OLD.........................

 There is a movie coming out this week- called OLD. It's scary and I pray Robbie never sees the preview of this movie. Why? Because getting old is a huge stressor for him. And movies are a crucial way he communicates with the world.  Sadness and Joy from Inside out are a huge part of our communication system. Back to getting old....his grandparents and gamparents- my parents -Gama and Gampa-  are old (his words - not mine.....) and he wants to make them young. His parents- especially me- he does not not want to grow old.  He also doesn't want to " grow old" himself.  There is some video he saw - months ago -showing a boy who was  grounded to his room. The cartoon video spans over 70 years with the boy, teenager, man , old man talking about how he was grounded. It spans his entire life- in his bedroom- being grounded. Getting older is tough for all but for Robbie it is a major source of anxiety.  Usually I feel fairly confident in my ability to help him manage his stress. Usually I have an easy explanation as to why he should just breathe.  This one is tough. Tough because my career surrounds it as well. I work for a company who provides Hospice care.  In that space- I feel 100% confident speaking to end of life care and goals of care. But that is to others. That isn't to my son, with special needs. Who I am terrified about what will happen - to him, for him, when I am gone. We can plan for those times- but who will love him? Who will tell him to breathe? Who will make sure he gets what he needs to be a healthy, happy member of society? When he won't be able to do all those things on his own..... Or - do I start these conversations- the ones I feel so confident about with people I have never seen. Do I explain to my son- who has Autism- that we all get older. We all  die- its the journey that matters. And that I will always be here- at least in spirit - to love him.  As I write this Robbie comes into my room to tell me - " Mom, I love warm hugs - Do you love warm hugs?"  Yes Olaf.... I mean Robbie. I love your hugs. 

"Typical " morning in our house

 I have to use the word typical - because there really is noting typical about Autism. Mornings are touch and go for Robbie. I used to think it depended on how much or little sleep he got- what snacks he had eaten while the rest of us slept, what movies or videos he discovered or a number of other factors. Now I realize- I have no idea. Each day brings its own set of challenges but there are daily dialogues that remain the same.  Lately, Robbie has been stuck in a loop- for lack of better terms. He has been obsessed with the movie " Aliens in the Attic"  going on  2 years now. He could recite every word by heart and he talks about it all the time.  Every day -at a minimum , he'll ask  25 times  " Are you going to fight Aliens with me- like Aliens in the Attic?"  He also asks that his siblings, both sets of  grand parents and newly - his Aunt Suzie fight aliens along side him. Dad is not included in this fight. In the movie there is tension between the teenage son and his dad- so no Dad. The Aliens take control of the family and there are scenes where Grandmom does an  incredible fighting sequence- which he refers to as " Kung fu Grandmom.".  In Robbie's room  there are images from the movie he's printed and taped together. There are pages of pictures of the characters. We've even watched other movies the actors are in.  It's endless. 

 A new and best comment from this morning- " Mom, I'm a teenager and it's..........hard." That had me doubled over in laughter- very appropriate comment for a 15 year old- autism or not.  Additional daily morning conversations include- " I don't want to go to school and do the works."  Or - "I yelled at the teacher, I'm sorry I did that." In reality , he may have yelled at his teacher 3 weeks ago but he has trouble moving on.  " Mom, feel my heart - you got me? " is always mixed in as his anxiety level increases and you can feel his heart beating fast.  I explain - every day- - He will be fine at school. His teachers are not mad at him.  He just needs to breathe and his heart will be ok. And most importantly- "Yes Robbie, I will fight Aliens with you- any day and every day. Whatever the Aliens are- I've got you."

The Differences of those on the spectrum

 Everyone is unique- even those on the spectrum. What I've learned over the years is each child - especially Robbie's friends have some distinct similarities- but many more differences.  Differences in physical abilities, response to social and nonsocial stimuli, and the activities they enjoy. Each year Robbie asks to have his friends over to celebrate his birthday. Each year we plan the big event. The food- always pizza, the cake, and the theme. Each year he is extremely excited about his birthday. We talk about it for weeks prior to. Each year ( with the exception of last year - Covid- ugh) he invites his friends , who all seem happy to attend. Each year I envision this amazing party where Robbie and his friends play together. In my mind I see them interacting and laughing. What ends up happening is, Robbie's friends arrive. They eat. They walk around and check things out. They are smiling and seem happy but there is rarely much interactive play. They don't socialize in the same way his little brother and friends do. They also don't need extended hours of social interaction. Some can definitely tolerate more than others. Some are more verbal than others. Robbie loves movies and could watch for hours. Most of his friends don't share the same passion- at least for extended time periods. But , after years of attempting an epic event I have learned a shorter length of time is better for Robbie.  While he does crave social interaction, he can only tolerate an hour or less. Some years he would leave his friends and retreat into his room. Now, I realize- for Robbie adding small social and nonsocial events throughout his week are more beneficial. A lunch outing with friends at his favorite restaurant. Going to the park with a friend to swing and play basketball. Going to the gym with me in the morning or going for a short swim. Today I took him to the gym for a swim and after 30 minutes - he was done. The woman at the front commented- that was fast. I explained he is on the autism spectrum and only likes short doses of whatever he's doing. They may see up twice on Sundays- but for no longer than 30 minutes. 

Educating those who come into contact with Robbie has also been very important. Whether it be family or friends. A friend of Timmy's Mom recently asked me if it would distress Robbie to talk to him directly? For a minute, the question made me pause- but it also made me so happy that she asked. I'm sure it was uncomfortable to inquire but it shows me that people are curious and they care enough to talk about it. I had another friend discuss extending Robbie's social interactment each time so he could tolerate it more. While in theory- that makes sense , I also know it's ok to help him get what he needs and leave it at that. Again, each kid is different.

To clarify- Robbie loves it when you talk to him directly. He responds best to those who treat him just they treat every other kid. He is happiest at places that don't make him feel any different. I hope I don't make him feel any less as I do feel the need to let people know about his disability. He's 6 feet tall and weighs 215 pounds. To glance at him , you might not catch the disability- but if you look at him closely you'll see the stimming behavior or the lack of eye contact or maybe you'll hear him say " You got me Mom?  Mom, have you you got me? You got me???"   And my response - which is always the same.  "Yes Robbie, I've got you. I've always got you."

Sometimes you just need..... Family

 

Sometimes you just need- Aunt Suzie 😊

The past year has been long- for everyone. The lack of being in school, after school clubs, dances, sports and plain old get togethers with family and friends, has been missing.  You might not realize how much you miss it- until you have a glimpse again.

This weekend we were so lucky to have a visit by my sister- Aunt Suzie.  She brought crafts- a rock painting kit and jewelry making.   All the kids- (Mom and Dad included) sat together to paint rocks, add stickers and googly eyes. Robbie was very proud of his emoji rock- as he should have been.

On Saturday afternoon, we had decided to run a few errands- buy makeup at Ulta for Lexi, maybe shop, and maybe lunch. Usually when I ask Robbie if he wants to join us- he politely declines. “ I don’t want to go!! I want to stay in my room. I want to watch movies!”  This Saturday- he declined at first but as I was saying goodbye, he changed his mind.  “ I want to come. You can’t leave me.”  He wanted to be included. He saw his siblings, myself and Aunt Suzie getting ready to go somewhere- together. I was thrilled he wanted to come.

Our first stop was Ulta- the makeup store. Robbie stayed in the car with his phone- but I made Timmy come with us.  “This is a girls store.” Timmy said as we entered the pink, sparkly, perfume smelling store. I promised we would go to a more – Timmy, Robbie friendly store next.   Next stop- 5 Below. As we walked to the entrance Robbie said an enthusiastic   “Yes!! Can I buy toys?”   He picked out a candy and a toy- as did his brother and we were off to our next stop.  Smiles all around.

Lunch!  Lexi wanted to try something new, so we ended up at Bertucci’s.  A perfect balance of new- as we had never been as a family- and safe- pizza.  We were the only customers there and lunch was great.  Peperoni pizza is Robbie’s favorite food – and how can anyone not be happy – when eating pizza!?

At home Saturday evening we sat at the kitchen table and played Don’t Make Me Laugh- a game Aunt Suzie brought that entails teamwork and charades. Robbie happily joined us. We picked cards with scenarios to act out- and threw in our own ideas and rules. Aliens in the Attic- Robbie’s favorite movie was of course in the mix. It was a hysterical evening filled with laughter from all.  After Robbie went to is room and the rest of us decided on something together downstairs.  We ended up watching I am number 4- a pg-13 movie which includes Aliens- which could have been the draw.  Robbie came down and watched with us.  He sat in the middle and was completely engaged until the very end.

Why is all this engagement meaningful? Robbie spends much of his time in his room. When he is in common areas- its usually to eat or tell me that he needs something. If he joins us for movie nights, he ends up leaving to the sanctuary of his bedroom.  Having him with us and being so engaged was such a treat. It reminded me that even though we don’t see my family that often (due to distance and more recently covid)- It’s so important for all of us.  It is so nice to see that extended support system for Robbie- family who loves him- just as he is. And as a bonus- we saw Aunt Suzie acting like a dog, Timmy was able to put makeup all over me, Lexi guessed almost every card correctly, Robbie was able to act out his favorite movie, and Dad watched as we all jumped around with “Ants in our pants.”  A perfect weekend.  I needed it as much as Robbie did. We love you Aunt Suzie! We can’t wait to see you again soon!

" I got you... You got me?"

 

“I got you- you got me?”

50 times a day- “ you got me mom? Mom do you got me? Mom, I’m trying to focus- you got me?”  Reality of Autism- repetitive comments.  Sometimes it comes out of nowhere.  “Mom I’m watching a movie- you got me?” Other times it is specific- “I’d like to make a movie- you got me?”  “Mom, my face is hot- you got me?”  “ Mom, I’m exhausted from talking, You got me?”  I don’t remember where the phrase came from- although I know with 99% accuracy – it came from a movie.  Movies are familiar. Robbie will watch them so many times- he can recite most of the dialogue. Movies don’t require work. They don’t expect anything from him. He can get lost in his movies. They are one of his happy places.  I don’t think I truly understood the importance of movies until watching one like Inside out. That movie did such an amazing job at characterization of emotions- literally turning them into actual characters. They have colors and facial expressions and are easy to understand.  This is extremely helpful for those on the spectrum who have trouble understanding which facial expression goes with which emotion. Something most of us don’t ever have to think about. Robbie will tell me when he’s smiling- which is actually hysterical because he contorts his face into the largest- toothiest grin you’ve ever seen.

Another reality of Autism. Lack of empathy. A huge concern I have for Robbie as he gets older is the complete lack of empathy.  In his world -many times -he can’t see beyond himself.   I can’t say he is selfish, he just can’t see that far.  As I feel sadness or grief about one of my best friends who is battling cancer- he can only express he is sad. The reality is – he is not sad or empathetic of my sadness- but he needs my attention to be directed towards him. That causes him anxiety. Honestly- some days- I am annoyed. I want to scream- “No- you are not sad – I am sad.”  But I know that will never help- only cause anxiety.  I also worry- that he will never truly have a relationship- in the sense that most of us have. While he has friends- the emotional depth is not entirely there.  Maybe it will spare him the grief of worry or loss, but will he ever experience the joy of true friendship and love?  All I can say- and all those that support him in school can say is- “ I got you Robbie. I’ve always got you” Because right now- that’s the best and only thing we can do.

We all need a little socialization- and a movie

 

As Covid goes on and on………..Robbie is yearning for some socialization. Last night we talked about kickball, which his little brother will be doing in the spring. I had my computer in front of me and he happily said” I’d love to play” and came to sit by me. As he looked at my computer, I realized he thought I was talking about a computer game. But the more I think about it the more I imagine him playing kickball. Kickball with some of his friends who all happen to be on the spectrum.  And maybe a few other kids as well. And then my mind wandered.  I was reminded of the time I had signed Robbie up for soccer as a toddler. It was at a park where there was a small field and a playground with swings to the side.  The swings caught his attention immediately and that was all he wanted to do.  He could swing for hours- still can. It didn’t resonate at that time as anything out of the norm- other than maybe he didn’t like soccer.  Now that I think about it if I get it if I get a kickball game going, I need to ensure it’s at a location where there are no swings to distract him.  Or maybe I’ll suggest a day at the park- on the swings instead.  To be honest - he’d prefer that anyways- who am I kidding!

It’s funny the memories that pop into your head some days. Those days there was very little language. These days there is lots of talking. Most of the talking is about movies. He loves movies. He loves to watch movies, talk about movies, draw pictures of characters from movies…….  Generally it’s the same handful of movies that he obsesses about for a few months at a time. These days its Aliens in the Attic, Over the Hedge, and Hop.   Our latest obsession is about creating a movie. He’d like to recreate Aliens in the Attic using our family. It’s mentioned at least 50 times a day. “I want to make a movie- like Aliens in the attic. With the heros and villians . we’d be heros and have shooters, like the potato shooters on Aliens in the attic. You like Aliens in the Attic? You want want to watch with me? I’m going to go watch in my room.”  Hopefully, one day soon- when things get back to some kind of normal we’ll be able to find a way for Robbie to play out this movie- or who knows- maybe he’ll grow up to be the next Spielberg.  One can dream 😊