special needs

Milwaukee Marriott.

Because Jasan is so literal, exposing him to new things is paramount. The more memories in his mind, the more he has to relate to. Sometimes I find myself getting complacent about the weekends because the week is so busy. Well, I am making an effort to change that.

We had such a great time at our first hotel stay, I decided that we should do another…but add a mini road trip to get there! Milwaukee; HERE WE COME!

Leaving for Milwaukee!

Yes, I realize Jasan looks less than enthused, ha, but that had more to do with the fact I was taking ANOTHER PICTURE. ūüėČ

Once we hit the expressway, he rolled his window down and was feeling the speed. He usually isn’t a fan of wind in his face, but he was loving it. I was loving watching him experience it. He was embracing his hair blowing in the wind and the feel of “mph” in his little hands. So cute.

wind blown.

One of the many things I love about him is his ability to interpret sound and memorize it in such a detailed way that when he recreates certain sounds on his own it’s freaky good. Lately no music in the car has been his choice. “Mama, car sounds only.” I can only imagine what he was taking in when I look at that photograph.

While we were driving we talked a little bit about what we might do when we are there. Jasan’s idea of an amazing weekend would be literally to not leave the hotel. And honestly, on these hotel adventures, I want to just follow his lead. All week long he is told what to do at school. He would play outside until 9:00 at night if I let him, but he has to come in early to get to bed on time. It’s this and that or another thing, so on this weekend I let him run the show. I love watching him do what he loves and to see where his inspired impulses lead him… and I take photographs.

I pretty much knew I was in for tons of elevator and treadmill time. Maybe a splash in the pool, but the elevator was going to be his deal.

Here is the elevator!

And… he found them.

Observing, listening, looking. Checking out every nuance.

We walked into our suite and he squealed with delight when he saw the microwave. (That was worth the extra $ for the suite just for the look on his face. He also has a thing for microwaves.) I did my regular OCD unpacking thing and organized our space. I was pleasantly surprised and pleased at how nice our suite was, which made it even more fun for me. (I have a thing for fabulous hotels…)

We went to explore the hotel and tackled the workout room.

mama / jas selfie

how does it work

mama / jas selfie

We met a couple of friends in Milwaukee and they were with us for part of the afternoon. Edward knew his daughter Eva would love the pool at the hotel, so they joined in some of the fun. I was excited to introduce Eva to Jasan for a couple of reasons.

First being HER NAME. The movie Wall-E! And you know… Eve “ev-a!” Jasan is obsessed with that movie. Just the fact that he could meet a real Eva is so cool. And, he loves girls, so perfect combo. Eva also is beautifully autistic, so I was really looking forward to them interacting together.

Eva joined us in the workout room. My silent photo shoot started. ūüôā

Eva left Jasan right.

Jasan left Eva right

eva and jasan

treadmills

eva and jasan

And did I mention how much her socks made me smile?

rainbow socks

Eva was bubbly and talkative. Inquisitive of her surroundings. Similarly, they were both very much into how the treadmills go around and around. I loved watching Jasan watch her check stuff out.

Eva look

jasan watch eva

Jasan had a lot of fun watching Eva going very fast. She was smiling and laughing at the exhilaration of how she was running so quickly and then we would press STOP. Then, repeat. ūüôā

eva run!

After a bite to eat, we swam in the pool which is always fun. Eva and Jasan both love the water. The pool was a bit on the small side and was quite full of little ones, so we didn’t stay too long. We parted ways shortly after with Edward and Eva.

Jasan and I were back into hotel exploration mode. I love the feeling that I get when we are in a new environment and it is just the two of us. He holds my hand a little more often because I am his security blanket. I watch his eyes as he deciphers new information surrounding him; wide eyed and curious. Full of energy. And the sun set…

light at the end of the hall...

beautiful light.

sunset.

We ate dinner together and rode the elevator. Tons. I mean like hours worth of tons.

elevator

listening

checking it out

I am always so in love with how people react to Jasan when he is in his element. We must have seen 50 people or so that evening in the elevator. On his own he started asking people, “What floor?” and the elevator man he was. I sat there, watching in my glory to the faces of admiration about his cuteness. After we had seen the same group of women three or four times, I whispered to one of them about his autism and they smiled; as if it all made sense now in their minds.

fun in the elevator

We laughed and played elevator operator and connected in our way. I got on his level and he (without knowing) let me take photos of him. We had a complete blast.

And when the late little kid hour of 9pm rolled around and behavior started getting squirrely, we got into the cozy hotel bed and played iPad. He fell asleep in 5 mins and I fell asleep in 6. Snuggled like we love it. ‚̧

 

The sun peeked through our curtains in the morning and Jasan woke and double checked with me that we were still in Milwaukee.

heehee. ūüôā

We woke and showered and the microwave was a big hit. I am in love with this photo of him.

microwave.

and this one…

love.

and maybe another angle on the first one because I love it so much.

microwave again.

The little coffee maker?

coffee

Was a super fun thing too. We brewed many cups of water…

And then back to the elevator before breakfast. I felt like I knew everyone in the hotel from the night before!

us.

morning elevator.

listening.

I wonder what he hears in there and what the vibrations feel like to him.

squinty

This may be my favorite. The squint.

 

 

We did venture out for a short while…

beach

Visited a park on the beach.

turbine.

(this photo taken by a friend.)

And literally touched a TURBINE. This was ways cool in his mind. He LOVES turbines. Who knew Milwaukee had one you could walk up to?!?

turbine shadow.

 

And then we ventured back home. Home sweet home.

More “mph” in his hands…

wind/mph

love.

and a tuckered out little love of my life.

sleepy.

We had a wonderful Milwaukee adventure. We connected and made new memories.

We met sweet Eva…

beautiful eva

eva

I love mini getaways. I love special adventures. I love watching Jasan be Jasan. I love being his mama. I love how he told me “I love you Mama” all on his own. (4th time I’ve ever heard it from him.)

I want more. More adventures.

sock love.

 

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Waves of grieving.

This may be difficult to write.

I have to admit; I have definitely had a rough day. I am quite blessed to say that tough days where I let my emotions go down the negative path are few and far between. Today has been the exception to my positive streak. I am sure parents of special needs kids are here, where I am today, more often than not. Hence my decision to just sit and write.

I love my son more than I can even explain. I think that is why it feels so incredibly horrific when I have days like today. Days when I just give in to complete mental exhaustion. Why can’t I just have a day where I don’t feel like I am walking on eggshells? The mood swings can come out of nowhere and I some days feel like I am done with it. I am done with patience. I am done with overthinking. I am done with staying calm and looking at the bright side.

I wonder what it would be like to have him come to the grocery store with me and just comply? Or go to a movie with me and sit through the whole thing? Or be able to play like other kids do and just go be free for awhile? Or be able to handle a simplistic no? Not even a NO to something big. A NO to the smallest thing and here we go.

Mama has to tiptoe so that there is no meltdown.

I. am. so. tired.

This feels like a different stage for me. The toddler days are over. Now he is a little boy. His mind is maturing and wow things are different. Interacting with kids are different. I see how other kids AVOID him sometimes.

OUCH that hurts. A lot.

I do realize these are MY feelings, not his. I need to always put that forefront in my mind, but man, is it hard. I have bawled my eyes out driving home from friends’ homes where I thought that he would never be pushed away by the kids. Well, I was wrong. Big time.¬†I had a little guy say to me (a situation where a bunch of kids were present, and obviously the boy didn’t realize I was Jasan’s mom) “Oh, HE isn’t staying the night, is HE?” with that annoyed tone.

HEART. BROKEN.

I have to realize the situation as it is. Not everyone sees Jasan as I do. This is a new stage of grieving for me, the ideas of a little boy and the things we would do and how life would be without autism. This experience of having a child is my only one. Every stage is a learning experience, but now with autism involved. Completely different than what I imagined pregnant with a little munchkin in my womb.

But even as I sit here and write this, he is playing with water in the sink. He just said the cutest thing to me and it is words coming out of his growing up self. Adorable. Completely. I look at him and all of this bullshit washes away.

I have been practicing the mantra, “EVERYTHING ALWAYS WORKS OUT FOR ME.”

I guess I am going to add, “EVERYTHING ALWAYS WORKS OUT FOR JASAN, TOO…”

Tomorrow is a restart. No more negative. Positivity and LOVE always win and bring the best into my life experience.

So many thoughts on dating.

Honestly, I am not quite sure where to even begin this post. I have laid in bed a few nights in the past couple of weeks thinking about this topic. Of course, as I lay there in the dark as Jasan falls asleep next to me, my thoughts gather perfectly. At the end of the day when bed time rolls around for my little guy, the effort for me to stay awake after he drifts off to dreamland is usually just too much. And, alas, there goes my perfectly thought out blog post since it was all written in my mind at that moment.¬†Now I sit here with some time to write and my mind scatters…

It has been SO long since I have been in a relationship. A “do life together in each other’s daily reality” kind of situation. ¬†I am not by any means complaining about this fact. I haven’t missed it. Actually, I think it has been a very good thing for me (and for Jasan.) I can honestly say that I have had the most personal growth to date over the past year. I needed to be focused on me and how to be the best parent for Jasan. The thought of dating has not even entered my mind until recently.

The reason I am choosing to write about this here is because it is a completely different ball game when you have a child with special needs. I think dating as a single parent is challenging as it is. Bringing another person into a family situation; wow. A lot to consider. Possibly blending two separate families with children all coming together…lots of dynamics there.

Autism adds another level of complexity.

I really do not want to choose to look at this as a huge difficulty, but I do want to be realistic with my feelings. Because this is the beginning of my thought process on even starting to THINK about how it would all work, it feels overwhelming. I have moments where I feel excited about the dreamy picture in my mind of my ideal situation. As I work through this, that is where I want to choose to keep the majority of my thoughts. But, there are a few kinks to think through first.

I love my life. I love my son. I love my family. I have chosen to live with my mom and my stepfather, and we have since Jasan was one. He is almost 6. It started out to be for financial reasons because of the break up with his father, but as time has gone on challenges with autism have kept us here with family. It has been beyond necessary for someone else besides me to know Jasan through and through. The only way for that fully to be accomplished is to live with him.

Jasan 2015

My mom and I have a great relationship. We have pretty much partnered in raising Jasan because she is so helpful to me.¬†When I say helpful, I do not mean babysitting when I want her to so that I can go out with girlfriends. I mean the day-to-day activities that she helps me with. For example, she knows our routines. On Jasan’s school mornings she takes it upon herself to wake at a certain time so that she starts breakfast for him. We live in the downstairs part¬†of the home, so when we meander upstairs she is cooking away. This is extremely helpful for me. Mornings can be smooth as silk, or extremely difficult. On the days when we are running late due to transition meltdowns, I know it is vital to get food into his stomach or he won’t be able to handle anything at school…but we also have to get out to the bus on time! Not to mention, I need to get to work on time…it can be pretty tricky sometimes. Through it all, I need to stay as calm as possible to keep things moving along. To have her there as my backup picking up slack is huge. HUGE!

There are many examples I could give that show how helpful “Grammie” is. But, Grammie and Grampie (my stepdad Matt, who works many hours) also have their own busy lives. The three of us are the ones on this earth that know Jasan best. Because he has grown up living with his grandparents, they are hugely influential in his life. What a blessing this is! I feel it is extremely imperative that he has someone besides just me who “gets” him.

Jasan

I have my couple evenings a month where I have things scheduled that I am involved in. If I am out late, which is not often, my mom is the only other person that can put Jasan to bed. Parents that can just call any babysitter so that they can go out for an evening don’t even begin to realize how fabulous they have it. That does not exist in my world.¬†So, with the little bit that I have explained, where the heck does going out on dates fit in to this situation? She sacrifices a lot for me. Unless she had no life of her own and only lived to hang out with her grandson, it’s going to be slightly challenging.

The dynamic between Jasan and me takes most of my energy. As he gets older life has gotten more interesting, but also more difficult. At this point in my life I know what I want. I know that I have the power to choosy when it comes to what and who I let into our lives. Would it be easier to not create more emotional (possible) drama for myself? Maybe. But, I do believe that as time goes on we expand. We have desires and dreams that grow our thoughts. If we don’t keep up with them, that is when life begins to lose its luster. My hunch is that this is part of my expansion. This is why these visions of a partner in my life are coming to me. I need to be open and willing to roll with it.

I know there is a man out there that will love, accept and understand Jasan as if he were his own (and be crazy in love with me as well.) I believe this. I have all the patience in the world and I know that he will show up in my reality somehow when the universe beautifully sets it up to be so. If I choose to start opening up my mind to this idea of relationship with all of this worry and fret, he will not come. If I let my walls come down and trust that everything will work out, guess what?

It will. ‚̧

I had planned to do a lot more writing about details on the difficulties. I kinda like how this post took a turn for the positively hopeful! I think I’ll stay here.

us

lol

be YOU tiful

me.

Numbers & Letters…

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Jasan loves numbers.

And letters.

He has been sounding out words and reading since he was 2 1/2. He loves watching shows like Wheel of Fortune, Family Feud, and plays Bingo with me because of the numbers and words attraction.

I decided that I would start an on going numbers and letters photo series for him…

photo 3

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I am having fun with it… these are just a few. Someday I will do something cool with them all and gift it to him.

Maybe on Valentine’s Day. ‚̧

 

Autism Series Exhibit.

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WHAT? “Following Jasan” Autism Series Photo Exhibit

WHEN? Friday, October 24, 2014… 6-10 pm

WHERE? 4th Fridays at the Starline Gallery 2014 Finale Show

http://www.nancymerkling.com/4th-fridays-at-the-starline/

Hope to see some of  you there!

Our life.

I am really getting used to just doing our own thing wherever we are. Sometimes being self-conscious will still creep up on me, but mostly, I OWN IT. As Jasan gets older, I appreciate who he is becoming even more. I keep reminding myself to step back and look at the big picture. I may not totally understand everything now. But, I picture myself looking back at his life when he is in his twenties and it all making sense. Why does he have an obsession with appliances? What is it about fahrenheit and barometric pressure that makes him smile so much? Why does my son prefer Best Buy over Toys R Us? I don’t know, but I’m his biggest cheerleader.

We hung out at good old Best Buy for quite awhile today.

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Refrigerators were a hit.

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There will always be the beloved washing machine.

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And now, the most recent addition to fun spots to go in Best Buy? The printer aisle. We had a lot of fun with sound effects and powering multiple different models on and off.

On a BUSY Saturday afternoon was I spotted taking pictures of my son LOVING on appliances from many WEIRD angles?

Yep.

Did I care?

Nope.

Did a million Best Buy employees come ask us if we needed help?

Yep.

Did they look at me weird when I said my son likes to hang out by the washing machines and we are just pushing buttons and listening to sounds?

Yep.

Am I cool with all of this?

Yep.

It’s our life.

I LOVE IT.

Sounds.

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We have now entered a new level of sensory awareness. Both of us.

In the past month or so, Jasan has been having a really hard time with sounds. (Hence the noise reducing headphones.) It doesn’t even matter if they are loud…or if he has heard them before and knows what to expect.

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At first I was¬†confused. Why, all of the sudden, was he having a hard time flushing the toilet in our house? He has heard that sound a million times. At my friend’s home where the beloved washer & dryer Whirlpool Duet lives (see this past post) the sounds are now a startling issue. He has literally spent hours in that room watching the cycles and has every sound perfectly memorized and can mimic the machine¬†flawlessly. What’s going on with my little man?

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Well, he’s growing up. His awareness of the world is heightening. And so is mine. This is something that all parents of children with special needs can relate to. I need to overthink life when we are together. While he is at this young age, I am his protector. I am his hand to hold when things get too loud or surprisingly startling or too bright or too dark or too wet or too smelly…should I keep going?

Things that neurotypical kids regulate without even knowing, our “sensory sensitive” kids don’t. There is a lot going on that I don’t understand, but you know what? I KNOW MY SON. I can learn his patterns and his fears, I can look ahead to foresee possible issues and help avoid or lessen them. This is part of my passion as his mom. His life can be just as comfortable as mine, it will just look a bit different.

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Through this journey with Jasan I have become more patient. More kind. More understanding. More compassionate.

You never know what another person’s reality is.

 

 

A little about mama.

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Photographer: Amber Benson

It has been way too long since my last blog post. When this happens, I realize that I have become slightly derailed emotionally. When I am on a good path of staying focused on the positive and doing what is best for Jasan and me, these posts flow right out of me. Ideas come and immediately I want to write. I love that feeling, and it is proof that this project is supposed to be happening.

A lot of good has come from sharing my series on Jasan. Before making the decision to even call these photographs a series, I prayed about it. I was also quiet and let myself be open to feel a yes or a no. I discussed it with a couple of very close friends to get their opinions, and the overwhelming “yes!” was seeming apparent from all directions. The more I started to share little bits and pieces of our life together as mother & son, the more personal the words became.

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Photographer: George Allen

What I am most loving about this blog is that it really all revolves around my emotional awareness and health. It’s all a part of my journey of going inward, becoming more emotionally aware and realizing how it’s forming a new version of me. Of course this directly affects my parenting. I could not be more thankful for this process and how it is really strengthening my relationship with my son and everyone around me.

My mother (who is a huge inspirational influence on me) gave me a little notecard to read about a week ago. When I started thinking about this post, I realized how well this fits together. This is what it says:

The child is thinking on the day it enters your environment.

And so beliefs are easily transmitted from adults to children…

The child is vibrationally receiving your fears and your beliefs even without your spoken word.

So give thought only to that which you want, and your child will receive from you only the vibration of those wanted thoughts.

Read that a few times and think about how PROFOUND that is.

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Now, it is not always easy to have positive thoughts 24-7. We aren’t perfect humans, and life happens. Focusing on the positive takes practice. Lots of practice. And AWARENESS. Being aware of your thoughts is huge. We all have a power that many of us don’t utilize. We all have the CHOICE to pick and choose our thoughts which will then in turn determine what vibrational energy we create.

Because Jasan and I are a little twosome, our relationship is EXTREMELY close. I do not have a partner yet in my life journey, and I do not have any other children that I need to pour energy into. Just Jasan. Therefore, we are almost like one at times. ‚̧ On the flip side, he feels EVERYTHING that’s going on with me. If my head isn’t right, he knows. Even in his 4 year old world.

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Because Jasan is autistic, I think his level of awareness is heightened. He is so in tune with me it’s kinda crazy awesome. When I let my mind soak this in, I feel an ever greater need to continue my journey to emotional health for his sake, as well as mine. The stronger I become, the better it is for both of us. I think being able to look inside of me has quieted my thoughts enough to become more grateful of what is around me. All of these photos that I take of Jasan reflect just that. Being in the moment. Instead of being busy in my mind with all of the junk that I used to choose to focus on, I CAN be in the moment. After learning more about who I am and why I used to make the unhealthy choices that I did, thought patterns can be made new. Old behaviors can melt away (with a little practice of course…) but it’s all in my mind. It’s MY CHOICE and MY WORK. It doesn’t just happen.

We can all make it happen. For us as individuals, and AS PARENTS for OUR CHILDREN. They deserve it. Our healthy attitude. Our positive vibration. They feel all of it.

Just for fun, I went through some pre-autism series photos. (a.k.a. Mama & Jasan selfies…mostly. ha)

Thought I would share some with you!

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Oh how I love him! ‚̧

 

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…

temple lecture blur

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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