Category: Utah Community

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!

Autism: Now What?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.

 

How a Simple Teal Pumpkin on Your Porch Can Make a Difference for a Child on Halloween

Halloween celebrations always include dressing up in a costume and candy! I have so many little friends who excitedly anticipate Halloween night and trick-or-treating, including my little friends who have severe food allergies, are on special diets for medical reasons or are unable to eat food by mouth and are supported by tube feedings. The parents of these children work tirelessly to provide and support typical childhood experiences as much as possible. As children get older, they learn about childhood cultural traditions that siblings, cousins and friends do and they want to join in the excitement also.

A fun-filled Halloween night of trick-or-treating can turn into pure disappointment when candy buckets are dumped and sorted upon returning home… Only to realize that from the large loot gathered, you can only safely eat or keep a few of the treats or none at all! Everything else must be thrown away or worse, given to your siblings to eat!

You can help with some very simple things to make some of these children have an enjoyable Halloween and minimize the disappointment. Join the Teal Pumpkin Project!

Set a teal pumpkin on your porch! A teal pumpkin is a sign to families of children with food allergies and feeding difficulties that your house will be handing out non-food treats… stickers, pencils, small toys, glow sticks, temporary tattoos, etc. Many of you are already doing this, but let those families know with your teal pumpkin so they can add another house to their route of safe houses they plan to visit with their children.

My friend, Ryder, loves to dress up in theme with his parents every Halloween. Last year, he dressed up as Toothless from How to Train Your Dragon. His mom and dad dressed up as Vikings. He loves walking the neighborhood and joining in the Halloween fun. Ryder has an extensive list of food allergies and sensitivities that prohibit him from eating all but a very short list of foods. So, it comes to the point that he cannot safely eat ANY Halloween candy. How a Simple Teal Pumpkin on Your Porch Can Make a Difference for a Child on Halloween

His mom, Kim, loves the Teal Pumpkin Project and puts a teal pumpkin on their porch every year. She makes sure she has non-food treats to hand out to trick-or-treaters. When they went trick-or-treating last year in Morgan, Utah, they didn’t see any teal pumpkins in the neighborhoods they were in. Kim wishes more people handed out non-food treats. Ryder loves stickers, little toys and bubbles. Fortunately, Ryder has a sweet grandma that prepares a special non-food treat package for him every Halloween.

Confession: Several years ago I decided to plan ahead for Halloween and buy bulk bags of candy (mostly chocolate since that’s my favorite), but I ate almost all of the candy before Halloween came! Now I buy my non-food treats early and and candy last-minute to avoid my chocolate addictive behaviors! Win-win for any candy addicts like me!

My daughter loves painting a teal pumpkin and insists on adding her own artistic flair. She is excited to paint another this year to set out on the porch to signal anyone who prefers non-food treats. My sons make sure we still hand out candy for anyone else (or eat it themselves before any trick-or-treaters arrive). How a Simple Teal Pumpkin on Your Porch Can Make a Difference for a Child on Halloween

A few tips to keep in mind:

  • Set your teal pumpkin out before Halloween night so families can plan to make it to your house.
  • Keep food and non-food items in separate containers to avoid allergens touching the non-food items.
  • Avoid non-food items with latex or wheat. Some clays contain wheat.
  • If you don’t have time to paint a teal pumpkin, click on this link to download and print out a free sign at food allergy.org. Or if you’re interested in making a donation to the Teal Pumpkin Project, FARE (Food Allergy Research & Education) will send you a Teal Pumpkin Project window cling.
  • You can also add your house address to the Crowd Sourced Fever Map on food allergy.org to let others in your area know you will be participating in the Teal Pumpkin Project.

For more information on the Teal Pumpkin Project, visit foodallergy.org.

Teal and orange compliment each other well, so use both colors for front-porch pumpkin decorating! You can make such a difference for a child who struggles with feeding difficulties with this simple change in your Halloween decorations and treats handed out on Halloween night!

CAPES! (Children’s Adaptive Physical Education Society) at Weber State University

If I’d happened to have a bad day, I still wouldn’t have been able to stop smiling the night I attended the CAPES! Luau Celebration this spring at Weber State University. Children, families and Weber State student volunteers were spending their last night together before the summer break. Families and friends cheered on children, some wearing purple capes, resembling young superheroes, as they knocked down bowling pins, attempted the limbo, threw beanbags at targets and colored pictures.

I talked with families and volunteers about the program and only heard fabulous things about the CAPES! program for children ages 5-12 with developmental disabilities. As a pediatric occupational therapist in Ogden, Utah I’ve seen so many families of children with developmental disabilities struggle to find activities in the community for their children to fit into. But the night of the CAPES! celebration, these little superheroes, with their friends by their side, were fearless with nothing standing in their way of care-free childhood play.

One mom told me that her daughter often stays home while her siblings play with friends or participate in extracurricular activities. But CAPES! is all about her, and she and her parents love the fun, safe place that this program has created without any fear of feeling left out at anytime.

CAPES! is supported by Weber State University students who are enrolled in or have taken either Adaptive Physical Education or Introduction to Special Education classes with the facilitators of the program, Dr. James Zagrodnik and Dr. Natalie Williams. Each child is assigned to a student volunteer throughout the semester. They’ve created a program that builds important experiences and skills for children with developmental disabilities and students who are studying to work with this population in the future.

Drs. Williams and Zagrodnik shared students’ written experiences with me and the stories seemed to follow a similar trend. At the beginning of the semester, students were nervous, unsure of their abilities and chance of enjoying the experience, many having had very little experience with children with disabilities. Quickly, after the first or second time, students were attached to their new, younger friends and celebrating small successes with them. By the end, most students were sad their time was coming to an end, having learned valuable lessons and thoroughly enjoyed their time working with the children.

I watched the children find their student volunteers with excitement to try a new activity, which was followed by beaming faces as the student volunteers gave their full attention and enthusiastic praise. The relationships between the students and children become beneficial to both sides, with a sense of satisfaction and growth for each.

The program has spots for about 35 children each semester. If the program is a good fit, children can continue to participate for 5-6 semesters (spring and fall semesters) or until they age out of the program. They meet for an hour and 15 minutes on Tuesday nights for 10 weeks each semester, where half the time is spent in the pool and half the time doing land-based activities. Each student volunteer plans fun activities for their child to work on any skill they feel is beneficial for the child. The cost is only $25 per child for each semester to help cover costs for the use of the Weber State University facilities.

CAPES! If you are interested in having your child with a developmental disability apply to CAPES!, you can do so at weber.edu/capes/registration. You may be placed on the CAPES! waiting list if the program is full, but I believe it’s worth the wait! Take advantage of this one-of-a-kind program in our Ogden, Utah area!

April 2016 Tube Feeding Support Group with Marsha Dunn Klein

If you can make it to April’s Tube Feeding Support Group for families of “tubies” (the affectionate nickname for those fed by feeding tubes), you are definitely in for a treat! If you would like to learn more about this support group for families, you can visit my original post, Tube Feeding Support Group in Utah.

Marsha Dunn Klein, an internationally-known occupational therapist specializing in feeding, will be the guest speaker for April’s Tube Feeding Support Group!

I’ve attended a couple of Marsha’s conferences for feeding therapists and own some of her books she has co-authored in my feeding therapy reference library. She shares great and helpful information and does so with sincere compassion, understanding and enthusiasm for families and children with feeding difficulties. I’ve always found Marsha a delight to learn from!

Don’t miss this discussion with Marsha Dunn Klein on April 21, 2016 at 6:30 pm at Primary Children’s Hospital on the 4th floor in the Millcreek Conference Room! You may contact Garrett, the parent support group leader, with any questions at 801-554-0184.

Great Santa Clara, Utah Park for Children with SPD

I love finding great parks that promote active play and sensory integration for all children! My plan is to continue to find and share great playgrounds from a pediatric occupational therapist’s perspective to help families in their communities. Great play spaces with a variety of sensory input are so important for children with sensory processing difficulties!

Our family visited Archie H. Gubler Park in Santa Clara, Utah (west of St. George) last winter for a soccer tournament and I saw this great playground! (This park actually was my inspiration to share great play spaces and playgrounds on this blog!) Gubler Park is located next to the Santa Clara fire department at 2735 Rachel Drive. (The link above has directions.) GPS directions were a little sketchy when we went winter 2015, probably because of the new housing developments in the area.

SWINGING!Santa Clara, UT Park

  • 2 traditional sling seat swing seats with room to swing high
  • 1 infant full bucket swing seat
  • 1 high back seat and firm harness, ideal for an older child that may need more trunk support (To whoever designed this playground: Thank you for thinking of children with different abilities!)

CLIMBING!

  • a vertical rope structure to climb across between 2 different play structures
  • climbing structures designed to look like the red mountains in the southern Utah area

SPINNING!Santa-Clara, UT Park

  • 3 angled vertical structures that use your body weight to get you spinning
  • 1 raised small platform with a rail encircling the top, angled to use your body weight to spin and was big enough for 2 small children to climb in together
  • 1 large spinning “umbrella” where several children can sit on the poles or hang from their hands or upside down from their knees (Upside down spinning is the most intense vestibular input you can get!)
  • 1-2 small single seats supported by a single pole that spin (these were quite difficult for children to spin themselves and I wasn’t too impressed with these)Santa-Clara, UT Park

OTHER SENSORY!

  • small hiding spaces in the play structure
  • 2 small slides and 1 tall slide
  • splash pad across from the playground, open April-September
  • walking and biking trails around the entire park
  • open grass areas to run and play
  • softball fields
  • basketball courts
  • shaded areas over the playground and picnic tables
  • gorgeous southern Utah red rock scenery surrounding the area

Enjoy your sensory input! Our family loves exploring this area in Utah! Please share if you have more great playgrounds or play spaces!

If you are concerned with sensory processing for your child, I provide in-home OT services in Weber, Morgan, Davis counties in Utah.