A Family's Journey- and the death and the dying

For Robbie - getting old, gray hair, sickness,  death and  the dying, as he calls it,  is a huge cause of anxiety.  Let's be honest- it is for everyone.  On Thursday January 18th, I got a call from my dad- who rarely calls me. My mom and I spoke almost daily- so there was never a need to. But on this day my mom had ,what they thought was a stroke.  After a few minutes of processing I left work and went home to pack. I assumed I would be gone for a few days- as they are 6 hours away. That visit turned into 2 weeks.

During that time it was determined not to be a stroke but Bells Palsy - which can stem from an upper respiratory tract infection. This happened while she was getting treatment for the lung cancer that ultimately took her life . So now- hospice starts, additional home care is added. Myself, my sister and my brother rotate our visits to ensure someone is there along side my Dad as we watch my mom fight through her last few weeks.  Fast forward 6 weeks - she passes away. It was too quick and also too slow.  My last visit ended Monday March 4th.  She had told me she loved me March 3rd. Those were  the last words she spoke to me. Before I left on the 4th, I told her I loved her, I'd see her soon and I was ok. I know she worried about me.  She looked me in the eye and gave my hand a gentle squeeze. The call from my Dad came the morning of the 6th. She had passed during the night on March 5th.

During that time and  the months prior, I spoke with my children about the circle of life. This was especially important to Robbie. As he refers to it - you are either young and alive - or old , death and the dying.  With autism things are black and white while many of us see shades of grey.  I laugh as I write that sentence -  Robbie will tell me the minute he sees the new growth of grey hair on the top of my head- a sign to get it colored immediately. He prefers his mom with her "yellow hair".  He does not like seeing anyone age.

There is so much else I could write about the experience of my mother's passing but things always come back to the perspective of my Autistic son. Currently, he talks about his other grandparents. They are younger than my parents, which brings him comfort.  Young and alive, as Robbie says. As I try to remain positive and not talk about the process of - the old, death and the dying it feels like its all around. It's not even working in Hospice care myself but seeing so many friends lose parents. Seeing friends battle cancer themselves. And recently telling one of my best friends she's not allowed to be that sick yet. At 50- we are too young, and selfishly- I can't bare to lose her. Young and alive. All of this is perspective.  So moving forward I am going to try and stress to my 18 year old son , who sees life through a very different lens - even as we grow older- we are alive and there is so much to look forward to. Young and alive, old , death and dying- grey hair or yellow hair- as he prefers to see mine.  This is our journey and its a beautiful thing :)

But damn- I miss my mom .............

Mom's Journey

 I have been blogging since 2009.  14 years-and it has been a journey. In March Robbie turns 18. He will remain in school until he's 21- but I am terrified.  Robbie loves all the Toy Story movies and   is  6 feet tall and 250.. He is that sweet little boy much of the time- but he is also a 17 year old man. There are hormones and emotions that he has a hard time controlling. Sometimes my son scares me.  It's hard to write about.  I worry about how life will be for him as an adult. What happens when  I am  not providing the the therapy and help needs?  Currently he's getting home based therapy once a week which is really someone sitting with him and talking to him about the pictures he's drawing or the movies he likes.  I'm also trying to get him ABA in the home after we had taken a break from it around Covid. This has become a tougher task than I had expected as there is a long wait list to get a therapist. Getting his guardianship papers are my next challenge. He will be 18 before you know it but he will still need his parents to help with medical decisions. He takes multiple medications to stabilize his moods and calm his anxiety.  The world can be a scary place for all but especially for those on the Autism spectrum. He is a small boy trapped inside a man's body. 

The question is- what will the next 14 years look like? Will Robbie live independently?  Will he be able to keep a job? Will he find a girlfriend- with yellow hair who likes watching movies and eating popcorn?  Will he be happy? So many questions and no one knows the answers. I couldn't have imagined the changes that have taken place in my life over the past 14 years.  Some incredibly challenging and some incredibly rewarding. I will hope and pray for all 3 of my children  They have friends and family who cherish their relationships. That they find love and a partner who is not only a good match for them but supports them emotionally.   They find careers that keep them rewarded and challenged. That they find time and space for self care and FUN!!

As we roll into the new year- I wish 2024 is the best year yet- for everyone :) I am grateful for the support of my family and friends as the past few years have presented newer challenges for Robbie and myself.  NYE tonight was  special. Robbie sat with Timmy and I as we watched the ball drop. He cheered with sprite and spoke about what he hopes for 2024. New York city for his birthday.................  OMG and YES!  A renewal of the hopes and dreams for all- however big and small.

                                 Bring on 2024!!!

I'm on the good list- Santa says!

 My kids are 17, 15 and 10.  I still have 1 and a 1/2 believers.......  Of course the biggest believer is Robbie. He is 17 and has autism. Santa is real, because it wouldn't make sense for him not to be. He looks for our Elf on the Shelf- or Elves- as we have 3-  every morning - to ensure they went back to report to Santa the night before.  He can't be on the naughty list. There are presents that need to be under the tree.  Each day, during the month of December, Robbie will say- " I'm a good boy- I'm not on the naughty list."  He will actually catch himself, when behaviors escalate, calm himself down- to ensure he's not on the naughty list.  Last week his therapist asked how things have been going. I paused and thought about it, which brought me the material for this blog.  Why have his aggressive / violent behaviors diminished this month?  The answer is so apparent- SANTA!!   " SANTAA! Oh my god!  Santa, here?!? I KNOW HIM!!"

If you've seen the movie ELF - with Will Ferrell - you will understand the comparison I'm about to make. Buddy the elf is a large man who is so innocent in regards to the ways of the world. He loves Santa Claus and all things Christmas. In the most simple form, he is looking for his needs to be met, and will not stop until they are. That is Robbie.  6 foot 1 and 240 +pounds - he is a big kid. He just wants his presents, to watch movies and eat popcorn.  Robbie- like Buddy- loves hugs and requests them often.  I can picture Robbie asking a girl he likes " So... do you want to eat food?'  Pure and simple- with nothing else implied - except eating food- preferable pepperoni pizza.  I can imagine having to tell Robbie " You see gum on the street- leave it there. It's not free candy." Simple but true statement from Santa to Buddy before he goes off into the world.  Robbie will apologize for his behavior after there is an escalation. He's sorry for yelling, saying the F word, pushing or hitting.  This is similar to Buddy saying " I'm sorry I ruined your lives and crammed 11 cookies into the VCR." 

My question- how can I take this simple joy and transfer it to the rest of the year?  Or as Buddy says " treat everyday like Christmas."  If anyone knows- please feel free to pass it on :) 

Some days take less- but most take more- Some days are better than others

 Some days are better than others- as they say. Other days the weight of  life seems suffocating.  Autism, Lung cancer, Parkinson's, Teenage drama, Preteen emotions, Divorce, Family vacations, being a good maid of honor for the upcoming wedding, getting the job done for the work you love, and  (gulp)dating at 50 - all the things. Finding balance is tough for all- and finding balance for a teenager with Autism is especially difficult.   Robbie has basic needs- like we all do-  but his need immediate attention- or there are consequences.

He needs to take his medications - Abilify and Prozac each morning- and Clonidine each evening.        He needs to eat  meals- because if he gets "hangry" - that place where he's so hungry he is angry            about it-  heads will roll                                                                                                                              He needs his sleep. But some nights- no matter what we do- it doesn't happen.                                        He needs physical output. It can be challenging to get him moving at times, but like all of us- he            feels better after he does it.                                                                                                                          He needs touch- hugs, multiple times a day- " Just gently" but no kisses- even on the cheek.                    He needs to feel needed- he's going to save his "Gamparents" as we call my parents Gama and              Gampa. He wants to be the " hero."                                                                                                              He needs his " alone time"- where he can watch movies and get lost inside of them. 

The tough part of all these - is the balance of it all. Life is always changing and moving.  If there is no balance he may get angry and sometime violent. At over 6 feet tall and 240 pounds- this can be...... problematic.   Some weeks are fine- and this behavior doesn't show itself. Those are the best weeks.  Yet- how does one balance the needs of an autistic teenager, female teenager, preteen- while working full time in a challenging career, doing the best to care for your parents from 300 miles away - and regretting the decision that moved you so far away, supporting your sister with your maid of honor duties, being present for your friends, navigating the world of dating at age 50 - And  damn -the extra pounds stress, age and menopause causes!  UGH- if anyone figures it out- let me know! Some days are just better than others. For now-  it is  writing blogs, listening to music and leaning on the friends and family I love! Thank you :)

"Some days are dry, some days are leaky. Some days come clean, other days are sneaky. Some days take less but most take more. Some slip through your fingers and onto the floor.  Some days you're quick but most days you're speedy. Some days you use more force than is necessary. Some days it all adds up and what you've got is enough. Some days are better than others. 

Some days are slippery, other days sloppy. Some days you can't stand the sight of a puppy.  Your skin ins white, but you think you're a brother. Some days are better than others. 

Some days you wake up with her complaining , Some sunny days you wish it was raining. Some days are sulky, some have a grin. And some days have bouncers that won't let you in. Some days you hear a voice taking you to another place. Some days are better than others.

Some days are honest, some are not. Some days you're thankful for what you've got. Some days you wake up in the  army. Some days are work, most days you're lazy. Some days you feel like a bit of a baby. Lookin for Jesus and his mother. Some days are better than others.

Some days you hear a voice - taking you to another place. Some days are better than others."

U2- Zooropa

 

Firestarter

 This weekend I had the opportunity to slow down and relax with my kids. My youngest and I watched a lot of movies as he wasn't feeling 100%. One of them was the remake of Stephen Kings Firestarter. The little girl in the movie has incredible powers- she starts fires when she's angry. Today- Robbie reminded me of her. His anger generally comes from 2 places - severe anxiety and when he wants my full undivided attention and at that exact moment I am unable to give it to him.  A combination of  The Hulk and Firestarter begins.  The cursing, the grabbing , the pushing, the "angry face" and then - sometimes the hitting. Luckily this aggression is geared towards me- his mom- his safe space.  You can see it in his face when it comes- yet it's taken a long time for me to figure out the cause.  Sometimes I can deflect it quickly- other times- it needs to run its course. It can be jarring to witness- especially if you haven't seen it before.  Robbie is 6 feet tall and 240 pounds. He's strong- he can pick me up and I'm not telling anyone how much I weight. 

The aggressive behavior comes and goes. When Robbie was 10 he used to bite. At one point I had some awful black and blue bite mark on my arms. Thankfully - it was still cold enough to wear a long sleeve shirt. Generally , Robbie is what I consider-  a gentle giant. He is sweet and emotionally immature. He watches " happy" movies. Toy story is his absolute favorite- all 1-4 - but he'll tell you Toy Story 1 is his favorite.  He doesn't like sad or scary movies- yet like any curious child will watch Final Destination, Halloween, and Cast away - Tom Hanks might be the draw in Castaway- he is Woody after all.  He will tell me how scary or sad those movies were. He will tell me how happy the time machine movies are- Meet the Robinsons, Mr. Peabody and Sherman and Free Birds- " all the different time machines."  These make him happy. The struggle is expressing frustration and anger in a constructive way. As the girl in Fire Starter - things get burnt. 

The goal I am working on for  Robbie is to find successful coping methods which will ensure he can manage when I'm not able to take care of him. To harness his powers- like the super heroes do. The girl in Fire starter looks at objects and names them- clock, mantle, television- to calm her. Robbie uses- "counting the fingers" and breathing- to calm him. Just as with the girl in Fire Starter- sometimes this technique works, sometimes it doesn't. So while I wait for the home based therapy to restart-  I reflect on today.  There was severe anxiety. My house is getting painted. The windows were covered with this Dexter like wrap- making you feel a little claustrophobic. As the paint was sprayed, things got dark- due to the deep blue the kids and I chose. Most of the painters did not speak English. You could hear them talking to each other- but could not understand a word. I was asked to move my car, so they wouldn't get any paint on it. At that exact moment- Robbie came downstairs. He was agitated and wanted me to come upstairs with him. I explained , as calmly as I could, that I needed to move my car and would be available in 2 minutes.  2 minutes to someone on the spectrum can be an eternity. He did not accept my answer but agreed to come with me to " move the fucking car." " I hate the car. Fuck you. Oh no- I'm so sorry I said a bad word. I didn't mean to say a bad word. I love you. Do you love me? I hate you. I am making the angry face."  And so it goes. Until it stops- with tears and a "sad face" - expressions of regret and apologies. 

All of this reminds me of my house. The before, during and (almost) after of painting. How we all go through life- constantly trying to improve- whether its a process, how we handle situations or emotions- or just general upkeep. As a parent, I'm here to help Robbie control his Fire Starter Hulk behaviors and learn to incorporate behaviors that keep him calm and happy- like painting the old dry mustard color house to a deep calm blue. It's a process and I'm here for it - because I'm his mom and I love him no matter what.

The Spider-Verse

We went to see the new Spider man movie yesterday- myself and all three kids. It's an animated movie which shows multiple spider people- in multiple universes - all co existing- yet helping each other- while not even realizing it. I had a few realizations as we watched and I'm going to try and put them on paper - but it is a lot. 

Nicole Kidman comes on screen - pre movie these days- to talk about why we love movies. I'm attempting to paraphrase her dialogue- as it was so on point with what I'm about to write. "We all need this. The lights dim, we feel the sound, the emotion- takes us to another place."

I often wondered why Robbie is so obsessed with movies. Recently we changed his treatment plan to include a Psychiatrist. One of the first things she mentioned was that Robbie's sensory system processes very differently than most of ours do. Things are much more amplified. Sounds, smells, touch, taste- its all much more intense- or sometimes muted for him. This is why after a school day- he's mentally and physically exhausted. He needs his down time- to recalibrate.  This is something I am aware of but it does help to be reminded- especially as there is pressure to get him involved in activities outside of school- and outside of the home. He will start an activity - seem to love it- and suddenly not want to participate any longer. Buddy club, soccer, boxing, bowling, swimming- the list is endless. The one thing that had been consistent -and he always seemed to enjoy - was home based ABA- Therapy- which stopped around Covid.

 But back to movies- It makes sense to me for Robbie to love movies- it takes him out of his own racing thoughts and emotions and allows him to get into something else. This new Spiderman movie was so visually stimulating- for me - over stimulating- colors and shapes- a million things on he screen at once.  The emotions- happiness, fear, sadness, anger- its all there.  For Robbie- the most current struggle is expressing his emotions- or really even understanding them. The rest of us can articulate these things- or we go to therapy for help : )  He's growing up- which scares him. He gets frustrated and angry- which upsets him. He loves  his family -which calms him- for a minute. He wants hugs- just gently - but frequently. He needs to take slow deep breaths often. He speaks in small, short phrases. This was from this morning-

I'm tired  

I'm feeling better

I'm watch a movie 

I'm a watch a movie in my room

I'm tired 

I got a little frustrated

I feel better

I feel happy

I'm sorry I told you to shut up

Are you happy

You can't be happy

Robbie- it's ok to feel frustrated. It's ok to feel sad. It's ok to feel angry. It's ok to feel happy.  As one of my best friends pointed out to me- I am currently going through a similar range of emotions. After years of pushing down feelings so you can simply survive - it's suddenly a unique experience to feel everything. It can be overwhelming. The multi Spider- Verses - were overwhelming for me, but maybe for Robbie, he finds comfort in the escape. Shutting everything down- while eating his favorite food - popcorn and drinking his favorite drink - sprite. In a big comfortable chair- with his mom and siblings next to him. He knows he's safe. 

Two of my favorite lines from this movie-  the first from one spider person to another- 

                      " You and me-" "We're the same- in the most important ways."  

This is so true- we all have emotions, need friendships, love and to feel safe- it can just look a little different - for all of us :) 

From the mom to her son-

"Wherever you go from here, you have to promise to take care of that little boy for me. Make sure he never forgets where he came from. And he never doubts that he's loved. And he never lets anyone tell him that he doesn't belong there. You have to promise."

   Robbie- I 've got you - you're safe here and we'll figure it out - together- along with the ABA therapist, home counselor , psychiatrist, neurologist  and primary care physician -   No one person can do it all- not even Spiderman :) 

I don't want you to get old, and death and dying

Ageing- by definition is the process of being older,,,,,, Here is a tough one. Robbie has a thing .... about getting "old". He doesn't like grey hair- and will let me know when mine is showing- (Thanks Robbie - lol)  In reality - it scares him.  He watched some video years ago showing a boy getting grounded for naughty behavior. In this cartoon  the boy is grounded for years. He ages- gets older and ends up dying - in his bedroom.  This video clip was a bit jarring as the man passed in Robbie's favorite place- his bedroom.

For me personally- this is problematic on so many levels. First- I don't want my son to be afraid of getting older.  Second- I work in Hospice- and I don't want anyone to fear death- as part of my job is to ease that fear. Third- and hardest to discuss- my mom has cancer. She's doing amazingly well-after a big scare- but as a family we talk about it. 

While I have explained all these things to my children- especially Robbie- his comprehension is limited. He is a 6 foot tall, 240 pound 17 year old but mentally he functions at a much younger level.   Robbie will draw picture after picture of his family as we all age. He specifically targets his grandparents- on both sides, his mom, his dad , and himself. He will draw the ageing process- and the gravestones for all.  Since the divorce he places us all by birth family - as that's where we would be.  I believe this is the way he is processing - as he says " the death and dying"  as he doesn't have the exact words to say how he feels.

Grey hair can be covered (every 4-6 weeks) but we all get older and eventually we die. In simple terms - it is the circle of life but when it touches you - it can be so hard to articulate. Imagine you can't say the words?  Thankfully he can draw the pictures- and I can always dye my hair :)