Autism Awareness

An Ordinary Mom's Musings > Autism Awareness

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.

I Can’t Tell What You’re Saying

I Can’t Tell What You’re Saying

“Last week I was in Walmart with my son. As we waited in line to check out I was noticing the amount of people wearing facial masks and thinking, ”I really miss seeing people’s smiles, I can’t tell if how they are feeling with their face under a mask.”

And then it hit me.

This is how my son has viewed the world.”

Read more. . .

Our Changing World: Special Needs Children

Our Changing World: Special Needs Children

“I don’t have any magic advice. For those of you dealing with five. Just know that those of us at 13? We’re here for you. We’ll help you through.”
Read more. . .

It Is Important That It’s His Story To Tell

It Is Important That It’s His Story To Tell

“I feel it’s important to note that I am a parent of a child with Autism. I can tell you what my experiences are trying to Parent a child with Autism and a host of other medical diagnosis. But I can’t speak for him. He is going to have to learn to do that for himself.” Read more. . .

Dear Parents: Kindness Begins With You

Dear Parents: Kindness Begins With You

That child that hasn’t been nice to your child? Maybe give him a second chance? Maybe something else is going on than being a brat. Does this child look different? Does he sound different? Chances are that a lot of children with hidden disabilities don’t appear to have anything wrong with them. So they are judged for the things that they might not be able to control. They are shunned for behaviors that might be different from the norm. You never know what battle people might be fighting. Read more…

Update: Life During and After 30 Days Respite

Update: Life During and After 30 Days Respite

In my post, “The Hard Things, The Necessary Things,” I spoke about how we were sending our child away for awhile. This was so that we could have 30 days respite. The last year or so has been really tough on all of us. But it isn’t easy to let your child go or to know that you have made this decision to send him away.

Week One

The first week of respite, honestly was a lot of coming to terms with the situation. There was a lot of Netflix binging and escaping into books. I struggled to find any energy to be able to accomplish life. It was our daughter’s last week of summer before school started. I really felt bad that I couldn’t be a fun Mom and go do things with her. It took everything I had just to get through the day. While I do struggle with anxiety and depression, this was more physical, mental, and emotional weariness. I could no longer keep pushing myself forward with.

Our son called crying and begging me to come to visit the second day he was there. I couldn’t because I had appointments- some of which were for him. But he seemed to settle in after that.

Week Two

The second week, our daughter started school and I found myself alone at home. I think I started to realize that week just how much his medical care takes, beyond all of the issues with behavior with Autism. I started to breathe again during that second week.  We are SO grateful for this time we have had to nourish ourselves.

At least until “the” phone call from him. One of my biggest concerns about sending him away was that I couldn’t keep him safe. One day he called and told me about his trip to the park that day. He didn’t want to go on a walk with the caregiver and the other child. So she locked him in the car with the windows rolled up on a hot day and took a walk with the other child. To say I was concerned would be putting it mildly. The caregiver was placed on leave immediately and a CPS investigation started. As it seemed isolated with the one caregiver and she was no longer there, we decided to keep him there after visiting him and talking with the Director. We went to see him at least once a week and talked to him almost every day during his stay.

Week Three

Week three it started dawning on me that he was going to be home soon. I was in the middle of lots of IEP negotiations during this time as well. I spent that week riddled with anxiety. The respite place where our son was staying was letting him watch a LOT of TV. I was worried about him transitioning back home and him not getting as much TV. Not getting TV one of his biggest triggers.

Week Four

Week four we spent trying to make the most of our remaining few days. Dinner and a movie, games, downtime. We installed solid core doors and doorknobs with a keypad on them on 2 of the bedroom doors. There should be no more holes in these doors no matter how mad he gets. Week four was a calmer week.

After Respite

He’s been home for a week and a half now. Although the school has agreed to place him out of district at a private school, we are still waiting on the particulars of which one, so he is home with me all day. We are trying to maintain our normal schedule as much as possible so that when we get school figured out we can hopefully get him into the groove with as little disruption as possible.

So far he has transitioned home well. We have had hardly any physical behaviors and things seem to be going well. We are all much calmer. Not so keyed up and just reacting. We have other trials on our horizon. But for now, we’ll appreciate this win.

I didn’t know how this would go. I was afraid of letting go. But after having those 30 days to concentrate on ourselves and each other, I think we are all doing better than we were before went away for respite.

*Extended Respite Care was provided by the State of Washington and their Medicaid/Waiver program without which this would not have been possible. This provides a way for people with disabilities to stay in the home and caregivers to not get completely burnt out.

Autism Is Never Going Away Video~ My Favorite Things

This week for my Video Favorite Things, I’m pulling out of the archives a video that I made about Autism and reposting it here.

Autism is not one of my favorite things. But it is part of one of my favorite people. This is one of the most honest things I have ever written, but it was shared with the hope that other parents with children with Autism will know that they are not alone. Please share.