In addition to my 15-year-old daughter who is the primary subject of this blog, I have a 13-year-old son. He generally doesn’t like me to write about him. But I can’t possibly tell the story of Maddie and our family without mentioning him. He did appear in a pretty sweet story a few days ago.

The story I want to tell about him is just the general story of the sibling of a special needs kid. It’s not easy. At all.

It all started about that time I got pregnant with H. Maddie was 18 months old and I was ready to get going on kid number two. This was all very planned. But as it turns out the pregnancy coincided almost exactly with our embarking on a variety of therapies for Maddie. She and I went from having a relatively quiet, mellow schedule to having appointments nearly every day of the week. Occupational therapy, physical therapy, speech therapy. She was behind in all that, and the moment I got pregnant was the same moment it became apparent our first kid needed so much help.

Oh, no. What am I doing? I thought. I was more terrified of having a second kid than I had been anticipating my first. I think the first time I was so excited and a bit naive. I was now more prepared in every way, but also knew what was coming. How would I ever get anywhere on time with two kids?

Well, I managed fine, which was good because we had to get to places on time a LOT. When H was born, we still had several weekly appointments all over the county, and I certainly did have to get her there on time. Plus I had an infant to tote around.

So that’s how H spent the first few years of life. Most everywhere we went was because Maddie had to go there (or I wanted to, in the case of my mom’s group). Very little in our life was designed around my son. He was just along for the ride.

When Maddie was two years old, I put her in a gymnastic class for tiny kids. It was so cute! My friends and I would sit with our little ones and stretch and pose and jump around. It was easy when my son was an infant. I could just plop him in his little car seat and do my thing. But he was a kid that never wanted to be restrained. As soon as he could crawl at 7 1/2 months, he wanted to be free. Then he walked at 11 months. And he had places to go! Things to see! Trouble to get into!

Soon enough I couldn’t manage my active toddler in the open space of the gym, and after many leers and comments from the staff, I had to bail out. Even when Maddie graduated to the class where parents were sidelined, I couldn’t contain my high-energy, curious son. So that was the end of that.

The pattern continued. Even if outings weren’t centered around our daughter, it’s the nature of special needs kids that they have, well, special needs. That means a lot of time and attention is required, and we parents only have so much to give. So, as much as we may try to dole out our attention evenly, inevitably the special needs kid gets more. She needed more help with homework, she needed help shampooing, she needed 20 reminders in the morning to get up. She might even be causing trouble and need reprimanding, and that still requires our attention. The other kid loses out at little bit, if not a lot. It’s the nature of things.

Last night I was at the new high school’s back to school night, and the kids were home alone for the evening. What ends up happening often is that H manages things a little bit. He thought to feed the dogs. When I called him he passed on my request that he and Maddie get ready for bed. And then he took on the responsibility for making that happen–for both of them. I don’t expect him to at all, but it’s the nature of our family that often he takes the older sibling role. Sometimes that benefits him. Other times he’s a little resentful. It’s understandable, but truthfully he fills that role well.

If you know me and my son, you know that we are close. In some ways we are two peas in a pod. We laugh at the same things (yes, I have the sense of humor of a 13-year-old boy!), we’re both compulsively punctual, we love our dogs, we care deeply about school. We’ve spent hours and hours throwing the baseball at the park or shooting hoops outside. We have a great time together. We have a relationship that I’m proud of because he really talks to me, and I’m equally honest with him.

Fortunately we have had the luxury of time in the last few years as Maddie’s school days have been longer than his, and the school year itself was longer. She also goes to summer camp. And she would opt out of a park excursions with the dog and the baseball, giving my son and me some good quality time.

Still, H knows what’s going on, and he has for a long time. He accepts it now, but there were many years where he suffered. He had to stand back or go to his room while I was dealing with his sister in some very volatile situations. He was left to his own devices to do homework (luckily he could) while I devoted hours each afternoon to help his sister. I don’t know that Maddie necessarily takes more of my time anymore, but she has certainly taken more of my energy sometimes.

I can’t tell you how many times my perceptive, expressive son told me I wasn’t fair. I was easier on Maddie, he would say. I expected more from him, he’d tell me. You know what? He was right. I struggled with that concept at times, especially hearing it directly from my own child. But then I had to remind myself something very important: Being fair doesn’t mean being equal. Being fair means giving each child what he or she needs, expecting each to live up to their potential. Would it be fair for me to lower my expectations of one child so that they match up the capabilities of the other one? That doesn’t make sense. It’s the job of parents to help our kids grow and learn. We have to meet them where they are and take it from there. I’m not saying I always do it right. I probably blow it as much as I succeed. But my heart is in the right place, and I don’t regret holding my son to a standard that he can live up to.

Still, it’s important to recognize the extra challenge of having a special needs sibling. When they’re young, you can set aside one-on-one time, and as they get older, you can be honest. I’m honest with my son because he gets it, even when he’s not happy about it. Eventually he’ll fully understand everything I’ve done as a mom for both him and his sister. I also hope he grows to appreciate what a wonderful sister he has. I feel like we’re getting there.  At least I hope so.

This morning I faced the usual Monday morning trouble. Despite some promises Sunday night, Maddie just wasn’t getting up for school. I somehow managed to get her dressed, but then she wrapped herself back in her blanket. She had made a choice. Her cab came and went. I emailed her special ed teacher about her missing school. I had said and done everything I could think of, so at 7:15 I was just looking up the attendance office phone number for school.

Then my son came into my room. I have so much to say about him, but my almost-13-year old gets upset when the stories I relay come back around to him. From me to my friend to their kid to him. Boy, have I heard about that. Even when the story as about something astoundingly clever that he said. I hope he forgives me for telling this one (also if I know you, shhh!):

When he came my room, I learned he had taken it upon himself to try to motivate his sister. He gave her a pep talk, and then a HUG. He’s generally not fond of hugging his sister, which interestingly has made those hugs a valuable commodity. I’m not sure what he said, but the next thing I knew, Maddie was in my room, dressed and ready to go. I drove her to school and she was on time. Henry is pretty sure he’s solved the problem for the entire semester. I certainly hope so.

Maddie and I said our goodbyes and hopped in the car. I had to drive her today. On the way to school, I pointed out that her brother loves her and cares about her. “He really gets you,” I said.

“I know,” she nodded.

He hasn’t always been willing to show his affection for her. Times have been tough for him at times. But my husband and I have always had faith that one day he would truly appreciate what a wonderful person he has for a sister. And today there was clear evidence.

I then I reiterated to Maddie the importance of having better mornings that this one. “It’s hard on the whole family,” I said. Then I turned to my right and saw her looking straight ahead. Tears were forming in her eyes. I was afraid I had upset her.

“I’m sorry if I hurt your feelings,” I said.

“I’m crying because of Henry,” she replied. “I never thought he would make me cry tears of joy.” A couple tears broke away and fell.

Sometimes my family feels so splintered and stressed and dysfunctional because of our special needs kid. But today I was overwhelmed with joy and gratitude and pride and relief and hope. Hope that my two kids are finding, early on, that they need each other. They do. And they always will.

Good night, everyone. Sweet dreams.

Some days I’m just in awe of Maddie. In a good way, of course. She has so many wonderful qualities that many of us only aspire to have. Other days, or maybe just part of the day, I feel like beating my head against the wall in frustration. I’m having one of those moments.

Maddie’s intellectual capabilities have never been in question. Often it’s the executive function piece that gets in the way, and tonight is one of those times. It’s Sunday night and even though it goes against my homework philosophy (or perhaps my Sunday evening philosophy), here we are at 8:42 p.m. dealing with the weekend’s assignments. It’s math and science tonight, her two strongest subjects. And I’m losing my mind.

Executive functioning consists of a group of mental skills that help you organize and act on information. With these skills, you can plan, organize, prioritize, pay attention and initiate tasks. Challenges with executive functioning make it difficult to keep track of time, make plans, finish work on time, multi-task, and look for information when it’s needed. And there it is: Maddie’s school problems in a nutshell. Each school year, the requirements in these areas become more sophisticated, and she’s not keeping up.

So tonight she started with geometry. It’s all new to her, but typically she has not needed help in math. In fact, last year when she was in Algebra, sometimes I would ask her if she needed assistance. Then I would look at the problem and ask her to explain it to me first. Ha! Math is taught so differently now than it was 30 years ago. I was hoping geometry, in which I was particularly strong, would give me an opportunity to be of assistance (if needed) again. I’m not so sure. So she got out her homework and dove in, while I ran out to buy more school supplies (the lists keep coming!). When I returned, I discovered she had completed quite a few problems but when she got stuck on one, she was paralyzed. She just stopped. She didn’t move on to another question she could do. She didn’t get our her science while she waited for me. This kind of thing doesn’t occur to her.

We got past that question and she resumed, and I went into the other room to work. I returned, and the very same thing had happened again despite the conversation we just had regarding what to do in such a moment.

Eventually she finished her math and went on to science. The assignment? read a chapter and take notes. NOOOO! She can read quickly, but the note-taking is challenging, and she is very resistant. It’s now time for bed (early bedtime for my reluctant early-riser). She finally finished the reading but couldn’t attack the notes. And I was mad. Mad at her for waiting until the last minute to do her work, and mad at myself for letting it happen. And I was frustrated with the entire process. I can wax poetically about how much I love Maddie just as she is, but in times like this I feel my body tense up and my brain feels full and the frustration and anxiety are overhwelming. I’m exhausted. Done. Over it. Maybe I’ll change my name and run away and live on the beach forever. I happen to know a few other moms who might want to join me. It would be so easy and relaxing!

She went to bed without having taken any notes. What could I do? While most kids would be probably just stay up late and complete their work, allowing Maddie to do that just opens another can of worms. The mornings are hard enough without a late night. So she went to bed without completing her weekend homework. Ugh. I am counting on this stuff to fall into place, at least a little bit, this year. Boarding school is rearing its head in my mind. I haven’t thought about it much the last couple weeks, but I think it’s time for me to at least make a plan. Just in case.

There were a couple of factors leading up to the problem tonight. One is Maddie is truly unable to estimate the amount of time a task will take. You know how you could guess the time of day within maybe an hour or half hour? She couldn’t even take a guess. If she has 15 minutes to take a shower, she will have no idea how to make that happen. You would think that a clock nearby might help, but she would have to actually look at it. She doesn’t even think of it. So estimating how much time she would need to complete her homework is impossible. Ten minutes or two hours? She doesn’t know. It certainly is difficult to make any plans if you don’t even have a clue. The other problem is her inability (and clearly lack of motivation) to seek out information to help her complete a task. So when she got stumped, she didn’t call out to me for help. She just stopped until I happened to return. So much time wasted without any time to waste.

And then there were the distractions. The cat came in. Distraction. My husband and son returned from a weekend trip. Distraction. The dog was cute. Distraction. An opened drawer, a sound outside, a misplaced pencil (get up and get another one!). All distractions. She is at times able to focus and really perform, and other times are much like this evening.

Unfortunately I was also tired, and eager for her to get to bed because of the inevitable morning nightmare. At least if she gets to be early we have a chance that I won’t lose my mind before 7:00 in the morning.

So tonight, although I adore this child of mine, I wished she had thought ahead, worked diligently, made good decisions, engaged in problem solving, and done this all on her own volition. I didn’t want to spend several hours on a Sunday evening micromanaging her homework. I’m feeling a bit discouraged for the moment, and I’m dreading the start of another week in which the next five days might unfold just like tonight. I hope we have at least one good night. Two would be even better. I hope the week starts with a peaceful morning.

Here I am again, hoping for the best. But at the moment, not really expecting it. If tomorrow is a good day, my optimism will return. I just take it day by day, holding on to as much hope as I can.

No, I’m not going to give you any. Well, maybe a teeny bit.

If you are a parent of a special needs child, I’m sure you could write this blog post yourself. Actually, I bet all parents feel this way. But it’s especially applicable to us.

Notice to everyone: Your parenting knowledge doesn’t apply to us.

“Don’t let your child have so much screen time.”

I love the idea in theory, but Maddie actually needs to check out for a bit. It’s how her day will be OK. She also has a social life online that is hard for her to achieve in the real world. She actually has friends, and what’s cool is they’re from all over the world. She can be fully herself and isn’t judged or rejected. I suppose I could curtail it more than I do, but I’m doing my best and what works for our family.

“Make your child eat what you make. Don’t cater to picky eating habits.”

Maddie will literally not eat in that case. We love for her to try new things, but I have come to view her reluctance as actual fear. Because of her sensory issues, certain textures and strong tastes are unbearable for her. So I do the best I can within her limited range of acceptable foods. I hope someday she becomes more able to tolerate new sensations in her mouth.

“Kids just need blah blah blah. You just need to blah blah blah. Make a chart, take this away, give her that. You’re too accommodating, you need to be stricter, make charts, have a prize basket…”

My husband and I have heard it all. We’ve also tried it all. I don’t know that anybody really appreciates unsolicited parenting advice, but for parents of special needs, it can be particularly unhelpful. Can a car mechanic fix a plane engine? Maybe or maybe not. Cars and planes both have engines, but they don’t work the same way. So would you let a car mechanic tell you how to fix your plane? Probably not.

And not only do we have a plane, we have one that’s different from all the other planes out there. She requires a number of plane specialists to all advise her plane caretakers on what to do. And still much of the time that magic one-of-a-kind plane does her own thing and baffles us all.

Once a very close friend was trying to be helpful, making suggestions for how to discipline Maddie. It was during a particularly difficult time when Maddie’s difficulty understanding and expressing her own emotions resulted in some aggressive behavior, usually directed at me. I was exhausted, frustrated, defeated, demoralized, sad, and even traumatized. I know the advice came from a place of love, but what we needed more than advice was compassion.

Jake finally shut down that topic with one short statement, “We see a lot of professionals.” Yes we do! Psychiatrists, psychologists, social group facilitators, speech therapists, school counselors, school psychologists, special ed teachers, occupational therapists. Your kids look easy to us because if you follow all the advice in parenting books, your strategies might work! But we have a kid for whom there is no manual. If there WAS a manual we would have to read it over and over again because everything changes from one day to the next. Maybe it could be an “if this….then that” kind of a thing, an interactive book or a video game.

“Ooooooh!” we could all say. “THAT’S what we should do!”

I never offer parenting advice to other parents of special needs kids because I know our families are different and our kids are different. I do share my own experiences, though, in case somebody’s interested. I might pass on the name of the social thinking teacher because she’s so so wonderful and maybe you’re interested. I might say, “I wish I had gotten a full neuropsych evaluation instead of relying on the school to do it” because I do wish that. I might also say, “I wish I had done lots of boring stuff with my kids when they were little so they could go out and be bored and it wouldn’t be a big deal.” Those are my own lessons. Take them or leave them. I don’t know what you’re doing or what you’re not doing or what you should or shouldn’t be doing. Beats me. You’re probably doing a really great job. I don’t know what I’m doing half the time. Or maybe three quarters of the time. How can I tell anybody else what to do?

But here is that teeny bit of advice advice I do feel comfortable giving:

Trust that you are the expert. You know your child better than anybody. You might need guidance for getting the services you need, but don’t let anybody tell you who your kid is. Follow your gut, moms and dads! You’re doing a good job just by loving and advocating for your kid. You recognize you don’t know everything, and that’s okay. You keep trying. Your kids are lucky to have you.

Okay, one more teeny but important piece of advice.

Recently I was out with a very good friend. We’ve known each other since Maddie was a baby. She has been there for everything. She doesn’t pretend to know what my life is like. She has her own life challenges. We just love each other and support each other.

“What you need to do,” she began, “is take care of yourself.” She told me I’ve spent so many years taking care of everybody else, it’s time for me.

Just what I needed. One sentence that expressed so much. I was so grateful.

“I get a lot of advice,” I responded, “and a lot of it upsets me.” I could see her face drop. She thought she’d crossed a line. I grabbed her hand and looked her in the eyes. “But that is really good advice. Thank you.”

So there you have it, all my wonderful advice right there. Trust yourself and be kind to yourself.

 

Sometimes I’m asked when and how I knew Maddie had autism. The truth is, I didn’t know at all. As I mentioned in yesterday’s post, it was the psychologist that she met with weekly who gave us the diagnosis. Maddie had been seeing Dr. W for about a year when, at a routine parent meeting, the A-word first came up. Maddie was nearly 10.

I have to admit at first I felt as thought I’d been kicked in the gut. Despite all of the developmental challenges we’d faced together over all those years, my husband and I always shared the same view: Maddie was just a little behind. With quite a bit of hard work on my part and hers, and regular visits to occupational therapists, speech therapists, social groups, and her psychologist (and eventually a psychiatrist), we believed she would catch up eventually. Our philosophy was very glass-half-full. It wasn’t easy, but for many years I just thought, “It just means I have work to do.” I didn’t believe her future was at risk. It would all just come a bit later.

But as the years progressed, the development gap widened. Her intellectual capabilities were never in question, but her social skills were lacking, and she clearly had some trouble interpreting the behavior of others.

When she was maybe five years old, we were at a local play area. There was a boy of similar age with whom she really wanted to engage, but she wasn’t very skilled at it. Still, she just played near him, trying to get some reciprocity. This little guy was kind of mean, though. He was insulting and rude, but Maddie kept referring to him as her “friend.” As lovely as it may seem for a person to be immune to abuse, it was painful to watch her be mistreated over and over and not see what was happening. In fifth grade, she gave some boys at her table a few of her collectible erasers. These boys were not her friends, but Maddie has always been generous to a fault. Then the boys defaced them with gruesome details. She was not offended, but I sure was. Maybe the boys were just goofing around, but I thought they were making a statement.

Throughout elementary school, she struggled to cope. She didn’t complain or cry, but she didn’t exactly fit in with the kids and with the demands of school. She did OK, but lots of accommodations were required, and every year it seemed we were starting all over again with the teachers and with Maddie. What can we do to address her attention issues? Should we curtail her workload?

The question should have been, Why doesn’t she have an IEP? Because, believe it or not, despite entering school with an IEP because of her speech delays, she was considered ineligible at the end of kindergarten. No more extra help even though she desperately needed it.

So on Diagnosis Day, as I now call it, I was first distressed at the news, but then I very quickly changed my mindset. This word, autism – or Asperger’s, which was her actual diagnosis – was just a description of the Maddie I already knew. It didn’t change who she was. And having a diagnosis was actually going to be rather helpful. For one, I soon realized, I might be able to get her the services she desperately needs. Before that she just presented to some adults as a stubborn kid who refused to perform to her ability. But now, with that dreaded word, teachers would have some understanding. Also, I started to understand her better. And others would too.

My own clearer picture of my daughter came with some pain attached to regrets. My mind raced back to first grade, when homework became a part of our lives. The philosophy in our school district is that kids should have a little homework when they’re young, with increasing time requirements to prepare them for high school. I understand that on an intellectual level, but I sure hated that Maddie homework back then. First grade homework was expected to take about 10 minutes. It was very easy. Some simple math, perhaps, and spelling. Maddie is excellent and both, so it ought not to have been much trouble. But she absolutely could not focus, so those 10 minutes would become an hour. And I probably looked like an insane person before that hour was up. It was SO frustrating. The spelling involved putting two sounds together into a word. So, maybe the words of the day were “ight” words. There would be a list:  l + ight, r + ight, etc. All she had to do was put all the letters into one word. So easy! But this is how it went: she would write one letter, then pause and look at me. I would tell her to keep going. So she would write the next letter, then pause and look at me. I would say, “Write the whole word, and THEN look up at me.” But she just couldn’t, or wouldn’t as I understood her then. And then she would see one of our cats, and get up and pet it. This is how an hour passed. It was an hour of pure agony for me. Pushing her, sometimes yelling, freaking out. I just couldn’t understand why she wouldn’t just get through the work and be done. It was so easy!

Zoom ahead four years, and suddenly I understood. She had been doing the best she could. She didn’t have the ability to focus on a task like that. Her brain just didn’t work that way. She wasn’t being stubborn (although she certainly can be). It was all she could do. And I been losing my mind over it. Wow, did I have regret. And a little bit of anger that not one of the other gazillion professionals we worked with had ever suggested autism, or even that we get her evaluated.

It has been over five years since Diagnosis Day, and I’m still weirdly grateful for it. I’m not sure what Maddie’s adult life will look like, but my husband and I accept that uncertainty. We know she might need a lot of support from us, and we are completely prepared for it. Whatever works for Maddie is fine with us. Whether she can live on her own, or in a group home, or a nearby apartment with a fair amount of help from us, if she’s happy, we’re happy. She’s a great person with some wonderful gifts. She just happens to have Autism. And that’s OK.

I was so grateful yesterday for Maddie’s new school and the attendance rules that would be strictly enforced, giving me the support I need to help Maddie learn some discipline, and to, in difficult circumstances, “do it anyway.” So when Maddie called home at 9:30 this morning, I assumed she would be in tears, trying to process her disappointment, to make a final attempt at persuading me to change my mind.

I had told her I would pick her up if she got the thumbs up. I had assumed her teacher would enforce the attendance policy regarding excused and unexcused absences, but it turns out her teacher is a kind, compassionate person. So when she presented her situation to him this morning, he kindly checked with the appropriate person, and said, given this was a once-in-a-lifetime opportunity, that it could be considered a sick day and she could go. “Alright,” I said, but I was actually thinking, “Oh crap.”

So, first I called my sisters who were on their way (separately) from further north. They would be in a better position to pick up Maddie, but both cars were inching along on a jam-packed freeway. There wouldn’t be time for them to make a detour to pick her up. Okay, Uber is handy, I thought. I grabbed my phone and made a request, then called Maddie with the information. A few minutes later, the driver cancelled. So I tried again, and gave Maddie the new information. Then, a little while later, another cancellation. A third failed Uber request later, and it was too late. We were catching the ferry and I just couldn’t get her to the terminal.

In the meantime, my mom and sister and I had all arrived at the ferry terminal after parking probably a mile away and walking. We were running out of time. And my other sister and her daughter were having no luck finding parking anywhere in the vicinity. She was frustrated and panicked and wanting a solution, but I just didn’t have one. Nobody knew what to do for her. And time was really running out.

For a moment, I thought perhaps the solution was to meet up and drive into San Francisco instead. We could all fit in my ginormous car. But then it occurred to me that traffic and parking might continue to be a problem, and maybe we’d get all the way over to the ballpark and still be screwed.

So as the boarding window was about to come to a close, and only half of our group had arrived, I had to make one final call to Maddie, who now had been waiting in front of the school for 45 minutes waiting for a ride.

“I’m so sorry, Maddie, but I just can’t get you over here. You’re going to have to go back to class.” She could not believe it, and, as usual, she had a bunch of potential solutions that just weren’t workable. “I’m really really sorry, Maddie, ” I said. “I have tried for the last hour to make it work and I just couldn’t do it. I’m so sorry.” She was upset and wanted to stay on the phone, but there really wasn’t anything else for me to say. My phone was about to die anyway.

So one of my sisters, my mom, and I got on the ferry with heavy hearts. I felt terrible about the emotional roller coaster Maddie had experienced. If only I had communicated with her teacher so we could have an understanding. It never occurred to me that this new high school would say, “Sure! Take the day off!”  I had assumed he would say no.

It was too hot at the game, and even though the Giants were winning, and despite some exciting plays from both the offense and defense, I just couldn’t shake the anxiety that had come from the events of the morning.  I love baseball. I love the Giants. I love AT&T Park. It really is one of my happy places, even when the game isn’t going our way. It’s a beautiful park, and our high-up seats were perfectly oriented for not only a clear view of home plate, but also of the bay. Its’ magical. So when Madison Bumgarner made a highlight-worthy play at first, I missed it. I was preoccupied. I did see the replay, though.  I would cheer at the appropriate moments, but after a few seconds, I just sank back into my sadness.

I felt like responsible for the whole thing. Responsible for the fiasco with Maddie, and even somehow responsible for my other sister and her daughter wasting half their day trying and failing to go to the game with us. How I had any impact on the traffic and parking I don’t know, but I just felt as though, somehow, it was my fault.

So when one minor frustration got in my way, I snapped at my sister. I never do that. We are close and always kind to each other. I was so upset at myself.

And then it happened. I burst into tears. I can’t remember the last time I cried over my own life. I’ll cry at a sappy commercial, but for some reason I have become much more emotionally reserved about my own circumstances. I don’t know why. But now, there it was. A lot of inner turmoil had bubbled to the surface. I cried for maybe a minute, and then forged on.

About half way through the game, I found my anxiety building. What happened at school after my last phone call? Did she go back to class (I did call her teacher so he would expect her)? Would she be angry when I got home? Would I be able to get her to do her homework after a terrible day like that?

So, I spoke up, and we left at the end of the fifth inning. All the way home, I speculated about the ordeal that awaited my return.

When I finally saw Maddie, she was in her room. Happy. Relaxed. “Did the Giants win?” she asked.

“Yes, they did,” I answered and then told her how hot it had been and that her cousin never made it, nor did we even make it in time to see her former classmates sing.

Her reply: “Whatever!”

Well, I should have seen that coming. After a day of agonizing, I was reminded of one of Maddie’s greatest strengths: Nothing gets her down for long. She has always been that way. When she was new to walking, she fell down over and over and over again. She toppled over so frequently it was sometimes hard to watch. But she always got right up and forged ahead. Once in awhile, I could see her feeling a little defeated, and a tear might come to her eye. But a moment later she was back at it. Once she fell off a tire swing in a pretty dramatic fashion, but instead of running away crying, she wanted to get back on. Right on, Maddie.

So you know what I learned today? A bunch of stuff. First, Mr. L is a good man. Second, I shouldn’t have assumed how he would reply to Maddie’s request. Communication is key! Third, Maddie is awesome. I already knew that, but it was a good reminder today. She bounces back like nobody else I know. Rather than dwelling on what she didn’t have today, she lived in the moment and made the best of it.

Ironically, though, it’s her rubbery constitution that makes these lessons so difficult to teach. Next time something important is at stake, I don’t know if she’ll remember the disappointment she felt this morning because it was so soon gone.

Only time will tell. I will keep trying to reinforce the message. I will keep trying to teach her grit. I will keep telling myself I’m doing OK. Tomorrow is a new day. I will try to make the best of it.

This week my dear daughter was tired. So very tired. School just started, and it’s hard enough to get back on schedule for most people after a summer of staying up late and sleeping in, but Maddie went to the extreme. She was staying up until one, two or even three o’clock in the morning, and sleeping in often past noon. This is a kid who functions best on a pretty regimented sleep schedule, but I’m so tired of managing that, I needed a summer break too. And now we are paying for it, especially with the new 6:00 a.m. rise time to be ready for a 7:00 pickup.

So when I woke her up Tuesday morning and she wouldn’t get out of bed, I wasn’t surprised. But I was kind of surprised, and disappointed, when I reminded her about Thursday’s big event and she remained unmoved. Today is Thursday, and it’s the day the students from her previous school are singing the National Anthem at the Giants’ game. She was going to participate. Missing school for any reason other than illness or the death of an immediate family member is considered unexcused, and the rules are clear on that. A student has about three per semester before the hammer comes down. The consequences can be significant: either a lower grade or a loss of credit, requiring summer school to make it up. That is a very big deal. So given that 5 days into the school year, Maddie had already used up one unexcused absence, I just couldn’t in good conscience allow her to take another one in the same week.

Consistent with Maddie’s behavior in the 15 years leading up to the moment, the now didn’t really connect with later. Not going to sing at the Giants game Thursday? Eh. Who cares? Not going to the Giants game today? Hey wait a minute!  I didn’t think you MEANT that! Now I don’t like it! Such is the nature of consequences. They happen. Eventually. That is the big disconnect within her thinking. And that makes motivating her so darned difficult, even impossible (despite all my grit!).

Ever the optimist, though, Maddie believed that if only the powers that be at her school knew about this once-in-a-lifetime opportunity, they would understand and send her off with happy waves and well wishes. They just needed the information. I assured her that this occasion would not fall within the parameters of an excused absence, but she persisted. So last night I capitulated a little, “Okay. If you can get a teacher or other adult to call me in the morning, and tell me your absence will be excused, I will pick you up. But you have to go to school and talk to somebody.”  At the time of this conversation last night, it was too late, fortunately, to reach anybody, and she leaves home in the morning before anybody’s at school, so there was no other way to have that conversation. Of course, I was certain she would be disappointed.

This morning she had trouble getting up, but she wasn’t resistant and she was hopeful and bright-eyed about the good news that would surely await her when she arrived at school and was greeted by her teacher. When would I be picking her up? she wondered. We’ll work that out, I answered.

So it is now 8:15. She arrived at school maybe 20 minutes ago, ready to make her case, ready to pack it up shortly thereafter and catch the ferry to the ballpark for a big day of fun. But there has been no phone call. I picture a dejected young lady with a long day ahead of her, feeling the disappointment in her body and her soul. It breaks my heart, but I know this was necessary. Clearly this was a lesson she needed to learn–that there are rules to follow and consequences when you break them–but I so wish that lesson could have come another day. A group of us, including her cousin/best friend, is still going. We’ll take the ferry, see Maddie’s former schoolmates sing, and root for our home team. It’s a beautiful sunny day, but it will be clouded with sadness that Maddie isn’t there.

To me these are the hardest moments of parenting any child: when you have to break their heart (and maybe your own) for a vital lesson to be taught. I’ve had a hard time following through at times. My strength as a parent has lain more in my flexibility, my ability to read my children and change course as needed. In many ways I think that’s been vital to the happiness of our unique family and to the close, trusting relationships I have developed with my children. But it has probably come at a cost, too.. And now I’m “cracking down,” as I like to say. I have the new school to thank for that.

So today I’m feeling so many things: Exhausted, for one. But also sad for Maddie that she’s missing out on such a special event; proud of myself for following through even though I didn’t really want to; grateful that Maddie’s at a school that holds her accountable; hopeful that perhaps the consequences are so big that the lesson will stick this time; and anticipating a fun day with my family despite this disappointing turn of events.

My husband just put the right spin on this: Even though it’s a sad day, I should actually feel good about the opportunity to impress upon her the reality of delayed consequences, a concept that has long eluded her. So I will tell myself that over and over today. I will focus on hope for the future while making the most of today.

Go Giants.

When you have a kid with autism, it’s vital to connect with other parents of autistic kids. Being a mom can be lonely business, particularly when you don’t work outside the home. It’s very isolating. Have an autistic child, and that isolation is almost unbearable. And sadly, you can feel most alone when you’re with other people because the the difference in your experience is magnified.

When Maddie was a baby, I formed a small mother’s group. We all had babies within a few months of each other. We got together each week for lunch, which was really easy when our babies just slept in their little carriers. It got more challenging and more fun when the babies starting walking and talking and sort of interacting. As you know, Maddie’s milestones didn’t come anywhere near matching the expected timelines. She didn’t smile much, but she was content. She didn’t sit up successfully until eight months, roll over until 10 months or crawl until 12 months. Meanwhile the other kids were mostly on track, busy little people with places to go. I wasn’t especially upset because I just figured she needed a little more time. Whatever.

But it was the talking that really set us apart. “Guess what Sydney said yesterday!” “Jason said the funniest thing!” My reply, half in jest: “Maddie screamed!” I wasn’t especially worried, but as time went on the gap widened, and I was just sad. I was missing out on all those fun things, all those rewards that finally come as your child becomes more and more interactive. If I was at the grocery store and a woman in line behind me tried in vain to get a smile out of my stone-faced kid, I would say, apologetically, “It’s not you.” I accepted it, but I was just a little sad.

And now, as girls her age are becoming young women, Maddie is still largely a girl in a woman’s body. While other parents are worried about whether their kids are getting straight A’s or making the competitive soccer team or being fulfilled in their friendships or going vegetarian, we are still at what feels like square one. (Okay, maybe not one, but you get the idea.) Those are valid things concerns. We all love our children and want the best for them, so wherever they are, we want to help them grow. Nobody understands that better than a parent of both a “neuro-typical” child and a child on the spectrum. For my son, I get to worry about that stuff. He’s super self-sufficient, a bright and motivated student. He has a group of wonderful friends with whom he rides bikes and play video games and shoots hoops and laughs hysterically. He has a full life and most certainly has everything he needs. There have been a couple of bullying situations we’ve had to handle, and those were rough, but otherwise it’s pretty smooth sailing (not that he’s not demanding in his own way). So I do get to worry about the dynamic between his friends, or did he get an B+ or A- in a class, or why he doesn’t want to play Little League anymore.

On the other hand, we have plenty of food to eat, everybody is healthy, and we will never be without a home. So my worries are all relative. I know that. I also know that on the outside my life probably looks pretty blessed, and compared to many people on this earth, it absolutely is. But this is the life I lead, and I’m trying my best to navigate it as gracefully and gratefully, as openly and honestly, and authentically as I can.

One of the most important aspects of my life is having meaningful friendships with so many women I admire, who are kind and thoughtful and intelligent and funny and helpful and devoted moms, many who have achieved or continue to achieve great things outside the family realm, and all of whom achieve great things within it. I love them. I think the quality of my friends as human beings must reflect me, and that is so comforting. And they understand, they really do. But understanding and living it are two different things. The whole “walk a mile in his shoes” kind of thing. I do have a couple of friends who truly get it because of their own parenting challenges, and we know each other in a way nobody else does. I’m so grateful for that.

There is an organization in our school district called It Takes a Village PTA, a school-district-wide organization for parents of special needs kids to congregate and support each other as we all walk through the public school system. I never joined. I resisted for many years because my child didn’t have an IEP (even though she most certainly should have) and didn’t yet have a diagnosis. She was different and a challenge, but I didn’t think of her as a special needs kid exactly. So I didn’t connect with a group that probably would have helped me so much. Maddie was diagnosed by her psychologist when she was 9 1/2. I was caught a bit by surprise because we hadn’t sought out an evaluation, but Maddie and her psychologist spent enough time together that the diagnosis became clear. (A story for another post, for sure!)

All of a sudden I went from being the parent of a challenging kid to the mom of a child with a diagnosis. Then the confusion, sadness, fear, and general feeling of being lost set in. In a moment I went from being a mom to being the mom of an autistic kid. What an unexpected turn of events.

In the meantime, I have floundered in a way very much alone, bolstered in part by my sister who has an autistic child herself. We understand each other even though our daughters couldn’t be more opposite. I’m grateful for her. And for my whole family, who know Maddie so well and have a kind of understanding only family can have. My husband gets it, of course, but he’s not in the trenches like I am. On a day like today, when I feel challenged beyond my capabilities, when I am at the end of my rope, I can feel pretty alone.

I suppose that’s what this blog is for. It’s a way to connect us all, whether we walk in each other’s shoes or not. I hope I’ve made a connection or two today.

It’s the second week of Maddie’s sophomore year at her new high school and we’re just now hopping on the homework train. It’s a bumpy ride and the destination is unclear, but there is no avoiding embarking on it. If only we could hop off! That certainly is what Maddie wants to do, and she’d willingly jump and roll if she could just have screen time afterwards.

The big challenge today was in science. It’s not the content, as usual, but the output that’s the problem. First she had to do some reading and answer questions. She completed that with ease. Then came the challenging part: taking notes from the text book. Maddie has never had to take notes before. Ever. Not from a lecture, not from a book. This is all new territory for her. Plus the text is much more sophisticated than the ones she’d used at her special private school.

Maddie found this particular task unappealing and pointless. I tried to help, her but I soon remembered that my note-taking approach was always overkill. I could write quickly, so I would write down not just the most salient points, but every single thing I could manage to get down on paper. Copious is the word that comes to mind. So I wasn’t the best coach for this particular skill set. But she really wanted my help, so I did my best.

At first she was upset because the assignment was challenging, and then she decided that taking notes was a waste of her energy because her memory is so sharp. She’s right about her memory. Her mind is a vault. She has never once studied for a test and aces them every time. When she was three, we’d play the memory game in which you try to find a pair of cards by turning two over and them remember which one was where. I never beat her. Not once. So It really is hard to argue that she needs to change her approach to learning.

However, note taking is required and it’s graded. That’s where I lost her. We went around and around about why she didn’t think it was necessary and why I was quite certain that it was. She didn’t want to do it because it was hard and then came up with what she thought sounded like a reasonable argument for her position. I said, “Well, the fact that it’s hard for you is precisely why you need to do it.” Kids love it when their parents stay that stuff! My favorite refrain from my parents was, “Life’s not fair.” Oh, that just made my blood boil. Then I grew up and found out that’s about the truest statement a person can make. Maybe Maddie will one day tell her child the same little nuggets of wisdom that she loathed coming out of my mouth today.

So eventually we came to this: She would show her teacher the notes she’d done so far, tell him she was struggling, and ask if she really had to take notes given that she’s always done well without them. “Well, if he says you don’t have to, that’s fine. But if he says you do (and I’m sure he will), what will you say?” “Okay?” “How about asking him to look at what you’ve done and give you some pointers so you can learn? After all that’s what school is for: learning.” She was surprisingly agreeable. We shall see if she follows through. I made her practice with me and she remembered (of course) everything and was able to communicate effectively. Fortunately she’s not afraid, so as long as she remembers, I have faith that she will have that conversation. That in itself is a great lesson in self-advocating piled on upon this year’s big lesson of “Do it anyway.”

Unfortunately, I told her, school is full of requirements that may not seem reasonable, but she has to do them anyway. She will be learning the material, but she will also be learning how to learn, I told her. Again with the “do it anyway” mantra. That’s the big lesson! It really is!

I can’t even imagine how many times I’ve used that phrase. I explained yesterday that probably half the students at school were too tired to get up in the morning, but they did it anyway. I told her most of what I do all day I don’t really want to do (laundry! dishes! scooping dog poop!), but I do it anyway. That’s how life is, I explained. You have to just do it anyway. “Have grit,” she said.

Oh how I’m loving that word right now. On the first day of school, instead of classes there were a couple speakers and a barbecue. Well, Maddie didn’t eat anything (she’s very picky), but she definitely absorbed something from one of the speakers. His name is Kevin Laue, and he was born missing half of an arm. He’s very tall — 6’11” — but with only one arm he is an unlikely basketball star. According to Maddie, when Kevin was in middle school, he tried out for the basketball team but was cut because, as the coach told him, “Basketball is a sport for people with two arms.” Now he is a scholarship player at Manhattan college. And the theme of his talk was “grit.” What a perfect example he is for the kids! He has a rather noticeable disadvantage, some would say an absolute deal-breaker, but his determination and work ethic are enough to make up for it. Who, after meeting him, can now say, “I can’t do it”? Well, it might be hard, but it’s not impossible. That’s what I always say to my kids when something is difficult. “But is it impossible?” The answer, most likely, is no.

And that’s a lesson I can take with along with me throughout this journey. Is it hard? Yes it most certainly is. But is it impossible? Probably not. Not if I have grit.

This is a 13-minute TED Talk on the history of Autism, including a compelling explanation for the rise in diagnoses and a brief discussion of how to look at autism differently than we currently do. Very interesting.

Thanks to Shonalie for turning me on to this.

<http://www.kqed.org/a/forum/R201508251000&gt;