The Denver Autism Wheel

Archive for the ‘Successes!’ Category

ImageBy way of explanation, this is not a current situation in the AutieMom Kate family. But I’ve answered some questions lately about how to get an AutieKid good with the potty, so I thought I’d revisit some of those memories and share how we got here from there.

The typical age when kids train is 2ish. There is a LOT of wiggle room in that. Typi-kid Luke trained himself in one week, just before he turned 2. He and I had a deal: he could wear his Superman costume all day once he wasn’t in diapers (Superman doesn’t wear diapers, you see). That was all he needed: the right motivation. He was so excited about going to the grocery store or the library in his super suit, he was willing to learn to use the toilet.

AutieBoy Chris, on the other hand, didn’t learn until he was 4. Why? Didn’t have the motivation until then. I’m pretty sure he thought the rest of us were chumps, stopping our activity to go into a small room for a couple of minutes and then having to pick up where we left off.

So how did he get the motivation? The same way he learned to walk. We made him 🙂

There are 3 important facts to keep in mind when approaching toilet training:

  1. Kids get to it when they get to it, regardless of adult schedules or expectations.
  2. Once they get it, they get it. It seems like a big mountain, but you only have to climb it once for each kid.
  3. Unless there’s a significant medical reason for it, no kid wears a diaper to prom or high school graduation.

A couple of books were pretty helpful: topics like “potty training in a week.” The key there is the same as it is for a lot of milestones. Consistent expectations and taking the time to make a new activity a habit. A bit of a caveat: I was working from home at that time, so I was able to dedicate the time to this project. This method would be very difficult to complete successfully in a daycare setting without a dedicated adult, so keep in mind that it requires face time for several days (yes, days) to get this done. But again, once it’s done, it’s done forever.

One other qualifier in this explanation: Chris had very few sensory sensitivities or ritual behaviors. While it took him longer than Luke to get used to the new policy about the toilet, we didn’t have to contend with a rigid adherence to his established expectations, and he wasn’t skittish about the sounds or feelings associated with the process. We did have a calm and positive environment for toileting and took our time getting there, and I think that helped. There were no negative consequences for accidents; we just started the timer again and put the wet underpants in the wash.

The books advised putting the potty in a common area (I chose the kitchen: tile floors for easy cleanup if necessary) and spending most of the day around toileting activities. I got a stopwatch and some “big boy” underpants for Chris. I also got him a good supply of apple juice and water, and finger food snacks. 20 minutes off, 5 minutes on. That went on most of the day. Yes, it was boring, but it was necessary. Yes, we had some accidents. When that happened, we started over. It took until the afternoon to hear the little sound in the potty. We celebrated and started the timer again.

Part of the process is associating fresh air on the body parts with relieving oneself. Chris was used to going while the diaper was in contact with his skin. It was a new concept for him, and it took some time to realize that it was OK.

By Day 2, we were up to 35 minutes off, 5 minutes on. He got better at it, and I’d lengthen the time by 5-minute increments. This process went on for about 3 days.

Once he got used to the idea, he was OK with it, and it became a routine. By about Week 2, we’d taken the potty top and put it on the big toilet with a step stool, so he could climb up. From then on, he was golden. He didn’t have accidents, he didn’t look back, and in retrospect, it seemed like a much bigger deal than it actually turned out to be.

You might know (well, you might not, but I do, so I’ll tell you) that the age difference between the boys is a little over 2 years. Luke hit toilet training at almost 2. Chris at 4. Coincidence? Doubt it. There’s nothing like a little sibling rivalry to git ‘er done sometimes, and this AutieMom isn’t averse to using whatever tools are available. Yes, it’s likely that part of Luke’s motivation was to train himself at the same time as his brother. And yes, it’s also likely that Luke’s success niggled Chris enough to get his rear in gear, so to speak.

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.

I had never paused to parse daily classroom tasks until I was faced with the news that my autistic son was underperforming and noncompliant in the classroom. It was an ongoing struggle at his first school, to figure out how to meet the odd gaps in ability he struggled with. He had loads of ideas but had difficulty expressing them. He understood facial expressions but reacted unexpectedly to them. He knew his times table back and forth, but he flailed every timed test in the classroom (“flailing” a test is “failing” but with additional arm-waving caused by distress and helplessness).

It wasn’t until we got to a school with good Special Ed support that we realized the problem was in the complexity of regular classroom tasks. Chris *knows* his times tables and can recite them till the cows came home. But. When he has to write them down, he has a whole laundry list of disparate physical and mental tasks to perform, in addition to remembering the right answers. He has to grip the pencil tightly enough that it doesn’t fall out of his hand but not so tightly that his hand hurts by the end of the test. He has to read and interpret each problem accurately. He has to remember how to form and then draw the numbers that make up the right answer. He has to remember to move on to the next problem after he answers the current problem. All of these granular tasks are constraints on his overall test performance because they are not automatic. He has to keep each task in mind the whole time.

Lumping these separate tasks into what, for typical students, is a single activity produced horrible results on those tests, not to mention a lot of frustration and anxiety on his part. He hated timed tests. There was too much to remember and coordinate. He would either freeze, staring horrified at the clock (picture Dorothy watching the hourglass in the Witch of the West’s castle…) or would simply put his head on his desk and refuse to participate at all. His teachers, who expected that a writing or math exercise couldn’t possibly be *that* difficult, would explain to us at conferences that his noncompliance in class was causing him to fall behind his peers, and no matter the *consequences* of his failure to perform, they still couldn’t get results.

What we saw were the consequences. His lost recess time meant extra fidgets when he did homework. His extra work meant longer intervals of sadness and anxiety. The problem was that the two sides of this situation weren’t playing by the same rules. Neither the teacher nor Chris had a concrete notion of expectations. As a result, both were flying blind, and of course, it was frustrating.

His current school staff gets it right. They administer the same test, let’s continue to use math as the example, in two ways. First, they test for subject knowledge. They do this by reading him the problems and having him answer orally. In this way, he can demonstrate that he knows the material. Period. The second time, they test for reading comprehension and writing ability. They have him read the problems and write down the answers. They can observe a variety of trends in this test: his ability to manage his time and complete the work, understand and follow directions, maintain his pencil grip and write legibly…but all of these observations are separate from determining whether he knows the subject.

The real key to Chris’ success is in his teacher and staff’s ability to analyze a given classroom activity and determine what part of Chris’ knowledge they want to assess. They then translate the results of their analysis into a concrete set of expectations which they give him. He knows what they want from him. They know what they are measuring and what they will receive from him. It has made all sorts of difference in his ability to experience success, demonstrate his knowledge, and also work toward strengthening his deficits. His ability to manage his own time has improved markedly, as has his confidence in expressing himself in writing. That means he writes more, and he writes more easily: working to his deficits through his strengths.

Was it easy? I have no idea; I’m not a teacher or a special ed specialist. It took dialog with us as parents to understand what we saw and knew about Chris. It also took planning and thoughtful deliberation to implement the changes. I can tell you that it was the right solution for Chris, and it has helped him learn to like school and trust his teachers and support staff. It has also helped foster his academic curiosity and willingness to learn and participate. And that’s huge.

In a lot of ways, I’m in the same boat with Julie. Both Karl and I work full time jobs. Karl has the added bonus of working a physics degree at the same time. I have a job that allows for flex if there’s a doctor’s appointment or a school conference. Like Julie, I love what I do.

We realized by the time Chris was two-and-a-half that we weren’t going to be able to do everything, and—in a way—that set the stage for some very healthy thinking. Chris needed help I wasn’t trained to provide. I stayed home with the boys until they were in school all day, so I did a lot, but, “Damn it, Jim! I’m a writer, not a doctor!” 

Chris started with speech and occupational therapies at Children’s in Denver, and I got my first exposure to not having all the answers. We spent loads of time driving to and from service providers, worrying that we were ignoring Luke because we spent so much time with Chris, fussing over milestones, tearing our hair over perceived failures…

Then we came to the school years. At the end of Kindergarten, all the kids assembled in the class, and the teacher asked each one (with a microphone in her hand, recording the event for parents who couldn’t attend) what they wanted to be when they grew up. My heart sang when Alex answered (though not into the mic—he still hates the sound of his own voice), “I want to be a writer…a typer.” A writer! He wants to be like his mom! And the teacher smiled an indulgent smile, held the mic to her own lips and told the assembled parents, “He said he wants to be a typewriter.” “AWWWwww,” they all intoned. She couldn’t have known what she took away just like *that*.

First grade was a similar nightmare of incompetence and blanket assumptions. At our second parent/teacher conference, his classroom teacher and SpEd coordinator told us that he was falling behind his classmates, that he would continue to fall farther and farther behind, and that was OK because that’s what happens with kids with autism. “Your job is just to love him,” they said with straight faces.

Like hell.

It was soon after that horrible glimpse into the philosophy of the school district that we started building our network.

I have to say, first, that I wouldn’t be here, and Chris wouldn’t be where he is, without Karl. He has a clarity of perception that I lack, an objectivity and a persistence that gives my erstwhile Frantic Research Junkie Self a direction. We have approached educating both boys with a unity of purpose, and standing together has helped forge what comes next.

There were two calls I made at that time, and I don’t remember which came first. One was to the ARC of Douglas and Arapahoe County. Carol is Chris’ education advocate, and I’m one of her biggest fans. She has an adult son on the Spectrum and had to navigate these same waters once…seriously, she put up some of the high water markers herself! The other was to the Autism Society of Colorado. Betty, whom I quote frequently and whom I count a friend, is also a colleague of Carol’s and also has an adult son on the Spectrum. Armed with these two formidable women and some Wright’s Law books (which you can find on the Recommended page), Karl and I began approaching Chris’ autism in a different way.

I have mentioned before that I appreciate how many autism groups use a puzzle piece as part of their logo. It really is a lot like finding out how the pieces fit together. Carol helped us understand our rights and our power as parents with an IEP. Betty brings with her the experience of having brought several pieces of autism legislation through to becoming Colorado law and knows the ins and outs of how to get things done.

Alex’s second grade teacher, Paulette, was a godsend. She believed that Alex could achieve and expected it of him. It was Alex’s first experience knowing someone outside his immediate family who saw the student with potential, too, not just the autism. She probably saved my sanity.

We found a tutor for Chris who specializes in ABA but tutors him in his school subjects. That emphasis in ABA has brought a reason to the rhyme of why kids learn vocabulary lists, why it’s important to sit patiently while a teacher talks, and why it’s important to write down your own homework assignments and take responsibility for yourself.

And then, there is Autie Mom Julie and all you lovely people: fellow Autie Moms and Dads, caregivers, professionals and compassionate onlookers. We all share our successes and our challenges, our questions and our ideas. We work through the puzzle together.

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??  

Ian had a god-awful experience with my long-term (25++ years) dentist and his hygenist when he was about 4.5 years old.  It was prior to his diagnosis of high functioning autism…but still it was a bad experience for any kid.  I won’t go into a lot of detail but let’s just say we didn’t even begin to talk about going back to dentist until he was 7.

So we first started reading the dentist stories – what they do and tools they use.  Just to refamiliarize him with the process.  But in my heart, I knew we had to find someone new.  So I called around to a couple of pediatric dentist offices.  Told them our situation and a couple of the front office people said the right things, but when I asked about being back in the treatment room with him, they hesitated. 

Not Dr. Erin Carpenter’s office.  Her front office staff said “of course!  Would he be better off with an end of day or beginning of day appt?  We’ll keep it to just him so he doesn’t feel overwhelmed that hour.”  Wow. 

We went in for a meet and greet and if he wanted, a cleaning.  They let him touch everything.  Use mirrors to see what was going on.  Explained in however much detail he wanted on what they do and their tools.   They did x-rays…he was so excited about the pictures that after several tries (and much patience on their part) when he saw his first x-ray, he was able to stand absolutely still to get the whole head x-ray.  (“Wow Mom!  I look like an alien!!!”)

Fast forward 6 months, we go in for a cleaning and he’s got two cavities – one that hadn’t shown a clue six months ago and has become huge and a very tiny starter cavity.  Dr. Carpenter was mystified on how fast the big one had grown. 

Come back a few days later so we can get them filled.  Ian decides he wants to try the nitrous (part of his awful experience last time).  So they explain in detail how it might make him feel – he decides to go ahead. 

An hour and a half later we have one crown (yikes!) and one cavity filled…and a boy who thinks having a metal tooth (in the back) is cool! 

I cannot begin to say enough good things about this practice!  They get it.  They understand that every kids needs to be approached differently and some kids need more than others. 

Most importantly, I am so proud of Ian, because he overcame something he was deathly afraid of and is now extremely proud of himself. 

I am too.

I’ve told a couple of people that I cry at Chris and Luke’s school almost too often, and I got another reason lately, and I didn’t want to let this joyous season go by without explaining. We moved last year to get into our current school district. You can read about some of the research I did to find our current school back in an intuitively-titled previous post, but the clincher was interviewing with the principal, bringing along my slew of reading material and justification (including my books from Wright’s Law and several of the “what they wish you knew about autism” books—on the Recommended page) and having the principal point out that she had the same books in her own library right next to the table we sat at. After the meeting, I had a good sob in my car for a couple of minutes and then called Karl to let him know we’d found a good fit.

Since then, we’ve experienced kind of a SpEd Nirvana. People in Littleton School District’s elementary ed are absolutely gifted at figuring out Chris, how to engage him, and how to help him (and us) thrive in their environment. He’s doing more of his own work independently than we’ve ever seen. We have also enlisted the help of a tutor who comes twice a week. She’s trained in ABA, working toward her master’s, and she’s helped Chris find his voice to start to ask for help, compose original paragraphs, remember times tables and monitor his own progress in assignments.

What are they doing that’s so marvelous? They’re making him accountable for his output. This includes turning in homework on time, finishing classwork, asking questions when he doesn’t understand, behaving himself like the young man he’s becoming before my eyes. They expect it of him. And he delivers.

So what made me cry lately? A mom. I work with her in the PTO. She is raising a couple of NT kids and asked me about autism the other day. Her daughter has an autie (not Chris) in her class and wants to know how to be his friend but doesn’t know how. This mom wants to raise her kids to be compassionate and understanding, so that autism is just another thing people have sometimes. She asked if she could come to me with “stupid questions” about autism and how to help her kids be friends to their autistic classmates. After another good sob, I insisted 🙂

If I could impress one thing on any person who cares about a person with autism, it would be this: expect excellence in every interaction, every process, every product of that relationship. Demand it. Demand respect, dignity and thoroughness, and impress upon them that they should expect the same fromyou. Help them realize that what they do is visible and leaves a permanent impression. Reward good behavior proportionately, and be willing to admit to it when you make mistakes. Believe in them, and give them reasons to believe in you. They will meet your expectations, so give the best and expect the best.

I have many, many reasons to be grateful as 2011 gets underway. I am grateful to my children’s teachers, administrators and staff for paving the way for them to thrive. I’m grateful to our neighbors and friends for their compassion and willingness to stay engaged and curious around my kids. I’m grateful to the voters of Arapahoe County for approving school funding. I’m grateful to Littleton Public Schools for achieving top rankings in Colorado for academic success and the Littleton School Board for their leadership.

I’m grateful for my family, for my dear Karl, whose generosity of spirit is matched only by his determination to create a fulfilling and interesting environment for our kids. He never gives up and always keeps hope in his heart. And I’m grateful for Chris and Luke. I see their optimism as a signal that we’re doing OK. They look forward to the new day as a mountain to be climbed and then shouted from the top of (pardon the dangling participle in my maternal enthusiasm). And all those people behind them—us; the school; the district; the Autism Society; fellow Autie Moms Julie, Betty, Carol and Audra; the football team; the gym; Club 4 Kids; my coworkers (who I also consider my friends)—helped make their optimism (and mine) possible. I thank you all deeply and profoundly.

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