Month: October 2015

Tuesdays and Thursdays

Chris Irvine, Parent Coach2 Comments

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

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

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

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

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

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

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

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

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

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

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

“Why are you doing this?” I plead.

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

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

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

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

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

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

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

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

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

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

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

——————-

Fast forward 30 minutes.

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

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

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

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

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

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

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

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

“I don’t know.”

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

“Can I have my phone back?”

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

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

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

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

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

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

A Little Time Off

Chris Irvine, Parent Coach1 Comment

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

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

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

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

Nor has she appeared especially sick.

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

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

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

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

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

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

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

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

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

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

That One Time I Really Screwed Up

Chris Irvine, Parent CoachLeave a comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Five Beautiful Words

Chris Irvine, Parent Coach2 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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