The Year of Living Hopefully

When Maddie was born, I almost never put her down during the day. I nursed her, she slept, repeat. (Not to mention a gazilion diaper changes.) I am not exaggerating when I say I wasn’t even sure how to get up and get a glass of water or a snack or go to the bathroom. After all, I had a BABY to hold! I can’t get up. I’m holding the baby! I guess my version of attachment parenting was to be literally attached.

At night I’d put her down to sleep, but even then she was right next to me. She never accepted a bottle, and I breastfeed her for nearly 18 months. In the meantime, she started drinking water from a sippy cup and eating solid food, but until she was a full year, she would wake up multiple times per night to breastfeed. I finally had to ween her off the night feeding or I’d lose my mind. Waking up five times every night isn’t good for a person’s mental health.

I remember those early days so clearly. On rare occasions, we’d leave our precious child in the capable hands of one her grandmas. I knew she was safe and loved, but the pull she had on me was so powerful. After about an hour of separation, anxiety would start niggling at me. I tried to ignore it for the sake of having a date, however brief, with my husband. At the ninety-minute mark, though, I couldn’t take it anymore and home we went. It may have been largely biological at first: my body telling me it was time to feed her.

When Maddie was three years old, she was enrolled in a program for young children with speech delays. She went to a special preschool in another town, about 20 minutes from our house. It was the first time ever that she had a life that wasn’t connected to mine. It was only two and a half hours a day, but I wanted so badly to know what was going on. She wasn’t talking much then, so it remained a mystery. It was a strange experience. It got even stranger when my little girl started taking the bus. I would put her in a car seat and wave goodbye, with a bus driver I didn’t know very well, off for a few hours without me. She absolutely loved her bus ride. and it turned out she was more ready for it than I could have imagined. Once she had a substitute driver who made a wrong turn, and she yelled, “I want to see my MOMMY!”  Wrong way, lady! In the meantime, though, I watched the clock, anxiously awaiting her return home. (In contrast, the day my son finally started preschool–only two days a week–and Maddie was in first grade, it was the greatest day of my life. Six whole hours a week to myself!)

And now, even though my kids are both teens, I notice that it’s hard for me to fully disconnect from my family, even when I’m gone. Wherever I am and whatever I’m doing, my mind is always on my kids, especially Maddie. It’s as if a part of me is still at home. Or maybe that tether that connected me to my children when they were young is still there. It’s just a lot longer.

When Maddie was 12 she went to sleep-away camp for the first time. She was so little and young for her age, but she was dying to go. I was excited about this camp, too. It’s a performing arts camp founded, owned and run by a man who is equally passionate about sports, performing, and special education. It’s not a special education camp at all, but his mission is to make it a place where all kids are accepted and individuality is celebrated. (FYI If you’re interested: <ucamps.org.> I highly recommend it!)

I was happy for Maddie, a bit trepidatious about the whole thing, and a tiny bit looking forward to a week with only one child. It’s so much easier to have only one. But I couldn’t enjoy it at all. I was so anxious the entire week, wondering if Maddie was coping well with the this new experience, hoping she was making friends, wearing deodorant, sleeping okay, getting up when she was supposed to, and generally getting along in a situation of which I was not a part. I was anxious and worried and sleepless and unsettled. There was that tether.

Five years ago my sisters and my mom and I started a tradition which involved a long weekend away for my mom’s birthday, which always falls on or near Memorial Day. That seemed like a good enough reason, I guess, for me to leave my family for a couple days. But the first few years were challenging as I would often get a call from my son because things weren’t going well with Maddie. My heart would be torn nearly in half, one side feeling utterly helpless and guilty for not being home to manage the situation, and the other side wanting to be fully present for my mom’s birthday weekend. In the end, I couldn’t do either one of those things: I couldn’t help with Maddie from 300 miles away, nor could I disengage enough to really enjoy my weekend away.

Even when I’m gone for a few hours, it’s likely I will get a phone call or text, especially from my son. A part of me loves hearing from him. Another part wishes I could just put my home life in a box and put it on a shelf for a few hours so I can truly escape. That seems okay, doesn’t it?

Last weekend my husband was away at a yoga retreat. It was a few hours away at a beautiful, rustic site where there’s no electricity. It’s truly a retreat. He thought about taking his phone anyway, but I encouraged him to leave it behind so he could have the experience as it is intended. He has a lot of responsibility at work, and it can be stressful. This was an opportunity to be totally separated from everything and just relax.

Then it occurred to me. This weekend I get to go away with my sister. I’m so looking forward to my trip! I’ll miss my family but, wow, could I use a break. And you know how I’m going to make sure I get one? I’m going to turn off my phone. Of course I’ll think about my family, and I’m sure I’ll talk about them a lot, but I won’t have to manage anything from far away. I won’t have to hear about conflicts or complaints. I won’t have even have to answer questions! I have a capable husband and two big kids. They can do it.

I’m excited about my decision. I’m also a bit nervous. I’ve never done that before. Every once in awhile I forget my cell phone when I leave the house, and upon realizing that, I feel at first panic and then a secret sense of relief.

But this weekend I’ll still have a hard time not wondering, “Did the kids do their homework? Did Henry get to the soccer game on time? Did Maddie take a shower and brush her hair? Did she get enough sleep? Will she get up for school Monday? What awaits me when I return? ”

I’m pretty sure all moms feel that way. I think I worry a little more because Maddie requires so much extra parenting. And I’m used to handling most of it. But I have to remember: Even if things don’t go exactly as I hope, it’s okay. I have to let go of my expectations. Everyone will be fine, even if nobody sleeps or they eat French Fries for every meal. It’s certainly not what I prefer, but everyone will be OK. Even if Maddie doesn’t shower or brush her hair or go to school. Ugh. I’m not so sure about that last one. I have to work on that.

We shall see. I need a few days to disconnect. Or maybe the word is disengage, for how can I ever be truly disconnected from my kids?

I hope I can do it. I hope you can too someday.

This one is kind of hard to write. When I started this blog, I committed to being honest, open, real and vulnerable. I want to show the good times and the bad, the hope and the despair, the struggles and victories and defeats as my family makes our way through this important year, all the while focusing on hope. I want to tell the story of my daughter and me mostly unfiltered. But there are some topics I am somewhat reluctant to share. I may not share everything. I’m not sure. There have been some shockingly difficult times, and I don’t want to hang my sweet daughter out to dry. But some topics are too important for me to omit. This is one of them. And it has to do with my friends.

I live in a truly special community in Northern California. It’s a magical hamlet, and its residents come here for the natural beauty, the proximity to San Francisco, and the stellar school system. Parents here are committed to their children’s education and well-being. I have made the most wonderful circle of friends: smart, strong, caring, funny, talented, creative, kind women who share my values as a human being and as a parent. This is what you get where I live, for the most part. I am so grateful.

This is my message to them:

The most important thing you can do for me is to care about my children. I know you do. You are always there to help with a ride or bring us food after my surgery or let me cry on your shoulder. You appreciate the quirks of both my kids. You seem to get them, and even if you don’t, you love them anyway.

But there is another thing I wanted to ask of you all this time, and that is to include my child. To have your wonderful children reach out to her once in awhile. It’s good for my child, and it’s good for yours. Befriending my autistic child, or even just reaching out once in awhile, benefits both kids. My daughter will feel a sense of belonging, and your child will learn empathy and compassion. I’m not saying your child isn’t already empathetic and compassionate, but special needs people are a unique set of individuals who require more from other people, more openness and acceptance, more selfless friendships.

My son is three years behind my daughter in school. When he started kindergarten, she was in third grade, and she had passed the point where kids invite the whole class to birthday parties. For the first couple of years, I could use that to explain the wide chasm between her social life and his. As time went on, my son still had quite a few friends and an active social life, while Maddie had really only a single friend who wasn’t social at all (I don’t know if it was her or her parents who were at the root of that). So every weekend my son was having multiple parties and play dates, and Maddie was at home. She likes her alone time much more than my son, who is by nature a very social person, but she is also very social at heart; she just lacked the skills required to make a social life happen.

I have many friends with daughters her age, who are intelligent, fun, hard-working, talented, social girls. How I would have loved for them, once in awhile, to invite her over or include her in a party. I understand she could do odd things once in awhile, but nobody could change that. The one thing we could have changed was how she felt in the world at large, particularly at school. Although, come to think of it, perhaps more practice in social situations with neuro-typical kids might have helped curb those behaviors. I will never know.

It’s important to note that the girls at her elementary school were very kind to her. From her first day in kindergarten, my greatest fear was that she would be bullied. She was such an easy target back then, partially because she probably would have been oblivious. But because of my lovely community and the parents here, the girls in particular seemed in fact to feel protective of her. She was petite and emotionally young, so I suspect a maternal instinct a large factor. I was so grateful!

But I never asked my friends to help me with her social life. I just couldn’t. It seemed like too much to ask. Also I guess I hoped people would figure it out for themselves. And that’s not fair to anybody. How is anybody without a special needs kid expected to know what Maddie would have needed? I’m not saying nobody ever did anything (a big thank you to those friends!). But for the most part, once she started school, Maddie and I were isolated when it came to socializing with other kids.

Even Maddie’s birthday parties were terribly stressful for me, so much so that I would procrastinate and procrastinate until maybe we were three months late. Why? Because I was terrified that nobody would come. And then my sweet party-loving girl would know something I wasn’t ready for her to know. I wanted her life to be smooth and happy and for her to feel like she belonged. What a frightening proposition to have a failed party announce so dramatically that she didn’t in fact belong.

So here is my message to you: If you have a friend with a “different” child, please consider having your child befriend them in some small way, even it’s a something small and often, or big and infrequent. These things add up. It helps the parents, the special needs child, and your child too. Your child will learn that “different” people are worth knowing, that noticing the needs of other people is important, that selflessness is a virtue that you encourage and admire.

I’m beyond grateful for the friendships I have. I can’t believe my good fortune that I am surrounded by this truly inspiring group of people. I hope you all have that, too. And I hope that you can do what I didn’t, and ask for what you want for your own child. Don’t be afraid. You might not get it, but on the other hand, you might.

Hello readers! 

Today I have invited my sister Marie Millard to write a guest blog. She’s a creative and talented fiction writer and blogger. She also has a 14-year-old daughter (my daughter’s BFF) who has autism. I adore them both.

You can buy her book Anaheim Tales on Amazon, and read her blogs at:

<https://wereyoualwaysthisfunny.wordpress.com&gt;

<https://mlmillard.wordpress.com&gt;

Enjoy!

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Dear Life, Please Imitate Art

Before I self-published my novella, I knew that I should try to develop a following through blogging, but I didn’t know what to blog about. Blogs about writing are a dime a dozen, even figuring for inflation since that phrase was coined,* but I didn’t know much about anything else. Anyone want to hear about my trombone performance degree? I didn’t think so.

I kept pushing aside the obvious answer. The obvious answer was parenting, and parenting a child with a specific, hot-topic diagnosis. That was something I knew all too much about.

But I knew that if I blogged about parenting, I would either limit myself to hilarious, palatable stories (my daughter wanting to be called “Eight,” for a few weeks, and my trying to yell “Kate” at the park so that I didn’t sound like, well, someone who would name her kid “Eight,” but making it sound enough like “Eight” that my daughter would respond) or I’d fall off the cliffs in the other direction, baring my naked soul and then regretting it (I had the drowning dream again).

And so I stuck with a writing blog. Few read it, and that’s okay. I prefer to spend time on my fiction, anyway. I’ve written several novels, but although I’m sending most of them out to agents and publishers, one of them I decided to put up on CreateSpace because it’s only 115 pages, and I knew no one would be interested in publishing a book that short.

Anaheim Tales began when I was reading The Canterbury Tales. Basically, in The Canterbury Tales, a bunch of people have a storytelling contest, many of them insulting each other through their fictional tales. I thought, “I’m going to write a version for and about modern day teens.” So I did, and one of the themes that emerged was that you can learn a lot about a person when they tell a fictional story.

One of the background characters in Anaheim Tales is a girl who doesn’t say much, who skips when she’s happy, and who loves kittens. The narrator, Geoffrey, notes that she seems younger than the rest of the seventeen-year-olds, even though she’s seventeen, too. But beyond that, I did not draw attention to her. I didn’t mention a diagnosis. I let the characters behave the way they chose (yes writers do that) and they in no way bullied or looked down on her. In fact, they tried a little harder to spare her feelings than I would have hoped.

It was only in writing this guest blog for my sister that I finally applied the theme “you can learn a lot about a person when they tell a fictional story” to myself. What did my book say about me**?  I may not have blogged about parenting, but hidden in Anaheim Tales is my deepest desire. A young-hearted girl, flitting around in the background dreaming of princesses and kittens, being treated with kindness and respect, as if “It’s no big deal. That’s the way we all treat her.” Dear Life, Please, please, imitate art.

*Dime? Coined? Never mind.

**Don’t say “that you’re a mediocre writer.” It might be true, but it’s not very nice.

I’ve written before about the importance of connecting with other parents of special needs kids. On days like yesterday I really feel it. It helps to feel a sisterhood or brotherhood with parents who have similar challenges, even if they’re not exactly the same.

Yesterday, though, I was feeling particularly challenged by the school refusal thing. A friend asked me, “Hasn’t the school had kids like Maddie who also refused to go to school?” My answer: “I don’t know.”

Throughout our experience with the public schools, it always appeared to me (and to my surprise) that Maddie just stumped her teachers. I thought for sure that the teachers who’d been working for 20 years or so must have seen it all. But she always presented as an enigma, and nobody knew what to do with her. Even at her special school, in which every single teacher has a credential in special education, she seemed to be a special challenge in some ways. I think it’s the dichotomy of her natural abilities and her failure to perform, and how her ability to perform fluctuates wildly from one day to the next . Even so, is she really the first kid like this?

When things go particularly awry, my best coping mechanism is to feel useful, to actually do something in an attempt to make even a minute change. So yesterday, when I was feeling especially defeated and somewhat hopeless, I spent much of my time trying to research boarding schools for teens with Asperger’s. It was a waste of a few hours. There are very few schools, and most of them also take kids with emotional and behavioral issues. I don’t think that’s the right environment for her. So that was an unsatisfying endeavor.

Then I changed course and Googled “my Asperger’s kid won’t go to school.” Maybe I’m jumping the gun on the boarding school thing, I thought. Maybe somebody else can shed light on a solution or at least their own experience. Most of the information about this phenomenon (called “school refusal”) focuses on social anxiety and other emotional factors, such as coping with bullying, that might contribute to attendance problems. I know Maddie. That’s not what’s going on. She’s tired in the morning, home is relaxing, and given the choice, she’d rather not do anything at all.  Well, she’d really prefer to watch TV or play Minecraft, but even though that was out of the question, staying home is just easier. I’m not saying the transition from a tiny special school to a bigger public school isn’t cause for some trepidation, but I am confident, as are her teachers, that she is more than ready for this. She just has to do it, and give herself time to adjust.

I eventually discovered a website called <myspergerschild.com>. I read its article about school refusal, and as I scrolled through the comments section, my heart nearly exploded. A mom wrote in about her own teenage son. He also refused to go to school, simply because he didn’t want to. Finally, a kid just like mine! Here is what she said:

My son is 15 with Asperger’s and also school refuses. I also do not think it is [social anxiety] – he just doesn’t want to go to school. He doesn’t see the point and no amount of discussion will change his mind. He is another one who is 6ft tall so there is no way you could get him there against his will (and I don’t think that would be appropriate even if I COULD just pick him up.)He currently attends a small support unit with only 10 other students and all the understanding you could give a child but some days he just doesn’t want to go in.There is no fear there for him, and no attachment problems as he happily would go to his friends’ houses. The way I see it, he weighs up rewards and costs. Some days he wants a reward (eg cinema trip) enough to go in, and on other days you could offer him £500 and he wouldn’t budge. Although he’s very clever, the promise of a good GCSE result seems too abstract and too far away to be a motivator at this moment in time. He thinks he can learn anything important and worth knowing,from a computer or the TV. Of course, none of this understanding actually helps get him into school or gets him the results he’s capable of or gets the LEA off our backs when he doesn’t attend! Also, being threatened with court action for non attendance makes life very stressful for us but makes no difference to him – he has AS, he would only notice when the internet gets cut off or his dinner wasn’t made!”

Seriously, this is Maddie (except she’s much shorter). The weighing of ewards and consequences and near immunity to both, the inability to grasp anything that’s delayed because that’s too abstract, the rigidity in her thinking.

I wish I could identify the writer. I want to talk to her. I want to hug her and thank her for speaking up. Even though she doesn’t offer any solutions, it feels so much less lonely knowing there’s somebody else out there with the exact same problem. It’s so comforting. She’s obviously in the UK somewhere, too far away to meet. I would bet there’s somebody who lives close by who is having a similar experience. I hope to find them. I hope we can help each other somehow.

So in the absence of a solution, I was at least given some peace in knowing we’re not the first, not the only. And then today happened. She got up and went to school.

I never thought of Maddie as having a disability, even after her Asperger’s diagnosis. So it came as a surprise to me when she used that word to describe herself.

When she started at the special private school a few years ago, she would come home and tell me “Ruby has ADD” or “Michael has dyslexia.” It reminded me of what it might be like to go to prison. “What are you in for?” I thought it was kind of funny, and I also loved the fact that the kids weren’t embarrassed to share these parts of themselves. They could be fully honest about their challenges and not fear being stigmatized or bullied or ignored. How refreshing!

So a year or so ago, when she referred to herself as having a “disability,” I was taken aback. “Disability?” I said. “I never think of you like that.” I really don’t. She is a kid who functions in a certain way, and has trouble in some areas, but I think it’s the prefix “dis” that really bothers me. It implies “can’t” and I have a hard time thinking that she is fully unable to do anything.

I’m not entirely sure at the moment if my attitude has served me–or Maddie–well.

When Maddie was in sixth grade, she was still in public school. She had gone to our lovely neighborhood public elementary school since kindergarten and was in her first year at the public middle school. And then the shit hit the fan. Academically she was literally failing, and socially she was struggling as well. Then one day she got in the car after school and said, “I don’t want to go to school anymore.” My heart sank. She had never said that before, and I never wanted to send her back there again. Home schooling was out of the question, so I immediately sought out an alternative.

My first choice was a private school with a sterling reputation in a nearby town. It’s a small, sweet school that does well accommodating kids who have learning differences. I absolutely loved it. So I rushed to complete the applications, wrote a heartfelt essay, and scheduled a visit for Maddie. She also fell in love.

I waited eagerly for the acceptance phone call, keeping my phone attached to me so I wouldn’t miss the good news. Well, it wasn’t good news. The board of admissions felt they couldn’t adequately provide the support she needed. I should have known. Her essay was no essay at all. Her handwriting looked like she was in first grade. And who knows what her teachers had said about her in their letters? Her teachers loved her, but she was an especially challenging student, particularly because she wasn’t getting any help. I was devastated. I sobbed and sobbed, heartbroken for me and for Maddie.

And then, maybe 10 minutes after that disappointing phone call, I realized something: This is information. And that information is Maddie needs more help than I thought. It was a startling epiphany, and I felt new sense of sadness and pain. I felt guilty for not having realized this before. After all, I’m so in-tuned with my children. How could I have not been more realistic? But as I tend to do, I moved onto the next thing. No use dwelling in sadness. I had heard of a special ed school nearby as well, but I had thought she was too advanced for that. In fact, it was a nearly perfect fit. And that’s where she went the following year.

Maybe if I had equated Asperger’s with “disability,” I would have moved her to a new school sooner. Perhaps I wouldn’t have wasted time with the public middle school and then trying to get her into the other private school. Perhaps I would have better recognized what Maddie can and can’t do.

I’ve just always thought of these “can’ts” as “can’t yets.” It’s that hope thing again.

Certainly there are times when I realize she just can’t do it, like when I give her three things to do and I have to write them down to help her remember. They are usually regular, everyday things like: Take shower, brush hair, do math. You would think I wouldn’t have to add “brush hair” after “take shower,” but if I don’t, she will never think of it. She can remember all the states, but she can’t remember to brush her hair. She actually can’t, at least not yet. Is that a disability? I don’t know. Probably.

She can’t always do her homework, or get up in the morning. She usually can’t try new foods (scary!) or remember to wash her face or put her dirty clothes in the hamper or watch the clock. But I still think of these as can’t yets.

Often in the course of a day, I go from hope to despair and back again. And maybe back again.  It’s an unpredictable, unstable emotional roller coaster ride of epic proportions. I suspect it’s a lifelong roller coaster. Can she or will she (insert abilities here)? It remains to be seen. In the meantime, I’m doing everything possible to get her to can.

You might have noticed that one of my mantras is “tomorrow is another day.”

Yesterday was so beautiful with my son taking up the charge to get his sister to school, and her recognizing the love that represented.

Forget all that. This morning she’s back to not going to school. Not because she’s tired, though. Instead, she now tells me that she doesn’t like this school because it’s not “close” like her previous school.

When I say “tomorrow is a new day,” I realize it might not necessarily be better than today. It might just be a new day with the same crap. Or worse. Today is a new, worse day.

The private school Maddie went to for the last three years has only 80 kids in 12 grades. About a third of the students are in the middle school as that’s when “the wheels come off,” as the admissions director told me. The high school is tiny, maybe eight kids per grade. And she was a star over there, academically ahead of most kids, full of spirit and sweetness, known and loved by all. I realized it was no small thing to remove her from that environment, where she really blossomed into a self-confident young lady. But this unusually small, close, sometimes overly indulgent community was precisely the reason she needed a change. The world isn’t like that school. She is 15, and I believed a slightly more challenging, although warm and accepting, environment, where she is still taken care of, was right. A place where she would fit in, have fun, and be held to a higher standard. I still think it’s the right choice. It’s a wonderful school where the kids pride themselves on their quirkiness, where acceptance is encouraged and expected. She also has a great special ed teacher almost half the time, and his class is a community unto itself. And she had some friends there already. Perfect!

Yesterday morning started out rough, but as usually happens, she ended up having a good day. She said those very words. She might have even said “great day.” She was cheerful and happy and easy. Then the morning comes, and she slides back down into this pit of despair. Tears and everything.

So after this morning’s pronouncement, I give her a long list of reasons why going to school is a good idea. Remember yesterday? You didn’t want to go and then you had a great day. It takes time to get used to a new school. You just have to find your niche. Going to school is legally required. Let’s talk to your teacher and he will help you. Okay, not him? How about a counselor? That’s their job. You don’t trust them? Why? This is the best school around here for you and we have to make it work. The only other option is a school that’s far away and you would live there not here. Do it for your brother! Even that doesn’t work. One day it did. The next day, nope!

She tells me yesterday wasn’t so great. She was lying about that, she says. I don’t believe that, but maybe that’s true. I don’t know.

Now what? I have emailed her teacher. I have emailed the educational consultant with whom I discussed boarding school. I can’t believe we’re two weeks in, and this is where we are. I need that plan B right now. I had intended to be prepared for this. And yet I’m not.

Tomorrow is a new day. Will it be better? I hate to say it, but probably not. I hope so, but I’m not optimistic. I don’t believe that things magically work out. You have to make them work out. There is effort involved in these things. But I’m not equipped for this. I don’t know how to make this one work out. I hate that more than anything. Hope is the theme this year, and I’m having trouble with it at the moment.

So I take some deep breaths and get to work.

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.