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.

C307, For The Love Of Pete, Please Call C307!!

On Monday we had to go to the DMV. I recently lost my wallet so I needed a new license and Griffin had to get a state ID. Not the greatest way to start the week but it had to be done.

My number was called in a fairly decent amount of time. Tom waited with Griffin to hear for his number. When I came back Griffin’s number, C307 still hadn’t been called. He was handling the wait really well thanks to some cool books he received for his birthday. At some point the computer system to call the numbers froze, this is where I think the problem with Griffin’s number occurred.

While we waited a nice woman with a beautiful Tennessee accent came and sat down beside me. Her name was Angie. The DMV decided to take special care of anyone 65 and over due to the system freezing, so they asked for anyone 65 and over to come out of the line. Angie mentioned how she wouldn’t be able to take advantage of this nice offer because she wasn’t here for herself. She was here with her grandson who was waiting in line to renew his license. I thought it was so sweet that she was keeping him company. She then said that it was important that her grandson handle this on his own. Angie added that he was 21 and had Aspergers. My face lit up and said “so does my son!”

We proceeded to talk and then her grandson, John came by and sat down next to her. He spoke so kindly to his grandmother. She shared with me that she had helped raise John and that he loved hanging out with her. His other set of grandparents had passed away and he wanted to make sure he got to spend time with her. It sounded like something Griffin would do. I asked her if John would be comfortable with me knowing he had Aspergers and if he would want to talk to Griffin. She said yes and then mentioned to John that Griffin had Asperger too. Griffin’s first question for John was “Do you like video games?” He answered “Yes.” He had a job where he fixed video games and consoles. Griffin thought that was the greatest! John asked if we had ever been to this video game store/arcade. When we said we didn’t think so, he looked it up on his phone. The two of them continued to talk. I didn’t want this moment to end. Ok maybe just a little but only because we had been waiting a long time!

I quickly wrote down my information and gave it to Angie. It was obvious John would be a great person for Griffin to get to know. When I handed the paper to her she smiled and gave me her phone number. She told me she would give my information to her daughter.

I told Angie that I believed in God and that not hearing Griffin’s number and having to wait longer happened because we were meant to meet her and John. She could have chosen to sit somewhere else but instead she sat right next to me and started talking. I hope I remember this moment the next time I start to get impatient while waiting.

Thank you Angie and John for making our wait worth it!

Happy 14th Birthday, Griffin!

Griffin, I can’t believe it’s been 14 years since you entered the world.

I remember that day so clearly….

My first contraction came on a beautiful, sunny Wednesday around 9am.
I remember “Guiding Light” was on the television. Around 11am my doulas, both named Stacy arrived, this was really happening! We went for a walk around our neighborhood to help with the labor. Every few steps I’d have to take a minute to lean on a tree. Looking at the spring flowers and imagining taking you for walks on the same street helped ease some of the pain and worrying I had. At some point your dad went into the kitchen to make pasta for everyone, you know how your dad loves to cook! It was around 6pm when we made our way to the Hospital.

I had planned to give birth to you in a birthing tub but decided to stay in the bed. Your dad and the two Stacys offered much needed support. Our two midwives, JoAnne and Donna were the best and made sure we had everything we needed. Before we knew it you were ready to come join the party.

You were born that evening at 10:34pm. But as soon as you were placed in my arms you were taken to the Neonatal Intensive Care Unit. Because of your size, you were almost nine pounds, and how fast you came out, you had developed Hypoglycemia, low blood sugar. The doctor placed you on an iv to get your sugar levels up. You had to stay an additional two days after I was discharged. It was so hard leaving you at the hospital. I went to see you in the nursery every chance I could. Your dad came to almost every feeding to make sure you were ok.

Finally you were able to come home Sunday, May 4th and we couldn’t have been happier.

Before we knew it a year went by and then two. You were a happy baby. You loved to sing and put puzzles together. But you still weren’t walking. We took you to various specialists who tested for possible causes, thankfully nothing too concerning came up. We were told you had hypotonia, low muscle tone. It was then suggested we put you in physical and occupational therapy. These therapies helped you gain the necessary muscle tone and confidence to begin walking.

Your bare feet hitting the wood floor was the most beautiful sound I could imagine. You were two years and three months old, walking! I continued to move your little plastic table that had been handed down to me by the family I nannied for. In that moment this table covered in old paint and crayon was a symbol of hope, that anything was possible. You kept walking towards it partially because it contained a puzzle you were almost finished doing and also because you were enjoying this new skill you had begun doing. Your smile and excitement was the only thing that could match my smile and tears. I stopped everything to call your dad.

I often think of this moment when we face a challenge that seems impossible to get through.

Now years later you’ve become a very strong swimmer and love to go on hikes, proving anything is possible!

You continually remind me to go at my own perfect pace, to embrace what makes me different, to stop and appreciate life and all its wonder. Seeing a passing butterfly still causes you great happiness and excitement, I love that about you.

You’re sensitive and passionate about many things from video games to recycling and everything in between. Listening to you play the piano is one of my favorite things. I feel so proud seeing you connect with others and taking on responsibilities. Your future is filled with endless adventures and possibilities. I hope you know your dad and I will continue to be here for you, to remind you of just how extraordinary you are.

HAPPY 14th BIRTHDAY! We love you more than you will ever know!

Aspergers, Because Of You I Have My Unique Treasure

ASPERGERS, because of you, I never know what the day will bring when it comes to life with my son

Because of you, my family and I live in two different worlds, the “typical”and the “special”, never quite knowing where we fit in

Because of you, it feels like we’re constantly running a race, but feeling like we’re falling just short of the finish line

Because of you, I don’t know when the next melt-down will come. When it does come, I feel like it’s my fault. I should have done this or I could have done that…. All I want to do is speak my son’s language and give him what he needs

Because of you, I don’t know if I’ll be able to comfort my son when he’s having a hard time and it breaks my heart

Because of you, I question what my son needs in any given moment, despite having a mother’s intuition

Because of you, I mourn things not looking the way I thought they should

Because of you, I feel guilty when my frustration, fear, sadness, and hopelessness shows

Because of you, I have to constantly remind myself that despite my son’s abilities and achievements, he has delays in other areas and I have to constantly adjust my expectations, all while balancing his potential and encouraging him to go as far as he can go

Because of you, I’ve cried so many tears that could never be counted, just like the grains of sand on a beach or stars in the sky

Because of you, moments in my son’s life have more meaning. From seeing my son walk for the first time at over two years of age to him being embraced by strangers for the unique, talented, loving individual he is

Because of you, I don’t know what amazing thing my son will say, think, or do next

Because of you, I’ll hold my son’s hand even if I don’t understand. I’ll never stop trying, even through all of the crying

Because of you, I get to live in my son’s world, a world where no one is old and instead of “Killing 2 birds with 1 stone” we “Pick 2 flowers with 1 hand”

Because of you, I’m more vulnerable. At times this can make me feel so weak, but as I embrace the vulnerability I realize that it’s actually making me stronger

Because of you, I’m starting to embrace all the unique things about myself

Because of you, my son will do things in this world that I could never imagine. He is making, and will continue to make, the world a better place just by being who he is

Because of you, I’m empowering my son to embrace who he is, not a diagnosis but a person who has great passions, talents, love, and an amazing way of thinking that just happens to be combined with a sensitivity to sounds, challenges with social skills, filtering, and expressing his feelings

Because of you, I have my son, my unique treasure who I love beyond measure

It Was Worth The Wait

Griffin has been taking a swim clinic to work on his stroke technics and his stamina. He’s also been working on jumping in the pool on his own. He has understandably been nervous about jumping in. At one point he jumped in with someone holding his hand but he just wasn’t ready to do it independently, until last week 🙂

I walked into the pool area and his teacher said, “We have something to show you.” There were other parents in the area who had children of various ages, many of them jumping in the pool. Griffin was the oldest of the bunch but he didn’t seem to care. As he neared the edge of the pool I couldn’t help but smile. He was going to do it, he had overcome his fear. The pride on both of our faces was undeniable.

As is the case in moments like these, I was reminded of of something. That it doesn’t matter what age Griffin achieves something, he will in his own time. The achievement will be all the sweeter. The same applies to me. Lately I have been feeling like I haven’t accomplished goals I set for myself. I feel like they will never happen. I feel like a failure. But I have an amazing teacher in Griffin and I know that in my own perfect time I will achieve my goals.

The “Shtick” Hit The Fan

As I mentioned in a recent post “So This Is Love” we had to start a new behavioral plan for Griffin. His cursing, along with disrespect, had gotten out of hand. The plan is to have him go 21 days without these target behaviors. He is on a video game hiatus until he hits the 21 day mark.

Griffin made it seven days without having any target behaviors, including cursing, but then the “shtick” hit the fan.

While in class this week another student accidentally said the word “shtick” instead of stick. Griffin and the rest of the kids laughed. Unfortunately, it sounded so close to “shit” that Griffin immediately started using it like a curse. I did mention that we call him Loophole McGee, right?

Normally using a replacement word would be great, but this word sounded so close to the actual curse word. It didn’t help that he kept saying it repeatedly, even after he was warned to stop. By then he just thought it was so funny and started saying things like, “That’s bull-shtick!” I was trying so hard to help him out, but in the end we had to count it as a falling off the wagon moment and so he would have to start the 21 days over.

I was freaking out about having to tell him that he would need to go back to square one. I was preparing for a meltdown and trying to plan the right time to tell him so that we could avoid any potential unkind reactions our neighbors might have.

As soon as we got home he asked me if he would need to start over. I knew he knew the answer, so I took a deep breath and said the inevitable: “Yes.” He looked at me, got up, and then went to his room. I thought, Ok, here comes the banging and screaming. But instead I heard a muffled scream into a pillow. He walked back out and calmly began talking to me. He acknowledged that he had to begin again and expressed that he really hated that he had to start over.

At this point, I’m in shock and in need of a very large glass of wine. Going from preparing for a major meltdown to his amazing response did a number on me. I couldn’t help but cry tears of relief and joy. I told Griffin how proud of him I was, and that I knew this was hard for him. I let him know that he could do it, and to take pride in the fact that he did it for a whole week.

Why Hello There, Don’t Mind If I Do

We’ve had a few re-starts this week but tomorrow is another day. We’ll just keep taking it, not one day at a time, but, one glorious and unpredictable moment at a time.