Category: Special Needs

How to be a Friend to Someone with Autism

Happy Autism Awareness month and Happy Occupational Therapy month this April! What better way to celebrate than by sharing some tips on how to be a friend to someone with Autism from an OT!

Most likely, you know someone with Autism. Most likely, you want to be kind and friendly with them, but are not quite sure how to interact and go about building a friendship. They may act differently from you, but they share a similar desire to have a friend with whom they feel safe. They and their families appreciate when someone will take the time to really get to know them and build a friendship. Over many years, I’ve been able to enjoy many friendships with people who have Autism. My Autistic friends make me smile! I’m grateful for the many lessons they’ve taught me and the memorable moments we’ve shared.

VIDEO: See Tera talk about how to be a friend to someone with Autism with FOX 13 The Place here.

 

CHARACTERISTICS OF AUTISM

When interacting with someone with Autism, it’s important to recognize the basic defining characteristics of Autism. As you’ll notice, these defining characteristics listed below make social interactions especially difficult for them. Recognize that all these characteristics may make the Autistic person uneasy with a new person initiating social interaction, but does not mean people with Autism do not want friends!

  • Social Skill Difficulties
  • Communication Difficulties
  • Repetitive Behaviors, Routines and Isolated Interests
  • Sensory Processing Difficulties

“THE SPECTRUM”

“Autism Spectrum Disorder” is the official name of the Autism diagnosis. “Spectrum” is used to define a very wide variety of behaviors that encompasses the above characteristics. Each person with Autism will exhibit these characteristics very differently. Each person with Autism is unique and building a friendship with them will mean you must get to know each individually. Below are some clusters of behavior you may see from people on the Autism Spectrum.

Social Skill Difficulties: 

  • May not make eye contact; may be uncomfortable being close in proximity to new people; may find different ways to get your attention, such as throwing objects.
  • May not recognize social cues as to when to stop talking; may not recognize how to enter a group to socialize; may have difficulty learning to share with others.

Communication Difficulties:

  • May not speak, but understands many words or phrases; may only repeat words or phrases; may use alternative ways to communicate, such as pictures or hand gestures.
  • May speak and understand well, but very literally; may not communicate tactfully; may talk excessively.

Repetitive Behaviors, Routines and Isolated Interests:

  • May use movements, such as flapping hands or rocking back and forth, when excited or nervous; may enjoy playing with the same objects or doing the same activities over and over, such as lining up cars or watching fans spin; may get nervous and upset when going to new places, getting new shoes, having furniture moved out of their familiar spot or having new people in their safe environments at home or school.
  • May want to talk about the same topic in detail all the time, such as Minecraft, Pokemon or dinosaurs; may not recognize subtle social cues that you are ready to change subjects or stop talking; may get stressed or not function well through seemingly small changes, such as a new haircut, long holiday weekends or an assembly that changes the school schedule.

Sensory Processing Difficulties:

  • May be over-sensitive to normal amounts of sensory input around us: such as lights seeming to be too bright; noises seeming to be too loud and needing to cover his/her ears; being startled and seeming to over-react to accidental bumps or a pat on the back;  refusing to touch or wear certain textures; being bothered or distracted by smells; being unable to tolerate tasting a variety of foods; being scared of movement activities, such as swinging.
  • May be under-sensitive to normal amounts of sensory input around us: intensely staring or watching others or objects, such as spinning fans or wheels; frequently humming or making his/her own noises; craving hugs, always fidgeting or seeking out certain textures to touch; smelling people and objects; licking, mouthing and chewing on many different objects, not just food; craving movement, such as spinning, jumping and rocking.

HELP THEM FEEL SAFE

When you approach someone with Autism, address them by name in a pleasant, non-intrusive way. Be calm, avoid light touches and loud entrances so you don’t startle them until you become familiar with their sensory processing preferences. Be sure to be predictable or tell them what you’re doing so they know what to expect.

Watch and observe to see if they have a toy, a book or maybe a shirt that they may have an interest in. How can you find a way to interact over something that feels safe or enjoyable to them? With people who speak, you can discuss the subject, listen and ask questions and share their interest. With people who don’t speak, how can you enjoy an activity together? Maybe you can hand them cars from a pile as they line them up, careful not to interfere in their routine. Maybe you can both hit balloons up into the air together.

LET THEM SET THE PACE

Some people with Autism may need to take your interaction slower than you’re used to. They may not be ready to look at you, respond to you or answer your questions. These behaviors don’t mean they’re not listening. You can tell them, “That’s ok. We can talk more in a while. I can wait.” Try again later. It may be that you have to do this over several encounters until they are comfortable with you. They might be willing to give high fives or fist bumps before they are ready to talk.

Don’t give up! And don’t ignore them! Most people with Autism understand more than you realize and feel the effects of being ignored. Be patient and keep trying to be friends with them.

Some Autistic people will be overly excited and want all your attention. When you’re first making friends with them, share that excitement and give them attention. After your friendship is built and you learn to trust each other, you can start to change the pace slowly to also meet your needs by talking frankly, but politely. “Hey, how about you spend a few more minutes talking about Minecraft and then I can tell you about the new things I did yesterday?!”

DON’T BE OFFENDED BY THEIR BEHAVIOR AND COMMUNICATION

Don’t assume that people with Autism are being rude, disrespectful or selfish as they interact with you or others. If you find yourself thinking that their behavior or communication is any of these things, remember they inherently process information and think differently than you, especially social communication. Quickly forgive any offense and be patient as they learn. Just as you are learning how to interact with them, they are learning how to interact with you.

Be sure to clearly tell them what behaviors you appreciate in your friendship, such as, “I like when you smile at me when you see me! It makes me feel like we are friends!” or “Thank you for sharing your toys with me! I have fun playing with you!”

POLITELY ASK SINCERE QUESTIONS

If you ever have questions about how to be a friend to someone with Autism, be sure to ask parents, teachers or friends who know him/her well. They will have insight into their interests, comforts and unique ways of socializing and communicating with others. Many parents and teachers are very happy to help others willing to take the time to understand and get to know their child/student.

If you are in a teaching capacity for someone with Autism, recognize that maintaining a safe and trusting relationship with these principles will create a crucial foundation before you can help them stretch outside their comfort zone.

Enjoy the journey of friendship with your unique friends with Autism!

 

“The most I can do for my friend is simply be his friend.” –Henry David Thoreau

The Best Ways Any Caregiver Can Support a Picky Eater

Mom is stressed, Dad’s frustrated, Grandma is worried… and a few more recognize that this little one should be eating more or have a wider variety in his diet. So, what can the village who loves this child do to help?

Every child is different and when I treat children with feeding difficulties, each child’s treatment plan looks different also. But, there are a few things that can be put in place with anyone, in any home and for almost every child that can support more individualized strategies used later.

I hear concerns about children with limited diets from parents, but also grandparents, aunts, uncles, daycare providers… The strategies recommended here are simple enough they can be implemented by anyone feeding the child. If all caregivers are working together to support the child, the positive outcomes will be seen quicker and with better staying power!

VIDEO: See Tera talk about how caregivers can help picky eaters with FOX 13 The Place here.

Make mealtimes enjoyable, fun and stress-free!

This point is absolutely the number one strategy! No other strategies will be effective without a pleasant mealtime environment and trusting relationships established between the child and her caregivers.  

Each one of us creates strong emotional memories when we eat. Think of your favorite foods and what that reminds you of… My husband absolutely loves sugared cereal… Froot Loops, Lucky Charms, Apple Jacks… Growing up, his dad had a long commute to work, so left early in the morning and came home late at night. As a boy, my husband wanted to see his dad during the day, so he would set his alarm early in the dark morning hours and eat breakfast (sugared cereal) with his dad before he left for his long drive. He’d then go back to bed to sleep a bit longer. My husband has fond memories of those early morning talks with his dad and has associated the food that he was eating with that fondness.

Now think of foods you can’t stand to eat or won’t even touch… My husband hates bananas and doesn’t even like them on the counter in our house. When he was young, he had a babysitter who was determined that he would finish all the food on his plate. He has memories of being force-fed bananas, with it squishing between his teeth as he was fighting it. He’s a grown man and still has definite strong aversions to even the thought of touching bananas.

So what emotions are swirling around your food being served at your house with your children? What’s the stress level with the adults and children? Children pick up on our adult stress level so quickly and profoundly, so it’s important that caregivers come to the table able to enjoy the meal also.

Eat together and enjoy social interactions around nourishing foods. Have fun! Create a mealtime environment that makes your child smile and feel at ease as you’re eating together. This means you may have to relax traditional table etiquette and that’s perfectly fine. Because in the long-term, we would rather have our child be able to independently eat a healthy, balanced, nourishing diet. Table etiquette rules can be implemented more fully at a slower pace after they’ve learned to acquire a taste for a well-balanced diet.

Creating a pleasant environment also means you are avoiding power struggles and stressful pressure on the child during the meal. Absolutely never, ever force feed a child! Don’t make them sit pouting at the table alone until they eat every last bite of food. Don’t require they stop eating a favorite food served with dinner because you feel they have already had too much. Part of enjoying a meal means the child feels a sense of control over their body, hunger cues and what enters their mouth. (If you’d like to learn more about this philosophy of feeding children, called The Division of Responsibility, The Ellyn Satter Institute is a great resource.)

Remember that the swirling smells and tastes of food and emotions at the table will mix together to form strong emotional memories during mealtimes. Caregivers have control over the mixture that will create a lifetime of emotional memories and food preferences.

Offer both preferred and non-preferred foods at meals and snacks. 

First off, I want to emphasize the word offer. The definition of offer is to present or proffer (something) for (someone) to accept or reject as so desired. Yes, in offering food you are presenting it to your child with the option to either accept or reject. That’s ok.

Tell your child that placing the food on the table or on their plate is not a requirement for them to eat it. In fact, don’t even ask your child to eat it, just tell them that this is what you’ve prepared and are offering them for their meal. If asking or requiring them to eat it creates too much stress, we’ve destroyed step number one of creating an enjoyable environment necessary for any other strategies to work.

A caregiver’s responsibility is to choose what foods to buy, prepare and present to nourish your child. Your child’s responsibility is to decide what and how much of that food to eat.

Make a list of safe foods your child will almost always eat. When planning your meals and snacks, be sure that at least one of those foods is always served with the family meal (not separate from the family meal). So, your family meal on the table may include goldfish crackers with spaghetti and salad for dinner or chicken nuggets with scrambled eggs, toast and orange juice for breakfast.

Now, make a list of foods your child won’t eat consistently, but you’d like them to incorporate into their diets. Be sure to include at least one of these foods at meals and snacks. I recommend offering foods everyone else is eating at the meal or snack. It’s convenient to offer a small spoonful and if it’s not eaten, it’s a such small amount that it’s not a worry when it’s thrown away.

Remember that caregivers decide what is offered, not the child. The child give some input, but the caregiver has the responsibility to make the ultimate decision. Caregivers will want to choose foods for a balanced meal with starches, proteins, fruits and vegetables. Include at least one food the child feels safe with and will almost always eat. Also include a non-preferred food that you’d like them to eat, even if you’re sure it will be rejected.

Yes, food may go in the garbage because we will allow the child to eat the food or not. That’s ok. Because food has been thrown away is NOT a reason to be a short order cook or hurry and make a second meal. The important recipe here is exposing the food to the child in an enjoyable mealtime environment. Caregivers and children will have another chance in a few hours to perform their jobs again at the next meal or snack and again after that… You can always load up on safe foods and only include one non-preferred food if the child didn’t eat much at the last meal.

Encourage interaction (not necessarily eating) with non-preferred foods. 

So far, we’ve created a pleasant mealtime environment without stress and have offered and introduced non-preferred foods into that safe environment.

For some children, just presenting a non-preferred food at mealtime, such as setting it on the table or serving it on their plate may be where you start with this step. They may not tolerate more than this. If that’s the case, don’t push any farther until they are comfortable with this minimal interaction of seeing it close by. Realize with the food even this close, they will be seeing what it looks like and smelling it, and really are interacting with some of the food’s sensory properties

From this point, you can slowly start to encourage and challenge the child to interact with the sensory properties of the food, while maintaining a safe and enjoyable environment. Look, smell, touch, listen to and finally taste the food. Ideally, interaction with the food should gradually get a little closer to the face and mouth until it is finally eaten.

Remember again that this step is where the child’s responsibility comes in to decide what and how much food they will eat. Every caregiver should absolutely respect the decision of the child. You can continue to encourage while maintaining a trusting relationship.

Support other caregivers without judgemental attitudes, especially the primary caregiver (usually Mom).

Feeding a child with feeding concerns is SOOOOO stressful! It’s hard to hide a caregiver’s stress from the child during mealtimes.

In my feeding therapy and my own mama experience, moms especially seem to carry a heavier load of guilt and worry if their child isn’t eating how they feel like they should. They also seem to hear and receive feedback and opinions from others sensitively, especially when they are already stressed.

Be supportive of the child and all caregivers. Share small successes. “She really liked helping me pass out carrots to the other children.” Or, “He seemed to enjoy making a smiley face out of his apple slices and even tasted it to his lips!”

Avoid pointing blame towards other caregivers. “If you were more strict, he’d eat more.” Or, “Well, he eats that at my house.”

Don’t sabotage mealtimes with treats, like unexpectedly showing up with a box full of donuts to eat just before dinner is being served. Ask the caregiver preparing the meal when an appropriate time would be to give treats and present it towards the end of the meal.

One caregiver can destroy a safe mealtime environment in every setting by force feeding. Never, ever force feed a child!

Seek out professional support sooner than later if these suggestions don’t help. 

Talk with your pediatrician or seek out an experienced pediatric occupational or speech therapist who specializes in feeding therapy. They can help screen for and identify underlying conditions or delays that may be hindering progress with your child’s eating and give more individualized treatment ideas. Don’t wait to seek out more support. Children who receive treatment earlier have better outcomes and often times need less professional support because they’ve avoided further complications. If you’re trying to decide if your child needs more help, this earlier post I’ve written, “When Does Picky Eating Become a Problem?”, may be helpful.

I’d love to be able to help in your northern Utah home with any feeding concerns. Happy eating!

6 Dos & Don’ts After Recognizing Your Child is Struggling & Receives a Special Needs Diagnosis

Your child’s been struggling and you’ve seen the signs, hoping that maybe your fears are wrong. You’re doing everything you can to help him and searching out resources. Maybe you are just recognizing the concerning signs or maybe you have just received an official diagnosis or maybe you’re in the middle of a long search, trying to find answers about why your child is struggling. Your emotions are intense and raw and tears are always close to the surface. The reality of your demands in caring for your child and the emotions that come along with that are overwhelming. Where do you start?

After over 15 years of working with children and adults with a wide variety of disabilities as an occupational therapist and with input from some wise and amazing parents of children with different special needs, I’d like to share 6 dos and don’ts to keep in mind while on your journey of parenting a child with special needs. The child you love is counting on you. You can do this!

VIDEO: See Tera talk about what to do when your child gets a special needs diagnosis with FOX 13 The Place here.

 

1. Do educate yourself from reliable sources.
    Don’t believe that anyone has a crystal ball to predict what your child will do or become.

“Education [has] led to less frustration for me. I learned my daughter was having a hard time, not giving me a hard time. Talking to other parents helped me feel less alone and that I wasn’t crazy,” said one mother of a daughter with Sensory Processing Disorder. She also recommends finding support groups in physical locations or online.

Another mom of a son with Autism says, “Understanding why [he] has certain difficult behaviors has made all the difference in the world as I try to cope with them. [He] does a kabillion things that drive me BONKERS…, but when I started learning about the reasons why [he] might be acting in these ways and the science behind it, suddenly it was more fascinating to me than it was annoying.”

Education helps you understand how to help and support and accommodate for your child. You will learn what can be expected and what can’t in different areas. You learn how to interact, how to create the best environments, what services, therapies, treatments, products and equipment may help. Parents who are always seeking out education will find the newest research and innovations on their child’s condition.

Seek out reliable sources and recognize not all resources are trustworthy. Ask doctors, therapists, teachers, and other special needs parents who are familiar with your child’s concerns about good resources. Internet searches will help you find many, but be ready to sift through them to find good and dependable sources and be emotionally prepared to deal with the worst-case scenarios you will find. One mom was given a diagnosis while her micropremie baby (born weighing less than 1 pound, 12 ounces or before 26 weeks gestation) was in the NICU (neonatal intensive care unit). “The doctor had given me lots of information, which I only remembered part of what he was saying [because my] emotions started kicking in. So I googled it… BAD idea… which made my anxiety even worse. Google is great, but it’s always [the] worst-case scenarios.”

Parents always want to know what to expect in the future. Doctors, professionals, experts and other resources want to give realistic expectations. But, no one has a crystal ball for what to expect for your child. Use your child’s prognosis as a guide, not a determination of a final outcome. Sometimes a child has better outcomes than expected and sometimes there are more complications than expected. Take it day by day and do your best with what you’ve learned.

2. Do create, maintain, strengthen and use your support system of family and friends.
    Don’t feel guilty for taking time to care for yourself and other members of your family.

A mother, whose child has received multiple diagnoses over several years, has had to repeatedly rely on her personal support system. After his most recent Autism diagnosis, she said, “I had every emotion you could think [of]. That’s when I really had to rely on family and of course, [my partner] the most! Having that support so you’re not in it alone makes a world of difference!!!”

Parents of children with special needs must learn to accept and ask for help from family and friends. Keep your personal relationships strong. Take care of yourself. Take care of your families. Remember that a loving and healthy home, family and caregivers are most important for your child. Never feel guilty for prioritizing that over offering every opportunity, service or experience available for your child with special needs. Find the right balance for your family.

“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. [He] 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,” says the mom of a child with Autism.

3. Do find and create a team of professionals, specialists and experts in the area of your child’s concern.
    Don’t exclude yourself from the team of experts.

Search out a team that you feel comfortable with and will listen to you. It’s OK to find a different doctor, therapist, school, etc. that you feel works well with you and your child. But remember, perfection is very hard to find, so settle for a good fit. You most likely will need professionals in the medical community, at school, and in the community. Advocate for your child by making allies, not enemies. Find ways to work together with your team, not fighting against them.

Write down your questions and concerns. Bring them to appointments and meetings. Ask questions and seek out information and resources from your team. Write down notes or ask for handouts and copies because you’ll need to remember and refer to that information again. Follow through on important recommendations from your team.

Remember that YOU are THE expert on your child. Don’t forget the importance of your input! No one knows your child like you do. During her first meeting with her son’s school, one mom realized, “Maybe I did know a thing or two that these experts didn’t. After all, they didn’t know that [he] 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.”

Realize that you will be unofficially appointed as team manager and communications specialist between all team members. Take this job seriously. Learn to gather, organize and share important information from the doctors, to the therapists, to your child’s teachers and anyone else.

4. Do create a realistic perspective of your child’s abilities.
    Don’t let your child’s struggles or diagnosis become their identity.

Children with special needs will be different from their peers. After educating yourself and consulting with your team of experts, begin to create realistic expectations for your child. Her condition may always create significant differences from others for the rest of her life. An insightful mother realized that she needed to be mindful of the way she talked to her daughter about her struggles. “I knew that how I framed [her difficulties] would be how she would frame it. She wasn’t bad or broken, her brain just had a different operating system, like computers. How I spoke to her about it would become her inner voice.”

Your child’s condition or diagnosis will absolutely define who they become, but don’t let that be the only defining aspect of their identity. I’ve met nonverbal children who are wheelchair-bound that can brighten the entire mood in a roomful of people with one smile. I’ve met children who haven’t learned to make friends with their classmates, but can explain in detail about differences in a large range of dinosaur species. A little friend in my neighborhood struggles to sit still and listen to teachers, but she has no reservations in calling any person her friend and holding their hand as they walk together.

One mom tells, “[My daughter] still occasionally says, ‘I hate all my issues!’ but I often remind her that although she has a few struggles, she’s so much more than that. She’ll eventually learn coping skills to deal with her [condition], but she’s already mastered things that are really important in life like kindness, hard work, enthusiasm for learning, and compassion.”

5. Do expect your child to achieve.
    Don’t forget to celebrate even the smallest of achievements!

“Learning does not come as easily for [my son], and my tendency is to swoop in and make things easier for him, but the only way [he] is ever going to master a skill is if I don’t keep doing it for him. 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,” says one mom. Yes! Progress is possible with hard work. Give your child the opportunity to work hard with the right expectations and support. Your team can help you and your child prioritize and set realistic goals to strive for.

Celebrate even the smallest of achievements! “We celebrate taking one tiny bite of meat or the fact that he’ll not lose his mind over something on his hands… We celebrate all the small things that are an everyday normal to some.” Involve those who know your child well in those celebrations. Not everyone will recognize what big achievements these small steps really are, so share them with your support systems and your child’s team.

6. Do live in the moment.
    Don’t forget to laugh!

A wise mother of a daughter with Cerebral Palsy says, “Live in the moment—good or bad—and [don’t] let the future dominate your thoughts. Obviously, make necessary plans, etc., but don’t let worry about future hurdles or joy about imagined future success take up much of your time. It has taken me several years, but I have learned that by living in each moment of each day, I can enjoy the surprising pleasures of this crazy adventure without borrowing trouble from my future self.”

Another mom who often shares funny stories of her son with Autism says, “Humor has saved my life. 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!” (I’ve shared many thoughts from this mom, who recently wrote a similar article about receiving her son’s diagnosis of Autism on my blog here.)

Yes, this journey of parenting a special needs child will be exhausting, overwhelming and full of sadness and tears. But, make plenty of room for joy and laughter and fulfillment with your child! Again, I remind you… The child you love is counting on you! You can do this!

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 foodallergy.org.
  • 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!