“My anxiety keeps trying to push through the boundaries of medication and deep breathing.
Sometimes it succeeds.”
Choices
MASH and Autism
I have fond memories of laying on the living room floor watching MASH with my Dad when I was little. My husband spent 23 years in the military so he’s a big MASH fan. My kids surprisingly love it too. But what does MASH have to do with Autism?
My husband found a book written by the actor who plays Father Mulcahey in the MASH series. It turns out, he and his wife raised a son with Autism. The book details their struggles to find answers and help for him.
If you follow me on Goodreads- or even here for that matter, you’ll know I read a lot. Last year’s number of books read was 108. But there is one narrow genre of books I almost never read any more.
Books about Autism.
When our son first received his diagnoses I over indulged, and then the life that was being described within the pages of the books became all too real. I just couldn’t.
My husband encouraged me to read the book Mixed Blessings by William (Father Mulchey) and Barbara Christopher. So I read it.
Their journey started 50 years ago. I found the book both fascinating and horrifying as I read what they tried, what was recommended by professionals at the time, and how much dedication they put into trying to help their son.
But overwhelmingly? I found it unbelievably depressing to find that things haven’t changed all that much. That many of the things they struggled with- IEP’s, doctors, therapies, shear exhaustion- we are still dealing with these exact same issues 40 and 50 years later. I can’t tell you how heartbreaking this is to realize.
This is why I don’t read books on living with Autism.
Take Your Medicine And Other Self-Care Tips
“As parents of special needs children, we are preached a religion of self-care. We are told repeatedly we have to make time to take care of ourselves or we won’t be able to take care of anyone else. That’s all well and good, but when I was in the thick of the worst of special needs parenting having no idea what I was doing or how to make it through?
I wanted to punch every person who said that to me.”
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Judging A Right To Life or Death
“A couple of years ago, I took a college class entitled Death, Dying, and Bereavement. It was a fascinating class. We talked about different types of death, bereavement, and the act of dying. One of the topics covered was whether people should have the right to choose their death when they are terminally ill. I learned something really important from that class.”
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A Twist On Opening Presents Christmas Morning
What are your Christmas traditions? What makes your family belly laugh? The stuff of legends? Here’s one of ours.
Read more. . .
Who Are The People Behind Email Junk Mail??
This is a random topic I know. But I’ve been wondering, “Who are these people writing all this junk mail???
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Does Life Need the Antagonist Like a Good Book Does?
“I’ve been thinking a lot about the antagonist and protagonist lately. The antagonist makes things happen, decisions are made. Will the protagonist live up to their morals or make a mistake and have to try again?”
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How I Made It Through the Past 15 Years?
Yesterday, I spoke via Zoom to students and medical professionals from the University of Tennessee. The topic was, “What is it like raising my child with special needs.“ This is something I volunteer for regularly because it is so important to me that these young medical professionals have a small understanding of what is going on in the lives of the patients and families they see.
One of the questions I was asked was, “What do I do to be able to make it through the really bad times.” I thought that this was a really good topic for discussion here. Because if you have a special needs child, you deal with some really heavy things. Things that if you begin explaining to people who don’t experience things similar, will start slowly backing away and have a look of a deer caught in the headlights.
Our lives are different.
But we can still find beauty, peace, hope, and love even in the midst of the heartache and storm.
So what do I do that helps get me through?
My number one reliance is on God. When I reach that point where I can’t carry on, he has ALWAYS been there for me. He carries me through in sweet and miraculous ways. Like the time he actually sent someone to clean my bathrooms. I’m not making this up. He sent someone to do my most despised chore of all when I was at the end of my rope.
Finding, and making sure that I have things that bring me joy in my life is another thing that I hold tightly to. Fresh baked anything will always put a smile on my face. A good book, or British TV show brings a sense of calm to my soul I really relish. Playing or singing music, working in my garden to grow things of use and beauty. It makes me feel like I’ve really accomplished something and my soul rejoices in the beauty of what I have done.
Hot, long baths. This is my staple. When my children were small my husband had a very unpredictable work schedule. We also had very little money. Things people would think of for self-care, like going and getting a massage, shopping, girl’s nights out and vacations were very rarely something I could pull off. When you have kids like ours, even if you do have the money, finding a babysitter can be extremely problematic. So as soon as my kids were safely asleep I would grab a book and take a steaming hot bath. Water cools down? No problem, just add more hot water. I’m not sure I could have made it through if it weren’t for those baths. I have been known on occasion to take 3 hour baths.
Another lifeline was finding other people who were experiencing similar things. Parents who also had special needs children who had their own brand of unusual. One mom I know wore a football helmet every time she got in the car to protect herself from things being thrown at her while driving. I’m sure there was more than one second glass as she drove the freeways to and from appointments. But this is the kind of different we live in. Knowing that there are people out there that get why we do what we do, and can even top our story? It’s a God send. These are your people and your kid’s people.
So if you are wondering, “How can I make it through another day of this?” Try a few of these out. They helped me a lot.
Are You Heard, Seen and Known?
A universal need.
That’s what my social work classes call it. The human need to be heard, seen, and known. It was a central feature of my first grad school class. It’s something that has been in my thoughts a lot over the past 7 weeks. I’ve talked about it with my Mom, my friends, and taught a lesson about it at church.
And here is what I’ve found.
It’s true.
We need to know that someone, somewhere knows the real us. That we are seen for who we are. That our wants, needs, and desires are heard by someone.
One of the hardest parts of living through the pandemic has been a disconnect from the ways we usually get those needs met. Friends and family have had to social distance. Events and celebrations were canceled. I met with the sisters in my church and we discovered that all of us had been feeling very alone. We felt like no one understood us. Many had felt that maybe church wasn’t the place for them anymore, they were isolated and felt like they didn’t belong.
I watched as everyone drew a huge sigh of relief to discover that they weren’t alone. They hadn’t been the only one person thinking these crazy thoughts. They weren’t the only one struggling to find a way to meet these needs. Our hearts ached as we listened to our sisters tell their stories that we didn’t know were hiding beneath their pasted on smiles.
So we made a plan.
It’s just in its beginning stages. But we realized that somehow, some way, it was vital that each of us felt heard, seen, and known. We made plans and commitments, both individually and as a group, to do even just one percent better at reaching out to each other and checking in. Because if we all did one percent better, that one percent multiplies like compound interest.
It is a couple weeks later and I have reached out to a few women who were on my mind. Nothing earth shattering has happened, but they now know that someone, somewhere was thinking about them, and if that helps them feel even a little less alone, I have succeeded.
My Greatest Hope and My Greatest Fear
“Two and one half years.
That’s the amount of time I have left until my son turns 18. Every time I think about it, terror grips my heart.”
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