teens

The Brave Speak for Those Who Can’t

Chris Irvine, Parent CoachLeave a comment

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

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

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

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

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

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

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

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

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

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

Yet Another Exercise in Frustration

Chris Irvine, Parent CoachLeave a comment

I don’t know why I haven’t been blogging. It really does help me process my experiences. And I enjoy it. Also it reminds me I have abilities outside of my parenting duties. I can type, for one thing, and the words come easily most of the time. It feels good.

So why have I been neglecting my blog? Maybe I thought it was easier to pretend it all wasn’t happening. To write is to think, and to think is to not ignore. Not that I was ignoring anything exactly, but part of the past year has involved distancing myself from the day-to-day in order to preserve my own sanity and physical health. This is not hyperbole. Here’s what happened:

Once we established last fall that going to school was not a viable option for Maddie (remember the conversation: “So it seems to me you don’t intend to go to school anymore.” “Nope.”), the weight of the world lifted from my shoulders. My two-month-long migraine magically vaporized. I exhaled the longest breath of my life. And I just let it go.

But you can’t REALLY just let it go. A child under 18 who has not graduated or passed an equivalency exam is required by law to go to school. Her IEP mitigates some of that obligation, but eventually I was going to have to do SOMETHING. The school wasn’t initiating any efforts to solve the problem, so I took matters into my own hands and hired Kim, the educational therapist, to work with Maddie. Kim has been a magical force for Maddie, an incredibly calm presence who truly seems to understand her student. There would be no (or very little) actually going to school, but we managed to eek out a little school work, enough to get us all through the year.

It wasn’t easy. In fact, it was an incredibly frustrating process to negotiate with the school and the district to make this situation workable.

After a year and a half of attendance problems, which followed an initial meeting in which we cited ATTENDANCE PROBLEMS as our single biggest concern, we were still met with a serious failure to understand the core issue. Not once, despite indications to the contrary, did she see a counselor or a psychologist to help get to the bottom of the issue. It seems rather obvious that when there is a behavior issue, discovering the reason why is crucial coming up with a possible solution.

Finally, finally, fi-nal-ly, when I made it very clear that I didn’t expect any more schedule changes to affect Maddie’s ability to get up and go, the district offered something called wrap-around services. In theory, it’s great, and in many cases I’m sure it’s effective. The district contracts with a service provider who sends social workers out to your home to become acquainted with the child in the comfort of their own home (or on a nature walk or whatever works) and to learn more about the family situation, in order to address the behavior problem at its root. Very often the child has serious issues involving drugs or alcohol, so the service providers were thrilled to come to a home with a functioning family unit and supportive, loving parents.

However, I hesitated to approve this course of action. I wasn’t confident this would work. Something was holding me back, but our advisor suggested I consent because a significant part of negotiating with the school is playing the game, i.e. “pretending to go along with their recommendations so you have some legal standing and eventually they have to come up with the RIGHT solution.” Apparently this is a necessary step in negotiations, which I absolutely loathe. Why can’t we all put our cards on the table and make the best choice? Why this aggravating game in which nobody wins (except, I suppose, often the district’s budget)?

So after weeks of deliberating, I consented, and the team of ladies arrived at our house a week later to meet. It was a cadre of three women, one fresh out of college, one with decades of experience, and the other somewhere in between. These were three terrific women, easy to talk to, eager to help. I was optimistic. It really was worth a try, I thought.

Well, except for the part about playing along with the school district, it turns out it wasn’t worth a try at all. Courtney, the young woman whose job it was to connect with Maddie, didn’t have the experience necessary for a kid like Maddie. She was warm and friendly, but after the first visit, Maddie wouldn’t even get out of bed or show her face while Courtney sat there for an hour trying to get her to respond. That happened twice.

Heidi, whose responsibility was to meet with the parents and make a behavior plan, was enthusiastic and fun. Maddie’s interest was piqued when she learned Heidi knew what LARPing was. (LARPing is live action role playing, for those not in the know.) But she too missed the boat.

After repeated conversations in which I explained the history of my child, Heidi showed up one day ecstatic with her new idea: Maddie’s reward could be a weekend LARPing excursion.

Well, slap my head. I never thought of that! Just kidding! I should have slapped Heidi’s head instead.

Had she not listened when I explained repeatedly that neither rewards nor punishments have ever been reliably successful with my daughter? Had she not heard me when I told her you could tell Maddie she could go to Disneyland on Saturday if she went to school all week, and then Monday morning she would refuse to get out of bed, and then Saturday she would get up and say, “So are we going to Disneyland?” It just doesn’t work and it never has.

Did she not listen when I told her how many people have suggested we “find her currency” and that was the answer? We don’t know her f**ing currency because she doesn’t have any!

I was beginning to get discouraged, to say the least.

Then we had one more IEP meeting. Maddie still wasn’t going to school and we had to figure out how the school would accommodate her. Heidi and Courtney joined us. Heidi presented her magnificent LARPing plan and Courtney said nothing. Finally I asked Courtney to give her report.

“Oh, Maddie’s so great!” she offered, smiling wide.

I can only imagine the expression on my face. What? That’s your report? “Can you please describe your last two meetings with Maddie?” I requested, trying to hide my aggravation.

“Well she wouldn’t get out of bed or talk to me,” Courtney admitted.

I was calm on the outside (I think) but I wanted to scream. I was so angry.

Not only had these meetings been pointless, I was now frustrated beyond belief. Worse, Maddie was so tired of meeting with people and talking that she eventually didn’t want to see ANYBODY, including Kim, which whom she had developed a meaningful, productive and successful relationship.

There were countless frustrating email exchanges in the course of this failed experiment, some prompting me to cry ‘HELP ME AND PLEASE FIX THIS!” to our advisor and friend. I just couldn’t take it anymore.

At the start of that IEP meeting, my husband declared, “If don’t walk out of here with a new plan, I’m going to be very frustrated.” Amen to that. I had to say very clearly that we all had to accept Maddie wouldn’t be returning to school. A reduced schedule, the cafeteria job she loves, anything else they could come up with was not going to effect a change.

There is something going on with this kid that defies material changes in her school day other than not having a school day AT school. The district head of special education declared, “We are not a home school program. We cannot continue this course of action.” Somebody suggested the district’s alternative independent study high school. Sort of a good idea, except that there are weekly meetings with teachers and attendance is absolutely mandatory. Anytime I imagine absolutely positively getting Maddie to go somewhere, my heart sinks. Currently that’s simply not going to work. Luckily, the school counselor shook her head. At least somebody got it. She recognized the absurdity of a solution that included mandatory attendance.

Somehow or other, because the school year was winding up, we managed to come to an agreement. Maddie’s schedule would remain reduced. Eventually we decided she would go to school on Mondays, when she would attend every class and obtain her work, which she would do at home. Nobody was to make a big deal of her return: a quiet nod as she slid into her seat would be enough. She wouldn’t be seated next to two particular girls who cause her anxiety. She could work in the cafeteria. She would lie low (which, it turns out, meant doing whatever she wanted quietly in her seat, so when other kids were doing school projects, she might be writing a story on her phone, intending to do the work at home with Kim). It sort of seems ridiculous now, to force her to go to school in order to achieve absolutely nothing. But she did it. She completed her coursework. She went to school on Mondays, without a single fight.

We cheered for this little bit, but not too much because she doesn’t like it. I think she finds it condescending. We set what seem like small goals, but what are are shooting for is something challenging enough and, we hope, achievable.

I haven’t checked her grades yet. Honestly I don’t care what they are. I do hope she passed so she can have the credits as we launch into the next phase (online school!) but mostly I’m just thrilled we all made it until June 8th intact–my fiftieth birthday and the last day of school–intact.

Small Victories: A Birthday Story

Chris Irvine, Parent Coach2 Comments

Wednesday Maddie turned 17. Sounds so grown up. Most of our friends with kids the same age spent the last two school breaks touring the east coast and Southern California colleges. They’ve spent money and time on SAT prep, college counseling,  and just getting through the eternally stressful junior year. Some are launching their kids in the fall, anxiously counting the days until their babies fly the coop.

Yesterday, on the 17th anniversary of her birth, Maddie showed me the insecure young person inside and the socially savvy young lady that also resides within her. I never know what side I’m going to see.

A few weeks ago Maddie’s wonderful tutor Kim suggested they see a Giants game together to celebrate the end of the school year. A look at the Giants’ schedule pointed them to a day game which happened to fall on Maddie’s birthday. I wanted Maddie to do whatever made her happy and at the time it seemed like a great idea. Looking back I think I was in denial at best, and just straight up stupid at worst. This was in fact a mistake whose full terribleness would  not rear its ugly head until that morning.

First of all, this plan involved me having to wake Maddie up. It has been established that this is to be avoided whenever possible. Waking her up to go somewhere or do something, even something ostensibly appealing, is fraught with emotion and fear for me. I think I fake it rather well, but even a failed first attempt sends tensions throughout my body and I feel my heart clench. I breathe deeply to remain calm, but I’m immediately almost ready to give up. The problem that morning was that I had bought ferry tickets, so the arrival time mattered. The Giants game ferry really does complete the experience, but it adds significant time and eliminates flexibility. Anyway, I feel like this alone doomed this notion to failure.

Second, Maddie was sleep deprived. For some reason sleeping didn’t go well the night before. Maybe, as it turns out, she was anxious. I also know she was up at 3:00 a.m. because I, too, was up at that time searching for a cough drop when I felt a light tap on my back (DON’T EVER DO THAT AGAIN! I said). She was mid-allergy-attack and looking for a Zyrtec.

So at the start, we had two strikes against us.

And then, the tears. She was tired, she said. She was trying so hard to power through, but, tragically, on her birthday, she wasn’t able to cope. Her tutor, Kim, used her magical skills to try to turn it around. And in fact there was magic because although Kim ended up leaving our house, alone, in her Giants gear, there was a breakthrough. Maddie realized she just didn’t feel comfortable doing this new, out-of-the-norm thing with her tutor. She would go to the game, but only with me. The tears were from fatigue, to be sure, but also from insecurity about this new situation. This girl whom I think of as fearless isn’t in fact fearless. She’s often so brave, but the sense of being able to be in the world without her safety net (me!) is sometimes fragile.

So in her usual way, she inhabited a young child and a mature person in the same moment. Her anxiety came from insecurity, fear of the unknown, fear of feeling untethered, her inability to imagine herself through the what-ifs into a mental picture of success. And yet (and this is even more significant me) she was able to access her feelings and the reasons behind them, and then ask for what she wanted. Such a huge achievement for this kid!

And so, as it should have been all along, I took my daughter to a Giants game for her birthday. Once we arrived at this conclusion, I let go of my stress and just went with it. I ditched my long list of errands, cancelled a salon appointment, packed up my sunscreen and a hat, and off we went. It was too late for the ferry (the ship had in fact sailed by that point), so we hopped in the car and headed across the bridge. The fretting was over. Time to jump into this surprise of a day.

The Giants were terrible. But the day was beautiful and due to a lack of forethought on my part, we had tickets behind the opponents’ dugout, which put us in a sea of Kansas City fans. And that, my friends, turned out to be great! As the numbers on the scoreboard became more and more lopsided, the crowd around us erupted in cheers. They were having fun, and so were we. The couple next to Maddie was visiting California from their home state of Missouri, following their beloved baseball team around the state. They were so friendly, offering to buy Maddie treats for her birthday and engaging in conversation. We talked about all of the wonderful things you can do here in San Francisco, and Maddie asked, “Have you been to Muir Woods?”

Well, that might not seem like a big deal to you, but it sure was to me. Such an appropriate and normal thing to say! She was engaged and conversational! And she asked a relevant and meaningful question, given that we live not far from there. And when the husband repeatedly and enthusiastically offered to buy her a frozen lemonade in honor of her birthday, she politely and gratefully declined several times before finally admitting “Lemonade isn’t my thing.” I felt like a million bucks. My daughter who struggled in the morning, who seemed like a child afraid to be too far from her mother, was out in the world acting her age. Only a parent of a special needs kid would feel like jumping up and down because their kid said something appropriate.

Much to my surprise, we stayed for the entire game (well, almost). It was hot out there in the sun, and she hadn’t really been paying much attention to what was happening on the field (really, who does at a baseball game?), but although I repeatedly informed her that everything was up to her, she was happy to stay. We bought at Pence jersey (“I don’t know who any of these guys are,” she said when shopping for jerseys. “Then just pick a number you like,” I said.) and a big orange foam finger and garlic fries.

In the end, I would call this day a success. But it wasn’t easy. Sometimes I’m reminded in no uncertain terms of the challenges my daughter faces. Sometimes I’m not reminded but instead learn something entirely new. My brave, strong kid can still be a frightened young child inside. She can still struggle to know what she’s feeling, and when she is able to not only identify it but also verbalize it, it’s a small victory. I can’t even think about college, or next year, and sometimes not even tomorrow. It’s enough, quite often, to be surprised minute by minute.

Recently my sister recounted a moment with her teenage daughter. They are both musicians, and my sister has been playing more regular gigs. After a recent performance, “You inspire me,” her daughter began, and my sister’s heart swelled with pride. “To eat ice cream,” the sentence concluded.

“That was a rollercoaster of a comment,” I replied.

And that is precisely how I feel. A single moment with Maddie, a single utterance, can encapsulate a high and a low, both a pleasant surprise and a slap-in-the-face reminder of the challenges we face.

But still, as of yesterday, my daughter is 17. That is 17 years of her becoming this complicated young lady, and 17 years of my own growth into the mother, and person, I am today.

The Problem with Geometry

Chris Irvine, Parent CoachLeave a comment

When I had geometry in high school, I loved it. Math came easily to me. Geometry was intuitive and satisfying, especially proofs. If this, then that, and then this, and then finally that. I think what I enjoyed about math was coming up with a solution that is objectively right. You know when you are done, too. It’s probably the only field of study that is so concrete. Science is as well, but even as we answer questions using science, there is always the possibility that those answers are wrong or just incomplete. Math is so much better in that way.

Unfortunately, I am finding my battle with geometry a bit less satisfying this time around. As I like to say, “School was so much easier the first time I did it!” I was in charge of myself, for one thing, and nobody else. I did my work and that was that. Now I’m coaxing and helping and struggling and sucking at it.

My husband and I were both excited for Maddie to have geometry this year. She’s very visual and spacial, so we thought it would be a good fit. Also proofs were alway satisfying to both of us, so we anticipated Maddie would find the same interest we had. Uh, nope.

What I hadn’t thought through was her difficultly anticipating the future and how it might affect her ability to do a proof. You have to have a vision of how to get from the beginning to the end, and all the steps in between. She is having trouble. They’ve just started on this particular section, so I’m certainly not throwing in the towel, but I can see already that proofs aren’t coming as easily to Maddie as the rest of geometry has.  That mental follow-through just isn’t happening.

Furthermore, as you probably know, math has changed so much over the years. While premises and conclusions might be the same as they once were, the methods for getting to the end have changed dramatically. This has been a problem in our house for years. Do I remember algebra? Sure, but I’ve never seen it done that way. Proofs, it turns out, look different too. I could learn the new method–once I seriously reviewed the theorems involved–and then I could help Maddie. But for now I’m stuck.

Because math has historically come easily to Maddie, having trouble with a concept doesn’t sit well with her. She has little patience for going to battle with her homework. If she can’t do something right away, and do it easily, she gives up. She gets discouraged. She certainly has grit in other facets of her life (she has had to develop that), but homework isn’t one of them.

So over the weekend, when she had numerous missed days to make up for, geometry just didn’t go too well. We looked up a tutorial on the internet. That was potentially very helpful, but without the theorem knowledge in my head already, and without Maddie’s commitment to really trying, watching the video was pointless. I gave up. I got her through the homework she could do without much trouble, and hopefully she’ll seek out the help she needs at school.

The problem is, once again, she is not at school. She wanted more sleep, she said. She’d go later, she said. I knew she was tired. I also knew she wouldn’t go at all today. She has never once done that.

And so I accepted it. I knew she would never wake up, stretch and look outside, and think, “All right! I’m going to school! I’m ready for action!” She promises she will go the rest of the week. And for now, she means it. But she can’t really anticipate tomorrow, or what will happen if she doesn’t go yet another day. Just like the proofs, she can’t get from point A to point B to point C in her head. She’s living in point A. Always.

And unlike geometry, there is never a right answer with raising Maddie, or really any kid. You never know if you’re right or when you’re done. You can never write down that number and drop your pencil in a dramatic fashion as if announcing victory over your homework or your test. Problems aren’t solved. They morph into new ones. Or the answer you thought was right appears to be wrong now. This stuff is hard.

So we begin the week with Maddie behind severals days in her school work, and getting behind yet another day. Apparently the school’s current solution is to continue lunch detentions (Who cares? she says), and then bring in a truant officer. When? I want to know. And to do what exactly?

I don’t know what the solution to Maddie’s attendance issue is, but I’m pretty sure we are miles away. I guess the key is accepting that. Maybe even accepting the a solution or answer isn’t possible at all.

I have a friend on Facebook whom I knew in high school. He is a kindhearted, lovable and well-loved man who was in the special education class. He’s in his early 50s and still lives at home with his parents, who obviously adore him and fully participate in his life. His posts are typically upbeat and fun as he gets to do so many fun things with all of the people who love him. I don’t think he works. He’s very much like a kid in an adult body, and he gets to live out his childlike existence in such a lovely way. Nobody is forcing him to grow up, and nobody is pressuring him to be any different.

I was suddenly very struck by that yesterday. What if I discarded the idea of finding a solution? What if I went all the way, one hundred percent, to acceptance? What if I just focused solely on Maddie’s happiness and let her be the kid she seems to want to be?

The problem (if you want to call it that) is I know Maddie’s intellectual development is not an issue here, and she is quite capable in many ways, so I’m not sure at all when to give up the idea of her moving forward in life, living on her own, maybe going to college, maybe having some kind of job, maybe even having a family.

I think for now I’ll keep pushing forward, with the knowledge that at some point I’ll have to shift my expectations. And accepting that possibility.

For now I just have to get us through this day, and this week, and the next. At least at that point she’ll be on winter break, so I can relax a little. And maybe re-learn some geometry.

The Comparison Trap

Chris Irvine, Parent CoachLeave a comment

Recently I learned of another blog by the mother of not one, but two autistic children. I believe they are both in the Asperger’s realm. The particular entry I came upon addressed the problem of comparing our children with others.

My first reaction was, “Oh, no! This blog is better than mine!”

Ironic, no?

Once I got over the ideas that (1) it’s not surprising that I’m not the best blogger in the universe, (2) I might learn something from this woman, and (3) she is right, I began to percolate on the original premise: Comparing our kids is counterproductive.

And this doesn’t apply only to those of us with special needs kids. Nor does it apply only to our kids or our parenting. Comparing is a bumpy road fraught with dangerous pitfalls, but it sure is an easy path to embark upon for some reason. Human nature, I guess. And, I suppose, American culture, which puts the utmost emphasis on working and achieving.

“What do you do?” Isn’t that the question everybody asks when shaking the hand of a new acquaintance? I dumped that question a long time ago, preferring to get to that topic down the road a bit. But I have to admit, it IS still the first thing that crosses my mind. I just made a conscious choice to stifle it. But I practically have to stuff a sock in my mouth to suppress the urge.

I don’t know about you, but where I live (and, since many of you are my friends, where you live too), kids are always doing, doing, doing. They’re playing competitive soccer, taking voice lessons, learning Spanish on the side, going to a math tutor not to stay caught up, but to get ahead. It’s a constant state of go. Who you are is largely defined by what you do.

So when you have a kid who’s behind everyone else in many ways, who’d rather sit around and play Minecraft with her online friends, whose only sport developed in middle school in the form of lunchtime basketball (defense only! no shooting!), who is bright but doesn’t especially care about school, who isn’t likely headed to Cal or Stanford and maybe not college at all, how do you define your child? How do you rank your parenting?

It’s really quite simple. You don’t define or rank or compare. You appreciate your children for their unique attributes. You guide your children toward kindness and compassion above all else. You allow your kids to flourish in whatever way they wish, whether it’s on the field, in the classroom, or in a sea of specialty duct tape.

If I were to define Maddie, it would be by her kindhearted nature, her ability to approach anybody with full confidence and no fear, her intense interests, her compassion. What is Maddie? She’s not an athlete, a scholar, an artist. She’s a wonderful human being, that’s what she is. What she chooses to do in her spare time now, and whatever she chooses to do with herself in the future, she will still be a wonderful human being. She will be a wonderful human being who happens to garden, or teach, or write, or do research. She is a person who is, and happens to do.

I can say that now because even thought it’s simple to make this choice, simple doesn’t always mean easy.

It was especially challenging not to compare Maddie to the other kids when she was young. My mothers’ group got together weekly, beginning when Maddie was about six weeks old, and within a few months it became clear that other kids were following the anticipated milestone schedule and she just wasn’t. I wasn’t alarmed at all, but it wasn’t super fun to participate in the conversations about all the cute things the other babies were saying while Maddie was only screaming. The others were sitting up or crawling, and Maddie was toppling over, blank-faced. I would joke about it, as is my way, but it didn’t feel very good to be left out of that conversation in a meaningful way.

I still suffer from that feeling of isolation in a way, often because of the comparison trap. I’ve written about this before: When everybody is talking about what’s going on at our local high school, or the dating thing, or the sports teams their kids are on, and (soon, I’m sure) where everybody will be applying to college, I can’t help but think to myself, Maddie is different, and feel a little sad about it. Sad for myself, I guess, because I’m missing out on certain aspects of life with her, and sad about how disconnected I feel in that moment. When the conversation begins to veer into that territory, and all the women begin contributing enthusiastically, I envision myself shrinking away from them all. That’s how it feels. And it’s all because in my head, I’m comparing our experiences, comparing our children. My child is different. My experience is different. And for a moment that difference is painful.

But that’s my own problem.

And I know it’s my problem because I have another kid with whom my parenting experience is quite the opposite. He was exceedingly verbal at a young age, and he walked before he was 11 months old. He has played on a few sports teams and done fine, although he is not a committed athlete. He’d rather bike around with his friends and play pick-up games of soccer and basketball. He’s very organized, self-motivated, and bright. He once got a perfect math score on the annual achievement test, something I ended up being kind of bummed about because from then on he would always expect himself to live up to that achievement, and be disappointed in his performance even if he only missed a single question. And that has been his experience. He also was the last third-grader standing in the annual school spelling bee, just short of making the next round.

So even though he doesn’t play competitive sports and he only took drum lessons for a year, he’s an achiever. And sometimes I get caught up in that. When he quit playing soccer the first time around and gave up on drum lessons, I was disappointed and maybe even a little worried. Would he ever stick with anything? Why didn’t he want to play soccer and play an instrument, when all his friends are athletes and/or musicians? When he signed up for Little League for the first time at the age of 10, it felt like a lost cause because all the other boys had been playing since t-ball days. He was so far behind! How could he compete?

That first season had a rough beginning to be sure, but it reminded me of something very important, that who he is, is more important than what he does. He didn’t get a single hit until the last game of the season (mainly because he wasn’t swinging), but he kept on trying. He was a good sport. He made friends. He had grit. He had a good time and was willing to learn. The coaches liked his attitude. It wasn’t about his achievement–or lack thereof–but the kind of person he was and is becoming through all of these experiences.

And the same goes for me as a parent. There are so many occasions when I feel like a failure. I have met other parents along the way who chart like there’s no tomorrow, who work for hours each day with their young children doing the prescribed OT exercises that I was too tired to do, who religiously work new foods into their choosy kid’s repertoire, and whose kids are organized, well-behaved, and well-dressed because of those efforts. Do I do what they do? And do my kids measure up, and if not, is it my fault?

In the immortal words of Maddie, who cares?

My adult life, my parenting experience, is also a journey during which I am still becoming. I’m changing and evolving and learning and growing. I am figuring out what’s important to me. I’m discovering my own gifts, and dismissing, over time, an ideal that isn’t worth pursuing.

I, too, was an achiever as a child. What I accomplished was important to me.

But having any child, and most especially a special needs child, turns that idea upside down because you suddenly have so little control over anything quantifiable. How do you judge your achievement as a parent? How do you know if you’ve done well when you aren’t so focused on the doing, but rather on the being?

I guess that’s the good news: You really can’t measure that. So I stop. I stop worrying about what the other kids are doing, what the other parents are doing and how they’re doing it. Or at least I try. I am striving to be a better person, to focus on what matters, to be an example to my kids. I hope I am teaching them kindness and compassion, both for themselves and others. I hope I am showing them how to be a devoted and generous friend. I hope they are learning that who they are matters more than what they do. Actually, I think I’ve been learning that from Maddie all along.