Month: May 2014

Must watch videos…

As I promised, here is the link for the Temple Grandin and Eustacia Cutler talks that were given at Northwestern University On May 21, 2014.

I hope you listen to both… ❤

 

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Water, Waves & Chasing Birds.

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Jasan has always loved water. This makes me very happy because I too, have always been a big fan of the water. The pool, the beach, all of it. The first experience Jasan had with waves was at the age of 2 when we took a quick trip to Michigan with my father. It was a 3-day stay right on Lake Michigan at this cute little cottage. Day one was spectacular… perfect temperature and calm waters. Jasan was having a blast in the water! Day two and three the waves were up and about, and he was quite frightened to go near the water. This was the first beach experience for him and he didn’t want much to do with sand toys and such.

Fast forward 2 years and our experience at the beach was much different! He found the sand to be of some interest, not necessarily to use buckets and shovels to play with, but definitely to kick in the air. Ha! (Not so funny though, when you get sand in your eyes…good thing that didn’t occur.) The waves were a huge hit! We developed a routine. I would walk in the water behind him as he held my hands. He would lead, and we inched our way deeper into the water and CRASHED into the waves with our bodies. I would pull him up a bit with his arms so that salt water would not get in his eyes as the waves came up on us. Of course I added the “WEEEEEE!!!” sound effect with each crash. (It’s a Heidi mama thing…)

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Jasan being a sensory seeker, crashing into waves makes total sense. I love how as he is becoming more aware of his surroundings he is being brave! He wasn’t afraid at all. AWESOME.

 

The pool is always fun. He LOVES the pool and always has. (Who wouldn’t love a HUGE bathtub?) My little dude will NOT wear floaties. He will not allow me to even get them near him. As much as the floaties would be much more convenient for me (they are so well made now that kids could literally be in the pool without you…) my thought process is, he will not have a false sense of safety in the pool. I need to be with him at all times, but I would want to be anyway. This way we stay connected and he learns how the water REALLY feels. I’m guessing this will speed up his learning curve when it comes time to actually swim.

The lovely Far Horizons, where we stayed in Redington Beach, has a pool for guest use, and is situated right on the beach. Pretty dreamy. This was great for us to have both (pool/ocean) literally steps from our hotel room.

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Since it had been almost a year since last when we had been swimming, it took a day for him to get really warmed up to the idea of going “under.” It was almost like he forgot that he had done it before. We had a little oops where he went under, and then it was ON. We would go under together, one at a time, hold our breath for as long as we could, float, “swim” 4 year old style…it was fabulous.

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Jasan was big on GPS during this trip. It was a continuing theme the whole time we were there. It started in the shuttle from the airport. He requested my iPhone, which he does often during car trips, to load Maps and start the GPS. Then seeing the shuttle driver with his devices, his brain went into GPS & Garmin overload. (And remember, Jasan, being in our friend’s Piper Cherokee airplane, has been obsessed with Garmin ever since he first sat in the cockpit. Garmin, in any case, is always a BIG DEAL to him. It all goes back to the airplane…definitely in his “most awesome experiences” brain file.)

While we were in the pool, I would sometimes lay on a raft. He would push me out into the deep end, and would make up his own directions as I floated away. He remembered that we were staying on Gulf Boulevard, so when I would return to the shallow end and float under the railing (a.k.a. “the bridge,”) I was returning to Gulf Boulevard. Hilarious. I loved it.

 

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Not a new concept for all kids, but it was new one for Jasan. Chasing birds. He had never seen birds of this size before, so the fact that they were just hanging out all over the place was the coolest. And why not try to touch one? Again, awesome that he wasn’t afraid. The game became to make them fly. Most of the time, he was too quick for me to get a great shot!

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So close…

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If only he could reach! He wanted me to pick him up. That made me giggle.

Unfortunately, there were a couple of cloudy days during our Florida stay. So on a day with a high chance of rain, we returned to this cute shopping area. The birds must like this spot, because they were still there.

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I was totally loving how happy this made him!

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And, anytime I get eye contact when taking a photo… BONUS!

The last evening we were in Florida, the three of us (Grammie, Jasan & me) took a walk on the beach. (Note the pinwheel: if it spins, Jasan loves it. That was the purchase he wanted to make during our cloudy weather shopping spree.)

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And then… THIS HAPPENED.

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YES!!!

I was ready to shoot this time.

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The chasing birds theme has continued even now that we are home in Illinois. It isn’t quite the same, but it makes us both smile… that’s what counts.

The Airport, Part 1.

Ok… I have to admit. I have stressed about taking Jasan on a major airline flight for a LONG time. My only sibling, Todd, moved to Arizona right before Jasan’s first birthday and we have never been there to visit him. Jasan will be 5 this year! So, this airport thing was a big deal.

There are many factors that I was worried about. He was one of those babies that had ear infection after ear infection and two ear tube placement surgeries. Would his ears adjust alright? The length of time that we would have to stay seated once in the air was another concern. Waiting in lines at the airport… security, getting distracted by machines and having a meltdown if he couldn’t examine them…new sounds, lots of people, and on and on and on.

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This gift of a trip to Florida for Mother’s Day from my stepdad, Matt (aka “Grampie”) was the perfect occasion to give this all a try. Now that Jasan is a bit older, my level of concern had lessened, but they were all in the back of my mind nonetheless.

We prepared the week ahead of time by reading social stories multiple times a day written specifically about our upcoming trip and the airport routine. This was a tremendous help. A couple of days prior to leaving, we found this video which was fantastic! Jasan watched this over and over. All of these tools combined helped him know what to expect.

Here are a couple of pages from his airport story so you can get an idea of what a social story looks like.

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The other component to this was how prepared my Mom and I were with our mindset. We knew we had prepared Jasan very well for this experience by talking it through with Jasan ahead of time. We gave ourselves MORE than enough time to get to the airport and go through security so that we could feel completely relaxed, and our mental pictures and attitudes towards our adventure were POSITIVE. That was KEY. We knew that we would be able to deal with whatever may happen and that we would be a team together.

He needed to be able to take the time to explore and check things out if he wanted to. If we had been planning on rushing through the airport, we would have been destined to fail. He needed to be able to just be himself. His mind would be absorbing tons of new information. I think that to make sure that he would be storing these memories as a positive experience, it was vital to make sure he would be able to soak it all in the way HE wanted to.

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Jasan did beyond fantastic! What a fun experience! He handled transitions and all of the newness like a champ! He was fascinated by all of the computers and the metal detectors. The huge O’Hare terminal was pretty awesome in all of it’s vastness. He was such a great helper by pushing our small carry-on suitcase. It had wheels, so he wouldn’t have had it any other way.  (I was too busy making sure he wasn’t going to crash into anyone to capture a shot. Lol!) When it was time for a bit of relaxation, the carry-on suitcase then doubled as fun seat to ride on. (And an arm workout for Mama. haha.)

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Then… time to board. So exciting! Another important piece to this experience was informing the airline that Jasan was a special needs kid. We boarded first, so this way their wasn’t tons of confusion with the large masses of people getting on with us. We were able to get nice and comfy in our seats while things were still quiet. We had recently purchased a weighted blanket for Jasan; being the sensory seeker kid that he is. In times of possible stress, this could act as a calming tool for his system. Since that little sucker weighs 7 lbs, I had put it into the roller carry-on suitcase and we just grabbed it out after we found out seats. It worked out perfectly. He was all cozy and content with his special blankie, iPad, mini pillow, snacks, Mama & Grammie. Life at that moment was GREAT.

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Then of course, because I’m me, we had to do the obligatory selfie or two. (ha!)

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I crack up when we do photos together now. He is soooooo my son. My friends know my habit of the open mouth, “Ah!” whenever a photo is shot of me… Check Jasan. Totally adorable. We both “Ah!” together. ❤

It was take off time! As the plane started to speed up, he requested my hand right before the plane’s wheels left the ground. Prior to that he had his speedometers going OF COURSE.

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I had just enough “stuff” to keep Jasan occupied. Our flight was at 12:30, so time of day was also on our side. He did just fine sitting in his seat and only getting up twice to go to the neat little bathroom. He was quite interested in how everything worked in there. Swallowing water through a straw as we were descending helped his ears normalize with no problems. And the super cool awesome surprise once we landed…

GETTING TO VISIT THE PILOT IN THE FLIGHT DECK!

Can you even imagine how cool this was for him? All of the gauges and switches!!! COOLNESS OVERLOAD. Along with being a photo fanatic, I took a video so Jasan could watch it over and over after the experience. We lucked out by getting a pilot who was TOTALLY into showing Jasan what was up in there. He was FANTASTIC. What a gift… more than he will ever know!

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He was talking about this all day.

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After grabbing our luggage from the baggage claim, which was also a point of interest for the little dude, we headed on over to the shuttle area and hopped in a van to take us to Redington Beach. After all the excitement, he passed on into snooze land.

I didn’t do the best of capturing it, but he fell asleep with my phone in his hand, GPS talking to us all the way. The shuttle also had a computer and Garmin GPS in clear view, so he was quite content with our ride…

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More to come!

 

 

Temple Grandin.

Let me tell you… I am still on a high from meeting Temple Grandin yesterday!

Wow. On top of being in awe about seeing her in person, she also autographed my copy of  “The Autistic Brain” which was great, and I gave her the information to view this blog! Oh my goodness.  I hope she actually takes a look…

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I would love to tell my story of why she means so much to me.

In the fall season of 2013, Jasan was going through a stage where tantrums were happening frequently. His speech was not as good as it is currently, and I am sure he was in a frustrated state…often. At this time I was not aware of his autism. Floating around in my head was the comment made to me by one of his early intervention therapists, “He may be on the spectrum…” but honestly, I was clueless to what that meant. Months had gone by after hearing that, and life was becoming increasingly more difficult with Jasan. During this time period, I compared him daily in my mind to the neurotypical children I work with every day through my job.

I thought, “Why is it that I can have more of a conversation with some of the 2 and 3 year olds I work with rather than my own child?” “I wish that Jasan would blurt out cute random things like little kids do…” “I wish Jasan played WITH other kids instead of ignoring them.” “Why doesn’t he join in at group settings like typical kids do?”

This list of comparisons went on and on.

Then, I lost it. It will be forever ingrained in my memory the day that Jasan threw a mid-day tantrum that I couldn’t handle. It happened during the nap time routine. He was hitting and kicking me and I had just had enough. Up to this point (and even now) I considered my patience level with Jasan to be very high. But on this particular day, I must have been off. He actually hit me to where it HURT, and I could not take another second. I screamed and yelled at him to stop, which did no good whatsoever. I locked him in his room and fell to the floor and just wept. He was screaming at the top of his lungs for me to come back into his room, but I just couldn’t. I had to regain myself. I had to calm down. I honestly was at a loss and DID NOT KNOW WHAT DO TO WITH MY OWN CHILD.

This is a feeling that is beyond helplessness.

After a minute or two, I went back into his room and somehow got him to sleep. As I was leaving his bedroom, I was prompted to search for “autism” online. I had never felt that before, and autism wasn’t even a topic that had entered my mind since that comment that I had received from his previous therapist many months earlier. As I sat with my computer in my lap, the first article I read felt like it was written specifically for me. Halfway through, tears started pouring down my face as I realized, “Jasan is ABSOLUTELY an autistic child.” I remember this article named specific details that described potential autistic tendencies. Memorizing license plates…Oh my goodness. Jasan memorizes license plates and associates them with every person he meets.

That is what really got me. In all honesty, at that moment I was completely devastated. DEVASTATED. This was not something that I was ready to handle or even knew anything about! Where was I to begin? What does this mean for his life? For my life? A million worries and questions crowded my mind.

As I kept reading article after article, I came across a short, beautifully written piece that I felt compelled to share on Facebook. Because I work with little children in my profession and see other childcare workers daily, I know that there were many out there (including me at that time) who were simply under-educated about kids with special needs. Through no fault of their own, they just weren’t, and aren’t, well informed. So, with that in mind, I posted the article hoping it would resonate with some. I’m sure at that time in my moment of absolute freak out about my own child, I cryptically wrote something along with the article. A good friend who knows me well, saw right through that and called me a couple of hours later. She and I do not talk on the phone very often, so her call came as a surprise.

She told me that she had read my post and felt the need to drive a movie over to my house. She said that it was very informative and that it might be inspirational…and to just WATCH IT. I sure did, that very night. And that, my friends, was when I was introduced to Temple Grandin.

Watching her story unfold was incredible. I was crying, I was happy, but most of all I saw Jasan in that movie. That watershed moment expanded my awareness tremendously and created amazing clarity for me with my son. What brings tears to my eyes was experiencing Temple sharing her story with all of us. And this is why I finally UNDERSTAND MY OWN CHILD.

The only people who will ever really be able to understand the complexity and emotion that goes into what I am saying are the parents of an autistic child.

The years of not understanding all came into the light. My love for him grew even deeper knowing that he is completely unique.  I and realized I had so much to learn. But Temple Grandin gave me hope. She opened my eyes. This is where my new journey began.

That day… those events… that movie.

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So, as much as I was just another person with a book to sign and someone who wanted a picture with her, she will never know how much HER LIFE changed MY LIFE. My awareness and my complete acceptance of how beautifully my son is wired will change HIS LIFE.

Thank you Temple Grandin. I have the utmost respect for you and your brain. You amaze me as well as so many others.


I am very pleased to share with you all that the lecture that was given at Northwestern University last night was recorded. Her mother, Eustacia Cutler, also spoke. All I have to say is that my mind was blown. What an evening! The Family Action Network is the organization that put this event together. They will have this lecture on their website in a few days. I will be posting the link to that as soon as I see it! It will be a must watch.

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Florida baby…

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We are having such a blast. Jasan’s first vacation! Tons of firsts on this trip… much to share, but I am trying to soak up every moment instead of being aware of where the camera is. 🙂 Actually haven’t been photographing him nearly as much as I thought. I need time to go through all of my shots (and thoughts!) which I will do when we return to the cold in Chicago. ❤

Much love!

Heidi & Jasan

The life skill of laundry.

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Washing machines and dryers have been a huge point of interest for Jasan lately. While most kids would love for their mom to say, “Hey babe, wanna go to Monkey Joes?” My little love starts getting excited about my mention of swinging by Best Buy to hang and check stuff out.

Side note: I refuse to take him to Monkey Joe’s because he isn’t at all interested in the big jumpy inflatable things, he makes a beeline for the air compressors BEHIND the big jumpy inflatable things. Of course he would! They are machines. They kinda look like fans. (Major plus.) And, they make a cool sound. (But what MAMA sees are his fingers going into like 4 inches of nasty dust. No one cleans off the air compressors. EEK!)

Ok, back to laundry…

Before this blog was established, I posted a photo on the Following Jasan Facebook page of my little dude in the laundry room at a friend’s home. (see below.) That is where this new obsession with the laundry began. Front loading washer and dryer, top of the line, makes delicate little beep sounds when you press the many buttons on the front of the machines… ah. Digital, digital, digital. Heavenly for Jasan. You leave him in there to do his thing and after awhile he has a pattern going while devouring all of the finite details of it all.

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At first I was a little embarrassed that he started preferring hanging out in the laundry room when we would go to their home, but I let that go. I wrote in that previous Facebook post that Jasan and I are blessed with friends that DON’T judge. They love Jasan just they way he is. When I am surrounded by that kind of support, it is easy for me to let Jasan do his thing. But overall, the cool thing though is that I had to dig deeper. Now I AM in a place of complete acceptance. In those types of situations, it was all about ME and my fear about what OTHER PEOPLE MAY THINK about my son, whether it be non-acceptance or judgments.

Yes, in the neurotypical 4 year old’s world it may be weird to be so intrigued by a washing machine. Or, it may be fun to press the buttons for a few minutes, but then would probably get boring. For my son, his brain is completely examining everything. The sounds, the cycles, what happens and the motions in each cycle, how many minutes until each cycle completes, which lights are lit and when… all those great details that bring his brain ALIVE.

If I love him unconditionally for who HE is, why would I want to redirect him to play with typical kid toys that he is not interested in?

I now realize that if I want to be his cheerleader and his number one advocate, I will stand by him and be his encouragement even if some other kid or adult may think what he is doing is odd. That is okay. It’s not odd in my son’s world.

Maybe the autistic brain’s world is wayyyyyyy cooler than you or I see the world.

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And, who’s to judge anyway? Acceptance is such a huge thing for all of us. Wouldn’t it be awesome if everyone could figure that out?

And this washer and dryer obsession, it will fade after awhile… but man, he will sure have this life skill down.

Bonus for mama. 😉

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I love that the sign on the cart reads,

“ANYTHING YOU WANT IS POSSIBLE.”

Perfect.

 

But, how does it work?

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One of the things that I completely admire about Jasan is how he has to figure out how things work. He has always been this way. I am sure this is common for a huge population of boys, but I think the autistic traits in Jasan set him apart.
He saw the neighbor kids outside with their bikes a couple of weeks ago. He looked very interested, so we are giving it a try. The super excited, “oh my goodness! His first bike!!!” mom part of me just wants him to get on and ride. Practice getting those pedals moving and steering at the same time.
You know, the way a typical kid would do.

But, my new mantra, HE WILL DISCOVER AND LEARN HIS WAY.

If he walks alongside his bike most of this summer and watches the wheels go around, or wants to turn the bicycle upside down so he can move the pedals with his hands and figure out how it all works, that’s perfect in our world.
He will ride into the sunset when he is ready. 🚲 ☀️

Numbers + Clocks = So very interesting.

Jasan has been drawn to numbers ever since he has been on this planet. In fact, he has quite an obsession with them. He has been known to just carry around an arithmetic flash card just because of the numbers. They make him happy. I don’t think Jasan stands alone with his attraction for numbers in the world of autism. I am 99.9% sure that many in the autistic community have a love affair with them.

Once he started noticing clocks, the hoarding began. (ha!) Every visit to a store that sold clocks of some sort, he REALLY wanted one. His room has a mighty fine collection. When you just sit there in silence the “tick tocks” are in surround sound.

I love this kid.

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It’s a big world out there…

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When I look at my son now, I look at him differently than ever before. I am now aware of his autism, and when I look back on his 4 1/2 years of life, it makes sense.

My take away from this?

He has always been Jasan. Precious Jasan taking in the big world around him, in HIS way.

Me? Hmmm. It’s been quite the journey so far. I didn’t even think for a second that I would have a child with special needs. My expectation of what I thought he was going to be like is NOT who he is. I cannot fit him into the neurotypical child’s box like I was trying to before. But, you see, I didn’t realize I was doing that. I was living my life with Jasan expecting him to just get it, as much as a toddler can. Meaning… transition without problems. Eat a variety of foods. Talk to me in sentences. Have a conversation with me in a 4 year old way. Tell me, “I love you Mama.” Not obsess over things. Sit and do crafts at playdates with the other kids. Play with toys. Play with other kids! Pretend. Enjoy opening presents on Christmas and birthdays. Get excited about Santa and the Easter Bunny. The list goes on…

I wallowed and cried and focused on what he “wasn’t.”

But then, I CHANGED. That wasn’t the mom I wanted to be. I love my son beyond comprehension.

Our journey together will create his life. I want it to be full of positivity and creativeness. I want to focus on all of his amazing strengths and grow those within him. He was meant to be my son and I was meant to be his mother. I am willing to be vulnerable and share our journey with you.

My goal for writing this blog is to change the tone. Change the perspective. Reach out to parents who are struggling with their autistic kids and hopefully help others see the light in their beautiful children.

Proverbs 22:6… Train up a child in the way he should go [and in keeping with his individual gift or bent], and when he is old he will not depart from it.