Category Archives: Uncategorized

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.

If I Could Turn Back Time

We drove by this little delight over the weekend. Immediately Griffin starts with “I really want to go there, when can we go?”

I would do almost anything for my kid but this? This fresh weirdness is not one of them.

Why in the name of all that is holy would I pay a ga-zillion dollars to eat with my hands and risk a horse or flying falcon doing their business near (or on) me as I gnaw on a turkey leg?

I love animals, but no, just no!

If I’m going to turn back time, I’m going to go back to the 1920’s. There I can wear a sparkly flapper dress, rock a bob, and drink some Hooch. Sure, there’s the risk of getting consumption. But I’m dancing the night away and playing my ukulele, so who cares?

I think my boys know where to go on their next guys night out.

I will however be in my flapper dress drinking champagne out of my shoe.

*This piece does not reflect the views of Tom and Griffin Dean, only of one flapper named Missy.

Happy Tears

I wanted to share a very special moment that happened last week. The following is an email I received from a fellow mother regarding a moment she and her son had with Griffin. I share this email with her permission. I’ve changed her and her son’s name to protect their privacy.

Missy,

It was such a pleasure meeting you and Griffin at the Y on Friday. Getting to spend a little bit of time with your son, was absolutely the highlight of our week. Griffin is such a sweet, articulate, thoughtful kid! I wanted to quickly share with you a little bit about the exchange we had, and how very much it meant to me.

When we got to the Y my son Seth & I were the only other people in the locker room with Griffin, I was organizing our locker, keeping one eye on Seth jumping around. Griffin noticed Seth and casually mentioned to me that we should be careful with the lockers, he had slammed his hand in one and it hurt quite a bit. We chatted for a few minutes while we were getting our swim gear ready. Then Griffin took the initiative to look at Seth directly, and introduce himself. Seth’s language is almost entirely echolalic, so I said “Seth, you can say hi to Griffin,” and Seth said “Hi to Griffin.” Griffin smiled and said, “Did he just say ‘hi to Griffin’ instead of ‘hi Griffin?” I told him that yes he did, and that Seth has trouble communicating, so a lot of times he just repeats exactly what I say. (I had a little bit of that ball in my stomach, that you may be able to relate to, thinking, ‘oh please continue to be as sweet and kind as you seem to be, and don’t laugh at my kid) Griffin did not disappoint, if fact he turned out to be more extraordinary than I could have imagined!

He did not even come close to laughing at Seth’s quirky way of speaking, he just smiled and said, “ah, that is so cute!” We had a little bit more of an exchange, and he told me that sometimes he repeats stuff too. He then volunteered that he was on the autism spectrum and had Asperger’s. You would have to ask him, but I felt like he shared this because he recognized that Seth was autistic. I told Griffin that I thought is was really cool that he has Asperger’s because that means he has a lot of special talents and I told him that Seth was on the autism spectrum too. And this is when I literally melted into a puddle, your son told me “Thanks! Seth has a lot of special talents too. He has a great smile, and he can jump really high! And… oh yeah, he has a really sweet voice.” I just smiled and said thanks, that was a really nice thing to say, and we’ll see you in the pool, and turned took Seth into the pool area with a waterfall of tears down my cheeks! I mean wow, seriously, what an amazing kid you have!

Then he was so sweet, continuing to try to reach out to Seth in the pool, it was so great. I hope you don’t mind me sharing all of this, talking to your son was a wonderful reminder for me- my husband and I often spend so much time talking to each other and teachers and therapists about all of Seth’s challenges, deficits and areas of struggle, and in just a few minutes with him, all your son saw were positives, and “special talents.”, -Rachel

This was part of my response to Rachel’s email. I was so overcome, I couldn’t begin to tell her how much it meant to me but I tried.

Rachel,

Hello! I can not begin to tell you how much your email means to me, Griffin, and Griffin’s dad. I was crying such happy tears when I read it. You have no idea what your thoughtful and detailed account of what happened did for us. I don’t know where to start but I’ll try.

Lately Griffin has been having some challenges with certain behaviors, mainly cursing. The cursing has been a real issue for awhile. We are fortunate enough to work with ABA therapists that help target this type of behavior. He’s come so far but honestly some days it feels like he’s taken major steps backwards. Hormones have also started so there’s that 😉 We have been working on independence, which is why he goes into the locker room and the pool by himself. We have been going to the “Y” for so long and the staff is amazing. I’m always in the lobby if he needs me.

Once he gets into the pool he is suppose to do a certain amount of laps. We consider this his gym time/assignment. Because he also has ADHD he sometimes gets distracted, which is why after a certain amount of time I will go in and see how much he’s done so far.

When I came in I have to admit that I thought “Oh, no, he got off track!” But I quickly realized something more important was going on. He was connecting with you and Seth in the most amazing way. I know what you mean when you think “Oh no, please be nice and don’t make fun of my kid” once someone realizes what is going on. We feel the “pit in the stomach” once someone see’s a meltdown Griffin has, will they still think he’s amazing?

I am beyond grateful that you got to see Griffin for who is truly is, an amazing kid. I’m also grateful that Griffin without question saw your beautiful Seth for the amazing kid he is.

We have taught Griffin to celebrate and to be open about his differences if he feels comfortable doing so. We’ve also tried to teach him to celebrate others differences too.

So much of what you wrote resonated with me, including the part about talking about and focusing on the challenges and struggles. We speak the same language. I hope you and Seth know you have two new friends. -Missy

In the beginning of realizing something was going on with Griffin, there were many times I would find myself on the floor crying uncontrollably and praying to God for answers. There was so much confusion even among the professionals he was seeing. I prayed for wisdom and that these professionals would be able to help us. I remember thinking that one day if I was able to help just one person the pain might just be worth it.

I immediately noticed the teary eyes Rachel had when I first saw her and she began to speak. I have had those same teary eyes. To know that someone gets it, is such a comfort.

It’s a privilege to be in the position to be there for others going through a similar experience. I’m so proud of Griffin and the beautiful soul that he is and that he is spreading love and unconditional acceptance.

The First Week Of Griffin’s New Plan-“I’m Not Perfect!!”

It’s been over a week since we started Griffin’s new behavior plan. For the most part, Griffin has been adjusting really well to the changes that have been in place.

To help with the repeating/scripting, each day he is given a certain amount of pieces of paper that have a dot on them. He gives me a dot each time he wants to repeat and wants me to respond back. We started out with giving him 75 dots at the beginning of each day. He had so many left over at the end of each day, that we have now reduced the amount of dots to 50! This is amazing because on average he was repeating certain phrases up to 100 times a day. This is a behavior that we do not treat in the same way we would cursing. He does not loose the chance to have a desired reward if he repeats. We are targeting this behavior because we want him to be able to self sooth himself and not be demanding or expecting someone else (me for the most part) to fill this role.

Connect The Dots!

Even with the plan being printed and posted where we all could see it, it was still easy to forget every detail. So we were both let down when we realized he had to go 21 days without certain behaviors which included no cursing. “What the *$@!” I thought to myself.

On the night I had to tell Griffin about the 21 days rule, Tom was not home. I was so stressed out. I knew a meltdown would be the main event of the night, most likely for both of us.

Griffin’s response when I told him was “I hate them (his ABA Therapists)! Why are they trying to ruin my life? Why are you letting them? I’m not perfect. I can’t go three weeks without having any behaviors!!!

In the back of my mind I knew this moment was coming. There’s always a transition period whenever there is a change in Griffin’s behavior plan. We feel overwhelmed, then hopeful that the new plan will work but then reality sets. He, like most kids tries to test the limits and find any loopholes. I didn’t give him the nickname “Loophole Mcgee” for nothing. 😉

I explained to him that no one expects him to be perfect. I reminded him that because cursing is still a real challenge for him, we had to make a rule where he could not curse for 21 days, no exceptions. His therapists’ told him that is usually how long it takes to break a habit. We tried allowing him some leeway in the past but the cursing got out of hand. The other behaviors that fall into this category are respecting mom and dad, keeping hands to self, and respecting property (no slamming doors or banging on walls). He’s a teenager now, so hormones are playing a big part in the increase of these behaviors. Ah, to be a teenager again!

I was trying so hard to support him and figure out a way I could encourage him. I told him I would not curse for 21 days, don’t tell him but I’ve already blown it. My new countdown starts tomorrow 😉 I then made this very sad looking advent inspired calendar count down. It’s taken a few days but today he’s gone a whole day without any targeted behaviors!



Should I start selling these?

So This Is Love

This past week has been extremely challenging for us. I won’t go into too much detail because I’m always concerned with protecting Griffin’s privacy. And I also don’t want to add to the already existing confusion that surrounds Aspergers. We have an amazing team of professionals that have and continue to help the three of us and for that we are extremely grateful.

Due to the challenges we faced this week, we had to re-work Griffin’s access to technology plan. Basically it’s a plan that lets us all know how much tech time (video games) he can earn each day if he has appropriate behaviors. There’s also a chart that tracks the behaviors he’s working on that I fill out each night.



Griffin’s new plan of action, it’s over two pages long. It feels like a novel we have to read and then memorize. It also feels like a major step backward.

Thankfully we print it out so we that we’re all on the same page, see what I just did there?

We’re also working on Griffin’s repetitive behaviors. It involves me repeating back to him certain responses to questions he asks me. He repeats these certain questions close to 100 times a day. We’ve come along way with this behavior. Sometimes instead of answering him back I will give him a thumbs up but it’s still a big issue. As his mom I would do anything I could to help him. We honor all of his challenges and try our best to equip him with tools he can use, so he doesn’t have to be dependent on someone else. The stress of this particular behavior is affecting all of us. We are trying a new approach this week. He will get a certain amount of tickets per day that he can use to repeat to me and then get my response. When he’s used all the tickets up, he knows I will not answer him back. I know this is going to be challenging for both of us but I know we can do it! Despite the stress and knowing addressing this behavior is in Griffin’s best interest, I still feel guilty. I feel like I’m being cruel to him. Mother guilt is a bitch 😉

During this week we had major support from people that had no idea what we were going through and are still going through. I wanted to highlight those moments as a way to thank them and to stay grateful and positive.

The first moment happened on Tuesday at the homeschool group we are a part of. Some of the kids were playing with a balloon. Griffin likes balloons but gets very nervous that they may pop. With his ears covered he asked them to stop playing with the balloon. Despite the fact that he was really nervous, he was able to communicate appropriately. I was really proud of him. I went to get his earplugs because I understood that the kids might still play with the balloon. That’s when the mother of one of the kids told them to stop and then said to me after I thanked her “Griffin’s comfort is more important than them playing with a balloon right now.” She also told me how her daughter has sensory issues too. I thanked her again and told her how much we appreciated her understanding. I also used it as a moment to teach Griffin. I told him to remember how understanding people were to him, so he could do the same thing when he saw someone having a challenging time.

Then this past Thursday we had a last minute doctors appointment downtown. We had to go during Griffin’s ABA session, so his therapist came with us. I was so happy to have the back-up, even though Griffin does great when we go places. We usually make a day of it when we go downtown but this time we could only go to the appointment. I always make the appointment for the afternoon so we can avoid crowds. But this time we had to take the train during morning rush hour, not the best time for a kid with sensory issues.

The appointment went well and because we had some time after we were able to visit the Disney store. We visit the store on appointment days and have made friends with people that work there. I told Griffin that our friends might not be there but it would still be nice to go.

After we went through the doors we started looking for our friend Lena. I always text her to let her know when we’re coming but because this was a last minute appointment I was unable to, lucky for us she was working. The joy that came over her and Griffin was just the medicine we needed.

I got to talk with Lena as Griffin and his therapist looked around. Lena spoke such encouraging and supportive words to me, it was a true gift that left me uplifted.

Griffin found some Tsum Tsums which happened to be on sale. He asked if he could get one and because the therapist was right there I kind of flustered and didn’t know what to do. By the way his therapist is wonderful and never for a moment makes me feel like she knows better than me. I started to tell him he could get them with his own money next month when we came back. I asked Lena if the sale would still be going on next month and she whispered “no.” As I started to tell Griffin I would pay for them and then he could pay me back, Lena reached into her pocket and gave me the money to pay for them. She knew I would try to say no, so she said it was her Christmas present to him. I was so overcome with emotion and so was Griffin.

Later that day we went to the “Y”. While Griffin was swimming I visited with some of the staff. As we were talking I briefly shared that we were having come challenges with Griffin. One of the employees who works at the “Y” shared with me that he too was having a difficult time with his own daughter who is also on the autism spectrum. The head of the after-school program passed by and she reassured me that with the weather being the way it has been (we went 8 days without sun!) it was understandable that everyone was going to be affected in one way or another. My “Y” friends let me know that they were there for me. All the stress and worry really hit me and I couldn’t help but start to cry a little.

Griffin and Lena

In moments of sadness and worry I experienced love thanks to the wonderful people I encountered and know. Love is being there for others, especially when we don’t know what they’re going through. We’re all going through things, we all need to be there for each other.
Here’s to love yet to come!