high school

Tuesdays and Thursdays

Chris Irvine, Parent Coach2 Comments

And here we are again. The cab driver has come and gone and Maddie’s still in bed. She went to sleep on time. I even thought she had an incentive: She wants to stay up to watch The Flash tonight, and I said she could as long as she did a great job today. Her very first opportunity to prove herself has passed. And she failed.

I woke her up in the usual manner, stayed there and chatted for a few minutes, put everything she needed to get dressed on her bed, and went upstairs to make her breakfast and lunch. On my second visit to her room, I told her it was my last warning for her to get up. She would need to get going or the deal was off. She nodded and said, “Don’t close the door.” I assumed that meant she was heading to the bathroom shortly.

Just before pickup time, I returned to her room after packing her lunch and water bottle into her backpack. She was still cocoon-wrapped in her blanket.

And then it happened. I lost it. I couldn’t be nice and patient anymore. I’m done. I’m out. I grabbed her blanket, yanked it off her, and yelled, “Maddie! What are you doing?!”

“Lying in bed,” she answered dryly. Duh.

I don’t remember what I said after that, but I know I was yelling. My patience and kindness aren’t readily available today. For some reason I haven’t been sleeping well for a few weeks, and I’m feeling it. Last night I took melatonin, which usually works, and slept on the couch where nobody would disturb me, but somehow our puppy ended up in my space and, although he’s normally a good sleeper, last night he woke me up a couple times. I’m desperate for a good night’s sleep. It’s like the days of having an infant.

Especially today. Except that my child is almost as big as I am. And she can talk back.

When Maddie was a baby, I thought, “How could I ever be mad at her?” It was unfathomable. She was so sweet and innocent and helpless. Then when she was about two, I realized I could get plenty angry at this kid. It takes me awhile to build up to that, but the frustration your child can cause is probably equal to the love you feel.

And that’s where I am this morning. I am at my wit’s end. I don’t have a solution. Just when everything seems to be going great, there’s a major stumble. A roadblock. An insurmountable problem that comes seemingly out of nowhere. Like Mount Shasta. Except Mount Shasta’s pretty to look at.

She was doing something on her phone, so I tried to take it away from her, but it was turning into a wrestling match, something I can’t win anyway. Maddie is a lot stronger than she looks. Plus, it’s not really healthy to have a physical altercation with your kid, so I gave up. Maddie would never give up, and I realized that, too.  She would be good under interrogation. Oh, yeah? You think that’s going to work? Think again, mister!

The boarding school idea popped into my head. How many times can I bring that up without actually doing anything about it? It’s meaningless at this point, I think. She doesn’t believe we will send her away. And I don’t want to send her away. It’s not a punishment. It’s a white flag. I give up. I give in. I am not capable to fighting this battle anymore. And today it feels like a battle.

“Why are you doing this?” I plead.

“I don’t like Tuesdays and Thursdays,” she declares.

“Well, you can’t just skip them. That’s forty percent of school!”

Huh, good point, apparently. But it doesn’t matter how good of a point I make; Maddie has decided. 

Is there such a thing as a stress aneurism? Because I’m about to have one. I tell her again about the boarding school thing. “I’m serious,” I say. “I wouldn’t be giving up on you. I’d be giving up on me. Apparently I can’t teach you what you need.”

“Well, if I go to boarding school,” she counters, “I won’t get up and go to school there either, and they’ll just send me back.”

“Maddie, there are schools where people specialize in this kind of thing.”

“Huh,” she says. She is digging in her heels at this point. “They haven’t dealt with me before.”

This apparently has turned into a battle, and she is going to win no matter what.

“Really, Maddie? What are you going for here?” I ask. “You want everyone to just pass you off to somebody else? Really?”

This probably isn’t a good road to take, this particular line of questioning. But I’m just out of ideas. It seems to me she doesn’t take skipping school seriously, so I feel obligated to change her attitude. Somehow or other I need her to see that school isn’t optional, and that there will be consequences for her choices.

My body is tense and my brain is shorting out. I can’t do this for one more minute. I get my husband up to help me. I’m out of ideas. I’m out of patience. I feel powerless. I am powerless.

——————-

Fast forward 30 minutes.

My son has a broken finger and has a cast. He usually rides his bike to school but for now I’m driving him. Just as we are about to depart, I hear my husband shout, “She’s almost ready!” A miracle has occurred. The one thing that sometimes works in times like this is role playing, using characters from whatever Maddie is into at the moment. Right now it’s that anime show she loves so much. I suck at role playing. My husband doesn’t love it, but he’s better at it. And sometimes it works. It’s absolutely absurd that we should have to take on other characters to motivate Maddie, but we do the absurd all the time if that’s what’s required.

So now we run out the door, up two flights of stairs to the car, and high-tail it to the middle school. Henry leaps out at his first opportunity, and to my relief, we are on our way to high school. Maddie will be a bit late, but that’s okay.

About three minutes later Maddie announces, “Just so we’re clear, I’m not getting of the car when we get there.” You have got to be kidding me.

It’s 8:15 and I want to go back to bed until today is over. I can’t do this for one more minute. I consider just turning around and going home. What’s the point? I wonder. Seems like a waste of time to drive halfway across the county for a disappointing and frustrating outcome. But I’m not quite ready to give up. Oh hell no. She’s going to school.

So I tell her we are going, and if necessary I will go to the office and get someone to help me. I’m serious. I will wait there and talk to whomever I can until this matter is sorted out. I am not leaving until Maddie is out of the car and checked in at the office.

It’s her phone that finally saves the day. I have left my own cell phone at home. So a number of times Maddie has called home to talk to her dad. As we are arriving at school, I ask for her phone so I can talk to him. I thank him and hang up. Then I take her phone and slide it into my purse as I’m getting out of the car.

“My phone!” she panics. “Can I have it? I need to write my story for school!”

“Is it due today?” I ask. I am wondering now if late homework is factoring into today’s events.

“I don’t know.”

“Well, you can finish it at school. It’s better to turn in homework late and be at school.”

“Can I have my phone back?”

“Once you have checked in at the office and are leaving for class, I’ll give it to you.”

And that’s how it goes. I walk her to the office, and she checks in, having to admit she is late because she “slept in,” although that’s not really the truth.

Can I quit now? On days like this, I feel like I’ve done a full day’s work by 9:00 in the morning. I’ve been up for 2 1/2 hours. A very long 2 1/2 hours. And I’m tired.

Now, as I’m writing this, one thing becomes clear. Words aren’t going to solve this problem. I could talk about this for a week straight and it’s not going to change her mind. She needs concrete information, and that is going to come in real-life consequences. So for now, I need to see what I can accomplish with the administration at her school. Somebody over there needs to make a point. Maybe it’ll work, and maybe it won’t. But I can’t do this alone.

Today will be about communicating with the school and doing a lot of deep breathing. Maybe a nap. I need to figure out how to relax now. My head hurts. I feel like crying, but I can’t. It would be such a relief, but the tears aren’t there. I just feel heavy and tired. Stressed out and defeated. I’m not sure what the appropriate way is to express all that.

Tomorrow should be easier. It’s a shorter day, and on this particular Wednesday, there is a series of entertaining events scheduled. I hope she sees that as a reason to go to school, not another reason to stay home. I hope I get some sleep. I hope I am better equipped to handle whatever comes my way.

A Little Time Off

Chris Irvine, Parent Coach1 Comment

You may have noticed I haven’t blogged for several days. It’s kind of a good news/bad news thing.

The good news is I had the company of my sister and her adult niece for the past few days, and nothing fills me up like spending time with those ladies. It was just days of the kind of girly fun I don’t get to have with Maddie, who would rather do just about anything than shop and get her nails done. Plus, I’m very close to my sister and her kids, so I was in heaven. I even went out for the evening with them once, having some true time off while my husband was home getting everyone to bed.

The bad news is I was just too tired to write. Tired of parenting. Tired as in “I-can’t-do-it-one-more-day-so-I-give-up-for-now” tired.

And that is because Maddie hasn’t been going to school this week. Well, okay, she missed two days, went one day, and is now in bed again. She’s not one hundred percent healthy, that’s for sure. Maybe she has a mild cold, maybe allergies, but something is going on in the sinus area. Nothing dramatic, but she is not completely well.

Nor has she appeared especially sick.

But this week I just didn’t have the fight in me. I tried some gentle encouragement and even, today, a reminder about the purpose of this year. But that was it. Once I was convinced she had made her up mind, I quit. I just can’t do it. I can’t fight with her, or wrestle her pants on her, or even make that big of a deal about it. I am depleted and temporarily defeated.

So I guess we’re both taking some time off this week. For me, it’s time off from the emotional and mental struggle, and even some time off from thinking about it all. So everything took a back seat, including my writing. As much as I love writing this blog, and as gratifying as it is, it does force me to spend some serious time pontificating about my situation and focusing a bit on my daily struggles, and this week I just needed to forget about it. Yesterday, when my moment of victory arrived after getting both my kids to school (the other one just broke his finger, so both of them were home the day before yesterday), I was happy. I was triumphant. When both my kids have gone to school, I figure everything else I accomplish that day is a bonus. Laundry? Bonus! Dinner? Bonus! Making my bed? Bonus! I deserve a brownie!

So today, there is no bonus in play. I will take my son to the orthopedist for his fractured finger, and then take him to school. Then I have my weekly therapy, which has been on hiaitus for a few weeks. Seems like a good time for that. Apparently I have some things to discuss. And then I do get a bonus – a movie with a new friend. The trick will be enjoying myself, not because of the company (which will be excellent!), and not because of the movie choice (rave reviews!), but because I’ll be sitting there feeling like I failed today. Okay, maybe not failed, but didn’t accomplish the single most important thing I needed to today. My number one job: getting my kids to school. Okay, maybe it’s number three after keeping them alive and loving them. But those are easy. The whole school thing is hard, and I never know how it’s going to go.

I also blew it by forgetting about this morning’s agenda and waking up my son at the normal time instead of letting him sleep in. We’re going to his doctor appointment first, so we had a good 45 minutes extra this morning. So I got up at 6:30 for nothing. That stinks too. I really could have used a bit more sleep.

So in the absence of school attendance success, I have now decided on my goal for today: to be happy. To be grateful. To be proud of all that we do accomplish around here. To recognize Maddie’s strengths and not focus on her challenges. To be positive about the future. To accept the different circumstances we have as a family and embrace the good that comes of them.

And honestly, that gratitude is not hard to come by for me. I am a lucky, lucky person. I know it every day. I have a loving family, both in the one I have created and in the one I come from. I live in a beautiful place. We have everything we need, and then some. We have the resources to get all the help we can think of for Maddie. I even get a weekly therapy session to help me cope. Talk about a luxury!

As for my gratitude for Maddie, that’s easy too. Most of the time I’m in awe of her.

Yesterday a friend stopped by to borrow something, and she’d had a challenging day. I don’t know if Maddie sensed my friend’s emotional state, but she offered my friend a hug. And Maddie is a world-champion hugger. Big, tight, meaningful, long hugs. Often just at the right moment. My friend’s face and body relaxed. “I needed that,” she said. And she really had needed that.

So even though Maddie isn’t going to school today, I am still grateful for her. She’s a remarkable human being, full of compassion and love, empathy and intuition.

I will give her the day off and I will take one too. A day of from worrying, a day off from guilt, a day off from fear. I will enjoy my day, knowing I have raised a kid who may not be a devoted student, but who is a wonderful human being. I will give her a big, tight, meaningful, long hug and tell her that I love her.

That One Time I Really Screwed Up

Chris Irvine, Parent CoachLeave a comment

I try not to have regrets. My philosophy is I am grateful for the life I have, and everything that has ever happened to me has led me here, so I shouldn’t regret any of it. All my successes and failures, all the joy and all the sadness, have led me here to this moment. So why would I change anything?

But here’s something I really wish I had done differently, very very differently. And that’s because my mistake cost us probably three years of services at school. I pass this on to any of you with a special needs child. Please learn from my mistake.

Each and every year, from kindergarten to through fifth grade, I would be called in for an SST meeting for Maddie. SST stands for Student Study Team. The child’s teacher is the one who calls for this meeting, and the participants are everyone who would be involved in an IEP or Individualized Education Plan meeting (that’s an official meeting to discuss the goals for the student for the year and what services will be provided and which accommodations will be made). The participants typically include the current teacher, the principal, the school psychologist, the school counselor, maybe the speech teacher and even the school’s occupational therapist. If there is an issue with academics or behavior that is not being properly addressed through other avenues, this is an opportunity for everyone at school who can help (and the parents) to brainstorm and make a plan.

Parents are invited, but if they don’t attend, the meeting will happen anyway. And each and every year I went. And each and every year we had the same discussion: why does Maddie have trouble getting work done and what are we going to do about it? Often everyone would look at me as if I had some magical answer. I looked at them an shrugged. As if! Aren’t they the experts? Had they not, in all their combined years of teaching children, ever encountered a kid like Maddie? Much to my frustration, it sure seemed as though they hadn’t.

And each and every year I left that meeting having done a heroic job of holding in the tears. I usually made it to my car before I let them flow. And they weren’t tears of joy. One particularly difficult meeting took place when Maddie was in second grade. The head of the special ed department, a very experienced and well-respected German woman who had actually started the program at this school decades before, used words like “odd” and “stubborn” to describe my child. It was terrible. Isn’t she supposed to have a special knowledge of and compassion for kids like mine? Didn’t she realize that this stubbornness, while undeniable, was a symptom of a larger problem and not just the behavior of a defiant child? I pointed that out every year, but nobody seemed to get it.

And this is at a school that’s known for its special services. It’s a public school, though, and even thought it’s exceptional in many ways, it has limited resources for kids like mine. The kids who receive services are typically either struggling terribly in math or reading, or have more severe cognitive delays. Maddie always tested very well and was clearly bright. But her varying performance day to day was actually a detriment to our cause: because on some days she was so capable, it seemed to everyone that she ought to be just as capable every other day as well. She must just be stubborn. She was stubborn, indeed, but at least I could recognize the source of her inflexibility at that time was the stress she experienced just trying to cope with a normal school day. She was unequipped for the rapid transitions that occurred each day, and the social requirements were far beyond her development.

In third grade, Maddie had a teacher that was new to the school. She had been teaching for over a decade, however, and was the first teacher to say, “Let’s get this kid assessed. She needs help.” She might have even used the word “ridiculous” in reference to the lack of services Maddie was receiving.

So after that year’s SST, the school began the assessment process. The school psychologist performed a number of tests to make her own evaluation, and she gave questionnaires to the parents and the teacher that covered a wide variety of behaviors. The goal was to identify a particular problem area that might qualify the child for services.

After several weeks, we reconvened to go over the results. (Keep in mind, this was a year before we had an autism diagnosis from her psychologist.)

The big reveal: She did not qualify for services. Her speech was fine (and a speech issue is usually a requirement for most services). And there was no diagnosis of autism. And that was because of me and me alone.

It turns out the questionnaires given to the psychologist, the teacher, and parents all have to match up reasonably well. If one person reports a very different set of behaviors, the other two questionnaires don’t hold up. And I was that one person.

I was heartbroken. We walked out of that meeting with no more help, no more answers, no more anything than we had when we walked in, and it was all my fault. Talk about regrets.

I think I was just so used to my own kid that some of the behaviors that others saw as outside of the norm seemed kind of normal to me. What did I know? She was just Maddie. I don’t think I was misreporting anything on purpose. I don’t think I was trying to paint a picture of Maddie that was rosier than reality. But that’s exactly what I did. And so we continued on the same path for the next three years, with Maddie struggling to live up to her potential at school, and with teachers who wanted to help her but didn’t know how.

When Maddie started flailing terribly in sixth grade, I had another chance, and I took it. Maddie was going to be the neediest kid they’d ever seen. Well, that’s an exaggeration, but I most certainly made sure that if I was on the fence about something, I erred on the side of “problematic.” I was honest. Brutally honest. Honest with the school and honest with myself. And no way was I going to let that travesty happen again. Remarkably (haha, not really), this time my reporting was more on par with that of the teacher and psychologist.

As a result, she finally got what she had needed all along. And after a disastrous entry into middle school, Maddie began to flourish, or at least cope better than she had been. We ended up moving her to private school the following year, ironically only after we had finally got her situated properly at the public school. But I guess at that point I saw more clearly what she needed.

If there’s one thing I learned from our experience, it’s that any time I’m revealing any of Maddie’s challenges at school, my goal has to be to get her services. I’m not worried about how she comes off on paper, except when it comes to getting her services. I wish I had undersold her abilities rather than the opposite. It didn’t help anybody.

Perhaps I was in denial that first time. I don’t know. But because of what I consider to be one of my biggest failures as her mother, it is my mission to tell everybody I ever meet who has a young kid struggling at school, and who may be a candidate for extra help:

Do not overstate your kid’s abilities. Do not worry about the picture you are painting of your child. Your goal is to get the help they need. Forget trying to impress anybody. Forget making excuses in your head for why your kid is a certain way. And don’t be in denial yourself. Face the reality of your child, and fight fight fight for help. Expect and demand everything that could help your child.

I know I recently said I wasn’t in the business of giving advice. Look at this not so much as advice but wisdom gained from my own mistakes. I hope somebody else can learn from mine and save themselves some time.

Here’s another regret of mine: I wish I had been a squeaker wheel. That’s a topic for another time.

Terrible Morning Turns Into Okay Day

Chris Irvine, Parent CoachLeave a comment

A brief update for you all:

Sometime shortly after I posted Monday morning’s blog, Maddie decided to go to school. It was about 11:00. She had missed half the day, but on the other hand, she would be GOING for half the day, so I was all for it.

After four and a half hours of struggling with her, I wasn’t exactly ecstatic, though. I was just exhausted by that point. I guess I was relieved, though.

So we got into the car and drove the 25 minutes to school. She expressed concern about what was going to happen when she arrived. “Is someone going to talk to me?” she wondered. I didn’t know the answer to that. I knew she had to check in at the office, but I really didn’t know anything beyond that. I suspect a discussion about her attendance is impending. She’s had enough unexcused absences to warrant concern. But I’m letting the cards fall where they may. That’s the main reason we moved her out of the private school, after all. I’m not going to interfere.

We had a pleasant ride to school. Might as well make the best of the remainder of our day, I figured.

We finally arrived, and when Maddie was just about to get out of the car, I had a realization.

“Maddie, I wish this morning had gone better,” I said, “but I’m proud of you for turning it around. I know that’s hard for you.”

I was so glad I both thought of that and said it out loud. She needed to hear it. Small victories, you know. Maybe the morning sucked, but the typical story is that she decides she’s not going to do something, and she’s stuck in that mindset. It’s frustrating as all get-out, but transitions are probably the most commonly difficult challenges for autistic kids. And she somehow transcended that challenge.

Maddie got it. She thanked me. She looked relieved. I knew she was probably nervous for what awaited her when she got to the office, but she picked up her backpack and held her head high as she said goodbye.

It really was a terrible morning, but sometimes it’s those challenging times that bring about the best moments. I remembered to praise her for what she did right (yay for me!), and she was proud of herself, too (yay for Maddie!). She did something almost impossible for her. And now we both know it’s not, in fact, impossible. It will still be hard for her to redirect herself, but as I always say to my kids, “It might be hard, but hard is okay. Is it impossible?” I ask that knowing, of course, that whatever is in question is NOT impossible.

I don’t know what’s in store for tomorrow, but I hope that whatever it is, I can find something to be thankful for.

The Reason I Write

Chris Irvine, Parent CoachLeave a comment

Recently I was thinking, after posting the story of yet another challenge with my daughter, about the content of my blog. I started this project as (1) an avenue for sharpening my writing skills and (2) a way to express myself in the face of some difficult circumstances. Once I decided to write, the subject was obvious. This is the thing I have to talk about.

It just to happens that the subject of my blog–parenting my Asperger’s kid–is fraught with a tremendous amount of emotion. Much of that emotion is sadness, frustration, and anger. Some of it is also hope (as you know, I’m focusing on that), admiration, and gratitude. My days are unpredictable. I think a lot, I feel a lot, but mostly I just cope. And I try to be optimistic. And I often fail at both.

This is definitely the story of my daughter and me, but I hope it’s much more. Because once this blog got rolling, I found my true purpose. And that is to speak for all of us parents of autistic kids. Or parents of special needs kids in general. And sometimes even just parents.

What I hope to do is be honest and open about this aspect of my life, to share my victories and defeats, my successes and failures, my moments of genius as well as all the times I royally screw up. I want you all to feel less alone in your struggle. I want the rest of my readers to have more insight into the life of a special needs parent.

So when I tell the story of a particularly terrible morning, it’s not to get your sympathy (although that’s a nice side benefit). It’s to illuminate the kind of struggles the parents of autistic kids might face, to lay bare our frustrations and fears.

I also realize that kids on the autism spectrum are individuals, and that our stories are unique to us. Some kids on the spectrum are very motivated but have social anxiety, the opposite of my daughter. Some kids are rigid and angry. Some kids are emotionally fragile. Maddie is easy-going and happy, stubborn and impossible to motivate. Some parents are more organized than I am, some have been ferociously fighting for their kids since they were toddlers, some have yet to fully recognize what they are dealing with.

But the overarching story is the same: Our kids reside at least in some ways outside of our society’s expectations, and they struggle to fit in. And we as parents have anxiety over how to help them now, and what their lives will look like in the future–next week, next month, next year, next decade. We love them fiercely, we want to both push them and protect them, we feel their pain and rejoice in the tiniest of victories. We feel alone much of the time, as if a chasm exists between us and other parents with only typical kids. We know they don’t know what our lives are like. We know they can’t. It’s a unique experience, parenting an autistic kid. Those of us who do it need each other. And this is why I write.

But something else miraculous has happened in the process of writing my blog: I am better able to clarify my own thoughts and feelings in a way I really hadn’t before. When you write things down (hello, journaling!), you take what might be murky ideas and emotions and put them into words. And it turns out words are really helpful! I might start a blog entry feeling defeated and sad, and by the end I’ve decided to forgive myself and be happy, to focus on gratitude and hope. What a gift!

The truth is that every day that I write, I am finding those things anew. I wish I could say these little daily epiphanies stick with me and that I am suddenly transformed. Nope. It’s a journey, a process, a lifetime project to figure out what to do and how to do it and how to find happiness and joy and cope with fear and hopelessness and frustration. And each day I work on those things. I write them down here, hoping the writing will help all my mental lightbulbs stay illuminated at least a little bit. Maybe a bunch of little lightbulbs will accumulate and eventually light my path so that eventually I can see very clearly where I’m going. We shall see.

In the meantime, I hope my blog is helping some of you. It is certainly helping me.

Life Lessons on Friendship

Chris Irvine, Parent CoachLeave a comment

Recently I wrote about the stark contrast between the social life of my 13 year old son and that of my daughter. It breaks my heart sometimes.

And then this happens.

Maddie has a friend and classmate named Jordan.* She went to the private school with Maddie and then, at the last minute, showed up at the public high school as well. She’s a very sweet girl with wonderful parents. They are making a real effort to encourage the friendship between these two girls. I am so grateful.

This weekend Jordan’s mom reached out to invite Maddie to spend the afternoon swimming at their house. Not only are these people lovely, but they also have a pool! I call that a win!

At first Maddie was excited. She said, “Well, I do like Jordan. And I do like to swim!”

How wonderful, I thought. Finally Maddie has an invitation to do something with a friend.

And then, this morning, my son decided he wasn’t up for an outing he had planned with a friend. Apparently the idea of bailing out seemed appealing to Maddie as well. So now she wants to cancel. She likes Jordan, but she’s not up for an afternoon of socializing.

“You have no social life!” I told Maddie. “This is a chance to get together with a friend!”

And then she was offended. But that is the truth. The ONLY person she really wants to socialize with is her cousin. She is a lovely kid, and she and Maddie are the kind of best friends all girls should have. They’re kind to each other, and they can be fully themselves. And since they’re cousins, there is a lifetime connection that will always be there. I am so grateful for their relationships.

But I want Maddie to branch out. I want her to be able to make other friendships, especially with girls. I know that she mostly spends time with boys at school. She always has, and I have long suspected it’s because they’re less socially sophisticated and therefore less demanding. She doesn’t have to navigate the complexities of girl friendships. And in a way I can appreciate that.

And then when school’s out, she retreats into herself. She watches her anime show, she plays Minecraft, she spends hours making swords, she’ll go out into the open space behind our house and pick flowers or blackberries. That’s what makes her happy. And all of it is solitary (actually Minecraft often involved online friends, if that counts).

So here I am, very anxious about Maddie’s social life. I want something for her that apparently she doesn’t want for herself. I don’t know what to do with that. Should I help her develop her social skills with girls or just let her be? Am I trying to force something that’s not important or meant to be? I don’t know the answer to that.

I believe that if she went to Jordan’s house today she would have a great time. Jordan’s mom would ensure a good time. She’s that kind of person.

I often try to make plans for Maddie, with her consent, of course. She resists. She’s not interested. Ever. She can’t seem to overcome the idea that even if a friend has very different interests, they can manage to be friends and have a good time. Or even that if she has committed to something, keeping her promise is important. She doesn’t want to hurt anybody’s feelings, but in the moment her own desires are taking precedence. I’m not comfortable with that.

The word autism comes from the root “auto,” meaning “self.” Her system is focused on “self.” I don’t mean she’s selfish or self-absorbed, exactly, but people with autism have a whole system that is very self-oriented, which is why they often function so well alone and may have difficulty in social situations.

Dictionary.com says autism is “a pervasive developmental disorder…characterized by impaired communication, excessive rigidity, and emotional detachment; a tendency to view life in terms of one’s own needs and desires.”

I don’t think of Maddie as selfish necessarily, but I can’t really disagree with any part of that description. She’s not incapable of empathy at all (in fact, she can be remarkably empathetic sometimes), but it’s not necessarily her first response.

Well, hello! In the middle of my writing, Maddie came up with a great idea. She had called and left a message for Jordan. It was an excellent, heart-felt apology about having to cancel today. She said she was tired from a poor night’s sleep (true) and was terribly disappointed about having to cancel, and wanted to get together another time instead.

And then we had talked for a few minutes about friendship. She is concerned because she and Jordan have very different interests. Maddie likes swords and Star Wars and anime. Jordan likes makeup and other girly stuff. (I am reminded of the time years ago when I took her to Toys R Us, and she specifically said, “I do NOT want to look at the girly stuff.” You know, Barbies and everything else located in the explosion of pink.) It can be challenging for an autistic person to see beyond the obvious sometimes and go deeper.

But I told her that it wasn’t until I was in my forties that I realized something important about friendships. It is unlikely that a single friend will meet all your friendship needs. I might have a shopping buddy who loves fashion as much as I do. And then another friend who parents just like I do, so we can talk about that. I have a friend whom I can call to help with the dogs, but maybe my other friend isn’t a good candidate for that. And another friend whom I go to for advice. We all have deeper connections, commonalities that go beyond what we like to do with our time. That’s what ultimately binds us together.

Those are some deep thoughts for an autistic teen. I realize sometimes when I try to impart life lessons to my kids, they may or may not be listening. Or they might hear the words, but the deeper meaning might not land. Not yet. So I say what I want to say anyway, knowing this great wisdom may or may not have any impact right now. It’s worth a try, I figure.

And then Maddie had an epiphany. We have two extra Giants tickets for next Saturday. Why doesn’t she invite Jordan and her mom?

YES. That is the perfect solution. It’s a way to spend time with her friend doing something they can both presumably enjoy. It’s a fun outing, an adventure. It’s a way to connect with another person over something completely outside of yourself. An opportunity to bond without the superficial differences getting in the way. That is how you build a friendship.

So she made the phone call and left a message extending the invitation. Even if it doesn’t work out, something magical happened today.

I still don’t know what will happen next time a social invitation comes Maddie’s way. This is not a linear path we’re on. There are leaps forward and stumbles back. There are surprising moments of greatness and devastating disappointments along the way.

But the net result is this: I’m proud of my daughter. She’s a good person. She’s growing up. I’m working hard. Sometimes my parenting yields instant rewards; most often I just put in whatever effort I can manage, and then hope our kids grow and mature, or that I continue to learn how to let go of the outcome.

*Jordan is not her real name.

An Exercise in Futility (perhaps that should be the title of my book)

Chris Irvine, Parent CoachLeave a comment

Here’s a big truth for you all:

Today I have one kid who’s home sick for the fourth day in a row. He misses a fair amount of school. Last year it became a problem, in fact, although he  did well in his classes anyway. He just wasn’t well. But I get so stressed out about the missed school days, regardless of the reason.

And then I have the other kid, who just refuses to get up.

So my success rate today is 0%. That’s how I feel. Zero percent successful.

I don’t know what else I can do, though. Once your kids get to a certain age, or size really, you can’t physically force them to do anything. No more carrying a flailing kid up to the car. It’s all mental. ALL OF IT. And today I’m losing the battle.

It’s 9:09. I can keep trying to get Maddie off to school, but it’s a rare day that she can turn herself around and get going once she’s late. I hate giving up because I don’t want her to be that relaxed and happy about missing school. I want to be relentless. But I’m not sure I have the stamina to keep pestering her all day. Even thinking about this makes my head pound. This is not a good day for me and how I feel about myself as a mother. I try so hard to stay positive and optimistic and give myself credit, but I’m not feeling it today. I feel, once again, defeated.

I’ve been hearing a lot of grumblings lately by my friends and acquaintances with 12 and 13-year-old kids. Preteens and teens will push you to your limit. Apparently that’s normal. So I’m not under the delusion that only parents of special needs kids have rough days. Or feel overwhelmed or helpless. Or feel like they’re failing.

I feel like that with both my kids at times.

When you decide to have a child, you are embarking on such a potentially harrowing journey. Each day is an unknown. You can put everything you have into parenting, all or your mental and emotional and physical energy, all the skills you learned from your parents, all the tactics you can learn from books, all the advice from your friends, all the enlightenment you get from your therapist, all the special approaches you learn from your child’s occupational therapist and psychologist and teachers. And then you can still feel as if you have no idea what you’re doing. Or you might think, “It feels like I’m doing the right thing, but it’s still not working.” That’s maybe the worst. The futility of it all.

10:10 a.m.: About 20 minutes ago I made another attempt to get Maddie up. I patted her back firmly over and over and said her name about 50 times. “Maddie, Maddie, Maddie, Maddie, Maddie, Maddie…” I was trying to annoy her into submission. No response. Then I remembered she has a really nice bluetooth speaker in her room, so I turned it up loud and took her phone. I’ve been playing music, switching songs randomly. Still nothing. So now it’s on NPR. Can I bore her into cooperation? I doubt it.

Because for better or worse, submission isn’t really in her makeup. She is a tough nut to crack. You are probably thinking, “Well, you should try this! It works for me.” Guess what? I have probably tried everything that’s not abusive. I’ve tried being overly nice, being flexible, being threatening, being tough. I have tried having her write me an essay about why she should go to school. I have to admit, that worked in one way. She didn’t go to school, but I sure made her day miserable. It literally took me the entire school day to manage that endeavor, with lots of tears and crying and arguing and anger and frustration on her part. I stuck to my guns. I was proud of myself for doing that. But I think I was equally miserable. And that’s really the only thing I accomplished: making us both miserable. I don’t think she learned anything, nor would her misery that day ever translate into changed behavior another day. That’s our challenge.

10:17 am.: Tbe NPR news ended. Now I’ve turned on an NPR podcast called “Alt Latino.” Oh, it’s in English so far. I hoped it would be in Spanish. Maybe that would drive her crazy.

Ha! I just heard the speaker go off. That means she at least got out of bed to walk across her room. I’m sure she’s horizontal again.

She isn’t. She’s sitting up.

“Are you flat out refusing to go to school?” I ask.

She nods. “I’m hungry.”

“I made your breakfast and lunch. You can warm it up.”

Okay, I give up for today. I will keep her screens hidden away. She will surely find something to do to pass the time. I don’t want her to sleep more, though, or she’ll suffer tonight and we’ll be back at square one tomorrow.

Wish me luck, people.

Let’s Be Serious for a Minute

Chris Irvine, Parent CoachLeave a comment

My parenting style is loose and fun. I’m sure I could be more of a disciplinarian, but that’s just not my personality. My typical way of thinking is whatever is funny wins. I’m also a big softie. I like to snuggle and play and give back rubs, and as my mom used to do, absolutely smother my kids with love when they’re sick. Well, my own mom’s style wasn’t quite as snuggly, but she always loved us by doing things for us. You’re sick? Chocolate chip ice cream will make you feel better? Well, then, you shall have it. I say that all the time. Well, then, you shall have it!

Ask our two dogs. If there’s an alpha dog, I’m not it. I’m more of a roll-around-on-the-ground-and-play type of person. They sleep on our bed (yes, two people and two dogs fit nicely on a California king, it turns out), and I wouldn’t have it any other way. It would be better if they were more well-trained. I know that. But I need an alpha to step in and make it happen. It’s just not me. Is there a Greek letter for goofball? I wish.

And most of the time, I think my style works. I’m close to my kids. They’re open with me. We like to hang out together. They both tell me they love me all the time. Those words come easily. I hope they continue to come easily for all the other relationships in their lives.

We’re also the house where the boys come to play. My son’s friends are here often, and I love it. The other moms might say, when they hear I’ve got five seventh grade boys over here, “You’re so nice!” But really I enjoy their presence. They’re great kids and I’m happy they like to come here. I hope that never ends.

And then there are days like today. Maddie won’t get out of bed. She was awake for several hours during the night.

I’m sympathetic. I’ve spent the last 15 years of my life in a state of sleep deprivation for one reason or another. It is a rare morning that I wake up to my alarm without having first been woken up by an animal. For years it was the kids. Now it’s the dogs. Sometimes a cat. Sometimes everybody. There were many years when I would have spent at least some of the night in each bed in the house. I would wear a watch to bed because I never knew where I’d end up in the morning, and I wanted to be sure to know what time it was when I woke up. Sometimes I even ended up sleeping horizontally across the bottom of our bed, my legs tucked under me, because I had a husband and a kid and a dog in the bed, and that’s all that was left. Maybe 1/8 of the bed in the bottom corner. I’d pick up the end of the covers and slide in gently, so I wouldn’t wake anybody up. And yes, I could actually sleep that way. Desperate times, you know. So, if anybody has empathy for a tired person, it’s me.

But I also know about having to get up and do it anyway. That’s today’s mantra…AGAIN. Maddie has a hard time with that concept, as you all now know. “I’m too tired. I can’t think,” she says.

“Well, you’ll still get more out of being at school than NOT being at school,” I reply. I even offer to pick her up at lunch time because most of her more rigorous classes happen in the morning today. I’m so nice!

I spend maybe 45 minutes working on her this morning. She’s not budging. Finally, she says, “I’ll just go in later.” That’s really not acceptable to me because I don’t want her to think mornings are that flexible. I insist that she get up now or she will be cutting school and will face consequences both at home and at school.

“Come here,” she wiggles her finger, motioning for me to come closer. I am standing in the doorway to her room, maybe five feet away. I don’t really want to go in there again because there’s really nothing else to discuss. I have said what I have to say. “Come here,” she begs again. I give in.

“I’m confused,” she says. Confused about what, I cannot imagine. “I’m confused,” she starts again. “Usually you’re so nice to me…” I can’t even listen to the rest. I just leave.

So there you have it. Yes, I’m nice. I’m fun. I joke around a lot. But I can be serious when I need to be. And this morning I am serious. I’m also frustrated and a little mad. I’m pretty sure she’s trying to manipulate me. I don’t think of her as being manipulative in general. Or dramatic. But I’m pretty sure she’s trying something underhanded now. She’s pretty clever and she’s incredibly determined. Maybe this will work.

Well, it doesn’t. I don’t even respond to that comment. “I’ve told you the rules,” I say. “I’m done talking about it.”

I remember the last time she wouldn’t go to school. When I spoke with her teacher, Mr. L., he encouraged me to get her to school whenever I could. Some of the day is better than none of the day. So this morning, after recalling that conversation, I agree to take her later. She will miss geometry, the one class of the day I’d prefer she not miss. But something is better than nothing. “I’ll take you for second period,” I offer.

“I don’t know when I’ll be done sleeping,” she replies. Oh hell no. I know what that means. Sleep all day, and Oh look I missed the whole day. Oh well!

“I’ll give you and hour and a half,” I concede. That’ll get here to school for second period. Better than nothing, I think.

She’s in bed. She now has about 45 more minutes until I try again. I have to admit, based on my past experiences, I am not optimistic. My head hurts. Yesterday’s migraine is trying to make a comeback. If I’m on the fence, stress will push me over. And this is stressful. I’m feeling discouraged. I am trying to hold on to our recent successes rather than let today overshadow my optimism. But at the moment, that shadow is pretty dark. Deep breaths. Deep breaths. And maybe some strong drugs for my head.

And here I am, holding my head and pondering my parenting style. You know what? I’m still okay with it. Most of the time it serves our family well. I try, through humor, to keep our family life light and fun in what is often a relatively stressful situation (the whole special needs kid thing). And it works. I’m serious when I need to be, but otherwise, forget it. Let’s do what we have to do, but let’s also have a good time. That balance is eluding me a little today. I’m not sure where that line will fall. But I will try my best. That’s all I can do. So I will pat myself on the back, give myself an A for effort, and see what happens.

A Sword Story Part II

Chris Irvine, Parent CoachLeave a comment

When you have a special needs kid, so many ideals that might have been important seem to fall by the wayside. Getting straight A’s (or whatever) or making the A team give way to things like making a good friend or being accepted. Seriously, that’s what all of us special needs parents dream of. It’s a hard road, sometimes, because we have no control and really very little influence. We try to put our kids in situations where they will have some success, but ultimately other people are involved, and there’s nothing we can really do about that. We try to help, and then we hope for the best.

So last week when Maddie went to school with her well-crafted duct-tape sword, and then came home with requests for two custom ones, I was thrilled. It wasn’t the response I had expected. At all. Wouldn’t you think that in high school, bringing a homemade duct tape sword (or really a sword of any kind) would be the source of open ridicule? Or at the very least a reason for sideways glances and judgmental murmurings?

Well, not only has this not been the case (as far as I can tell), the response has been quite the opposite.

Maddie arrived home from school today while I was out with the dogs. When I arrived home, she was exactly where I expected her to be: flat on her back in her room watching her favorite anime, which, I was delighted to learn recently, has twenty-seven seasons…so far. Every time she announces she has completed a season, I congratulate her on her excellent skills in TV-watching. Thankfully, she’s used to my sarcasm.

The first thing on my mind is always homework, but I try to play it cool and get some information about her day before I dive in to the serious stuff. I’m interested in that, of course, but kind of worried about the homework situation. When I greeted her, I smiled and asked how her school day was.

Her face lit up and she smiled. Big. “Awesome!” she exclaimed. Not just the usual answer of “great,” so I had a feeling something special had happened. She reached over to her nightstand and picked up a piece of paper, then unfolded it and handed it to me. Clearly she was excited about whatever was written down there.

The entire page was filled with writing. And it said:

“Pink and purple. No tail.”

“Blue and red, white tail, no black.”

Six entries in all. They are orders for swords. Six more people want her to make her signature duct-tape swords and bring them to school. I couldn’t believe it.

That truly is the opposite of what I expected. Not only were her swords not met with derision; they are desired. Maddie has something special, and at least some kids (and at least two teachers) recognize and celebrate it.

What my husband and I have always focused on, and desired most for Maddie at school, is the social piece. Sure, we want her to learn and develop herself intellectually. But more than anything we have put our dreams into Maddie having friends and being accepted. We want her to be respected, liked, and admired for the special gifts she has. She’s nerdy in the typical sense, but way cooler than most kids in the most meaningful ways. (Nerds rule, by the way.)

When she was at the private school, ALL the kids were “quirky.” It’s a school for learning differences, after all, so different is expected. For those three years, she was able to break away from the public middle school, especially, and just be herself in a place where there are no mean girls (though still some drama), no cliques, no way to get lost in the shuffle because it’s such a small school. And she emerged from there a young lady with an unusual sense of confidence in herself. We just hoped that confidence wouldn’t be crushed by her return to a more typical high school setting.

So today, the day of the big sword order, my heart is full. I don’t think Maddie sees the larger significance of this event, but she definitely feels something powerful. She feels important, I think. And she should feel important.

So I will happily buy all the duct tape and PVC pipe she needs to fulfill her orders. I envision an entire school of kids walking around with Maddie’s duct-tape swords. I know that’s a fantasy, but I’m going to enjoy that vision while I watch Maddie work diligently to complete her creations. And feeling pretty cool while she does it.

What a Difference a Day Makes

Chris Irvine, Parent CoachLeave a comment

This weekend I was elated. Maddie had a fair amount of math homework to do, and once I got her started, she went into her room, closed the door, and ACTUALLY DID HER HOMEWORK. I let her listen to music, even though her phone is involved, and that could lead to all kinds of distractions. I assured her at any moment I could burst through her door, so she’d better not be enjoying any screen time or there would be trouble. Happily, to my surprise, she buckled down and did her work.

Some time later, I checked on her. She was on her phone. I admit I was skeptical that everything was in order, but instead of being accusatory, I simply asked, “Did you finish all your homework?”

“Yes!” she answered with enthusiasm. She was light and happy. And now I was too.

“Maddie!” I said. “I think you’re transforming yourself as a student!”

She looked at me and smiled.

“Don’t you think so?” I added.

“Well, I do NOW!” she replied. She smiled. I was so glad I had said that.

I wanted her to feel the satisfaction and pride that come along with that accomplishment. I realized then that this new leaf might blow away with the fall winds, or dry up and disappear by the next day, but it was important that Maddie have this idea that she CAN transform. I believe she can.

Yesterday was a good day.

And now it’s today. It’s only 7:25 a.m. and I’m already rather discouraged. That’s not to say I don’t believe in Maddie anymore. It’s just that reality has set in. One good day doesn’t mean even one other good day.

I woke up her at 6:30. I’m so nice about it. I bring our little white fluff ball of a puppy with me and he wiggles and wriggles and buries his head in her blanket trying to gain access to her face for some kisses. Maddie lets our dogs lick her right in the face, and Banjo was going for it. It’s the best possible way to wake up because you can’t possibly be mad. It’s too adorable.

I stayed for awhile, searching for her favorite sneakers, getting out some shorts for this hot day and a shirt I was pretty sure she’d be excited to wear. And then the inevitably difficult search for a matching pair of socks. She doesn’t care if they match, but since she’s wearing shorts today, I put in some extra effort.

“I’ll be back,” I said.

My mornings are full of trips upstairs and downstairs. Up to work on breakfast and lunch, down to try to persuade Maddie to get up. It’s not unusual for me to make 5 or 7 round trips. (I have developed some pretty healthy calf muscles over the years!) This morning was typical.

Usually by the third time I go to Maddie’s room, I start to get a little stressed out. I try so hard to keep calm, and this morning I was pretty successful. But 15 minutes before the cab was to arrive, she was still wrapped up in her blanket. “Maddie! You HAVE to get up!” I announced. I have to admit, there was probably a little panic in my voice by this point.

“Don’t rip my blanket off! I’m getting up.” Shortly after that she was in the bathroom. Problem solved. It was cutting it close but she was up. It would all be okay.

At 7:10 she still had not appeared in the kitchen. Her breakfast had been sitting on the bar waiting for her. I still had to put her lunch in her backpack and fill up her water bottle. I ran downstairs, and there she was back in bed. She sleeps cocoon-style, wrapped in her blanket head to toe. I couldn’t believe it, which is kind of hilarious now that I think about it. The bigger surprises are when Maddie does what she’s supposed to do. This was a typical morning.

So I grabbed her clothes and together we got her dressed. It’s absolutely ridiculous for me to be dressing my rather curvy 15-year-old daughter. But the point was to get her to school, so I overlooked the absurdity of the situation and did what needed to be done. Well, not overlooked exactly. I just did the absurd anyway.

In her usual fashion, while I was running up and down the stairs as if the house was on fire, Maddie stopped to pet the puppy. In times of panic, she will still stop what she is doing to pet a dog, consider a question, or even just for dramatic effect. That last one makes my blood boil. Well, they all kind of do.

So this morning at that 7:10 mark, when I was scrambling to get her socks on her feet, I asked Maddie, “What were you THINKING?”

The truthful answer: “I wasn’t thinking at all.”

And therein often lies the problem. Most people would at least consider the outcome. It would be obvious that not getting up would come with some consequences. I don’t even think she was planning to stay home exactly. She just didn’t want to get up. Does that make sense? No, not really. But in her mind, only the not getting up part was relevant.

At about 7:18 she headed out to meet the cab in our driveway. I had heard the car drive up at 7:15, right on schedule. I hate for her to be late, but the cab driver is patient.

The moment she walked out the door, I was so relieved. I had been up for about an hour, and that hour is often the most stressful part of my day. My primary jobs as a parent are to keep my kids safe and fed, love them, and to get them to school. There is a mountain of other parenting to do as well, but those are the fundamentals. So at 7:15 when Maddie is gone, I feel triumphant. I really do. I accomplished something really important today.

What will tomorrow morning be like? Probably a lot like today. What about this afternoon? How much homework awaits, and will she do it willingly and independently? I expect to be challenged. That’s me keeping at least one foot in reality. I have to do that, otherwise I will be constantly disappointed. I prefer to be pleasantly surprised like I was yesterday with the homework thing.

Here’s hoping for an easy afternoon and a pleasant surprise in the morning despite the high probability of a repeat of today.