Jennifer Byde Myers is a writer, editor, and parent of an autistic child. She has been writing since 2003 at www.jennyalice.com, chronicling her family’s journey from diagnosis to daily living with her son’s special needs. She is a founder and editor of The Thinking Person’s Guide to Autism. Her writing has been featured at Salon.com, Autism Speaks, Care.com, and in several books including My Baby Rides the Short Bus. Jennifer has been interviewed on NPR, on Forum with Michael Krasny, by Autism Womens Network, the Coffee Klatch, and on the Next Frontier. She is Parenting.com Must-Read Mom a regular contributor at Dandelion. She lives on the San Francisco peninsula with her supportive husband, two wily children, and a dog named Gus. Follow her on Twitter at @jennyalice.
A plane flight with kids is generally on the list of challenging parenting situations. Of course we have flown all together before, several times, but it just seems like the kids were so much smaller last time, more manageable and moveable. Jack has turned into a tween, and those long arms and legs have more strength than they did just a few years ago. I cannot carry him down the aisle of a plane, or manage a heavy bag while holding his hand; if we want him to go somewhere, or sit someplace, he has to want to do it too, or it won’t happen.
That’s why I told Jack about our surprise trip to Southern California to visit family, and that famous mouse. While we left it a secret to his sister, I wanted to make sure that he saw the benefit of getting up while it was still dark. I was hoping that by going through all of the things that would happen he would be more prepared, and more likely to happily participate.
I think it worked because TSA pat downs, and the over-crowded amusement park didn’t seem to faze him. He ate his way through a white table cloth dinner at a fancy steakhouse, and seemed to enjoy zipping about the entire state of California, a different part of our family in each place. Our holidays really could not have gone any smoother.
Jack has grown up a lot over the year. He’s matured. He’s more tolerant, and calmer when he’s in distress. He’s doing a better job of letting us know what he needs, and we are doing a better job at listening. And I’m less anxious, in general, like maybe I do have some of this parenting stuff down now. Specifically, when it comes to travel and airport security, I know we’ve done our best to be organized, follow all of the rules, and leave plenty of time. We try not to “hold up the line” but not if it makes our kids feel rushed. I know that some things will go smoothly, and some things won’t, but chances are we will all make it through relatively unscathed.
And we did. Better than unscathed, we came out happy, with some great memories. Of course there’s still one more drive ahead of us… let’s hope it is as easy as our other travels have been.
Cheers to a great 2012, and the prospect of an exciting 2013.
Well, that's it, this is the last year that Jack is going to fit into one of those one-piece costumes. They have made life so much easier for us, and because they are recognizable characters, it's made it easy for others to figure out what Jack is dressed up as on Halloween because he certainly won’t wear a mask or makeup. His little sister has thankfully switched costumes from Zombie Homecoming Queen (which I did not approve), to a very precious Sock Monkey get-up. I will be dressed as a mom who spent too much money on costumes, and is regretful that she didn't sew anything for her children.
Jack has always had great costumes. He began the tradition as a 1 month old in a Chili Pepper snap up cozy. Then he was a Fireman, a Doctor, Incredible Hulk, and Mr. Incredible. He's also been Spider Man, Bat Man, a Pirate, last year, a Cowboy and this year a character from Star Wars. Something Storm Trooper-ish. I love the fake muscles that are stuffed around his strong thin arms. It was sillier when he was a five-year-old in the Incredible Hulk suit. Now there's less contrast. He’s still wiry from being young, but soon enough his own muscles will be that big.
The dress-up box has become crowded with all of those costumes, and now our second child is getting too big for those smaller play-things. It’s hard to believe that he ever wore that little zip-up fireman outfit. He wore a hat that year, but I realize now that he probably never wanted to wear it, but his little arms couldn’t go above his head to take it off. After years of no hats, he wore another one last year as a cowboy- I was so proud. No masks, no hats, no makeup, simple this year for him and for us.
Halloween is not my favorite celebration. It all seems like so much effort for such a small reward and the evening fraught danger. But our friends have made the entire thing a lot more palatable for me. We will go out tonight with a group of people who love us just as we are, warts and all. Understanding, helpful people who want to include our family. Jack is already being silly as the excitement of the evening draws near. We won’t last long I suppose, but just getting there is most of our battle, any candy we get after that is, well, icing on the cake.
I get a note each night from my son’s teacher. She tells me what he did that day, any struggles he had, and provides information about what’s happening in the classroom and around the school. It's a great way for me to catch up on what he's doing in school, and a great way for each side of the equation to have context for conversation with Jack. When we go out to dinner at his favorite restaurant, I write Jack’s teacher, then she and the aides can ask him questions about what he did the night before. It's also great that the email goes to both my husband and me. So many times in the past I would read Jack’s little journal, or have talked to the teacher when I picked Jack up from school, and that information would never make it all the way back to my husband. It is fantastic for my two favorite guys to have something to ‘talk’ about.
There is the usual update about OT and PT, and how well he walked on their social outing. I love hearing about his art projects, because art isn’t something he likes to do at home. And while I know that they have a yoga class every week, I know that they adapt a lot of the moves for him because he doesn’t really like to sit still, and doesn’t like his body being manipulated in any way. But I’ve seen him stretch out across the lawn, so I know that some of those moves are probably familiar to his body. I have seen him participate in an art class, and watched his hypermobile limbs bend and bend.
But the thing I can’t get over, is that lately I’ve been reading that he “did chores at the end if the day.” Chores? Yes, chores. At school he clears his plate after snack. He wipes down the table. He pushes in his chair. Of course he's doing all of this with help, physical prompts, vocal prompts, and more commonly hand-over-hand. But he is still doing chores. He never does any of that at our house.
This chores thing has come up a few times at our house recently, with my daughter noticing that she is held to a different standard when it comes to cleaning up her messes, and participating in the daily maintenance routines of our house. She hasn’t exactly complained, but she knows that Jack doesn’t have any chores at home. On my best day of parenting, I would create one standard, then adapt that to help Jack meet that standard too.
So now I’m thinking, well why doesn’t he do chores? Shouldn’t he be doing the same things at school and home, so we can reinforce learning? It’s not the first time that he has been capable of a skill in one location but not another. For consistency, I believe he should have standards that are similar to those that are set for him at school, and as he learns in one environment we should see the behavior both at school and at home. This transfer of skills can take time, and I’m aware that Jack is on his own schedule of development. But couldn't there be another thing at play here? I have tried a few times to help him carry his plate to the sink after dinner at home, but with no success.
Maybe this isn’t entirely about skills. Perhaps he just doesn’t want to do chores at all, because what 12 year old really wants to clean up anything? ever?
This is the busiest time of year when it comes to parenting my son Jack. Once we’ve gone through the usual back to school, adjusting to schedules after the glories of summer we enter the month of October, when every agency checks in with our family. As we have gone through these 12 years we have managed to collect several social workers, a state doctor, occupational therapists, physical therapists, a behavioral psychologist, a program director, teachers, aides, and of course his pediatrician and dentist.
Just scheduling the appointments can be hard enough, but sitting through them has not always been easy. Part of the conversation always includes Jack’s deficits. Always. Obviously that’s why we are meeting, because we need resources for my son that people with more typical children don’t need. Obviously. And you would think that after all these years it would be easier for me to either have a canned story, or just steel myself for the conversation, but I hate it every time.
In spite of the fact that we have very kind, diligent state employees attached to our records, my stomach tightens with the approach of each appointment. I do my best to create some balance, sharing the positive growth that Jack has had over the year, but it almost always must settle on the needs he still has.
I don’t take it personally now. I know that the criteria is there for a reason, and that it has nothing to do with my particular child, but I am also much more conscientious about what is said in front of my son, and what I tell him if we do speak in front of him. If he must be in the room then I explain what we are going to talk about, that it might be sort of personal, and that we are talking about it so he can get the right accommodations. He knows he has struggles, that he needs help, so I’m sure he’s pleased when he hears that his aide will still be funded, and that he will get a more structured seat for dining at home, but he doesn’t need to hear anyone going through a checklist of all of those needs.
If he laughs at our jokes, chances are he’s understanding all of the other stuff that is said around him too.
Birthday. Birthday. Birthday. It used to be hard to plan Jack’s birthday. When he was one, two, three, no problem, we just threw house parties to thank all the people in our lives who had supported Jack and our family through sleepless nights and therapies. Then there was a good six years there when everyone else was having jump house parties and happy gym crawl around things, and acrobatics hoopla that just didn’t work for us. And they really didn’t work for Jack. I was just at a loss as to how to celebrate Jack’s day of birth in a way that actually honored him instead of just meeting some kind of social norm.
We figured out how to do school … I take unfrosted cupcakes and jars of frosting with dull knives and let the teacher do a fine motor skill project that just happens to be Jack’s birthday. It is fun and easy and fun, Messy and fun.
But what to do about the traditional celebrations? The expected celebration where we invite family and friends and classmates? And then, I realized that if we really wanted it to be about Jack, then we should do what Jack likes to do. We’ve been scooting away from doing what is typical or expected, and focusing as a family on what really works for us for awhile. We are much less concerned about what others think and much more focused on what our family needs.
What works for us, what works for Jack, is enjoying a meal with good friends. So that’s what we did tonight. Actually we did the exact same thing we did last year, and we did it in the same place, at a local hoffbrau. We reserved a small party room, asked friends and family to join us, and brought cakes and cupcakes and candles. Everyone got to eat what they wanted off the extensive menu and have some space for their kids. When our kids got a little noisy we were able to close the door without the worry of bothering other diners, and we got to enjoy being who we are.
Jack held court in one of the center booths with friends and family switching out while he ate dinner. Then he had some ice cream, then some chocolate cake, then some more ice cream, then a little cheesecake, and when that was done he laid his head on the table and watched the little kids run around, and listened to the grownups chat.
No jumpy house. No balloons. No giant mouse and clanging game machines. No laser tag. Just Jack, and family, and our friends who have become our extended family. A happy boy, a happy birthday.
We went to a great event tonight at the Children’s Discovery Museum of San Jose called Play Your Way, an evening designed for autistic children and their families. The museum has some strong appeal during regular hours, but I’ll admit I do not go out of my way to take the kids there because sometimes the acoustics are just too much for Jack, and with two stories of play area it is easy to have my children want to go in two different directions. When Jack gets tired out he likes to be in his wheelchair so it can be hard to take even the minor detour to wait for the elevator because stairs go directly to where Katie wants to go.
This evening is different. It is an almost obstacle-free evening set up for Jack, and for his friends. The number of people invited to the museum was limited, which makes the space much easier to navigate with a wheelchair, and there is a lesser chance that Jack will drag his hands across another person when we are walking. The museum staff created quiet spaces for kids who needed some down time, and there were icons near each of the areas so parents could create a social story if that is their kid’s thing. The staff was expecting us, and our particular group of whoops and stims. Friendly, inviting, it was exactly how a kid’s museum should be.
Jack had a great time. I let him lead, which he doesn’t get to do very often because of safety concerns. He wasn’t just let loose while we were there, but I wasn’t worried when he made a run for it and circled the entire archaeology/paleontology exhibit. It was a safe environment to practice. Yes, there were a few parents that looked at us as we raced past, but it was more of a look of “Hmm, I wonder how their family handles this situation?”
I also noticed how much fun my daughter was having. Yeah, I know she can adapt easily to almost any environment, but the one thing that seems to follow her wherever she goes is her family. And you know what? Shawn and I are more relaxed when we are in environments that meet Jack’s needs. Our home, my sister’s house, the Lake House, a few friends’ homes. There aren’t that many places where we can let our guard down. Not many places where I do not feel judging eyes. As the years go by I’m less affected by strangers’ stares, but it is just so much easier when they aren’t there to begin with.
I’m so glad we went this evening. My children were both happy, the exhibits were interesting to us as parents, and gave us something to explore with the kids. What’s even better is that this event wasn’t expensive, it didn’t take hours to get to, and we didn’t need any special equipment to enjoy ourselves.
I don’t expect the entire world to change for my son, but one night, for a few hours, it’s lovely to have a public place become easier for him to access.
Jack doesn’t fit the mold. Not the mold for a typical kid, not the one for cerebral palsy, not autism, not ADHD. Whenever we try to "box him up", another piece of him pops out, unexplainable by a typical convention. I like it that way. I know I didn’t fit into the parameters that were set up for me as a kid, and I do my best to keep growing and changing so I can steer clear of the typical; “what I am supposed to do.”
The problem with being outside of the norms is that other people don’t always know how to handle you, or help you, or befriend you, or teach you, or be your doctor, or your therapist. People become exasperated, they assume less of you, they ignore you.
And some of that might happen out in the big bad world, but my son isn’t having that experience at school, not ever. We are so lucky because we have a group of professionals that really does get my kid. Sitting in his IEP listening to one educator talk to a therapist about Jack it was clear to me that they really understand that Jack is an individual, not just a kid with a label, or a few labels. They are constantly looking for ways to motivate him, engage him, and teach him.
I love that the expectation is that he has an opinion, wants to learn, and we just haven’t figured out all the best ways to help him communicate. It is comforting to know that they meet him where he is, but demand much of him. And it is a relief to have my suggestions interwoven into his educational plan so that we are creating goals for Jack that will move him forward at home and at school.
No one is cutting and pasting goals from another kid’s IEP to fill in the blanks for Jack’s 60+ page plan. We have all agreed that Jack is not going to perform the same task (finding his name out of a group of words) ten times in a row just to prove to you he can do it. He might do it twice, and one extra time for a new aide, but after that we know he’s not going to play your boring game. So we’re trying some new things this year. My favorite new thing is that I’m making a list of facts that Jack should know about our family, our life, and our community. The teachers will have this information, and using icons, pictures or words, will be able to ask questions that Jack will be able to answer. And once we can all agree on his level of knowledge there, with known facts, well, maybe we can move on to teaching him information, then quizzing him on that information: Are there sharks in the San Francisco Bay? What is at the Earth’s core? He loves science shows at home, so we are going to build on that.
As different as Jack is from how I was growing up, he is still my kid, and he’s my husband’s kid; he’s our genetics, and my husband and I have always wanted to know the answer… to everything. I want to make sure that we are giving Jack every opportunity to learn about things he is interested in, even if he’s not “talking” about it, or writing a book report. We need to provide him access to information that he just can’t get to by himself. And I am thankful that there is a team of people who are looking for every way to feed that brain of his.
It’s a great feeling to watch our children with special needs develop new skills, especially when those skills are hard won, and perhaps unexpected.
Having a child with special needs means letting go of all of those charts and posters that tell us milestones happen in some orderly fashion. Being this parent means welcoming a different drumbeat than you had planned, and doing so without resentment, because there are no guarantees, no promises about the kind of child we would welcome into our lives. Milestones that some parents will never notice are moments that have etched themselves into my mind because they represent so many, many obstacles Jack has overcome.
I remember the fist time Jack used his left hand productively-- he grabbed a tortilla chip and fed himself. That’s it. That was the big deal, but I remember the restaurant, and where I was sitting, and I knew that he had just gained a skill that would change his life forever. I remember when he held his own sippy cup. Shawn and I cheered in a little Indian restaurant, and relished the sense of accomplishment that Jack displayed, smiling as he independently waved his cup around.
There have been other moments over the years; when he could stand on one leg, put his hands through his shirt without assistance, when he scooted over in the booth to let someone else sit next to him. They are moments that get lost with a typical child, but the significance has never been lost on me when Jack has gained these new skills. Proud shining moments, occasionally tears, and always many warm congratulations to Jack.
But what happens when gaining a new skill means more potential danger? When a new skill comes before a solid-enough demonstrated understanding of the consequences for utilizing those skills?
When our daughter walked… very early, she wasn’t quite aware of all the things that can go wrong when you run across a tile floor, including not being able to stop quickly. At 8 months she ran across the kitchen floor, directly into the corner of the open dishwasher I was trying to load. Three stitches later she had learned her lesson, and began to slow down before obstacles.
But when Jack first could reach into something and pull out what he wanted he was taller than the counter. He wasn’t a ten month old reaching into the bin of blocks, he was seven and he reached into the sink with one hand and pulled out the dirty knife I had just placed there after making dinner. Yes, he grasped it by the handle and not the blade, so it is possible that he was merely curious, but our inability to communicate effectively with him left me with only one good parenting choice: prevent it from happening again.
When he mastered crawling at age six he chose to use the skill to go out the dog door and onto the deck. He still loves to play outside, any time, anywhere. But because I could not be sure that he would not go into the dog’s side yard, and into biohazards, and bramble, I once again had to ensure that he could not get out.
And just this week, Jack, who had been in his room, quietly asleep, undid a simple gate, which he has done before, walked up the stairs, twisted the back doorknob and went out the back door into the cool night.
Shawn heard him, jumped up, and brought him back inside and led him to bed, because regardless of his neurology, it was a school night, and too late to play outside.
Now what? I am beyond thrilled that Jack can twist open a door knob. The fine motor skills! The independence! The whole idea of opening a door and getting out of the swing of the door, and walking through calmly, it is so amazing. It is so exciting to see that he is gaining the kinds of skills that will keep him safer if there is an emergency, and skills that move him towards more independence, which is what we want for all of our children. I am so very proud of him.
I am also terrified, and looking for door alarms and have purchased security cameras, because for all the desire I have for my son to gain skills and independence, and move freely through this world, I am still responsible for his health and welfare. As his guardian, I need to keep him safe, and as much as I think I know my son, and have a fairly accurate ability to ascertain what he understands, I am at a loss here, because I cannot determine conclusively how much he understands about being safe, and coming home at the end of the day.
I look forward to each step he makes towards making his intentions known, his desires clear, and his needs understood. He can turn the handle and open a door now. He can tell me when he wants to leave, or go, or move on, and I want to acknowledge what he wants to do.
Now I need to figure out how to parent a child with more abilities, letting him know that I have heard him, I understand his intent, I know what he wants, I am proud of his gains in fine motor skills… and he still needs to go back to bed because it is too late to play outside.
Time for me to learn some new skills too.
I panic any time I see the number from Jack’s school flash across on my phone screen, so when they called the other day and I missed the call, I didn’t even bother to check the voicemail and called back the front office directly. I was greeted with “it’s not an emergency.” I love that his school knows that is my first concern. The next thing I heard was,
“It’s time to schedule Jack’s IEP.”
In the past, hearing that phrase would have made me panic too, and living in a state with lots of budget cuts and schools that are trying to save money in every way, it does still set me thinking about how we are going to meet Jack’s educational needs. I know lots of families that spend hours and hours and have lawyers and have been through litigation to get their children the therapies and services they need. There were a couple of years, before we got things right, that I felt like just getting people to show up at the IEP was going to be the break down of the process, but over the years I feel like things have gotten somewhat easier. It’s always been clear that Jack had significant needs, which means there has always been discussion as to “how much” rather than "if" when we spoke about services. I know there are some people whose needs are less obvious (but no less significant) who have a harder time trying to get the help they need to get access to education. We have a great team in place at the school district, and Jack’s teacher is thoughtful, caring, and above all, interested in educating my son.
IEPs are still emotional for me though. As each educational professional goes through Jack’s deficits, and attempts to clarify what we need to focus on in the coming year, I must remind myself that numbers do not make up my son; that his low scores on a test do not indicate his worth. There aren’t any exams in our educational system that value or rate his earnest desires, or how he enjoys the water, or loves his family.
Last year I noted that there was a subtle difference in how Jack’s test scores and evaluations were reported. Before each summary, nearly every educator prefaced their conclusions with a comment about what they did know to be true about Jack, something that was relevant to the subject, but untestable. Someone mentioned his great sense of humor, someone else talked about how he loves to be outside, and that he taps his fingers in time to the music-- he has friends at school, and he wants to know who the heck the new aide is in the class. They talked about the child who showed up to take those tests...the punky, teasing kid, the one who lets you know when he needs a break by slowly dropping each piece of the testing materials on the floor, or by stealing your pencil.
They spoke about Jack by name. They spoke about him respectfully, like he was in the room (he hasn’t sat in an IEP yet, something we are talking about now…) It makes it so much easier for me to set goals, approve services, and attend to the meeting when I think that the conversation is really about my son, and not just about getting through some paperwork. It’s still all business at the end of the meeting with signatures and copies of everything, but before that, it really feels like we are talking about the best way to provide my kid access to education, and for that I am so very grateful…
It can be hard to see change in our children when we are up close and parenting, but things seem a little different around here. Summer has been close quarters in our family, with road trips and camping, but I know that this was a good summer for both of my kids.
Just as school was rounding out, Jack started in a new classroom. New routines, new classmates, new aides, I worried that his transition would be difficult, but he only came home happier and standing up straighter, and summer school was a perfect way to get used to all that new before he starts back at school this week. I think he's looking forward to going back.
He started and ended his summer with camp, a place where he has always gaind new skills in a quick time frame. His counselor noticed a difference in just a few days that he had increased patience during meals, and learned to gently tap her hand for more of what he wanted. At home yesterday he held a single finger up in the air in front of his mouth to indicate "just a moment, I'm not done." Providing us with more communication cues will make us better aides, and make things so much less frustrating for him.
And he is spending more time 'with' us, with me, and his dad, and sister. He's been coming into our bed in the morning, a ritual that his younger sibling still enjoys, and he's lingering on the couch with us after dinner, especialy if we switch to MythBusters or his dad's favorite car show. He's cuddlling up a little bit more, letting us get physically closer, staying still for a a kiss on the shoulder from his sister, leaning in to an arm thrown around his shoulder by a grandparent. At an age when most young boys begin to shrug off hugs and kisses from their parents, I think Jack is just getting warmed up.
It seems his coordination is better, he can stand on one leg a moment longer so we can get a shoe on his other foot, and he's shimmying into his clothes easier. He can scoot over in a booth with ease, and back up a few steps. He is using leverage to get in and out of the car that is higher off the ground, and ducking under things to play in the back yard.
He's showing more preference, or at least he's answering when I offer him choices: chocolate or vanilla, red shirt or orange shirt, stay in the living room or go to bed. It makes me so happy to think we might be closer to hearing his needs. I am thrilled when he and his sister 'talk' in the back seat. She asks him questions and he touches her hand to choose the answer.
I'm not sure that all of this happened over the summer, but with all of the sunshine, and family, and blue skies, and happy, and music, and wonderful times we've had, I think it's possible. Cheers to summer, and to change.