5-Star Autism Author
This is what hope looks like -
A New Adventure, A
new Memory – and a Bonus
I’m all about going on adventures and Matt is so easy to please when it comes to taking part in one. As a photographer, Matt is thrilled to see new things and record it all in photographs and video. On our last trip to Grayson Highlands State Park we were sitting on the giant outcrop of rocks in Massie Gap and looking toward the mountain ridges of North Carolina and the large peak within the park where the Visitor’s Center and Gift Shop are located, when Matt and I saw a person standing on the tallest peak of rock – we both pointed at the same time.
“Oh my gosh, Matt! Someone is standing up there! Does that mean there’s a path?” I asked. Matt replied, “Yes! Twin Pinnacles!” We decided right there and then that we must do that hike, and made plans to hit it before the fall was over.
Yesterday was that day.
I picked Matt up around 2pm. He was wearing what I asked – tennis shoes. Matt wears sandals almost all year and for every hike he is in those sandals, but we had researched a bit about the Pinnacles and it was designated as a hard trail – rocks… lots and lots of rocks. Matt needed footwear that gripped the ground and I talked to him about this. He would allow that change because he was determined to complete the trail – hard or not – and he trusted my judgement on the need for good footwear.
Our drive was a happy one – for a while. Matt was so excited he was actually dancing in the passenger seat to the music on the radio. Then we hit a snag – road construction. We slowed to a crawl… and time was ticking by. Matt was restless. I had him google-map our destination so he could keep track of our progress and get his mind off our slow progress. We finally made our exit 45 minutes later and Matt sighed audibly, shifted in his seat and sat up straight, eager to be once again on our way to our new adventure. The rest of the trip Matt was counting down miles and telling me where to turn, and with each exclamation of our progress his excitement increased.
We made it! We parked close to the Visitor’s Center and went in to grab a water for each of us and a map of the trail. As we headed out to the Twin Pinnacles trail, Matt’s outer monologue was in full force – “We made it, OK, now we walk this way and head left… it’s going to be hard, but I have my shoes…”
The first part of the trail was flat and wonderfully level ground, the path was covered in Aspen leaves. Our footfalls were soft and light. As we came to the first sign I knew Matt would need a picture and stepped back so he could frame it just so…. And then as we walked on he talked about the information he had just read, and I was enjoying his outer monologue about the birds and plants and possible bears that we could come across… “Be bear aware, right, be aware . . .”
The trail split – it’s a loop and we could choose to go either right of left. To the left was a sign pointing to Little Pinnacle – so we went left. The trail became a series of stepping rocks going uphill and I was glad I had my walking stick as my knees hate doing steps. My knees are those of someone my age – stage 3 is what my orthopedist had called them while reminding me that stage 4 was knee replacement time. For the most part I baby my knees, wanting to put that inevitable surgery off as long as I can, but I have to hike too – as long as I possibly can. Matt knows this about my knees, and my back. He took the lead straight off and walked purposefully slower, knowing his mom was slow and old. “I’m not that old, Matt, walk faster please…” I would say and he would speed up for a while. He’s very protective and couldn’t help but worry about me. This concern was really apparent each time a large set of stones were ahead in the path. Once he spotted the rocks he would instinctively reach back his hand to lead me through the dangers. This protective behavior is a left-over from when I had back surgery and needed help moving during that first year of recovery. Matt has since been very concerned about just how much I can do and how far I can go. He does this concerned behavior subtly, never making a scene or pushing me to careful. He just stretches back his hand just in case I feel the need to be steadied . . .
“I’m good, Matt – no problems yet!” I said happily, and Matt dropped his arm back to his side and resumed taking photos every 10 feet to record his journey and talking to himself about what he saw and where he was going. I listened to him chat away and was in doing so, knew just how important this particular adventure was for him.
After walking a while – and by the way, it was a beautiful walk under the swaying Aspens, with leaves falling gently around us in the cool crisp air – we came upon a spur to the left – the Little Pinnacle. “Look! Little Pinnacle, Matt!” I exclaimed and we headed up the boulders slowly toward a clearing. The clearing was caused by the outcrop of giant stone, and immediately we felt the full force of the wind. This was not a gentle breeze. This was one of those winds that could knock you off your feet if you’re not careful – and I could see it on Matt’s face that he was worried about the wind . . it was a long way down. I put down my walking stick and grabbed the rock with both hands, keeping low and going slowly and purposefully upward to a flattened area where I could sit and take in the breath-taking view. I knew Matt was watching me…
Matt put down his walking stick, and talked himself into the climb. “Ok, use both hands, stay low, be careful, and hold on to your butt!” Matt moved slowly upward and made it to the flat area of rock. I chose that spot because a large rock lay behind us like the back of a car seat, and enough to protect him from the wind and any possibility of falling. I leaned against the back rock and showed Matt that the wind couldn’t blow me away . . . he steadied himself and then leaned back releasing a sigh of relief. We both marveled at the 360 degree view from the top – absolutely breathtaking. Matt relaxed . . . we were safe. I knew exactly the moment he felt safe as he declared “Time to take even more photos!”
I took several photos myself – such an amazing view - then put my phone away and watched my son. He was ecstatic to be in this place, at this moment in time, on this beautiful blue sky, fall day, and he was recording the entire 360 view. Watching him, I knew this would be a wonderful memory for him. I knew by the smile on his face, the intermittent “Wow” every few seconds as he gazed upon the world beneath us. I knew, because I could see the confidence and courage on his face building, standing on this outcrop of rock – the Little Pinnacle - in the fierce wind . . . oh yes, this would be a day to remember.
When we were ready, Matt climbed down a few steps first, then he reached up his hand to assist me in the climb down. “I’m still good, Matt, thanks” I said, and Matt watched me a bit longer to be sure I would be fine, then suddenly turned away – something had caught his eye. Matt saw an eagle gliding high above us on the thermals – he absolutely had to take a photo of that! He no longer worried about mom, and walked away to get a better shot. I smiled. Eagles floating on thermals were one of my favorite things too – I completely understood the attraction.
I did get down from the rocks just fine – I was slow, but fine – but because I took too long to get on flat ground I wasn’t able to get a picture of the eagle. Fortunately, Matt was more than happy to show me the many photos he took, and they were all very beautiful and I told him so…. He smiled. I do believe I know what I’m getting for Xmas from Matt . . . a beautiful eagle photograph.
The next part of our journey was a series of uphill and downhill and uphill again on rock stepping stones and I was wearing down. A big shout-out to the Boy Scouts and those rest shelters they built along the path. I used every one of them. I can only be on my feet for 45 minutes to an hour at a time before my back locks up and I freeze in place – being able to sit was everything to me, and there were no fallen logs or larger rocks to sit on, so those rest spots meant everything to me. They allowed me to continue going after relaxing my back for a while. During my rests, Matt would look at me concerned, and I would assure him I was doing well and would be up and moving again shortly. He would then take those moments to, of course, take even more photos, but also to look around to make sure no bears would join us. Be bear aware.
Back on the trail we soon came across the spur for Big Pinnacle. We started up and then one of my steps came down strangely and I let out a yell. Damn… hurt my ankle. I looked at Matt, the concern building on his face.
“I think that was a sign for me to take it easy for a bit – that means you do this climb on your own . . . “, I said looking at Matt. Matt’s face lit up – I could see his YES!! Just under the smile. He wanted this, oh man, did he want this – a solo hike on the rocks of the hardest peak. “OK!” he replied, and immediately turned away and headed up those steep rocks to Big Pinnacle. I watched as he walked into the glare of the sunlight shining between the tree limbs… I lost sight of him in that glare. As I sat there rubbing my ankle, I had a few moments of the “what if” – normal protective-mom stuff. “What if he falls?”, “what if he gets hurt?”, “what if he meets a bear?” . . . I seriously hate the intrusions of the what-ifs.
I consciously shut that crap down, and focused instead on listening, trying to hear the “Wow!” I knew he would exclaim from the top. Sure enough, I did hear the “Wow!” and I knew this was more than just viewing the world from on high – this was a really big deal for him personally. He hiked the hardest part of the trail alone, without his mom, as an independent man. My heart was about to burst from the simple knowledge that my son was at the top of the world, feeling whole and strong, and worthy as a human being. He was demonstrating to no one but himself his own courage and determination. I couldn’t see it – but I could feel it – the enormity of it - just as strongly as if I had been standing right next to him to witness it.
When he came down he was beaming, and that sunlight behind him enhanced it and made him look as if he had been spiritually blessed. He sat down beside me and showed me his pictures from the top – marvelous, wow-worthy pictures. He had done what he came to do – now it was time to complete the loop and go back to the Visitor’s Center. He had been successful and was now walking on air.
The rest of the hike was more difficult – lots of uphill climbs that were steeper and I decided the next time we did this I would go to the halfway point and then return the way I came – but I did make it, and more importantly, so did Matt. He did exactly what he set out to do – climb both pinnacle peaks and complete the loop of 2 miles of mostly difficult terrain.
As we were driving through the park toward the exit, I asked him if he wanted me to pull over at the park lookout to get any more last minute photos and was met with a resounding, “YES!” I pulled into the parking lot and as Matt jumped out I found I was definitely moving slower… everything hurt. I walked to the front of the Jeep and sat down on the bumper. My legs felt wobbly and my back was screaming at me. My right ankle was sore, as were both my knees. I looked up. There was Matt – pointing his camera directly at me.
Let me say that again . . . Matt was pointing his camera at ME!. Matt was taking photos of ME! OMG! Matt never takes photos of people – unless prodded to do so. This was unexpected and unsolicited. This was new. This was my bonus to the day. I felt like the most special person in the history of the world! My son wanted pictures of ME!!
So that’s my story. It was a new adventure and one that brought wonderful moments that I will never forget. I made memories for myself, and I provided Matt with new memories too. And, to top it all off, I got a bonus – Matt took pictures of another human being – and I feel so privileged that it was me he chose to be his first.
It’s a bonus to this entire year. I have spent this year trying to give my son the new experiences he craves (while staying away from populated areas), and I’m doing what I can on a limited income. I was afraid I would not be able to give him much this year, as I’m stretched pretty tight financially and it’s hard to find activities that we can do without being around others. But, as it turns out, hiking is enough.
Matt continues to blossom and keep me amazed. He continues to remind me that he is a grown man and can do so very much on his own. He also reminds me that he still enjoys his time with me – that he cares about me and that he loves me. This day was another special day for us both. For me, it was also one that reinforced how strong and independent he has become, and what wonderfully caring person he is.
It’s hard sometimes, for me to reconcile what I see before me now to the memory of his doctors advising me to institutionalize him at the age of 2 years old. His diagnosis was so very dire . . . and there were no therapies, no strategies, and no medications to help him. All I had in those early days was hope.
This wonderful adventure we had today? This is what hope does . . . this is what hope looks like. It's the result of all that hope . . . .the result of never giving up.
Watch the video and learn about Matt
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I am sitting here holding my book... thumbing through the pages. I am quite aware of it's heft in my hands, and I am in awe that it is real.
The cover design was all me - a bit artsy as it is just a bit blurry - a visual representation of how we tend to have trouble really seeing our children under the autism behaviors. Not sure if anyone would even understand that just glancing at the photo.
The inside is completely organized the way I wanted it to look - breaking sections into small digestible pieces that can be read and set aside easily when life interrupts, because life always interrupts . . .
The foreword brings me to tears every time I read it - my oldest son wrote it about his brother. It grabs my heart every time.
I look at the reviews and I am in awe of each one - 5 stars - their
kindness and their candor means so very much to me. I feel blessed.
Even the reference pages make me proud - so many scientific studies
that highlight each point. The scientist in me would have it no other
Then there's the real-life stories... so many stories. Stories that reveal how I found the clues I did - the clues left for me by my youngest son as he attempted to train me to communicate with him his way. A journey toward understanding. Discoveries and subtle details. A winding path. A road less traveled. Hope.
I hold the book and I can barely believe it. No one else has ever written about the non-verbal communications provided by the autistic child in their attempt to "speak" to those they love. It's the first book of it's kind - and I feel honored to have written it (does that make sense?)
This is a memory I will always hold onto... the fulfilling of a dream . . .
So many of my dreams were never realized - life happened, you see. But
this one, this dream I had for myself, this one came to fruition - and I
am allowing myself the time to just "feel" it all.....
Waxing poetic... it's what I do... I write and I know things... :)
Interview with Shannon Penrod of Autism-Live
He spoke with his heart, I listened with mine – And amazingly, we heard each other.
The 12 ways in which we communicate -
- Facial Expressions
- Eye contact and Eye Gaze
- Body Language
- Personal Appearance
Communication and social interaction
requires information to go in both directions and when learning to communicate
with an autistic child – an individual with a communication disorder – it is
imperative to use all forms of communication and not focus on simply one or
two. Keep in mind that attempting to communicate by primarily focusing on
speech may actually work against overall communication efforts. Autism is a
communication disorder and the hardest part for many is language – including
speech. Someone who has difficulty
understanding speech can become so frustrated trying to understand what is
being requested of them that they may choose to withdraw from the interaction
completely, preventing any new learning from taking place.
In contrast, using all the other forms of
communication in the toolbox in addition to speech, can ensure that even in
times of high frustration, stress, or overwhelming fear, that there will still
be plenty of ways to effectively communicate compassion, safety, patience, and
understanding, allowing the overall goal - the exchange of ideas - to still be
AWARENESS is EVERYTHING
There may be a day when Matt will not get a photo with the Hokie Bird …. But it will not be this day.
That was my train of thought as we prepared to go to the 2018 Spring Game at Virginia Tech. Last year we didn’t get that desired photo – the Bird never got close enough and we could not get through the crowd when he was. Matt had several photos, some taken at a distance and a few close-ups, but it wasn’t a “win” if he didn’t get a hug. Now, a year later, Matt was overdue for that Hokie Bird hug. His resolve was as great as my own when we arrived on the campus. Both Matt and I knew today was most certainly going to be the day.
It was a beautiful day – warm and breezy. Matt was in high spirits. It was looking like the perfect day – and in all respects so far, it was. As with every “big day”, Matt had not slept the night before. Too much excitement, too many hopes and dreams on the line to rest. He was running on nervous energy – focused liked a laser on hunting that Bird.
We entered the South gate and walked around and did the tunnel lap. As we walked I had Matt practice, “Hi Hokie Bird! Can I get a picture?” Matt practiced the sentence several times until he felt sure he could do it. If he found the Hokie Bird and I wasn’t with him, he needed to be able to speak the words – or be ignored like he was at the Duke game. At that game, Matt simply could not say the words and I was much too far back to help him… he never got his hug.
We had time to kill and so we went window shopping at the
Hokie Store, checked out the views from various openings and took pictures –
lots and lots of pictures. No matter where
we were or what activity we were doing, I knew Matt was on the lookout for that
elusive rare creature. We all looked,
but none of us spotted him. It was time
to find our seats.
We found some great seats on the South end in the end-zone –
Matt is very fond of the end zones more than the general home team stands. In his mind, the Hokie Bird loves the south
end zone. That’s because there were several
fall games over the years where we witnessed the bird hanging out and crowd
surfing at exactly that location – and now, this is where we go in hopes of not
just watching, but participating in the fun.
Unfortunately, the last few years the Hokie Bird had avoided the southern end-zone at the Spring Game. Would he again this year? Tom had come with us to help us in our quest – and that meant there were 3 sets of eyes straining in search of that maroon mascot.
It was getting close to game time when Matt yelled out, “I see him!” pointing toward the opposite end zone. There, just outside the tunnel, was the Hokie Bird, doing his happy strut in front of the general seating. We watched as he waved and strutted and did a cartwheel for the kids in the far end of the stands… but he wasn’t coming our way – nope - He seemed to just be focused on that one area – where loads of children had gathered to wave and watch.
Oh Hokie Bird, please come this way…. But no. The bird was pretty much going to stay right
where he was.
Will he get a chance to hug the bird? Will the bird come this way? Will he disappear like last year before the end of the game, giving us no way to catch him? I had promised Matt we would get that bird this year . . . I had PROMISED!
I jumped to my feet and shouted, “Come-on Matt!” before I even realized what I was doing. I headed down the steps and called behind me, “Hurry!” Matt popped up and hurried to catch up. This momma was on a mission, and Matt knew exactly what that mission was and where I was headed. But the way was blocked… only those with special passes were allowed on the field before the game. Matt was hesitant – because he knew his momma did not belong there.
We both made it down the steps, but as I went onto the field, Matt stayed behind the gate – hesitant and unsure. The closest official gave me “the look” – that stone face, immoveable, professional guard type look that makes even the biggest fans quake. He stared me down and said, “Do you have credentials to be on the field?”
“No sir, I do not.” I admitted, “but we need to get a picture of the Hokie Bird with this young man” and then I leaned in and begged. “This man is autistic and that Hokie Bird means everything to him. I just need a picture and we will come right back”. I’m a mom… a mom of an autistic adult who loves that bird… I am not above begging.
As I spoke to the official, Matt stayed behind the gate
watching. There he waited apprehensively
– He looked absolutely terrified, about to jump out of his skin. The look on the official’s face was doing its
The official looked at Matt and then at me, “You do not have
the credentials to be on this field” then paused a second and said, “so come right
back”. OMG!!! That’s a yes!
I turned and looked at Matt, “Come on Matt, hurry!!” Matt flew through the gate and rushed onto the field. I told him we could go after the bird, but we had to hurry. Matt stayed right with me as we sprinted down the sideline toward our target. The Hokie Bird had no idea of course, that he was being stalked, and he turned to head back toward the tunnel. No Hokie Bird, no!
Instead of the tunnel, the bird headed under the North stands and when we were within about 15 feet from him I yelled, “HOKIE BIRD!!”
The Hokie Bird abruptly turned and stopped. I was about 5 feet in front of Matt and had just a split second to explain to the mascot that we needed this – that Matt needed this photo. As I finished my sentence, Matt arrived - and the bird leaned into Matt and hugged him.
A hug. A Hokie Bird hug. I took their picture, then I used Matt’s camera and took a few more for Matt. Matt was smiling greatly – he had no words… They hugged again and we had to leave.
“Matt, I promised the guard that we would come right back – I promised…” Matt understood, and a way we flew back down the sidelines and back to the south end. As we approached the guard he asked, “Did you get a picture?” “Oh yes!!” I exclaimed as I whipped out my phone and found the few I had taken. I showed them to him. “You did a good thing today“, I said to the official, “you did a really great thing today….” The official smiled just for a second then immediately returned to the stone face professional – trying to hide his joy.
Matt and I returned to the stands, out of breath but elated. My knees screamed at me as I reclimbed the steps to my seat. When I finally got back to my seat Tom showed me the video of us sprinting down the sidelines . . . wow – we were really flying.
Matt spent the rest of the game relaxed and enjoying the
plays on the field and the antics of the bird on the sidelines. He wasn’t anxious. He was simply relaxed and happy. All stress had been removed.
Oh wait, but there’s more….
Toward the end of the 4th quarter guess who came down to the south end zone? Yes! “Matt! Go!” I shouted and Matt jumped up and headed down the stairs. Tom jumped up and headed down with him. My knees said – ‘no… sit woman’.
I watched as Matt inched closer and closer through the crowd that had quickly gathered to see the bird. I stood up, barely able to see the top of Matt’s head – but enough to know the Hokie Bird was right there with him. He was there quite a while, not wanting to leave I bet, and I wondered, did Matt say the words? Was he able to get them out? “Hi Hokie Bird! Can I get a picture?” You can do this Matt, I cheered silently.
Shortly afterward Matt and Tom arrived back to their seats, both were smiling ear to ear. Their body language said it all. But what I wanted to know - and I was about ready to jump out of my skin – was Matt able to say the words? I asked Tom.
“Yes!! He stuttered just for a second and then said, ‘Hi Hokie Bird! Can I get a picture?’ He did it! The Hokie Bird stopped and gave Matt another hug and a high-five”. Matt proudly showed me his pictures – he was smiling greatly - and giggled - but he couldn’t speak . . . not yet. A little while later he told me all about it.
I can’t stress enough how massive this all was. As a child Matt was fixated on Thomas the Tank. As an adult it’s the Hokie Bird who has his heart. It is not just a hug, not just a high-five, and not just one sentence spoken under stress. Each has an underlying emotion. Each was huge!!
It didn’t matter that he was 32 years old or that the Hokie Bird is just a mascot. To Matt, that Bird is EVERYTHING. Not only was he overjoyed by the pictures and the touch (hugs and high-fives), but Matt was proud of himself for being able to SPEAK to his most treasured “friend”.
And just so we are clear, that official on the field that allowed us to go after that bird, did so because AWARENESS works… I saw it on his face. That official understood the second I said “autism” that this was not just some fan wanting a photo-op. He got it… he bent the rules to accommodate my son’s needs.
Just as the Hokie Bird is everything to Matt – awareness is
everything to me. It allows me to do my
job the best way I can.
I am Matt’s ‘Bringer of Dreams’… and today, because of awareness, it was mission accomplished.
Honored on August 11, 2011".
Liz Becker meets Temple Grandin!
Autism Act of Love Challenge
Matt and I took the challenge. I went first so he knew what to do. He didn't like the idea of eyes-closed to draw, so I leaned in as he was drawing and told him it was okay to open his eyes if he wanted to.... but he didn't.