We’ve had some extra challenging moments these last few weeks and I needed to remind Griffin that no matter what he’s still my sunshine.
We’ve had some extra challenging moments these last few weeks and I needed to remind Griffin that no matter what he’s still my sunshine.
Tonight at dinner:
Griffin: “Mom, I think I have phobophobia”
Me: “What in the world is that?”
Griffin: “It’s the fear of having a fear”
Me: “What are you afraid of?”
Griffin: ” I’m afraid to try dinner. I’m afraid I won’t like it. I’m afraid of being afraid of being afraid to try dinner”
I give Griffin credit, after some encouragement he did try dinner. He then told me after taking only a few bites that he was full. He’s always trying to break it to me gently when he doesn’t like something I make but this takes the cake.
Cake, maybe that’s what I’ll try making next…
In honor of Martin Luther King Jr’s birthday I wanted to share this short, VERY Griffin conversation I had with him this past summer.
We were hiking through Yellowstone National Park, when out of the blue…
Griffin says, “Martin Luther King Jr. should have been President.”
“I agree,” I said, “I think he would have made a great president, but there were people back then and there are even people now that wouldn’t have accepted him as president”
” Well those people are butt-holes!”
And with that, we say Happy Birthday Mr. Martin Luther King Jr.!
With my mom and Griffin’s permission, I wanted to share this note Griffin wrote for her on her recent visit with us.
For years my mom and I have written each other notes and then hid them in the other one’s luggage or home to be read once we said goodbye. I love how Griffin is now part of this, it makes the goodbyes a little easier!
Griffin’s note to his Grandma, I love the details! (Click on it to read what he wrote)
This is a post that has been in the making since last March, at this point I could probably write a book about how special the people are that work at Level 257. I tried my best to capture just how special they are to my family.
Griffin’s birthday dinner, it was Nom, Nom good! That huge glass of wine wasn’t bad either!
Griffin’s had a fever for as long as I can remember. It came on so quickly and hasn’t gone away. Then Tom and I got the fever the beginning of this year. Yes, now we all have Pac-Man fever. Our temperatures were at the highest when we discovered that a Pac-Man inspired restaurant and arcade was being built just outside of Chicago. If you’ve ever had a conversation with our son Griffin, you soon discover how much he LOVES Pac-man and many other retro video games. We have even dressed as the Pac-Family for Halloween. So when we started hearing about the restaurant I decided to reach out to the marketing manager, Natalie, to see if we could be part of the grand opening. Part of my letter read:
“I’m writing on behalf of my 11 year old son, Griffin. He is on the Autism spectrum with an Aspergers diagnosis. With this comes passion for many things including Pac-man and other classic arcade games. We just found out about the Pac-man inspired restaurant opening next month in Schaumburg, IL and wanted to know if there was any way he could be part of the grand opening. He is a great kid and I know that we will be visiting often, but we would like to surprise him with his first visit. He has actually talked about having his own Pac-man restaurant and he strives to be a video game designer when he grows up.”
I immediately received a reply from the restaurant’s marketing manager, Natalie saying that although they weren’t having an official grand opening they would love to make Griffin a VIP when he came for his first visit.
We planned to take him for his birthday in April. Admittedly, it was tough to keep it secret from Griffin for so long. At one point my mom actually slipped but I was able to cover. Not being able to take it any longer we moved up the surprise visit to the end of March.
This is video we shot of the big surprise!
When they said VIP, they meant it! I had asked if there was any way we could have an earlier reservation to avoid it being too crowded and noisy for Griffin, and they happily took care of it. There was even a surprise visit from Pac-Man himself and they had special Pac-Man treats just for Griffin. But the most special moment for me was when David, Executive Vice President of Namco, came over and spent time talking to Griffin about all things Pac-Man. To see Griffin talking to someone in the industry was so special and Griffin surprised David with just how much he knew about Pac-Man.
Griffin and The Pacster!
After that first visit we knew we had found a home away from home. Each time we went back we were always greeted with a smile, and the staff would go out of their way to make sure Griffin felt special and had a great time. I really can’t explain how much the care and attention meant to us. The three of us are just so grateful every time we get to visit Level 257.
On our way to Pac-Man’s Birthday Party
Fast forward to May of this year, where we were able to attend the 35th Anniversary/Birthday of the creation of Pac-Man. It was really exciting and Griffin got to meet the lead creator of the game, Professor Toru Iwatoni. He was so in his element once again and he even decided to wear his Pac-Man Jr costume. He was almost as popular as Pac-Man himself that night! Griffin was able to meet more people in the industry, including a game designer named Ben from Namco. Ben encouraged us to email him so he could stay connected and has since suggested video game design books and programs for Griffin to look into. He also shared with me that he has family members that are also on the autism spectrum.
Griffin meeting Professor Toru Iwatoni while wearing his Pac-Man Jr costume. If you’ve seen the movie “Pixels” you’ll recognize that there is a similar scene where the Professor’s character has a similar interaction with Pac-Man.
We continue to visit Level 257, it’s become a great reward for Griffin to work towards. Each time we go my heart is filled with love and appreciation for the staff, especially Natalie and David. I always send them an email letting them know we’re coming in hopes that we can see them. This last visit David stayed late just so he could visit with Griffin. I was once again overcome with emotion and non-eloquently tried to tell him how much it all meant to me. David just smiled and told me to stop it, that it was nothing. He wanted to make sure he got to visit with us since he wasn’t able to the last time we’d been there.
With permission from both Natalie and David I wanted to share these emails they sent me. It gives you insight into how great they are. I received these email responses from them after we had planned on going for a visit but couldn’t because Griffin had been having a hard time. In my email explaining this, I added that I never wanted either of them to feel obligated to come by if they couldn’t, especially since we try to go as often as we can.
This is what David wrote:
“We don’t feel “obligated” – honestly, Griffin has been a special part of our working on Level 257, and I feel like he’s now a part of our project development! We’ve always enjoyed speaking with him, and (admittedly on a selfish level), Griffin reminds me of WHY we do the things we do; his honest and sincere appreciation makes all the work and effort worthwhile! Griffin is a great guy (and he has some pretty special parents!)”
Griffin and his buddy David
Natalie wrote :
“Selfishly, I’m glad that I didn’t miss you guys! David and I just adore Griffin – he is one of the family here! I feel incredibly blessed to have come to know Griffin, and you, and just love that he enjoys coming to 257 so much. So, to echo David, it’s never an ‘obligation’ for us.”
Griffin with the lovely Natalie
I want David, Natalie, and the entire staff of Level 257 to know that visiting the restaurant is so much more then a family outing. It’s become a reminder that people care and an opportunity for Griffin and us to connect with others. It’s proof that even though autism can be confusing there are people waiting with open arms to learn more about it, welcome you, and support you.
I wanted to share this special moment Griffin had with our friend Chuck from the “Y” last month. It’s especially important because of all the things going on in our world and a reminder that even small acts of kindness can bring about big change. We have been very blessed to have so many random and not so random acts of kindness come our way. I love that Griffin is getting the chance to experience the impact his kindness can bring to others.
First assignment: Give people at the “Y” a high five and a smile
Chuck talking more to Griffin about what random acts of kindness is all about
Free coffee for everyone!
Since this is Thanksgiving week I thought I’d share a new skill Griffin learned last Friday. What makes it extra special is that he learned it from Tiffany, one of the lifeguards at our “Y.” She was on break and took the time to show and encourage Griffin. I continue to be so thankful for everyone at the “Y” that takes the time to connect with Griffin. When we went back to the “Y” this past Monday I was able to record him flipping out, in a good way! When I see him doing something physical like this, it brings me back to when he was over two years old and still not walking. How much we worried and then finally getting the hypotonia diagnosis. Hypotonia is low muscle tone often involving reduced muscle strength. To see his joy and confidence grow is another gift I’m truly thankful for!
Every few months Griffin has an appointment downtown. From the very beginning we would make a day of it, going to the local playground and stopping by the Disney Store nearby. On our first visit to the store we met Lena, a cast member who we just instantly connected with. She took her time talking to Griffin and really seemed to get him. Lena made an impression on both of us and we think she’s the best! I always text Lena to let her know when Griffin’s next appointment is so we can make a point to see each other if possible. We’ve been friends now for about a year and seeing her always makes our day.
Lena and Griffin
Today Griffin had another appointment downtown. He was having a hard time on our way to the appointment and I wasn’t sure if things would get better. But we stuck to our plans and made our usual visit to the Disney Store. As soon as we walked into the store we were greeted by Lena and her beautiful smile.
As I was talking to Lena, Griffin asked if he could go look at the Frozen toys. There is a book there that he likes to read every time we are there. I caught him out of the corner of my eye asking one of the cast members for help when he couldn’t find the book. The fact that he was being independent and asking for help alone was pretty cool but then when I got to him I was really blown away.
Jess, the woman that was helping Griffin, was on the floor reading to him. She had helped him find the book he was looking for and then offered to read to him while he read silently from the same book. Jess was so sweet and spent a good amount of time with him. With her permission I captured the moment and wanted to share it with all of you. I told her that, in my opinion, we need to see and share more moments like these. My family has been very fortunate to have moments like this to cherish and share.
Our new friend Jess reading to Griffin
Thank you Lena and Jess for making our day better and brighter!
I have felt a connection to Monica Potter from the first moment I saw her portray Kristina Braverman on the television show Parenthood. I could easily identify with her character, a mother who has a child with special needs, and more specifically a child with an Aspergers diagnosis. That storyline was a lifeline for my family. As my son gets older and watches the scenes with Max, the character that has the Aspergers diagnosis, it has also become a way for Griffin to know he is not alone.
When the show ended we, like so many, felt the loss. Here our family was being represented by wonderful writing and an amazingly talented group of actors. This show helped start a conversation about what life was like for us and it showed us what was possible for Griffin. I had already become a fan of Monica’s Facebook page which helped me continue to feel connected to her. It was great to see how wonderful she was in real life and to find out about her up-coming projects . One of those projects was opening a retail store near her hometown of Cleveland, Ohio. She wanted to offer her customers quality home goods that were made by local artisans and craftspeople.
Here I am with one of my Monica Potter Home candles, a very sad face, and a huge glass of wine watching one of the final episodes of “Parenthood.”
As soon as I heard about the opening of the store I mentioned it to my husband. “You know we have to visit.” I became like a child in a car who asks “Are we there yet? Are we there yet?” only my repeated phrase was “When can we go? When can we go?” Finally this past summer we planned a road trip to Cleveland so we could visit the store and go hiking at Cuyahoga Valley National Park.
The day we went to the store was pretty exciting for me but it quickly turned into worry. You see, Griffin was hoping that we would actually get a chance to meet Monica. I prepared him by telling him that she wouldn’t be there this time but that it was still really cool that we were getting to go to the store. As we started to get out of the car, I again reminded him that she wouldn’t be there. His response: “Mom, don’t jinx it!” He wasn’t getting it and I was really worried. I then explained to him by saying, “Listen, this is really important to me. I’ve been looking forward to this for a while. If you think this is going to be too much, you should stay in the car with your dad.” I mentioned that the store sold candles and that we could check them out if he wanted to. “Ok mom. I want to come with you,” he called out.
As soon as we walked into the store he was calm. We went around and smelled the different candles and spotted some items that had owls on them. One of our close family friends loves owls so seeing the owls provided a good distraction. Thank you owls!
The three of us sitting on the store’s front porch.
When we got to the register and started checking out, Griffin mentioned the candles we had seen and smelled. Stephanie, who actually makes the candles for Monica, offered to show him where and how the candles were made. As the two of them started to walk away, Christine (another employee) asked me if I was ok with him going with her and if I wanted to go too. I joked, “I’m ok if she’s ok. This is like a little break for me.” I mentioned that Griffin was on the autism spectrum and that he has an Aspergers diagnosis. Before I knew it, I started to feel tears in my eyes. I started crying partly because I felt bad about making a joke and because I had been so worried Griffin would have a hard time not being able to see Monica. The next thing I knew Christine came from behind the counter and gave me a hug and said a blessing. I was so overwhelmed by how emotional I got and by this complete stranger’s kindness. I turned back to the other customers in line behind me to apologize for holding up the line and they were all so sweet too.
Griffin came back just as we were finishing up. He mentioned our friend and how she loves owls and that the owl items we were buying were for her. That’s when Stephanie gifted him this beautiful wooden owl postcard. It was really beautiful. Griffin was so grateful and asked excitedly, “You’re giving this to me for free?” I honestly couldn’t have imagined the visit being any more perfect, except of course if Monica had been there!
Griffin and I standing in front of the Monica Potter Home store sign. We’re wearing his “Pick 2 Flowers with 1 Hand” shirt that he designed.
When we got home Griffin made thank-you cards for Christine and Stephanie. To our surprise a couple of weeks later, Stephanie replied back suggesting they become pen-pals. Griffin is really enjoying writing to Stephanie and her letters put a smile on both of our faces.
We just returned from our second visit to the store and it was even better than the first, if that’s even possible! Stephanie and Griffin were so happy to see each other. He even brought her a painting he made for her. It was nice for Tom and I too. We got to get to know Stephanie a little more and meet two other wonderful staff members, Brian and Jennifer. Griffin was feeling more comfortable and expressed himself in a way only he can, and Stephanie didn’t seemed phased at all. When he asked if he could put the bracelets that were on display in rainbow color order, she encouraged it and completely understood. That meant so much to Griffin and to me and Tom.
This is Griffin and Stephanie on our most recent visit to the store. They were both so happy to see each other!
Monica, we look forward to many more visits to your store and we can not wait to meet you in person! We think the world of you and the community that you have created with Monica Potter Home. Thank you for giving us wonderful memories and for being an example of how kind and loving the world really is. We wish you and your entire staff continued success.
xo, Missy, Tom, and Griffin
The other day at the playground Griffin looked over at a group of boys who were playing and said “I think I want to go over to those boys and see what they’re doing.” Even though Griffin is generally very social, when it comes to talking to kids he doesn’t know he’ll often times just keep to himself.
As I watched Griffin walk over to them, I hoped that the boys would be friendly and that Griffin would continue to feel confident approaching them. All of the sudden he stopped and hid behind a lamp post. I watched as he peeked out from behind the post and then come back over to me. I thought Oh no, Ok, he just needs a minute. He’ll be alright, maybe he wants me to go over with him. To my surprise he said “Mom can I have my sunglasses? One of the kids likes MineCraft because he has a MineCraft shirt on. I think since my glasses are MineCraft it might help with starting a conversation.” WOW, is all I could think, WOW!
Griffin is constantly reminding us just how much he is learning in regards to social situations. It’s moments like this that offer so much encouragement and show that his hard work is paying off.
Oh and the boys were very nice! We even stayed longer than we planned!