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Raising a Child on the Autism Spectrum

February 10, 2021

Follow us on our journey as parents to a child on the Autism Spectrum. See what's helped us in our first year at www.lifeonredoak.com

In October of 2019 we had our three year old evaluated and eventually diagnosed with Autism Spectrum Disorder. It was one of the most challenging years in my experience as a mom because it hit me in a multitude of ways. The “threes” are known to be a tough age and we had our fair shake of outbursts and tantrums, not knowing how to discipline him, reach him, or even understand him. It stretched us as a family and when all hope was seemingly lost, his diagnosis became a source of support and a gateway to understanding what his needs are.

…it’s not about the diagnosis, it’s about having an understanding of what’s going on with your child. 

Leslie Hayden (pediatric physical therapist & mother of a child on the spectrum)

Further Reading: A Story of Raising and Working with Children with Autism

Looking back on that early year since his diagnosis I am so proud of Greyson’s hard work that has made his progress so tangible and rewarding. He continues to make strides and my heart leaps when I see him beginning to connect the dots on his own.

Today I’m sharing not only a look back, but a reflection on where we are today and the exciting future this year holds for us as a family.

Early Intervention

One of the biggest reasons, in my opinion, Greyson has had the opportunity to make the progress he has is due to early intervention. For any parent with a child with a neurological disorder like ASD, early intervention is key. Once we embarked on the journey of having him evaluated we began to follow the breadcrumbs that eventually lead us to the people and organizations who could help him (and us as his parents) navigate these new and uncharted waters.

Our Early Steps:

  • discussions with our pediatrician lead us to his behavior either being caused by ADHD or ASD.
  • we had him evaluated by our local school district’s Special Education Department where they recommended him as having Autism Spectrum Disorder (ASD). (Note: school districts do not provide medical evaluations).
  • from there we established an IEP (Individualized Education Plan) and enrolled him in a public SpEd preschool near our home where he would learn in a specialized environment and begin receiving speech and OT services – as outlined in his IEP.
  • we then had him medically evaluated by a child psychologist for ASD so we could begin looking for services such as ABA (which requires a medical diagnosis). She came back having evaluated him having high intelligence and therefore on the high functioning end of the Autism Spectrum.
  • we took this medical diagnosis and submitted it for services for ABA therapy in our home.

* Covid did impact the types of services we could receive. In-home sessions were the only option whereas ABA typically provides the options for in-home, at-school, and in-facility therapy sessions with other children.

These steps were emotional ones to take and often had us yo-yoing our feelings about Greyson. My husband and I had bouts of frustration, guilt, sadness, and anger over what it meant for our son to be on the spectrum. I also went through these motions of guilt, frustration, and hope. However, the steps we took allowed us to process all of these emotions with the help and support of professionals as well as friendly interactions with fellow parents who have experienced something similar.

Where we are a year later

Follow us on our journey as parents to a child on the Autism Spectrum. See what's helped us in our first year at www.lifeonredoak.com

Greyson absolutely loved his new preschool where he attended and as his parents we were excited to see him so engaged again. School had been a source of anxiety for us the previous year – as every preschool we tried always gave us the same feedback: that Grey was struggling to fit in and that it may not be a good fit due to his behavior. It was reassuring that he was being accepted and learning alongside his peers who were were facing similar learning and social challenges.

2020 and beyond

Then, 2020 happened. Covid hit and he was sent home along with every child across the nation to continue on a virtual learning platform.

I adore his teaching team for the efforts they continually put in for him and his classmates because virtual learning is hard – especially for kids with special needs. Although it was difficult to balance this new normal, Grey continued to do his best. It was a struggle some days whereas others he was happy to participate. We decided that since he wasn’t receiving his speech and OT services through the school we would push forward with ABA therapy in our home.

Applied Behavioral Analysis (ABA)

Behavior analysis is a scientifically validated approach to understanding behavior and how it is affected by the environment.

Autism Speaks

ABA has had one of the biggest impacts on Greyson (and us!) within his first year since being diagnosed because everyday he worked with a therapist who focused on a variety of behavioral and life skill goals. With our newfound time at home (thanks, Covid) he was able to receive 2 hours of services every day where he worked on things like: eye contact, accepting no, developing self-regulation skills, and more. Furthermore, us parents received some training to help us best meet his needs as well as support and apply what he was learning during his therapy sessions.

Through ABA we, along with Greyson, learned more about the cause (antecedent) of his tantrums and how to best respond (consequences). We learned about what triggers him, how to get ahead of those triggers, and what to do as a response if he’s already triggered. Such mind-blowing stuff! We also learned the importance of following through on our consequences, even if it causes a slight inconvenience to us.

Another helpful nugget of information we received was understanding his functions of behavior.

Functions of Behavior

  • sensory: provides stimulation input to the brain
  • escape: removes unpreferred activities, people, interactions or situations
  • attention: provides access or awareness to/away from people or interactions
  • tangible: provides access to preferred person/people or items

Just this alone has helped us understand the cause of some of Greyson’s behavior (good or bad) and be able to best meet his need in that moment (or have a consequence that best matches the function).

Punishment vs Consequence

function (cause) + behavior (outward action) = consequence (the model to teach proper behavior)

We also learned that punishments don’t help teach a child about proper behavior. Discipline should be a learning process with meaningful actions that help a child understand their behavior and guide them to making better choices when faced with a similar trigger. Consequences on the other hand do just that – they teach – and are followed up with a short discussion about what happened, why, and what should happen next time.

Greyson’s tantrums and outburst have all but disappeared (with an occasional drop to the floor crying bit), which tells me some of what we’re implementing is working.

Greyson’s Gains

Follow us on our journey as parents to a child on the Autism Spectrum. See what's helped us in our first year at www.lifeonredoak.com

Although Covid was a huge setback for Grey, he adapted as best he could under these new circumstances. With that being said, some of the gains we’ve really taken notice of this last year have been:

Social

  • better eye contact when interacting with others
  • a desire to play and communicate with others – especially kids
  • a MAJOR improvement in his speech and ability to communicate in complete sentences
  • others can begin to understand him
  • learning to use his words when frustrated by interactions with other kids (i.e. sharing toys, imaginative play, etc.)

Behavioral

  • self-regulation (i.e. identifying emotions, appropriate responses…)
  • he’s now telling us he “needs a minute” or “I need a break” when something becomes overwhelming for him and goes to another room to calm down!
  • his ability to transition from one activity to the next (with the use of timers and a heads up about the transition)
  • learning to use his words to communicate when he’s sad, angry, or frustrated

Life Skills

  • can dress himself with little to no assistance (buttoning, zippering, etc.)
  • washing his hands, brushing his teeth, potty routines, etc. and understanding why hygiene is necessary
  • learning his address and our cell phone numbers

Safety

  • walking with us and not running ahead (impulse control)
  • continuing to learn appropriate personal space with others
  • asking permission to open the door
  • we were beginning social circles to help teach Greyson about social boundaries and relationships

Our Gains as Parents

Follow us on our journey as parents to a child on the Autism Spectrum. See what's helped us in our first year at www.lifeonredoak.com

Greyson isn’t the only one with goals and measurable progress. As his parents we strive to do our best to learn alongside him and do what we can to meet him where he needs us. As he matures and those needs change, we’ve been equipped to best meet them – knowing there’s still so much to learn.

Here are a few ways we’ve made gains (and continuously work on…) this last year:

  • always learning and being open to new approaches to parenting
  • communicating as spouses about the days’ struggles with Grey
  • learning to tag-team as parents as a means of our own self-regulation
  • communicating with Grey about our feelings (i.e. being honest about feeling sad, frustrated, or even happy) – we don’t need to pretend we’re happy all the time!
  • providing ourselves with extra time for transitions
  • awareness of what could be potential triggers for Grey in public settings and having a game-plan for when plans change spontaneously

…and here’s to another great year ahead of us!

Follow us on our journey as parents to a child on the Autism Spectrum. See what's helped us in our first year at www.lifeonredoak.com

Are you a parent or teacher of a child(ren) with ASD? What have you found to be the most helpful in your journey?

That Moment You Realize Your Child May Have Autism

October 7, 2019

Affiliate links may be used in this post. You can read my full disclosure here.

I can’t lie. This past year has been one for the books with Greyson.

It’s been highly rewarding but it also made me question the kind of parent and mom I was. It was a year filled with tears – some happy and others not quite as much. There was frustration and anger mixed in there, too, and writing this today makes me feel incredibly guilty.

How dare I admit that as a mom I don’t seemingly have it all together.

Well, yeah, it’s because I don’t.

Sure, Greyson turned three this year and with any newfound three year old there comes a new territory of parenting that includes: the frequent tantrum, the beginnings of potty training, and the overall preparedness for preschool. However, in the midst of all of this my husband and I have only recently found out that our son falls on the Autism Spectrum Disorder (ASD).

Although this news should have been devastating, for us it’s been a source of relief.

[ASD] …a condition that enhances who he is.

A relief to know that what Grey has been experiencing (and us as his parents) wasn’t due to just a behavior problem, but rather a condition that enhances who he is. I love his quirky and bright personality and therefore I wouldn’t change a thing. If anything, it’s changed my outlook on parenthood and Grey is teaching me to adapt my mindset and in a way, be a better person and mom.

However, looking back over the last year there was a road that lead us to this place.

Early Flags

Since Grey had always been in school we, and his teachers, had begun to notice an increase in problematic behaviors. Some caused by very logical reasons but others were either overlooked or easily written off as being a “boy” or a “typical three year old.” Other behaviors made us question whether or not Grey may have certain challenges, but it was never anything that was a glaring problem. To us, he was a very happy and healthy growing little boy.

That is until we had to come face-to-face with the realization that there was something amiss and we were having increasing, and sometimes volatile, outbursts and tantrums at home.

Some of these signs and behaviors include:

Difficulty with transitions

‘Transitions’ is kind of a buzz word in our home as of late. It’s a constant talking point when it comes to Grey and the feedback we get from his teachers. He noticeably dislikes any kind of transition from one activity to the next and any kind of redirection sends him into a tantrum. We always thought it was just him being difficult, but is one of the leading signs of ASD he has.

Transition is the end of certainty and the beginning of uncertainty.

After our first IEP meeting where we received feedback from his evaluation with the school district, I asked the question:

why are transitions are so hard for him and other children with ASD?

It was simply explained to me that transitions in and of themselves are the end of certainty and children on the spectrum rely on it to make sense of the world around them. That was my light bulb moment and has really helped me understand him that much more.

Tip: during transitions use “if, then” statements with them to help provide them with a level of certainty about the next activity.

Example: “If you clean up your toys, then you can have your snack.” By using these kinds of statements Grey has shown so much improvement at home!

A delay in speech and communication

I distinctly remember having a conversation with my sister over the phone and got to speak with my nephews. One of them is only 10 days older than Grey and I was impressed with how much he could communicate and speak – this also had me come to the realization that Grey could have a delay and was worth looking into.

This was a big sign for us as parents because we began to realize that a lot of his tantrums were caused by his inability to effectively communicate his thoughts or feelings.

We’ve noticed this year in particular:

  • he has a wide range of vocabulary, but doesn’t know how to string his words together in a meaningful way.
  • others (i.e. anyone that isn’t us) can’t understand him or what he’s trying to convey.
  • not very conversational, doesn’t respond to open-ended questions.
  • mimics, or repeats, a lot (echolalia).
  • speaks in only 3-4 word sentences on his own.
  • intense tantrums that can last for 40 mins to an hour, throws toys, can be physically harmful.

During tantrums he would scream, throw things, and hit – oftentimes it would last for an upwards of 45 minutes. It left us exhausted, upset, and confused because his response never quite fit the problem. No amount of discipline seemed to work and for a few months everything felt so helpless. However, with his evaluation and finally having an understanding of how he processes the world around him has greatly affected our ability to calm him and has adjusted our parenting.

Sensory Sensitivity

Greyson within the past year has become particularly sensitive. These sensitivities are highly common in children with ASD and many we overlooked. Some of his sensitivities include:

  • avoids eye contact
  • lack of interest in peer relationships and play
  • stands too close to objects or other people (including strangers)
  • covers ears at sounds such as loud talking or the vacuum cleaner
  • difficulty focusing when multiple sources of sound are present
  • under-reacts to pain, high pain tolerance
  • in certain circumstances sensitive to being wet (i.e. dislikes paint at school)
  • rigid with his food preferences, only eats in a particular order and must finish before moving onto other foods, foods must be separate

Of course, when reading any list of “signs” as a parent Greyson seemed to fit all or none of them. It had me feeling all over the place, but now that we have begun the process and are supported we have a clearer idea of how to classify him and begin services.

Motherhood is about raising and celebrating the child you have, not the child you thought you would have.

Joan Ryan

Helpful resources

Because my husband and I are brand new to this Autism spectrum world, I’ve begun to research and learn about best practices and helpful tips and tricks to use with Greyson. Here’s what I’ve found helpful so far:

  • How to Discipline an Autistic Child
  • Using Social Stories to help build and reinforce skills.
  • Weighted blankets have been very helpful in getting Greyson to sleep!

Next steps…

If you believe your child may need an evaluation for ASD or other common neurological developmental disorders, consider the steps we’ve begun to take for Greyson.

  • speak with your child’s teacher and get any feedback about behavior in writing.
  • take your concerns and written feedback from teachers to your pediatrician where they can make referrals for therapies or further diagnostic evaluations.
  • get in touch with your local public school district and see about an evaluation with their special education department.
  • work in tandem with your school district to create an IEP and receive further resources in your city.
  • refer to Autism Speaks or other local Autism support groups in your city.

I do have to say that by no means am I qualified to give any kind of medical advice. I’m simply a parent who has become frustrated with the process, inundated with all kinds of information, and have felt isolated in our struggles. However, I’m thankful for platforms like this one to share my experiences as a parent with a child with ASD in hopes it reaches someone who may need to feel supported in the way we’ve needed to this year.

Minimalist Travel with a Toddler on the Spectrum

October 5, 2019

“When you travel with children you are giving them something that can never be taken away…experience, exposure and a way of life.”

Pamela T. Chandler

We’ve been taking Greyson with us everywhere ever since he was an infant – mainly because we’re raising him without a village, but it is also our desire as parents to educate and teach him about places other than here at home in California.

I’m grateful that we’ve had opportunities to travel across the U.S. and even Europe as a family of three. Travel has always been a priority of ours, not simply for our own gratification but for the natural education travel provides. Having Greyson along for the ride has been a fortunate experience we’ve been able to provide for ourselves and him.

No matter where you we, traveling with a child can bring up some tricky and frustrating challenges – some seen and many unforeseen. From navigating airports, having everything you’ll need for the flight itself, to living out of a suitcase in whatever destination – it can all be so overwhelming. But thankfully it doesn’t have to be! With a little bit of research and investing in the right travel products (and a positive and flexible attitude) traveling with our child has been one of the best experiences.

Traveling with a child with ASD

ASD refers to Autism Spectrum Disorder and only recently have we found that Greyson falls on the spectrum. Although he is highly functional, there are many things we are beginning to learn about ASD and how it impacts him during travel. Equipped with this new knowledge and awareness, we are more capable of anticipating and adjust our own preparedness as parents.

A little background info…

The biggest trigger for Grey in life and at school has been transitions. Recently I’ve been enlightened by one of his specialists with the understanding that transition is the end of certainty and the beginning of uncertainty. So, as much as we can to make travel more certain for Grey, the better his ability to adapt to new routines while we’re away from home.

“Transition is the end of certainty and the beginning of uncertainty.”

Since Grey has been flying for a while, he’s come to learn the process fairly well. That doesn’t mean he’s immune to the common tantrum, refusing to sit in his stroller, or listen to any direction we give him…we’ve definitely been those parents with that kid. However, we never let that stop us from exploring the world and that kind of persistence, and learning a few tips along the way, has really paid off. Here’s how we travel (+ a dog!) and a few tips of our own for minimalist travel with a toddler on the spectrum.

Travel Rules of Thumb:

Don’t check bags. Period.

I know, I know. It took me a long time to grow to love this ‘no checked bag’ lifestyle thanks to my husband – but I’m so glad I did and I can’t look back.

By not checking a bag we are:

  • saving money on checked bag fees.
  • saving time waiting at a baggage claim carousel.
  • saving my sanity from lost or late baggage.
  • being more mindful and strategic with my packing.
TSA Pre-check is a gift from the travel gods.

TSA pre-check was a foreign term prior to visiting Europe, but knowing we would be traveling with Grey and to different countries we wanted to look into it. In retrospect, I’m so glad we did because the little extra we paid, we received back in the form of an effortless security check experience. Shorter lines, not having to remove everything, and saving time spent in security is worth every penny.

The Gear.
  • a diaper backpack.
    • Most airliners don’t charge you a carry-on fee if you’re flying with a child and using a diaper bag.
    • Invest in a durable diaper backpack instead of tote-style bag (frees up your hands to manage the stroller or your child).
  • Carry-on luggage.
    • Don’t be silly and check a bag (see point made above). Find a carry-on that suits your style and needs and rethink how you pack. You can do it…I believe in you!
  • Collapsible Stroller.
    • We love our Summer Infant 3D Lite stroller and have been using it non-stop since our big trip to Europe almost 2 years ago. One of the best investments and we gate check it every time.
  • Travel car seat.
    • When we travel we rarely rent a car so we’re left with public transportation or good ‘ole Uber. For good reason, many Uber drivers wont accept us unless we have a seat for Grey. The Mifold booster is a perfect option for kids who are 4+ years old or 40 lbs or more. It simply folds out and adjusts the seat belts to a proper position.
      **please note to continue your own research about the safest travel options for you and your family.
  • iPad mini with cover + child headphones (bluetooth if you can).
    • The iPad mini is the perfect size to pack plus child headphones helps keep you from disturbing your seat neighbors or hearing Baby Shark for the entire 3-6 hour flight. We love this durable toddler cover, too!
    • Keep in mind that headphones can be sensitive to children with ASD, finding the right headset is key.
  • noise cancelling headphones
    • Greyson’s sensory processing has been quite sensitive for the last few months – especially with loud sounds. Airports (and travel in general) can be quite busy and therefore be cause to a lot of noise that can become overwhelming. We’re still training him on using them, but these headphones have been great!
The Stuff.
  • Make a capsule wardrobe for your trip.
    • Make your wardrobe work smarter, not harder. Capsule wardrobes are great for every-day, but especially important for traveling minimally.
  • Pack necessary items like loveys or blankets.
    • Grey has a weighted blanket we use for nap and bedtime. It’s been a great way to calm him or make him more comfortable. He also has his beloved George that we take on every trip.
  • Dr. Zarbee’s melatonin “sleepy” pills.
    • Don’t judge me, but we totally embrace the sleepy pills and give one to Grey about 30 minutes prior to boarding. They’re great for allowing him to sleep during our flight, which ensures he’s in a good mood when we land. It also helps him adjust to different time zones and keeps his naps on schedule.
  • Purell antibacterial wipes.
    • These wipes are perfect for being that parent when giving your seat area a good wipe-down.
    • They’re also great for wiping down the potty when taking your toddler to the bathroom. We always keep Purell wipes handy!
  • Snacks.
    • Packing your own snacks and pouches are very helpful when you have a hungry or upset child. Nothing cures a bad mood like snacks, so pack plenty of them.
  • Foldable travel potty.
    • When we first began potty training Grey I wanted to create a little travel kit for everyday errand trips. This potty made the cut and I have been so impressed with it! I love that it folds up and fits perfectly on most toilets. I just simply wipe everything down and we’re good to go!

Amazon affiliate links are used within this post. You can read my full disclosure here. Thank you for supporting my blog!

Linking up with Andrea for Friday Favorites.

What are some of your child travel essentials? Any tried and true tips you’re willing to share to fellow parents eager to travel?

Hi there and welcome to Red Oak! I'm a Virginia native making a life in Texas and answer the call to wife, mama, teacher, and small business owner.

My hope for this space is to inspire a life cultivated by simple living and the enjoyment of the little moments.

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