Tag: autism

Toys and Activities to Keep Kids Active and Meet Their Sensory Needs in a Small Home

Have you ever seen an occupational therapy sensory integration room? (You’ll be jealous of my OT job if you have.) It is a fabulous, big gym with swings, balls, trampolines, mats, bolsters, crash pads and looks like a child’s dream room. If you have a child with sensory processing or sensory integration difficulties and have received therapy in one of these rooms, you’ve wished you could take this room home to help regulate your child’s sensory system each day! And if any child with or without sensory difficulties has been in a sensory room, they’ve begged their parents for a room like one of these in their own home (my own children included)!

Some families are fortunate enough to be able to replicate a big sensory room in their own home, but many simply do not have the space. Parks and outdoor play are the best sensory input in good weather, but snow, rain or even extreme heat may keep you and your child with high sensory needs inside for days at a time. Families can create environments in their own small homes to support their child’s sensory processing needs! Be inspired by this family of 5 who lives in a small home (2 1/2 small bedrooms) and has used their small amount of space wisely.

For about the past 2 years on and off, this family and I have worked together to create the appropriate environment with the right equipment and key activities to help their children regulate their sensory systems at home. They wish more than anything that they had a designated sensory room, but for now while space is very limited, they’ve incorporated important pieces throughout their home. They’ve slowly added equipment throughout the last 2 years so the expense wasn’t so big to start. I’ve asked them to share what the most important equipment and activities they use to help their children regulate their sensory systems and stay active. Even if you don’t have a child with a sensory diagnosis, be sure to look at these ideas, because any child can benefit from being active and having fun in their own home! (And any parent’s sanity can benefit from non-screen activities and equipment like this when their children are cooped up inside!)

*This post contains Amazon affiliate links. This family actually bought much of their equipment from Amazon. I’m hoping this post is informative, but also that these links will help families save time and energy if interested in using some of these ideas in their own home.

VIDEO: See Tera talk about these toys and activities to keep kids active with FOX 13 The Place here.

GYM1 INDOOR PLAYGROUND (PREVIOUSLY NAMED GORILLA GYM)

One of the hardest pieces of equipment to replicate at home from a full sensory gym is a swing. Yet, a swing is also one of the most powerful pieces of equipment to help regulate a child’s sensory system and ask any of the kids, it’s also the most fun! The Gym1 Indoor Swing is a fantastic way to get a swing into your home without a big price tag, large space or expert installation. The Gym1 package has a pull-up bar that can be installed onto a door frame without drilling and comes with attachments that can hang from the bar. The Gym1 Indoor Playground Deluxe Package includes a pull-up bar, swing, trapeze bar, rings, rope ladder and rope that attach to the pull-up bar and can be used in an open doorway. The Gym1 Indoor Playground Package includes the pull-up bar with a swing, rings and rope ladder. Or there’s the Gym1’s Indoor Swing Package with the pull-up bar and swing only. I LOVE the these indoor swings, so do the kids who live in AND the kids who visit this small home!

ROCK CLIMBING WALL

Climbers need a place to climb! Rock walls are perfect for a small home because you already have all the space you need! Dad built this wall fairly easily. He used some extra backer board leftover from a tile remodeling project. Although, he says most people typically use plywood on the walls. He used these Rocky Mountain Climbing Gear’s kids’ rock climbing wall holds with hardware. (Be sure to order child-sized holds for small hands.) The mounting hardware is easily screwed into the wall through the center of each hold. Really, rock climbing walls can be as simple or as elaborate as you want. And there’s no reason you can’t add onto it later and let it continue to grow or shrink as needed.

MINI TRAMPOLINE

Big or small trampolines will be great investments for your child’s sensory needs. I love the handle bars on the mini trampolines for stability and more sensory input into the child’s arms as they lean into it while jumping. A trampoline helps give great input in one contained spot in your house. This family bought this Little Tikes mini trampoline from Amazon. I’ve also had good experiences with the Fold n Go mini trampoline. For bigger kids, the Pure Fun mini rebounder trampoline is a good option.

POP-UP TENT AND TUNNELS

Small, enclosed spaces can create a sense of safety for an overwhelmed child needing to calm down. Pop-up tents and tunnels are great for this purpose. Tunnels are great to crawl, hide and play inside because moving inside a small space gives more proprioceptive (muscle and joint) input and creates a higher demand on the body to move than a wide, open space. If space is a concern, buy tents and tunnels that can be folded up and stored in small spaces, like this package of 2 pop-up tents and 2 pop-up tunnels or this set of one tent and one tunnel.

KIDOOZIE SUPER SKIPPER

Mom happened to find this toy in a small toy store on the clearance shelf in Wyoming. This was a great find and she says they use it every day at their house. The toy is placed on the ground and when turned on, the sticks spin and the kids jump over it again and again and again. We haven’t seen this exact toy again, but found this similar KidSource Musical Hop Skipper on Amazon.

AMERICAN EDUCATIONAL PRODUCTS’ GONGE CAROUSEL

Spinning is intense vestibular (movement) input and is great for children who have a hard time keeping their bodies still. Spinning will meet movement needs quicker than back and forth movement. This family used an old office chair to spin until little baby brother’s arrival and they had to replace their desk and office chair for a crib. Now they use this fun Gonge Carousel! The Gonge Carousel spins easily without a constant push. Its uneven mounting causes spinning with the body weight of even small children. It’s also low enough to the ground that a child can stop quickly by putting their foot down. If you have a small home and a child who loves spinning, you need this!

POOL NOODLE SWORDS

A couple of years ago, I happened to see these pool noodle swords at a farmers’ market in North Logan, Utah made from PVC pipe, pool noodles and duct tape. They were a great price, so I also bought some larger batons (think ninja warrior equipment) for my own older kids at the same time (and they STILL love them). These pool noodle swords have proven to be perfect for this family to help regulate their sensory systems. The pool noodle is soft enough to not cause injury. The design with pool noodles on both sides seems to keep them from falling apart after almost 2 years of play. Visit Kid’s Armory Facebook page for contact info if you’d like to try these fun pool noodle swords and batons also. (In case Utah is too far away, I found this package of 4 pool noodle swords on Amazon. I’ve not used them, but wanted to give a link to find something similar.)

WEIGHTED PILLOWS AND BLANKETS

Weighted pillows and blankets are great way to help children to settle and calm for a midday nap or after a long day of play. My favorite local Utah company, Comfort Weighted Blankets, is where I usually recommend buying weighted blankets. (Not only do I like to support local companies, but I’ve found that buying from local companies can decrease the shipping cost on weighted items.) You can also find other companies or you can make your own. Here is a link to a child’s weighted blanket from InYard on Amazon. This family loves Minky Couture blankets, also a favorite local Utah company. These aren’t as heavy as weighted blankets, but use a super soft material that is quite heavy. Because this family has so many, they usually pile several minkies on top of their kids for deep pressure, especially when it’s time to calm and settle.

This little guy has a very favorite old throw pillow and loves to chew on the corner of it. Mom decided to make it into a weighted pillow to help him calm at night with deep pressure. She sewed pockets of rice into old fabric, unstitched the side seam of the pillow, put the rice pockets inside and then stitched it back up. It was easy for even a mom who claims she doesn’t sew. He uses it every night and asks for it when he needs to calm down as he sets it on his lap and chews on the corner. You can always add weight into pillows, blankets or stuffed animals on your own with rice, rocks, or plastic pellet stuffing, etc.

EASY OR NO-EQUIPMENT-NEEDED ACTIVITIES

DANCE PARTIES : Only music needed to get your dance moves on!

BALLOON TOSS: Blow up a balloon and try to keep it in the air! (Easy activity for kids to do while parents are occupied.)

CLIMB, JUMP, CRASH: Jump from the couch, stairs or beds into blankets, pillows, cushions, bean bags or stuffed animals. You can always buy a crash pad or make a crash pad, but a pile of blankets, pillows and stuffed animals on the floor to crash works well also. Your children will incorporate more intensity on their own if they need it with somersaults, flips, etc. (Bunk beds are the preferred jumping spot in this house.)

WRESTLING: A great way to keep kids and adults active! (P.S. Dads and uncles are wrestling all-stars!)

TWISTER: A classic game that can be fun for all ages!

Please share if you have great equipment and activities you use to meet your children’s sensory needs and keep them active in your home!

*Be sure to follow all product safety recommendations. Always supervise your children to help them stay safe with all equipment and activities.

*I am part of the Amazon Associates Program. If you choose to buy any of these products from Amazon, I’d love for you to purchase them through the links on my website to help support the work I do with Yums Theraplay! Thank you!

Fidgets in the Classroom: Why? What? How?

By Courtney Bills and Tera Robinson

We are right in the middle of the fidget spinner craze! The debates and rants have died down a bit because school is out for summer and no one has a problem if children are paying more attention to their fidget spinner than they are to their screens. Or the fidget spinners are inside while the kids are swimming, riding bikes and playing at the park. But… School starts soon and the discussion will surely fire back up! Hopefully, this post will help give some thought and good ideas to implement and help calm the craze, especially in our classrooms.

This time, I’ve teamed up with an amazing elementary teacher with 15 years of experience in classrooms, Courtney Bills. She has used fidgets in her classroom and gets everyday practice to implement sensory strategies into her teaching as she works with students, teachers and her own children who have sensory processing difficulties. We’ve collaborated together to help students and teachers for several years and she has some great ideas to successfully implement fidgets in classrooms. Courtney is going to share HOW she implements fidgets into her classroom at the end of this article.

*This post contains Amazon affiliate links as a convenient way to find products and tools recommended.

VIDEO: See Tera talk about fidgets in the classroom on FOX 13 The Place here.

WHY USE FIDGETS IN THE CLASSROOM? (by Tera)

A fidget is one of many tools that helps students self-regulate their attention, behavior and learning. Fidget spinner marketers have done a fabulous job in gaining the attention of the general public about something people have been doing for ages and that occupational therapists have been recommending for decades! You’ve already seen fidgets in many forms, even before the invention of the fidget spinner! Twirling hair, tapping fingers, bouncing knees, clicking pens, doodling…

Fidgets can help a person who is having difficulty paying attention, holding still, or behaving appropriately to seek out movement (vestibular), muscle (proprioceptive) and touch (tactile) sensory input that will keep them alert, attentive and maintain appropriate interactions during important daily activities. For students in a classroom, appropriate daily activities would include sitting still, paying attention, listening to the teacher, following directions, staying on task, completing work assignments and participating appropriately in classroom activities with others nearby.

Maybe you know a student or two or three… who may struggle with some of these appropriate classroom behaviors. Students with the following behaviors would benefit from using a fidget:

difficulty paying attention, listening and following directions
difficulty maintaining alertness (may exhibit “dazed” looks)
difficulty holding still or staying in his/her seat
difficulty keeping hands to her/himself and staying in his/her own space

WHAT FIDGETS WORK IN THE CLASSROOM? (by Tera)

The key to a successful classroom fidget is that it that works as a tool, not a toy. Each student will respond differently to different fidgets. I’ve seen a variety of fidgets work very successfully in classrooms, including simple fidget spinners for a student or two and fidget cubes for a few more, but the key is still that it is used as a tool, NOT a toy. Students have many other classroom tools such as pencils, crayons, scissors, paper, desks, chairs, books, computers, iPads… Teachers teach and maintain guidelines about appropriately using these classroom tools and not allowing them to become toys. (A few examples: A pencil is for writing, not sword fighting. Scissors are for cutting paper, not hair.) Teachers should also teach and maintain guidelines for classroom fidget tools. A successful fidget tool will not be the focus of a student’s attention, but will be used in the background with the focus of attention being given to the instruction, activities and learning in the classroom. Students should be able to answer questions, participate appropriately and not disturb others in the learning taking place while using the fidget. One reminder is that novelty will always create excitement, but once it is consistently used in the classroom, the excitement wears off. So if fidgets are used consistently in the classroom, they will become old news to many students and the ones who need them will keep coming back for them.

I really love this video that explains and gives guidelines on how to use fidgets in the classroom as a tool and not a toy: Long Story Shorts – Fidgets. Teachers and parents, show this to your students so they can learn how to use a fidget effectively to help them learn!

There are a few practical considerations to take into account when choosing fidgets for the classroom:

Price is important in a full classroom of young students. Expect that fidgets will be lost and need to be replaced, so I try to only buy fidgets that are about $3 or less.
The ability to use hands for learning activities is another important factor. Fidgets requiring two hands are fine for listening and discussion, but if a student is writing, at least one hand should be free to use a pencil. You can add a clip to tie to belt loops or a pencil topper fidget to avoid dropping or losing the fidget.
Simple and plain is best for classroom fidgets. Remember that fidgets should NOT be the focus of a student’s attention, so entertaining factors, such as stress balls with eyes that pop out when squeezing or bright, flashing lights or any noisy fidget, should be avoided in the classroom.

Several of my awesome teacher friends have helped me create a list of their most successful fidgets of the many that I’ve recommended in their classrooms over the past few years.

Nut & Bolt Pencil Toppers

Coil Bracelets

Scrubber Sponges

Yarn

Sticky Back Velcro Tape

HOW CAN FIDGETS BE USED SUCCESSFULLY IN THE CLASSROOM? (by Courtney)

Although many children can be taught in a traditional classroom without modifications, many children will find greater success with simple classroom adjustments. I have found that providing opportunities for children to discover their personal sensory needs enhances their learning, their motivation to learn, and their engagement in instruction.

I have learned a few things over the years in using fidgets and other sensory strategies in my classroom: (Although this article is specific for fidgets, all points in this section can be applied to any sensory strategy, such as seating options and brain breaks, used in the classroom.)

All fidgets should be taught with procedures and purpose just like turning in an assignment, sharpening pencils or lining up. You can eliminate almost all misuse of fidgets with proper training and procedures.
Provide more fidgets than children. Only a handful of children will “need” a fidget during carpet time, but if all children have the option, no one feels different or singled out.
Don’t use fidgets as a punishment for not being able to sit still or poor behavior.
Don’t take away fidgets for not following directions, using fidgets incorrectly, or not sitting still. Don’t misinterpret the fidget to be the cause of poor behavior, but lack of training and understanding the proper use of fidgets.
Most importantly, help children self-regulate and recognize when and if a particular fidget is helping him/her engage in the learning.

To help students learn how to self-regulate by using fidgets, ask questions such as:

How did having this fidget help you participate during carpet time?
Why did you choose to use this fidget to do your assignment today? Did it help you or distract you?
What fidget could you try next time that may help you stay focused?
I noticed that this fidget seemed to help you get your work done. How did it make you feel inside? Why do you think it helped you?

Fidgets are one of many sensory strategies that we use to support student success at school. Ask your occupational therapist for recommendations to meet the specific needs of your individual child or student. You may also be interested in learning about the importance of full recesses and seating options for sensory strategies to be used in combination with fidgets at school.

Every Minute of Every Recess for Every Student!

Classroom Seating Options for Students Who Struggle Sitting Still

Courtney Bills is a wife and mom of three awesome kids with their own individual sensory needs. She has taught in elementary classrooms for many years and is now a National Educational Consultant, with a focus on literacy instruction through C & B Reading, LLC. She works locally in Utah to help integrate an inclusion model for all students by providing necessary accommodations in the classroom for engagement and success of all learners.

Anxiety Success Story: Jackson The Weatherman

In the spring and fall of 2016, northern Utah experienced two severe windstorms, including a few areas of tornados. The winds were scary and destructive, destroying big, strong trees, trampolines, roofs, and full houses.

Jackson was a 3rd grade student during the first windstorm and a new 4th grader for the second. He experienced the scary reality of these windstorms firsthand and couldn’t forget the fear. Jackson who also has Autism and has a tendency to become obsessed and anxious with certain topics, began to talk and worry nonstop about the weather and if the next windstorm was on its way. He was scared to leave the house and so worried about the weather that he couldn’t think about anything else. One day, he even called 911 to come to his house without his parents’ knowledge, in hopes that a police officer should be able change the bad weather.

His good parents did all they could to calm his fears and anxieties with logic, reassurance, love, prayers and special blessings, but his worries and obsession continued. In 4th grade, his fears intensified, especially as his teacher began the 4th grade weather unit. His parents took him to a counselor who helped and gave his parents ideas, such as limiting the amount of times they could look up the weather or talk about the weather as he earned rewards for discussing the weather less and less. In the fall of his 4th grade year, Jackson’s parents, teachers and principal brainstormed an idea. Jackson could be the school weatherman. He could research and give a weather forecast on the announcements each day for the entire school.

So often, parents, teachers and other adults immediately try to calm children’s fears and anxieties with statements such as, “Don’t worry.” Our focus is on telling a child with anxiety what NOT to do. But oftentimes, adults forget to tell or find something that an anxious child CAN do with their anxious energy. Jackson’s story is a perfect example of empowering an anxious child with what he CAN do!

Jackson thrived as the school weatherman! He took his new job seriously and did a fabulous job! Teachers and students throughout the school looked forward to his daily weather report on the announcements. His parents were relieved that this successful partnership with his school, along with the other strategies they had continued, had eased his anxiety about the weather at home and at school.

In December 2016, after a couple months of being the school weatherman, Jackson came up with an idea all on his own. He decided he should write a letter to share with other schools about the importance of having a school weatherman. He wrote the letter and sent it to all the elementary schools in his school district. He felt so successful with his school weatherman job that he wanted to others to feel the same success! Below are some excerpts of his letter:

“Hi there, school principal, I’m a fourth grader [and] I’m the school’s weatherman. Do you have a weatherman too? If you don’t, you should get one. I’m going to tell you what you should do if you get your school’s weatherman (if you want to, that is)… If any of the kids… want to, they can tell the teacher… You might need someone who knows a lot about clouds and what the weather is going to be today… So, in the morning, have your weatherman ready to tell the weather for the day. Here’s the things he or she need to say. How it’s going to be over the next few hours, how it’s going to be tomorrow, and the high and the low. Well, there’s the stuff you need. I really hope you get one, because since I’m my school’s weatherman, I wanted other schools to have one too… P.S. I became the weatherman because I wanted to and it’s not a punishment.”After Jackson’s mom endearlingly shared his letter on Instagram to her friends, Utah’s KSL TV station ended up seeing it. KSL’s weatherman, Grant Weyman, highlighted Jackson in a their “High Five” segment. They surprised Jackson with a visit to his school and then invited him to be an honorary weatherman on KSL. You can see their visit to Jackson’s school here.

Funny side note that Jackson’s mom shared with me… Jackson really hates the sound of his own voice on camera. He loves watching the KSL videos, but he has never watched the videos with any sound.

Jackson is pretty proud of his weatherman super star status. And what is even better is that he goes about his days at home, school and in the community with calm confidence in any weather. What a great success story about empowering an anxious child with something they CAN do! Nice work Jackson and all his supporters! I hope this success story might help another child’s parents, teachers and other supporters to brainstorm what their anxious child CAN do!

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

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!