SOAR Robbie SOAR

The Seneca Occupational and Adult Readiness (SOAR) program is meant to help students build career and life skills for real-world independence. While the program takes place inside Seneca High School, Robbie is quick to remind everyone that this is SOAR—not school. He is done with high school. He is a grown adult now, after all. At least, that’s what he tells me.

At SOAR, Robbie has jobs. Real ones. He works in the store they’ve created, carefully inventorying items and making coffee for teachers. In October, he began his first official rotation at the library—the job he has talked about for years. A quiet space. Surrounded by books and movies. Clear expectations. Specific tasks. It feels like a place made just for him, a place where his strengths can finally breathe.

The beginning was hard. The very first day, his anxiety took over. He refused to go and became aggressive. The first half of the year was heavy—filled with frequent aggressive incidents, both at school and at home. There were moments when everything felt fragile, uncertain, exhausting. But as we moved into the second half of the year, medication adjustments were made, and slowly—almost quietly—Robbie began to find his rhythm.

Tuesdays are library days now. There are field trips to ShopRite, where he practices life skills most people take for granted. He’s found unexpected enjoyment working in the cafeteria. He still struggles with the noise—“the kids are too loud,” he tells me—but he’s managing. And sometimes, managing is a huge win.

This year, he chose not to participate in Unified Basketball. That one was hard for me. I’ve always loved watching the team, loved seeing him be part of something so joyful and inclusive. But it was his decision. And he’s 19 years old. A grown adult—something he reminds me of often.

Watching him step into this next phase of life is equal parts terrifying and beautiful. There is grief for what was hard, relief for what is finally working, and hope—real hope—for what comes next. Independence doesn’t arrive all at once. For Robbie, it’s coming in pieces. And right now, that feels like enough.

Life Move Pretty Fast

“Life moves pretty fast. If you don't stop and look around once in a while, you could miss it.” – Ferris Bueller

That quote feels especially true right now. Somehow, Robbie has graduated from high school. My little boy, who once filled the house with Bee Movie references, is now 19 years old. Or as he likes to say, “I’m a grown adult.” And he’s right.

After graduation, Robbie had a job placement at a flower shop—two hours a week for four weeks. I half expected him to make reference to Bee Movie, but nope. He took the work seriously. His job coach told me he was a pleasure to have and an asset to the team. And Robbie himself said, “I love doing my job.”

Now, we’re looking ahead. This fall, Robbie will begin the SOAR program at Seneca, where he’ll stay until he’s 21. That’s only two years away. Honestly, the past few years have been such a whirlwind—complicated even more by the stress of divorce—that plans which should have made were not. Sitting with yet another attorney recently, I was reminded of the gaps. The truth is, there’s no roadmap. Just two parents who can’t even be in the same space together. And that’s something I carry my share of responsibility for.

But here’s the part I hold onto: Robbie has so many gifts. Give him a clear task, and he shines. His dream jobs have shifted—from making movies, to now working in a library (he loves quiet and avoids noise). At home, when he watches movies in his room, I can’t hear a sound. His senses are something else—vision sharper than average, hearing more acute than mine.

Sometimes I think: these are the traits of superheroes. Maybe, just maybe, programs like SOAR can help him develop his powers. Because the world could use more heroes like Robbie.

And maybe—if we stop and look around—we’ll see that autism isn’t a limitation, but a different kind of strength.

I miss my Mom

 Robbie and I had a conversation a few days ago- which prompted  me to write this blog.  " Mom are you happy? Your mom is in heaven. Do you miss your mom. It was a long time ago - when I was a little kid. "   ( see picture in blog) but he went on to say -" I'm sorry about the yelling and it's my fault. I'm sorry you're not my dads wife anymore. Are we still a family?"  Of course it wasn't your fault and we are still a family. Our family looks differently than it did a few years ago- but sometimes that happens.  I love you. Your Dad loves you.  I miss my Mom but I am really happy. 

I really miss my Mom. It may sound ridiculous to say, of course I miss my mom. What I didn't expect is the gravity of the loss.  The anger and feeling of separation from the family closest to me.  The love I have for my sister and brother - there are no words. They have been a constant source of  support throughout my life and especially throughout the  journey of our mothers sickness and death. Yet - it has been challenging for all of us to feel connected in the way we always have. Maybe because of the loss of our mother- the glue that kept our family together.  Maybe because we can no longer complain about how harsh her comments were-  and yet always true - lol!!  We all just miss her.   The intense emptiness of missing my person- the one I could confide in. The one who - literally- was always so annoyingly right. The one who supported me the best way she could through a difficult marriage and helped me through a painful divorce.  I miss her.

 What happens when I find my new person?  I wish I could talk to her. I want her to meet him. I want her to know I'm ok. Of course- being honest- there is always the voice in the back of my head regarding Robbie. He will be with me- long term.  Special needs children are with you in a different way than other children. Robbie won't go off to college, or meet a spouse and have a family of his own. He will have his own life, but it will not be without unique challenges.  This is something she used to say to me- and I would get so angry- yet again, she was right.

Tonight - yet again Robbie asked me if I was ok. Do I miss my mom. Your mom is in heaven. I am here for you Mom.  After reassuring him that I am happy and asking how he is feeling- His response was perfect- Everyone loves me- the teachers - my Shawnee teachers- they say I'm the best.  I am happy Mom. My Gama is in heaven.  Which makes my heart so full and is completely true. : ) 

There's a lot of noise in my head

 One of the many skills Robbie is continuing to develop is the ability to express himself. This is something many us - on the autism spectrum or not- struggle with. For Robbie- much of his communication is relied in terms of movie lines or scene.  " The movies are in my head. They make a lot of noise. I say no- not again and they say yes again Robbie. Too many things in my head."  

Robbie being able to articulate this, calmly and clearly is the most important skill of all. I am so proud of how far he's come. We talked about Inside Out 2 and the additional emotions that were added to Reilly as she became a teenager.  Anxiety, Envy, Embarrassment and Ennui - a feeling of tiredness and boredom- were added to Anger, Fear, Disgust, Joy and sadness.   Anxiety is an emotion he has struggled with for as long as I can remember. Much of it was due to not being able to express himself. 

I should preface this by explaining how the conversation started.  Robbie came into my office where I was working, and showed me his " white shirt had a hole."  Robbie wears white t-shirts to bed with pajama bottoms every night.  Together we examined the hole. It was slightly larger than a pin hole. So small that sewing it would make it look worse. My first response was to say it's no big deal and lets just ignore it- but looking at his face I determined that wasn't the best response. He was filled with anxiety over the small hole on the back of his sleep shirt. Together we discussed what to do. Should we try to sew it? Should we put it back in his drawer? Should we discard it and order some new white t-shirts?  The third option was decided and together we picked out an inexpensive pack of Hanes XXL t-shirts from amazon.  Problem number one solved - but at that time he sat on the couch and spoke about the noise in his head.  Problem number two. 

As I listened to Robbie I realized , like many of us, he just needed to be heard. He needed my undivided attention as he explained his feelings. Once we spoke about it, he had let the emotions out of his head through his mouth.  We took a deep breathe together, and of course- " Can I have a hug?" Which is an ask that occurs multiple times throughout the day.  Then he looked at me and said- " your mom is dead. She is in heaven. Do you miss her?"  He does this often since she passed in March, and it takes my breathe away for a second almost every time.  Yes Robbie I do miss her, but I know she is watching us and feeling joy at how far you've come.

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 :) 

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."

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.