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 :) 

Absolutely nothing to do with Autism...........I love what I do 💗 Hospice

 This post has absolutely nothing to do with Autism..... Or does it?   The intention of this post was to discuss what I do for a living and describe why I love it so much. As I thought about it - everything clearly comes back to autism in some form or another - at least for me.  I work for Bayada Home Health care-a company who has home health care, hospice, live in care, private duty home health aids, pediatric nursing, habilitation - you name it. When I started working for Bayada I was hired as a marketing manager for home health care. After years in pharmaceutical sales and a short time working for a hospice company.  While I loved home health care  the habilitation service line really interested me- as it deals with special needs children- many who have autism. I asked a lot of questions and inquired as to how I could work in that division. Unfortunately that division was not anywhere local to my home.  And the more I thought about it , the more I decided it might be too taxing on me to work in a field that is so incredibly close to my heart. I'd never be able to get away from it. My mind would always stray back to Robbie - his life and his needs. These things are already on my mind every single day.  What will his future behold? Who will care for him when he grows old and I am long gone.

Fast forward to Covid..... I was furloughed for a few months.  A new position opened in hospice. Since I'd had some experience in that arena it seemed to be an easy transition. I loved the new role and all the wonderful people I had the pleasure of working with.  I did not know at that the time - this field would fill my heart in a completely new way. 

After a year I transitioned into a care integration position. I am able to help families navigate the different service lines and benefits available to them.  Specifically-  home health care to hospice care.  Many will say- how can you work in that field?  Hospice must be so sad. My response has been steadfast- I am blessed to be able to explain the amazing benefit of hospice to patients and families that need it. Let's face it- we are all dying at some point. It is the circle of life.  We pay into Medicare for so many years and very few take advantage of this benefit of hospice. Nursing care - available whenever you need it, home health aids to bath or change undergarments for a family member or loved one -and provide dignity.  The cost of supplies live adult diapers, wipes, gloves, creams - and durable medical equipment. Medications and the ability to ease anxiety and pain. A social worker and spiritual counselor to provide grief support and help explain the dying process- all with in your home.  Yes- I'm on my soapbox.  These things are gifts. The people in these roles are truly angels. My heart is full every single day as I speak to families and ease their fears of the dreaded H word. I help families get services they need- and many times never knew existed.  I am the lucky one.  Never have I been so fulfilled in a career.  As my own parents are aging , my oldest son- with autism's future is uncertain, and I work towards balance through an unpleasant divorce -I am lucky to love what I do- and know that what I do matters.  I am so grateful for that as I walk the path ahead of me.

                     We love what we do-💗 its our tag line- but  it's true!

The Weight of it all

 Have you ever felt so overwhelmed with life and then someone says something or does something- at exactly the right moment - and you exhale.............. ? That feeling has happened too many times as of late- at  least the feeling that the weight of the world is on my shoulders.  But- there have been a few times that Robbie- out of all three kids has been the one to say exactly the right thing. That thing that makes me exhale and know things will be alright.  Sometimes its just a comment that is factually accurate- as many with Autism Spectrum disorder are very literal. On Monday- " Hey Robbie- it's Monday- you've got school today."   " Mom, I love the blue school, but I hate Monday's."     Agreed kid!

 When I pack the blue water bottle in his backpack and the black one in his younger brothers - from  my youngest- I'll hear - "you packed me the wrong water bottle!"  But from Robbie- " It's ok Mom, people make mistakes." 

And- my absolute favorite-  " can I have a hug?"   Yes Robbie- you can always have a hug- moms need those too :) 

Problem solving....

 Problem solving is the process of finding solutions to difficult or complex issues. Problem solving can also be finding a solution to the most basic issue of need. One of the things I am most impressed about with Robbie is his ability to solve his own problems. This could mean simply - bringing his laundry downstairs, so his mom can wash it.  Or making himself a snack or even a meal. As of late he has an obsession with socks. He loves socks that have candy listed on them- his favorite being the Skittles socks he was given last year. They have become thin at the toes from constant wear and on occasion a small hole develops. Over the summer he would ask me to sew them for him. He would sit patiently by my side observing the steps and ensuring I did a good enough job. This week he had a small hole in his Twizzlers socks. He had asked for me to sew them but I had not gotten the opportunity to do so. Early Saturday morning I came down to the kitchen to make coffee and discovered Robbie  with our small sewing kit. He had matched the appropriate color- red and had the needle. At first glance it appeared he had threaded the needle and tied the knot at the end. After inspecting it I noticed he had tied a knot at the base of the needle. When I asked him why- he explained he could not get the thread through the tiny hole at the top of the needle. I was incredibly impressed- Why you might ask?  Robbie did not wake me up to help him. He found the materials he needed and tried his best to solve the problem. While he couldn't thread the needle on his own- he came up with another solution on how to address the problem. I ended up threading the needle and he sewed the sock on his own. He wanted to do it- and he did a better job than I would have!   This many seem like a trivial event but when my 8 year old cried that the socks he had didn't match. My response was- how do you solve that problem-? He was stumped. I explained- go to your sock drawer and find a match- that's what your brother- who has autism by the way- would do :) 

The Importance of Friends

High school is a completely new world- especially coming from a very small middle school. The initial decision was for Robbie to go to the high school where his Dad was a teacher- not the local high school- where his friends would be going..  They have a fantastic Autism program. He would go with his Dad - as there wouldn't be transportation.  The hope was- he would flourish- be happy and make new friends. The reality was- he said he hated it- every single day. He missed his friends. It was too big and unfamiliar.  His teacher was amazing- I know her personally - but he would say how he hated everything about that school. I won't get specific - because the comments were ugly and out of frustration and missing all things that made him comfortable.  He wanted to go to the blue school- not the red one. The one where the people he knew were going.  The fact that  his parents are going through a divorce and living separately does not help matters either.   So-......after months of him verbalizing his frustration- and a few other events in between- the transfer took place.

The bus picks him up in the morning- with 2 of his friends. He is in the blue school - as he requested. He no longer complains. He goes to school - happily.  He comes home content. He gets himself up and ready in the morning- without me having to plead or monitor whether his shoes are on. He's ready, he's happy, he is where he needs to be.  The importance of relationships- for most people is so obvious. How it was over looked for Robbie- really sticks with me. He doesn't need a lot of social time. He has his friends over twice a year.  The annual birthday party and more recently around Halloween.  They come to the house, eat pizza, watch a few minutes of a movie, have cake and go home.  That's all he wants and that's all he needs- but he does need it. To be connected to people. To have friends.

The best comment I've gotten so far is the following- as it makes my heart happy and is an appropriate statement for a 16 year old- " Mom- I love the blue school, my heart feels better-  but I hate all the work."

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."