My 5-year-old son, C, and my 3-year-old daughter, Jo, have autism and sensory processing disorder. C struggles with vestibular input, oral aversion, language processing, and more. In addition to his delayed gastric emptying, SPD is one of the reasons behind his feeding tube (g-tube). Jo deals with anxiety, language processing, oral aversion, and more. Below, you’ll find recent posts I’ve written about our journey with autism and sensory processing disorder.
My autistic children deserve equal access to education and healthcare. I never thought I would need to say that, but the current political landscape suggests otherwise. What troubles me most is that caring for our children isn’t a political issue. It’s a common sense, common dignity, basic right to access type of issue.
My two children are on the autism spectrum. My eldest child has additional medical issues. The prospect that they may be denied healthcare based on their diagnoses angers and terrifies me. They have their entire lives ahead of them! The possibility that they might experience discrimination in school due to their autism diagnosis is unacceptable. It should be unacceptable to all of us. All children deserve access to education, regardless of sex, ethnicity, religion, orientation or disability.
I do not want the government in all aspects of my life, either; however, if the government does not protect children’s civil rights, then who will? The government exists to serve and protect. It functions as a vehicle to protect the least of us.
We don’t need to believe in big government to believe that all children deserve equal access.
Do we not all agree on the values of access to education and healthcare? I believe that every person has a right to healthcare. The socioeconomically advantaged do not deserve better healthcare than an underprivileged child or a middle-class adult. I believe that every child has a right to a free and public education. A physical, mental or learning disability should not disqualify a child from receiving that education, even if he or she may require modifications for accessibility.
The Affordable Care Act (ACA)
Could the ACA be better? Yes. Did the ACA make important progress? For the 20 million people who are now insured and for the unknown number of people with preexisting conditions that were denied access, charged discriminatory rates, or put into expensive high-risk pools, the ACA provided life-saving access to healthcare.
Why are we denying millions of people healthcare? Why are we taking away the right to access healthcare for individuals with disabilities?
We can work together to improve the ACA without dismantling the aspects that benefit millions of Americans.
When did we start dismissing the rights of those less fortunate? When did we stop working together for the common good? When did we stop listening and start name-calling?
Our children are depending on us. Even when we feel powerless, there is action we can take. Contact your elected representatives. Make your voice heard. The stakes are too high.
It can be daunting to pack for a resort vacation for your children with special needs. Our children have sensory processing disorder and autism. There are certain comforts from home that we simply can’t leave behind. We want to set them up for sensory success so that they are free to enjoy all the amazing activities that await them at the resort! Save the family some stress by packing these 5 sensory must-haves for your resort vacation:
When it gets too loud, headphones are important to have within reach. Jo is more sensitive to noise than C. She prefers to wear her headphones in loud places, like the family entertainment center. She can still hear and participate in the fun, but the extraneous noise is muffled.
Our children are uncomfortable with silence and prefer light noise at all times. White Noise can block any noise from the hallway when it’s time for bed and provides extra comfort for a restful night of sleep.
Deep pressure input can be calming for children with sensory sensitivities. Using a weighted blanket at night may help them sleep better and recover from the excitement of their day.
Fidget Toy, Chewy, or Lovey
Is your child attached to a certain object? Does she need a fidget toy or chewy to help her with anxiety? Bring it along! As much fun as your resort vacation will be, it’s also a new environment. Having a comfort item from home will provide consistency and familiarity for your child.
Phone or Tablet
If your child experiences sensory overload, quiet time on an electronic device may be a welcome respite. You can also put pictures from home on the device if they get homesick, or video chat with friends and family.
Set your family up for sensory success and you’ll be ready for an awesome vacation at a Kalahari Resort! Kalahari has locations in Wisconsin Dells, WI; Sandusky, OH; and Pocono Mountains, PA. In March 2017, Kalahari Resorts in the Poconos will be America’s Largest Indoor Waterpark with 220,000 square feet of attractions offering a large variety of family fun all under one roof.
Thrill-seekers will enjoy eight new water slides, including the Screaming Hyena with a trap-door start that drops into a near-vertical plunge at up to 25 mph! Over 500 new rooms bring the total available guest rooms to over 1,000. Find relaxation in the Spa Kalahari before exploring 30,000 new square feet in the family entertainment center – and a new virtual reality experience in The Arena! Three new dining options offer your family more choices for a satisfying meal.
Escape the winter dreariness with an adventurous vacation at this African-themed destination! Kalahari Resorts offer all the weekend getaway essentials – which one is the first on your list?
I recently shared that C thought he was on the naughty list due to autism-related behavior. Some thoughtful family members were moved to send him letters from Santa. The gesture moved me to tears as I anticipated how important these letters would be to C. As we opened and read each letter, he smiled with pride as he heard Santa’s praise for his good behavior, hard work and latest accomplishments. I think my son’s fears of the naughty list have been replaced with excitement and joy for Christmas morning.
I really don’t know what we would do without our loving tribe of family, friends and professionals. It truly takes a village to raise a child with special needs. I can’t imagine life without our village.
Our family rallies to give us hope whenever we’re running low. They provide experiences for our kids that are important to them, even if a little out of the ordinary. They give Hubster and me a break when we need to recharge. Receiving letters from Santa is just a small example of the extraordinary love we receive from our village throughout the year.
Thank you to each and every member of our village – whether you’re involved in our daily lives, pray for our family from afar, or engage in our journey here, we are deeply thankful for you.
You see your child work hard every day. You witness his exhaustion after long days of school and therapy. You pick up the pieces after meltdowns. You are there to comfort, encourage and lift him up again. You do everything you can to allay his fears, calm his anxieties and provide a supportive environment for him.
Maybe he even blends in with his peers most of the time. Maybe his teachers tell you he is setting an example for his peers in class and the special education teacher finds it challenging to set new goals for him. Maybe they tell you that if they didn’t know he has autism, they wouldn’t even suspect it.
But you know. You’re there for the behavior, the sleepless nights, the intense anxiety, and the therapy. When he can’t hold it together anymore, you are his safety net.
Concert day arrives and you’re filled with anxiety for him, because you know how anxious he is to be up there. You see him walk to the front of the room. Amidst a sea of smiling children, you watch your child squirm in discomfort and stare at the floor. You can see him wishing he could melt into the background and you feel his anxiety.
In this moment, there’s nothing you can do to calm him, so you watch and pray and hold your breath until it’s over. Tears well in your eyes as you feel your child’s discomfort. Maybe you wish things were easier for him. Your heart is filled with pride, because you know it’s difficult for him to stand in front of a group of people as loud voices sing around him. You watch other parents find the best position for a picture, take video, and return smiles to their beaming children. You’re frozen in your chair, filled with emotion for your child who labors every day so he is able to stand there with his class.
To the mom crying at the school concert, I see your heart and I understand.
My heart sank when my son first said it: “I don’t know if Santa will bring me any presents.” I told him that Santa brings presents to all girls and boys on his list. C replied, “I’m not good.”
My son thinks he’s on the naughty list. He struggles with physical and object aggression due to autism. Every day, I tell him how much he is loved. I praise him in as many ways as he allows. I recruit other loved ones to praise him, because he doesn’t like to hear it from me. I lift my son up in as many ways as I know how, and still he questions if he is good enough.
I hoped this was a one-time concern after a difficult day. Yet, every time we talk about Santa he brings it up. A five-year-old boy who is filled with life, a snarky sense of humor, a thirst for knowledge, and a love of cars thinks he is not good enough to be on Santa’s nice list.
If only you could hear my heart shatter. I’m sure it’s audible.
I am now on an even greater mission to amp up my boy’s self esteem. I was teaching the following three things to him before, but more fervently now:
Being good means trying our best
Every day is a new day to try our very best. We aim to do the right thing, love our people and spread kindness. No one is ever perfect all of the time.
We all make mistakes
Sometimes we have bad days. Sometimes we act before we think. Even when we try our best, sometimes we make mistakes.
Mommy and Daddy love you all the time
When they make mistakes. When they do awesome things. When they tell great jokes. When they yell. When they laugh. When they cry. We love them just the same, all the time, and no behavior can ever change that.
I am sad and concerned that he doubts his worth at such a young age. I’m also hopeful that addressing it while he is still young will help him grow into a confident, self-assured boy who believes in love, grace, kindness and putting forth his best effort. I want him to know how truly awesome he is – all the time.
This content is sponsored by Bounty. The thoughts and opinions below are entirely my own.
With two children on the autism spectrum, we are all about sensory play. We participate in so much sensory play that I’ve started to dream about ways to keep it fresh and exciting. I decided on themed sensory activities that incorporate beloved characters. I put up themed garland, covered the table to prepare for our messy sensory fun, sprinkled confetti, and dressed Jo in her Disney Frozen Olaf shirt. It was time for Disney Frozen Themed Sensory Play!
I brought out a tray of milk bottles and filled them with blueberry kefir. Bounty Prints Featuring Disney Frozen are a must-have for any Disney Frozen activity! These new Bounty Prints Featuring Disney Frozen come in Paper Towels and Quilted Napkins and are 2x more absorbent versus the leading ordinary brand. They’re the perfect Quicker Picker Upper to have on hand before you bring out the shaving cream!
That’s right – get that can of shaving cream ready for sensory play! I put a tablecloth on our table and placed vinyl placemats on top to aid in the cleanup process. I sprayed a pile of shaving cream on each child’s place mat and let them get to “work!” Does the shaving cream remind you of Arendelle’s snowy landscape?
My kids enjoyed using straws to blow the shaving cream around the place mat. Jo drew in the shaving cream with her straw, and C used some of his favorite cars to drive through the shaving cream. The great thing about this sensory play? The messier, the better!
It can be challenging to keep them interested in an organized activity, but both of my kids had a great time with this sensory play. The limited edition Bounty Prints Featuring Disney Frozen even excited them enough to help me clean up the mess! Which toys will you use in your Disney Frozen Themed Sensory Play?