Work in Progress

Sometimes I get what I call, “Travised out”. Living it. Writing it. It’s a lot. If you’ve been following along, you probably understand. So today, I am going to write about me. My struggles. Why I consider myself a work in progress.

If you know me, you know that I am the glass is half full kind of person. But even I get it wrong. I try to tell our story in a positive way. I know that I have shared many of our experiences. I don’t name specific names and places when the treatment of Travis and our family left something to be desired. Time has passed since many of these experiences took place. My hope is that by expecting better, we motivated these names and places to do better. Be better.

There are also the times that our experiences brought tears to my eyes. Many teachers and providers in Travis’s life have taken the time to get to know him. And appreciate the unique individual he is. I am quick to name the names and places that bent over backwards to meet his needs. Like The Joshua School and Humanex Academy. Not only to give credit where credit is due, but also because some of my readers need to know that these places exist. Because they may be looking to meet the needs of their own child. Or have someone in their lives that they might want to share this information with.

I was reminded that I sometimes get it wrong a couple of weeks ago. One of my very best friends commented on my post. She said, “I’ve come to expect that when you say, “in looking at the website today”, that we are about to hear about another program that didn’t get Travis”. It occurred to me that I may be coming off as too negative.

Many names and places have got it wrong. But maybe I need to work on my delivery. My retelling of the experience is accurate, but I need to find a way of telling it that doesn’t make my reader think, oh, another program that did not get Travis. My writing is a work in progress.

I took on this project of writing our story for many reasons. My hope is that our friends and family might be learning more about our situation and have a better understanding. About our choices. Our beliefs. How we came to be the people we are today.

I am also writing our story for the general public. So that maybe through some of our experiences a reader may better understand when they witness a meltdown at the grocery store. And understand that it is not a teachable moment. If I reach even just one person, and that person shows compassion to a stranger that is struggling, then my writing is a success.

I have joined a couple of different Facebook support groups of moms with children on the spectrum. Recently a mom posted a story about her child having a meltdown at a store. Another woman came to her and asked her what she could do to help. She was so surprised that someone approached her and showed kindness that she started to cry. She said that had never happened before.

I read through several comments from the other moms. The consensus was, Wow! That is amazing. That has never happened to me. My hope is that I touch some one that has read my blog. And they become that person. The one that asks, “What can I do to help?”

But most of all, I am writing our story for other parents of children with disabilities. I hope they find their way to my blog. Maybe by sharing our stories they will see that they are not alone. We have many years of traveling a long and winding road with Travis. Maybe by telling our story we can straighten that path for others.

I also write about our experiences with obtaining services for Travis. This can help other parents of children with special needs learn what may be available, and how to find available services. But I also believe it is good for everyone reading to learn about obtaining services. To understand that it is not as easy as one might think. Individuals with disabilities cannot navigate this system. They need a strong advocate. Without an advocate their needs may not get met. Some may end up living on the street.

As we have been traveling this road, I have bumped into all sorts of people. I met a woman that worked at the gym I was attending. As women often do, we began to share about our children. She has a son on the spectrum. We exchanged phone numbers. Usually those numbers get lost in the shuffle. But she has called me a few times over the years. Asking me how to navigate social security disability. Asking me about living arrangements. We are still in touch. And she follows my blog.

One time I met another mom of a child on the spectrum at the hair salon. Again, as women often do, we ended up on the subject of our kids. Travis is considerably older than her child. She asked me a lot of great questions.

I met parents at support groups. And conferences. I received phone calls from a friend of a friend. Asking for advice on how to handle a situation they were experiencing.

My daughter, Corey, and a couple of my friends encouraged me to write a book. Told me that I could reach way more people that way. Writing a book seemed so overwhelming. So Corey told me to start with a blog. Writing would be easier a chunk at a time.

Or so it would seem. I find myself second guessing myself all the time. Not only about my writing, but also about my caregiving. There has been rough spots. Lots of them. And the truth is, for every one that I do write about, there are infinitely more that I don’t. (Like right now. I just got a text from Travis that he blocked me. Lol.)

It has been a particularly hard week of caregiving. Following too closely behind a previous hard week of caregiving. I am feeling out of sorts. I have not had a chance to refill my bucket. And it is bone dry.

A couple of days ago I was at the local card shop. My card selection at home has been depleted. So many of my friends and family members have been faced with illnesses, surgeries and loss of loved ones.

As I shop I am drawn to a book. “Hope for the Caregiver, Encouraging Words to Strengthen your Spirit”, by Peter Rosenberger. I pick it up and thumb through it. I turn it over. It’s fifteen dollars. I put it back on the shelf. And remind myself that I am there to shop for others. I wander through the store, picking out cards and gifts. But again, I am drawn to the book. I decide to get it. I do have a 20% off coupon after all.

Have you ever read a book just when you needed it’s message most? That was this book for me.

I know that I’ve written a bit about caregiving before. I’m sure I will bring it up again in the future. Because if you’re raising a child on the autism spectrum, no matter what level, you’re a caregiver. From birth on. Forever. In varying degrees.

I know many caregivers. Not just parents of kiddos with special needs. We are all probably going to be a caregiver of some sort at some point in our lives.

I highly recommend this book. I read most of it in the car on the way to our cabin Saturday morning. I do my best reading in the car. Because, well what else am I going to do?

I have spent many years trying to help Travis become the best version of Travis possible. Leaving, “No Stone Left Unturned”. Make him see that his life is worth living. Help him find some happiness. But I cannot change it and I cannot cure it. This is the message I received from this book.

I am a work in progress on so many levels.

I am a worrier. Even though I know it is pointless. You probably already know this, but I have a book of quotes. When I read a quote that moves me, that speaks to me, I write it in this book. Let’s take a look.

“Worrying is carrying tomorrow’s load with today’s strength - carrying two days at once. It is moving into tomorrow ahead of time. Worrying does not empty tomorrow of it’s sorrow; it empties today of it’s strength.” - Corrie ten Boom

“Worrying does not take away tomorrow’s troubles, it takes away today’s peace.” - Author Unknown

“Worrying is stupid. It’s like walking around with an umbrella waiting for it to rain.” - Wiz Khalifa

“Worrying is using your imagination to create something you don’t want.” - Abraham Hicks

In his book Rosenberger states, “Our minds will play tricks on us, as we indulge ourselves in horrific scenarios that get us worked up into a froth. How much control do we truly have over any of this? Admittedly, most of what we fret about is “fret worthy”, but it doesn’t change the fact that we are powerless over a great deal of it. If we can’t change it or cure it, then we certainly aren’t going to do much good worrying over it.”

Another theme of Rosenberger’s is the difference between being responsible and being obligated. This statement of his really resonated with me, “We push back against obligation by reminding ourselves that we are stewards not owners and by cultivating a servant’s heart.”

In other words, I need to change my thinking. Not see caregiving for a loved one as an obligation. I feel like I am headed in the right direction in my life as far as cultivating a servant’s heart. But still, I am a work in progress.

Rosenberger also reminded me through his writing that as a caregiver, I am going to make mistakes. His advice is to own it and grow from it. Others will also make mistakes. His advice is to not hold a grudge. Again, I am a work in progress.

An important message that I needed to hear is this one. Rosenberger says, “Understanding and accepting that a caregiver is powerless to make someone else happy or miserable is important to maintaining a healthy independence from the person receiving care. If your loved one is miserable, must you be? We can hate it for them. It can break our hearts. At the end of the day, however, we remain powerless to lift the burden from them.”

Rosenberger mentions that it is hard for caregivers to face reality. “Reality can be a tough companion at times, but it’s an honest friend.”

One of the hardest things for our family to cope with in caring for Travis is that he doesn’t express any appreciation. The biggest takeaway from this book for me is this statement from Rosenberger, “The one we care for may not recognize or even appreciate what we do on their behalf, and that’s okay - if we love them, we’re doing it for their benefit, not ours. Being angry while trying to care for them isn’t helpful or sustainable; it’s about keeping our hearts tender - while seeing their heart.

Keeping our hearts tender is not easy. Caregiving contains many flashpoints, and it’s all too easy to say or do hurtful things. We often find ourselves at the breaking point, and that makes it exponentially harder to focus on the relationship with our loved one, when our emotions are already fried. We can’t take for granted that the one we care for can understand our frustration.”

I know this. Did I say, work in progress? At least I’m working on it!! But I laughed out loud when Rosenberger said, “Regardless of how our loved one behaves, we never get a free pass to be an ass”.

Rosenberger talks about how we need to detach ourselves from our feelings and our loved one’s behavior. I have already told you how I accomplish that. I close my eyes and imagine myself putting on my “thick skin” coat, and zipping it all the way up. So all the unkind things that Travis is saying cannot get through and hurt me.

Rosenberger wants us to remember that our loved ones are not doing it to us. They are just doing it. He says, “Some level of impairment or personality issue is driving their behavior”.

Sometimes I need a reminder. And this book came at just the right time for me. And if you think about it, it cost way less than a therapist. So actually a good investment on my part.

Rosenberger talks quite a bit about caregivers needing to take care of themselves. That if we take better care of ourselves, we are better able to care for our loved ones. I have said this same thing in a past blog. I just need to do a better job of taking my own advice.

He compares it to what flight attendants tell us during their safety talk. In the event of an emergency, put your mask on first. Then help your loved ones.

I am writing my first draft of this blog while enjoying a cup of coffee at our cabin. We took a long-overdue snowmobile ride yesterday. The weather was perfect. As we were out in nature, taking in the beautiful scenery, I could feel my bucket refilling. I felt a much needed disconnect from the chaos of my world. We do not have cell phone coverage, Wifi, or television beyond Dvd’s at the cabin. I am recharging.

Because as soon as we get back in cell range my phone will start pinging. Unread texts and unheard voicemails coming through.

A day at the cabin started the refill process. But remember it was bone dry. So I am going to Sedona this weekend with some of my girlfriends. Because I need to fill my bucket some more. That is my story and I am sticking to it.

If you’re a caregiver in any capacity, buy the book. I wonder if Peter Rosenberger has a podcast?

“It is not enough to do, one must also become. I wish to be wiser, stronger, better. This thing that is me is incomplete. It is only the raw material with which I have to work. I want to make it better than I received it.” - Louis L’Amour, Jubal Sackett