Thursday, August 21, 2014

Transition Check-In: Something Between Us


015

There’s a ride at Disneyland that most of us have probably been on – The Haunted Mansion. I loved it from beginning to end, even though the first few times I went on it I was scared (but, you know, in a fun way). I always loved the end of the ride when the projector ghost would show up in your carriage. “Beware of hitch-hiking ghosts!” the narrator would say. My siblings and friends (and later, my sons) and I would sit as far apart as we could to make room for the ghost. We’d lean into him or pat his head.

So, metaphorically, I like to think that we should always leave room for something between us (besides ghosts). Like fun memories. Shared dreams. Phone calls and texts. A strong connection. And love.
*
I was 19 years old when I decided to move into my own apartment. I had a roommate, one of my coworkers at the restaurant where I waited tables, and we split the bills. I was also taking a full load of college classes. My parents did not exhibit much confidence in me when I moved out, and I’m sure they breathed a sigh of relief when a few months went by and I hadn’t asked them for any money, when it became apparent that I was swimming and not sinking.

Now, 24 years later, it has been six weeks since Nigel moved into a supported living apartment, and I am just beginning to exhale. Last year at this same time, he moved into a supported living home, a euphemism for group home, and within the first two weeks it was obvious that the move had been a huge mistake, that it was entirely the wrong placement for him for a multitude of reasons. He was back home within two months.

So when plans were being made for Nigel to move into the apartment, there was certainly some amount of concern on everyone’s part. His ever-expanding vocabulary belies him, as his emotional age has plateaued at around age 11 or 12, and he requires assistance.  He receives daily support from a local organization called Living Opportunities. They pick him up and take him grocery shopping with his food stamps, they take him to doctor appointments, help him do laundry, and remind him about hygiene and taking his meds. I pay all of his bills out of his Social Security money, for which I am the representative payee. He receives “walking around” money in cash every week, and in a couple of months, we may progress to a debit card. He rides his bike to and from his GED class at Goodwill a few times a week and is doing well with that. Once a week I go to his place to make dinner with him or take him to a restaurant, and on Saturdays he comes to the house to spend the night with his family.

Two weeks ago I discovered that he had used up a month’s worth of food stamps in two weeks. His support staff only take him to the grocery store and help him through the process, but they do not tell him what or how much to buy. It pained me to see the bottles of an 8-pack of red Gatorade strewn around the living room, along with the empty red Jell-O cups, Chips Ahoy! bags, popsicle wrappers, and yes, a box of Twinkies. God only knows what he bought and consumed that I didn’t see.
So after some by-no-means-gentle admonishments, I was relieved when I discovered that he still had some of the decent food that he had bought with me on his first grocery trip. He had plenty of bread and butter for toast. He had cereal and milk, eggs, carrots and apples. So I told him that he had to use his weekly cash amount to buy healthy food for dinner instead of craft supplies, Lego, parts of his Halloween costume that he has been planning for four months, and Slurpees.

He seemed to understand. The situation was not dire, and I was not going to bail him out. We are now six days away from his next food stamp payment, and he’s going to make it. Last week when I went to his place for our weekly visit, I asked him how he felt things were going being in his own place, and in his wonderful, inflection-less voice he said, “Well…I’m learning a lot.”
*
Nigel and I don’t talk every day (per his request), but we do text. And I find that when I go to see him, there is this unspoken understanding between us. He is calmer, content with his autonomy. I am calmer, reclaiming mine for the first time in almost twenty years. There is of course the parent-child connection that will always be there. But there is something else between us. There’s a sense of joint validation that we have come through something together. And while we have a great deal more on this road ahead of us, and at the same time are obviously taking steps in our own directions, that shared experience keeps us connected as we move forward.

I’m sure there will be more debacles similar to the food stamp crisis, more stumbles as he forges his own path. More learning to do. But he will be all right, Twinkies and all.

*

Tanya Savko is a writer, blogger, and mother of two sons, one with autism, epilepsy, and bipolar. She founded TeenAutism.com in 2008 as a way to connect with other autism parents. In 2010 she published her first novel, Slip, about a single parent raising a child with autism. Tanya is the Admin Assistant for Families for Community. She also blogs at TanyaSavko.com and lives in southern Oregon, where she tries to find time to work on her next novel when she's not out hiking, rafting, or wine tasting. 

Connect with her:
Facebook |Twitter | Goodreads

 

Wednesday, July 23, 2014

Love Thy Neighbor, Kill Thy Brother

Last night I dreamed of my neighbor who has not been well in quite some time.  I've been wanting to visit her ...prepare a meal for her family.  O.k. Who am I kidding? I know I don't have time for that. So last week, I bought her a beautiful plant.  Since she was in my dream last night, I knew that I had to visit her --today. No excuses.

The boys are having a snack and watching Sponge Bob, together, almost peacefully.  I think it's a good time for me to make a quick exit to my neighbor's house. My mom is at home, of course.  I'm going over for 15 or 20 minutes.  They will be fine. No problem, right? Right?

As I am leaving Red whines, "But where are you going? I want to come."
Really?
"Come on dude.  I'll only be gone for a few minutes. I don't know exactly how she's doing.  I want to visit her by myself."
Why I need to explain this...I have no idea.
"But I want to pray for her!"
"Great. You can pray for her from right here.  I'll be right back."

15 minutes later, there is a ring at my neighbor's door.  Guess who? Not one, but both boys.  They are panting as if they've been running.  I notice an object in Blue's hand. It's a bar-b-q spatula -a large one.

"I'm sorry mom but I just wanted to come over here and see Ms. C. and Blue was chasing me," Red says panting and trembling.
"Mom! You told him not to come over here, so I was trying to stop him! He just doesn't listen!"

What.the.hell?!
Really?
Imagine these two huge teenage boys, chasing each other across the street, one with a spatula in his hand, yelling at his older brother, "GO.BACK.HOME! You need to learn how to listen!"

My neighbor's husband is also standing at the door.  Yeah. I'm slightly mortified.
I separate the boys and ask Blue to please go home.  I can't send them both together, obviously. Blue objects at first, but finally agrees to go.

Well, neighbor! I hope you were up for a little excitement!  No, that's not just your pain meds kicking in.  That's my real life crazy, following me to your house!

She invites Red in.  She tells him to calm down.  He prays with her.  She is touched by his gesture.  It was a beautiful moment actually.  After a totally ludicrous one.

We make a quick exit.  I return across the street where Blue is waiting ...spatula still in hand.

He proceeds to tell me loudly how much of an idiot his brother is - and that was one of the nicer words he used.  Oh, this is before I can even make it through the front door.  Oh yeah.  He is yelling and swearing loud enough for all of the neighbors to hear in the front yard.

The only thing that finally shut him down was when I told him that the neighbors just might call the cops because he is disturbing the peace!

After things simmer down, I remain in the front yard to do a little raking, and weeding.  I only had 2 neighbors stop their cars to ask why I was breaking my back when I have 2 big teenage boys who live here, for free!

Oh neighbors ...you have no idea.


Watching the Sunset after the drama
amethyst & reiki gemstones for protection from the crazy.
Believe it or not I'm at peace.

*

Karen Wesley Weaver is a mother, Autism Advocate, writer and editor at http://www.ConfessionsofAnAspergersMom.blogspot.com. She shares her stories with humor and grace about raising her children. She has 2 teen boys with Asperger's.  Karen is the Admin. for "Confessions of an Aspergers Mom" on Facebook. She also runs a private online support community where parents and those on the spectrum meet, exchange ideas, information, and socialize. She has written for Autism Speaks, and many other autism/parenting blogs. One of her stories will be shared in a book, Easy to Love, Hard to Raise - Children with Invisible Disabilities, to be published later this year. She has also shared her stories and opinions with various online media outlets, including The Huffington Post and Parenting.com.

Tuesday, June 10, 2014

Valuable Lives


When my grandparents speak of CB it always results with a pained look, a head shake and an inaudible tsk-tsk accompanied by something like... "It's such a shame,"  "You don't deserve to be saddled with this responsibility,"  "Life is so unfair."  For the past sixteen years, the general vibe from CB's great-grandparents is love and support, but love and support steeped in pity and remorse.  
I love my grandparents dearly and know that they can not transcend the times in which they were born and raised.  Their generation saw cognitive disabilities as a complete tragedy and few children like CB escaped a life of institutionalization.  The fact is, if it were anyone but them (or someone from their generation) I would be put off by the implications that drench their statements, but I know what they are trying to convey and it comes from a place of compassion.   I had always believed that their views were remnants of decades past, but the truth is that no matter how politically correct and progressive we Americans portray ourselves present day, we continue to assign value to human beings.
I never put much thought into these things until I found myself on the other side of the fishbowl, loving someone whose life isn't as "valued" as those who fall under the umbrella of the Great Bell Curve.   With this experience, I hold one conviction:  I believe every human here on earth has a purpose, a life, a contribution to make, and (unless that person is a horrendous psychopathic, murdering deviant) we should not dismiss someone's quality of life because their cognitive capacity is "less than" the norm.
But we do. And if you follow the news you know the stories of which I speak.  
It is true that CB will not get a typical education. She will not get married and bear children thus carrying on her next generation.  She will not write great works, cure cancer, or engage in philanthropic activities that give back to her local community.  She will not leave her legacy in the traditional ways.  Does that make her life a shame?  A burden?  A pity or waste?  Dare I say... meaningless?  

CB may not have a traditional legacy but it's always been my opinion that to love and be loved in a way that transforms another is a life with merit, with purpose, with value.  CB has touched lives, changed lives, because she has lived.  Because she is who she is.  True, there may be little to no intentionality behind her effect on others, but I don't think that matters.  Throw a stone, see a ripple.  I do not care who you are or what you can and can't do, if you're here in this world, you have thrown a rock into a pool and you make a ripple. Hopefully a ripple that brings goodness and kindness, hope and joy.

I unfortunately know of many TYPICAL or "normal" people who lead lives that are closer approximations of "meaningless" than my daughter's.  Lives that take up space rather than truly live, give, and love.  Lives that are wasted with drugs or chasing materialism; lives of self-involvement, shallow pursuits, bitterness, and lack of connection, when they have a chance to do so much more.  Those people, in my mind, are "normal" but worth far more of my pity than a little girl who stims and hums in her room.  CB has no choice as to the kind of life she lives.  Others do, and what they choose to do with it sometimes is the real shame.  


Our lives can be measured by many things - contributions, offspring, legacies, good works left behind, kind deeds that change the destinies of others.   The greatest Litmus test of all, for me at least, is if you have loved and been loved.  Not necessarily by the masses... perhaps just by one.  Held to this standard, CB's life is not without merit.  It is a life to be proud of.  A life that matters.  She has certainly transformed me, her father, her three sisters, her stepdad, and her grandparents.  For me, my decision to write, my decisions to help others, the atoms which make up every tangible and intangible part of me have been ever altered because of CB and therefore every life I touch in a remotely positive way can be traced back to CB's influence.  Multiply that by the good that radiates from all those I listed and the ripples continue.
Whether life ends at our death or continues on after our bodies fail us, I will never agree with the assertion or subtle implication that CB's life, or any other person's life with different cognitive abilities, does not have the ability to impact others, leave a legacy or hold value.  There are things in this world that are a great pity, but CB's disabilities are certainly far from one of them.  I am not burdened.  It is okay to wish that she was a "regular kid" and even to feel the shadow of that loss, but pity does not have a place here.  Now, don't get me wrong - life for CB, me, and our family is not without chronic challenge and sacrifice.  However, I can't go into that realm of determining if life is fair or unfair because quite frankly - life simply "is."  WE, as humans, place labels of "fair and unfair,"  "right and wrong,"  "value and pity" on everyone and everything when really life and all the drama it conjures simply "is."  How I chose to understand it, chose to face it, learn from it, make something productive from it is up to me, not the fates.  
At the end of the day, if you measure Quality of Life by happiness alone, I can honestly say all 4 of my girls have won the lottery.  They all are here for their own purposes, will discover their gifts, will throw their own stones into the pool and I'll watch each of those ripples with awe and pride.  Especially the one who never knew the power and significance of the stone she threw.  A stone that others might say didn't matter, but because I listened closely, I heard it splash.  Because I watched closely, I saw the ripple stretch out beyond the horizon.... where it endures across forever.
*
 
Alicia D. blogs about raising four girls, the eldest of whom is a teen with multiple disabilities. You can find her at Lost in Holland, where this post was originally published.

Monday, May 26, 2014

Transition Check-In: The Keys to Supported Independence

If I had written this post just one week ago, it would have been titled “Transition Check-In: The Waiting Game,” because that’s where we were, where we have been, where we thought we would be for at least year two years, waiting for Nigel’s HUD to go into effect. I thought we would have to wait for that to happen before we could set him up in his own apartment with support from Living Opportunities, a local nonprofit organization that helps adults with developmental disabilities to live their lives as independently as possible, while offering assistance in any form that is needed. They have already begun to provide services for Nigel while he is still living in my home, taking him to appointments, helping him to organize his living space and his time. They are very professional and specially trained to handle various needs, personalities, and preferences. They focus on presuming competence and facilitating independence. In fact, they even provide services for a few people who do not communicate with speech, but with supports in place are able to be in their own apartments. Without this support they would undoubtedly be placed in group homes, sharing a small room with another adult. It’s amazing and wonderful what Living Opportunities does. We are so blessed to have this organization in our area.

Last summer, when I moved Nigel back from the group home, I was advised to apply and get him on the waiting list for HUD, which I did. I didn’t realize that in doing so, he would also be on the waiting list for several apartment complexes in our area that offer certain units for low-income tenants who are waiting for their HUD approval. A couple of weeks ago, I received a letter in the mail that one of these units was available.

I called the Housing Authority office to let them know that we were interested, and they said that they had sent that letter out to about 20 people. With Nigel, I drove by the place anyway, just to see what the complex looked like. It was new, quiet, and definitely not Crackville. Nigel agreed that it looked like a nice place to live. Unfortunately I had a very busy week and was only able to call about the apartment the day before the end date for applications, so I figured the apartment would go to someone else, and we would wait for another one of these apartments to become available.

But a week later, the Housing Authority office called me. They said that Nigel was next in line. I asked if that meant there was one person ahead of him and they said, No, he’s it. He’s the next one eligible to apply if he still wants to. And the very next day we went down to that office and filled out the application with me as the co-signer.

Four days later, they called and said the apartment was his! We are going in next Monday to sign the lease and get the keys, the keys to Nigel’s autonomy that he needs and so rightly deserves. The keys to the space for his massive Lego collection, the privacy to act out (in costume) scenes from his favorite movies, and the satisfaction of not having his mother telling him when to shower or take his meds (the support providers will do that when they check in on him every day). (!!!!) And these same keys are also the keys to my relief, to being able to focus on Aidan’s last year of high school next year, and to regaining my sense of self that has been shelved for so long I don’t even know what that self was. These are the keys to rediscovering her.

It’s another big step, probably the biggest, in Nigel’s journey to and through adulthood, a journey to which I have devoted much time and energy. He will have all the support he needs through Living Opportunities, he will spend time with family members at least twice a week, and I am always a text or call away.

Moving Day is in three weeks, when the rubber really does meet the road. It’s the start of something that I would have thought impossible just a few short years ago. But if I look at his trajectory, the journey we’ve been on to get here, every challenge he’s faced or taken on, I shouldn’t be surprised. This is the boy who, at the age of five, could not say his name when a doctor asked. This is the boy who could not go into stores, movie theaters, and restaurants because his sensory issues overwhelmed him. This is the teen who needed a modified diploma because, although he understood the material, he could not handle the volume of work.

But he made it through high school, and he walked across the stage to receive that diploma while his classmates cheered. He was voted “Most Likely to Survive a Zombie Apocalypse” by his senior class. He spent time getting to know a girl and he asked her to prom and she said yes.

When he said, two weeks ago, I don’t think I’m ready for this, I told him, “You can do this, Nigel.” And with the supports in place, I know he will.

Image courtesy of Wikipedia
*
Tanya Savko is a writer, blogger, and mother of two sons, one with autism, epilepsy, and bipolar. She founded TeenAutism.com in 2008 as a way to connect with other autism parents. In 2010 she published her first novel, Slip, about a single parent raising a child with autism. Tanya is the Admin Assistant for Families for Community. She also blogs at TanyaSavko.com and lives in southern Oregon, where she tries to find time to work on her next novel when she's not out hiking, rafting, or wine tasting.
Connect with her:
Facebook |Twitter | Goodreads
 
Related Posts Plugin for WordPress, Blogger...