Our Stories

His Beautiful Mind

His Beautiful Mind

Trying to explain Autism, Severe Autism, to someone who has never been around a special needs person, would be very difficult. 

While Nicholas may be a 3 year old in some aspects – he is also a normal 12 year old in others. It is hard to find the words to explain how the 3 year old & 12 year old co-exist in the same body, but I assure you that they do.

Physically he looks like a 12 year old (or older)…, but also “mentally” he occassionaly shows that he is 12. It pops up at the most bizarre and unexpected times.

MY SON IS SMART

He is IN THERE! His mind is trapped in that body, THAT BODY that doesn’t work for him.

Logo showing the 3 & 12 year old co-existing in the same body

Here is a little story to show HOW SMART My Big Little Guy is:

Eighteen months ago, when the world was still normal…, we went on a family trip to Disneyland. My daughter, Macy, begged us to go to Disneyland as a family to celebrate her 6th birthday.  It would have been easier (and cheaper) to leave her brothers at home – but she insisted we go AS A FAMILY. And so we did!

We battled freeway traffic for an hour before arriving at the Toy Story Parking Lot. After parking, we packed up our belongings, 3 kids and a stroller and made our way over to the shuttle bus pickup area.

The 10 minute shuttle ride was peaceful compared to the next 10 hours spent keeping kids happy, battling the crowds, kids tantrums and all the other Magical Moments that make for fun memories that last a lifetime. The Matterhorn experience will have it’s own blog.

AFTER 10 GLORIOUS HOURS SPENT AT THE HAPPIEST PLACE ON EARTH – WE HAD TO DO EVERYTHING IN REVERSE!

We exited the park, boarded the shuttle where I enjoyed my favorite ride all day – THE 10 MINUTES BACK TO THE PARKING LOT!

Then when we got off the shuttle, I immediately knew we were not at the closest drop-off. We weren’t too far, but we could have been dropped off closer. It was as we were packing the stroller and trying to grab onto little hands, that Nicholas started wondering off. He was headed in the right direction and so we let him lead the way.

WITHOUT ANY HESITATION – HE LED US STRAIGHT BACK TO OUR CAR

He has a sense of direction that I don’t understand. I never would have thought he was paying attention or knew where we were when we were unpacking our car to load the shuttle earlier in the day. I didn’t even remember – that’s why were dropped off at a further stop.

At some point over the last year, I realized that he also knows his way around town. He likes to drive me to places…, JK. I DRIVE & LET HIM DIRECT. He will point at each stop sign or traffic light where he wants to go. When I have let him direct me where to go, we often end up at Dollar Tree or In-N-Out.

He KNOWS SO MUCH, but like EVERYONE WITH AUTISM

HIS BODY FAILS HIM AND HE CANNOT COMMUNICATE WHAT HE KNOWS IN THE APPROPRIATE MANNER

“Momma”

“Momma”

Do you want to hear him talk?

Here it is:

HEAR HIM SAY “MOMMA!”

Pulling Moms Hair – April 2021

So there you have it. It may have cost me a clump of hair, but he CAN say it.

Momma!!

I forgot to mention that he also says “Momma” when he is mad. Hurt or mad.

What caused this outburst? It was time to go to school and he wanted to swim instead. Obviously he didn’t want to put on his shoes – He HATES when he doesn’t get his way!!

CAN YOU UNDERSTAND MY FEAR?

What if Nicholas attacks me or someone else like this in public? What if a nice person tries to intervene and HURTS Nicholas?

I would be crushed, but I think I would have some level of understanding because there is no awareness for THIS. Nicholas is too handsome to have anything wrong with him. Looking at him, you would never imagine his face to be THE FACE OF AUTISM.

Overcoming the odds makes for a great story plot, but it is not the ending to EVERY STORY OF AUTISM.

By no means have I given up on Nicholas. He will eventually cycle through this behavior like he has so many other ugly behaviors in the past.

I am so thankful that schools are taking kids back on campus! This was his first week back in over a year and he has gotten great reports from his teacher so far. Once we got to school, he was happy to be there and got out of the car just fine…., he just wasn’t ready for his shoes….

REPLACEMENT BEHAVIORS

REPLACEMENT BEHAVIORS

7 YEARS AGO, WHEN NICHOLAS WAS 5 YEARS OLD, HERE IS WHAT I WROTE:

AUTISM AWARENESS Day 12: Before Nicholas was diagnosed, I found it extremely odd that he would have an absolute meltdown around sand. He hated it at the park and at the beach – and by hated it I mean he absolutely panicked to touch it or have it on him. After he was diagnosed I learned that many kids with Autism have sensory issues. They may not like a certain texture or feeling that particular items give them. They may spin in circles because of the input they receive from it. They may run into walls or hit themselves because for whatever reason it feels good to them. Some kids with Autism that are able to communicate have said that they feel like there are ants crawling all over them or they feel like they are on fire and that is why they hit themselves. The basis of a lot of therapy is to find appropriate replacement behavior which gives them the same input on their joints and what their body is searching for. Nicholas used to run in circles and run into walls. This picture is of Nicholas’ swing which hangs in our living room, now instead of spinning in circles he finds the same enjoyment from swinging in his swing when needed, which is a more appropriate replacement behavior. Another preferred item that he enjoys is playing with hard putty and play dough and as he mashes it he receives the same input on his joints that running into walls used to bring. There is a reason behind everything that they do and once you understand why they are doing it – it can be easier to come up with a more socially accepted alternate. It does hurt me to think that he is in physical pain and we currently struggle with him hitting himself on a daily basis. Through therapy and exposure to sand he now loves to play in the sand. Once we conquer one battle – another one seems to pop up.

THE 7 YEAR UPDATE:

Nicholas still loves sand, mud, swinging and especially water (his LOVE of water will be saved for a different blog). His swing has changed and so has our house. We moved approximately a year ago and the house we are in now is being “designed” for Nicholas’ adult living.

Here is a semi-recent picture of Nicholas in his adult-friendly swing:

We are part of the way into turning the garage into a sensory-fun play area for Nicholas.

7 years ago, Nicholas hitting himself was a big concern. Thankfully he doesn’t do that very often anymore, but just as I wrote 7 years ago:

ONCE WE CONQUER ONE BATTLE – ANOTHER ONE SEEMS TO POP UP

He will still bite his arms, bang his head on walls, doors and other objects. He is definitely a work in progress! Some behaviors are more concerning than others. At this point in our lives – I would say that his aggressiveness towards himself and others is my top concern.

Being on Alert

Being on Alert

One of the hardest parts about being Nicholas’ mom is always

BEING ON ALERT

It has changed over the years, what BEING ON ALERT looks like. The first 2 years of his life, were pretty similar to the same level of “ALERTNESS” as Neurotypical children.

As parents, we expect to be on PHYSICAL/HIGH ALERT for the first couple years of our children’s lives. We have to get up and physically check on them & take care of them since they cannot do it on their own. Then we slowly go from PHYSICAL/HIGH ALERT to PHYSICAL/MEDIUM ALERT then to PHYSICAL/LOW ALERT. As kids get older, our MENTAL ALERTS go up…., Who are they texting? What are they looking at on that screen?

With Nicholas, I was never able to move past being on PHYSICAL/HIGH ALERT.

The worst are his tantrums…. He can go from being kind and sweet – To upset and breaking things or hurting himself or others in a matter of moments.

Here is a quick glimpse of the beginning of a tantrum.

Nicholas’ Tantrum – September 2020

What caused this burst of anger?

Wanting his sisters ice cream after he already finished his.

TOMORROW – is going to be a GREAT DAY IN NICHOLAS’ LIFE and MY LIFE

NICHOLAS IS GOING BACK TO SCHOOL

Doors are opening and they are once again accepting kids on campus!! It has been over a year since Nicholas has attended any type of schooling for more than an hour at a time.

Hopefully we will get more help with his tantrums and hopefully I can turn off my alert button and power down for a little bit.

WOO HOO

Pillow Crumbs

Pillow Crumbs

Pillow Crumbs?

Not sure what to call them, but I have cleaned up more than my share.

Nicholas seeks out sensory input ALL THE TIME. When he was little he would run from wall to wall as hard as he could holding out his hands to catch the “input” of the wall on his hands and body.

He LOVES to tear things up and when it comes to pillows, he really has fun with it.

Good Morning Nicholas – April 2020

It’s not just pillows, he loves to explore the insides of blankets, stuffed animals, mattresses.

We go through a lot of STUFF – OR SHOULD I SAY STUFFING!

One of his nicknames is PUPPY or PUP. He is MY BIG LITTLE PUP. I don’t remember the details of where that Nickname came from or exactly where it started, but it must have been after a morning like this.

The Value of Gifts

The Value of Gifts

Nicholas and Luke / Chronologically they are 8 years, 11 months apart

I imagine Neurotypical 12 year old boys as being easy to buy for at Christmas, Birthdays and other special occasions. I’m not suggesting it would be easy to find an “educational” gift that would keep their interest while enlightening them about Algebra, but if you had the money, it would be easy to put a smile on their face.

Wouldn’t any new “device”/game, piece of sporting equipment, gift card or CASH make MOST 12 year olds smile?

Nicholas would find ZERO VALUE or interest in any of those things.

The gifts that would easily make me or his siblings smile – would be tossed to the ground by Nicholas in judgment immediately after opening. He wouldn’t toss out of anger, but out of disappointment.

He doesn’t understand the VALUE of expensive vs. inexpensive items. Last week he ripped up a $1 bill into tiny pieces. He loves finding and ripping up paper and since currency holds NO VALUE to him – he decided to make confetti out of it.

2 years ago on Easter, Nicholas was the finder of the ELUSIVE GOLDEN EGG. What did he do? He pulled the $10 bill out, tossed it on the ground and went on looking for more important eggs – EGGS FILLED WITH CANDY.

This year the Easter Bunny brought Nicholas a new toy. It put a smile on his face and didn’t cost a ton of money (I’m guessing – how would I know what the Easter Bunny paid). While I’m sure the Easter Bunny and Santa would spend more money to make Nicholas smile – there is no need to.

You can be hit or miss with gifts for him and he will let you know, but it will never be about the money spent or cost of the item. Sometimes, FOR HIM it is only about the music.

Here are 2 videos, one of Nicholas enjoying his new toy for the 1st time and then one of Luke enjoying the same new toy for the 1st time.

Nicholas playing with a new toy from the Easter Bunny – 12 years old

When Nicholas was 3 years old, he did not comprehend many words. He is now understanding so much more than he ever did.

When I asked him in the video to turn the toy around and then to put the Popcorn down – he understood and was able to follow the verbal direction! At 3 years old, he would NOT have been able to do that.

FOR COMPARISON, HERE IS MY 3 YEAR OLD FIGURING OUT THE SAME TOY

Luke playing with Nicholas’ new toy from the Easter Bunny – 3 years old.

For me, it is easy to see them BOTH AS MY BABIES.

I KNOW EVERY MOM SAYS THAT

BUT IN MY CASE

IT’S TRUE

Three

Three

My seven year old daughter has recently been asking

What is your favorite color? What is your favorite number?

Color is easy – it’s the blue green of the ocean

As for my favorite number, I said something random without thinking about it because I didn’t have a favorite number. When I reversed the question on her she informed me that her favorite number is 3, citing the 3 crosses as her determining material.

Lately I have been seeing 3’s everywhere, but my top 3 are:

  • I have 3 kids
  • I have a 3 year old
  • I have a 12 year old who is like a 3 year old

This Video depicts the personalities of my 3 pretty well

In order of Appearance Luke, Macy, Nicholas

So while I have plenty of time to show the aggressive and not so fun side of parenting a child with Severe Autism. This is life with these 3 MOST of the time.

Nicholas has definitely learned that when a camera comes out – SMILE!!

He sure does his best! Sometimes you need to wait for his smile more than the other kids, but it’s worth the wait (in this Mom’s opinion).

‘Tis Easter’

‘Tis Easter’

Nicholas – Easter 2019

‘TIS EASTER’ And surely the same power that raised Christ from the dead can heal my son Nicholas from Autism.  So then,

WHY GOD? WHY HAVEN’T YOU?

That is the BIG QUESTION, RIGHT?  I often pray for peace over people that have this burning question.  

This is what God has spoken to my heart while I searched for that answer. 

John Chapter 9 tells the story of a man who had been blind since birth. The people in Jesus’ inner circle demanded a similar answer from Him.  They asked Him, “Who sinned that this man was born blind, was it him or his parents?”

To which Jesus answered NEITHER.  Jesus goes on to say, “This happened so that the works of God might be displayed in him.”

Jesus heals the blind man, who then goes home to his parents, neighbors and later stands before the people who hated Jesus to declare: 

Jesus is a prophet sent from God and that it was Jesus who healed me

OKAY GOD, YES – WE WANT THAT!!  

Heal Nicholas, give him a voice and HE WILL surely go out and say IT WAS YOU WHO HEALED HIM! 

THE DAY IS COMING AND NICHOLAS WILL BE MADE WHOLE

The same power that raised Christ from the dead – has promised to heal Nicholas. Faith is choosing to praise him now for the healing that will take place and has already taken place in the heavenly realms because Jesus has already overcome this world.

HE IS RISEN!

We WAIT in HIS PROMISES!

His Voice

His Voice

Seven years ago, I wrote a lot about Nicholas for Autism Awareness month. He was 5 years old at that time. Here are some excerpts I wrote about him being Non-Verbal:

“He has Autism, he doesn’t talk yet.” I find myself saying this rather often nowadays. When he was younger I was able to answer for him and strangers would accept this. Now that he is bigger I have to explain why he doesn’t say, “I’m 5, Thank you, Trick or Treat.”

What would Nicky say? I wonder this all the time. What is going on in his little mind? I have already mentioned that he is “non-verbal”. As is the case with many children with Autism, he began with a few words from 9 months – 14 months of age. He could say, “Momma, Dada, Papa, Nana, Bye Bye” then out of nowhere his words were taken away from him.”

He has only had one word that has stuck with him consistently and that is “Momma”. Thank you God!

Written in April 2014 to describe Nicholas

It is now 2021, and 7 years have passed since I wrote those things. Still with all the speech therapies he has received – his only consistent word remains “Momma”. To that I still say THANK YOU GOD.

You may think, well that’s something and YES IT IS SOMETHING…. However, he does NOT say Momma on a daily basis. He does not call my name out from the other room. He mainly says it when he has physical pain and is hurting.

The word Momma gets spit out when he stubs his toe or gets stung by a bee. I could sit in front of him all day and ask him to say Momma, he may be able to say it a few times, but it is not “on demand” or “at will” for him. It is not easy for him to blurt it out.

SO HOW DO WE COMMUNICATE? – IN MANY DIFFERENT WAYS

  • We are currently using Proloquo which is an App that allows him to point to pictures arranged in folders on his iPad. He CAN communicate in this manner, but he is unmotivated to do so.
  • He is physically able to do things some children with Autism cannot do. His gross motor skills have never been a problem. Opening a refrigerator or freezer and getting out what he wants – NOT A PROBLEM. (Not being allowed to have what he wants – PROBLEM)
  • My daughter started her own version of sign language with him. She holds out her hands and tells him to tap one, explaining the hand to his left means no and her other hand on his right means yes. He enjoys communicating with her and I enjoy watching.
  • He has a DECENT head nod for Yes or NO. It’s a weak postured head nod, but he can do it. 99% of the time I feel he answers correctly, versus trying to just move his head because he knows we are looking for movement.

WILL HE EVER TALK?

7 years ago I would tell people, “He has Autism, he doesn’t talk YET.” Now I find myself saying, “He has Autism, he is Non-Verbal and doesn’t talk.”

Somewhere over the years I grieved the loss of his voice along with all of the other hopes I had for him. While it is still possible, the goal NOW IS COMMUNICATION – not necessarily talking. Of course I would love to hear his words, but the most important thing is communication in any form.

No matter how old he gets, as long as I am around I have no problem being your voice MY BIG LITTLE GUY

Just A Note

Just A Note

How sweet I thought to myself as I read “Dear Neighbor” while sorting through the mail. We moved to a new cul-de-sac home and all of the neighbors have been very kind. May of 2020 was an extremely awkward time to move. It was towards the beginning of the pandemic when nobody really knew for sure what was going on. Meeting neighbors while social distancing was difficult.

Safety is always my priority with Nicholas so my introductions to the cul-de-sac went something like, “Hi, I’m Valerie – this is Nicholas, he has autism, he’s non-verbal and if you ever see him out front, alone, unattended he is not allowed to be there.” The more eyes helping me out, the better!

As a neighborhood, we have since joined together not only when the ice cream truck shows up, but have gathered for a birthday and I recently held a movie night and invited all 10 Cul-de-Sac homes. This must be another “thank you” I said to myself.

Then I Read It


“We share the block wall. I’m just south of your backyard. Dear Neighbor, I know this is a lot to ask but I’m hosting 2 wedding showers for my daughter on Sat Mar 6th + Sat Mar 13th from 12pm – 4pm. I’m hoping that your son can stay out of the pool during that time. I know I’m asking a lot. Thanks”

~ Signed by South, Backyard/Block Wall Neighbor with phone number

So to be fair…., they were not invited to the movie night. They are a South, Backyard/Block Wall Neighbor (incase that wasn’t clear) and I only invited the front forward facing neighbors, so I guess my bad.

For those who do not know me, NOW may be a good time to mention that I have had some anger management issues as of late. Responding to this note was definitely going to be a good time to practice some things I’ve learned:

  • STEP 1: BREATHE NO NEED TO RESPOND RIGHT AWAY
  • STEP 2: ASK YOURSELF WHAT DO YOU WANT THE OUTCOME OF YOUR INTERACTION TO BE?
  • STEP 3: USE WISDOM THINK, REALLY THINK IT THROUGH BEFORE RESPONDING

SO WITH ALL THOSE STEPS & THOUGHTS COMBINED I SENT THIS SUPER CREATIVE RESPONSE


“This is your neighbor Valerie. I did not get your note until today. My apologies if he was too noisy last weekend. He will not be home this weekend so it won’t be a problem. Have a great day.”

To which there was a very quick reply


“Thank you Valerie for reaching out. He was not noisy at all during the shower so I thought maybe you got my note. Thanks so much, (South, Backyard/Block Wall Neighbor)

The best word to describe what I felt upon receiving Just A Note, would be the feeling of hurt. Hurt not so much for myself, but for Nicholas. If it had been my Neurotypical children always causing a commotion at the pool, would Just A Note have been sent?

A couple days later, my 7 year old daughter came home and was excited to read Just A Note (which she found on the counter). I let her read it, since she has to do 20 minutes of reading a night anyway…., (joking of course). Actually I let her read it because she is going to be dealing with this all of her life also. She needs to know when and where to stand up for her BIG BROTHER and when to let things go.

As she read, the expression on her face went HAPPY, SAD, CONFUSED. She then asked me, “Why are they being mean to Nicky?” I told her they weren’t being mean to Nicky and explained that they don’t appreciate his songs in the same way we do.

Nicholas’ Song / Video Darkened so you can HEAR the sounds of pure joy coming from Nicholas

I guess it wasn’t the background soundtrack she envisioned for her events and I suppose that is reasonable.

In the end, I think I chose the right response. Thankfully, I can appreciate someone being upfront and straightforward. There is no need to mix words with me, spit it out and let’s move on. She also acknowledged that she was asking a lot, so here is the deal:

Should you ever find yourself in the same situation as South, Backyard/Block Wall Neighbor, where a simple announcement to your guests “we have a special needs neighbor” just won’t cut it.

Say something like “Would you mind keeping ALL of your children quiet and out of the backyard and pool area. Our houses are so close and this is an intimate gathering…”.

ALSO, I WOULD RECOMMEND SENDING YOUR REQUEST WITH CHOCOLATE – IT WILL STING A LOT LESS