Tag: child development

Autism: Now What? Six Things I Wish I had Known When My Son was First Diagnosed with Autism

By Katie Wahlquist

“Probability of Autism Spectrum Disorder: extremely likely. Level: very severe.” Those were the words that jumped off the paper when I was handed the testing results of my then-two-year-old son Adam’s visit with the pediatric psychologist. Was I surprised? Not even a little bit. Adam was born almost three months early, so we were always operating on a different time schedule when it came to developmental milestones, but when his second birthday came and went without so much as an attempt at speech, not to mention his lack of eye contact, unusual behaviors that could not be written off as “the terrible twos,” and his extreme obsessive tendencies, it was pretty clear that we were dealing with something more than a developmental delay. So was I surprised? Of course not. But was I ready for that diagnosis? Of course not!

I didn’t realize it then, but that was my first in what was soon to be many lessons on parenting a special needs child: my life was now all about contrasts. Like Charles Dickens wrote, “It was the best of the times, it was the worst of times,” that reality was now my everyday life! It’s frustration and joy and fatigue and elation and heartache and love and annoyance and humility and despair and hope and guilt…all at the same time and all before 10:00 in the morning!

Adam’s twelve years old now, and this journey just keeps throwing new curve balls my way. Adam still hasn’t spoken a single word, he’s still not potty-trained, and his behaviors are overwhelming to deal with on a good day, but I have learned a few basic principles over the past ten years that have helped me to stay positive and move forward with joy. Please note that in no way do I consider myself to be a superior parent to any other parent. I cringe when people say things to me like, “Oh, you must be such a special person to have been blessed with such a special child.” I know that these comments are almost always given with love, but I don’t think there’s some special place in heaven reserved only for special needs parents. These truths apply to ALL parents, whether you have a special needs child in your life or not. Also, I want to stress that I am not a professional therapist or medical practitioner; I’m just a mom with a pretty amazing kid.
Which brings me to my first point…

1. You are the expert. Period. Now, don’t get me wrong: raising and caring for Adam is a team effort. We love the teachers, doctors, and therapists we work with. They have become part of our family, and I believe very strongly that becoming allies instead of enemies with the people who are treating and caring for your child is CRUCIAL to your child’s success. Adam’s teachers and therapists love him, and I know that their goals and my goals for Adam are the same, but at the end of the day, no one knows your child like you do. No one. And don’t doubt it. I remember walking into my first IEP meeting (to create a specialized education plan for his school), being surrounded by people who (I thought) knew everything there was to know about Autism (spoiler alert: no one does). I listened to their ideas and suggestions in awe, watched as they started writing down goals and the methods they would use to achieve them. I remember thinking that I really didn’t need to be there, it was just a formality. And then, one of those wonderful teachers looked right at me and said, “What do you think would work, Mom?” They wanted my opinion? Wow! All of a sudden, I realized that I had the power (and responsibility) to shape what Adam’s education was going to look like, and maybe I did know a thing or two that these experts didn’t. After all, they didn’t know that Adam needs help blocking out environmental stimulation before he can focus on a task, or that he will never, ever respond to a loud voice. They didn’t know that music is always the best way to calm him or that he will move heaven and earth for Nacho Cheese Doritos.

(By the way, this same principle applies to other areas of your child’s care as well. I could tell you a really sad story about how Adam broke his jaw last year because he was obsessively grinding his teeth together and we didn’t know about it for two weeks because I didn’t trust my gut feeling that something was wrong with his mouth, more than I trusted the multiple doctors who could not find anything wrong with Adam during those two weeks. I could tell you that story, but I won’t. *cough cough*)

So listen to your team of experts; love them, show your appreciation to them, be open to their suggestions, come up with a plan together. But understand that YOU get to have the final say when it comes to your child.

2. Educate yourself like crazy! Now that we’ve established that parents are the experts, go out of your way to become one. Understanding why Adam has certain difficult behaviors has made all the difference in the world as I try to cope with them. Adam does a kabillion things that drive me BONKERS (like smelling every person we meet, crawling into the tiniest spaces and refusing to come out, licking the walls of every single room in our house, freaking out when he sees people wearing socks, etc.), but when I started learning about the reasons why Adam might be acting in these ways and the science behind it, suddenly it was more fascinating to me than it was annoying. I’m also better able to make informed decisions when I understand what’s happening, especially if I combine my knowledge with my gut-feelings (see point number one). Do I screw up those decisions? Oh yeah, all the time. It’s going to happen, and happen a lot, but when I’m putting in the work and trying my best, I have much less guilt when it does.

A NOTE ABOUT EDUCATING YOURSELF: This may come as a shock to you, but not everything you read or hear is true. Misinformation is rampant in the special needs world, so make sure that you are looking to trusted resources and professionals and not letting yourself get caught up in promises, claims, or therapies that will accomplish nothing but feed you a lot of false hope. Do your homework and know what is legit and what is not.

3. Chill out. Guess what, super mom? You’re not “Supermom” (See what I did there?). Let’s just get over that right now. Being a parent is hard work, and when you throw in the stress of caring for a child with a disability, it’s downright overwhelming. You absolutely cannot do it all, and that’s OK. In my perfect world, I would sit in my spotless house on the freshly vacuumed carpet with Adam and spend 4 hours every day working on communication skills on his iPad. We would build an impressive core vocabulary, all while dinner (gluten-free, of course) cooked on the stove. In reality, I spend those four hours picking up the trail of Cheerios Adam leaves all over the house, while trying to figure out what I can get him to eat before giving up and handing him a bag of Cheetos. And that’s OK. I can’t try every new therapy and every new medication I read about. I can’t be twenty-two places at the same time. I can’t neglect myself and those I love to care for my son. Adam is not the only member of this family, and I have to remind myself often that we cannot let everything revolve around him all the time. That might mean that I’m not going to enroll him in the amazing charter school in the next county, because I have a daughter who needs her mom to be available to take her to piano lessons or discuss the drama of high school relationships, and I can’t do that if I’m in the car for two hours with Adam every day. That might mean that I need to accept the offers of help from family and friends and not feel bad when I tell the PTA President that I can’t be in charge of the Book Fair. Focus on the big picture, do what you can, ask for help, and let go of the guilt!

4. Flip your perspective. I think I’m a naturally selfish person, because most of the time, I tend to view Adam’s Autism in terms of how it affects me (how I have to adjust my schedule, how he dictates what I am able to do, how I have to adapt just about everything in my life for him) but I’ve really tried to consciously consider how it affects him. How terribly frustrating it must be to not have the ability to express your thoughts, to have little control over your day-to-day activities, and to be completely overwhelmed by and unable to process the sights, sounds, and emotions in your life. It breaks my heart for him! BUT, despite all of that, I can think of no one who is more full of life, love, and joy than Adam! Adam’s not stressed out by the projects on his to-do list, he’s focusing on how the wind feels when it blows through his hair. He doesn’t care if he has the latest iPhone, he’s just as happy with a couple of helium filled balloons. The world is new and different every day for me when I try to see it through Adam’s eyes; it’s brighter, more complex, and nothing is ever mundane or ordinary, and that perspective is one to be envied and celebrated! There are times when it feels like I’m viewing the world while standing on my head: everything is upside down, it’s dizzying and confusing, and I feel like I might throw up, but oh, how beautiful the world can be when I see things in a different way!

5. Expect your child to achieve. I get it. You have this fragile little person and you just want to take care of him and do everything for him because you love him so much, right? Wrong! I found myself in this trap early in Adam’s diagnosis (and still find myself in sometimes now), but luckily for me, I came across a remarkable special needs mom who taught me that even though you feel like you should do more for your special needs child, you actually need to do less. Learning does not come as easily for Adam, and my tendency is to swoop in and make things easier for him, but the only way Adam is ever going to master a skill is if I don’t keep doing it for him. Crazy, right? Do I want Adam to learn to buckle his own seat belt? Get himself dressed? Write his name? Then I better back off and let him do it. I can’t even count the times that Adam has surprised me by whipping out some skill that I was sure he couldn’t do without my help. With Adam, there has always been a gap between what he could do, and what he would do (I laugh every time I hear an adaptive physical education teacher tell me that Adam can’t throw a ball; he sure doesn’t have any trouble throwing other items like shoes, shampoo bottles, or bagels), but when someone comes in and actually expects Adam to achieve, he almost always rises to the occasion. I firmly believe that EVERY child is capable of learning and growth, but we’ve got to stop making excuses for them. Have realistic expectations, but make sure you have expectations.

6. Laugh. All of the time. I saved this one for last because I think it’s the most important. Humor has saved my life. Autism is hard, but Autism is funny! When my next door neighbor calls to tell me that she just found Adam lying in her bed, I have to laugh (and also apologize and install a high-tech security system). When I watch Adam eat a piece of licorice like it is an ear of corn, or pick up the piles of random household objects that he very artistically arranges on my kitchen floor, what else can I do? I laugh! When the principal calls me to say that Adam is lying in the sun and won’t come in from recess, I wish her luck and I laugh! When Adam’s teachers send me pictures of him wearing hairnets over his face, or I notice that Adam has unscrewed all of the lightbulbs from the living room lamps and laid them neatly by the fireplace, I laugh! When I discover bags of Cheerios stashed in our heating vents, or watch him calmly remove ice cubes from the freezer and put them inside my pillowcase, I laugh! When he wears snow boots to school every single day of the year, puts on a life jacket and lies down on the front lawn, removes all of the canned food labels in the pantry, what do you think I do? I could go on, but I think you see my point. Laughter changes everything when you find yourself in a high-stress environment, and it has been my saving grace. Cultivate the ability to find humor in the unexpected, and your life will be so much easier!

There are so many other lessons I’ve learned from this boy, and I’m sure I will continue to learn from him for the rest of my life. I will never sugarcoat it and tell you that it’s easy; I am overwhelmed every single day. I often think to myself, “I want off of this crazy roller coaster!” If I could take Autism away from Adam, I would do it in a second! But would I ever want to change who I’ve become because of Adam? No way! How else could I have learned what it means to love unconditionally so effectively? How else could I have taught that to my daughter? How else could I have seen my husband’s quiet strength so clearly? How else could I have learned to rely so heavily on my faith? How could I not be grateful for the tremendous growth and love that have come into my life because of Adam? So please, never feel sorry for me because of the demands of taking care of Adam; I think when it comes right down to it, I’m going to be just fine.

But I swear, if I have to clean up any more chocolate lick marks on my wall…

Katie Wahlquist is a wife, a mom and a lover of homemade cinnamon rolls. She lives with her husband and two children in Utah.

The Messy Magic and Choatic Splendor of Child-Directed Play in Our Home

Brittany Graham from Utah’s FOX 13’s The Place recently asked for my opinion on a blog post titled, “Get Out of the Play!”. I loved it and ended up writing my thoughts in this post about how our family allows child-directed play in our home.

VIDEO: See Tera talk about the magic of child-directed play on FOX 13 The Place here.

Stop by my house at anytime and you’ll not find the spotless, well-kept, Pottery Barn decorated images filled with littles dressed in clean, adorable outfits with perfectly done hair… These were the images of my dreams before my husband and I started into the magical journey of parenthood.

Instead, you may find a yarn ball explosion with children creating pulleys across railings, hallways and doorknobs or a make-believe laser beam obstacle course as they challenge each other to make it across the hallway without setting off the “deathly laser beams”. Maybe you’ll find a collection of bugs with leaves and dirt in containers sitting by the collection pile of very special sticks gathered over the months from our hikes on the trails and walks to the park. You might look in the back yard to see a princess in a sparkly gown and tiara digging for worms in the mud. Walk upstairs and it could be some “witch’s brew” of magical ingredients being stirred in the “witch’s cauldron” or more realistically described as hundreds of tiny scraps of different-colored construction paper being thrown across the floor. You might find the goofiness of inserting a balloon head on top of a brother’s head in his hoodie! If you peek in my freezer, don’t be alarmed by the dead baby snake in a plastic bag that my son was sure he needed to save for further exploration!

These scenes of mess and chaos may give you anxiety. They have almost given me a few panic attacks, but usually, after several deep breaths and reminders for more deep breaths, I’ve stopped myself enough to share the magic and splendor of childhood play through their perspective. As my children are growing, I now swoon over the long days of tired and exhausting bliss and wish they weren’t passing so quickly.

In my training as an occupational therapist student at Colorado State University, I was fortunate to have studied with Anita Bundy, ScD, OT, FAOTA, an internationally recognized expert on children’s play. In addition to my general pediatric OT studies, I also spent a semester with her studying play. I’ve been fascinated with children’s play ever since.

As a practicing pediatric occupational therapist for over 15 years, I’ve spent my career therapeutically using, studying and intervening to support children’s play to improve their everyday lives. Twelve years ago, I started my journey into motherhood, where play was an everyday event in my own home. My OT studies and career have made me a better mom and has had a definite and strong influential impact on my parenting style and philosophies.

What is true play? According to Anita Bundy, basing her theories on the work of previous play experts, play is characterized by three important aspects:

Play is intrinsically motivated. Play is done for the pure enjoyment, excitement and interest for the process itself, not for any end result, product or destination.
Play may extend the limits of reality. Play can always include purple unicorns in a magical kingdom, jet packs that shoot you to Mars, pixie dust to make you fly through the sky, magical staffs to cast spells, spoons becoming phones, empty paper towel rolls transforming into telescopes, pool noodles making excellent swords… True play is never limited by reality.
Play allows the player to maintain control. If another takes control of the direction of the play without consent or the rules of the environment are overly restrictive, true play is lost.

As adults, we feel a heavy responsibility to guide and raise our children to be happy, healthy and successful individuals. We see the end result and feel responsible to be sure they arrive at that destination. We tend to imagine the direct path they will travel to their final finish line of happy, healthy successful adult.

I’ve seen parents at the park telling children to keep their shoes on, not play in the dirt, don’t climb so you don’t fall, don’t throw grass, don’t get wet… with a constant barrage of direction and intervention to make sure the child doesn’t get hurt, doesn’t break adult rules of politeness, doesn’t get dirty, doesn’t make a mess, doesn’t mess up their hair, doesn’t make anyone wait too long… I do believe these parents’ intentions are good. But this constant adult direction doesn’t allow a child to fall into the process of true play defined by intrinsic motivation, suspension of reality and a sense of control.

Play is the work of children and if you observe children deep in play, they are intent, focused and in an absolute sense of enjoyment. Children learn insurmountable amounts of essential physical, emotional, cognitive and social skills necessary to become happy, healthy and successful individuals through years and years of true play. They take risks to stretch their abilities. Yes, risks that will often cause adults to feel uncomfortable. When we get in the way of their play process, we impede their development of these essential skills and opportunity to build confidence in their own abilities.

So, how can adults allow and protect child-directed play?

Create and protect time for child-directed play. Allow downtime each day without scheduled activities or screen-time where they are passively entertained. For me, I have to be patient and slow myself down and remind myself that during this time, we are on the child’s time table. I’m constantly monitoring my rushed thoughts so we can spend our time together enjoying the journey, not focusing on the destination. So, when my son spends so much time collecting and intensely inspecting hundreds of rocks on our hike that we never make it to the final waterfall destination with everyone else, that’s ok. We shared in the splendor of collecting and over-filling our pockets with all the special rocks we could find.
Create and allow physical space for child-directed activities. Where can your children build an obstacle course, paint pictures, dress up, make-up their own dance, perform in a marching band, explore bugs, jump, run, wrestle…? For over 10 years, we had a huge bean bag instead of a couch downstairs to allow jumping, crashing and wrestling. That was the main attraction of our house for friends coming to our house to play for many years. Our children have spent endless hours climbing up a table, jumping, flipping and crashing into the bean bag over and over.
Allow messes in the space you’ve created. Let them play with their food, play in the mud, jump in the puddles, play with play dough, paint… My children wear old play clothes to the park. Hair gets messy and dirty feet are common. Set some boundaries for the mess, but allow the mess to happen. My daughter had so much creativity oozing onto walls, scratching into car doors… So, we painted chalkboard walls in the playroom, bought an easel for painting and allowed her to draw anything she wanted on both sides of her bedroom door since the door had a hole and eventually needed to be replaced. We still have the door after many years and we’re keeping it for more creativity. Don’t stress during the process and leave clean-up until the end. Messes give many great opportunities to teach cleaning up.
Allow risk-taking behavior within physically and emotionally safe environments. Will your child get bumps, bruises, feelings hurt? Yes, again and again and again. We all learn best from mistakes rather than being protected from ever making one. Let children do this also. Keep children safe from life-altering injuries, but falls, bumps, bruises, cuts, even broken bones will heal. Kids learn their own vigilance to keep themselves and others safe in their risk-taking behavior. Allow time for children to try to negotiate and solve social disagreements on their own. They will began to recognize how others react to their own behaviors and how to work together. Be available to help, but not too close to interfere (reading a book, folding laundry, talking to friend). If needed, use problem-solving questions such as, “What might happen if you jump from the top of the slide?” Or, “How can you all solve this problem together so you all can have fun?” Stay away from adding more and more defined restrictions like, “No running. No climbing….” My sons love to climb. I remember the day my oldest son decided to climb a huge tree and shimmy his way to the edge of a very high branch at our local park. While I was watching closely from a short distance, several other moms rushed to the tree and suggested he should get down so he didn’t fall. I knew he was taking some risks, but I knew my son and his abilities and allowed him to stretch that day. If he fell, I was watching and could immediately run to help him. He didn’t fall and fully enjoyed the journey to the edge of the high branch and back.
Leave your own plan behind, take your children’s direction and follow them into the magic of childhood. Let your children amaze and delight you! Enjoy it as much as they do! One Christmas was extremely busy for us as we were remodeling another house and planning a move. I only had time to set up the Christmas tree, not decorate it. One day as I was working on a project downstairs, my children, ages 2-6, took responsibility to decorate the tree themselves. My 4-year-old daughter organized her brothers and they searched out tree decorations together… stuffed animals, hair accessories, loose parts of school art projects, socks, ribbons, bracelets, watches, baby blankets, old wrapping paper, an old plastic hose to a small ball pump, superhero figures… Never would I have allowed this to happen with my idea of an ideally decorated Christmas tree… until they pulled me by my hand up the stairs to excitedly present their decorated Christmas tree with such pride in their work! This will always be one of my favorite Christmas memories!

It’s all about balance. There’s a time for adult directions, structure and reality. There’s also a time for the child to have control, give direction and lead. In my professional and personal experience, the cost of mess and chaos is worth the benefits of the journey through the magic and splendor of child-directed play!