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.

Five Beautiful Words

Chris Irvine, Parent Coach2 Comments

The first time Maddie said anything (okay, the second, after the “light” incident), she said “Mama.” It was a long time coming, so even though all moms cherish the moment their child says that magic word, it was especially sweet for me. Twenty-five months of waiting and working finally paid off.

And today, Maddie is incredibly articulate. She’s not a huge talker necessarily, but she’s always on point; when she says something, it’s worth your attention.

But today she said something so magical, it was almost as exciting as when she said her first word.

Today’s memorable quote? “I’m gonna take a shower.”

If you’ve been following my blog, you know that personal care has been a huge issue for her. To be more accurate, her lack of personal hygiene has been a problem for me. We’ve had some terrible conflicts over her refusal to bathe herself. I can’t stand the teenage B.O., for one thing. But more than my own sensory torture, I’m concerned with how her failure to keep clean will affect her socially. NOBODY likes a stinky person. Well, maybe other stinky individuals, but we live in a society of good-smelling people who bathe regularly, so greasy hair and smelly pits just don’t do a person who’s already struggling socially any good.

So when she appeared in the kitchen with a towel, her phone, and her bluetooth speaker in hand, I couldn’t even fathom what she was up to. “Whatcha doing?” I asked.

And then she said those beautiful five words, “I’m gonna take a shower.”

When you have a child with delayed development, each minute achievement feels huge. I remember the entire year that followed “Mama.” Each sound was so slow to come. She would try and try to figure out what her lips and tongue were supposed to do to make a new sounds. “Nnnnn,” she would finally say, and it was cause for great celebration. A new sound! Woohoo!

It wasn’t like typical language development, which we often take for granted. Somehow babies absorb everything they hear, and their brains are able to make sense of it all. For Maddie, the words made sense; she just couldn’t move her mouth properly to make the sounds that form the words.

So, “mama” was first. She was 25 months and 2 days old. “Dada” came a little later. And that’s when we started calling her Maddie instead of Madeline. Making sounds was so difficult, and putting them together into a word was nearly impossible, so we thought the least we could do put her own name within reach. At first she referred to herself as “Ma-Da.” I separated those syllables because that’s how it sounded. “Ma. Da.” It wasn’t long before she could say that. What a relief that must have been for her! Instead of pointing to herself, she could actually say her own name!

The way I helped her learn words was really teaching her to read. We spent a lot of time with foam letters in the bath tub. I would stick them on the side of the tub, and we would sound out words. For a long time she said “wot” for water. Adding another syllable was too much. She said “c-at,” and just “hh” for her brother’s name.

By the time she was two and a half, she could read a few words. I would write the names of our two cats on a white board, plus “mom,” “dad,” and her brother’s name. She could identify them with ease. Whether or not she could actually say them was a different story, but by that time she knew the sounds associated with all the letters purely out of necessity. I didn’t set out to teach her to read; it was just a way to practice speaking, and especially combining sounds.

When you have a typical kid, you just can’t fathom the miracle that speech acquisition is. But when you have a kid whose every tiny forward movement is the result of hard work, it suddenly becomes miraculous.

And so it continues. I would bet that if you don’t have a special needs kid, you don’t remember your kid announcing they’re going to take a shower. Big deal. People take showers.

This isn’t the first time she’s ever said that, but it’s such a challenging issue here at our house that even one crisis averted is momentous. Those words might not be magical necessarily, but I feel like a million bucks. I’ve had a hard day. That one moment just made it all better.

And then something else happened. I had put a pot of water on the stove, intending to make pasta for my son. I then went to my room and started to write. Sometimes I lose track of time when I write. I get on a roll and everything else fades into the background. And so it was tonight. About 15 minutes into my session, I remembered the pasta. My son was waiting for it, and he’d been in kind of a bad mood all day. I knew I was going to hear about the delay.

I raced to the kitchen to toss the pasta into the boiling water, and right away I noticed the timer said 5:17 and was descending. Maddie was sitting in the kitchen texting her cousin. I realized she had seen the water boiling and taken the initiative to get the pasta going. For me. For her brother. It wasn’t for her at all. But she was observant enough to notice, and thoughtful enough to do something about it. To her it was no big deal. To me, it means the world. I am raising a good person. All the work I have put into parenting her is paying off.

And she continues to amaze me. Some days are so hard. Sometimes she gets stuck in her own head and can’t see beyond herself and the moment. And other times she is thoughtful and engaged and motivated. Sometimes she announces, “I’m gonna take a shower,” and notices I need help and does something about it.

Those are the breakthroughs. Those are the times I want to hold onto. Those are the things that define the person she really is. And she is awesome.

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.

Another Terrible Morning

Chris Irvine, Parent CoachLeave a comment

Yesterday Maddie announced, “I’m staying up until at least 9:30 to see the moon.”

And when Maddie has committed to something like that, you’d better believe she’s going to do it.

At around 9:00 p.m., the Blood Moon wasn’t so bloody any more. Looked like a regular old moon to me, but Maddie assured me in the next half hour she would be witnessing a full moon/eclipse, something pretty special.

That might not seem like a big deal to you. I mean, the staying up until 9:30 part. But this is a kid with a very sensitive body clock. Getting off track for even one night can spell disaster.

But she was so determined to enjoy this natural spectacle, announcing the next time wouldn’t be until 2033 or something like that. Honestly, that doesn’t sound too far away to me, and I thought, well, she should just wait until then. But I caved. I caved for two reasons: One, the Super Blood Moon sounded pretty cool, and, two, she was going to stay up no matter what I said. So I made her pinky swear (yes, we really hooked pinkies) that she would get up in the morning. She looked me in the eye and promised. At the time, she meant it.

Today’s lesson: Pinky swearing means squat to Maddie. Oh, sure she means it in the moment, but when push comes to shove, forget it. And here we are, two hours after the cab came and went, at odds with each other. I am utterly FURIOUS. I am not an angry person by nature. I tend to have a lot of emotions wash over me before fury comes into play. But today I went straight there. Actually, tonight’s fury is about 15 years in the making, to be honest.

I pull her pants onto her 15-year-old body while she just lies as limply as possible. And she’s really good at that. I even try to put her bra on her, but it’s just a tangled up mess, half way on and half way off. In desperation, I even grab my glass of cold water and throw a bit into her face to wake up her. She just flops from the sitting position I had gotten her into, onto the floor, and finds another blanket to wrap herself up in. I manage to get that off her, too.

“GET UP GET UP GET UP GET UP GET UP!!” I shout. I am so frustrated and mad. I remember the goal of this year: to either teach Maddie to get herself together enough to go to school on a regular basis or ship her off to boarding school. The first option is the only one I can really wrap my head around most of the time. School is going so well. They are doing everything right over there. She is fortunate to be in such a wonderful environment. But if she won’t find the motivation to actually GO, there really is only one option. Ugh.

“Maddie! If you don’t learn to get yourself up and go to school, the next option is boarding school,” I say firmly. There is more anger in my voice than I would like in delivering that message. But then I have to remind myself, if she can’t live up to the pinky swear from the night before, how is she going to successfully link what happens today to something so hard to grasp some time in the future? Well, she’s not. She says nothing and stays limp.

“Are you going to school at all today?” I finally ask. She had requested just a little more time to sleep originally. Now she’s just refusing to go. She shakes her head.

Then I have to walk out. What else can I do?

All of her screens are hidden in my room already. I told her last night she would lose them for the week if she didn’t follow through on her promise. Right now, though, she doesn’t care.

And here we are. A lovely way to start out the week. I wonder sometimes why I try so hard when I know my effort will be wasted. But I hate admitting defeat. I’m not sure I’m there yet. On the other hand, I’m so upset I’m not sure anything I do or say will be helpful.

Deep breaths. Deep breaths. I’m trying to decide how much more effort to put into this today. I might drive myself crazy for nothing. That doesn’t seem like a good choice. Neither does just letting Maddie relax because of my own limitations.

So I give it one more try. It ends in Maddie throwing water at me. “All right,” I say. I guess I had that coming.

I realize that all the energy I have put into trying to get her up, Maddie has captured and put into her stubbornness. She is sucking the energy out of me and using it against me. Well played, I guess.

But this is not a game. It’s not fun.

“I give up, Maddie. You feed yourself and take care of yourself and don’t involve me. I don’t want to see you. Get out of my room,” I say, just after she pelts me with Nerf bullets. She’s trying to get under my skin. Too late. She’s there. But I don’t react. “Stop it,” I say calmly.

She’s in her room now. I don’t know what she’s doing. I can’t think about it anymore.

Have you ever had a nervous breakdown? Well, I have. I can’t go back there. I have to let go a little.

But the future looms large in moments like this. How will she EVER do what she is supposed to do? How will she finish school? How will she have a job? Will she spend the rest of her life resisting what she is supposed to do basically out of principle? Will she ever remember to brush her hair without 20 reminders from her mom? Where are we all going with this?

And even more immediate: Will she get up and go to school tomorrow? How much of my sanity will be chipped away by this encounter?

I’m not proud of myself. I’m not proud of either one of us. I just feel overwhelmed, angry, discouraged, and defeated.

The night before last I had a terrible nightmare. Some unidentifiable person was forcibly somehow taking my breath out of my body. I couldn’t breathe at all. I was trying to scream for help, over and over, but of course nothing would come out. I was utterly terrified. And then, I believe I was still dreaming when I “woke up” but was unable to stay awake, even though I was trying desperately to avoid returning to my nightmare. Ultimately, in my dream, I did go back to sleep, and there I was, once again unable to breathe. I finally woke up for real, still in terror. My husband wasn’t in bed yet. I was alone and afraid, once again, to go back to sleep.

There is a theory that dreams are our subconscious’s way of working out the problems in our conscious lives. Characters and events represent something real in our lives, and our brain is figuring it all out. I am wondering what this dream means, but I don’t have to think too hard. There are moments when I feel helpless and hopeless and alone. And I just can’t figure out how to solve the problem. This is one of those times.

Fortunately I can actually breathe. But I do need to breathe more deeply, to breathe and breathe when I feel this way. To reach out to those who are on my team. To remember this is not life or death, even though the weight of it feels that way sometimes. We will all be okay. I just have to make my own definition of okay. At the moment, I’m not sure what that definition is. I’m working on that.

It’s now 10:10 a.m. My goal is simply to get through the day. That’s pretty typical. Mindfulness comes to me naturally, given my circumstances. Just get through the day. 

Once, years ago, my husband asked me, “Where do you want to be in five years?” Well, that question absolutely boggled my mind. “I’m just trying to get through today,” I answered. And that is the truth. Sometimes I’m just trying to get through the moment. That’s my big goal. Make it through the day. I don’t know if that’s good or bad. It just is.

I’ll get through the day somehow, and hope I get a decent night’s sleep, so that I’m prepared for whatever comes my way tomorrow.

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.