Posted in Autism, Benji's Story, Parenting Ideas, Special Needs, therapy

Parenting your Autistic Child: 6 Ways to become a Meltdown Prepper

A friend asked me, tongue in cheek, if I would write a 600 part series with advice about parenting her SPD/ASD daughter. I gulped and laughed. I wish I had that series myself. I am NOT an Autistic Parenting Expert by any stretch of the imagination. I am new to this journey and am figuring it out as I go along.
However, I want to help and encourage others in their parenting journeys so I told my friend that I had three ideas for posts about techniques that work for us…sometimes. 😀

Have you seen those shows about people who prep for DoomsDay/Zombie Apocalypse? They self-identify as “Preppers.” These people stockpile underground bunkers with food, ammo, and daily necessities to help them survive, what they believe to be, impending Doom. I watch these preppers in fascination…as I roll my eyes..

However, as much as my eyes are permanently stuck in the back of my head at the idea of being a “prepper,” I’ve realized that preparing for worst case scenarios is something that I do on a daily basis as I raise my 8 year old Autistic son. I come to realize that prepping is essential for my son’s daily well-being (and our family’s well-being too!).

Because many ASD people build their reality around personal experiences, encountering new experiences can very scary, can cause anxiety and panic, ultimately leading to a meltdown.
Sensory overload to daily events (crowded playgrounds, mom using the vacuum or hand mixer, new clothes, etc) can also cause meltdowns.
Feeling secure and safe is important to all people, but because the world is a scary and unpredictable place to many autistic people, preparing your child for daily encounters (even if you do the same routine every day) is important for emotional and physical security.

The techniques listed below are things that we have learned from our therapist, as well as practices that I have learned and applied through trial and error. We have had more success than failure with these techniques but they don’t work (ie. prevent a meltdown) all the time.

6 ways to become a Meltdown Prepper

1. Prepare for every situation 

With our son, we have learned that if we talk through scenarios that seem threatening to him (like a doctor’s check up) or situations that may trigger a meltdown (like a play date) before they happen, it helps him “experience” the situation, therefore making it less scary.

Church has been a huge struggle for us and I was especially dreading the Easter Service  because there is lots of music (sensory trigger for my son) and it is a family service (no Sunday School). I wanted to avoid a meltdown so here are some ways we prepped for this stressful situation:
-We talked about the Easter service a few weeks to prepare him for the new format
-We spent an entire counseling session with his therapist talking about ways to cope
-On the advice of his counselor, we role-played potential tricky situations and how Benji could respond if he felt overwhelmed or anxious (Me: What do you think you could do if you feel anxious or upset during the service? Benji: I can ask you to roll my back with the yellow train.)

FullSizeRender
That yellow train is a Church Essential. It lives in my purse, along with the white Therapeutic Brush in this picture.

To me, the prep for Easter felt excessive (and Benji even started saying, “Mooom! I know!“) but it paid off.

We had a very smooth and happy Easter Sunday. Benji asked for what he needed; we were able to comfort and help him; and, best of all, no meltdowns! To quote Benji, “This was the best day EVER!”

2. Anticipate Triggers

For us, a key to avoiding meltdowns is to to anticipate the changes that could cause anxiety in our son. Obviously, preparing for every worse case scenario is impossible (plus, who knows why kids throw fits sometimes!) but if you see a pattern in your child’s life, try to  pinpoint the trigger; then address the trigger before it happens so you can prevent the meltdown.

For example, my son is very sensitive to hunger. He gets a fruit or veggie mid-afternoon snack at school but sometimes he comes home, starts homework, and dissolves into a “mood.”

While several factors may be in play, the first question I ask is, “did you eat your snack at school today?” If not, I feed that boy ASAP!

Taking care of his physical needs is essential to helping him regulate his emotions.

3. Practice “Calm Down” techniques when your child is calm

Have you ever tried to tell your child to “Calm down! take a deep breath!” when he is in the middle of a full-fledged fit? How did that work for you?
Yeah, me too. It doesn’t.
When kids are out of control, they lose the ability to cognitively calm themselves if the “Calm Down” habits are not established.

Our therapist encouraged us to practice “Calm Down” techniques when Benji is calm and happy. That way the technique is associated with the calm mood, not the meltdown. Also, practicing creates a habit-path so that the child can more easily reach the calm place during a stressful situation.

Some calm down techniques we’ve used include:
-Deep breaths (5 at most) (“Blow away your angry feelings!” or “Blow out the birthday candles!”)
-Squeezing a stress ball 5 times
-Placing your hands on your thighs and squeezing for 5 seconds, then relaxing for 5 seconds.
-Guided sensory imagery to a ‘Happy Place’ (close your eyes: what do you see/hear/smell/feel?). This exercise “resets” the emotional state.

We have had varying degrees of success with practicing “Calm Down” techniques. The habit seemed to work for little upsets but not for huge meltdowns. However, I think if I was more consistent in making my son practice, we would probably have better results.

4. Give transition warnings

Transitions are a huge meltdown trigger for my son, especially when he was preschool age. I had to start giving transition warnings for every activity:
“In 5 minutes we are going to stop watching TV and eat breakfast”
“In 15 minutes (then 10, then 5, then 1) we are going to leave the park”
“Right after this show is over, it’s time to go potty and take a nap. Do you understand?”

As he has gotten older, he hasn’t needed the transition warnings as much. However, when I forget to give a verbal transition warning, especially if he is doing something he enjoys, like playing the ipad or watching a movie, he gets very upset and it’s hard to “reset” him without great effort on my part.

Picture schedules have worked really well for us in the past too–that way your child can look at the schedule to see what is coming up next, therefore feeling more autonomous (and so you don’t feel like you are losing your mind by giving the constant transition warnings).

100_4792
A (blurry…sorry!) picture of our picture schedule from a few summers ago

5. Remove sensory triggers (or remove yourself/your child)

Sensory triggers can be baffling to someone who doesn’t have SPD. I finally realized that I can’t “logic” my child out of his sensory issues (::facepalm::); I just have to accept them, anticipate them, prepare for them, or remove them.

Benji’s pants have to have elastic in the waist. For a while, I tried to buy “slim” pants that still had the tight feel he craved.
It didn’t work. Thinking about the “pants meltdowns” we’ve had still makes my heart pound.

It isn’t worth the battle. He needs elastic pants? He gets elastic pants!

Same for food: If I’m serving applesauce to the rest of my kids, I just cut up an apple for Benji (or give him another type of fruit or veggie). Applesauce type foods are a no-go. (Thankfully, he does eat a wide variety of foods. Many ASD children do not).

There are some sensory issues you can control as a parent; there are others you cannot. If your child cannot cope with sensory input and he or she is starting to meltdown, the best thing to do is to remove your child from the situation, even if that means going to sit in the car with her while she holds a favorite toy or blanket until she calms down.

You can’t “tough” your way out of sensory issues, though you can prepare for challenges if avoidance is impossible (see 1 and 2 again).

6. Remember that a bad moment doesn’t mean you have a bad life.

Sometimes the prepping pays off and sometimes it doesn’t. You can prep, and anticipate, and prepare for weeks, days, hours, and minute by minute but you can’t prep the Autism out of your child.
Meldowns happen (or insert your word of choice here).
Sometimes you just have to ride it out, talk it out when it is over, hug your baby, and start over again when the storm subsides.

If you have a prepper mindset, it’s easy to see “DoomsDay” around every corner. It’s the same for meltdowns. I have experienced seasons in my life where my own anxiety of “when is my son going to meltdown next” was almost debilitating.
MeltdownPrepperI had to change.
For one, I started being more consistent in helping to avoid meltdowns.
Secondly, I had to start thinking long term. Prepping myself and my child is more than just preparing for the next meltdown. It’s really is about preparing my child to successfully navigate life in a healthy way.

Eventually, I want him to be able to anticipate life changes, transitions, sensory triggers, and autonomously utilize ways to calm down.

Until then though, I have to help him because he can’t help himself. He needs me to come along side him when his body, emotions, and world feel scary and out of control. I need to be his rock, his safe, secure place.
I’m his bunker.

Yep, I’ve become a Prepper.

Are you an ASD “Prepper”?
What helps you and your child navigate through challenging situations?
Share your story below!

I hope that my story can bring hope, healing, and happiness to you. TheBamBlog is trying to grow! Did this post encourage you or would it inspire someone you know?
If so, please share via your favorite social media! Thank you! 🙂

Posted in Autism, Benji's Story, Education, Special Needs, therapy, twins

Part 2: 10 Signs of High Functioning Autism that I missed

This is Part 2 of my three part series about the “10 signs of High Functioning Autism that I missed” in my son. If you missed part 1, where I discuss sensory issues and motor skills, click here!

I’ve been thinking a lot lately about why I missed these signs with my son. The reality is, I had a version of “Autism” in my head, what I thought Autism looked like. I thought that children with Autism didn’t develop speech (no words by 2-3 years old), didn’t interact with the world around them, exhibited stimming behaviors such as rocking or hand-flapping, or they developed normally for a time and then lost speech and relationship skills suddenly, usually between the ages of 2-3.

All of these things do happen and can be seen in children with Autism, but not always. Benji didn’t exhibit any of these issues or qualities.

His signs were much more subtle, but they were still there. Looking back now, I can see them.

4. Communication Issues

Benji was never diagnosed with a speech delay but he probably should have been.  However, both my twins were slower to speak but I reasoned that this was due to their premature birth (36 weeks) and the fact that they were boys.

However, the older Benji got, the more I realized that his normal speech was not “normal. I wrote more about this topic in this post.

What I didn’t know then was that many children with Autism have trouble communicating, sometimes in their actual speech, but even more so in expressing their thoughts, emotions, and even sequencing their thoughts into patterns that make sense to the listener. My son struggles in these areas due to his Autism.

Speech therapy is an important intervention that Benji now receives.

scarterstudios M038
There are so many ways to communicate with your child. Look at this smile! What a happy Benji (3 years old).

One “right” thing I did when my boys were babies and toddlers was introduce them to sign language. They were obsessed with Signing Time DVDs and probably learned 100-150 signs. Signing really helped us with the communication issues I wasn’t even fully aware of at the time.

5. Won’t respond to verbal instructions

A few weeks ago, I unearthed a 30 second video of when my twins were 2. In the video I asked Micah, “What’s your name?”
“Micah!” he chirped happily.
“How old are you?”
“Two!”
I then turned the camera to Benji and asked him “What’s your name, little dude?”
He didn’t respond or look at me. I asked him over and over again, “What’s your name, little dude?”
Nothing. I laughed in the video and I remembered how I felt perplexed because I knew he could tell me his name. He had done it before.
I then asked, “How old are you?” and Benji suddenly looked at the camera and said, “Two!”
I remember being pleased, and asked him again, “What’s your name? Can you tell me your name?”
But again, he didn’t respond.

At the time, I though Benji was being silly or stubborn because he had answered these questions before. I just wanted to get his cute little voice on video.

But as I look back at this memory, his selective communication, his lack of understanding of one question vs. another, and his detachment from me and my efforts to communicate with him, I now see as evidence of his Autism.

Even now, at times, Benji struggles to understand directions, questions, and instructions. I often have to word things differently and encourage others to do the same, such as when we were at the eye doctor last week and the attendant asked him to “read the letters.” He was silent and I knew he didn’t understand (how could I “read” the letters? Those letters don’t make words!). So I asked, “Benji, can you name each letter on the screen?”

Struggling to interpret and then respond appropriately to the verbal world is a battle for many people on the spectrum.

6. Not “checking in” while playing

A few months ago, this video (What Autism looks like in toddlers) popped up on my facebook feed. One part that really suck out to me was when babies, playing near their mothers, would look back at their moms to “check in” as if to say, “Mommy? Do you see me? Are you still there?”
The mom would smile at her baby and the baby would smile back and go back to playing.

This is normal, typical development for babies and toddlers. They gain independence through crawling and walking but they still want to be connected to Mom and share experiences with her. “Checking in” through a glance, coo, or laugh during play is a way to share a personal connection.

As a baby and toddler, Benji never did this. We had a connection and a relationship but,  as I said yesterday, most of his awake time was spent wrestling with his brother or running at parks. When he was playing he was in his own “world” and he didn’t try to share his experiences with me or “check in” during his play time.

74ea3-100_4173
Benji may not have “checked in” with me when he was a baby but he has special relationships with his two little brothers. Their adoration for each other is mutual.

When I first saw this video, I wondered,  Is this “checking in” thing for real? I decided to observe my baby, Eli, who was about 9 months old at the time.

I watched him crawl away.
Hmm! Blocks! These look fun! He started to chew on one.
My phone rang and I answered it.
Eli turned toward the noise. Then he put the block to his own ear, smiling and babbling.
He glanced up and caught  my eye, and said “Dada!”
See, mommy? Look! I talk to daddy on the phone just like you.

And there it was: “Checking in” (plus pretending. See #7).

It brings me so much joy to see my baby interact with me and the world around him. But realizing that I didn’t have these precious moments with Benji hurts sometimes.

7. Not Pretending

Many people with Autism are concrete, black and white thinkers. Pretending, imagining,  or taking the perspective of another person are often very difficult concepts to grasp.

For example, in a recent therapy session, Benji’s therapist had to reword all her questions to him because they began with “Pretend you are–”
“I don’t do that,” he bluntly interrupted. “I don’t pretend.”

5f141-100_2906
This was the only time my boys wore these adorable pirate costumes my mom made for them. Playing dress up (pretending) was difficult at age 3.

And it’s true. He doesn’t pretend. A yellow block is always a yellow block. It will never be a banana or cheese for a stuffed mouse to nibble.

Pretending or imaginative play is part of normal development for neurotypical babies and toddlers. I see this type of development in my younger two sons (3 and 15 months) as they pretend that a string is a snake or as they feed themselves “peas” from a green Lego.

But when Benji was a baby and toddler, he didn’t play pretend. Honestly, he didn’t play with toys much at all, except for certain types (more on that tomorrow).

If he does make up a story or play out an imaginative game, the game or story is directly related to something he has seen in a movie or read in a book. His brain builds upon what he already knows; creating a new world, game, or perspective simply out of his imagination doesn’t fit in his black and white paradigm.

0fe35-100_3975
My boys love Wild Kratts, an animal TV show. I made these vests when they were 5 and they loved reenacting their favorite shows.

Did you know that the word “Autism” is taken from the Greek word “autos” meaning “self”?
People with Autism typically relate to the world as it fits into the paradigm of what they already know through personal experience (which can look very different from the experiences of a neurotypical person, especially if an Autistic person has sensory integration challenges).
In order to understand another person’s perspective, to understand different situations, feelings, or even cultures, you have to employ the imagination.

This is why personal relationships are often a struggle for people on the spectrum because taking the perspectives of other people requires the use of imagination.

Fortunately for Benji, he relates very well to stories and especially movies. By relating to the characters in his favorite books or movies, I can often help him see the perspectives and feeling of other people, or even help him understand himself more fully too.

All of the signs I discussed today were very subtle. They were there but I didn’t know what I was looking for…

10SignsAutism

Stay posted for Part 3 of this series later this week!

Miss Part 1? Click here!

Want to learn more about our story? Start here!

Is your child on the Autism Spectrum?
What were the signs you saw?
What were the signs you missed?
Share your story below!

 

I hope that our story can bring hope, healing, and happiness to you.
TheBamBlog is trying to grow!
Did this post encourage you or would it inspire someone you know?
If so, please share! Thank you!:)

© 2016 thebamblog.com ALL RIGHTS RESERVED

Posted in Autism, Benji's Story, Mom Confessions, Own your Story, therapy, Uncategorized

We do therapy because someday he’ll be on his own

It was our testing day for Speech Therapy. I sat in a child’s chair at a low table, Benji on my right hand side.

The therapist prepped him: “I’m going to ask you a series of questions.”
And we began.

“You and a friend want to watch TV. You want to watch Ninja Turtles but your friend wants to watch Space Racers. What’s the problem?”

“I like Ninja Turtles!” Benji said enthusiastically. “But Silas doesn’t. He’s three.”

My mind raced. He had rarely, if ever, watched TV with a friend. But he watches TV with his brothers! “Well, let’s say you and Silas wanted to watch Super Why and you wanted to watch Octonauts. Why would this be a problem?”

“But I like Ninja Turtles, but I like Space Racers too. We can watch Ninja Turtles and then watch Octonauts.”

The therapist concluded the segment. “And why would that be a good idea?”

“Because I like them,” Benji answered.

She went on. “You and a friend want to ride bikes. Your friend wants to go to the school play ground, but you want to go to the park. What’s the problem?”

Pause. He had twisted in his seat and was staring at the colorful posters on the walls.

“Benji?” I prompted. “Did you hear what she said? If you need her to repeat the question, just ask.”

He turned around and asked. She repeated the question.

“We can both ride bikes.” Benji replied. “I got a new bike! And I have an Angry Birds helmet!”

“But your friend wants to go to the school playground and you want to go to the park. What’s the problem?”

He didn’t answer he question about “the problem” but I knew what a problem was: He thinks “playground” and “park” are the same thing.

“Benji,”  I interjected. “I know a lot of times we play at the school play ground but it is different than a park.”

The therapist looked at me and said gently and respectfully. “I can’t have you jump in. If you prompt him, it will distort the results of the testing.

Blood rushed to my face. I nodded and swallowed hard, chastised. But I understood.

So I watched and listened. At times, I don’t know who was squirming more: Me or Benji.

A realization washed over me as I sat in agonizing silence as Benji struggled to interpret and answer question after question (in 15 “what is the problem” questions, he could not identify even once that the problem was “we want different things”).

It is second nature for me to jump in and help him communicate. I know when he is confused, which words trip him up, when I need to repeat a question, or when I need to interpret his feelings for him or reinterpret a scenario so he can understand it more clearly.

It isn’t a perfect science; in fact, we probably have a 60/40 success/failure rate with our communication but over the years, I’ve forged tools to help us both cope.

I knew that our session today was just a test, a baseline. I knew we were in a safe, controlled environment, but I felt completely helpless.

I bit my tongue, at times, literally because it was so hard for me to not jump in and help him. My own back ached with the stress of seeing him carry the burden of his inability to communicate.  The disconnect, without all of my normal prompts to hold him together, was so hugely real that it brought tears to my eyes.

I pressed my lips together. This is what it’s like for him, when I’m not around.

This realization reverberated through me, its concentric rings pulsing, widening, until I could see my son as an adult, and my heart broke as I saw him still struggling with communication and relationships, far beyond my everyday aid.

No! I can’t let this happen.
IMG_4432
No. I’m not going to let this happen.

I blinked away my tears, and was back in the present. I put the pieces of myself back together because I knew the truth.

I’m not always going to be around. Someday, I really won’t be able to jump in. He’ll be on his own.

So that’s why we were in this room, this test, this therapy session right now when he is 8 years old.

I can’t help him on my own. That’s why we do therapy: It’s our bridge to Someday, the Someday when he’ll be on his own.

Yes, he struggles right now, and so do I, but each day, with the right tools and strategies, we are making the choice to get stronger, both for today and tomorrow too.