Survival mode (part 1)

From November 2017 until about August 2018 I was in total survival mode. Adding more and more to my plate, the time allotted for work, personal life, family time and sleep were diminishing. My life started to be broken down to not just a daily routine, but literally, hourly.
The token board was the first of the ABA therapy tools to be used, which breaks tasks and behaviors into 5-min increments and then repeats. Imagine how crushed my routine-hating spirit was as this became my reality every. single. day. That was at home.
In church, the token board was broken down into SINGLE MINUTES. Example: Jude sits reasonably quiet for 1 min and he gets a token. At the end of 5 mins, with the token board full, he gets a skittle. If he shakes one person’s hand, he gets a token.

Imagine how much listening I was doing setting and re-setting a timer every 60 seconds. I started to hate church and dread Sunday all together. (Note—this is why so many families with special needs children fall out of church and don’t return. There’s no support for them. No programs for their child. No allowances made for them. DON’T BE THAT CHURCH. If there was ever a group of people who need the support and community that a good church provides, it’s these parents!)

The visual schedule also made its debut into our lives during this time. This was such a double-edged sword—on one hand, Jude loved seeing everything that was happening that day, laid out in advance and it helped lessen the meltdowns over taking the bus, getting dressed, doing questions, etc. but on the other hand, God-forbid something changed that was on it, it was truly the end of his world.

One particular day last summer, he was invited to play at a friend’s house. I had told him 3 days in advance of the play date so he was very aware of the schedule, expectations and plan. The exercise was repeated on day 2, and finally again the morning of the play date. It sounded like this, “Miss Martin…3 o’clock…yellow house…play race cars.”

That morning, the friend texted to say her son had a fever and we needed to re-schedule. Totally reasonable, but to Jude, this was truly more than he could mentally comprehend. When he woke up from his nap, expecting to leave for their house, I told him we weren’t going and before I could even get my next sentence out, I was covered in hot coffee! It all happened so fast, but also weirdly, in slow-motion. Jude starting screaming the details of the play date (Miss Martin…3 o’clock…yellow house…play race cars!) over and over and over while completing a perfect roundhouse kick to the brand new cup of coffee in my hand. I was covered in hot coffee, with rage tears running down my face. He laid at the door screaming and crying for a good 20 minutes. Between sobs I could hear “Miss Martin…3 o’clock… yellow house…play race cars”
As I cleaned up the coffee, I grabbed the visual schedule and threw it on the bottom of my junk pile on the bookcase. We were officially breaking up. It’s not me, it’s you.

Scenes like this happened constantly and without warning all year. He hated change in his routine and any deviation from what he was expecting. One morning it was pouring rain, so I put his rain boots on him in preparation for our walk to the bus. He has worn these boots and actually loves them, but this particular day he decided that he hated them. He flailed back, violently kicking and screaming “no boots, I can’t do boots, boots are broken” catching my lip in the process. As I ran to the bus, surf-board style carrying him, blood dripping down my neck and soaking the collar of my shirt, his bus driver said to me, “I think you’ve got some blood on your shirt”. Yes, I’m aware—and a fat split lip to pair with it.
I stood there under the umbrella for several minutes after they drove away, tasting the blood, watching the raindrops mix with it on my shirt and just yelled out loud, knowing the rain would drown out my sound, “WHY?! WHY GOD?!”

The running away (called elopement in the autism world) was getting ridiculous and downright life-threatening. More than once, Jude got away from me and ran directly into passing cars. He has been lost at the zoo, the fair, the airport, the park, the aquarium and many others because when he runs, he will not stop—ever. Each time, my adrenaline soaring once I caught him, I would snatch him and scream at him while trying to calm myself down. He would run far, fast and without pause, any chance he was given. He would leave the house (in the time it took me to swap clothes from the washer to the dryer) and refuse to the answer to the sound of us screaming his name (something he still does to this day). He was growing taller (97% percentile) and faster and with no fear or sense of danger it was a combination that made for many scary situations.

The first few months of ABA can be summed up in one word:

CRUSHING.

I was exhausted both physically and mentally. As we worked to address the hurtful and destructive behaviors in him, those first few months, I can 100% see why many parents give up and don’t continue with ABA. Jude would rage like I had never seen him. Screaming and sobbing “mommy” for what felt like hours, hitting, kicking, in full “fight or flight” mode, all the while, I’m supposed to be ignoring him and pretending I don’t hear it, in order to teach him how to calm himself down and not “reward” the behaviors with attention or reaction. Another wise autism mom, during this time, encouraged me to take lots of video during this time. She said, you will forget how bad it was at the start, and it’s very encouraging to look back a year or 2 later and see the progress. She was so right and if you’re another mom reading this in the trenches of therapy—please do this—it will amaze you!

I share this with you, not to embarrass Jude (he doesn’t feel embarrassment anyways, trust me!), and really not to make you have sympathy for me, it’s to give you a real life understanding of this journey, so that you can better support and befriend these moms who need it badly! This was the soundtrack of our home for the better part of 18 months. This was a very normal night, trying to make him take a bath:

One night, I was rocking him to sleep, and pleading with God for him to sleep through the night and I realized something: I had resentment towards him. Yeah, I know—GASP I’m a horrible mother. I had actual bitterness towards my son in what he was “doing to me”. The list of things he wasn’t or couldn’t do was crushing me. EVERYTHING I was doing, to my own detriment, was for his good. I felt like I was literally killing myself during the day, turning my life upside down like a terrible snow globe, to help him, and he didn’t even appreciate it nor would he change! He wasn’t giving me even a scrap of a “this is gonna be worth it” feeling. I know what you’re thinking—he’s only 3—don’t you think you’re being hard on him and he can’t help that he has autism.

Tip of the day: Until you have walked in the shoes of a special needs parent, you can’t understand these feelings. We already grasp how awful it is to feel like this about your own child and comments like “he can’t help it” or “he doesn’t know” or (my personal favorite) “that’s just the way God made him”, do not help.
Just be there for your friend(s) and ask how you can help, and accept you can’t/won’t understand their walk. I had a very well-meaning person say to me last year, “well, God created him like that for a reason” and I had to bite my tongue nearly in half. You have no clue the mental toll and what (feels like) a life sentence to the roller coaster of emotions that we feel. Try to empathize and learn, even small things, about whatever makes that child exceptional, so that you can be a better friend. She needs you.

I know every parent, especially every mother can sympathize with loving a child so much, but also having such frustration with them, you’re ready to leave them on the fire station steps with a note: good luck, xoxo.

But to stay in that state of mind for weeks and weeks starts to really take a toll on you mentally. Jude was fighting me on every front. I was at my breaking point. No, I was BREAKING. I had been in this supernatural survival mode for months, with 100% output for work, 150% commitment to Jude, and no sleep.

It was during this time, that I started to experience a very tough object lesson from God.

How often is the Lord trying to give us something that will be so good for us and we fight against it? He is trying to lead us to the best end and we kick and scream and think we know better. Jude was just fine to keep screaming for his own way (eating candy, not brushing his teeth, being naked, running away, not sleeping, destroying property, etc.) but that’s not what’s best for him.

When I experienced the frustration of giving everything to someone who wouldn’t accept it—I had a light bulb moment.

How many years had I been living, kicking, screaming and fighting for what I wanted? How long had God been trying to get me to make changes and let go of things, in order to give me something way better and I wouldn’t accept it. How many times had there been things that were clearly not beneficial for me that I fought, schemed and demanded to keep in my life? I shudder to think of the blessings I would have had, or heartache I would have been spared, if I had just stopped fighting and given in to His plan.

In many ways it took Autism to teach me this.

Did God not love me (and prove it) so much more than I loved Jude? Thankfully, God never “lost it” with me, the way I did with Jude so many times in his short little life. I’m so thankful that God never has resentment or animosity towards me, the way I felt at times, towards my son. It was only then, that I started feeling my patience for him growing. Weekly, although we still had many rocky days, I was experiencing my fuse with Jude lengthening.

I swapped my nightly prayer of “God fix him” to “God give me patience and show me what to do.”

The summer of 2018 was FILLED with ABA therapy. We moved it to the morning to maximize on Jude’s mood and kicked it up to about 25-30 hours per week. And what do you think the majority of my friends were doing during this time? They were enjoying normal summer break. It’s what parents live for, right? The beach, amusement parks, popsicles, bikes, sleep overs—I tried to do all these, with some success, but it’s just so different. It takes hours to prepare and work on concepts they will need (like stop vs. come here) and rearrange therapy (or worse) have them in tow with you. A time that’s dedicated and characterized by “no schedule” is Jude’s worst nightmare. It also, consequently happens to be my busiest time with work from June-Sept, during which, I need to be focused and “all-in”. How can you be all-in with no sleep and your day filled with what was my new reality? I have to travel a lot in the summer as well, due to my job. This leaves behind an entire team of people just to get Jude through his schedule and routine. Sometimes it went well, other times, not so much.
Can you hear the individual strands on my rapidly fraying rope, breaking one at a time?

His birthday also falls at the end of the summer, which for the first 3 years, I planned big elaborate birthday parties with all ours friends and family, trying so hard to hold onto such a landmark event for “normal kids”. Jude either would hate the parties or be completely uninterested.

I was flying home from Boston and a thought hit me—why am I doing this? If I’m honest, it’s for me, not him. It’s to give me one day to have one of my favorite things on earth—a party—and give him something that every typical child lives for, in the desperate hope that he would love it. I was working from my window seat and I minimized my Outlook window and googled “best outings for an autistic child”. I clicked on the link that popped up… Huh…Dollywood—never been…