Tag: special needs diagnosis

I’m All Right Book Review by Larry Haddock, a survivor of a Traumatic Brain Injury

I’m excited to share Larry Haddock’s book about his life and experience with a TBI (Traumatic Brain Injury). Larry and I met at Brigham Young University during our freshman year. He and his friends were just as Larry describes them in his book. Since I’ve known Larry, he’s always had a zany sense of humor and has no shame about it. Larry loves to make people smile and laugh. Larry and I were acquaintances during this time and I’m grateful that we knew each other well enough to remember one another when we met again 5 years later. After graduating from OT school in Colorado, I started my first job as an occupational therapist in Ogden, Utah, where I’d grown up and Larry’s family had recently moved. In that small circle of therapy in Ogden our paths have crossed many times in the past decade and a half.  I loved reading Larry’s book and recognizing his humorous optimism among the names of BYU college friends and therapy friends from Ogden. Larry has often reminded me as we’ve crossed paths, that my OT title really stands for “occupational terrorist”.

Larry survived a car accident after he had recently returned home from a mission in Spain for the Church of Jesus Christ of Latter-Day Saints and was attending Brigham Young University. His book shares his life story, highlighting important experiences and people before and after that have kept him strong through his life-altering traumatic brain injury.

I am inspired by the picture of Larry’s determination in the rehab gym, wearing a sweat-soaked t-shirt, walking on a treadmill while an uneven thump of his left foot is heard in the background. Larry’s friend, Hope, describes this scene so perfectly in the forward of the book. Larry inspires me to keep pushing through life’s challenges, even at a slow pace and in my sweaty mess.

Larry and I started out on similar life paths. Our paths look quite different now. I’ve often pondered this. But as I read his book, I realize that our life’s missions are still the same. We are still striving for the same purposes: serving others with Christ-like love,  enjoying and caring for our spouses and families, and continuing to progress personally and professionally. Larry and I (and many others) are all still very much the same in our purpose despite the difference in our life’s circumstances. Larry gives me hope and inspiration to keep going despite my challenges, with a smile on my face.

This book is quite an accomplishment for Larry and I only expect more from him in the future. He not only inspires, but gives a realistic picture of life after a TBI. Anyone in the Utah area who reads this will also be introduced to a variety of community resources that Larry has found to support his quality of life to continue to participate in fulfilling his life roles.

Larry truly has a gift of optimism to inspire others. Larry’s voice in this book is the real, authentic Larry. He’s been blessed with such a wonderful support system of family, friends and professionals who have made possible his determination to reap the rewards of accomplishment. All will be inspired as you read Larry’s story.

You can buy Larry’s book at lulu.com. He also did a short interview about his book on Good Things Utah.

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.

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

 

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

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!

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!

 

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