and did it. Most years I had to sit next to her just to keep her focused. I didn’t necessarily have to help her, but rather just keep her on track.

So, here we go again, I keep thinking to myself. It’s still school, after all.

Yesterday her tutor Kim came to pick her up for lunch. Kind of a “reacquaint and start preparing for the new school” kind of a thing but without any work or expectations. I had to leave about 90 minutes before Kim’s arrival. The night before that Maddie and I had been in the hot tub when I suggested she just get straight into the shower after that since she was already wet. “My body is too tired,” she said. I tried to convince her of my genius idea, but she was adamant. Instead, we hunkered down to watch The Incredibles for the gazillionth time (it’s been years, though, to be fair). But before I gave up on the shower thing, I talked to her about making the decision. So often she promises to do something in the morning that she doesn’t feel up to at night, and then bails out in the morning as well. That can go on for days, as her hair gets greasier and rattier and her teeth yellow and her BO hits Code Red levels. But I also have noticed that when she’s really committed to something, she’s quite reliable. The problem is in the committing, and only she can know if she has truly committed. So I thought I’d talk to her about that.

“I believe in you,” I said. “When you decide to do something, when you set your mind to something, you always get it done. The key is in the deciding. You have to decide right now that you’re going to do it, I mean REALLY decide. And then I know you’ll do it.”

She nodded in agreement. “Oh yeah,” she agreed. “When I set my mind to something, you couldn’t stop me.”

And then finally, “I’ve decided,” she announced. Of course you can never really know what’s going on in somebody else’s mind, so I just had to accept her commitment and move on.

“Well, then I know you’ll do it,” I said.

The next morning just before I left for my morning appointment, I woke her up. “You’re going to take a shower, right? Kim’s coming at 11:20.”

“Yup,” she said, still under her covers. Oh, I’ve seen this many times. The insincere affirmative answer and then the predictable outcome.

There wasn’t much else I could do at that point, but I knew my appointment would be over by 11:00, so I told her I’d call her later. Honestly I wasn’t expecting much. Historically meetings with Kim go like this: Maddie doesn’t get out of bed, so Kim has to somehow talk her into getting up and getting dressed and it’s a whole long scenario from which I typically remove myself (as in, leave the house) mainly to preserve my sanity.

As planned I called just after 11:00. “I’m just calling to remind you to get up,” I said, clearly thinking she’d still be in bed.

“I showered and I’m dressed,” she announced.

I probably said, “WHAT?!” but hopefully I was more composed. If life were a musical (which I always wish it were), I would have broken into a song and dance for sure. Something glorious and uplifting.

These are the moments I feel tears of joy pooling in my eyes. My heart is full and I feel hope. The hope I felt when I saw those soaking wet towels in the tub. She got herself up and she took a freaking shower! Who IS this kid?

And then, She can do it, I thought to myself. And by it, I meant life.

All the thinking and effort and talking and more thinking I put into this parenting thing is having an effect. She is growing and maturing, and although she’s younger in most ways than other kids her age, there is progress.

So many parents I know have just taken their kids to college for the first time or have that next chapter of parenting in their sights. They’re nervous about how their kids will fare. Will they be able to care for themselves, the parents wonder. Will they feed themselves OK? Do they know how to do laundry? What happens when they get sick?

“Don’t worry,” I tell him. “They’ll figure it out. They always do.”

Will Maddie “figure it out?” I go back and forth on that one. But right now I’m feeling a bit more optimistic. She is figuring some things out. She might be 30 when it all clicks. She might stay with us forever. We don’t know. But moving forward sure feels good.

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!