Flexibility= A Teaching Moment For G and a New Ukulele For Me!

The other week we were at an appointment near our house. We rode the train there but it was such a beautiful day that I suggested we walk home. Griffin was fine with that and away we went.

As we walked we passed a music shop and Griffin asked if we could go in. I was feeling tired and sweating like a champ but I said “yes” and in we went. As we looked around I noticed a sheet that was promoting a contest to win a ukulele. All you had to do was sign your name and leave your email to enter the contest. There were no other names on it so I wasn’t sure if it was still going on but I signed my name anyway.

We left shortly after and I didn’t give winning the ukulele another thought.

The following evening I received a message that I had won the ukulele. This was just the boost I needed to get back to playing. I haven’t been playing my ukulele for awhile for many reasons, more on that to come later.

Flexibility is a challenge for Griffin. As with many moments we encounter, I took this as an opportunity to share with Griffin the importance of being flexible.

I told Griffin that if he hadn’t have been flexible with walking instead of taking the train, we wouldn’t have walked pass the music shop. If I hadn’t been flexible about going into the shop and instead just went straight home I wouldn’t have seen the contest to win a new ukulele and I wouldn’t have had the chance to win it.

A lot of change is happening for us this coming fall. I hope that not only Griffin can be flexible but that I can be as well. I hope that we can trust in the changes and in ourselves.

You Just Never Know

This morning as I was riding the bus to an appointment, I noticed a young man get on the bus. Closely behind him was a woman who appeared to be his therapist or aide.

The two of them approached me and the woman directed the young man to sit next to me. At one point he asked her what their stop was. She gave him a clue that the stop started with an “R” and then he said Roosevelt which just happened to be the stop I was also getting off at. I glanced over at her and gave her a smile.

I immediately started tearing up. I was thinking about Griffin and the work his therapists do with him, including working on taking the bus and train. I was thinking of this boy’s parents, imagining all that we had in common. How many nights had they stayed awake wondering if their child would be independent? How many nights had they stayed awake worrying if they would be able to find amazing people to work with their son, people that would treat him with the respect and patience he deserved?

I thought about this young man, trying to navigate the world. What does the world sound and look like to him? I thought about how he was learning to ride a bus, a skill that many people often take for granted.

I thought about this therapist and the work she was doing. As they started to get off the bus she showed him how to pull the wire down to signal to the bus driver that they wanted to get off. She then showed him how to push on the doors so they would open. She was very patient with him.

As we got off the bus I wanted to say something but I was going in a different direction. If I had had the chance I would have shared some of my story with her and I would have thanked her for doing the job she was doing.

This moment reminded me that you never know what someone else is going through. You never know just how much you might have in common with them. I’m grateful to have had this reminder today.

I Wish Things Could Be Less Complicated

There are some days, like today, when it really hits me. I wish it didn’t have to be so complicated.

In an effort to better understand Griffin and his behaviors his therapist wants me to fill out this sheet every time a behavior occurs. I’m to list what happens before the behavior, the behavior, and then whatever consequence he has after the behavior. This all makes perfect sense. I’m just trying to sort through my feelings of guilt, self-doubt, and just plain exhaustion. I’m trying to embrace where we’re at in this moment.

I wouldn’t change Griffin for the world. I just wish I was better at being his mom. I wish it could be easier, even for a moment. I wish I didn’t live in fear and self-doubt. I wish I knew that it would all work out.

I Got A Call From Griffin’s Camp

I got a call from Griffin’s camp this morning. I didn’t answer because I didn’t recognize the number, so they left a message saying to call them back. I immediately panicked thinking he was hurt or that he was having a meltdown. Turns out he had just forgotten to tell me he needed money to go to the movies. I almost started crying when the counselor told me. I’ve never been happier to drop what I was doing to go and bring him the money he needed. It reminded me of this song I wrote that was inspired by the calls I would get when Griffin was in traditional school. I wanted to re-share it with all of you.

Life Imitating Art, Sort Of

The other day Griffin was watching “Full House”, one of his favorite shows. The episode was about Michele and how she started to become embarrassed when Danny would kiss her when he dropped her off at school.

I thought “Geez what is she 6 or 7?” That seemed too young to be embarrassed by your parent kissing you in public.

Fast forward to today. Tom walked with me to drop Griffin off at camp. Griffin picked up his camp shirt that every camper must wear when going on a field trip. As soon as Griffin put the shirt on I noticed a hair on him and tried to remove it. It was at the same time that we were walking over to Griffin’s group. Griffin wanted to introduce Tom to his new camp friends. We stood there for a moment but Griffin couldn’t find the two friends. Tom then motioned to me to leave.

We said our goodbyes and then on his own Griffin gave each of us a kiss and hug.

As we walked back home Tom suggested that maybe I should think about how I am with Griffin when he’s around his friends. “What do you mean?” I asked thinking it was about the kiss. “He wanted to kiss us, who cares what anyone thinks.” “No Missy, I’m not talking about that. You started fixing his hair. I know Griffin isn’t aware or even cares but we should both start thinking about things like that, how we still baby him without meaning to” Tom explained.

Even if it’s not easy to hear, I always appreciate it when Tom see’s things I might not. I immediately understood what he was saying and started obsessing over if his friends saw me doing that and if they would tease him. “No I don’t think they noticed, that’s why I signaled for you to say goodbye” Tom answered.

As Griffin gets older it definitely is becoming more of a challenge figuring out where I fit in. He’s so affectionate and isn’t easily aware of things that might potentially be embarrassing for a teenager.

As his mom, since he might not pull away when it comes to certain situations, I find myself having to, which is really difficult.

I’m going to try to be more aware of how I interact with Griffin and stop myself when I reach for his hair. I have to remind myself that independence is what it’s all about not what his hair looks like.

But the kisses, well as long as he’s the one wanting to give them and doesn’t care what others think, well those we’ll keep.

Something So Simple

Today when I pick Griffin up from camp I will also be picking up one of his friends. The two of them will come back to our house and Griffin’s friend will stay and have dinner with us.

Why am I telling you this, what’s the big deal?

Well even though Griffin is a teenager and a very sweet kid, this has never happened. Sure we’ve gotten together with family friends in the past but this simple act of me picking Griffin and his friend up and then having his friend stay over for dinner is something that has never happened. It’s wonderful and a cause for us to celebrate.

It’s moments like this, moments that I’m sure I would take for granted if our lives were different, that have me beaming with joy.

A simple moment is never simple in our family and for that I am truly grateful!

Griffin Leading The Way

Today is the first day of camp for Griffin. A few days before he started I told him that I was going to miss him and he replied “You’re going to have to not get attached to me.” Um, too late.

When Griffin woke up this morning he told me he had a great idea. “When it’s time for me to introduce myself at camp, I’m going to tell everyone about my ASD. I’m going to let them know that if they have any questions they can ask me.” I reminded him that it was up to him to decide if and when he wanted to share this information. And that I thought it was wonderful that he decided to share this part of himself with people he was meeting for the first time.

I also reminded him that his Aspergers wasn’t an excuse to not do things. That his Aspergers allows him to see and experience the world differently than others do. That it helps explain his needs and that he can do anything anyone else can do, he just may need help and tools.

I’m proud of Griffin for being confident in who he is and for wanting to help others understand ASD. The light in his eyes reminds me that for us sharing our story is what we are meant to do. Griffin is choosing for himself to be an advocate and educator. I couldn’t be prouder!

Griffin’s Great Big Heart

I wanted to share a couple of moments I captured that express the kind, loving, and sensitive soul that is Griffin.

The video below is of Griffin saying goodbye to a bug he thought was a ladybug. The bug was no longer alive so he took it out to place in one of our plants.

The audio is weird but if you listen carefully you will hear Griffin say
“If you’re on one of these leaves, I just want you to know that you’ve given me such joy having you. I love you.”

Recently we found a ladybug in our house. Griffin believed the ladybug, who he named Ledian after a Pokemon was the original bug he found that had died. She died today so he buried her once again.

Count yourself very lucky if you are loved by Griffin 🙂

Really, Just Like Me??!!

We met an amazing young man today who also has an Aspergers diagnosis. I hope to write more about our encounter with him in the future. But as always before I write about someone, I want to make sure I get his permission.

The main thing I can share with all of you is that when I told Griffin this young man also had Aspergers, Griffin’s face lit up and he said “Really, he has Aspergers, just like me?”
Griffin was so happy to meet someone just like him. I was so grateful to meet this amazing young man who took the time to hang out with Griffin.

Lately I’ve been going through some very personal things that have had me in tears. I’m happy to report that today my tears were joy filled!

Change Is Gonna Do Us Good

Griffin is set to start summer camp soon. This year he will be in a teen camp where he will learn skills to be a counselor in training at the “Y.” There have been some changes to the youth program, including the hiring of a new youth director.

When I heard about the change I became really nervous and concerned. The last director was amazing and worked with Griffin’s therapists to ensure his success in both the after-school and summer camp program he attended last summer. Would the new director be just as amazing? My anxiety started up. Change is never easy.

When we start a new program or someone new is involved I make a point to meet with them so they can ask questions and we can ask them questions as well.

Griffin was also worried that the new director might not understand him. So I reached out to her and set up a meeting to ease both of our minds.

But I wasn’t prepared for what the new director, Liz would say upon meeting us.

After greeting us she said “My brother also has Aspergers.” My face lit up. My heart became lighter.

Over the course of our conversation she shared with us things about her brother, how he was in college studying to be a gunsmith. She seemed to appreciate it when Griffin told her how some people melt guns down to make art.

At one point she handed him a sparkly fabric ball. She told him how she likes to hide them for people to find. She then handed him another ball to share with someone else. He asked her if she had a purple one and then gave it to me because purple is my favorite color.

Griffin shared his concerns about camp like “What if someone says a word I don’t like or I hear a song I don’t like?” We both let him know that the counselors would be there to help. I told him if he thought of anything else we could reach back out to Liz. He then left to go swim.

I took a final moment once he left to share that one of Griffin’s challenges is cursing to express his anger or frustration but that thankfully it hasn’t been an issue at the “Y.” I then expressed one of my biggest concerns. I shared how I often explain that Griffin is anywhere from 4-44 years old, it just depends on the situation.

I told her he’s 14 most of the time but that I wanted the counselors to understand that he still was developmentally younger other times. I explained that his ADHD might create a situation where he could loose concentration and possibly not keep up with the group. She told me she would talk to the head of his group and told me who it was so I could also speak with them.

Towards the end of our conversation I said something like “And that’s Griffin. He’s a great kid.” She replied “He really is.” I shared how I didn’t think of Griffin as being disabled. Liz added that people with Aspergers often have many talents and with that some deficiencies. “They’re just a heightened version of neurotypical people. We all have things we’re good at and things we need to work on” I added.

I’m not going to lie and say that all my worries are gone. What I will say is I feel extremely grateful that Liz was hired and that she really understands the world we live in. I can’t wait to see how much Griffin grows at camp.

I’m happy and scared to have an opportunity to invite new people into our world.