The Denver Autism Wheel

Archive for the ‘IMHO’ Category

I just read an article that states once again that parenting is a full-contact sport. Not only is it important to sign your kids’ report cards and drive them to soccer practice. It’s also important to look at their beautiful faces once in a while. Here are some of the benefits of eating meals with your kids.
1) You stand a better chance of being able to talk to them about what’s important…to them. The other night, I got to hear all about the advantages of playing Minecraft in “survival mode.” Who knew? It’s not that I’m going to go play the game or anything, but Luke wanted to tell me about what he’s up to, and paying attention to him means he understands he’s important to me.
2) You stand a better chance of putting something nutritious in their mouths. The article I mentioned at the beginning of this rant is in US News and World Report today. It explained that kids mimic their parents’ eating habits. OK, that makes sense, and it benefits two generations: parents, who eat better foods to set a good example for their kids, and kids, who base their eating habits on what they see their parents eating.
3) You get good food into everybody. I’ve written about this before, but the grownups eat the same thing the kids eat at our house. In one context, it sets the bar for me to make sure everybody gets their fruits and veggies and lean protein. In another, it keeps me away from processed, pre-packaged meals because, while they’re easy, Karl makes faces at them. Because they tend to be high in fat and preservatives, they aren’t healthy for his middle-aged adult body. If he doesn’t want it, I don’t feed it to any of us.
4) You get to look into their beautiful faces during the whole meal. I don’t know what your house looks like, but mine has people working, doing homework, playing musical instruments and sports, going to meetings, going to sleepovers…there’s not a lot of face time. Except at dinner (and most breakfasts). These moments are phone-free and distraction-free. We talk about our day, we talk about our meal, whatever. But we’re all there, face to face. I know the kids don’t see it this way, but as a mom, I cherish these times because Chris is 12, and I only get him for another…gulp!…6 years. So, another benefit is…
5) You know where they are during that meal. Not just physically, because, yes, we’re all sitting around the same table. But mentally, too. We get to hear about science projects, homework assignments, the gossip in the fourth grade classroom or the sixth grade hallway. That’s priceless intel when you want to get a picture of your child’s world when you’re not around. And: it sows the seeds that you’re approachable, in case they need to talk about something worrisome or bad. You’ve already established that their world is interesting.
6) You establish the expected behaviors for the kids when they are at the table. Social cues are not organic, particularly for Chris, but also for Luke. And manners count at the table. This is an important place for both the autistic and the typical kid to learn social skills together. And sure, they graze when they get home from school (a mouthful of cereal here, a handful of grapes there), but mealtimes are for sitting down, sitting still for the whole meal, eating with utensils, speaking clearly and quietly, and keeping your elbows near your body. That way, we are in better shape if we visit relatives for dinner or go to a restaurant. They already know how we expect them to behave when the food arrives.

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We are nearing the end of another eventful year. At my household, Chris entered middle school, a trial by fire for any kid, amplified by a foundational lack of understanding about what his typical peers are up to at any given moment.

But looking back on the year, I have some specific wishes for the people who make a difference in the lives of families affected by autism.

First, for the teachers: I wish you that moment of clarity a student has when he really *gets* what you’re teaching. I wish you that flood of new realization and confidence in his eyes, that gratitude he feels that you showed him exactly which tools he needed to solve the problem. I wish you the knowledge that you have become the teacher he will remember fondly when he tells his own children about the importance of a good education.

Next, for the paraprofessionals: you see our children at their worst and have to try to make it better. You carry the bruises from the tantrums, you have to write the notes home to frustrated parents, you help bridge the gaps between teacher instruction and student understanding. And you keep coming back when others would have thrown their hands in the air and walked away. For you, I wish gratitude. I wish for parents who cherish your insights when they are not at school with their children. I wish you the respect of the teachers who don’t have the time or experience to reach your student.

For the nonprofit staff members and volunteers: I wish you the knowledge that what you do is valued and appreciated far beyond your average client’s ability to pay it forward. The light you shine on research, advocacy, support and awareness gets us where we are today. And families five years from now will be even farther down the path you are paving now. We are building better lives for the people we serve, even if those people aren’t capable of expressing their gratitude for your help.

For brothers and sisters: I wish your stuff to be right where you left it and in the same condition as the last time you saw it.

For parents: I wish you two moments:

  1. The moment your child opens *that* gift. You know which one it is. It’s the one you know in your heart of hearts is the thing they cherish, and I wish you the look on his face as he realizes you understood what he wanted. Even if he couldn’t tell you about the big ol’ bucket of Legos or the bicycle, it’s OK. You got it, and you got it right. In our case, it was a wobbly 100-year-old mantle clock he will doubtless have to take apart, clean, repair and put back together at some point. But for now, it chimes the hour and the half hour, and the pendulum swings back and forth in its lopsided tick-hiccup-tock. And he adores it. And Karl just “had that feeling” when he took Chris to the antiques shop to have a look. I wish you the look on Chris’ face when he brought it in from the car and put it above the fireplace in the living room.
  2. The moment when the house is quiet because everybody is either asleep or hard at work. It’s the moment when nobody is clamoring for you because they know what they’re supposed to be doing, and they’re getting it done on their own. Nobody yelling, nobody throwing anything, nobody crying…just quiet and peaceful.

These are my holiday wishes. They are finite moments in time, priceless because they are rare and fleeting. But for those with eyes to see, they get us through those … other moments. Most of our lives are relentless in their demands, velocity and expectations. This holiday season, I wish you a calm in the storm, a moment to relax and rejuvenate. It’s all going to start up again before we’re ready for it, so while we can take a moment, I want to thank you all for your persistence, your courage and your strength. We are there for the people who need us, some of us because we made them and we love them, and others because they are trained in that capacity and possess the empathy and tenacity to keep coming back week after week.

It’s hard enough just being a preteen (tween…whatever…see??), but then you have to go and add in autism and a bunch of your peers suddenly acquiring a social/emotional awareness around you, and you have a perfect stormof hormones, velocity and increased demands on your attention, perception, ability to think abstractly, and figure out what the heck is going on that makes an autiemom’s teeth rattle.

Eustacia Cutler (Dr. Temple Grandin’s mom) once opined that adolescence and autism are the stuff of the devil (see me quote that in my last post, too: think it’s been on my mind??) but no matter what you call it, Chris is in it, and now it becomes my job to do my best to see him through Transition #2.

Transition #1 (preschooler to elementary school) wasn’t fun. Chris didn’t speak much until he was about 4. His Kindergarten class had its “bridge” ceremony at the end of the year (which is a whole other kind of brain damage), and the teacher asked each member of the class what they might want to be when they grow up. Chris told her “a typer or a writer.”

I was there. I heard him clearly. I worked from home when he and Little Brother Luke were preschoolers. I am a writer. It warmed my heart that he wanted to follow in my footsteps. But he didn’t like hearing his voice amplified over the microphone, so he didn’t speak up. His teacher “translated” for him: “He says he wants to be a typewriter!” The parents all chuckled. A typewriter. Ha ha.

Aside from the absurdity that any child born after 2000 would even know what a typewriter is without checking Wikipedia on his mom’s smartphone first (feel free to roll your eyes, too), that was just one example of why Chris didn’t talk much. It took a long time for him to formulate his thoughts in the first place; then to have those thoughts mangled by an adult who wasn’t listening particularly carefully…well, it just wasn’t worth it.

Enter Transition #2 (elementary to middle school). Where we live, elementary school is K-5. Middle school is 6-8, and high school is 9-12. Chris talks a lot more now than he did as a Kindergartner. He has some “friends,” who know he likes Big Ben, history and science, and scary Halloween stories. He doesn’t know much about them, though. When most of his classmates gossip or play basketball at recess, he still likes to swing on the swings. He’s definitely at a turning point with his peers when “play” turns into conversation and there is a much higher emphasis on small talk than expertise.

He turned 11 back in December. He’s currently 5’ 4” and weighs about 105 pounds. His voice changed over the summer (so he now sounds like my adult brother, which freaks me out). He’s a good foot-and-a-half taller than the shortest kid in his class, and he’s as tall as his teacher. Puberty: meet autism.

My goal for sixth grade for him is to peel back the para support at school and let him get as much work done on his own as possible. Also: that he not get locked in his own locker. We started the transition process when school started up after the new year, and so far, things look good. His middle school staff understands that “it’s not cool to hang around with grown-ups,” so they fade para support as much as possible. Hopefully, that’s a step toward my first goal.

My second goal is a bit more complicated. I have a lot less control over whether it works out kindly for him. A big part of this transition is for me, too. Chris isn’t my little boy anymore. I can’t fix all of his problems anymore. I can’t get between him and the bullies.

And, of course, that wouldn’t be good for him, either. I shouldn’t solve all his problems for him any more than I should do his homework for him. Yes, it’s going to be a bumpy ride. Yes, we’re going to have some uncomfortable conversations in the next couple of years. Yes, he’ll probably be called into the principal’s office to explain himself.

But it’s not a race to adulthood. It’s a process. Transition #2: he’s going to learn to stand on his own two feet. It won’t be pretty at first. But it isn’t pretty for anyone, and keeping the bad guys away for him just teaches him to rely on me instead of himself. The (probably ugly) lessons he learns now will help him become more self-reliant and confident as an adult. My challenge is to back off a little and let him learn.

I love the line in Ratatouille when the critic orders: “I’d like some nice, fresh perspective.” I’m looking back now on five years of knowing what to call the stims, the awkwardness, the gaps in understanding. Eleven years total in this process, but five years of talking to people (sometimes arguing with them; sometimes that just happened in my head), trying things out, working with Chris, banging my head some days. And then he became an adolescent…

Eustacia Cutler explained this stage brilliantly: autism + adolescence = hell. I can only imagine. Take everything you know about how your child communicates (or doesn’t) and then add in the confusion of physical changes in their bodies, added hormones and new smells, voice changes…yeesh: check, please.

But you can’t just pay and leave. This is only the beginning of the time when you can make the most difference for your kid. And, if you’re like me, you’re learning as you go. Damn it, Jim, I’m a mom, not a psychologist, sociologist, anthropologist, agony aunt, Sherlock Holmes, decoder-of-strange-explanations-for-irratic-behavior. And for goodness sake, he’s still my kid, who looks to me to make sense of the world. I remember being a tween: the world don’t make no sense, but it’s all TREMENDOUSLY DRAMATIC.

Back when we first got this whole living with the diagnosis of autism thing rolling, back before Karl and I knew how much power a parent’s voice carries, we sat in silent desperation in a parent/teacher conference and listened to the SpEd coordinator and Chris’ first grade teacher as they explained that it was normal for Chris to fall farther and farther behind his classmates. That’s what autistic kids do: they fall behind. That’s OK. “Your job is just to love him.” Those seven words have stuck in my throat for 5 years. Because “loving” your autistic child means so much more than hugs and driving him to and from school every weekday. Love means reading everything you can find, talking to specialists, pounding on the principal’s desk when he won’t listen, soliciting expert information, gathering human and print resources to provide the “free and appropriate public education” you never thought would be so difficult to secure when you saw that little bundle in the bassinet.

It also means you never give up. You do what you have to do because you’re the one who has to do it.

But there’s good news here. Chris is going into 6th grade next year. We’ve already started the transition process, and he’s met his new staff a couple of times. His para isn’t following him to middle school because she realizes “he has to make the transition and be successful in a new environment.” We have an education advocate. We have a support structure. We have teachers who listen and try and work and try some more. We have all this infrastructure around the guy. And now those words come back to me: “Your job is just to love him.” Yah, lady, and I do. Because now that we have the educational infrastructure in place, I can be there for him to talk about all those weird teenager things, try to help him make sense of the jungle of social/emotional changes his peers will find so much easier to navigate.

So here’s the nice, fresh perspective: get that stuff in place. Early intervention rocks. It helps lay the foundation for the next stage of development. Ask the questions, advocate, share, stress. And put down the next layer of support. Rinse, repeat. And trust that all that good prep work pays off. All the scaffolding will come away from the building as your kid gets a handle on the expectations, goals and habits he will need. The important thing is being there. And “just loving him” is never “just” loving him. Yet it is. Yes, it’s a lot of work, and there’s no immediate payoff or reward for a job well done. But each layer you put down is another layer of understanding, coping, learning and growth that he will take with him to his next stage of development.

It’s a bit late, but this is important, so I’m attaching a link to this post on The Stir about how Awesome we Autiemoms are (and Autiedads…you guys get loads of props, too). Check it out http://thestir.cafemom.com/toddler/120195/9_ways_special_needs_moms

Nyhavn in Copenhagen

Karl and I took the Chris and Luke to Denmark in Summer 2009. We chose Denmark for several reasons. It was the first time the boys were going overseas, and we wanted them to see something different from what they knew in the Denver Metro Area. We wanted them to eat new foods, see new places, interact with new people. We wanted them to hear people speaking a language other than English. BUT! We wanted them to be able to get help in English if anything happened.

Imagine it: my 6YO NT and my 8YO HFA in a foreign country for the first time. What could possibly go wrong? Well, off the top of my head, they could get lost or hurt. They could behave inappropriately and start a fight with another child without knowing they violated a cultural norm. They could miss a train or a ferry boat and end up on the wrong side of a large city without somebody to look after them…the list of things to fear is fairly long. BUT! The alternative is to stay home. Never venture beyond our own porch, never taste new foods or see new places, never TRY. And that’s not an alternative I’m willing to entertain.

But why put yourselves through that, I hear you say. Didn’t Chris pitch a total fit on the plane with the change in air pressure and the length of the flight, or lose his mind the first time a train whistle blew too loudly for him, or lie awake all night because he wasn’t in his own bed? Autistic individuals crave the predictability of routine and ritual, you remind me, so why did you open him and yourself up to the potential for a 2-week stay in Tantrum City, Denmark?

It’s just exactly because of that, actually. Human beings, typical and autistic, love those old routines, the habits and patterns of day-to-day life. The unpredictable can be intimidating for all of us, but we learn to adapt. We all learn to adapt. Some learn to dive in with a sparkle in their eyes, and some learn to scream and flail until somebody takes them home. We have raised Chris to be OK with change because change is life. If he is to become a productive and confident adult someday, he has to know how to handle change with grace. Period. And as his parents, we have to teach him how to do that.

So. They got their passports. We made a fuss about that. Not many children in the United States even have passports, much less use them. We were going to use them: how exciting!

We read books and visited websites about Denmark to help establish context: there were castles and boats and Vikings (show me a boy who doesn’t like a good Viking story!) and trains and…bicycles! Fun fact: Copenhagen, Denmark, is the world’s most bicycle-friendly city. They have separate bike lanes everywhere they have streets. They even have separate traffic lights for cyclists in town.

We got Chris an inexpensive digital camera. He was really into taking pictures at that time, and we thought it would be a nice way to show him 1) that we trusted him to take care of a piece of electronic equipment that adults use, and 2) that we value his perspective of things. He took lots of pictures of staircase railings and restaurant table legs and sidewalk cracks and the fronts of trains. It was all good: he captured what he wanted to (and didn’t lose the camera, BTW).

We also brought along an iPod Touch with his favorite movies and music already loaded. Lordy love Apple for creating such an awesome, useful, pocket-sized device because it gave both boys something familiar to do on long train trips after they’d watched their hundredth quaint village slide by. It also helped us adults orient ourselves with the mapping and translator apps.

We stayed up late, we rode bikes across the city, we ate hotdogs and ice cream, we visited castles that were older than our country and spent an entire day in the original Legoland. And now, Chris and Luke have those memories forever.

Next stop: probably Grandma and Grandpa’s house in Washington State. Not every adventure has to be grand, but we do have to keep pushing the comfort zone and letting Chris get a feel for new experiences. And he gets to learn to handle new situations with us as his lifeguards, there to help if the water gets a little too deep. Sooner or later, he will be an adult. Autism doesn’t wear a sign, so he will look to all the world like a strong, tall, capable man. We want him to know how to act like one, too, and the only way to do that is to practice.

No I am not asking about your social network – your Facebook friends, which are definitely important (as soon as I can convince Kate that Facebook is sometimes worthwhile!)

But who is your network of support?  Not only for your child but for you and your family members? 

Just to set the stage of our day-to-day lives:  My husband Scott and I both work full time jobs.  We would love for one of us to be able to stay at home, but that isn’t our reality.  Ian is in 3rd grade this year.  Alexa is in Pre-Kindergarten at a local day care that is awesome.  Scott’s job has no flexibility in it at all – hours that are set in concrete of when he needs to be in the office.  My job, however, is extremely flexible.  I’ve worked long to get there and now that I have it I wouldn’t give it up for even more $$$.

We learned after a very painful Kindergarten and 1st grade year – that we needed HELP:

  • Help with the school and dealing with IEP and special education needs.
  • Help with after school.
  • Help with pre-teaching Ian concepts.
  • Help with social skills.
  • Help with physical activities and many other things. 

We assessed our major issues.  1.  We needed help in advocating with the school.  2.  We needed help with homework after school and pre-teaching him concepts.  3.  We needed help with social skills. 

We’re extremely lucky that we have most of our family nearby.  My parents, Scott’s parents are both here in town.  My brother and his family.  Scott’s sister and her family were here but just moved to TX…we’re still traumatized by that departure and the fact it was to TX but that’s another post. 🙂

My Mother-in-Law is a force of nature.  If I ever get really sick, she would be the person I would turn to regarding health care services.  Figuring out what’s needed, what’s really necessary etc.  She asks questions that most people don’t think to ask – and sometimes we’re all surprised by the answer.  Because of Scott’s work hours, it seemed natural to ask my MIL to help with advocating with the school for special ed services. 

You need professional help too, however.  We knew it would take years to become experts in Special Education Law.  So we found our ARC (Association for Retarded Citizens – links are on the right-hand side under Advocacy) chapter and found Nancy.  Nancy is a professional education advocate through ARC.  It took lots of meetings with Nancy, then with the three of us (Nancy, MIL and myself) with the school but we got what we felt Ian needed in place.

We also decided that Ian was missing out after school – a prime time for him but not for us.  Since we both work, we had him in the after school program at the school.  Ian was one of 50+ kids they had 8 adults trying to take care of and keep safe – which is ultimately their goal.  They do homework at after school, but Ian needed some extra help and extra prodding so it never worked out well for him.  And by the time we were picking him up and trying to do homework it was a nightly game of frustration for all of us. 

So after much internal debate and much financial juggling, we hired a college student to come pick up Duncan after school.  In 2nd grade, it was three days a week.  In 3rd grade, it is every day.  Our college student picks him up when school gets out, brings him home and they do snack, homework and if he’s fast he can get some play time in too before dinner. 

 We found a professional tutor who specialized in working with kids on the spectrum…we focused on three things – ensuring Ian was up to grade level in his areas of strength (math and reading) and work on a plan to get him up to grade level in his areas of weakness (writing). 

Now in 3rd grade, Ian is at grade level across the board.   

It’s not all about school.  Ian needs to work on his social skills too and we’ve got him in Cub Scouts and in a social skills group during the summers.  (Talk more about that in “Socially Speaking” soon.)

We also have other professionals, doctors, therapists (speech, occupational) in our network but we don’t see them as often.  Which I’m happy to say. 

A key person in my network is Kate and other Autie Moms and Dads.  We talk, IM, email, post and chat about the day to day things.  Ask each other questions through posts on boards ‘does your child do this, have you tried that?  Is this “normal” in our world?  My world would be very different if we didn’t have each other in it.    

So what are your goals for your child?  For yourself?  How can your network help??  


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