Speech delay

Back on the Horse

Chris Irvine, Parent CoachLeave a comment

It’s been several months since I’ve written. I’m not completely certain why I’ve had such a dry spell. Certainly life has continued to provide challenges, failures, successes, more questions–with or without answers–and even some adventure.

I have my suspicions, though.

This blog has been primarily about raising Maddie. And in the last several months, although she has provided many an interesting moment, there have been some other serious issues on my mind, and I didn’t want to necessarily write about them.

One is my health. I’m one of those people who always has an issue. Or two. Or three. It’s my back. And migraines. And terrible allergies. And unexplained and ongoing gut issues. And my ankles are messed up. And I have an allergy-related sleep apnea that makes me so tired all the time. I might sleep for ten hours and still feel exhausted all day. It sucks. I’m slowly trying to address all of those things, but I’ve found it hard to say, stick to a Pilates schedule when my stomach hurts so bad all the time. I’m finally figuring that one out, so maybe it’s time for those Pilates classes again. And yes, I have to do something like Pilates where I’m less likely to aggravate my ankle or back or hip or whatever. I have one of those bodies.

Second is my marriage. It’s a struggle sometimes. Statistics show a greater risk of divorce among couples with special needs children. Boy, ain’t that the truth. As if being parents isn’t hard enough, you throw in some extra challenges that nobody’s really equipped to deal with, and you’re rolling the dice.

Third is the other kid. Our son. He’s almost 14. He’s such a cool human being. I’ve been challenged with two completely opposite children, so parenting each one is an adventure, to put it nicely. H is intelligent, thoughtful, philosophical, and deep. Sounds awesome, right? Well, those qualities are admirable and desirable and all that good stuff, but parenting a kid like that is hard. He can argue you into a corner, for one thing. And he never ever gives up. While I admire his persistence, sometimes it’s just exhausting. More on him later, though.

Also my parents. I love my mom and dad. They live about 45 minutes from us. I wish they were closer. So I could help them. On the other hand, they’re not super great at accepting help (like mother, like daughter, I’m afraid). My dad has suffered from debilitating depression and anxiety for many years. My therapist thinks he’s agoraphobic, among other things. The word “bipolar” has reared its ugly head of late. I suspect he has some PTSD from a few episodes from his younger life. Whatever the diagnosis, and whatever the cause, he is severely disabled. He rarely leaves the house. It’s too stressful. Just riding in the car is often more than he can bear. He hasn’t driven for years even though he is only just turning 70. So I worry about my dad. But even more so, I worry for my mom. She is a doer. A worker. A creator. She likes to make things, so for several years she has been sewing items to sell at a local consignment store. Or two. Or three. She also refinishes furniture and makes things like framed chalkboards for kids’ rooms. She cooks up a storm, too. She recently completely re-landscaped their front yard so it’s more drought-friendly. She likes to be industrious. She has also spent her life without a lot of extra money, so when something needs doing, she does it, for the most part, rather than paying somebody else to do it. Every once in awhile, there is something beyond her scope (particularly since becoming permanently partially disabled some years ago because of chronic wrist pain in both arms) and she’ll have to hire somebody. But her go-to is “just do it.” How do a person who can’t do anything and a person who only wants to do things live together? Guess what? The doer, my mom, adjusts her life to suit the other. There is a lot of going nowhere. Particularly because Mom worries about what might happen when she’s gone. Dad’s just not reliably level-headed anymore. I want to help them so desperately, but it seems to be out of my hands. I want my dad to be well and, even if he can’t be well, I want my mom to have a life.

So I’ve been distracted, I guess. And I haven’t felt compelled, or maybe just comfortable, putting all this in writing. I don’t want to “expose” anyone. I also don’t want to make this blog a tribute to all my problems, and most of all I think some of this stuff is kind of private. At least the other parties involved might think so.

And then there’s Maddie. She’s still exactly Maddie. She’s at camp right now, the camp she absolutely lives for the rest of the year. When we were anticipating a New York-London trip we took last month, I asked her if she was excited. “Meh,” she said. “CAMP!” That pretty much sums up her experience of our trip (another blog or two will cover that). She just wanted to get it over with and go to camp. So right now I can rest easy knowing she’s in her happy place. She’s probably filthy and she probably has terrible B.O., but it’s out of my hands, and isn’t that a beautiful thing!

And before that, of course, the infamous school year (the actual “Year of Living Hopefully”) came to a close. More on that in another entry, too.

So today I’m back. I remember now that I can write and I like to write and I have something to say. A lot of somethings to say.

The story continues.

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.

That Weird Time She Said Something, and Then Nothing

Chris Irvine, Parent CoachLeave a comment

One thing you quickly learn about parenting an Asperger’s kid is you really just never know what they’re going to do. Yesterday I eagerly asked Maddie about her second day at school. The first day was a celebratory kickoff to the school year, without any real classes to attend. Instead there were a couple of inspiring speakers and a barbecue party. So the true experience was delayed (although it certainly says something about a school that it begins the year like that).

I asked Maddie which classes she’d had and which teachers she met. Trying to remember what her schedule was that day, I asked, “Did you meet your math teacher? It’s a woman, right?” Maddie is great at math and has geometry this year. I loved geometry, and I think she will too, so I’m particularly excited about this class for her.

“Well?” she began. “I got confused, and instead of going into room 225 I went into 223.”

Easy fix, right? Notice you’re in the wrong class and excuse yourself and go to the right one.

“I had a funny feeling the whole time because the teacher had a different name.”

“Did you go to the right class?”

“No.”

“Did you talk to the teacher?”

“No.”

“Did she take roll?”

“No.”

I surmised from her short description of events that she wondered for an hour why the teacher in the front of the classroom wasn’t the teacher on her schedule, and upon leaving the room at the end of the period, discovered her mistake. Her solution was to shrug it off for the day and go to the right class next time.

Head slap!

Naturally, I got a call and email from the attendance person. I hope I’ve addressed the issue properly and she doesn’t get an unintended, unexcused absence on her second day.

Maddie is crazy-book-smart, but sometimes her common sense is up in the clouds. And she does something head-slap-worthy.

On the other hand, sometimes she does something equally surprising on the other end of the spectrum. Something extraordinary.

When Maddie was 18 months old and still nowhere near talking, we decided to teach her some sign language to bridge the gap and relieve some of her (and our) frustration. Surely all that screaming was an attempt to communicate the myriad thoughts in her head. She could finally use her hands to do some of the work.

So we bought a book to help us along. We’d look up signs so we could all learn together. After some time, we all knew more than 100 signs. My favorite one was “please,” which involves placing your hand in front of your chest and moving it in a circle. Maddie, in such a Maddie way, gave that sign kind of a shorthand. She would just quickly and casually brush her hand across her chest, as if knowing she had to say please but not willing to put much effort into it. That always cracked me up.

Another sign that was especially important in our lives was the sign for “lights.” Goodness gracious, was Maddie obsessed with lights. I think babies in general find them pretty interesting, but in true Asperger’s form, Maddie’s passion for lights was unsurpassed. Fans were also pretty exciting. We made up our own sign for “light,” kind of a flashing movement with our hands. Open, close, open close, facing forward, hands out. There was a lot of “talk” about lights. If we entered a restaurant and a single light was out in the far corner of the place, I would be immediately informed. Maddie was On It. Lights, lights, lights. Let’s all talk about lights.

So important were lights in our lives that the made-up sign was the first sign we taught Maddie, before we even got the book to help us along. She was still screaming a lot, but at least lights were something she could discuss in a quieter, more socially acceptable manner.

About a month into the sign language experiment, I took Maddie to my parents’ house for a visit. My older sister Becky and her family were living there at the time, so we had a great afternoon with the cousins as well. They all adored Maddie from the beginning and were pretty excited to begin the sign-language journey along with us. Being quite familiar with Maddie’s love of all things lights, Becky was excited to talk to Maddie about them. “How do you say ‘light’?” she asked, looking for the sign we had taught her.

“Light,” said Maddie.

Until that moment, she had only ever screamed. But there we were, Becky and her kids and me, all staring at this up-until-that-moment nonverbal kid. And clear as day, she had said “light.” If I hadn’t been there myself, I never would have believed it. But she had said it.

And then for the next six months, she didn’t say another word or utter another recognizable sound until the day, at 25 months and 2 days of age, when she finally said “mama.” For those six months, there was more screaming, and thankfully, a lot more signing.

Such is life with an Asperger’s child. You brace yourself for the missteps (like the time she entered a neighbor’s house through the dog door, and we don’t even know these people), and rejoice in the beautiful moments you never saw coming.

In this year of hoping, I will try to focus on the rejoicing.